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Rheumatoid arthritis, the invisible disease

If I were to throw my coin in the fountain and then make a wish, I would request a rheumatoid arthritis cure. But then maybe not. A wasted wish. There is no cure. Nor is there one likely in the foreseeable future. For about a third of those with RA, the biologics offer great relief at least for a time. For about ten percent of us there is no relief and disease is progressing at a scary clip.

Then there is the rest.

RA is a progressive disease. Its progress is unique to each of us.

Slower or faster.

It is still progressive.

Faster for those who have no relief from the non-biologic DMARDs but cannot afford the biologics. Faster for those who have no relief from the biologics. Faster for those undiagnosed and untreated. Slower for those lucky to respond well to the biologics.

I am near the ten-year anniversary of my RA diagnosis.  

My onset was sudden and severe. I was an easy case to diagnose. My RA has been incredibly difficult to manage over these years. Complicating matters were the three cancers I had during those years. The surgeries. The radiation. The chemo.

First my feet developed neuropathy.

The joints in my feet have been chronically swollen affecting the nerves. I had trouble feeling the pedals in my Mini Cooper. I stopped driving. I have trouble walking which is called “walking disability”, a common phenomenon for those with RA.  I use a cane and a walker for longer distances.

My hands are classic.

The knuckles in both hands are the worst. I used to type the keyboard. Now I can only use my pointers. I’m lucky with that as for a while I only had the use of my right pointer. The strangest thing was my hands feeling like they were disoriented. I broke glasses and knocked things on the floor. I have gotten used to my strange, mangled hands.

Then there are my shoulders.

The disability there makes dressing painful as well as making sleeping difficult. X-rays show severe damage in both joints. All four. Each shoulder has two joints.

Then there is my spine. Damaged from the cervical all along the way down to the sacrum.

This is a lot of my progression. I mention all this as a warning for you to get the best medical care you can. Even with the best care you may still progress fast, but then you may not.

I decided what my wish should be. I tossed my coin in the fountain and wished that rheumatoid arthritis was not considered the “invisible disease.” RA is a devastating, disabling disease. Yet to look at a person with RA they may look perfectly normal. During my first years with RA, I wished I could wear my arm in a sling so I would be given at least some consideration. Not to be.

Pain and poor function are part of it. The other part is the profound feeling of fatigue. This immobilizing symptom is caused by the release of inflammatory cytokines into the blood stream of those with RA.

Many family members do not understand when the person with RA requests help with her children or are unable to contribute to the family holiday get together.

Many people to not realize that rheumatoid arthritis is a disabling systemic autoimmune disease. It is much more than a “touch of arthritis.” It is a complex disease that kills by eventually causing heart failure. A person may look well until they don’t.

Those with RA have a higher rate of depression. Maybe it’s because doctors are all but calling them drug addicts because they need strong pain medication and then at home their families are calling them lazy because they ask for help to get by. RA sufferers fail to get needed relief both in the medical community and at home.

I am fortunate to have a kind and considerate family. Many people do. My wish is for those who struggle with lack of pain relief while stretching beyond their ability to manage the demands in their daily lives. Living with a disability is tough. Coping with pain every day is hard. It is especially so during the holidays when routines are disrupted and demands increased.

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