Friday, March 11, 2011

2011 Butterfly Walk Registration Page

First Approved Drug For Lupus in 50 Years!! Benlysta


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.

Monday, August 23, 2010

2010 UM amster Lupus Butterfly Walk Photos-link

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...............

Thursday, April 8, 2010

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

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.

Monday, March 8, 2010

Long term outcomes of children born to SLE patients study HUM00007966

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.

Sunday, February 21, 2010

Update on health front

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

Friday, January 29, 2010

Monday, January 25, 2010

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

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.

Saturday, January 16, 2010

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

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

Lupus awareness blog

http://lupusresearchnews.blogspot.com/

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

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

"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

Friday, January 15, 2010

Keep making good choices !!

"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"

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:

Thursday, January 14, 2010

if you feel sorry for yourself watch this inspirational story

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!!!

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.

Wednesday, January 13, 2010

From Lupus Alliance: Support group

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

Tuesday, January 12, 2010

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

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.

Thursday, January 7, 2010

health reform and thought provoking ideas

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

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

Friday, January 1, 2010

Flare, cold and lucky Lakshmi for an abundant new year


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.

Sunday, December 13, 2009

A new Day and a New Blog

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

Saturday, December 12, 2009

Riana commenting to my question

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

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

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

Friday, December 11, 2009

Bone chillin

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.

Wednesday, December 9, 2009

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

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 !!!!

Tuesday, December 8, 2009

"Gag me with a toothbrush"

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

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.

Sunday, December 6, 2009

Good Duck Recipe with stuffing

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

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

Saturday, December 5, 2009

Last Supper

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

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.

Friday, December 4, 2009

Chicken foot soup from Riana Lagarde

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/

Wednesday, December 2, 2009

nothing like new bone growth to change one's attitude

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.

Monday, November 30, 2009

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

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.

Sunday, November 29, 2009

Laziness November 29th

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"

Wednesday, November 25, 2009

"Disability My Ass"

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

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

Gratefulness and lupus and Thanksgiving

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

Tuesday, November 24, 2009

thankfulness

"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 !!!!

Monday, November 23, 2009

"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.