Letter about Funding at the NIH

Today I did some letter writing advocacy for the Arthritis Foundation.  Below is my letter to:

• Senator Barbara Boxer (D-CA)
• Senator Dianne Feinstein (D-CA)
• Representative Nancy Pelosi (D-CA 8th)

 Please Continue Arthritis Research at the NIH

I'm your constituent and I dream of a future free from arthritis pain. Please fund the National Institutes of Health in Fiscal Year 2012 at $35 billion, the minimum needed to sustain the current level of research and account for inflation. 

Public investment in biomedical research holds the real promise of improving the lives of millions of Americans with arthritis - an unacceptable disease that costs our nation $128 billion annually.

Every morning I wake up and dread putting my feet on the floor.  I know the pain that I am going to feel, the burning and the searing.  But I have to get up and walk.  Then come the hands - the stiffness in my hands.  Making my hands work the way I want them to; the way I need them to in order to do the simplest tasks: holding the toothbrush to brush my teeth, holding the brush to brush my hair, clasping the faucet to turn on the shower, and holding the shampoo.  These are all actions I used to take for granted; I don't anymore.  Each task can cause pain or can mean my hand doesn't work and I drop the brush, the shampoo bottle.  Then I have to bend my stiff body to pick it up.  Arthritis isn't just one pain or one stiff muscle or joint, it feels like Pinocchio trying to walk every morning.

Arthritis limits the activities of 21 million Americans and I am just one of them.  So please support arthritis research and continue the ground-breaking Juvenile Arthritis initiative by funding the National Institutes of Health at $35 billion in FY 2012. That is the minimum needed to sustain the current level of research and account for inflation.

Biomedical research holds the real promise of improving the lives of millions of Americans with arthritis. An investment in research is an investment in our nation’s future. It is an investment in MY FUTURE!

Sincerely,

Adrienne

If you are interested in writing a letter to get more funding for a disease that affects me and 21 million of my closest friends, please use the link below to send a letter.  There is a letter already written so you can send that or add whatever you want to that letter.

Send a Letter

Diagnosis

This morning I woke up and I swear my fingers felt like Tootsie Rolls.  It was weird because they were not swollen as you would expect.  They were more like swollen on the inside like what a sausage must feel like when it is being stuffed.  I take so many anti-inflammatory drugs that I don't really swell that much anymore.

I guess at this point it might be interesting to hear what is going on with me.  I have rheumatoid arthritis but it doesn't stop there.  I have what my doctors call "Adrienne's Disease" because I have so many different parts of different diseases that it is hard to pinpoint exactly what I have.  As well as rheumatoid arthritis, I have symptoms of lupus, chronic fatigue syndrome and Sjogren's syndrome.  I also have Raynaud's phenomenon, restless legs syndrome, pernicious anemia, and Crohns disease.  These are all autoimmune diseases.  Autoimmune diseases occur from an overactive immune response of the body against substances and tissues normally present in the body.  In other words my body is attacking itself.  There is a war happening in my body every day.

To stop the war (or at least slow it down), I take a bunch of medications called anti-inflammatory drugs.  It is a race to keep the disease at bay for as long as possible. 

But most days I don't look sick, even if I wake up and my fingers that feel like tootsie rolls and my feet feel like they are on fire, you would not be able to tell.  Some days I don't feel very well and don't have the energy to do more than what is absolutely necessary to get through the day.  Luckily those days do not occur very often.

My best drug is to find the humor in  all of this.  Laughter is the best medicine as they say.  Who wants fingers that look like Tootsie Rolls?  Fingers that taste like Tootsie Rolls?  Now you're talking.

Can't Remember Sh*t!

Earlier today I thought of the funniest story to write.  Now I can't remember what I was going to write. So I guess this is what I should write about!  My disease: CRS.  It is called Can't Remember Shit!  I know everyone has it in some way.  Remembering where your keys are or where you parked your car in the parking lot at the airport.  Do you spell "receive" is it "ie" or "ei"?

Well, I have a been taking this medication called Topomax that has crazy side effects such as memory loss, difficulty with concentration or attention and language or speech problems.  Some other side effects are: hair loss, hemorrhoids and hot flashes!  How fun!  So far I have not noticed any of the three side effects.  Back to the memory loss, I have such a hard time sometimes remembering even the most simple things, things people take for granted.  I will swear and argue that I have not seen a movie only to find out later by looking at my Netflix list that I have seen the movie.  I have no recollection of ever seeing the movie.  I can no longer remember most of my childhood unless I am having a really good memory day.  I have a hard time with words; not just remembering how to spell them but remembering the actual word.  Luckily I live with a person who has a memory like a trap!  She is really good in filling in the gaps for me.

Maybe tomorrow I will remember what I was going to write about today!  We can only hope...

Attended an Arthritis Lecture Today

Today I went to the Library to hear an arthritis lecture.  Most of the information I knew already but there were some interesting statistics that were new to me. 

• 50 million people in the US have a doctor's diagnosis of arthritis; 5.5 million of them are in California.
• Arthritis is the # 1 cause of physical disability in the US.  
• Women are 3 times more than men to get arthritis; 2/3 of those cases are under the age of 65.  
• Arthritis costs $128 billion each year in medical costs and lost wages.

I am deciding how I want to get further involved.  I am not the "let's start a support group" kind of person.  I am not in any shape to do any physical stuff.  I am not interested in being on a committee, standing all day at a fair or working with kids at a camp.   I think I am more of the speaker or ambassador type of person.  I want to advocate for my disease.  I want to talk and lobby for arthritis.  I know I am good at it.  I have no fear talking to my representatives. 

I guess this is a good time to tell my story about going to the Arthritis Walk about 10 years ago.  I have raised money for the Breast Cancer Walks for many years.  I always have such a good time at those walks.  I almost always go by myself and always find someone to talk to and walk with.  Well, I went to the Arthritis Walk by myself and it was a horrible experience.  I got there early and walked around.  There was no where to sit down and no one spoke to me.  I tried to talk to folks but most of the folks were there in groups and the staff were very cold.  So I did the walk and got in my car and went home.  Oh, first I got in my car and called Brenda and cried.  It was so disappointing.  The directions said no dogs but so many folks had dogs, I wish I had brought Happi!  At least then I would have had someone to walk with!

I need to rest my ankle/foot since I have a long walk tomorrow at the Giants/Marlins game.  I think the Giants will be very tired since the game is still going at 11pm in the 12th inning and the game tomorrow is at 1pm.  Wish me luck with my long walk to my seats!

Was it a Happy Mother's Day?

Today was Mother's Day and it was a clear, sunny day. I am a mother to two small dogs.  I would have loved to take them out for a nice walk at Sunday Streets in San Francisco.  But today was not the best day.  It was one of those days where I can't manage to get off the couch for the first half of the day.  Then I suddenly woke up while watching a show I was waiting to see.  Of course I missed the first half of it and now I will never know why the guy was arrested.  Did he really murder the woman?  It will be a mystery to me.  Then I took a nice long bath and went to watch The King's Speech and fell asleep again.  What a day!  But if you have RA, you know these are the days that happen.  They aren't fun but seem to be necessary to rejuvenate for the coming week.  Happy Mother's Day to all you mothers.