Saturday, April 2, 2011

Swollen Hands a Difficult Post Dost Write...

...and very little art doth make. :-(

Having rheumatoid arthritis can be more than an inconvenience. It can be downright crippling, especially when you depend on your hands to write and paint. Although I do take medicine for it (methatrexate and prednisone), some days are worse than others. Unfortunately, it seems like this is one of those times. The side-effects from the meds can often be worse than the actual pain itself. Saturday afternoons are my "methatrexate coma days". I'm usually out for the count for several hours after I take it. It puts a dent in my weekends, but it's the only time I can take it. I need to be fully cognizant during the week, with three kids.

This past month marks 5 years that I've been living with RA. I was diagnosed not long after my older daughter Christina was born in 2005. My elbow froze up on me while I was driving my son to school. At first, the doctors thought it was tennis elbow. Then it was 'De Quervin's Syndrome', a nerve thing that affects people who use their hands, like typists and mothers. The treatments weren't effective, so the osteoarthritis people sent me to the rheumatologist.

And that was when they finally gave me the correct diagnosis: rheumatoid arthritis, with secondary fibromyalgia. And medicines. A lot of medicines that made me sick to my stomach.

A couple of years ago, I visited the rheumatologist's officer every 6-8 weeks for an infusion session. Their infusion room was actually comfortable, with leather recliners, pillows and blankets. My sessions lasted 2 hours and I was one of the last patients to leave. Honestly, it was a break in my hectic routine. Nine times out of ten, it was naptime. The nurses were awesome and helped me not be so nervous about needles.

Upside: my RA improved while I was having the treatments. Downsides: they weren't cheap, and insurance put it in the 'experimental medical treatment' class and therefore (according to them), they weren't required to pick up any of the cost. The Remicade suppressed my immune system to a point where it wasn't attacking my own joints. But it also meant my resistance to other infections was almost nonexistent.

In May 2008, I was hospitalized for bronchitis that had progressed to pneumonia. I don't remember most of that ordeal, but it was really bad. I ended up in the ICU (with a blood pressure that had crashed...all the way down to 80/60, I was told). Complicating things was the fact I found out I was pregnant with my third child...despite the fact the doctors told me that wasn't possible being on methatrexate at the time.

Um...yeah. Oops. But I had Sarah, and she's a joy, so at least some good came out of the bad.

I still struggle with it, especially when the weather's loopy like this. It affects everything from my energy level to my ability to type and paint, and my general emotional mood. I do get "it's only arthritis" from it's 'only a minor condition'. I've also heard, "Are you sure it's only in your head?" See my lab tests and tell me THAT again.

One more time: it's a CHRONIC and PAINFUL condition. It's a part of my life that I have to manage in order to function day to day. And there are times when I feel like I can't do that, but three children force you to do as best as you can. You don't have the option of wallowing in self-pity. You can't just curl up in bed and cry, though you want to. You have to live.

I have to write. I have to paint. It's just me. And RA can try to destroy that, but I won't let it.

All original writing and art copyright A. Dameron 2000-2011

1 comment:

  1. FWIW, on recommendation of my RA dr, I have always taken my mtx at night so I sleep through the worst of the immediate effects.

    For all the rest, I hear you.


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