Arthritis Insight-Member Stories-Valerie W.

Home Community Member Stories Valerie W.

Valerie W.'s Story

Update 6/3/01

Hi everyone! This is an up date of my story. I got out of the study and went on straight Remicade. ( I got so bad that I needed help with everything...you know what I mean.) Anyway, I could not believe the difference! I got the first infusion a week and a half ago and I feel great!!! I still get tired easy, but it took the swelling down, especially in my knee. Now I don't have to have surgery right away. The ankle is still a problem, but not as bad. Thanks for all the hints for sleeping. Heat and Ultram have done the trick. The Remicade has greatly reduced the pain in my arms and shoulders. Thank God! I actually played some piano!

I really don't know what to expect, but I pray that the Doc. was right about putting me into remission right a way. I guess that time will tell huh. I go tomorrow for my second dose. I thought that I was supposed to wait the full two weeks, but my doc. moved me closer to my own town. (I was driving 1 1/2hours per visit). The New Doc. seems o.k..I guess that he knows what he is doing. That is all there is for now. Thanks again for caring. Val

May 20, 2001

I just turned 40 April 22. I am married and have one son who is 12 years old.
20 years ago I was in a very serious car accident. I broke and dislocated both hips, (The right hip was surgically relocated), I tore all of the posterior cruciate ligaments in the left knee, I broke and dislocated the entire left ankle, and I am now an above knee amputee on the right side.

After this accident, they told me that I would never walk, nor play sports, or even have children. Since then I walk, play wheelchair sports, white water raft, & snow ski.

I taught aerobics for 10 years to people with physical disabilities (including RA). And I taught swimming. I also gave birth naturally to my son. I also have my own sewing company, mostly all outdoor wear for adults, children, and people with physical problems, and I enjoy playing piano. (I also make Rice Bags all shapes and sizes!!!)

Anyhow, last May I began having pain in my hands and left foot. I knew that I already had Osteoarthritis in my foot, ankle, knee and hips. (I always knew that I would end up in a wheelchair some day, and that was o.k. with me because God gave me 20 years of walking that I was never supposed to have. Sooo...) So I didn't think much at first. I saw my orthopedic and he prescribed Vioxx and it sorta helped. But as time went on it got worse, but there was not much swelling. Finally they sent me to a Rheumatoligist. He ran some tests and told me that my RA factor was no different then 25%of the population walking around with out symptoms. Sooo...stay on the vioxx, but I could try Placquinal (SP) IF I WANTED.

Well, I have never been one to take anything stronger then aspirin, and I asked this guy to prove to me beyond a shadow of a doubt that I have RA...Then if he could, then I'll take it. Needless to say, we got in a word fight and he became belligerent and condescending and I went for a second opinion. I contacted the Arthritis Foundation and a friend who works for them recommended Dr. Fiecthner. So I saw him in January. At first glance (without his own blood tests yet) he thought that I had Fibromyalgia, and severe Tendonitis of the hands. So Off for more blood tests and a hand surgeon. I did indeed have a trigger finger, a ganglion and a synovial cyst on my left wrist. Well the trigger finger triggered in February after skiing one night. so there was my first surgery not related to my car accident.

Then things really started going down hill around Easter. I had to have an MRI on my left knee and it was full of Arthritis and a torn meniscus. They drew alot of fluid off my knee and scheduled a surgery for June 6th. By now I was mega swollen and in lots of pain. It was everything I could do to get my leg on! I could not use my crutches, and it was hard to push my chair. I was also scheduled to have the cyst removed May 1st. So I went to see the Rheumatoligist April 28th and they took more blood and got results back within two days and the RA factor raised from 86 in January to 230 in April!!! They started me on Metheltrexate and put me in a double blind study for Remicade. I could get the full dose, 1/2 dose or placebo.
I had my first infusion last week I am pretty sure that I got some Remicade because the swelling (not the pain) has gone down and I can almost make a full fist.

I go through many crying fits, some with my husband, some without. He and my son have been great. Fortunately, I have not lost my sense of humor. And I don't hate God. I just can't get over the fact that I am so weak.

I know enough about maintaining ROM and I swim 2-3 times a week 1/2 mile in about 1/2 an hour. I do not swim when I am stiffer then normal. Thank God I know how to listen to my body. I have contacted the Artritis foundation about becoming certified to teach.

I really hate this disease!!! It is bad enough being physically disabled to begin with. As I said, I always knew the lower half would go...and that was o.k.. But...Its not fair to take my hands too!!! Enough is enough. Sleep would really help. Right now the RA is in both hands, wrists, shoulders, clavicle, and elbows. I tried Flexerol but that loosened the wrong muscles and my left hip felt like it would dislocate!!! Not fun!!! Do you know what I could take to help me sleep? Please help me. I am just so tired of being in pain, and I don't want to burden my friends and family more then what is necessary.

The worst part is beside the knee going, I have just been informed that I should have an open surgery on my left ankle to remove all the bone spurs and to clean out the RA. We are going to try and wait 3 weeks, becuase then we will know for sure if I am getting the Remicade or not. If Iam not, they will take me out of the study and put me on the full dose Remicade. We just need time for the medications to kick in. Then I can schedule for surgery. Ya hoo!!! (Not).

So there is my story. What fun huh? I am sure that I am not alone, and I am glad that you have this web site for support! Once I get straight financally, I will help out. Thanks for listening.

Sincerely, Valerie W.

P.s. Please ignore my poor spelling/grammer