Arthritis Links & Information
I've resisted putting up this page because old "Arthur" has stayed in the background of my online life, and a part of me wants to keep it that way. On the other hand, though, some of the most important information and support has come to me from friends I met online. This page is my way of giving something back.
I have two forms of arthritis, osteoarthritis and fibromyalgia. I first had symptoms over twenty years ago when I was still in my teens, but because these are commonly known as diseases of "old people" it was only recently that I was diagnosed. For years no one believed there was anything wrong because I didn't "look sick." I worked through it as best I could for years. It wasn't until I had to quit my job in January of 1999 that I was taken seriously. In time, I began to doubt myself and wonder if I was crazy, or just weak compared to everyone else. This is one of the hurdles that nearly everyone with arthritis and especially fibromyalgia faces. Understand that your pain and fatigue are REAL, even if those who are fortunate not to have these conditions don't realize.
There isn't much I can tell you about the process of applying for disability benefits except that it is slow and discouraging. I think intentionally so, to be sure that only those who really can't work stick with the application process to the end. I first applied in the spring of '99, and I'm still in the appeals process. My recommendation to anyone starting down this road is to find a lawyer who specializes in disability cases, and follow his or her advice. It's still going to be a long drawn-out process. Someone who knows what they are doing can really help you avoid a lot of mistakes and wrong turns.
Update: 10/16/2000 There has been some progress, I finally have my hearing with the administrative law judge on November 22nd. After more than a year and a half, there's a light at the end of the tunnel. Right now I'm really on an emotional roller-coaster. One moment I'm sure this nightmare is finally going to be over. The next moment all my self-doubts reappear and I'm convinced I'll be denied, and the whole process will go right back to the beginning. I'm trying just to take each day as it comes but as we all know some days that's harder than others.
Final Result: The administrative law judge approved my claim. As a result, I now have a small income from SSDI and, most importantly, Medicare coverage which has enabled me to get much better medical care than before, when I had no health insurance at all. I really have to give all the credit to my attorney, Carol, and her assistant, Sue. I never would have got through this without their guidance.
I haven't updated this page for a long while, in fact the entire web site is in dire need of a complete overhaul. I had another series of flares and was diagnosed with a third form of arthritis, polymyalgia rheumatica. As the name suggests this is one of the inflammatory forms of the disease. The accepted treatment is prednisone, which I had to quit taking because it was having an adverse effect on my blood sugar. My rheumatologist then suggested that I attempt methotrexate, which seemed to be effective for a short while but then stopped working. Now we are simply treating the symptoms and hoping for a new treatment to come down the pipeline. I have high hopes that something effective will be on the market sooner rather than later, because such great strides are being made every day in the treatment of arthritis. Even given the diagnosis of this third form of the disease, I would still have to say that my quality of life is better, due to much more effective pain control and the range of motion exercises and relaxation techniques which I learned in fibro class. I still write and do crafts, and this year my husband put several large containers on my front porch so that I can garden again. Life goes in spite of disability. I have learned to accept what I cannot change, but I make sure I absolutely cannot change it or work around it somehow before I accept it!
This is just a little update to let you know I'm still hanging in there. I've been over some hills and through some valleys. My father passed away and now my nearest relatives now are some elderly uncles and an aunt who live a couple of towns up the river. My world gradually closed in until I became pretty much confined to my house, with only my husband and our cats for company.
Social security paid for a motorized wheelchair for me, but it broke down, and they don't make any provisions to repair it. Having had that freedom to come and go as I wanted for a few months, I hit rock bottom emotionally when it was taken away. I decided I had to do something to pull myself out of it, and doing something for someone else seemed like the best possible start. I would be allowed to work a few hours a week, but I am just not reliable enough to hold down a paying job, because I can be fine one day and stuck in bed the next. Organizations which have volunteer workers tend to be more flexible when people have good days and bad days. I've been very upset about the political situation in my state and my country for a long while, so I began doing a small amount of volunteer work for the Democratic party. After the election, I decided that I wanted to continue to volunteer. I now go to Sierra's Haven one morning a week and help out where I can.
I would advise anyone in my situation to look into volunteer work if you can. I usually sleep the rest of the day when I get home, and if I overdo it I pay for it in a big way the next day. The rewards, though, are well worth it. I've made some dear friends, had a few adventures along the way, and I have the satisfaction of having done my bit to make a difference. That helps a lot to make the pain manageable.
I am only able to do this because we have a public transportation system called Access Scioto County. Hopefully, when the weather gets warm I will be able to get my chair fixed, which will give me even more freedom to get around, since the bus will take me and my chair shopping or wherever I want to go in the county. People who have never been handicapped may not understand how much it means to be able to go grocery shopping whenever I want, or go to the doctor without pestering someone else to take me.
What is Arthritis?
There are over 170 different diseases that share the name "arthritis." They can strike anyone of any age group from the newborn to the elderly. Osteoarthritis is the most prevalent type. It's also known as "wear and tear" arthritis and "common" arthritis. No matter what the OTC pain reliever commercials would have you believe, it isn't MINOR PAIN if you're the one who has it! Fibromyalgia is more properly known as Fibromyalgia Syndrome (or FMS for short.) Dictionary.com defines a syndrome as "a group of symptoms that collectively indicate or characterize a disease, a psychological disorder, or another abnormal condition." The symptoms of fibromyalgia include muscle pain, fatigue, a cognitive disorder known as "fibrofog" which results in confusion and forgetfulness, irritable bowel, and sleep disorders. Some confusion arises because these symptoms are really quite general and often get misdiagnosed as something else. If FMS happens to co-exist with something causing similar symptoms like a thyroid problem, the symptoms of either one can mask the other. Other forms of arthritis are similar to rheumatoid arthritis. They are known as autoimmune diseases because the body's own immune system turns on itself and begins to attack and destroy the joints -- as well as other areas of the body such as the eyes, or the heart or lungs. Lupus is in this category as well. Autoimmune diseases often strike teenagers and young adults, crippling them in the prime of life, and can sometimes even become life-threatening if not treated properly and promptly.
If you have arthritic symptoms, the best thing you can do is see a rheumatologist and find out exactly which type of arthritis you have. The earlier proper treatment is started, the better the results tend to be. Your family doctor can refer you to a rheumatologist in your area. You may find an arthritis support group to be helpful. Your doctor or the Arthritis Foundation can help you find one in your area. There are also support newsgroups, mailing lists and chat groups online.
A Word About Quack Remedies
Because arthritis commonly goes through cycles of flares and remissions, it is a very common target for snake oil salespeople. If someone uses a quack remedy and then goes into a spontaneous remission, the quack product can get the credit even though it is actually ineffective. You can spend a lot of money on something that is worthless. More importantly, you may delay necessary treatment while you are waiting for some useless concoction to do something. Not all alternative remedies are snake oil, but unless you educate yourself very carefully, it may be hard to tell the difference. Ask your rheumatologist and carefully research any new treatment before you try it.
For Further information