In October 2006 my new doctor told me I had rheumatoid arthritis. I had experienced frequent pains in my hands and my feet in the months before and my lung-specialist referred me to a rheumatologist. I have since said good-bye to the lung-specialist, not my lungs but my stomach has caused the ongoing cough which made me visit him. I have not yet said good-bye to the rheumatologist and I most likely will not for a long time.
Hearing I have rheumatoid arthritis did come as a bit of shock, even if I knew I had something (the frequent pains and morning stiffness certainly didn’t fit my age (fyi: 27)). We started treatment straight away and I now take 15mg of methotrexate weekly. Methotrexate started out as a treatment for cancer (and falls under ‘chemo’) and works well against auto-immune diseases such as rheumatoid arthritis. Though different people have different experiences, by default, doctors start with methotrexate to stop the disease in its tracks and prevent (further) damage. It has worked but the effect seems to have started to wear off. Nothing to panic about, I have more doctors appointments next week.
I read up a little about rheumatoid arthritis and found that currently, doctors want to treat it as soon as possible because they want to prevent damage to the joints, which apparently can and does occur in the first two years of the disease. I also found out that rheumatoid arthritis does not only affect the joints, it can also cause complications in the eyes and mouth and several other parts of the human body. Due to its nature, it also cause general problems such as fatigue, concentration problems, forgetfulness, sleeping problems, change of appetite. The side-effects of the medications for the disease can also cause and/or worsen these problems.
Of course I found a few sites with stories of people with rheumatoid arthritis and most of them I honestly found very depressing. I strongly believe that your mindset with a chronic illness/condition can help you a lot. It can also sabotage you should you have lost hope and consider your condition a ‘delayed death-sentence’. Some days you feel bad, some days you feel good. I believe the focus should lie on the good days.
Yes, I have cried and felt really bad. Yes, I have had terrible pain one of which made me end up in the ER at Christmas. Later we discovered it had nothing to do with the rheumatoid arthritis, and it could have happened to anyone. The frustration the pain and the limited movability brings has brought me to tears and in a very sad mood. And I refuse to let it become more than that. I will not let it go beyond ‘a very sad mood’. I will not stay home and soak in my own tears and not work and feel bad. I get out of bed every morning, sometimes it just takes very long.
In the end, the result counts. The ‘how’ only counts if I found a really cool and creative way to do a seemingly easy task. Anything I used to do, I can still do. It May take longer, but I can still do. And that, I’ll never give up.
As for the title of this post: if in a year or two or twenty, my legs got damaged, and I started to limp, if my eyes got affected and I can’t really see, if my hair falls out from the medication, I’ll buy a bandana, and wear an eye-patch. I’ll limp through live either with or without a wooden leg. I’ll buy a parrot, and go sail the warm seas.
I’ll become a pirate.