the 'Up' on Angela

2011 Butterfly Walk Registration Page

2011-03-11T11:46:00.000-05:00

Amster Lupus Butterfly Walk 2011...August 7th

First Approved Drug For Lupus in 50 Years!! Benlysta

2011-03-11T11:39:00.002-05:00

FDA approves Benlysta to treat lupus
First new lupus drug approved in 56 years
The U.S. Food and Drug Administration today approved Benlysta (belimumab) to treat patients with active, autoantibody-positive lupus (systemic lupus erythematosus) who are receiving standard therapy, including corticosteroids, antimalarials, immunosuppressives, and nonsteroidal anti-inflammatory drugs.
Benlysta is delivered directly into a vein (intravenous infusion) and is the first inhibitor designed to target B-lymphocyte stimulator (BLyS) protein, which may reduce the number of abnormal B cells thought to be a problem in lupus.
Prior to Benlysta, FDA last approved drugs to treat lupus, Plaquenil (hydroxychloroquine) and corticosteroids, in 1955. Aspirin was approved to treat lupus in 1948.
Lupus is a serious, potentially fatal, autoimmune disease that attacks healthy tissues. It disproportionately affects women, and usually develops between ages 15 and 44. The disease affects many parts of the body including the joints, the skin, kidneys, lungs, heart, and the brain. When common lupus symptoms appear (flare) they can present as swelling in the joints or joint pain, light sensitivity, fever, chest pain, hair loss, and fatigue.
Estimates vary on the number of lupus sufferers in the United States ranging from approximately 300,000 to 1.5 million people. People of all races can have the disease; however, African American women have a 3 times higher incidence (number of new cases) than Caucasian women.
“Benlysta, when used with existing therapies, may be an important new treatment approach for health care professionals and patients looking to help manage symptoms associated with this disease,” said Curtis Rosebraugh, M.D., M.P.H., director of the Office of Drug Evaluation II in the FDA’s Center for Drug Evaluation and Research.
Two clinical studies involving 1,684 patients with lupus demonstrated the safety and effectiveness of Benlysta. The studies diagnosed patients with active lupus and randomized them to receive Benlysta plus standard therapy, or an inactive infused solution (placebo) plus standard therapy. The studies excluded patients who had received prior B-cell targeted therapy or intravenous cyclophosphamide, and those who had active lupus involving the kidneys or central nervous system.
Patients treated with Benlysta and standard therapies experienced less disease activity than those who received a placebo and standard of care medicines. Results suggested, but did not definitively establish, that some patients had a reduced likelihood of severe flares, and some reduced their steroid doses.
African American patients and patients of African heritage participating in the two studies did not appear to respond to treatment with Benlysta. The studies lacked sufficient numbers to establish a definite conclusion. To address this concern, the sponsor has agreed to conduct an additional study of people with those backgrounds to further evaluate the safety and effectiveness of Benlysta for this subgroup of lupus patients.
Those receiving Benlysta during clinical studies reported more deaths and serious infections compared with placebo. The drug should not be administered with live vaccines. The manufacturer is required to provide a Medication Guide to inform patients of the risks associated with Benlysta.
The most common side effects in the studies included nausea, diarrhea, and fever (pyrexia). Patients also commonly experienced infusion reactions, so pre-treatment with an antihistamine should be considered.
Human Genome Sciences Inc., based in Rockville, Md., developed Benlysta and will co-market the drug in the United States with GlaxoSmithKline of Philadelphia.

Thank you to everyone who showed up for the Amster Butterfly Walk

2010-09-16T10:09:00.000-04:00

2010 UM amster Lupus Butterfly Walk Photos-link

2010-08-23T12:34:00.000-04:00

http://www.flickr.com/photos/madarasdesign/sets/72157624700156550/show/

This year's walk was a fabulous success and extremely fun for me. My family came for the walk and a visit. It meant the world to me and Douglas. The Saul side of the family has not been able to all come at the same time. my sister, nieces and brother in law have made it up for the walk and they encouraged the rest of family to join in. Also other extended family form this area came which made it that more special. I know how busy everyone is and funds are tight but people came anyway! I would say we had almost 500 attending the walk this year including volunteers and UM staff. Thank you everyone!!!!

More photos to come...............

Gardening,sun and lupus............

2010-04-08T13:52:00.002-04:00

For those of you who know I have lupus; the sun can be friend and foe
Here is a poem I awoke with late last night inspired by the green lushness of spring. I put it to written word.

A hot spring night's dream of a gardener's lament

Immediately I feel myself drift from winter into spring. The long cold dark gives birth to steamy-musty spring air and I am caught somewhere in between two worlds. I know the frost covered leaves give way to green blossoms as a sneaky little tease. I sweat under our comforter and feel heat flush over my body like an internal wind carried by each deep sigh. I yield the impulse to walk to an open window and breathe the moist outside air; fresh with abundance and hope for a fruitful year of growth, heat and sun. I am foredoomed by the sun as well; that hot orb as a double edged sword for those of us who should fear the fate of the suns powerful rays. Those of us affected by its biting, burning beams of bright light can see the scars it leaves behind. They are stronger than clouds of cold and more brutal than bitter ice. The sun is my gift and enemy both at once.

When I walk to the open window I feel the moist, cool, damp spring air and now I can breathe. I feel that all is well internally and with the emerging turned soil. Why is this time of year more torturous than others? The inevitable sunshine and sweat that plagues our sleep, the butterfly kisses on my face or the swelling of joints after a long days work in the dirt and the delight of a fruitful day of harvesting our gardens bounties?

I long for the turn of winter to spring and then summer with trowel and shovel in hand under early morning shade then hide inside during sun's peak hours from its perilous rays which make wolves come to feast on my body. I can sense the time upon me with great expectations mixed with excitement and wonder. That which I cannot explain nor do words form in my mouth. I can only write at this late hour my deepest fears and aspirations both at once as if fallen into a vortex of unknowns. My head swims in the thoughts. I know when I awake in the morning sun I will find the greenest of leaves and grass growing so fast one can hear its moans. The soil is rich with worms and hopes of growth. I can feel the dirt under my nails not yet fully washed away after weeding earlier in the day. Knees burning from kneeling and knuckles wrinkled with pain and stiffness are signs that bring joy and concern at once with great anticipation for many unknowns.
The garden heals my soul and challenges my body yet it is my greatest joy. I long for it like a remote lover.

Tonight I rest on my laurels for another day. One filled with certainty and vagueness alike for tomorrow is another day bright with opportunity and hope.

Long term outcomes of children born to SLE patients study HUM00007966

2010-03-08T12:23:00.000-05:00

https://www.umms.med.umich.edu/engage/detail_pub_study.do?show=YES&id=4119&TYPE=F

This study at UM will help us find out how children of woman who have SLE are affected in the long run. It is a a study in which it is easy to participate. Read the link for criteria. Dr. Marder is a devoted Dr. and researcher. I hope you will participate of you meet the criteria.

Update on health front

2010-02-21T10:29:00.000-05:00

All in all lupus is still inactive and I am more active. I am sleeping better as well !!!! Which is rare. Just last week I was lacking much sleep. Last three nights have been great sleep wise. I do have a lot of pain especially in bones and joints. That seems to be easing up a little. Last week hit me hard. Every nerve felt raw though out my body. I will be glad when my man gets home form his long journey. Tonight or tomorrow he will be pulling in the driveway. I cleaned the garage and basement for him so he can unload tools and begin a week of rest and healing.

Be Well

tender

2010-01-29T13:21:00.004-05:00

OK I know I am old now...........

2010-01-25T19:33:00.000-05:00

When Doug starts receiving the AARP membership reminders and I see and ad for "Heritage Insurance" for middle ager's life insurance.............Can this happen? I am not old. I am not old and Douglas is doing pretty great at 50. I guess the old view of "Middle Ages" are....well...........OLD. It does not mean we are each old. Simply in the mind of the beholders.

BPA in plastic.............................

2010-01-16T18:54:00.003-05:00

http://abcnews.go.com/Health/wireStory?id=9574605

Lupus awareness blog

2010-01-16T17:38:00.000-05:00

http://lupusresearchnews.blogspot.com/

Celebs who support lupus and celebs who have lupus..Seal The Musician?

2010-01-16T17:34:00.000-05:00

http://cure4lupus.org/awareness/celebrities.htm

With all these famous folks donating and advocating for a cure why is it still behind the scenes? Why do insurance companies cover Viagra and still have yet to come up with something lupus patients can take that will not kill their bones, give them cancer, cause heart issues or worse??????Celebrities can help because they have a voice.

If you Tweet please tell your favorite celebs to join the cause for a cure. Everyone knows someone with lupus.

A quote from a nurse facing hip replacement

2010-01-16T15:45:00.000-05:00

"One doesn't know how important these things are till they are confronted with these serious issues. Walking is so taken for granted and necessary for a normal life. I appreciate your support and help." Margie

Keep making good choices !!

2010-01-15T13:34:00.002-05:00

"It is our choices...that show what we
truly are, far more than our abilities"
- J. K. Rowling

Update in Haiti and how you can help through "Partners in Health"

2010-01-15T10:20:00.000-05:00

http://pih.org/where/Haiti/Haiti.html

Dear Friends,

The tragedy in Haiti is more dire than we could have ever expected it would be in the hours following the earthquake. But thanks to your support, we're already making a difference.
We received a report from Cate Oswald, one of our staff in Haiti, who traveled through the Central Plateau to Port-au-Prince yesterday with two truckloads of meds and supplies. She described the scene:

"We started seeing destruction from Mt. Cabrit (where big rocks lie in the middle of the road) through Croix de Bouquets where it doesn't seem as bad but lots of walls down. Then the scene gets much, much worse. Tonight, everywhere throughout the city, as we drove by the national plaza, there are thousands of people sleeping outside. While I was in Port-au-Prince, there were still aftershocks being felt. I didn't venture into other parts of the city, but as you all know, koze sa pa jwet menm [Haitian saying literally translated as "this is not a game"]."
The trucks met up with PIH staff, including Dr. Louise Ivers, at the UN's logistics base in Port-au-Prince. Louise was one of two doctors attending at the time, and they had nothing but aspirin until our trucks showed up.

Our leadership is in Port-au-Prince now determining the best location to establish a base of operations. Their assessment includes laying out all the next steps for getting supplies, equipment, and additional staff to the people most in need.

Another of our Haitian colleagues, Patrick Almazor, reported today that he and several other doctors have set up mobile clinics in the Delmas section of Port-au-Prince.

"We have a lot of fractures," he wrote in an email. "We are running out of meds, I'm on my way to St. Marc [a PIH facility] for supplies."

Importantly, given the patients already flowing out of Port-au-Prince to St. Marc and our other facilities outside the city, we cannot leave our hospitals understaffed.

So we are recruiting surgeons, anesthetists, nurses, and other medical professionals to travel to Haiti in the next couple of days to help with staffing, particularly as many of our staff have lost family members and friends.

There's still so much that needs to be done for the people of Haiti. Your help in spreading the word can make a tremendous impact:

if you feel sorry for yourself watch this inspirational story

2010-01-14T19:30:00.003-05:00

http://www.youtube.com/watch_popup?v=9xwCG0Ey2Mg

http://coolpositive.com/

This is the bone grafting material used in my right hip and it is working!!!

2010-01-14T16:56:00.003-05:00

http://www.wmt.com/Physicians/Products/Biologics/PRODENSE.asp

Check this out. New material made out of calcium sulfate and tri calcium phosphate.
St Jude's hospital in Memphis is using it for AVN ( osteo-necrosis) but only a few patients have been treated with it. I can not find stats in this. This new material works better, so far, than cadaver bone grafts and other cement and materials used to fill in those voids.

"Robert Heck, M.D., an orthopaedic oncologist at the Campbell Clinic in Memphis, Tennessee stated, "Wright's new system is a simple but important advancement to the standard core decompression procedure. Through a minimally invasive approach, I can now debride more of the necrotic bone lesion and fill the surgically created void with the PRO-DENSE(TM) graft. In a retrospective study of 35 hips in 24 patients over the past 18 months, the early results are very encouraging."

I actually had the second total hip replacement on the right side two and a half months ago. They had to replace the plastic liner which had worn down and there was significant bone loss. Some of the loss was behind the ball-socket and there will be no way to know if bone grows back inn that area because it will not show up on am X-ray only CT scan and I do not need more radiation. We can see that bone is growing around the areas we can see on x rays around the prosthesis. I decided to give this a try when my surgeon at UM, Dr. Blaha, told me he had a new material which shows great hope in helping bone grow back where there was once necrotic holes in the hip region because the area is encapsulated and has time to do it's work before disintegrating. It has not worked as well in knees. I already asked if he would try it with knees and he said he did not feel it would work. I trust his opinion. We have decided to do something with the knees called drilling, similar to core decompression where they drill holes in the bones around the knee with hopes of stimulating natural bone growth. Starting with right knee where there is more bone loss in the tibia, femur and some patella spots. Then the left and I should be able to be even more of an active, vibrant, exercising woman on the move with out swelling, pain and limps or walkers-canes-wheel chairs.

What is amazing is that very few Dr.'s know about this. Share the info with your ortho surgeon and others.

I am excited about this and I understand it is very new and still "experimental" for use with humans. I will keep you posted. And no more PT. I am free to work out on my own.

From Lupus Alliance: Support group

2010-01-13T13:24:00.000-05:00

Happy New Year Lupies,
>
> This a short reminder of our meeting this Thursday Jan. 14 at 6:30pm. Our topic is:"The Special Challenges of Caring for a Lupus Patient". This is a good opportunity for sharing caregivers and loved ones to voice there everyday challenges in supporting the patient ( or should I say Us). I go through these challenges everyday with loved ones, and sometimes there are testing moments. So please encourage your loved ones, children, husbands, parents, wife anyone who supports in your battle with Chronic Illness to come with you for the meeting. Their always Welcome

Always looking forward to seeing everyone,

Kind Regards,
Shemeka

Lupus Alliance of America

(800)705.6677 (o)

www.milupus.org

Feeling better.....winter's hibernation has begun

2010-01-12T12:20:00.000-05:00

I have had a cold and allergies, probably form the wood stove dryness? It started when we returned form Alabama for Christmas and it is still lingering. It might be allergies and I am meeting an allergist who happens to be my lupus Dr.'s wife. Keep it all in the family. I look forward to finding out what I am allergic to because of all the issues I have had over the past year. I know my body is sensitive and I should probably be avoiding all those things which could set my immune system into a flare, which it did for a few days but mild.

Winter is the time to go into hibernation and for us to look deep inside and make some of those inner changes we have wished for all years past. It is a good time to get into a meditation and exercise routine and focus on that inner voice. I am feeling very cozy in my home. Reading is also on the top of the list along with writing and cooking. It is snowy and sometimes so cold it takes my breath away. So why fight it? Stay inside.

health reform and thought provoking ideas

2010-01-07T19:26:00.003-05:00

http://www.opencongress.org/bill/111-h3200/text

http://www.whitehouse.gov/assets/documents/obama_plan_card.PDF

I have been asked and questioned and even placed under the hot lights when it comes to health reform. I know what I would like to see and I understand a need for reform. Yet I do not have all the answers nor do most of the people, on all sides of the fence, who think they do. Here is a start:If you have read the over 20,000 pages let me know.

1) Take the drug and insurance company lobbyists out of the picture. Look,drug companies are not the enemy but they do want people to buy their drugs and lobby for it with all the profits they make. Make them hold off on massive profits for a while we figure out the issues and solve the problems.They can afford it. Make it a federal offense for our leaders(congress) to take money or any gifts from these companies.
2) No public official should be making profits in any way or receive any gifts for doing what we pay them to do. They should get charged for it and we should keep better eyes on what they actually vote for and why, Follow the money.
3) All congress should have medical insurance equal to what most Americans have and they should pay what we pay. They should in no way get discounts or special requests and privileges. They work for us not us for them.
4) All congress and white house-public officials should not receive any raises and actually should take a cut in their pay while we all suffer together.
5) Any illegal immigrants should go through the legal process and become a legal citizen with full rights and pay their taxes(not just Mexicans but all illegals, but most are hard working and desperate Mexicans brought in by slave trades, large corporations with lawyers, lobbyists and large bank accounts...think of the chicken processing plants, large growers and construction companies)Watch "Of Captains and Chiefs" a mini series from the late 70's early 80's on Net flix. Or read "Grapes of Wrath" "War and Peace" "Lacuna" and any book or movie, documentary on the abuses of large corporations-corrupt governments and extra rich-political families who run the world behind closed doors. Our fate lands in some of their decisions and wishes. Do not think I am being racist or cruel. I believe every human life has value and is worth caring for. I would never turn down a person in need of medical care or food-shelter. What I am saying is that, while I am more left of center and wish socialism could work as a principal, I also understand economics, human nature and how the world works. Perhaps IN A PERFECT WORLD IT COULD WORK? I agree we, as America, should not just let anyone live here for free. that is all. If you are a Dr. you made an oath to care for every human life. I am compassionate and care for all of life. I also feel we should each carry our load and be responsible. If lack of education, enslavement, illiteracy or mental health conditions keep one from going the legal route then they need help. I am glad churches and social workers are doing their part. I do not have the answers but I do know something has to change.
6) Take care of yourself and your family by being healthy and eating properly while exercising, stop smoking and do everything you can to be pro-active in your health. You are ultimately responsible for your general health, weight, blood pressure, blood sugar etc. If you take care of yourself you have less chance of causing major medical bills. Try your best to have some sort of insurance.
7) If you do not have insurance or have a high deductible you can work out a payment plan with your Dr's and hospitals that fits your budget with out placing your burden on those who do pay.I make monthly payments for my husband and myself. Between the two of us our insurance is $400 a month with a very high deductible for hubby and Medicare and Blue Cross Blue Shield for me. Our co-pays are high.
8) Ask your drug companies what plans they have if you can not afford your meds.
9) Support legal immigration reform which other countries use successfully and with dignity and respect. This is not limited to illegal immigrant grunt workers or slave labor, even rich folks from other countries who only live here part of the year and pay taxes in another country. This includes those very rich who buy property(vacation properties) in desired areas. Force them to pay a usage tax for what services our country provides. Look at New Zea-land, Copenhagen, Canada and other countries who make it challenging to become a citizen but do not support illegal slave labor and do in fact provide health care for every legal citizen(some might call this socialism but Denmark pays about 60% income tax so every person has health care and free education and no crime. It is not about profit it is about compassion and every humans right to have medical care.

The white house health reform............try to read it.........question it....I am perplexed

2010-01-07T18:50:00.000-05:00

http://www.whitehouse.gov/assets/documents/obama_plan_card.PDF

Flare, cold and lucky Lakshmi for an abundant new year

2010-01-01T13:38:00.003-05:00

I am celebrating the new year resting and have a cold which turned on my immune system and now a small flare. I will get over this fast but resting up. I spent last night watching "Wild Hogs" with Douglas and had a champagne toast. Jennifer made a fabulous soup and I made a spinach pie so all nurturing and healthy. I missed Mary's party and Jennifer and Dave's gathering, which was sad. but there will be many more. I feel blessed that my family and friends understand it when I am sick and have to cancel plans or re-arrange plans at the last minute.

Happy new year to you all and here is to a new and bright year filled with light 2010.

band together for lupus.Julian Lennon and James Scott Cook

2009-12-18T14:17:00.003-05:00

http://www.youtube.com/lupusfoundation#p/u/1/0HyD-bHFFjI

Check out the you tube video for "Band Together For Lupus"

A new Day and a New Blog

2009-12-13T15:08:00.003-05:00

Hello friends and family,
This blog will now be used for medical updates only. I have started a new blog with a new design and features and a whole new spin on my writing. It will take a few days to get it up and running smoothly so please check in time to time. Thank you for walking this earthly path with me.

Love and Light,
Angela

AngelasGuide.com

Riana commenting to my question

2009-12-12T13:02:00.004-05:00

These Days in French Life's creator answered my question, and many other people's as well, as to how to live a slow life in colder areas outside of the South of France. Here is her thoughtful response. I will not go dumpster diving. But the rest are goals to achieve. http://www.frenchtoastfrance.blogspot.com/

Wednesday, December 09, 2009
Where can you live a Slow Year?
Many people have asked me if they can live this kind of life anywhere, not just in rural south of France. Of course. You can stop consuming, using money, absolutely anywhere in the world, especially in your town. I actually am jealous of my friends and readers in big cities like Paris, NYC, Los Angeles… (two of those cities I once lived in for many years completely clueless of all the opportunities at my fingertips).

There is so much opportunity to be a non-consumer in big metropolises and wonderful mass-public transportation to boot. Imagine each store that you see along those miles of boulevards- each one has a trash bin full of clothes, food, band aids, coffee, houseplants; etc. So many stores, so much waste! Those daily farmers markets with like minded people that would gladly give you free bags of bruised fruit for your “animals”. What a wonderful place to be a dumpster diver and freegan. You could feed a whole apartment building with one day’s worth of one grocery store’s green bin waste.

Which brings me to community: once we started our slow year, it became obvious that we were not “dropping out” of society and running off to the mountains to live in a cave or off to ten acre ranch with no neighbors for miles. Quite the opposite, we became more involved in our community, we need them for bartering and trading, advice and sharing labors, and for giving away our excess of food and clothes. Keeping the balance of good karma.

We got a house that is locked into a maze of twenty other houses, not a garden in any of them. But somehow we found, or it found us—a community garden across the bridge (it is about kilometer walk away) to share a plot of land. But food can be grown in pots, on terraces (hanging gardens) and squatting on abandoned lots is quite successful with raised beds. Gardening is hard work, farming is even harder and back-breaking though immensely rewarding. It is not for everyone. They are not necessary to living a slow year, we had neither our first slow year.

Not everyone has the Wise walking weed woman living next door, but you have massive libraries, and giant bookstores, full of the same knowledge. And the Internet with groups that are like minded (blogs like mine for example). Craig's list has free listings, and freecycle, of course and there is even a website in my region called c’est gratiut where people list what they want to give away- for awhile there was a Mercedes station wagon! All this information is there for you just waiting to be tapped.

On foraging, much easier than gardening and it involves exercise, walking, getting to know your streets, and neighbors- maybe at first stick to edible flowers, nuts and fruits near the dirty parts of town (ie dog shit littered sidewalks in Paris) but look to the arboretums, nature parks, those green belts that all cities have that are kept clean and green. Central park is a virtual salad bar of wild edibles. Fallenfruit.org in Los Angeles gives you a neighbourhood guide of where you can pick govt property pomegranates, oranges, lemons, plums, walnuts, persimmons.

What about those great big city food co-ops, high end organic grocery stores with prime pickings- often they are cool about trash picking. And CSA’s that ofter free gleaning after they have harvested. All the sources for organic beef, chicken and pork can be found easily through these networks.

Most of all, what happens with a Slow Year, happens inside. In your home. Deciding not to spend money. Opting to forgo a new car or designer wardrobe in place of cutting out that second job that feeds a corporation not your family. It happens in your kitchen making food from scratch, fixing and repairing instead of purchasing, finding alternatives for toilet paper, toothpaste and shampoo and things you would have bought previously. It means making gifts and gift wrap, thinking outside the box.

And really, it all starts deep inside your head. Fighting the demons that have brainwashed us into being slaves for money, keeping up with the Joneses with new cars, clothes and gadgets, falling into consumerism traps and follies. You can do a slow year, in any town, any village, any country in the this world. It all starts with a mindset. The rest will follow, the universe will provide no matter where you live.

sites for those who desire to be cooks,farmers or eco friendly

2009-12-12T11:14:00.003-05:00

http://urbanhomestead.org/journal/

http://www.cleanairgardening.com/fertilizer.html

http://www.peddlerswagon.com/

http://chiotsrun.com/2009/11/18/making-preserved-lemons/

http://realfoodmyway.blogspot.com/

Climate Change. Check out Nat Geo site

2009-12-12T10:20:00.001-05:00

http://blogs.nationalgeographic.com/blogs/admin/mt-search.cgi?tag=polar%20bears&IncludeBlogs=59

Bone chillin

2009-12-11T11:35:00.003-05:00

I am feeling the bone chilling snowy cold at the moment. I really do not mind the winter if prepared and warm. It is very pretty outside and the white blanket on the grass is only the beginning. It is not even winter yet. I think we are in for a long one.

So I count down with dread the days till Doug leaves for Tennessee. He will be gone longer than expected and I am not thrilled nor is he, but very grateful for the work. He is so concerned to leave me alone in the winter. I am too quite honestly. It is a lot to keep the wood stove going in the basement, collecting kindling, recycling, trash up the hill to road in the ice and dealing with regular power outages. I sure love being home though. I think I did not realize how fragile I am now after 6 joint replacements and more to come. I structurally feel more fragile (weak) than I ever have and that is so very hard for me to admit. I have prided myself on how strong I have been. I was always the tom boy and challenging anyone to arm wrestling or a race. Now I feel happy to walk to the car with out falling a breaking a bone or dislocating a hip. PT yesterday really wiped me out which spurred on this realization. Next week we go to 3 days a week for 1.25 hours. It is great but I feel it more now than ever in all joints and bones. My poor therapist is afraid she will hurt me. Simple things seems challenging. I need my guy home!

I guess this is how it feels to age. Yet I am only 43. Just glad lupus is behaving now and kidneys are doing well at the moment. I just wish and pray Douglas will find work here in Michigan one of these days soon. it will be a while, if ever, I will be able to work again. I do not know know how long we can keep this up. He is not getting younger either. We occasionally talk about moving back down south or to a smaller place in town. I can not even consider a move at this point and I have such a fabulous team of health care providers I would be lost anywhere else. I have moved 25 times in my life. I really plan to be here forever but we shall see. To even think it feels odd considering how special this land and home are. We talk of other options too for work-income. We shall see where the economy goes. We are all in this together. Doug and I are blessed to have one another ! That is what counts, that and our family-friends.

Baby it's cold outside............

2009-12-09T20:01:00.002-05:00

It is very cold here in the sub arctic and the winds are blowing up a 50 per mile hour storm. I hear trees and see a few falling in the woods......So glad we topped our critical dead ones. We still have a lot to clear but no neighbors will be knocking on our doors about trees falling on their land.Power flickering in and out and snow-ice mix are causing a long cold winters night(s). I am worried about my friends who are camping somewhere in all this. C and M if you are reading this please phone home. Ice in your tent does not sound good. Also please let me know if you plan to be coming through here on your way home.

Halo (Angel-Brent) is visiting next week. I am looking forward to his visit. He has been a dear friend for so many years. He is from deep Mississippi and is a "Highlander" by birthright, tartan-kilt and all. His sister lives in the burbs of Detroit and he is flying in and renting a car to see us both. Little does he know Doug has plans for him to be a lumber jack. It seems to be the way Doug bonds with male friends and his brothers(in-law). Howie knows best !!! It is a way of paying for room and board. I am happy the wood stove, once it gathers heat, is keeping our little piglets warm. It truly is amazing how much heat our wood stove puts out after two days of running full steam it is like a sauna in the west side of the house even with garage doors cracked. The east side, well that is another story. I just have to remember to give my stews and dishes more time on the stove to cook. That is how well insulated it is. I had lentil soup on it all day last Sunday and I still had to push it along on the electric stove. Yet the satisfaction of having a pot of food stewing all day on the wood stove would be satisfaction enough. Do you think the food channel would create a show for me to entice people to live and cook semi-off the grid? Put in a good word for me and you might get a baked goose. Speaking of which I, have a stew which has our name it now with neighbors cabbage, Michigan beef and a salad made of neighbors arugula,mizuma greens,my frozen garden peppers, oregano and sage from the garden to spice things up.

For those of you who are reading or who have read "Lacuna"....I am at the portion where he (narrator) is living in Asheville and having his first encounter with the old "mountain dialect" from Madison County, after living in Mexico with Diego Rivera and Frida Khalo. I remember when I first encountered this odd dialect and I was hanging on every word or utterance of vocabulary I could understand. It was not good or bad, nor a judgment, but a realization that we have many dialects in our country which have yet to be fully exposed (not as many as India) enough to make one think while listening to the spoken words in their own "country", so to speak. Remember the movie with Jodie Foster? ("Tay in the waynd?). There are so many people out there living the life of the ones who went before, especially in the mountains of the south. It is hard to imagine there are kids who have never heard of TV. I met a few. In West Va., SC and NC there are many communities separated from modern times by choice and some by ignorance. There are still moon shines and runners and traps in these old hills(thank goodness). Nascar was started in this way.........by moonshine runners. Our friend wrote a book on the history and I was amazed. I sold land in the NC Blue Ridge Mountains(unfortunately now I am looking back) and would come up on all sorts of old(some not so old) stills. Always an interesting find!!!!I had a good relationship with the locals and they would bring us deer meat and watch over me while I gave them privacy and respect. I think that if you are going to drink it you should make it. i actually enjoyed the few tastes I had of moon shine. Now I use store bought "Grain Alcohol" in the making of medicinal and herbal tinctures(like echinacea, golden seal etc.) Us herbalists are shy and weak in constitution by nature. Point is: that if you have the gifts of family recipes....you should use them. In moderation folks !!! No fast driving to the shooting range or the new restaurant, sky diving, disco dancing, deer hunting, open mike at the moose lodge or gallery openings while under the moon shine influence. So I iwll let taht be said and eat and drink in the moon !!!!

"Gag me with a toothbrush"

2009-12-08T20:47:00.003-05:00

Has anyone out there ever had a gag reflex? This is new to me. The past few months I have had an irritating cold which seems to come and go. With it comes an even more irritating "Gag Reflex" when brushing my teeth and coughing. I used to think gag reflex was a term used for my sister's weak stomach, long car rides and the occasional high school hang over. Now I am gagging every time I brush my teeth and cough And I am no high scholar. It is almost like throwing up without going through the motions. I hate throwing up!!!!Even during Chemo IV treatments I held it together for fear of going beyond the gag. Now I wonder if I should be concerned? I do not like this.

Do tell if you have any advise. I am gagging over here !!!!

As the Holdays arrive......I am split in two

2009-12-08T18:36:00.006-05:00

This time of year brings out two opposing selves with my one body-mind-spirit self: One is trying to get off the consumer teet and exchange only gifts of the heart-hand and nothing store bought. The other half of me is so used to the old warm fuzzy holiday cheer and all it's glory. I spent all of the weekend after Thanksgiving watching the Hallmark Network. Now that will take one back in time. Yet they also shared a similar message. What is it about the holiday season (Christmas, Hanukkah,Kwanzaa, Solstice and whatever else people celebrate around the world) which makes us examine our motives,desires, financial abilities and lack there of, need for consumerism, expectations and all the not so needed stress which goes along with the seasonal rush to please? It is as if we lost site of what this time represents for people of all faiths and beliefs.
The most important thing is the gift of giving and receiving all the love the world and God and mother earth has to offer. There is no dollar amount to that. What we can equate is our love and our intentions, yet within our means. I know people who have gone into deep debt to satisfy the desires of their children and those who feel a need to have gifts from Target, K-mart, the mall and other places where only material items exist. The long lines of inpatient and rude customers are a "big hint" which sings that "something is not quite right with that old scenario".

So I come to the place of explaining my unusual Holiday request............I ask that you do something very different this year, if you have not yet already started. I ask that you stop yourself from consuming anything which is not absolutely necessary and makes sure you can afford it. Also that you email your cards instead of sending them with paper and stamps. "Cold"...I can hear my family now. This is not to stamp out old Chris Kringle it is a call for balance. In a consumer driven society, which has not worked out so well for many, I see the cup half full, yet still. I see there is a chance to pick up the old fashioned phone to wish cheer as opposed to sending a card.I can feel the joy of my elder neighbor when I call her to see if I can bring over a loaf of fresh baked bread. It is the smallest of ventures which bring about some of largest pay offs in joy and hope. I hope we all look at how much we could "do with out" in a world riddled with credit issues, defaults and junk piles of stuff building up in our landfills and oceans. We need to feel good about our choices. I feel good about my choices this year because I am in debt. I do not have the ability to buy when I owe so much. That is the bottom line here. It is responsibility and integrity for me personally. Kids don't mind making cookies and getting something home made from love, as long as they understand why. There is a story to tell which could save our future. Join in the discussion. Happy Happy !!! and throw away the credit cards !!!!! If interested check out www.freecycle.com. it is a way to trade with people in your area like a barter system.I have not used it but I have friends who have found and given great stuff.

Good Duck Recipe with stuffing

2009-12-06T14:36:00.005-05:00

Take a four-five pound duck, split the bird down the belly, not through to the back, you will want to spread the duck with skin side up onto a roast pan. Then generously pat down all of the bird with kosher salt and place it on a roasting pan with drip pan under and leave uncovered on the bottom shelf of fridge for four days. This cures the meat to a degree and toughens the skin which will hold in juices. Bake it on 275 in the oven turning once but still uncovered until meat temp is 180. Flip over skin side up and take out of oven. Turn up oven to 450 and bake it long enough to crisp up the skin about ten minutes. It sounds over cooked but that is OK because you cured it. Then drain off fat into a bowl to save for sauteing potato or roasting vegetables. Cover the duck and move on. Saute in butter or olive oil a one cup celery chopped, one large onion and a few cloves of garlic chopped and small shallot with salt and pepper and turn oven to 375 while veggies are becoming watery. Add one pound of crumbled cornbread and 1 bag crumbled oyster crackers, two eggs, fresh sage and parsley chopped or dried to taste and salt and freshly cracked pepper with a quarter cup stock and a few dashes of Worcestershire sauce. Add some more butter or oil, mix with hands and place in a casserole dish bake until crispy on top. Options: You can add cooked ground sausage, bacon, soysage, apples, sweet potato, carrots, cooked rice or other grains, nuts, chestnut meat, dried fruits or farm raised raw oysters cut into bite sized pieces. Buy your oysters in October when in season and inexpensive and freeze for up to 3 months in their brine. Serve the duck with the bird skin up still "splayed" then place the dressing all around the edge of the platter. Serve with a wild cherry relish like cranberry relish but with cherries. Enjoy !!!!!

For a smoky duck try placing hickory chips, which have been soaked in water, in the bottom of the roating pan. But you will loose your drippings. You could also put the chips in another pan in the oven on the bottom shelf. Keep adding water.

Ckeck out the kid in a wheelchair doing tricks

2009-12-06T14:27:00.000-05:00

http://www.youtube.com/watch?v=7NJvgT60-mk&feature=player_embedded#

Last Supper

2009-12-05T09:50:00.003-05:00

Nina has a buyer for her casa "Eden Brook" and happily is ready to make the transition into a simpler home. The house is a lot to maintain and an expensive one in these times. She is also working too much to be home and involved at the level she desired. It is time after 3 and a half years to move on. I would love for her to stay with me while Douglas is in Tennessee. We were once room mates and enjoy one anothers company.

I have to say, when Doug and I are invited to a dinner or event where we will not know anyone besides the hosts, especially those types of dinners where it is expected of you to give full professional disclosure, network and come home with a stack of business cards of those who could assist your business or vice verca. I usually have to drink 1-2 glasses of wine to make it in the door and a couple more while making my way through the room to find a friendly face. Someone perhaps as out of place as me. Douglas is always the voyuer in the corner watching the networking crowd work one another while he hides as if made invisible. Within an hour we are ready to leave and make our way quietly to the door. "Where did Doug and Angela go?" someone will say. "Not sure they were here a minute ago". These experiences are excruciating to say the least. Self promotion and "selling" our business talents is not our favorite task. I prefer clipping my toe nails. So you can imagine I was very pleasantly surprised last night when Nina's dinner party of 9 turned into a wonderful evening which flew by fast thanks to lots of agreeable and interesting conversations, none of which had to do with self promotion. Nina was a gracious hostess and very relaxed with this lovely group of people. We all had much in common and small world incidences unveiled themselves. It felt like we knew one another for years, like family. Five hours flew by so fast. I never make it to 12:30 except for Max and Terry's annual party which starts late but we did last night.

I really enjoyed myself and so did Douglas. The gathering consisted of Nina's new friends she has met through Natural Awakenings Magazine and the articles she wrote, is writing, for the publication in addition to a "class" or gathering she has once a month(I think) where people can speak about the changes we face on the planet and their concerns or insights. We truly did enjoy the evenings conversations and the food was amazing !!! Nina rolled out the red carpet in a relaxed-comfortable way. We felt we met dear old friends. What a great last meal in a precious home which served her well. A new journey is ahead and with open heart and a willingness to adapt to the changes in our economy, environment, world affairs etc. and to support one another through these tough times.

Cheers to Nina !!!!

A new little man enetered the world yeterday LBS

2009-12-05T09:35:00.005-05:00

LBS stands for Lawson Bryce Saul. My nephew Caleb and his wife Holly are now proud parents after Holy survived 13 hours of total labor and just the last two hours of pushing. Ouchy. He is healthy and at over 7.6 pounds and 21 inches at length. Hair already !!! They are proud parents indeed. My grandfather, his name sake, is happy the only grandson will be carrying on the Saul name, with his great grandson's first name being Lawson. Same initials too LBS. It's a family joke how and when we call him LBS.

So we are happy and this will be a fabulous Christmas gift for their new little family.

All is good and cold on the home front. We are now officially heating with wood and I am going to make a lentil soup on the wood stove today. Will try to cook with it more this year. I have a cast iron dutch oven which can be placed on the coals for meat stews and I could bake bread on top slowly in small loaves. Cornbread does well. I was going to attempt making corn tortillas on the top with a cast iron skillet.

My friend heard my call for greens and greeted me at the door with a huge trash bag filled with greens, eggs,cabbage and a buttery lettuce green with arugula. Perfect timing because I was supposed to cook greens for a dinner gathering at Nina's and my garden is done producing. Douglas had to turn up the kale which was infested with slugs and cut works and bitter. We have some mustard but not enough for 8 people. So she saved me!! Then we spent a quiet late afternoon noshing and sipping wine while Douglas fixed the sink. I was cleaning a pork loin when the drain pipe broke loose sending a river of slimy pork juice and water all over the bottom of the sink, me and the kitchen floor. It could not be repaired. After clean up he went to Lowes for supplies and was able to have it fixed before dinner. Always something. One must laugh at these things. It is so nice to have a friend two doors down who has similar interests and can come into our home with pork juice all over the place !!!!and bearing a bag of greens. Woman after my own heart.

Chicken foot soup from Riana Lagarde

2009-12-04T11:21:00.003-05:00

chicken foot soup by These Days in French Life.
on the fire. it was firey hot too!

found the feet in my freezer, cleaned them hacked off the nails, made some hack marks on the feet, washed them again, scrubbed them, then boiled in hot ginger water, rinsed them off, cooked them in broth for 24 hours with ginger root, cilantro, onions, carrots, celery (all from freezer- previous dumpster dives) peppercorns, tomatoes, anything else i could find, garlic, half a habenero pepper, and cooked and cooked and cooked until they fell off the bone. by the time i served it, the soup was a rich thick gravy. i added potatoes and a sweet potato in the last hour to add some extra nutrition.

check out her blog: http://garlic-breath.blogspot.com/

nothing like new bone growth to change one's attitude

2009-12-02T14:59:00.002-05:00

Yes you heard me !! The bone around the new hip revision is starting to grow new bone. I am so excited I could..............walk. I am now using a cane and do not have tow ear the brace, for the most part. I can drive too!! and will test that out tomorrow on my way to PT. I am very happy and elated over the good news. There was great concern I would not generate bone growth or the "grafting" would not take, or worst yet, I would reject it. So far concerns are set aside for the next 8 moths of healing time. What a great Christmas present.

OK who else is tired of turkey leftovers? I ate the last of turkey salad and Douglas will eat the last of soup. A container with dad's name on it is hiding in the freezer. I am sure we all have eaten our body weight in turkey and sides this past week, especially those of us who can not throw away food. So last night we had lamb and spinach pie. I used a recipe from Ina Garten my friend Ginger sent and made some adaptations after opening the Feta container and smelling the stench of rotten cheese....sheep cheese at that. So I used a cooks intuition and replaced feta with ricotta and Parmesan. The crust I used was pie crust because I did not have phyllo. it was great. The lamb marinated and baked in lots of garlic and lemon juice was the tenderest I have tasted and melted in our mouths, was raised by local organic farmer. Leftovers anyone?

Douglas is picking the real last of the garden. I can not believe every tome we think we picked it all something grows back or pops up including nasturtium and calendula flowers and a single rose flower. Isn't mother nature amazing in all her glory? It is now winter and will have nights down int he 20's after tonight so I am sure that is the end of it. My friend Jennifer has cabbage and lots of greens and her chickens still producing eggs. That is good news. She has about five times the garden space we have and I know how fulfilled she must feel, but all gardeners-farmers are ready to slow down for the winter. It is time to turn the soil and place compost and leaves in the growing areas for winter to kill the bacteria and the aeration to begin. We put our leaves in there too which worms love. it is better than burning them. So life-death continues and we go from fall to winter. Time to hibernate and take stock in our hearth. it is a healing and nurturing time and involves little effort, unless you chop wood and carry water.

I am reading "Lacuna" by Barbara Kigsolver and it is wonderful. A visual masterpiece of which I can not put down. I am half way through and I highly recommend it for anyone who loves visually stimulating novels loosely based on history. If you are a fan of her or Gabriel Garcia Marquez then you will adore this fantastic journey taking place around the end of WW! and into mid 1900's in Mexico and in the United States. Frida Khalo and Diego Rivera included in the epic. I can see this as a movie for sure. Check it out.

Blue Funk...........

2009-11-30T19:36:00.002-05:00

Contrary to popular belief I too get the blues, or as my grandma says, the blue funk. I am prone to feeling down in the dumps like everyone else. My positive attitude does sway from time to time and there are dark places where I can travel if allowed. I give myself a day to feel that and that is all. I had one of those days today. It was brightened by a fabulous gift from my Dad-grandfather...........Lawson. He sent gloves which are totally ME and very warm and soft. Not itchy wool or tacky leather. Nice, warm, soft and my sized gloves. It made me smile after a day of the blue funk. It does not happen much but it does happen.

Why? There are many obvious reasons if you know my life. I do overcome much but sometimes there creeps in the grim reaper, even in the best of circumstances. He does not know me or my thoughts and yet he finds me in the most challenging of times and the best of times. The sadness for the planet, our troops, the poor and disengaged, their families, my family, friends and foes, Doug's health, my health, work, business, being separated from loved ones etc. Knowing Douglas has to go back down south to work during the cold of Michigan winter and so many other reasons which really are not of major importance in the grand scheme of things, yet I too am human. My woes are few yet I feel so much.Perhaps an empathetic(pathetic) soul.

My impetus for writing this is not to grovel for pity or gain blessings..........it is to let those of you who do face great sorrow at times to know that I too feel the same. We all have these moments which are unexpected. Sometimes there are real reasons and other times we just get sad. That is the paradox of human nature. Good/evil....sad/happy...rich/wealthy and so on..........It does not end. I encourage myself to feel it all and I share what I feel. Thanks for listening.

Laziness November 29th

2009-11-29T13:40:00.003-05:00

Now I am not prone to laziness although I have nothing against it either. I feel the same way about laziness one might feel about toast and jam; it is fine to eat but nothing to get excited or discouraged about or as Cost Rican's might say "Maso Menos", loosely translated to "so so". It is fine to be lazy if one is tired, sick, unmotivated, worked hard all week and deserves a rest or just for the sake of doing nothing. Some might argue that point as I have close family-friends who feel they are useless if they are not doing something "productive" every single moment. My husband being one of those creatures. He says he is inherently lazy and fights the urge to nap. Ha!. I have never known him to be a slouch or rest on his laurels. In fact, is always working either physically, mentally, on the computer, bouncing ideas off me the Muse, sitting with a note pad in hand or waving his hands in the air and staring into the ether's slightly rambling silent words of mind talk like I would think of Einstein at times of genius....it is a strange friend with whom he talks. It drives him every minute of every day. The drive to be productive stems from financial struggles of past and often present. When you own your own business and you are the only employee it all falls heavy on the shoulders of one. It is a weight to bear and he carries it well. That is until his back gives out or his head-sinuses explode from all the weight he is carrying and the heavy thinking. I gave him two full days off, forced by me, accepted(partially) by him. I have to force him to stop. "But there is so much to do before I go to Tennessee" he says...or wherever the next project may be. In this case Tenn. I hear these words and I wonder to myself "how can he keep it all going on just a few hours of sleep per night?". Which brings me to laziness. Somehow deep in the recesses of our minds we remember our parents telling us that "Idle hands are the devils workshop" and other sayings which never made much sense. I think the guilt was carried over from our WWII surviving parents and/or grandparents who lived through the great depression, and I am not talking about the last administration or the current state of affairs.......but those who truly waited in bread lines for hours to feed a family of ten. They instilled a work ethic with which I agree whole hardheartedly until it causes illness and stress.

I learned the hard way. The body needs rest. There is a fine balance of rest, fun and work. Then there is time for which no title can be given and that is the time we spend with our loved ones, pets, nature or ourselves in a quiet setting, away from noise, work, computers, I-Pods, cell phones, Wi's,blackberry's, radio, TV and all that modern high tech gadgetry which demands most of our attention. What is ironic is that if used properly it could free one to spend more time being lazy or quite. This is our modern dilemma: The fine balance between tech toys, work, play and rest.The tech stuff if used correctly can allow for more of the RR time we so lack in our society. It can offer a chance to eat a meal together with out standing in the kitchen shoveling junk food in our face as a replacement for dinner.That is one thing we DO ensure: we always eat meals sitting together at the dining table, even of there is a note pad present. (I too keep one close by 24 hours a day).

During surgery healing I spend most of my time reclined with book, TV, phone, writing or napping. I know my body wants to heal and if I do not head it's calling I will risk way too much(a hip for starters). I find it easy to lounge with my hot pad. The voices in my head occasionally tell me I should be doing this or that but then I get up on my walker and wonder about a few minutes only to realize I just need to be still, take a siesta or three, read another chapter of "Lacuna", write on my blog and stir the soup I made from scratch after making turkey salad with leftovers, washed the dishes, put leftovers in a container for Dadio's dinner tomorrow night, made breakfast and cleaned out the fridge. Wow those two hours flew by. I can justify my laziness. I hope my true love can learn to justify his once in a blue moon. Oh.......I have a cold too. "bless me". Time to go relax. "Manana"

"Disability My Ass"

2009-11-25T19:40:00.002-05:00

http://www.cafepress.com/coolpositive.330295961

Have fun with this and laugh......it's a good way to cope !!!!!

Gratefulness and lupus and Thanksgiving

2009-11-25T19:14:00.003-05:00

Wow !! I just received the best news today. My nurse Claudia called and said my last labs were perfect !!! I am not on Cell-Cept or anything for lupus. I am only on the minimal steroids for what my adrenals should be making and blood pressure-kidney meds. The rest is supplemental-natural except for sleeping aide when I need for pain or discomfort. This is huge. I am not on immunosuppressives anymore and I am doing great!!! This does not mean remission. I still have a positive Anti-DSDNA test but it is lower than it has been since March from 21 to 13(?) I think that's what she said and some minor symptoms and fatigue.

I was having a moment when she called and a bit pre-occupied with my own "stuff". We all have our moments. It is one of those things we humans have to deal with that animals and plants seemingly are free from......"Human Drama". I got my feelings hurt today and that is all I have to say. It was great to hear Claudia's wise voice telling me my tests came back fabulous !!! Now I can just focus on healing bones and joints with out worrying about kidneys and lupus. I also smelled my mom again today and that is always a good sign.

So Douglas and I got some of the prep complete for tomorrows meal. Dad has the pies and turkey and we roasted chestnuts(yummo),made cranberry-orange sauce,prepped the veggies for the dressing, cooked cornbread and bread for dressing,prepped the mustard green-white bean salad,(picked the greens this am) and managed to have a lamb curry stew to boot from the farmers market. Not bad for a crip. Doug moved furniture and we are ready for the event. Doug's mom sent a lovely flower arrangement which smells so good! and is beautiful. Wish we could have all our family together. Looks like we will be 6 in total. Nina is coming over for breakfast only and the rest of the Gross family will be here around 1:00 for 2 pm dinner.

May you all have good news to share and blessings to count. Much love.........Angela

thankfulness

2009-11-24T13:00:00.003-05:00

"You should be thankful for everything at all times. Realize that all power to think, and speak, and act comes from God, and that He is with you now, guiding and inspiring you."

Paramahansa Yogananda

Well said !!! Have you ever read "Autobiography of a Yogi"?. Good read. My friend Karin sent this quote to me. She is one of my "sisters" and always has wonderful quotes and heartfelt things to say. I am grateful for my sister friends.

I had a great PT session today. My muscles are starting to come back slowly.it takes a lot out of me but in another week or so I think I will turn a corner. No driving yet darn it. Slow steps and patience is what I need now.

Hope all is well with everyone !!!!

2009-11-23T12:08:00.002-05:00

"As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit".
Emmanuel Teney

My friend Susan sent this. Appropriate response to the last posting. That says it all. Now I get a great massage from my friend Renee and energy work. She is so awesome to come here and rub me down. I am very lucky indeed. Hopefully we will find some good green for her in the garden. Just when I think the garden is done it surprises me with more lettuce, greens and radicchio. Always fresh herbs too ! Even flowers are still blooming including one indoor plant my sister gave me which was my moms favorite scent,Patchouli. It is blooming !!! my brother, sister and I have been dreaming of our mom, Donna.Actually she is my grandmother but raised me after my mom, Pam, died of complications resulting form Lupus Nephritis. Donna raised me as her own.Both grandmothers did. She has been in our dreams laughing. I feel her and my mom hanging around. Their love that is. Interesting.

On Faith............Beyond Hope..........

2009-11-22T12:47:00.006-05:00

First let me get through the health update. I am still not 100%, but feel ten times better than I did the past week. I actually did not realize how bad I felt until I was able to finally collapse Thursday eve to present. I purged last night and it felt great. Whatever was in my system seems to be gone for the most part. Low grade fever still persists but I feel human. I even made dinner last night, baked bread and cooked breakfast this morning, which is usually Douglas' Sunday morning thing. I did not eat all my food but it is staying in. I know I did not have the flu but it seemed I had something inside me that my body wanted to Flush OUT...literally. My Dr. and I agree it could have been leftover from Hospital stay during surgery. Half lives of medications mixed with the pain , new parts and chemicals placed into body and constipation will do weird things to a fragile body.

So "On Faith".......Douglas and I had a great conversation this morning that really hit home for us both. Not going into all the details but we realized that faith is beyond hope. Faith is belief under all circumstances, knowing, total trust, complete confidence that all is as it should be and all is OK. Financial burdens or health issues always seem to work out one way or anther and I "Know" this to be true. We are always taken care of. Douglas needed to hear this from me.I needed to speak it.We had spent so many years building a business in Asheville(struggling)while dealing with health challenges and set backs,then moved back to Michigan with no debt, money in the bank and a "hope" that he would build his business here and thrive........"Not" ! The economy tanked, he continued commuting to Asheville for work, all our savings went into house equity (which we have lost much of) and my health took a major shift for the worse only months after we moved into our home.We have questioned our faith and decision to move or at least to move here to Michigan during such challenging times, yet I had no choice medically and now I know we made the right decision based on faith. UM hospital and my Dr. could offer me the best care during a rough 4 years. Had I been in Asheville I doubt I would be writing these words.It would be a different story. I have a team of medical professionals that is the best for my condition. I have family-friends in Michigan who have known me from birth, who are close by and are old pros at helping out and caring for us during long flares and hospital stays.I have to add; our friends in Asheville and family in the south was-is still amazing and supportive beyond belief!!! They just don't live right down the road like they do here, but I wish they were! I fear that after 18 years in Asheville I may have burned out a few caregivers, especially my closest-dearest friends. Even I know when it is time to ask others to step up while weary friends can get a break, whether they think that or not, I felt it.

The point is that Doug and I have been challenged and had to overcome many obstacles in order to survive.We could not have done it with out our faith,friends and family. They always show up! We are grateful and blessed. We talked about hope and prayer. Now we see that "faith" is "beyond hope" and we have moved into total faith and intention. Our intention to live a joy-filled life together with gratitude has always been our plan, yet to speak the words and feel their power is amazing. I saw in my meditation Jesus in a white light protecting us and telling me all is well. "Now that is faith based on intention": To make a decision to truly trust and believe,then put into action our faith. So it is.The rest is just our story unfolding daily. Glad you are here for the ride. Be well.

Last lupus class for season..............

2009-11-20T10:51:00.003-05:00

Last night was really interesting. Our nurse Claudia has co-authored a book for stress management targeted for UM hospital staff, but she shared some insights with us last night which she learned while researching and practicing stress management techniques. She also went into the history of stress and the many facets(physiological,mental,emotional,hormonal and perceived). I think this class should be in every session and maybe allow more time for it.If we can learn to manage our stress and understand the mechanics behind it, we will have more power controlling and releasing it in positive ways thus reducing flares and illness. She also had an interesting daily practice we enjoyed called the "Gratefulness Practice". Every morning when you wake up take your hand and look at it paying attention at first to your thumb and ask yourself what you are grateful for and really feel the gratitude. Then focus attention on your index finger while thinking about all the people you judge or "point your finger at" and send them gratitude and hold them in light or pray for them. Next move to middle finger and pray or hold in light your leaders. Move on to the ring finger and turn your attention to the individuals you choose to pray for. Hold them in light and good intention. Lastly look at your pinky and focus on giving yourself the same light, love, gratitude and prayer. Is that not an easy way to cover all bases? In this way you start off feeling grateful and positive and with loving kindness in your heart.

Many did not show up because they were sick. I knew that might be the case with the flu running rampant. To all of you who are sick............get better soon !!!

My rash is almost 100% gone. It flared a little last night but now I have a low grade fever. So I will keep an eye on that. I never get fevers but when I do they stink. Low grade I can handle. My temp runs around 97.4 so 99.3 seems high to my body but good to feel warm because it is still damp and cool. I am resting this weekend so we are ready for Thanksgiving. PT went well too and I can surely feel it. I like to go and always feel I have accomplished something. My life has been so sedentary it is great to move energy and build muscles. After a few weeks I work on cardio. I love my PTs Claudia and Carol, both fabulous and understand lupus and all I have going on.It is rare !!!They are angels.

Rash seems to be going away or is masked by meds?

2009-11-19T13:53:00.003-05:00

The full body armor of hives is gone and no more allergic reaction at this time. I did get a slight fever yesterday but it went with the rash. The only thing I can think of is we ate some fish that could have been tainted with something? Or who knows what. I looked like a huge red dot and itched like crazy. I slept all day yesterday or watched TV and rested.

I can not complain because so many have the flu. Two people have said they can not make the lupus program tonight, including the co-facilitator. Sad too because it is our last meeting and nurse Ogden is doing a session on de-stressing over holiday season. I was hoping everyone could attend. I have some snacks to take and one of the patients mom's is bringing beverages. I have ordered some sweet and savory snacks from "Stars Cafe"(if you have not been do try it..in west gate center Jackson rd.). It is a local Middle Eastern restaurant down the street that makes the best meat and spinach pies and pastry. So everyone will be rewarded for coming out in the damp cold and driving so far for this course and all the past 5 courses thus far. Dale and I were going to cook food but with my day at hospital yesterday and her with flu we had to think on our feet. Back up plans and being prepared has always been good for me. I always have a back up plan.

By the way......Thank You Angel who sent the surprise check. You have assisted me in perusing my passion for being of service and helping others while doing good for myself. Thank you so much whoever you are. Angels come in all packages !!!!

An unexpected trip to the Dr.'s-hosiptal

2009-11-18T14:52:00.002-05:00

Well just when I feel great something comes along. It is a minor blip on the radar screen. yesterday am I awoke with a horrible-itchy rash. I had been feeling extremely fatigued, ached and had a sore throat with a dry cough but no fever etc. I wondered if i ate something but I could not put my finger on anything unusual in my diet or routine. So after PT it kind of went away. I had taken benodryl and thought it was leaving my system. Then I took a 3 hour nap and awoke still very tired but the rash was still slight. We had a power outage form noon till 9 pm so I did not look in the mirror until I awoke at 4 am itching and found huge hives all over my body. I took two more benodryl and went back to sleep. Then at 8 am I looked in the mirror and it was much worse. It even had a strange pattern like I was scrathec in some areas or there is a straight line of rash in one area and just a patch of hives on another. Weird right? Then I started feeling worse and called Dr who said come in right away. He looked at it and ran a bunch of labs and took urine but truly we still have no idea what I am having an allergic reaction to. I thought it could be shingles but he did not seem to think that. If it is something I have been taking and just created and antibody to then it could cause this or the thought occurred I could be allergic to the bone graft material they put in hip??? No answers and I have a slight fever. I will remain resting so I can make it to therapy in am and our last education-support program is tomorrow eve, I have food to take and want to be there !!!! More benodryl is all he said to do and wait to see what happens.

Miracles do happen

2009-11-16T12:16:00.003-05:00

I have to share something that happened which made me feel optimistic about human kind and the collective good. I recently received, with gratitude, a notice via email that someone wanted to give me gift of money anonymously through a notable and legit organization called "Giving Anonymously". They have been on TV news shows and received great press so far. I checked them out and they are legit. Started by a couple in Bellingham, Washington, an idea was born to give people money, when in need or just because, but with out them knowing who gave it. There might be a person in your community struggling or a woman who wants to start a business to support her children etc. This couple had given a gift to someone in this way and they saw the good that came of it and formed this organization. It is not for profit. Anyone can use their secret gifting service. I was skeptical but I emailed back saying "Yes"! they could send me the check. A week later I got a check from them for X amount(secret) in a hand addressed-stamped envelope with their logo. It is a real check. They ask me to call an 800 number to confirm I got it and to leave a Thank You message for the gifter. I did so. I still have no clue who or why I got this gift but it was extremely generous and all in good timing. Thank you whoever you are from the bottom of my heart.

The story does not end here. I decided I would use half of the money for my needs, bills etc. and will donate the other half. I have two organizations I like to give to. I will donate in honor of my nieces and nephews(Doug and I have a ton) for their Christmas presents because they have too much stuff and I like to instill "giving or tithing" into their holiday tradition. I was not going to be able to anything for them this year. I already made all my adult gifts from the garden herb infused(vinegars,vodka,oils,chutney etc). So that gift took care of holiday giving for me and also will go to The Heifer Foundation and Dr.'s Without Borders. You can check them out on the web. I always give to Heifer as you can really do something with just $10.00. They help families, especially women, in impoverished circumstances, in America and all over the world, to start a home grown agri-business by purchasing livestock for them to use to sell eggs, yarn, milk, cheese, yogurt etc. and when they get baby animals they are supposed to donate a pair to another family in the same situation, thus paying it forward. In this way they feed their families and support neighbors. This raises the entire community economically and personally. "Teach a man to fish he will eat forever".

I am not done yet........I challenge each of you to send Heifer or any organization which "pays it forward" $10.00 dollars. I want you to email and post where you gave. You don't have to give your name but my goal is to inspire the true meaning of this holiday season and in return help people learn how to feed themselves, educate their children, receive medical care etc. Please join me is this. Donate in honor of someone you love. Let's see if we can generate $500.00 in donations by the end of the year. Maybe your company matches donations? Ask them. If you can only give $5.00 that is great too or if you can give $1,000 it is wonderful. Do it for goodness sake. I challenge you.

I had my first field trip outing with my girlfriends yesterday. My dear friend Mary M. had a few of us over for brunch. Kitty picked me up and Douglas came back for me 3 hours later. We ate tasty food, drank a bloody mary and mimosa and laughed, cried and enjoyed a cool day in a warm home filled with love. Three of us recovering from surgery and needed to get get out and about. Thank you Mary for hostessing. I came home and slept two hours. Wearing the brace for three hours while sitting invited a pain pill but now I feel great pain wise. Just wait until PT starts in am. Ouchy!!!!

My nephew-niece in law and soon to be baby boy are doing great at home. She has not birthed yet which is good. Also we are going to spend T-Day with grandma Gross if she feels good that day. Dad is planning to take her to Popa's memorial early in the day and we will take food or he will bring her here. Just need to be with her and family. The Gross; family is very small at this point and it is rare we are all together. We will miss out other family and friends but it feels right.

On Pain.......People ask me how much pain I am in and so forth. my answer is this:" It does hurt and it was an intense surgery. my body needs months to fully recover and heal. I rarely need to take anything but when I do I take the meds so I can stay active and move forward. Night time is rough still.Too many pillows to prop me up, ankle booties to protect heels,have to get up a move due to stiffness and legs cramping and my body aches in other areas so there is that. I do what I can to get comfy and I sleep very deep. I am very tired all the time and fall asleep while ready or watching TV. I know this is when the body heals the most. At times I feel I could stay in bed all day but my body has to move and stretch.So all the healing is in prefect timing. One month from today I was under the knife, body contorted and moved into positions which seem impossible. I still find strange bruises. The tenderness is all there but I can feel it getting better. When the pain gets to level 5 I tale my meds and lay on hot pad. Then I go into coma sleep. Whine!!!

My nephew's wife is in labor too early

2009-11-13T11:12:00.002-05:00

Pray that my nephew Caleb and his wife Holly can keep the baby inside the womb until Wed. which will be 36 weeks. She is dilated and effaced but the contractions stopped. All second hand info but I just wanted to get us all praying for this little boy to wait a little longer.

We had the best roasted chicken and vegetables last night for dinner with chard and collards from garden. Then for dessert we popped corn and put nutri yeast and seaweed on it and it was fantastic. Orville Redembakers natural white popcorn yummo. I was licking my fingers. I cooked too. I am back in the kitchen and it feels so good. The walker actually comes in handy to carry items from fridge to stove and sink etc.

Happy Friday everyone !!!! For those of you who go to the Lupus education Program do not forget next Thursday is our last one and Dale and I are bringing food. Bring your own beverage. We will probably just have water.

I'm Free !!!

2009-11-12T18:33:00.002-05:00

I am officially free form home nursing which means I can go out for breakfast and grocery shopping with my hubby and I can start PT next week, if they can squeeze me in. My therapists schedule's are booked. I may have to see a new therapist for a week or so. I have six weeks of PT with leg brace and walker.

Today Douglas and I got up not so early, went for breakfast to a diner that has a Mediterranean dish with eggs-spinach-feta-tomato-cucumber and olives "pit in" served with pita and they have very good hash browns and corned beef hash. Cheap too !! So we ate and ran errands, had to give blood for labs(twice a week now). We went to Trader Joes and Meijer's and bought a van load of food staples and some prep for holidays. I think we were gone for 4 hours. I was so happy to be out and about. I wore my mask at the lab and used a ton of anti-bacterial lotion. Do not want to get sick. I forgot how much I love to grocery shop and how patient my hubby can be when I drag him along. He is not a shopper. So all went quite well and I feel like I took one huge step towards freedom. Maybe next week I will attempt to drive? Only after PT tells me I am able.

I want to share a new and very hopeful drug to be on the market soon, we hope, for lupus. It has gone through three trials using humans and is now waiting to see if it can apply with the FDA as an approved treatment specifically for Lupus. It would be the first drug for lupus that the Food and Drug Administration (FDA)would approve in 2010—in more than 50 years. Right now only steroids and aspirin(which is rarely used for severe lupus) are approved. Other treatments and medications are used for lupus but not FDA approved specifically for the disease, therefore always considered experimental. Cellcept, Imuram, Plaquenal, anti-inflammatory meds of all sorts and Cytoxan are used to treat the disease, yet are not FDA approved. This creates insurance issues,not to mention they are cytoxic immunosuppresives which create huge risk of infection and long term devastating side effects. To have one future medication targeted at treating lupus is a huge mile stone that I knew I would see before 2112. I have participated in trials of similar medications which did not cut the mustard. This looks very promising. Check this site out....http://www.hgsi.com/latest/human-genome-sciences-and-glaxosmithkline-announce-full-presentation-at-acr-of-positive-phase-3-study-results-for-benlysta-in-systemic-lupus-erythema.html

Enjoy the evening !!!!

OK no more chain emails...

2009-11-10T11:57:00.002-05:00

I sent out a chain recipe exchange and was understandably told by most that they do not do chains. I normally do not either and usually ask people not to even send to me. BUT I am bored here people. Have some sympathy for the babe who is on lock down. I will not send anymore out but the ones who did respond I want to say Thank You and I have got a few great recipes. I am starting a web page, not up yet, called www.freakinrecipes.com. This should offer a bit of humor to cooking and I am inviting you to send me your favorite recipes with your full name attached so I can give you props. I do not know who knows this, it is no secret, that I have been working on a book. The book is a memoir of sorts, shared experiences and my life with lupus and everything else that inspired me but it also revolves around what else? FOOD-GARDENING. This is a natural. So I invite you to send me your favorite or family recipes and I will make sure you get full credit. Funny stories can go along with too. My loved ones are part of me so it makes sense to have you part of the book. No bad or negative stuff just the good and uplifting with some medical information which may not be comfortable to read but will offer insight as to what us lupies go through just to survive and thrive. It will of course have a section about my mom and her life with lupus and it's early ending and how the unusual childhood, to say the least, shaped me too. Food has always been a big part of that.I hope you participate.

Must go but more later because I have some very good news !!! My friend Renee is here to give me a massage. What an angel.

On gratitude and appreciation

2009-11-09T12:33:00.002-05:00

I had a wonderful conversation with Nina about the difference between gratitude and appreciation. Her view, which makes sense to me, is that gratitude it a feeling of overcoming a negative emotion and arriving at the other side(my words). One has to feel gratitude well up deep inside their soul and is a great feeling to have. All of life's lessons can be seen clearly through the eyes of gratitude. Appreciation, on the other hand, is a state of grace in some ways as one is able to move about the world with a new set of glasses where all of life can be appreciated. I would imagine if we all appreciated the world around us it would naturally be a better place. I aspire to feel that sense of ultimate appreciation for life's challenges equally with it's blessings. Sometimes the biggest challenges become our greatest blessing and if we can appreciate that then we have entered a state of grace for a moment. It is a thought to ponder. True appreciation would be void of judgment. To appreciate is to see and love the beauty of that which is being appreciated. So tell someone who you truly appreciate just how much they mean to you. It will make you both feel great ! I appreciate everyone who reads this blog and I feel gratitude for the ability to write in this way.

found these recipes..My mom's version of lasagna

2009-11-09T12:23:00.002-05:00

This is a great meal for fall. It utilizes the abundance of cauliflower and a hearty lasagna which can be prepred easily for a simple yet filling meal. I do cut way back on cheese and use smashed tofu to replace some of the cheese. The bread needs a day to make total but that is mostly time to rise. The actual amount of time you work with the dough is five minutes or so. It is a no-knead bread and oh so tasty. Enjoy!

My Mother's Lasagna…EASY!!! and very different from what we are used to. By Pam Gross

Meat Filling (If you are vegetarian/vegan substitute tofu for cheese and TVP/soysause or veggies for meat)
½ lb. ground sausage
½ ground beef
¾ cup chopped onion
minced garlic clove
1 Tbsp fresh chopped parsley
½ Tbsp each: basil & oregano
1 6-oz. Can tomato paste
Cheese filling
½ cup each: cottage cheese & ricotta cheese
1 egg
¼ cup Parmesan cheese
The rest of the equation
2 cans crescent dinner rolls
sliced or shredded mozzarella cheese
1 Tbsp. milk
1 Tbsp. sesame seeds
1. In a large skillet brown meat, drain. Add remaining meat filling ingredients. Simmer 5 mins.
2. Combine the cheese filling ingredients and set aside.
3. Unroll can of dinner rolls. Lay it out on a baking sheet. Press the seams together so it is one big piece. Spread half of the meat filling down the center leaving a one inch gap from the edge of the dough. Pour cheese filling on top. Then add the remaining meat filling on top of the cheese. Lay the mozzarella on top of the meat filling. Open the second can of rolls and lay it over the top. Again, pinching the seams shut. Pinch the top and bottom dough together to form an enclosed loaf.
4. Brush the top with milk and shake sesame seeds over the top.
5. Bake at 375? oven for 20-25 minutes until golden brown.

Baked Cauliflower:
Pre-heat oven 400 degrees
One head broken into bite size chunks (de-cored)
grease a cookie sheet with canola oil just to cote bottom
Spread out cauliflower and salt-pepper to taste
Sprinkle a Tbs. of oil over top and toss to coat
Bake for 20 minutes turning once or twice
Take out and place in bowl
Add Tbs. fresh lemon juice and Tbs plus capers(small or large) and a tab of butter
Toss well and add more seasonings for your taste and serve hot

The Easiest Bread Recipe
This recipe was from New York Times a while back and has been handed down to me from many hands. I can barely read the copy but the recipe works and it can be amended to add a variety of seasonings and other stuff. I have arthritis and gave up baking bread due to lack of ability to knead. This is a non-knead bread. Anything which is un-needy is good for me.
Mix 3 cups all purpose or half wheat and half white organic flour together in a glass bowl with quarter tsp. active dry yeast and one and quarter tsp. sea salt. Add 1 5/8 cups water and mix until it looks well blended and sticky. Cover with plastic warp and let sit in calm-warm spot for 12-18 hours.
When the surface of dough is bubbly it is ready to gently roll into a ball lightly for a few seconds with extra flour for hands and cover again 15 minutes. Then through flour on a kitchen dish towel (non terry) and roll the dough into your floured hands rolling it into itself forming a ball which will sit on the towel folded end facing down for another 2 hours lightly floured on top and covered with floured towel.
Pre-heat oven to 450 degrees a half hour before baking. Place dough in a well greased casserole dish by gently allowing it to roll off towel into dish. No messing with it will form up when it cooks.
Bake for 30 minutes covered then 20 minutes not covered.
Viola……………Fresh bread. Best left out on wooden cutting board to crust over.

Enjoy....................

Thinking about the big T-Day. My favorite holiday!

2009-11-08T17:04:00.003-05:00

Ideas on meals, food and entertaining……..

As we would love to experience the ability to spend luxurious days and endless evenings growing, raising, nurturing, harvesting and preparing our own meals while looking fabulous and staying fit…………it is an ominous and almost impossible goal for today’s adults, one which I have been blessed to actually attempt yet failed. I spent hours growing, planning, executing and enjoying my own creative recipes for myself, husband and loved ones. I even attempted a few careers in the food industry……….It is great when money, time and energy allow the old world food values on which we were once raised to follow. Those days are few and far between when we actually plan and create nightly and even weekly family meals that do not include fast food or packaged food alternatives to the real deal. Few are the meals we share together with those whom we love. The one connecting bond families and friends once shared is a challenge for even the most culinary geniuses and multi-taskers. I consider myself a good gardener and cook with a knack of bringing people together in a moment of bonding and eating. What is missing is the ability to do it fully……..all parties involved. Thanksgiving is a day devoted to just this, with gratitude.

First we must find a date on the calendar, Thanksgiving, for the chosen group of people to come together, break bread, sip wine and enjoy one others company. Then the menu plan ensues based on what is fresh and in season that week or day in the garden and at market OR food we have "put up' during the growing season. One must be open to adapting recipes when certain foods are not available. Then the right occasion must be matched to the event (holiday, birthday etc) which then sets the theme, location and attire. After invitations are sent and RSVP's received the planning and list making begins. Each person brings one thing to share. There is always one person who is good for store bought flowers, bread, wine or candles which is equally as desired as a dish, yet I love it when each person prepares a specialty of their own. It is fun to taste little bites of many tasty morsels, share recipes and tricks. It is a strong bond we share.

Shopping and budget are the most challenging. Inevitably two or three people will be unable to attend and one person will bring an unexpected guest so I plan for a little extra. "Weather"? I have had dinners postponed for two hours due to heavy rain storms and have given different times to guests, answering the door in my PJ's with a toothbrush hanging out of my mouth. That is when good advanced prep is a blessing. The pre-made platters of appetizers and bowls of olives and nuts are ready to set out with a variety of wine glasses ready for the pick of the guest. Sometimes dog friends enter in a flurry, tails wagging, wet paws spoiling white carpet, but hey, we have to include our furry friends. After all gather usually one hour past the pre set dinner time we begin the line to the kitchen. People grab a chair or stand and chat, of course right in the kitchen where the cook is working while glasses flow with lots of laughs, musical changes and always a sigh when everyone feels full and happily satisfied. On occasion we have been known to experience complete silence. That is a good thing. It is the goal of every home cook and most restaurant chefs; that moment of pure delight and exhalations. I also like having paper and pen available to exchange recipes. When ultimate gastronomic bliss has left us in an altered state and conversation is flowing I can sit back and enjoy watching my husband washing dishes and dishing the dirt after another well planned event pulled off like a pro. Coffee anyone?

Lamb Ragout

2009-11-08T14:46:00.003-05:00

Oh My Goodness!!! yes we had a slow and low cooled lamb ragout (Ragu') last night with a jar of heirloom tomato-zucchini sauce I made this summer from our garden and herbs from garden. Cooked a large lamb steak, bone in with marrow, in my clay pot on 250 for 3 hours. Then baked a butternut from garden and mashed it with spices and butter and a tad of maple syrup. Add sauteed broccoli and you have a party in your mouth. Doug said I should write down what I make and create recipes but I cook with intuition and do not write down or measure. It was really good !!!!

Another beautiful day. People out working in the yard. I may have to go for a short walk around the yard(flat areas) just to move energy and get fresh air. I am still in PJ's though. I did not feel so hot this am. Stomach-bowel issues. I think it is calm now but I am taking it easy. The neighbor almost across the street is having his 4th barn sale. How much stuff can one sell. I looked a few weeks ago and it was mostly junk. "One man's junk is another man's treasure". He did have some nice furniture but definitely used. There are many people stopping by and checking it out.

Gotta go dad and Mary just pulled up on the motorcycle. Great day for a ride.

60 degrees and sunny?

2009-11-07T13:27:00.002-05:00

What a difference a day makes. It is beautiful outside. Doug's doing the last of leaves and I am working in office and cooking. Yes I am cooking. I can get around quite well now in the house and will be free from home nursing and coumadin (blood thinner to avoid clotting after surgery) on Wednesday. Then I am free to be out and about with walker and brace except for protecting myself from the dreaded pandemic. I can not believe how much fear is out there about the flu. The flu has been around for years. Yes people have died in the past and present but the majority of the people infected have a week of feeling weak, nausea, some have diarrhea, body aches and general "sick feeling" but after a week they said they felt fine with ginger ale,Tylenol and chicken soup. So....is it realistic to have people lined up out in the cold rain for five hours, those at highest risk, to get a flu shot? Why does this not make sense? Too many of the people in line are already infected and too many get sick from standing in the cold rain. I will stay home and use all precautions. I am not a candidate for vaccination and would not want it of I could get it. I have never been a fan. Pneumonia or tetanus vac yes. Flu shot NO. Especially live virus. Even my Dr.'s say only do non live virus. Oregano oil can help fight off the H1N1. That is my own personal belief. Too many get sick after the shot and some have died from the shot or at least soon after receiving it. It has not been tested enough in my opinion. I am blessed to have the ability to avoid public. I understand why people who are at risk get it. It is just my own deal.Anything which could challenge or turn on my immune system is not good for me.

Douglas took me for a ride in the car while he ran a few quick errands. It felt good to breath fresh air and see the world outside my bubble. While parked a woman hit the back bumper trying, operative word "Trying", to park. It was two older ladies and she saw me get out of the van to look at the damage. Luckily none found but she had the audacity to wave me away. She sushed me. I just smiled and gave her a thumbs up. She never got out of the car or looked at the possible damage. "Funny people tricks". There is a home UM game today so cars from all over and people driving like maniacs. Ann Arbor is not your regular town when it comes to driving. You can turn left at a one way street during a red light, 4 way stops work great when everyone follows the rules, people do not block driveways or parking lot exits and usually do let drivers into merging traffic, pedestrians always come first and there are many bikers-walkers-runners to be aware of. It is an unspoken language amongst Ann Arborites to drive polite. So we know when there is a game, aside from the flags and UM paraphernalia, by the way people drive. "Go Blue" !!!!

You have to be a rocket scientist...............

2009-11-06T13:47:00.003-05:00

You have to be a rocket scientist to figure out the new Blue Cross Blue Shield part D and Prescription blue plan "explanation of benefits" 2010 booklets for those of us on Medicare. How do elderly people read the small print in two volumes of booklets understand what it is saying and for what they are paying? It is so darn confusing. I am in the medical arena and I have a hard time. Then try to get a person on the phone to explain.....ha! That is a whole other issue. It should not be so difficult. We should be able to understand the rules and regulations of our policies and what exactly we are signing up for in a way a normal human brain can decipher with out a magnifying glass. I know many elderly folks who never signed up for a supplemental insurance to medicare because they did not understand all the options. So they pay way more than they should for medical care and drugs, and they have no help with their 20% co-pay, which is high for Medicare participants. My medical expenses are so high I could rent a house for what I pay out of pocket. I count ALL medical expenses(vitamins, supplements, natural medicine, body care, the medications my plan will not cover, which the list of uncovered meds grows every year, (most of what I take) and for my co-pays. It adds up. Then I pay the monthly premiums which come to about $300 per month for me for Medicare, supplemental with BCBS and the Drug plan. I am not complaining because I have coverage and I need it. I already had two hip replacements this year alone and a shoulder replacement last year, plus many visits to emergency and a few stays in the hospital for lupus related issues, home nursing, chemo-infusions, antibiotic infusions, and all the Dr.'s and specialists I see. Eyes and dental not covered!! I am blessed and have excellent care. I just wish there was a way for regular people to understand exactly what their options are in a simple way and how much it will cost-save in the long run. Keep in mind there is information and assistance on the internet but many elderly and sick folks do not have access or the energy to spend hours on the computer. Any ideas?

So winter is here for sure now; maybe. Douglas likes the heat(desert rat). I awoke last few mornings to a toasty house. The solar panels were reading 100 today and the outside temp now is around 45-48 degrees. We have not started using the main wood stove yet. Usually we wait until after Thanksgiving but maybe earlier this year.
More leaves fall and almost all are gone and another leaf clearing day will happen next few days. The ground is again covered in yellow maple leaves and we can see through the woods. Just in time for hunting season. I can hear the shooting practice already echoing through the fields and woods surrounding our home.

My friend-neighbor Jennifer came over for a girls evening last night. We sat in the dining-family room as the sun went down with our glass of wine and appetizers. It was great to spend some girlfriend time and to get to know her better. The more I know the more I like, respect and admire. I enjoy growing a friendship. Especially one who lives two houses away. Most of my friends live all over the states and Costa Rica. I have a dream to get them all together one day under one roof. Look out mates..................it could get crazy. The last girls vacation I had was the most relaxing vacation I ever had for 4-5 days at the beach in the fall. It was perfect. Too chilly to swim but warm enough to walk the beach and hang out on the large wrap around porch overlooking the Atlantic on one side and the canal on the other. I have Brigid's artwork to show for that one!!

Healing is really speeding up. I feel better every day and stronger. I am on the up curve. BP a little too high and a tad of a urinary infection probably from the catheter. Always happens when I have a catheter. But my kidney Dr. is on it and gave the sample today. No big deal. I have antibiotics for it. I am so happy with how everything is going thus far. I count the blessings in dozens.

Be well !!! and have a great weekend.

To fear or not to fear ????

2009-11-05T13:56:00.002-05:00

Fear was a topic of conversation for Douglas and I yesterday. I watched an Oprah show (don't laugh) and she had four women "step out of their box" and comfort zone which meant facing their fears. They jumped out of an air plane, skinny dipped in the ocean in public-on camera(nudity shots not shown on TV) and they learned how to roller blade for a day and played a professional roller derby game. After-wards they discussed fear and how it holds us back from the incredibly strong women we know ourselves to be deep down in the depths of our soul. Why do we then stop ourselves cold in our tracks when we are faced with those things we fear? It is something I have thought a lot about in the past.

Fear is a good thing when it protects us from real danger. It is intuition and physiology working hand in hand to wake us up to an impending danger. When we are truly in tune with our inner voice we can use this as a tool to keep ourselves safe and sound. When we allow our inner voice to be quieted or we numb ourselves and this voice does not come through. Anxiety takes it's place. Then anxiety turns into a neurotic tendency we fill ourselves with because we lost touch with our intuition. At this point fear takes over in ways that are unreasonable.

This unreasonable fear is of what I speak. This stops us form living life to it's fullest. I asked myself what my greatest fear is. The only thing I could come up with is fear of something happening to Douglas or someone I love. I have faced my fears up to this point. I naturally feel fear when I am getting ready to step on a copper head, find myself lost in downtown Detroit in an area I should not be or I am swimming in the ocean and a shark appears. But the fear of heights, flying, swimming in dark lakes, sleeping in the jungle, the dark, going alone for a moonlight walk or kayak ride, hand gliding,traveling alone, getting sick, surgery, riding fast motorcycles, skinny dipping or any fear one may have has been pretty much erased. Now I do get fearful in the car if I am not driving and there seems to be an crazy driver or the road conditions are bad...........so I guess I do have a fear of car accidents, but it is all I can think of at the moment. Maybe all I have gone through with lupus and as a kid with a sick mom and spending so much time alone I have learned to be a warrior. Always a Tom Boy and daredevil. Risk taking comes naturally yet now I am more cautious and smarter about the kinds of risks I am willing to take. I have seen too many people get hurt and too many lives ruined by one stupid risk. Especially as I grow older and realize there are others who suffer when one get's hurt while taking a risk. Responsibility is my mantra.

The type of fear which grips people in a deadlock and will not let go is something I encourage everyone to face head on. If it is heights you should get on top of the safest highest point near you and get over it or jump from a plane. If yo afraid of someone seeing your body...go running naked down a beach and laugh the entire time for the nut case you appear to be. Let yourself jump outside your box. Dance the polka, play an accordion on main street, dive into the lake in early fall, sing karaoke in front of strangers, take a small risk................get your freak on and let it shine!!! Then you can have a good belly laugh and know life is supposed to be fun and risks are meant to happen in order for us to grow. Think of Amelia flying her plane across the Atlantic and what a rush that must have been. The first time I went hand gliding I was like a kid riding a bike for the first time. No jitter bugs at all just pure joy and laughter. I had to know I could do it. It was the best gift I ever gave myself. Share with me how you stepped out of your fear zone and what gifts came from the experience.

Oh Renee came over Tuesday and gave me an incredible massage and energy work. I feel so much better. I laid on my stomach for the first time and this sore back side was at ease. She rocks !!! I also sleep now with out the large foam triangle pillow and am sleeping with two pillows strategically placed to support and protect my hip-legs. I can also sleep on side with the pillows between my legs. So flippin fabulous. The simple things make a huge difference.

Surgery was 2 weeks today...WOW

2009-11-02T14:28:00.004-05:00

Time flies for sure and in a blue haze too while on these pain meds. I am slowly taking less every day but it hurts more than last one. I think my other joints which are over compensating are hurting more too. I feel very swollen and tight with lots of tender spots. Today the nurse said my blood pressure was high, which it was, as I take it daily and today I peaked too from the pain. I went 8 hours with out pain meds and let it get too intense. Part of me just hates popping pills but I am grateful for them when needed. Itchiness,constipation, foggy brain and all. The upside is I sleep deep for the most part. I have to lie on my back and sleep with a triangle shaped large foam "pillow" between my legs which has straps to strap me in, ensuring I do not move or cross legs or dislocate hip. I don't use the straps. I am not a back sleeper and my heels go numb-ache and ankles swell and hurt really bad. I have to get up several times a night to move and rub the sore spots. I can lay on my good side for a few minutes with the pillow-wedge between my legs and other support pillows. I can not wait to sleep on my side again. OK enough complaining.

A cold front is blowing in and they are calling for snow throughout the week mixed with rain. This happened last November too. We did not get our leaves up due to an unseasonably cold and wet-snowy month. Douglas got most of the leaves up today but there are still 5 maples with leaves. Oh well. We do the best we can. Some just stay over the winter and act as mulch !!

We had a nice visit with the folks yesterday. Mary brought Bee Bim Bop and we chowed down. Dad drove up on his new Harley. Yes I said that right. The Ducati was too uncomfortable and BMW too. He said this is his old man bike and Mary can ride on the back, which she loves to do. His Ducati friends are giving him a hard time. He sold his Triumph too. Now he just has the Rukus, scooter and Harley. I look forward to going on a ride this spring. Maybe a weekend up north? We travel well together and I love to ride. Last summer I would go over and take his Rukus for a ride around their woods but not on the road. The old days of being able to ride by myself are gone but I can be a side rider.

All in all it was a wonderful weekend and I even walked down to the garden with the walker. I was amazed at how much is growing. Not after tonight though. Doug picked a lot of herbs and greens. Time to let it go to the earthworms for winter. I hope you all had a good weekend too!! More later in the week. Nap time.

Passing the time

2009-11-01T12:13:00.002-05:00

Maybe I am in a time warp but it has been much easier for me this round to be home bound and inactive. I am enjoying reading, napping, doing little odd projects in my office or cleaning out drawers. I am getting caught up on some magazines which I won because my air miles ran out so they sent me magazines instead. I am trying to read a novel but it is going very slow. I think I am looking for the perfect read which is not fiction yet has some interesting storyline. I have to get hooked on a book to finish it. My friend is sending 'Lacuna' by Barbara Kingslover which is supposed to be really good. I also want to read a book dad has(about food) of course, I think it's called "Eating"??. I read the first chapter at the lake before surgery and it was about a true story of a food writer who, on this night, was hanging out with Mario Battali and they go through many pieces of "Lardo"(fat) and a case of wine. Hard core for sure. Fall brings out the cook in me more so than any other season. It is the slow and low aromas which fill the home and heart with anticipation of what is to come melting in my mouth. It's odd coming from a skinny chick but I have put on some weight. It's comfortable although we will keep an eye on that for sure. With little exercise and movement I do not want to get into poor shape. I even try doing a lot of deep breathing throughout day and night. I have one of those breathing aspirators they give you in the hospital which is good. By end of December I plan to be back into PT full throttle. For now the small steps are good. Manga !!!

Mary M. stopped by yesterday and made some wonderful smelling soup I have not eaten yet. She is such a sweetie. I love to see her smiling face. Quite an inspiration to me as so many of you are. Dale especially right now. Douglas and I went to see her Friday and Douglas took her sweet dog "Annie" for a walk while Dale and I compared battle wounds. As I was leaving the hospital two weeks ago she was entering. All is good now. Us warrior woman have to stick together.

Douglas feels good enough now (he has not been feeling too good-sympathy pains he says) to work in the studio with us having walkie talkies. I am stable enough to move about and even took my first shower ALONE last night!!!! Now that is accomplishment and a service to human kind if you get my gist. Then we ate lamb ragu from a local farmer with smashed tators and collards. We watched Bram Stocker's "Dracula". No Halloweeners. The whole street was dark except the reflection of the almost full moon against the foggy sky. The yellow leaves appeared white as if it had snowed. Stunning really. Now most leaves have fallen and our neighbor is cutting and blowing one of our maple tree's leaves back into our yard. It has been raining so too wet to blow.

Doug and Dad are going to Grandma's Tuesday to replace concrete driveway and repair a crack going into the basement. That means cleaning out the basement too and getting all Popa's tools and "stuff" out. They will take what they can use and donate the rest. Popa was a pack rat. No telling what they will find. Grandma too. She keeps sending me old articles and jokes she cut out of the paper 20-30 years ago.
I think she is still wrapping her head around her loss. She is walking down memory lane and still not leaving the house much. I wish there was more we would do but she has to heal on her own time. All I can do is listen.

Today Doug's also going to harvest the garden. It is going to get cold this week so we will take what is left and freeze or give away what we can not eat. My friend Renee may come tomorrow and pick some too and give me some much needed body work. I hope the carrots, beets,turnips and radishes keep growing under straw. We made the kale pesto and that is the ticket for saving kale. It will last 6-8 weeks in fridge with no cheese, or you can freeze. Great on pasta, as a spread or in soup. Dad and Mary are coming for a late lunch early dinner later today with Bell Diner's famous "Bee Bim Bop". So I better get up and do my exercises. Lots of love...............

Two week post op check up........

2009-10-29T17:48:00.003-04:00

I met with my surgeon yesterday. We were there for 3 hours and had X-rays. All looks good, yet it will take many months to know if the bone grafting is working. There was one area where they could not get the grafting material(calcium combo) into which will be a dead hole (around sciatic nerve) but that is OK because it will not affect, hopefully, the strength of the good bone holding the ball and socket in place. But not out of the woods yet. For the next month I am to lay low and use the walker and brace at home with little PT except for the very light range of motion and isometrics I do laying on my bed a few times a day. Everything is very fragile, easily dislocated and the pain is still pretty high, like me. Home nursing will continue to come. In a month I go back for next check up. I have to wear the brace at least 6 more weeks so I can use it as a costume Saturday and scare the kids (Robo Babe). For two months I have to use the walker. I can only put so much weight on the new hip. Lots or restrictions of movement. So I move from sitting (as long as I can) to walking around the house to the guest/TV room bed to the chaise in the dining/family room then to my bed for sleep and naps. All well equipped with reachers, grabbers, pillows to prop me up and all the other stuff I need at hand. It will be like a home hospital until the first of the year. I have to say I was expecting only two weeks of this and then back to PT and my life, but we will do as the Dr. ordered and err on the side of caution so we can make this one work and last. I am asking everyone to visualize the bone growing and the hip back to life with full use. The other replaced and necrotic joints are picking up the slack and they are hurting too, so I am laying low. I am grateful that Douglas is home to care for me even though we could use the money if he was working on a project. He has to stay home with me. I need help with much for next two months and no driving for me.

All in all I have to remain positive and laugh at times. Many times.

Miss Jennifer out did herself again. She made stew for a gathering at her house and dropped off some for dinner Tuesday eve. It was "amazing". When I am better we are having a cooking club !!! Kitty and Steven thank you for the meatloaf and chicken drop off and your visiting Kitty !!! You always make me smile.

We will stay home for holidays, obviously. Very low key !!!!

One of my friends whose name I will not mention is in need of some good vibes. Send healing thoughts out to everyone in need and this will help her heal too.

Be well and enjoy the fall colors while they last.

Recipe from Capella Farm's Momma-Farmer-Cook

2009-10-26T10:44:00.003-04:00

Jennifer is my friend-neighbor who is amazing and raises all kinds of animals, 3 very smart and sweet kids, gardens and she, along with her husband Dave, have a CSA farm to boot. They, like us, would like to be self sufficient and make money at farming. They are light years ahead of us so we share secrets and stories and I get to enjoy their fantastic eggs. She sent some pea soup over that was amazing. Here is her recipe she said I could share. In her words:

I cooked 3 - 4 cloves of whole garlic, 2 or 3 small onions, a bunch (maybe 6) carrot tops, fresh pork bone (the left over from a pork shoulder that I had cut the chops off of), 2 smoked shanks, and 2 bay leaves (fresh off the plant). I probably cooked this for 3 - 4 hours (in about 3 or 4 gallons of water?) after that, I strain all through colander, retain all the broth and bay leaves, and scavenge as much meat as possible. I eat the grizzle (maybe that's gross to some but I think it's good for the bones and cartilage), chop up the meat then add the peas (about 3 cups or so) and some thickly chopped carrots and cook for another couple of hours. Then I put it in the cold garage or fridge. The next day I heat it up again and eat it. It's better the second day.

My Dad makes a great pea soup vegetarian style and his is great but the pork in this melted in my mouth and I love big chunky soups. I gave her a kale pesto recipe a nurse shared with me while in hospital so will try that next. Just like regular pesto with no cheese. We have a ton of kale I thought was eaten by bugs or frost bitten, but it's growing strong again.

Douglas and I worked together a bit on The Freakin Universe. Not quite ready yet but we will send an invitation to the online venture he has been working on for over ten years. It is amazing how geeky he has become. I remember showing how to email back in 1997. Funny. Now he has all the gadgets and programs for his work. Funny guy.

A local store wants him to make some artwork for their store. Holidays are coming and leaves are falling. Lots of leaves !!!!! Such a feast for the eyes is fall. This year seems so much brighter than last.

My body is healing nicely. I finally got the long lasting pain med Saturday eve which has been a huge help. The shorter lasting really is just for breakthrough pain. I have many bruises popping up in strange places but I remember that from before. The swelling moves around too which is fun to watch. Like a roving goiter.
I taped up and took a shower with Doug's assistance. My hair was a little greasy but now I feel fresh and waiting for the nurse to call with her schedule. Would like to know sooner than later so we can plan around it. Urggggg. My friend Renee is bringing her massage table over and leaving it so I can get body work. We trade for food from garden. It has worked out nice for me and I feel she loved the fresh food.

Last night was a rough night. Doug has a sinus thingy again and his back has been acting up after three days in hospital chairs and sitting at computer. He was tossing, I was cramping in legs-feet, could not get comfy and had the strangest ongoing dreams.It really does make a huge difference to us as humans when we get a good nights sleep. If we can get our mind to shut down usually the body follows but these days it's hard to shut down. I keep a pad of paper and pen by bedside. When I wake up in am I decipher the notes written that night.Those who know my handwriting, well lets just say, my Dr. complained about it and my pharmacist said it is worse than a Dr.'s. I can use the excuse I have arthritis or a shoulder replacement. It's been bad my whole life.Oh well I have other talents and gifts.......

Let me know how you all are doing. I had three friends who had surgical procedures last week and everyone has something going on in their lives which is challenging or exciting. I am here if you want to chat or brag. If I do not answer I am napping, on the pot, with a nurse or a visitor. Leave a message with time of call and I will get back to you soon.

Love
A

Short and sweet

2009-10-25T13:19:00.003-04:00

I am sorry for the short blog reports last few days. Hard to sit and type for too long. Douglas is back at work on the computer and in office and lots to do around casa and taking care of me. I am low maintenance............right? Right!?

It is Sunday afternoon and yesterday was a little busy here.Great to see loved ones and an old nurse I have not seen in a while. I am so grateful for those who cooked for me last few days !!! OMG the food has been fabulous and nurturing and your efforts do not go unnoticed. I will be there for you when you need it in return. Douglas cranked out a gourmet brunch today; Salmon with eggs and potatoes with Zingerman's 8 grain bread and chopped liver. Have to get my iron back up there. So I ate way too much. The leaves continue to stun me and I feel entranced in the beauty.

I see the surgeon wed. I am hoping to be able to start PT away from home in a week !!! It might be too adventurous. I am OK with being indoors and lounging at this point. Pain is under control and lots to read and watch the food channel lessons and movies. I am reading a book called "The Brief Wondrous Life if Oscar Wao" Constance sent it to me. Very interesting novel about an American Dominican immigrant. Rough language and reality but an intriguing read with real history added in here and there. The author, Junot Diaz" won a Pulitzer Prize. I will have to finish Chesapeake later. I tend to fall asleep after a few pages.

For those of you who have been confused as to what they actually did in surgery I will attempt to go back in time and bring you up to snuff: Back in 1990 when I first learned the steroids had caused osteo necrosis, also known as avascular necrosis or AVN(death of bone),the surgeon in NC where I lived at the time decided to do a left femur core decompression which was a pencil size drill into the center-anterior femur about mid thigh. The idea is that bone would grow back due to blood flowing to that area. It was unsuccessful due to the amount of loss and blood vessels-arteries were clogged or too swollen from steroids to reach the femur(thigh bone) femoral head and acetabulum (ball and socket)of hip joint. The femur is the longest bone in the body and it takes strong-healthy femoral arty-vein to get blood to the tip of it. Any swelling or calcification will impede blood flow thus causing death(necrosis). That summer I came back to Ann Arbor and had the left hip totally replaced by a sports orthopedic surgeon.I was not impressed by his work(not at UM). I later returned to Asheville where six months later I had my right hip replaced by a fabulous surgeon who no longer practices. I had no insurance and he paid for it himself. I am forever in Dr. Smith's debt. This was a total success.I have since had the left one revised two more times. This last one was a right revision but only the plastic lining at socket needed to be replaced due to a large crack allowing synovial-joint fluid and debris to collect in the posterior region behind the metal ball and plastic sicket where bone should have been. No wonder they could not find synovial fluid when they did a biopsy a few months back. This is what we fixed with a filling compound made of two types of calcium to stimulate growth. It will take while to know if it is working and really we may never know. If it hurts down the road we will know it needs further repair-revision. I could keep it for life? So that is the scoop. It was my 6th joint replacement to date. There are necrotic areas in other parts of my body, knees being the worst. We will try the drilling in the right knee later next year. I have about one year of healing-rehab to get both hips up to snuff. For the next 8 weeks I wear a very uncomfortable brace. If you see me on a cane, walker or in a wheelchair just know I am taking care of myself. Lupus is doing great shhhhhh.................Hopeful !!!!I hope none of you Lupies ever have to experience this.

As many of you know I am writing a book of sorts and this blog is a journal from which I will extract much of the personal information. Sometimes I write exactly what I am feeling or doing. It is my way of sharing with my loved ones, and eventually the world, what it is like to thrive with lupus. If you know someone who has lupus I encourage you to get them a journal or blog and inspire them to write. It really is a great tool for many reasons.

Make it a great day for you and all around you !!! Love and blessings.......Angela

Saturday October 24

2009-10-24T10:26:00.002-04:00

Rainy fall day but so beautiful with all the colors of fall's glory. It will be a very busy day. We have Ling Ling, Nina's Shitzu, for the day and she loves to snuggle with me(I love to snuggle with her). She fits in my hand or pocket. The nurse will be here between 2-4 pm and Douglas will use that time to run errands. Then my neighbor friend Jennifer made soup and maybe kale and will enjoy that for dinner ! Douglas will be happy to have prepared food with out me trying to direct him. Mary Mandeville will come by too with soup so that is fabulous ! Thank you so much everyone !!!!

I am still slow and sore. My home PT Sally Richardson and I decided that with all my experience and restrictions I can do on my own and save time and money. Then next Wed. I see the surgeon and tell me when I can go to land PT, move about and maybe drive. I have to wear the brace for 8 weeks. Hard to move about with this on. I know I will have itchy feet to get out and about. Good thing I have an electric chair and dad bought me a ramp for the van and it works.

Tell me how you are doing. Love to everyone !!!!! Angela

Still in a Daze..............

2009-10-23T19:02:00.002-04:00

Hi !
I am home and trying to catch up on sleep and rest.The leaves have started turning all spectrum of fall leafage color from vibrant green to yellow to orange to purple and then brown. It is lovely !

I will write more tomorrow. resting.........Love and Blessings to all. Angela

2009-10-22T17:24:00.002-04:00

Angela is hOMe from the hospital, All Is Good.
Getting settled for the next few days.
Will update tomorrow.
('sigh of relief' inserted here)

Partial moon rising

2009-10-21T20:43:00.004-04:00

Oh boy.........trying to be fitted for a leg brace is quite interesting in a hospital gown with no panties. I was mooning everyone. Now that the catheter is out I actually can wear real people clothes !!!!! Whoo Whoo !! The brace has been fixed and fitted so I did PT a few times today walking about with the walker. It is the small steps that feel so good. I am feeling ready to go home. I get out of the brink tomorrow !!!! My bed is waiting.

Doogie is staying with me tonight in the room. A very sweet nurse assistant found a recliner for him. I have to have his assistance to get to the bathroom and other stuff. We are both looking forward to getting back home and yet feel blessed this stay has been really good and I had a private room with really good nurses and all is good except what they call food? Really?

Thank you for all the emails. Love to all. One of us will update tomorrow. Hugs !!!! Angela-Robo Babe.

care and feeding of me.....angela (under the influence-d)

2009-10-20T12:26:00.008-04:00

hi! ya'll. thank you for the light, prayers, good vibes,calls,emails and cards sent our way. i am doing great and waiting for a brace to be made for me to wear 8 weeks while moving about and then tonight i can start mild pt. still have a "port of sorts for IV steroids and antibiotics until the blood culture comes back. i am still with pe-pe catheter but bathed, sheets cleaned and well fed and watered. doug slept at the med-inn here at the hospital which is convenient and one step up from motel 8 yet just down the hall so he attempts to sleep and geek.
all is good in the slammer.

my surgeon, dr. blaha, said the bone which died(disappeared) behind the prosthetic acetabulum was filled with calcium fluoride and calcium phosphate.better than the old cadaver bone they have used in past surgeries. he said the only way to know if it grows bone is in 6 months doing a CT scan but we both agreed not to do one due to too much radiation....the old glow in the dark trick. if it starts to loosen or hurt we will know it did not work, in which case they would redo the ball or i could keep the whole kit and kabuttle for years.

i asked if we could inject that into the knees, left shoulder and other necrotic areas where bone has died. he said there is one surgeon at St.Jude children hospital down south and they have only tried it in 100 people, two who he sent there from here. he said the results may not have been worth the cost and effort. he still wants to hold off until it hurts so much it is debilitating (some days they do) but we decided no more surgery until the hips have fully healed and then we would try a more conservative approach called drilling which can stimulate growth naturally by making holes in bone where osteometabolism would naturally do it's thing. i have one before but it was for the hip and i was too far gone. the knees still have a fighting chance (all good). the various spots on other bones do not seem to be of concern and i have actually started bone growth even "they" said it would not happen. these times they are a changing.

doogie will keep you posted as i go in and out of lala land and a knows at the door by some hospital staffers every fifteen minutes while beepers are going off. please do not call unitl i get home. crazy little room and doogie has computer-phone in some zones. plus it seems like the dr.'salways come in when the phone is ringing. this is the best from of comunication unless you want to visit then call ahead. my room number phone is 734-936-5409.

nina you said you wanted to bring food-juice? i do have some cravings......so you can call me. zingermans chopped liver-matza ball soup,co-op kale,salad,mashed sweet or regular potatoes, winter squash, plain baked tofu or savory with miso giner/garlic and roast chicken and anything home cooked from produce station is on radar for anytime. maybe when i get home..........or here too. carrot-ginger-green apple-lemon-beet juice always great ! i will remburse. but do call first as meals are strange here and never know when they come or what to expect. thank you for the book. i know i am a butt head.........but i am your butt head !Private joke.inspirational stories.

much love to everyone and know you are all in my prayers and heart.

love
angela ( aka robobabe ) i love my hubbies humor and is wonderful !

hubby report.2

2009-10-19T19:09:00.003-04:00

Out of surgery - on way to recovery.

The liner to the hip socket was cracked and replaced.

Ball/fixture is anchored well into the femur with no loosening. No need to replace.

Cup in good shape, still anchored well into the 'perimeter' of the socket.

Significant bone loss 'behind' cup, loss of socket mass . The void was 'liquid filled' with debris which acted as an abrasive wearing down the interior space...pain factor.

Doc- "Data shows best to not remove and replace 'cup' so to not disturb that bone which is holding the existing cup in place". They drained the liquid and packed the void (through holes in the cup) with 'plaster' type bone growth material which stimulates bone growth exceptionally well in animals... 'humans, a significant increase, yet to be fully determined.

Her mobility will be just as good as before surgery with a decrease of pain.
If bone additive/growth stimulant does not 'take' her existing socket/ball attachment will stay in place for as long as it does.... various complications from there on.

He's siding with the data showing positive bone growth, the strength of the existing bone supporting the prosthesis's, Angela's age and "outlook". Diet, exercise and one heck of a positive attitude.

I side with the Doc.

We are so lucky......

hubby reporting:

2009-10-19T17:08:00.004-04:00

Angela went in at 3:30 pm. Looks like she may be getting a revision, not a full replacement... great news! Glad they have spare parts for 20 yr old equipment. I was concerned I'd have to weld something together from my studio... 2+hours to go....

The summer that never happened..............harvest time

2009-10-06T14:32:00.003-04:00

Wow it is cold and we are running the hot pad on our bed at night. Even had a fire in the fireplace Saturday. I am bundled up like a Christmas package sent by fed Ex, all layered up in scarves, pulse warmers, leg warmers and whatever I can find to keep my extremities warm. Lupus does that. The circulation down to the lower legs and arms plus head leaves a lot to be desired.

Two weeks from surgery. I am counting the days. Feel good about it though. Especially after a grueling weak of PT doing deep tissue work and realizing that until I get this operation my sacrum and pelvis continue to go out. This causes all kinds of issues. Hard to do a whole lot without throwing it out of alignment.

The Lupus Education program is going well. I am happy to see the same faces return and concerned about the faces who don't. We are all fighting colds and getting over allergies. Now the flu has all in a tizzy. I am not a vaccination kind of gal. The last one I got was for pneumonia and not a live virus. Benign yet i cringed to get it. I have never had a flu vaccination. Never will either. I see people get sicker from that than the flu. To each her own. I take all precautions, use sanitizer like crazy, do not touch or get near sick people, wear a mask if I feel vulnerable, wash my hands often and long and keep tissue with me at all times. If you do get the vaccination make sure you are getting the one which is dead and not live. Oregano oil is also an agent which can help you recover from HINI. The regular American flu is best treated with fresh ginger tea, chicken or Matzo Ball Soup, warmth, rest, lots of fluids(water), some sort of inhaling essential oils like eucalyptus, camphor or peppermint, vit. C, Zinc and if you do not have an auto-immune disorder you can take lots of echinacea tincture. Tylenol cold or some pain relive does not hurt. But time is what is needed so buckle up and enjoy the rest. If your fever gets above 102 go to the emergency room after you have tried ice baths and lots of cooling fluids.
Remember though to wear a mask so you do not get others sick.

Douglas and I went out to a local diner for breakfast. 3.99 plus coffee and juice. It is amazing how many people are still eating out but ordering the least expensive item on the menu. I bet the dollar menu at McDonalds is on over load. Would be interesting to do a poll on this. I put a lot of thought into food. I feel such a pull to continue my commitment to support local farmers, growers, food purveyors, neighbors with mom and pop operations etc. My neighbor and I spoke of this yesterday while she was making a time consuming chutney. I tasted the Ketchup she made which was fabulous and a quickie recipe from her grandma which I will attempt to make this weekend. I am making the chutney tonight with green tomatoes from our garden. Tomato season for us is over but farmers who have green houses still selling at the market tomorrow and Saturday. I am also going to attempt mustard green-cabbage kraut. I made a cabbage-tomato chow chow this weekend which was fabulous. But my friend and i agree,Jennifer the neighbor who has a CSA and eggs, decided it takes a tremendous amount of work and is very much a commitment to not just growing and preserving your food but buying local and from farmers directly. It costs more in the short term but in the long run it is much less than you expect. Take peppers for instance. In the winter you pay 4.99 lb for a red pepper(un-organic from Mexico. If you buy a bushel of peppers from a local farmer and freeze them or you grow your own and preserve somehow you save money because in peak season your paying a quarter of the price. Same with apples, tomatoes etc. But who has the time? Plenty of people take the time or they pay someone to do it if they can afford it. Once you make the commitment it all falls into place in about 3-4 years. You realize you have a network of growers, farmers and others who are into trading and sharing, they might buy something you grow or make, your community is thriving because you are keeping your money local and small businesses can survive with little shipping costs. It all makes sense. I call it bio dynamic living some call it permaculture or sustainable farming. Even in Detroit groups and urban gardens are growing raised beds on toxic land while cleaning the land for larger plots down the road. people are making food form these gardens for the poor, sick and elderly while teaching urban kids all about food. They learn a trade too. How cool is that? I realize it is not feasible for most families yet every bit helps. Take a drive in the country near your home and stop at a couple produce stands or farms. Pick apples with your kids them make applesauce. In this way the kids have a fun day in the country, learn about where their food comes from, supports local economy, they learn how hard it is to make real applesauce and how very good it is and have fun. My sister does this with her girls and they understand. Maybe instead of a lemon-aide stand next summer you have a produce stand?

Happy harvest

Butterfly Walk Video new edition.............

2009-10-01T11:44:00.001-04:00

www.lupusadvocacy.org

forgot to share recipes.."So Freakin Good"

2009-09-30T19:55:00.004-04:00

Squash soup:
Cut up butternut squash into two inch chunks skin on-de-seeded, with one large onion quartered and a cup of mushrooms with one clove or two of garlic. Roast in oven with olive oil, salt and cracked pepper for 30 minutes at 400. Then heat up a quart of chicken or veggie stock on the stove and add the veggies to simmer with 1-2 Tbs. chopped parsley or cilantro and let meld. Put all into a blender or use your self blender handle to make soft. Serve with great bread and butter. I also made a salad of mixed bitter greens(mustard, parsley, Chinese cabbage etc.) Added to the top was a can of black eyed peas, Tbs. Dijon, Tbs. red wine vinegar, 2 Tbs. olive oil and salt-pepper to taste. I also added a little maple syrup to cut the acidity and small chopped red onion and a clove of chopped garlic. This combined tossed with the greens was a fabulous way to mix it up with the squash soup. A total fall meal. Martha Stewart's food magazine was to blame. So Freakin Good !!!!!!! I forgot to mention the butter was from Vermont Creamery I think? I was gifted the butter bu a friend who bought it at "The Produce Station" in Ann Arbor. The freakin best butter ever, and I am not a dairy person !!!!!! But this is fabulous. Thank you Steven and Kitty.

Old Jack Frost??????

2009-09-30T19:41:00.002-04:00

Yes we are having a frost tonight with temps around 30 degrees F. Can you believe this? The cold summer has brought a cold fall. I felt a chill yesterday in my neck and head and woke up thinking allergies but I fear a cold is trying to settle in my bones. I am taking precautions. The 90% full moon does not help. I never sleep the two days prior to full moon???? Have you experienced this? Most emergency rooms do and police departments as well. Good thing we know to plan. Halloween will be interesting this year as it will have full moon.

So I covered the gardens tender crops and let the rest do their thing. Tomorrow will be sunny and mild with 55-65 temps. Hopefully I saved the lettuce and greens plus peppers still trying to produce. I do not worry about winter squash as they are tough and winter greens. We will at least have green tomatoes for frying?

Tomorrow is a class night for lupus education. Many people have responded this week so it will be interesting. I will be on my good game hopefully. Lots of preparation and rest.

Douglas finished a video comprised of many peoples photographs and video images of the UM Lupus Butterfly Walk. Go to www.lupusadvocacy.org to see. I cry every time I watch it. Hormones perhaps yet touching non the less.

Started two books. I have one medical, of course, and one fun. The medical is called " The High Blood Pressure Hoax". Very interesting and informative. The other is "The Time travelers Wife". I had to pay the library 2 bucks for two weeks because so many people want to read it. So that is my reading aside from other publications, local and abroad, I read for special interest. I am always looking for a good read so pass along any books which are riveting.

Happy fall Yall...........................

"LSD"......Lupus takes a Beatle icon................

2009-09-29T18:05:00.002-04:00

Lucy Vodden, who provided the backdrop for the Beatles iconic song "Lucy in the Sky with Diamonds," has died after a long battle with lupus at the ripe young age of 46.

Her death was announced Monday September 28, 2009 by St. Thomas' Hospital in London, where she had been treated for the chronic disease for more than five years, and by her husband, Ross Vodden. Time of death unknown.

Lucy's connection to the Beatles dates back to when she was 4 years old went to school with Julian Lennon, John Lennon's eldest son. Julian came home with an image of "Lucy In The Sky With Diamonds" Hence the song. Child's play turned fame song.

John Lennon, along with other Beatles members, were collecting material for the album "Sgt. Pepper's Lonely Hearts Club Band." John took the image and created "Lucy In The Sky With Diamonds" (IE.. "LSD") referencing Lucy In The Sky With Diamonds. Amazing how people want to assume the worst. As ironic as it is, I now refer to the song as "Lupus In the Sky with Diamonds." In honor of Lucy.

Lucy and Julian lost touch, but they reconnected when he tried to help her cope with the disease through gardening and other means of joy, by emailing uplifting emails, sending her flowers and gardening vouchers as she was an avid gardener which brought her great joy they both shared as a hobby.

I would like to honor her and all those who have lost their lives to this sometimes debilitating and life threatening disease which is treatable and not curable. The odds are in our favor as patients but it takes this kinds of awareness, unfortunately, to bring people to the point of caring. Some speculate if Michael Jackson had Lupus???? Even other stars I will not mention. If one does have Lupus and has the ability to reach the masses it is your calling and opportunity to help find a cure and raise awareness.

Our blessings and prayers go out to Lucy's family and all who suffered this great loss. Up above they are watching and know we will fight and find a cure !!!!!

Angela

2009-09-24T12:29:00.000-04:00

playing catchup............

2009-09-24T11:59:00.003-04:00

Hi all. I have been spending fall with my hubby getting things done around the casa and yard-garden. Had a bumper crop of tomatoes late in season and new fall garden is coming in strong. I have been canning and putting up food for winter and holidays. I can not tell you how rewarding it is. I am watching our new front garden walk way of grasses, lavender and flowers growing like crazy. So much so we may have to move some. Hostas need a new home too in the shade. They are huge but getting too much sun and we have decided to move them to the side of the house by our driveway where nothing grows under the large maple. Douglas and our neighbor cut and split wood while his son Nathan kept a nice bon fire going in the metal pit. Then the whole family(neighbors two doors down) came over for a pot luck and fire. It was a great way to end the weekend. It is wonderful having such great neighbors. They heat with wood too so they got two loads.

The lupus education-support program is going well. we had our second session last week. Next week we are having one on avoiding flares and sending people home with homework. The last session I teach will be on what to do when you are in a flare. Part of preparing for this is helping patients get their affairs in order. Emergency plans so to speak. Who to call on, what can folks do to help, advance directives etc. All the stuff we like to put off. So I am hoping this will be a good home work assignment with max benefits.

Which leads me to the next thing. I am having surgery on right hip (2nd replacement) October 19th. I will be in longer this time. Feel free to visit as the blog will direct you when is good time and where I am etc. Doug will keep you abreast, as you know, with his humor. You have his cell and can reach him if needed. The hospital also will tell you where I am. We are going for a private room but I may not get one??? It depends on the day. Mondays are usually pretty good days to get private rooms. Many patients leave on Sundays or over the weekend. So I am hanging pretty well. People have asked if they can help or visit? Douglas will be here. He can always use help in the food department grocery shopping, soups and comfort food while I am in and after I get home. Easy things to heat up and fruit, nuts etc. Beer. Just kidding, well, not really, It takes the edge off I am sure. I will be well cared for with home nursing and Douglas. If I need anything I will let you know. There may be garden work and food to harvest for those of you who like that type of work and healthy food to take home. I am always up for a good book to read-borrow too and relaxing music especially cello. Movies are always good too.

I would like to share a quote my friend Chris sent me by Sir William Osler (1849-1919) when asked the secret to a long and full life? "Contract a chronic, terminal disease and take care of it". Odd quote but you get the point. In class last week a nurse made an observation and commented on how some patients seem to see lupus as a gift and I totally agreed. It forces one to take stock in their lives a bit more than healthy folk. One has to live healthier more vibrant lives to survive. It is a strange gift with many miracles and to "Take care of it" means to heal the deeper parts of ourselves. In this way we leave the earth with a little more wisdom had we not been forced to take care of it. Good Karma !!!!

Time has come

2009-09-08T18:46:00.003-04:00

The UM Lupus Education-Support Program was a success. I feel we had just the right amount of patients and "educators". It was a night which may end up being the first of many or it will be it's "Fall Series" as it it is and that is all? In any direction I am feeling very fulfilled by the looks on the people's faces as they heard words of hope ans support. I saw people feel a kin-ship to one another and an exchange of numbers. This is all good. I also spoke with two women who are focused on the areas of health disparities or the under served in health care. The fact is that people of color, especially African Americans, have a higher prevalence of lupus than white Euros, YET, they often do not get diagnosed due to lack of medical care within inner cities and rural areas. When I say "Those" it makes me cringe like you can not imagine. It makes me sick to say that if you are black in a large city with little income or poor in a rural area you may not have insurance or the ability to find a Dr. to help you find a diagnoses, which is very, very , very expensive !!! That word is in and of itself a fear mechanism to tell people who do not have insurance an opportunity to NOT get that health check up or labs to see why they may feel sick. It is well known that education and health care is at a low spot when it comes to people of lower income, single mothers, single fathers, rural farmers, youth who are in school with young children, elderly who do not have helpers, Blacks, Native Americans, The poor and Homeless, Latinos and all those "Others" who have no insurance or the ability to get health care for whatever the reason. Many middle income whites in the "Burbs" are feeling the same issues. it is a problem we all face. I saw this more so than ever and I want to do something yet feel helpless. Some folks will fall through the cracks and that Su__s. I feel hope because we touched a few and they will touch a few and so it goes. It seems to me the way to health-well being and peace is through offering it to others while staying true to our own highest health and well being. We all do our part!

On that note my honey is home (happily) and I am cooking and plucking from the garden and getting ready to embark on a canning experience from the harvests. Lord let me not poison. I have been very fearful of canning and so I have done pickling and other forms of preserving.........But now I venture into what I knew as a child. Canning. The freezer has been our friend and now I must put up cans of food in the cellar. I feel a need to know and accomplish this as an adult. As a child I only did the "work" not the actual cleaning, preparing,sanitizing etc.
I promise not to give Christmas-Solstice presents if they are not totally safe. You probably will get something with alcohol or vinegar. SAFE!!

Be Well !!!!

The sun also rises

2009-09-03T11:22:00.002-04:00

Today is the first in a six series lupus education-support program at UM Hospital coordinated by me and retired Dr. Dale Dedrick who also has lupus. I cried last night because I was so moved by the phone calls and emails from patients and parents of youth who have been diagnosed who are not only coming, but 6 from Flint! This warms my heart. All it takes is helping one person and paying that forward. Three of the Dr;s-researchers will speak about advances, research, our clinic and more. The next three will be taught by Dale and I. The last two by a PT, Beth Wiggert and Nurse Claudia Ogden. Attached is a flyer for those of you desiring to come. I am so happy years of hard work paid off and people kept saying I would never get into the UM hospital system with out a medical degree. Showed them.

Still in small flare and laying low. I am a bit weak, fatigued and shaky. Doug busy too but well.

University of Michigan Lupus Education and Support Program

The Fall Series of the University of Michigan Lupus Education and Support Program begins September 3, 2009, from 6:00 p.m. to 7:30 p.m. at the University of Michigan Health System on the 3rd floor of Taubman across from Reception D in the offices of Internal Medicine, Kelly Conference Room. Follow signs.

This series will be on the first and third Thursdays from September 3^rd to November 19^th intended to provide educational information and support to patients and families with Lupus.

Some of the topics included during this program include:

Sept. 3rd: "Lupus 101-The Basics" Dr. Dale Dedrick and Angela Madaras, Lupus Program Coordinators: Speakers include: Dr." Joseph McCune, Patricia Cagnoli and Wendy Marder from The U-M Lupus Program-Clinic.
Sept. 17th "Best Daily Life" Dr. Dale Dedrick and Angela Madaras, Lupus Program Coordinators. Positive tools for living a full-balanced life.
Oct. 1st "Avoiding Flares" Angela Madaras and Dr. Dedrick.
Oct. 15th "Living With a Flare" Dr. Dedrick and Angela Madaras.
Nov. 5th "Exercise for All Levels of Activity" Physical therapist from the U-M Spine Clinic, Beth Wiggert.
Nov. 19th "Stress Management" U-M Holistic Nurse, Claudia Ogden with UM Lupus Clinic. Dress comfortably.

Registration Fee:

There is no registration or fee for participating in this program. Snacks and drinks will be provided at the first and last meeting; however, participants can bring food or drink with them to the program. A peer-support meeting is encouraged for participants who want to continue the meeting at the U-M Cafeteria after the sessions or on their own.

Parking:

Parking is available in Taubman Center Lot A at the U-M Health System where participants can enter through the elevators to third floor or through the main entrance with signs directing to the room. Valet parking is available at main entrance for $5.00. Wheel chairs are also available at main entrance.

For more information please contact Angela Madaras at (734) 761-9267, by email at angelamadaras@gmail.com, or on the web at www.med.umich.edu/lupus.

Please sign the attendance list before you leave and include contact information and your address-email if you wish to be on our mailing list. In the event the classes get too large and need to move to another room we need a way to reach you by phone or email.

The world seems upside down

2009-08-29T14:22:00.002-04:00

My dear friend Chris who has two lovely daughters of adult age just informed me(actually his spouse Brigid) just informed me that his daughter Nora is very sick on life support and dialysis with acute pancreatic and high fevers. Unknown cause. Please hold her and her loved ones in your prayers and heart. Her cousin recently died as well and they lived together in DC area? I am speechless.

As for my health I am feeling quite blessed in this moment. Tired and fatigued beyond belief but pain level dropped, inflammation mostly gone and flare seems to be leaving as my labs looked good. I can begin reducing meds now. Kidneys are doing great and that is wonderful. I just got too much sun and resting is all I can do to feel better. Which is good because the fall Lupus education program I am co-teaching at the UM Hospital starts Thursday.

Doug is well. Garden full. I am making Christmas present from the harvest. No more buying gifts.

Nora, hang in there darling you are a strong and powerful woman with an incredible heart and soul. We need you here! Your family needs you.

Quite the week

2009-08-22T11:31:00.002-04:00

Last Monday my friend Mary W. came for a one night visit which was great to see her if only for a few hours. She is a very wonderful friend. It was a most muggy and hot day with light rain and 84% humidity! So we had the air on and decided to go out to the Zingeram's Roadhouse for a late lunch because I am in a flare and too pooped to cook. I was craving their meatloaf but they did not have it so I indulged in BBQ with collards and mashed potatoes. Comfort food. While there my Dr. called to see if I could come into the hospital to address the flare. I told him I could come on Wed. and so I did. Yes I am in a flare darn it and now back on 2,000 mg Cell Cept and 60 mg Hydro cortisone, tapering slowly until this passes as it always does! Too much sun it appears. Most patients do tend to flare at the end of the summer so I am prepared. I think it happened at the walk. I was out in the sun too much no matter how much protection I had or sitting under tent. The reflective rays and 94 degree heat was too much for three of us who now are "sick". This week was also a busy one with lots of appointments, paperwork piling up, book keeping, helping Douglas on his project and planning the Lupus education-Support Program to begin September 3rd. The flyer-mailers are late getting out. I wanted so badly to get them out last week but UM had other deadlines and I made many changes to the proof. Lesson learned and now for future ones we have a template. Yesterday I only ran out briefly to the store and worked on the computer till 3:00, rested and worked in garden until dad came by to check me. We sat on the patio and it was a beautiful evening with a light breeze and slight overcast. I gave him a sample of all the pickles I made( carrot-ginger-garlic, cukes and green beans). Sent him home with some salad makings. I love to share from the garden.

Popa's "memorial" was Tuesday in Holly, Michigan at the National Cemetery. It is all military cemetery and was quite filled. I guess there are many WW2 vets passing plus they take veterans from every overseas war. The Honor Guard had a committal service with the gun salute and flag ceremony. I could not help but cry. I cried because I knew Popa would be so happy to know we followed his wishes. The setting was amazing. A lovely pavilion with a podium back dropped by a lovely lake, seagulls and a wooded area. Very short and sweet. I got home around 4 pm and crashed.

Wednesday I spent all day on the computer with projects and at 4:30 I had an appointment at the hospital and lab. I got home around 6:30. I gardened for a bit and prepared a wonderful meal from the garden. Pesto my niece made with chicken, onions, greens and garlic all from garden. Yumo. In a week I will have more food than I can handle so I guess it's time to can-freeze and make herb pestos.

Thursday was spent doing office work and more lupus education planning. It rained like crazy. Then at 2:00 I had my teeth cleaned and two fillings repaired which were wearing down, cracked and had some sharp edges. I took my pre-dental antibiotic like a good girl and had no allergic reaction. I know those of us with joint replacements dread going to the dentist due to the fact we have to take antibiotic. Believe me you do not want to have a bacterial infection go from your mouth into a joint prosthetic. It means big trouble. I was concerned after so many allergies to antibiotics that I would have issues but Zythromycin did the trick and that is good for me to know in the future. If I could not take that there would be one other option and that is it. Bummer. So that is good news.

Today I am doing nothing ! I am not even going to work in the garden. I can do that tomorrow. I will walk around and pick a few things for my friend Mary Mandeville because I am going to her house for brunch tomorrow for heuvos rancheros, my favorite breakfast !!! She just moved back into her house after living in Chicago for a couple years. Her renters lease was up and she moved in two weeks ago the week her father passed away and she started a new job for the U in Flint. What a week she had. I look forward to seeing my gal pal. She was my biggest support after the last surgery and she stayed with me for a couple months on and off while Doug had to work. A true friend !!! I wish I could do more to help her. I did bail the water out of her floating garden out at the lake two weeks ago. The boat was about to sink with four planters of squash, tomatoes, greens and herbs. Great idea though !!! We just had so much rain it flooded the boat. That was the last time I went out to the lake. I have only swam 2-3 times this year. Maybe next year will be better and I will be able to enjoy it more. I did kayak about 5 times which was fabulous. I miss the cottage !!! Today it is 65 degrees and I have a shawl on. Good to be inside and rest. So on that note............Good day.

Oh, Douglas is doing well and working, as usual, like crazy on the Old mill project. His foreman got sick so Doug did not plan on working hands on and is a week behind schedule. May have to hire another to push through. He was hoping to spend the weekend at his sisters but now he can't. Very sad about that. his cousin passed last week so he really wants to be with family. I miss them so much too. I feel our nieces and nephews are growing up with out us having the pleasure to watch them grow. Now we have a grand nephew and niece too. Mathew had a son and has a step daughter, both adorable. Maybe holiday time?

Make it a wonderful day !!!!

I know I have been missing in action. That's good !!

2009-08-17T09:31:00.002-04:00

All is good!!! when you see no entries. It means I am too busy to enter any information so no worries. This summer has been quite full !! I have had company on and off all summer with my sister and nieces being here last week for a fabulous visit. Douglas and I enjoyed their stay so very much. We miss our family from down south immensely. It is hard to live so spread out with me being unable to travel with few exceptions. I was amazed at how grown up my girls are and how they have grown into smart,beautiful,talented,engaging and wise girls. It has been two years since they last visited. So this was a treat. They went to the annual Butterfly Walk for lupus research at UM as did cousins Polly and Sarah, my dad's wife Mary and one of his best friends Robby. Thank you all for coming and it was a treat to see you all. I am on the planning committee and have been able to attend last four years with the exception of four years ago when I arrived with a van load of water bottles and was rushed to the hospital in a truly horrendous flare and AVN episode. My bones were dying systemically and I was blacking out with pain. My Dr. told Doug to take me to the emergency room where we spent a few hours then into a room for almost a week. That was the start of a bad run of flares, treatments and surgeries which are almost over. I have the next right hip revision Monday October 19. Then the knees? I am getting around quite well with a few gimps here and there. I have had a minor flare for a few days which is common for lupus patients to get at the end of an active sunny summer. The lupus clinic is busiest now and during the holidays or early January. Proof that sun and stress are to be avoided at all costs. I am co planning a fall lupus education-support program at the university which will help patients find ways to deal with stress and other tools for a best daily life !!! I am very excited about this. It is a dream come true. This is the one element missing form UM and now I am happy to say I have driven my Dr. crazy enough to allow us to do this with the stamp of UM's approval.

It has been wild kingdom in our yard and also at the lake. The animals include: Bunnies nesting in our carrot patch, now gone, two snakes at the lake, a doe and other deer in the back yard, many chipmuncks, little tazmanian squirrels in attic),moles, geese, ground hogs, a ton of birds(including one in the fireplace) and all the other natural life in the woods. We also observed the meteorite shower which was fabulous! So I have had my nature buzz lately. Sadly some nut job killed the two swans that live in the pond down the street.There is a $5,000 reward fire information.

Douglas is working on a project on which I am assisting in a creative capacity from a far. Old clients who wanted a jewelry-accessory store renovated at The Old Mill in Pigeon Forge, Tenn. where we renovated a kitchen-food store. We will also be doing another renovation for their "Potters Shed" and store in January. I am hoping I can be there for the entirety. Winter time is easier for me to head south. Right now the garden is about a month behind and is exploding which keeps me very happily busy. My friend is coming to stay for a night on her way back to NC from visiting family in Holland, Michigan. I may have to load her up with food in exchange for harvesting help. I froze green beans with sister Martha while my niece made pesto and then I made pickled green beans, carrots and cukes which have all been tasty. I like the simple recipes. If anyone has a Kim Chi recipe please send it to me. I love me some kim Chi.

Tomorrow is my Popa's memorial with honor Guard in Holly, Michigan. It has taken a month to get a date and all the paperwork done. I do not think my grandparents thought they would ever pass away and so did not plan until the last minute. I went to my friend father's memorial Saturday. I will be ready for a break from people passing. If you think I have been morbid lately it is just that so many people have died this past two months. Doug's cousin just passed last week at a young age of cancer. Doug was planning a visit this weekend. So sad. So that is why. When someone dies just about every week for a period it makes you ponder the end and very natural part of life. They are in a better place I know.

I hope this finds you all well and happy enjoying the last vestiges of summer. Hugs.........

The garden is kicking into high gear

2009-07-29T17:07:00.003-04:00

If you have been by lately then you know the garden is full of food and flowers. Herbs have continued to do well after a bumpy start. The beetles are out now but not as bad as last year. They sure love been leaves. I am going to take a soil sample next few days. My neighbor has a bacteria in their soil and I want to ensure it is not in ours. So far no symptoms but it is always good to check annually. Same as well water.

If you want to trade some weeding for food let me know. I can always use the help and love to share. The tomatoes and peppers are ten days off or so. Late blooming but a lot of little green tomatoes everywhere and tons of little pepper plants. Those are the cash crops. A little bunny has been living in the lettuce and greens. She is so cute. I try to leave her enough scraps to satisfy her hunger. The moles are active as usual as are the chipmunks. It is always something. A dog is in the future someday soon. I miss Beau and of course Jakey. He was the best dog ever. I really like the Chesapeake Standards we saw a few months ago. Hypoallergenic and do not shed. Katie, our neighbors Rot, protects the yard quite well but I do miss having our own furry friend.
A sweet puppy was out at the lake last couple days visiting our friends. What a sweet girl she was. She hung out with Doug and I. luckily I had some treats. Later.............

I am thinking about my grandma and how hard this transition must be for her after losing "her guy". She seems to go between denial and utter confusion and anger. I think she is worn out from worrying about everything and all the changes have been too fast. New furniture, new functioning phone, fresh paint and lots of people in and out. She said she wanted to crawl in a hole and hide. I think she forgets she is home and can hide upstairs in her room if she wants to grieve and cry but she does not. Her health is not good either but she will not go to the Dr. I fear she is making herself ill. I think, not confirmed yet, The memorial will be August 17th in Holly Michigan, moved back further than I expected due to dad's schedule, paperwork and the memorial park only allows military gun salutes on Tuesdays. I see how challenging this must be for a woman who does not know how to pump gas.........Sad. Still so beautiful and full of grace. Death is hard for those left behind. Once the memorial is over I think she can move on??? Or at least stop worrying and rest.

I am dealing with a cold which Doug has now even worse than mine. So we are a snotty mess, coughing and hacking. I got some herbs (echinacea, goldenseal and cough syrup plus a new netty pot with salts to snort) from the co-op. The other OTC stuff makes us feel funny and only makes it worse. I feel good though in general other than pain. Still waiting for hip surgery date. It really is starting to show damage and popping more. I guess it will be mid October. My surgeon is out of town and his secretary moved to a different position leaving no one to book surgeries. Odd is it not? It will be when it is meant to be. I trust that. I did meet a with a new therapist today who help release pain. Hard to explain but we shall give a shot. Trauma release of sorts. Lord knows my body has been through trauma. It was nice I felt good while we were working together. Mind over matter stuff.

back in the groove............anniversary today

2009-07-27T10:25:00.003-04:00

My dear friend Mary Geitner originally from Asheville has been living with her husband and 3 year old precious daughter near Boulder-Denver area. we had a whole week of just us and it was glorious. We laughed, philosophized and talked about our lives of which we have been far apart by miles for many years now. We ate out of the garden and ate well. spent two nights at the rainy lake with a fire in the wood stove. How sweet in mid July. Yesterday Doug arrived at 5 am. Long night for him. he is resting up for a few days and we plan to spend time at the lake. Good thing it is close.

This last month has flown by with many challenges and heart strings being pulled and some cut. Health keeps rolling with the punches. I found out my nephew and his wife are pregnant. It;s a BOY. my brother Howard is very happy to know his family lineage is carried on through Caleb and Holly.

Garden keeps me busy. Slowly making things for fall-winter prep. Looking at many projects coming up late summer-fall. The walk is August 9th www.amsterlupus.org for more information. My sister and her two lovely girls are coming in August and September kicks off the UM Lupus Education Support Program at the U Hospital. I feel blessed to have this opportunity to co-facilitate and create a template for the new model of support groups. Dream come true.

Tennessee project with Douglas always fun clients. Good late summer project Felling gratitude.
I love my husband and it is our wedding anniversary. Very long time !!!! So happy !!!

Death came as it does.............

2009-07-15T20:27:00.005-04:00

Popa Gross, Joseph Gross, Died on Sunday at 6 pm at home with loving wife Vera and Daughter Marilyn. He was in Hospice care and in no pain for the last hours. Saturday we were with him as he suffered with body shutting down and then morphine and all the end of life savers were available. Thank God for Hospice !!! if you want to make donations you can do to Hospice or www.amsterlupus.org. Grandma has decided to have a private military burial of his ashes in Michigan where they both will rest in peace eventually. No memorials as of now as per his wishes. I guess at 92 there are few friends left and family is so scattered.

I had a tough time Sunday eve and cried in the garden with my man by my side. My Popa taught me how to garden so it seemed approriate to honor him in that space. I realized this week of July will have three major death anniversaries ( 8th my grandma(mom) saul, 10th my birth mom and 12th my grandpa gross) not to mention three other deaths in the family in the past month. What a wacky time. So last few days I have been low energy and emotionally drained but good. Douglas had to fly out Monday am and I have just been alone with my feelings and working a little in garden and on the lupus education program at UM. These things keep me busy in mind and body yet my heart is till weakish.

Michigan summer is here. Hot and muggy today after a chilly morning. Lupus is hanging out a little letting me know I need to rest and avoid sun. I am doing just that.

My wish for us all to have peace and love in our lives..............................................

Popa is close the end.....and Nina's niece died..........

2009-07-11T18:15:00.003-04:00

Sometimes the world does not make sense but there are reasons for everything. My 92 year old grandfather who is in hospice, no meds, no water, no food, no ice chips, body not functioning and in pain is wondering why he is not dead. At the same time one of my Step Moms, Nina, has just had a huge loss. Her niece who was 42 years old( my age) just passed away a few days ago after retiring fro care at homem 23 years in Military service and finding the love of her life? Why? How does this happen?

After we left my grandparents we felt like we wanted to do something to help him go peacefully. Not what you think, but pray for his soul to go in peace and "so be it". I look at my exhausted grandma and aunt who are watching over him 24/7, both with auto immune disorders, and I wish I could do more. Hospice has been great though. They are there when needed. I think what he needs is pain relief and some quiet time with out everyone fussing over him. He used to play the violin in the Detroit Youth Symphony and loves classical music. I wanted to play that instead of the food channel, which was on. But these are choices people make. When My mom's mom died( Donna...I call her mom too) four years ago July 8th, we had her favorite tunes on the CD player in critical care (private room), we lathered her with lavender oil and lotion, rubbed her feet, gently scratched her back(which she loved) and took turns lying in bed with her as she lay in a coma for almost a week, telling her we loved her and all was safe for her to go. She did go after her all the family arrived and a rainbow filled the sky while Amazing grace played on the CD player. It was her favorite bag pipe version.

I have been with so many dying people and have lost so many loved ones I guess I am OK with it all because I know there is peace on the other side for most. It is my prayer tonight that Popa go in peace and in no pain. I also have great hope for my grandmother to live a little longer to enjoy life and do the things she loves. She deserves that after years of care taking, but I fear she may follow close behind and she even says it at times. Both her parents went within days of one another. I am selfish and want her to stay !!!! In Peace..................

So glad Douglas had a chance to be with him. Popa loves Doug like his own and Doug is so good with him. He brings peace to the place. For Popa and me. Douglas was with his own father at the end too so he, as me, understands this process. Tiz a journey which is inevitable. Then a new life is born.......................

This is the annivesrary of my mom's passing

2009-07-10T18:59:00.005-04:00

Yet I feel VERY MUCH at peace with myself NOW, i went through most of my emotional anguish this week and last. There were many death anniversaries and some other recent deaths and major illnesses plus other relationship issues which I rarely have in my life. I felt as if the planet turned upside down starting two weeks ago and ended this morning at 3 am. I had a couple dreams, which if you know me, are epic in proportion, and also cathartic. Now I feel a sense of relief and total peace like normal. There for a couple weeks I was not pleased with my emotional state. I am not easily depressed but then I realized the death anniversaries and many mother issues, which are really in the past, yet surface during this week every flippin year. It is cyclic. Not just for me but my sibs as well........................."Step Sibs"? Being an only child my sibs are still the real deal with different parents. Then it came to me in a dream.........................all is well and as it is to be. Faith and gratitude in "all that is" helps me keep this sense of peace, even in rough waters.

I am new to face book. Do not hang me out to dry yet. It is a whole new obligation and I may not hang in there. I like writing on my blog, journal,letters,cards and in emails.............not to mention I have been writing a book for years. So FB is fun for now but do not be offended if I drop out. It is fun though........I have reconnected with so many people it is amazing. I hope it continues to be those with whom I want to connect. Some weirdos out there................??????? (not you doog) well actually, yes you are a weirdo, but in a good way.

In the meantime I have been thinking about what it means to be a good friend. That is a challenge for anyone much less someone who deals with a chronic, unpredictable and at times life threatening illness. Then add a husband who works odd hours, out of town and mostly for long periods of time, with his own health challenges. It makes life at home more interesting and unpredictable. This means I have to go with the flow on a moment to moment basis which drives most people crazy. I understand why. I have lost a few friends for this reason and I totally understand. What I want to say is "Try to place yourself in others shoes". If you have an illness which can appear at any moment( sometimes invisible to the eye) and never know if you on your butt for an indefinite period of time; would you feel compelled to make commitments and keep them even if it meant you are placing your life in danger? Would you want people to feel uncomfortable in your presence if you are pale, weak and looking like crap sometimes with tubes hanging from you? Do you know how hard it is to say to "NO" when all you want to say is "YES"? Well let me tell you it is not a fun ride but it does offer an opportunity to take care of ones needs while attempting to offer enlightenment at the same time. Jesus spoke of walking in another's shoes and he did not mean Nike Air. This is the real deal people. So for those of you who feel disappointed because I can not make a dinner date, grand opening, shower, wedding, a visit, party or whatever...........please know my intentions are good and "I can be flighty at times". Like it or not. If you want to be in relationship with me you have to deal with it. Douglas and I work very hard at simply maintaining our home-space, business and health. That is all we have to offer at the moment. I will not be offended, equally, if you can not be available to help or support us when we call. We TOTALLY understand. Life s a gift and peace is a choice. I desire to have drama free relationships which nurture each person involved, so if you can do that you are a real friend-family member. Which I treasure. If not then I understand and will miss the connection.

Love and blessings.......................................

snake in my way???no way !! it was transormational

2009-07-08T22:48:00.003-04:00

I have been interested in native american tradition, culture and history for many years thanks to my uncle Max Saul and my grandparents(Gross') and a friends (not a big history geek so don't try to challenge me on it) but I do know snakes in many indigenous cultures represent change or transformation. I am a portion Cherokee and researched a bit about this. I also attended some native ceremonies) which were eye opening. Snakes are a reflection of our need-desire-path ( whether we like it or not) to change or shed the past during certain times of the year. It is like a chicken molting or a butterfly morphing. I have always had a snake live by me, walk by me, under me, over me or with me while I was approaching a challenging time or in the middle of it. You can call it folklore or whatever but it has been a steady in my life and it's "medicine" has served me well. If you have a special pet ( horse, dog, cat etc.) then you know they carry medicinal-healing qualities just like wild animals. I personally want to Cap(ture) a few raccoons in our yard................and some skunks and chipmunks, But for the most part I am all about the animals having their natural lives and somehow wisdom which in many ways affect us. The trick is knowing what they might be saying, metaphorically, in the grand mystical native sense. In my opinion..................The photo to the right shows the black snake we had at our dock (which no snakes have really been present for many many years in cold Michigan)...We had some smallish water snakes.....................but this was a bigger version of the non poisonous version. It made me feel peaceful for some reason. maybe the way it just stood still staring at me while I shoved off shore?

I can clearly say that this past two weeks has been all about family, obligations, disappointments, memories and mother "issues". I am a motherless child considering all the mothers I have had. Steps, Grands and God Mothers included. I seems to have been short handed in a way, yet so blessed all at once. I mourn for my first and second mothers Pam and Donna who both died this week years ago. I also mourn for my grandmother Vera who is now ill and taking care of our Poppa at home with Hospice. I was there today to witness the love she has for him. The mother role she admits was not her gift, Yet to me she was everything a mom should and could be. Her mind drifts and she toils after her love. She always has and worried her love for him took away from the love for her kids. Her life devoted to a man no one understood. I love him so very much. My relationship was different than that of my other relatives. My mom was very close to him too. I guess I am saying that my grandmother may have felt like a bod mother in some ways, but to me, my mom and her husband she was the rock !!!! and still is. She took care of my mom when she was so sick. She has always been there for me and everyone else who has needed her. I fear she will die not knowing this. I fear my Poppa will die not knowing how much he was loved or at least how much by her. Sometimes years cloud good memories. His tears today showed me he did not forget and I will see him in my dreams soon(pain free). The tears I shed.

When I left today I kissed his red, cold, balding head filled with sarcomas and bloody nose from a life prolonging oxygen tank........I watched him struggle to utter even the simple word "yes" for water or soup which seemed painful to swallow. Yet no complaints. Only a loving hug and gesture from Grand-Mom that all is well. When I kissed him good night I told him he could let go and I love him and to promise to visit me in our dreams tonight. He started to cry as did I and we shared a moment which now make me cry. It reminded me of the moment we shared on July 10, 1975 when he told me my mom died. Now we are full circle, and eyes wet with tears I did not hold back, nor would I try, I find myself pondering family and the roles we play, or decide not to play, and to whom or whom with not we share our love. Why is the answer. The answer is only in how we let it affect our lives now. Why we hold back?

In a sense I know lives have been lost......lives will be lost and mothers and fathers are just humans trying the best they can to play the role. I miss my moms and I am foreseeing the loss of a" Grand-father". Tender night..............week......for me. As for the others (you know who you are) who have been going through similar sadness............My heart goes out you all. I know it is not easy saying good buy. Let the snake energy of transforming take to that place of letting go and letting god settle this quandary. sad night..............................

long view of july 4th garden......michigan ? a little slow

2009-07-04T16:50:00.006-04:00

We have been picking peas, savoy, parsley, herbs, lettuce(still), arugula and a carrot. I feel very good about today's bounty. I made a Quinoa salad with peas, tomatoes and herbs in a lemon, herb dressing and some arugula and lettuce for our neighborhood pot luck.

Yesterday Mary V., My step mom, buried her mother, who passed many weeks back Calaifornia. The ashes were buried next to her husband, Julius. My Poppa Gross on the same day was admitted into Hospice Home Care and we will move him to home Monday with all the equipments-bed etc. needed to make it easy in grandma and Aunt Marilyn. My birth mom and my other grandma "Donna mom" both died this same week. Very tender for me as always. I have lost many moms now on this week. I have a very different way of looking at death due to my experience..............yet it always carries with it an Aura which can not be described. I smell my mom and I feel my grand-mom at times and it is inexplicable.

Douglas "finished" a home garden project which has been in the works for while. Looks very good. Reminds me of Johnny Depp or "Pearle" if you are movie buffs. Bonsai and trimming bushes..............We went to the farmer's market and bought a few plants for our front yard plus beets and lamb meat from my favorite farmer gal. We ate fresh Tamales from Pillar's booth. $4.00 for a tamale with slaw and sauce. How fresh is that? Doug got hibiscus tea. Next week our hibiscus plant will be in full blossom so we can make our own. Glad she was full and everyone was so happy to have a cool summer day.

We miss our family, sons and Lauren very much. We miss our friends very much. If you read this and want to connect you can. I am able to handle calls and emails and even visits. I am quite well for now. Please do make contact. It is hard to handle illness but you may have to one day use me and Douglas as an example of a positive way to handle it truthfully. You may also need support? We understand.

Also a month ago my brother in law and sister in law lost their Father who had been suffering for way too long with cancer. Our prayers go out to them and their mom who is now dealing with early dementia. Much love to the King family...................

Freedom comes in small packages..............make sure you see them, open them and enjoy their gifts. Unknown at times. I sure feel blessed by my freedoms. Happy Fourth and freedom Day !!!!!

from lupusnow.org genetics and lupus

2009-07-01T16:34:00.001-04:00

What’s in your family tree? The latest thinking about lupus and genetics
by Jenny Thorn Palter

Bring the new baby home and you’re likely to hear, “He has his uncle’s ears,” or “That expression reminds me of her grandpa!” Later on, there may be other comments: “He has his father’s talent for music” or “Her grandmother loved to read, too.”

What you won’t hear anyone say is, “She’s going to have lupus, just like her mother.” That’s because there is still no way to predict exactly who will develop the disease and when -- or why.

Same Family ...

Christina Gomez, 21, and her younger sister, Adriana, 19, of Ontario, CA, know a little something about genetics. They both have lupus. In the Gomez family, the predisposition for autoimmune disease comes from both parents: Their father’s mother and one brother have severe rheumatoid arthritis, and their mother’s brother and a sister both have type 1 (juvenile) diabetes.

Adriana’s lupus diagnosis occurred in September 2003 when she was 13, after severe pain and swollen joints in her fingers caused the family to seek medical care. The first doctor said Adriana had rheumatoid arthritis and referred them to a pediatric rheumatologist. There was a two-week wait for an appointment, and Adriana says she spent the first week on the living-room couch. “My body hurt so badly I couldn’t move. The following week I saw the rheumatologist, who said it was probably something called lupus.”

... Different Symptoms

The pain also started suddenly for Christina -- in her legs and back, in 2007 when she was 19. “I couldn’t get out of bed. I couldn’t even turn my head, it hurt so much,” she remembers.

Within a week, the pain became so bad that she had to be carried into the emergency room. She couldn’t move at all. Her family suspected lupus all along, and after all the test results came back, she was diagnosed with lupus. That was nearly two years ago.

Even though Adriana had been told that lupus can occur in families, she was surprised that her sister developed lupus. Then when it happened, she expected Christina’s lupus would be pretty much like her own. “We’re sisters, we got diagnosed with the same condition, so you would think it would be the same. But after she had to make several visits to the ER in just a few months, it was obvious that her lupus was much more active.”

When asked how she felt when she learned of Christina’s lupus diagnosis, Adriana says simply, “I felt sad. It hurt to know that someone so close to you, someone you love, would have to go through the pain and suffering you’ve had to put up with.”

Why Lupus -- Why Me?

Humans inherit genetic material in the form of DNA (deoxyribonucleic acid) from their parents. Normally, this information is on 46 chromosomes arranged in pairs -- 23 chromosomes from each parent. A chromosome consists of a single, very long string of DNA called a helix that holds thousands of genes. Current science suggests human chromosomes carry 20,000 to 25,000 genes.

Genes are an important part of what determines physical appearance, behavior, and your susceptibility to diseases. An error or mutation in just one gene, or a change in the basic arrangement of chromosomes, can cause a serious medical condition. But most genetic disorders cannot occur unless both the mother and father pass along the responsible gene or chromosome. We do not yet know the exact causes of lupus, but it appears that genetic, environmental, and hormonal factors are all involved.

Studying twins has proven very helpful in examining the genetic and environmental influences that may cause disease. Identical twins possess the same genes, while non-identical twins, like any other siblings, share on average only half of their genes. Regardless of their genetic background, though, both identical and non-identical twins usually grow up in the same environment and share similar exposures during childhood. Therefore, comparing how frequently lupus affects identical versus non-identical twin pairs can provide valuable information about how the disease is influenced by genetic and environmental factors.

According to Frederick W. Miller, M.D., Ph.D., chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences at the National Institutes of Health, research shows that there is a 10 percent to 25 percent chance that an identical twin will develop lupus if the other one already has it. This drops to a two percent to five percent chance among non-identical twins. Compared with the approximately 0.08 percent frequency of lupus in the general population, this suggests that lupus has an important genetic component. Studies also suggest that the likelihood of developing other autoimmune diseases is higher in families in which a person has lupus.

Miller puts it this way: “There are multiple shared autoimmune disease genes that can get you into the theater of autoimmunity, and then there are other disease-specific genes, and probably certain environmental exposures, that escort you to your particular seat.”

There are few absolutely “good” or “bad” genes or environmental factors, Miller says. “Rather, the environment in which a gene operates defines how useful or harmful that gene will be, just as the genetic background of a person often determines the extent of the effects of environmental exposures.”

A Mother-Daughter Bond

Vivian Scott, 52, who lives in the Seattle suburb of Snohomish, WA, was diagnosed with lupus on April 6, 2000 -- the one-year anniversary of her thyroid cancer diagnosis. “Not a big fan of April 6!” she quips.

But the diagnosis led her to discover that she has a first cousin with lupus. “When I asked my doctor if diseases like lupus tend to occur in families, he told me that some families have a ‘propensity’ for them,” she says.

When Vivian was growing up, she remembers her mom would talk about how she and her twin sister were always considered ‘sickly,’ which was blamed on the fact that they were born prematurely -- a signature event for moms with lupus. “My grandmother would have been around 22 when she had my mother and aunt, and then she died at 26 of a brain tumor -- or so the story goes,” Vivian says.

It wasn’t until a few years ago that she considered this might all mean something else. “I visited a small farmhouse in South Dakota with my mom, where she had lived as a child, and she told me, ‘I remember my mother in this bedroom a lot because she was sick and we didn’t know why.’ That’s when I thought maybe there was more to my grandmother’s passing than the oral history indicated. Unfortunately, my mom was only four when my grandmother passed, so all we have to go on is hearsay.”

Vivian remembers being hospitalized in the third grade -- first, the doctors suspected leukemia, because the blood work was confusing. Then, they said it was rheumatic fever. Finally, they said they didn’t know what was wrong. She remembers fainting in grade school and junior high, which happened to her mother as well.

“My mom remembers me whimpering and crying a lot when I was little,” she adds, “and no one could figure out why. It also took years and years for me to get pregnant. My mom and sisters would joke about how fertile they were -- and then there was me.”

In spite of what she learned from her doctor about lupus running in families, Vivian says she never worried much about it while raising Vanessa, her only child. “I was horrified the day she came to me and said she didn’t feel well and both her arms ached. I just knew.”

Lessons Learned

When Vanessa was diagnosed with lupus in December 2002, she was a 17-year-old high school senior. Although she can’t recall a particular triggering event, she remembers being worried about taking the SATs and deciding where to go to college.

“In the summer of 2002, between my junior and senior year, my mom, one of her sisters, and I took a family road trip through South Dakota. I was so tired and felt weak, but none of us had any idea what was wrong, so we kept stopping at hospitals and health clinics along the way. The doctors thought I had mononucleosis, but the results were negative, so they didn’t know either. That was kind of the beginning of it; it wasn’t until probably November that we thought to ask about lupus.”

Vanessa was fortunate not to miss too much school during her final months in high school—but she had some inside help. “The nursing staff at school felt really bad for me, so they’d let me take little naps throughout the day,” she says. “Also, I told all my teachers, so if I was having an extremely off day, they’d let me go home early or come late. I just pushed through, and then I would go to bed as soon as I got home from school.”

This same determination now is helping her cope with the demands of her studies at Seattle University School of Law, where she is in the top 8 percent of her class. “I’ve wanted to be a lawyer since I was 10 years old,” she says. “I’ve always believed that if I can do this, I can be successful in anything.”

As for lupus possibly appearing in a fourth generation, Vanessa says she went through a phase of not wanting children, but now knows that she does. “I don’t know the odds of my children developing lupus if my mother and I have it, and I definitely would talk to my rheumatologist about that. It’s a hard thing to balance: deciding to not have a child in case it develops lupus, or deciding to have a child because if it did develop lupus, I would know what to expect and how to deal with it.”

The Possibility of Gene Therapies

So, while lupus is not hereditary in the traditional sense -- it is not the result of a single-gene mutation or a particular chromosomal error -- genetics researchers have uncovered information that may one day lead to innovative therapies.

One of the most exciting is the discovery that two gene mutations in the complement family -- C2 and C4 -- are linked to the development of lupus. The complement system is a group of proteins that work with the immune system and play a role in the development of inflammation. It is estimated that C2 deficiency occurs in one out of 10,000 people, nearly one-third of whom will develop lupus, and it is the most common single-gene deficiency seen in people with lupus.

Another area of study is the interferon pathway. Interferon is a protein produced in response to a viral infection. It acts to suppress viral growth. Increased interferon activity has been shown to be a heritable trait in families with a history of lupus.

Michelle Petri, M.D., M.P.H., director of the Hopkins Lupus Clinic at Johns Hopkins University in Baltimore, sees many women with lupus who are planning pregnancies or already raising children. She talks to them about the possibility of lupus or other autoimmune conditions in current or future family members. When she fields questions about genetic testing for lupus, she tries to be realistic but also hopeful.

Freakin Blimpy Burgers........A2 to Asheville Freakin prevails

2009-07-01T15:15:00.005-04:00

OK I admit it has been many many years since I ate at Blimpy and do not even remember doing so. I see it on campus and I know it is an Ann Arbor(UM) institution, especially for students and musicians, and now that it has appeared on the food channel with Guy's "Diners, Drive Ins and Dives" it has gained a wider national crowd. My husband and I went today after we went to the farmers market and ran errands. We waited in line on a Wednesday afternoon for 15 minutes and I got yelled at for sitting my tired hips on a seat when all are supposed to stand until food is in hand cafeteria style. I ordered properly while my sweet Doogie just looked dazed and confused, understandably so. You have to know the routine on how to order. I luckily was privy to this information enough to know when to order what and how to order. The sitting part threw me for a loop but I was not going to argue with the dude making my burger. Once we got our fried veggies(tempura style-which were light and yummy not mushy) and freshly ground burgers, made to order, we sat outside watching people and chatting it up about the Freakin Brand, Freakin Pure Water, Freakin Beer, Freakin Universe and the Freakin brand. Douglas is a Freakin smart guy with big plans. We have been working with this through our corporation called Freakin Inc. for years................It started as a free social web site in Asheville. There were other partners and now it is really just Douglas with me as a sounding board supporter. I am not geek oriented or computer savvy like he is so there. Marketing is my thing and I am willing to help as long as i know what we are marketing. Now I am clear on his vision in this moment.

Creating a brand(which we have), marketing it, selling or leasing the trademark and making it all fit into one package is the challenge; one which we are up for. It would allow him to work from home being creative online as he enjoys and still be able to do his designs and artwork while growing our food, raising meat, working on our home and living a clean and old fashioned lifestyle we desire. It was a good conversation and a light bulb moment for me.

We need to find a water bottling company to sell the brand(label applied, supplied by us, to a reusable bottle or jug and it will sell itself via word of mouth a wen site we will provide. Then placing the Freakin Beer label on a local brewery's bottle-jugs is easy and is a shoe-in for towns like Asheville(freak Capital) and A2). Then they sell to distributors, restaurants and venues where we have connections and festivals etc. We get a percentage or a lic. fee and they make profit. When we can show revenue to back up our existing trademark we can sell to a larger "company". The revenues helps us create the Freakin network via Freakin Universe and local Freakin social-community sites (similar to community boards, face book, twitter, my space, blogs etc) city specific or even state, university and country specific. The end result is we donate a percentage back into community organizations which promote innovation, art, health, science, goodness, education, community organic gardening, volunteer ism, philanthropy etc..............That is the end result and redeeming factor in all these years of trying to figure out how to market the Freakin Trademark, network and brand. If Blimpy can do it with no redeeming quality than so can Freakin Universe. Imagine a social network online and otherwise making good things happen in their communities and it not being strictly about making money, although that is what we desire. Capitalism still works for us as long as we give a little back. I can support lupus research, aid for those in need, make gardens for elderly and poor, Douglas can donate artwork to hospitals and public spaces for those who may not afford artwork, help organizations which assist fathers and sons in deepening their relationship, work at the children's hospital and cancer center as he likes etc.. Teach young people skills, build ramps, lifts and devices for handicapped individuals with out costing tax payers. Schools can grow food organically and teach kids about healthy life styles, exercise, fresh air intake, diet, nutrition, respect for themselves, others, the land and how to be self sustainable. Medical costs go down, people connect with each other and the earth while digging in the dirt or pounding nails. We see a world where folks donate time and supplies while a whole network of Freakin Good Deeds procreates. Can you dig it?

Lupus Foundation of America

2009-07-01T15:09:00.002-04:00

http://www.lupus.org

Lupus now magazine is a great resource which can be delivered to your home or online. The cost is $25.00 annually and helps raise awareness and funds for lupus patients-research-education and support. The site is filled with helpful information. The foundation has been around since 1975 and has a new administration which I feel will move it forward into an even greater positive and fresh future.

Read the featured article on the lupus now web site on genetics and it's role in lupus. There is no doubt with my family history that genetics play a huge role. You decide.

do not forget the annual Butterfly Walk in Detroit area is August 9th at Woodhaven Community Center. www.amsterlupus.org for further info and printable registration forms or donation forms.

S.L.E. Lupus Foundation

2009-07-01T15:02:00.000-04:00

S.L.E. Lupus Foundation - Leading the Fight Against Lupus

challenges and courage to face them

2009-06-30T15:00:00.003-04:00

It was brought to my attention by a dear friend that at times it is challenging for her to know how to be a friend to me due to my own challenges with lupus-bones. I totally understand this. I have had friends and family with whom my own lack of understanding or perhaps issues kept me from deepening my relationship or even sustaining it. I have let some drop to the way side because I found their weight too heavy for me to help carry. I know one thing for sure I do not want anyone to be my friend or supporting family member unless they completely want and can do. I know the difficulties of not knowing what to say after a friend has had her breast removed or another a pace maker placed near age 50. I also know how hard it is for me to see my grandparents aging and struggling with the denial which goes along with the end stages of life. My Popa Gross is close to the end but he and my grandma can not let go. So they keep us at a distance and we gratefully accept it because we are helpless to do anything.

I think this is based on fear. Our own fear keeps us from facing illness and death because we all know we will end up there one day. Death is inevitable and so are physical challenges and aging. To avoid this is to walk in denial and dig a whole in the sand. I do it and you do it. We all do. When I volunteered for hospice my first "client" was an 8 year old girl who's mom just died. I was 8 when my mom died. I could not stay with it for too long. It was too close to home and at age 23 I was ill equipped to handle it fully. I ran until later I went back and faced this fear head on. I now know death to be something we should not fear. Pain and suffering is a different story. I am speaking of immortality. This is what we each desire to avoid.

In my own life I can honestly say this is no longer an issue. I have been with people while they go through the dying way too many times and have been present after they have died. I have spent most of my life around sick people, myself included as I faced my own death several times, yet I see myself as a vibrant being. I do not see myself as sick. Once perhaps, but not now. I am a warrior like every other person who survives with an illness or disability. We are the ones who can leap tall buildings and jump mountains.

I encourage you to reach out to an elderly person, sick person, a child who is surviving cancer or someone who finds themselves homeless. There will be more like this in your future and if you face it now you will be that much more prepared for this future. Carpe' Diem.............................Be like the duck who let's the water drip off it's back and continues to move forward. Grace is a gift and also can be something one works hard for. Pray,meditate,be silent and it will come if you really want it in your heart and soul. The spirit can handle anything.

Feeling blessed and know it !!!

2009-06-27T16:36:00.003-04:00

Sometimes I feel so blessed that I can not contain myself. I also have down times but not so often. I think when one faces death, loss and disability (and rises above) there is a miracle at hand which deserves attention and acknowledgment. To be alive, loved, full bellied, able to move about, living in own home and enjoying the freedoms we enjoy.................is a grand thing. I wanted to say "I am a lucky human". Then add the good loving of a good man and you have a very happy woman. I do not want to ever be remiss in stating this loud and clear !!!! I guess I was blessed to be born into my family and situation no matter how challenging life has been(mom dyeing,divorce,eating beans and rice for months etc). I have always known I was loved. No matter what; I always knew how blessed I was and felt gratitude for everything(except for a few teenage moments). Now is a good time to remember this. Especially those of us who live in the US. We really do not know or can conceive of the lives others face in countries not so free or rich. Remember this when you complain about the traffic, bad weather, noisy neighbors, snappy check out lady or whatever small issues we turn into tragedies. It could always be worse.

Keeping it in perspective.................Angela

Update...........

2009-06-26T11:16:00.002-04:00

Well summer has hit us big time. Yankees are not used to the intense heat and humidity we have experienced this past week. Brown outs in Detroit area make it hard on the sick and elderly. Luckily we only had a few minor power outages due to a storm yesterday. The storm was amazing. I love watching and smelling them roll in as long as it remains safe. The gardens needed it too.

Douglas finished a small "flower" garden along the front walk way which will be so nice once it grows in. Prairie grass will get 4-6 feet tall and I love the way it looks. Foxglove, lavender and delphinium. Less grass to maintain. Next planting is moving a bunch of blue spruce from a patch in the back, all clumped together, to the front as a road barrier. It is our intention they will survive. The last owners planted a bunch of seedling for later transplanting and they have gotten too big. We will have a Christmas tree from it too!!! So our property is coming along slowly. Doug gets a lot done for only being home a few months out of the year. I just do my veggies, herbs and flowers. Peas are coming in and lettuce is on its way out. The squash and beans are starting to flourish and should have more food in two weeks. I am enjoying it all and desire to share so come out and pick !!!!.

Last night we took advantage of another summer music concert on campus at the Power center. It was one heck of a show by Sharon Jones and the Dap Kings. An R and B, soul band. She reminded us of a female James Brown. It was too much fun. Usually the U concerts are tame and civilized (a little too much). This was not your typical show. People were dancing and they had audience participation. It was a powerful and happy show. We left feeling really happy and full of energy. There are more events ongoing on campus through the weekend. Then in July we have art fare. I usually can not handle it due to the sun and walking, but if I get the ramp in place for my power chair I will go with my umbrella. It is a very high end art show and I love seeing all the streets closed and restaurants spread out in the streets. It is one big family friendly party.

My nieces and sister are coming to visit in August and are attending our annual Butterfly Walk supporting lupus research at UM: "The Friends of Amster Lupus Fund" started by two friends who have been affected by lupus who decided to raise awareness and funds for a cure. I have not had a huge family-friend turnout at the walk due to circumstances which are unavoidable. This year it will feel great to have my southern peeps. Don't get me wrong Dad, Doug, Mary and one year My god father Morris and three of my dad's oldest friends, like uncles to me, all came and I was very happy and appreciated their support immensely. It always feels good to have back up for something as important as this. My friend Kitty made buttons and magnets for the event and has created a web site for lupus wearables etc. She is always so good to her friends and community. So this year I am happy to have family here, especially my girls. I never place expectations on people for my own interests.....and......I wish I could be there for my loved ones more because we all have our own "things" going on in life. I do the best I can to support loved ones as we all do. On that note..........do something nice for someone today. Maybe take your elderly neighbors something you grew or baked, volunteer, take your old magazines to a retirement center or simply smile at a stranger. Small things count !!!

recap on last nights concert

2009-06-21T14:47:00.002-04:00

Oh My Goodness !!! We had the most enjoyable evening. The opening "band" was "Sneakin Out" from Flint originally. They were a three member band with base, mandolin and a wacky percussionists who looked like Bruno with a Mohawk and wore a red fluffy skirt. Actually he was more sumo wrestler type. He played an old type writer like a piano. Funny and very smart and talented individuals. Then Pink Martini. I have to correct my last entry: There were twelve of them from all over and they are now living and based out Portland Oregon. They have a fourth CD coming out soon with them playing with the Portland Symphony. It should be good. The audience was mostly older folks which was interesting. I think it was a full house. Hill Auditorium is an acoustic heaven for musicians and listeners. We really enjoyed ourselves. We never go out at night. I am usually too tired or ready for horizontal mode early. Plus there is the budget we are on which only includes a little stipend for entertainment. We are quite good at creating our own entertainment. So all in all it was a good concert. I saw a few people who I know but did not scream " Hi!!". Pink Martini played songs from all over the world in the language it was written. The singer had to know Portuguese, Turkish, Spanish, Italian, French, Croatian, English and made up language. It was very fun and imaginative. they would be better heard in an outdoor park or a jazz club with a dance floor.

After a morning in the garden we have more winter squash planted another round of Detroit Red Beets. Douglas is working on the front flower-prairie grass bed. He is doing it really nice. It is summer now and feeling the heat. The garden needs to dry out a bit and de-bug. We have had more bugs which are new to us this year. All organic.

In one hour Dad and Mary will be here for Fathers Day. I am making dinner and we will do a garden walk.

For my other father Lawson................I love and miss you. I know you are in good hands and surrounded by your spawn. Wish we were there. You are a lucky and blessed man.

Butterfly Walk Coming Soon

2009-06-20T13:26:00.003-04:00

August 9th will be here before we know it. http://www.amsterlupus.org/. Please mark your calendars and try to make it. it is always fun and rewarding. Bring a hat and sunscreen and for some umbrellas. Two years ago it sprinkled a little. I just came home from the committee meeting and all your envelopes are stamped and ready to be sent. Thar's a personal invitation !!!! It was great seeing old faces I only see a couple times a year. Sweet women who work hard for the cause to raise awareness and funds for Lupus. Hat's off to ya !! Also go the new "Lupus Store" featuring a butterfly design by my dear friend kitty. http://www.cafepress.com/lupusstore

So it is a lovely day after two nights of intense thunder storms and heavy winds. Lots of flooding in the area and my garden is swamped. Too bad. It will have a few days to dry out. We really have enjoyed eating right out of the garden. We are spoiled. It has been slow this year though. The past few years we had much more produce by now but the late frosts and heavy rains have kept things from growing. I also lost seeds during the frost. Douglas is creating a lovely flower-herb and prairie grass bed along the front walk way. It will be so pretty and functional. The road traffic, while not heavy, can be loud. This should offer a little buffer and privacy so we can sit on the front porch peacefully. I love how in the old days, maybe some people still do, people sat on their front porch in the evenings when it was cooling down and talked to one another. My grandmother fed the squirrels out of her hand. This was the old fashioned neighborhood watch program.....You know what I mean. My grandparents knew every one's business and watched over us kids while we were playing. Do kids still play outside? TVs, computers, computer games and cell phones seem to be more enticing to our youth than walking through the woods, building forts, playing street hockey and all the things we did back in the day. We always had lemonade stands and bake sales. That was our ice cream truck money. I can still hear the musical sound of Harold's ice cream truck, like carousel music. We could hear him blocks away and went running for the change jar or my grandpa would empty the change from his pockets and buy us all ice cream. He was a hit with the kids for sure.

Tonight we are going to see Pink Martini playing at Hill Auditorium on campus.They are amazing. I have never seen them in person but I hear they put on quite a show. They are from all over the world but based out of Paris I think. Orchestral music with a Latin flare and dramatic yet humorous. This is one of the perks of living in a college town. There are always concerts and events happening especially in the summer. I have not been able to take advantage of most events due to my health and legs. This is a treat for sure. Check them out online if you like fun music.

OK this is where the topic turns to poop. Seriously. Yes stool. Not the raccoon poop either because we now seem to be raccoon free. They must have seen Doug's big trap and decided to split. Good !!!! I am talking about that lovely test where you have to collect specimens for the lab to make sure all the plumbing is working(so to speak). I started giggly wondering if the UPS guy will know what he is picking up to deliver? Can you imagine? I am twisted I know but really. Who ever thought of such a test? I don't mind doing urine samples but the other is slightly disturbing. Funny though. It is a thorough way to see how one is digesting and if there are any bacteria, parasites,cancers or viruses which need addressing with out swallowing a camera. They can see if there is blood or other issues as well. The up side is that this test is only needed every ten years or so. That's not a lab I would care to work for. OK I will stop. For those of you who know mine and Doug's humor you are smiling because there is an inside joke I will save for later.
But you should get one of these tests after the age of 40 and especially if you have a chronic or inflammatory disease. It's really easy. Do it for those you love. Then you can tell them you have your sh-- together. Hahahahaha..............................The end.

back on earth

2009-06-17T21:19:00.005-04:00

Douglas is home after a long period away from home "Thank God". His project in NC was very successful and stunning. A multi-plex movie theater and bar-food area with mixed media and event space turned great. The opening was wonderful with people from the past and present in Asheville who have supported Madaras Design and Douglas. It was heart warming. The client and his crew flew in from all over and were wonderful. Heritage construction did an amazing job as usual. Our friends Casey and Mary (Heritage) are the best people and talented beyond the normal GC company. Their personal touch goes a long way. Their guest house and hospitality was outstanding. We love being with them. Our friend Constance as always provided us and especially Douglas with so much support and home cooking. She rocks as usual sweet C. I miss our friends for sure !!! Our Asheville crew is incredibly talented and dedicated and still are working on finishing the project which will have a long finish. Mucho Gracias !!! There are still two more theaters within the grand multiplex which need renovating. So we shall see. Hats off to everyone !! The architects from Texas equally amazing !! and client Bill and his wife Susan gracious and devoted to this vision of a multi use theater/preforming arts center and in providing an artistic space for film and other performance while utilizing local talent. I applaud their vision. Check out "Magnolia Films". All you art film junkies know the name. This is who created the vision and made it happen. If you live in Asheville support Carolina Theaters on Hendersonville Rd. South Hwy 25. It is worth the visit as an art space and as an entertainment space. Plus local brews and wine. Artists are welcomed to present their work for future shows in the mezzanine. Contact me for info. Also have your events and film club meetings there. Beer and wine with Ashveille Pizza and local breweries!!! More to come for sure. I can direct you of you wish.

I am so happy with our garden and flower beds. The rain and colder temps have stumped some plants but others are thriving. We have been fed well, especially by French radishes: mmmm. The lake is up by a foot from last year and it is quite perfect !! We spent the past week between the lake and home. Doug's finally feeling rested after 19 hour work days 7 days a week. He is not used to doing that labor intensive work for such long hours away from home so he is happy to be in his space and resting while working on many future projects and finishing the current one. I also have a "Honey Do" list out of control. He will be on the road for a while but I will attempt to join him when possible in between surgeries and taking care of the home from afar. It is a lot, and I love it, but I would love it more if he could be home full time, which we are currently trying to establish.

Next Monday and Tuesday mornings we are going to our neighbors farm to let out all their animals(chickens, turkeys and goats) for their day in their outdoor spaces. We just let them out and feed-water and get a feel for what it is like to raise animals. They have a much larger property devoted to farming than we would. They have the best eggs I have ever had and we are trading for eggs-"gold"!!! So that will be fun. Sunday Dadio is coming over for father's day dinner with Mary. Eggplant Parmesan was his request as I make it baked with no cheese(vegan). It is good !!! Plus a nice mixed veggie-green salad from the garden and fresh baked bread. I may even do some grilled veggies???? or appeteezers.

We may also attempt to visit my Popa Gross who today turned 93? What a strong Prussian. He is amazing. He was so close to death the last year and now he is having a re-awakening. Still bed bound but he is eating a little and the home nurse-pt team is taking good care of he and my grandma. They just have to be home bound and it demands a lot of energy. My aunt lives with them and handles the errands etc. I hope we can visit but they may be too pooped. Douglas' father passed away in the late 80's. He was a fun and gregarious man whom our mom loved very much. The whole family misses Bob at this time. "Here's to you Popa Bob!"

So I just wanted to give an update. August 9th is our annual Butterfly walk in Woodhaven close to the airport. I hope you can join us or donate for the cure for lupus. It is a wonderful program and we are doing great things at UM for lupus patients in the present and paving a brighter future for those to come. We are survivors of the highest order !!!! http://www.lupusadvocacy.org/ and http://www.amsetrlupus.org/. Bring lots of friends it is a great day and you get a pancake breakfast.

Lots of love
Angela

My future is bright I have to wear shades....in the garden

2009-05-30T19:49:00.003-04:00

I am enjoying the sun filled skies more so than ever as I seem to be less affected by it. There were times in my life when driving in a car during the summer for an hour would cause a horrible rash, fever, nausea, head ache, arthritis, swelling, pain and lupus flare. I am now more tolerant and do protect myself with new fabrics that blocks sun and better sunblocks. This truly offers more freedom during the summer months.

I remember a trip to Costa Rica when all my friends at the beach hut were spending days in the water and on the beach. I was covered up under the banana trees and thick bush with 45 proof sunblock, tunics or caftans and umbrellas. I was so jealous because I wanted to be out sea kayaking during the day and walking, riding horses on the beach etc. I was able to do all these things before 8 am and after 8 pm. So that was my schedule. It worked and I was blessed. I kayaked with the dolphins and sat in the beach 100 feet from the whales. I watched the howler monkeys jump through the trees and wildlife do it's thing: scorpions, bats, snakes, birds, bugs, turtles, frogs and all sorts of other creatures. This was my second time and shortest visit, all of two weeks. The first time I was mostly in the rain forest by the beach or in the jungle. Some time I spent in San Jose which is wonderful if you can find your way and know where to go. My boyfriend at the time was partially raised there and his father and step brother and sister lived there with his step mom running family businesses. It was a great experience. I was not a tourist but a "Tica". The second time a tourist. Both equally wonderful. I have a dear friend who fell in love with CR and moved there years ago to create a retreat/bed and breakfast/inn. She has done well. She also is very involved in helping endangered animals, spaying and neutering dogs and cats and helping stop youth prostitution mostly among teenage girls with rich businessmen from US and Europe. She is one of my "heroes".

Today the farmers market was hopping. People in a flurry to buy plants NOW. Next two weeks we will see less plants more fresh food, and then the food will come in by the truck loads. I did buy a few plants to add to garden and also fresh locally raised free range lamb. Every year it gets more full and crazy. Local coffee roaster was there "Rooster Roast"...fabulous. Also the tamale Gal "Pillar". Zingermans with their fabulous cheeses which I can not eat......and the bakers.
So all in all it was a good morning. I got home and the guys were here cutting the grass and trimming and I planted and watered a bit in dry areas. Then proceeded to clean up five more piles of raccoon poop under my bedroom window. STINKY. Fake snakes, cayenne pepper, light sensors, me yelling, Lysol, orange cleaner, Tabasco and everything else I have read to attempt at keeping them away with yet no luck. I am at wits end.

My Dad's dad is coming home from a month at the hospital after my step mom's beautiful mother died. He (Popa) is ready to go but he keeps hanging in there. I have tried calling Hospice to see what they can do. My poor grandma can not handle him nor can my aunt who lives with them. Dad does most of the paper work and technical stuff. He is trying to get a hospital bed and a good chair for Popa's room which is very small where all he will be easy to navigate. It makes me wonder why the human body or spirit keeps leaning towards life when life is so difficult at age 90 something. His dad and brother were the same way. I have strong fighter German(Prussian) stock on that side with enough Polish,French, Canadian, English and a tad Cherokee to balance it all out. Add Doug's Hungarian and you have some mix. what mutts of immigrants we all are.

Enjoy your summer days of planting and reaping the bounty.