Bee's Hive

Tuesday, June 7, 2011

Explaining Rheumatoid Arthritis

I've never tried to explain the disease because it's so different for everyone who has it. I've had people say, "oh I have that too", but having swollen hand joints is not RA. I'm going to try and explain it because recently many people have questioned me on what I have and why I can't just get it fixed.

They don't know what causes it and have no cure for it. They do have a ton of medicines to treat it because you can take one medicine for a time and one day it just stops working. RA does not only attack the bodies joints, it attacks the heart, eyes, lungs, kidney's and in many people it causes emotional problems, sometimes brought on by the disease and sometimes the medicines.

When the medicines fail they put you on Prednisone to get you back on track. This is an awful medicine but one that is a must for RA patients. Prednisone makes you shakey, you can't sleep, you are hungry all the time and it changes your personality. It hides the disease for a short time giving the doctors time to decide what to try next. Some people are on a maintenance dose of 5mg all the time. I have other diseases so I can only use it when there is nothing else working but it's usually at a high dose of 30 to 40 mg and I only take it for a short time. It makes me crazy, angry, miserable and I can't focus on anything. Trying to put a meal together becomes impossible because I can't remember from one minute to the next what I am doing.

I am on an injectable that up until six weeks ago, I injected once a week at a cost of $1500.00 a month. One morning I woke up an couldn't move, sit up, bend my legs or turn my neck. The pain, on a scale of 10, was 10. My RA doctor increased the injectable to twice a week at double the cost. It was a real fight to get the insurance company to pay their share. For the past month I've been pretty good again until last week. I didn't bother to call the doctor. He's in Pittsburgh and I'm here in Texas. I have an appointment with him on July 20th and at this point the meds need to be changed to another product. This is always hard because of my other disease's and the insurance company always gives me a hard time.

For now I'm living with both ankles, feet and wrists wrapped in elastic wraps, taking pain medicine, mostly laying in bed. I'm trying to endure the pain and not take the dreaded Prednisone. I don't want to be around me when I take it and I hate putting my son through it.

Even my RA doctor has asked me what the pain feels like. It's hard to discribe. When I move my arm it feels like the joint is exploding. I have the constant feeling of having the flu, chills, fever and full body ache's. My son has wrapped me up in every blanket in the house to try and stop the shakes but I'm not really cold, it's coming from somewhere inside. RA has damaged my kidney's, liver and recently my eyes. When I fall asleep in this kind of pain, I'm always surprised I'm still alive when I wake up.

Because I have liver damage and liver disease, I know my liver is dying. Doctor's today don't let you forget. If I complain about all the foods that make me sick, the doctor will remind me that it's from the bad liver and remind me that the liver cleans everything that goes into the body..and mine is no longer working. I don't know when it will kill me. I could dye from natural causes but just knowing I'm living on borrowed time is something I have to face everyday. Yep, there are days when I just have a good old fashioned crying towel party with myself. It never lasts long. I am glad to have today and I try not to worry about tomorrow.

I hope this helps to clear up Arithritis in the hands and the killer disease RA. When you have RA your life has been shortened by 5 to 7 years.


tisme said...

I think you did right in explaining this disease Bea. I have tried to understand it since you told me you had it, but now, I know what kind of hell you are going through. (well not really, but do understand more)
I pray the doctors in July find something that will help ease your pain.
Hugs Tammy

Darlene's Quilts and Stuff said...

Sorry about your problems and pain and I hope they can find something to ease it.

elsie123 said...

I wish you could have found a doctor here that could work with you. To have to fly to Pennsylvania is just so hard on you. I know we have to have insurance, but it's a shame it's such a controlling factor in your health.

I think of you often Bea. Take care.

Sherry said...

My BF from 3rd grade was diagnosed with RA in her 20s. Hers is coupled with psoriasis...psoratic arthritis?...I've seen that mentioned on television in a drug ad by a major sports figure whose name escapes me at the moment...

She's had both wrists replaced and so many other problems. She was working until her company sold out and she was let go over two years ago. I can't help but think that her RA is one of the factors contributing to her "hire-a-bility." It's very obvious when you see her hands.