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.