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title: "On Rheumatoid Arthritis and the Things Most People Don't Know About It"
layout: post
image: 
    feature: header_health.png
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I have suffered from rheumatoid arthritis (RA) for almost twenty years now, which is almost half my life. If I had known back at the start of my diagnosis what I know now, I do not know for sure that things would be very different, but there was a heck of a lot I did not know. How complex is this disease and the things it does? This complex:

<a href="/images/health.png"><img src="/images/health.png" alt="My health"/></a>

"Rheumatoid arthritis" sounds like the sort of disease that old people get that isn't very serious. Auntie Doreen's hands hurting a bit. This really couldn't be further from the truth.

When my rheumatoid arthritis is not treated, I cannot walk, I cannot get up, and the pain levels in my neck and shoulders makes me throw up, just sitting still. Please nobody suggest a diet for this -- I've tried them all and none of them work. There is no describing how awful I feel when the RA isn't treated. I have just lain in a hospital bed, sobbing before, dosed up to my eyeballs in morphine. There is no choice but to treat this.

But the treatments for RA are nasty. They are all immunosuppressive drugs. This has led to a number of consequences for me. The first was that I can contract pneumonia ultra-easily. This, in turn, has led to me coughing so hard that I dissected my carotid arteries and had a stroke. This, in turn, led to hearing and vision problems. Also, due to being seriously immunosuppressed, Covid has wrecked our lives. It is incredibly hard safely to go anywhere or do anything.

Then the immunosuppression allowed a virus called BK virus to destroy my kidneys. So I now require dialysis 5 days per week. How did I get from having "arthritis" to 8% kidney function? Who would ever have put those two together? What about all the severe bowel consequences that I have had, as a result of the RA attacking my gut?

People think, when they hear "arthritis", of a condition that only affects the joints. It is true that my arthritis _does_ affect my joints -- severely -- but it also causes so many terrible knock-on effects that you would not anticipate. The thing that strikes me, though, is that there was never any choice at any point in this treatment and I did not ever think "there was no way I should have done that". I simply had to take what was available at the time, then deal with the consequences later. And almost every single one of the health problems in that graph above comes from rheumatoid arthritis.