Random thoughts

I don't know what's going on inside my head. I keep having such random thoughts, like a television changing channels. It gets so overwhelming. I can't concentrate on one thought. I can't read anything without my mind wandering off to who knows where...

I know that I am in some kind of funk. I pretty much closed myself off in the bedroom most of the weekend. Partly due to the pain coming back and partly from feeling worthless and depressed. I hate getting dressed to go anywhere. It seems like such a chore. Most of my clothes don't fit me anymore. I don't want anyone to see me.

One minute I'm excited about something, the next I'm so fucking depressed, I think about not being here... I sit and try to define who I am, and I can't do it. Why am I here? I'm of no help to anyone anymore. I have no talents to share with anyone. I'm just an average person with a disability. That's it.

One minute I'm thinking of maybe finding a career that I could actually do, then the RA pain comes back and I realize how foolish I am to think I could work a full time job. The Remicade is not working. I had about 2 good weeks. Now the pain is coming back. The severe pain again. I am so lost and confused. My head is so full of random thoughts, ideas, gloom, hope, happiness, despair... I try to sleep to escape the pain and the thoughts and anxiety inside my head. I can't control my thoughts anymore and it's driving me crazy.

I visualize scenarios of my life in my head. Then things don't go at all like I'd hoped and I'm disappointed. I rehash things from my past and it causes anxiety and panic attacks. I need to pull myself together...

Me

Today I was awakened by my furry companions. Each day they wake me wanting to run in the yard, then to come in for their breakfast and treats. After this I shuffled off to the bathroom to complete my morning routine. I looked in the mirror. I truly looked at myself and did not recognize the image looking back at me. When did I start looking like this?

I see the fine lines around my eyes. The deeper lines around the mouth. I smile and more lines... My skin appears dull, lifeless, I notice age spots. The gray hair, there seems to be more and more of them. Time, stress, and a hard life has caught up with me. Inside I do not feel much older than I did at 20. Why is age so cruel to women? Men are attractive as they age. Women are criticized, and go through so much to remain ageless.

Physically my body does feel old. RA does that to you. I can't do the things I used to enjoy. I can no longer ride a bike, play basketball, garden, or be spontaneous. On a whim I would totally rearrange all the furniture in a room. Moving couches, chairs, entire entertainment centers, all on my own, because I wanted a new look to the room. I used to enjoy walking my dogs around the neighborhood. I remember hiking, and camping doing fun things outdoors. How life has changed.

Things have changed emotionally and intellectually for me also. I feel wiser than I did when I was 20. When a person is young you tend to feel invincible. You take more risks, not worry as much. Now I worry about my future, paying bills, finding my place in the world. I still enjoy having fun, silly fun. Juvenile humor still makes me laugh as well as witty intelligent humor. When I was young I wanted to just have fun. Go out with friends. Now I tend to be a homebody. I have a yearning for knowledge now also.

The change in the mirror reflects the changes in my life.

Trying

Well it’s been a while since I’ve been on Remicade. I’ve been doing a lot of thinking lately about my life and trying to make positive decisions.

After a couple of bad patches with Remicade, I have actually been feeling pretty good the last couple of weeks. So (knock on wood), I think maybe the Remicade is starting to work. I still have some pain in my hands and if I overdo it, I feel bad later. But, thank goodness, the intense pain that brought me to tears has not been giving me trouble. Yayyyy!

So I have decided to go back to school. It’s just a certificate program at the local community college. Hoping to get a secretarial/administrative assistant kind of job. One that will be easier and less stressful on my body.

I’ve also decided to go back part-time to my waitressing job while I am in school. This is mostly so that I can keep my health insurance, and have some extra money. I just got a bill for my last Remicade treatment and I only owe $43.00 this time. Whew! A lot better that the $400.00 bill from the time before. I guess I’ve reached my out-of-pocket limit and the cost will not be much for the rest of the year. So I am going to go ahead with Remicade treatments. I took myself off the methotrexate, and I feel better without it. I’m still hoping I can get Medicaid. I did some research online and from what I’ve read, Remicade is one drug that is covered under Medicaid and Medicare.

Things are slowly looking up. I am hoping that by this time next year I’ll have a better job and be able to take care of myself. Trying to stay positive here!!

Could it be?

Well here goes...

After my bad episode last month with my RA I've been questioning my diagnosis. Last month, a few days after my Remicade treatment I had a really bad episode. I was feeling bad that night and the next morning I had a fever, aches and pains all over my body, a swollen and painful knee, pains in my neck, abdominal pain, and a rash on my face, neck and chest. I was able to get an appointment at my rheumatologist's office that morning. My WBC count was double the acceptable range, I had a fever, and was just plain miserable. The doctor thought I had some kind of infection. I ended up getting a steroid shot, a pain shot and prescriptions for antibiotics and darvocet. I also got an ultrasound to rule out any gallbladder problems.

My fever went down the next day. I still had bad joint pain several days later and another fever spike. I went back to my rheumatologist one week later. When I saw her I was still not well. My other knee was swollen and hurting, my wrist was swollen, red and painful too. I also had a red rash on my arms and chest. No fever though. I stayed and got an infusion of Solumedrol. My doctor seemed baffled about all of this. She said she looked over all of my test results to see what could have caused this. I asked if I could have Fibromyalgia or Lupus... She basically told me no and blew that off. Anyway I started feeling better a couple of days later.

That was about 2 1/2 weeks ago. Since then I have had one more Remicade treatment. Yesterday I started to have joint pain in my hands and in my neck again. Some shoulder pain also. I have been looking online for some kind of answer. Tonight I came across a site about diseases that mimic Rheumatoid Arthritis. There were several other possibilities including other autoimmune diseases, lyme disease, etc. Then I read about Adult Onset Still's Disease. It listed all of the symptoms I had gone through. The fever, chills, flu-like aches, high WBC count, abdominal pain, and the rash. I actually couldn't believe it. Then I found a site with testimonies of people that have been diagnosed with Still's disease. Many of them were like reading my own story. Still's disease is usually diagnosed in children, but there is adult onset Still's disease. The only thing is that it is rare... It is very much like Rheumatoid Arthritis but with some differences. It would explain why I felt better after getting the Solumedrol.

I'm probably sounding like a nutcase! Aggghhhhh! I guess I just want to know what the hell has been going on with me. I hate to seem like hypochondriac, but I know when my body doesn't feel right.

Enough for now. I need some shut-eye. I hope I can sleep...