…specifically, rheumatoid arthritis. I realize I’m going out on a limb here–wow, hating a degenerative illness. But, yep, I do…
Eighteen months ago, school had just started and I was looking forward to getting control of my time, possibly starting to work freelance (more). But, by the start of week two of the school year, I found myself coming home from the morning walk too exhausted to see straight. I hatehatehate to take naps (I find that they always just make me feel worse) so I try to avoid them at all costs. But this day, when I realized that it wasn’t just creative exaggeration–I really couldn’t keep my eyes open–I headed to bed, setting the alarm for an hour.
I would rouse enough with the sound of the alarm to hit the “sleep” button, extending the alarm for ten minutes. Sometime after 1pm, I actually managed to reset the alarm for 3pm, and went back to sleep. At 3:20, after hitting “sleep” for the second time, I heard the Guy heading out the front door, clearly on his way to get the kids from school. At least I assumed so–I was too tired to get up, to even find out. I comforted myself with the thought that, if he wasn’t, eventually the kids would get bored waiting for me and would head home on their own.
I spent the week like that…I would get up, make dinner, stumble around after cleaning up the kitchen, try to stay conscious long enough to see the kids off to bed, then head to my own. I was exhausted, my brain was on slow and felt like it was two inches to the left of my body; I felt like someone had taken a baseball bat to me in the night.
By the end of the week I was able to make that afternoon walk to the school–by leaving at 3:00 to allow myself enough time to shuffle slowly there. I greeted one of the other playground moms with a casual, “hey, stranger!” and she assumed that I was referring to the fact that she had been away sick all week. We compared symptoms and they’d been the same. Except for the fact that neither of us had had a high temp, we were assuming that it was flu and were both surprised that it was having such an early start.
A week later, I ‘fessed up to the same friend that not only did I still feel battered, but my joints felt as if they were swollen and hot. “On fire” was the expression I used. She looked at me in shock and said, “You have to get to a doctor.” I tried reassuring her that it was clearly post-flu recovery (which can take up to six weeks) but I knew that the fire in my joints was not a normal symptom.
Which is why when I headed off to the doctor the next week, in mid-October, I was not surprised by her instant diagnosis. “You must have rheumatoid arthritis!” I’d gone the google-route, typed in “hot, swollen joints” and “flu” and page after page after page of hits all answered, “rheumatoid arthritis”. Every list I read of symptoms was a complete description of what I was going through. I even found articles about flu-like illnesses being a trigger for some cases. So, I was completely prepared.
I was even somewhat relieved. I don’t like the unknown, I don’t like things hanging over my head, worrying about them, waiting, waiting, waiting–I always prefer the answer even if it’s a Big Bad. Answers give you information, knowledge, a place to go, a place to start to look for solutions–the unknown gives you nothing but fear and grief (yes, I have issues!).
My doctor suggested that there was a chance that it was just reactive arthritis (rheumatoid arthritis-like symptoms triggered by the body trying to fight an inflammatory illness and going slightly overboard) and that it could be temporary–up to six months. She prescribed 1800 mg of ibuprofen a day, and asked me to come back in a week.
A week later, I returned announcing that I’d had to start taking acetimenophen in order to counter all the headaches I’d been getting while taking the ibuprofen. Yes, that sounds strange and counter-intutitive, but that’s what happened and I didn’t really like it. The ibuprofen had helped a bit, but not enough to be really interesting. The doctor said that all my bloodwork had come back negative for all the various tests she’d asked for (to make sure it wasn’t lupus, certain inflammatory illnesses, etc) and prescribed meloxicam, an anti-inflammatory generally one of the first things prescribed for RA.
Luckily for me, my doctor’s clinic had just recently paired up with a rheumatologist fresh out of med school. I had a choice of their well-established rheumatologist and a wait of three to six months, or the newbie. I easily chose the newbie, and found myself in her office within a week. Luck was, for once, on my side.
The rheumatologist reiterated my doctor’s diagnosis. If I was fine the next time she saw me, beginning of February, then it was reactive arthritis–if I was still sick, then it was rheumatoid arthritis. Off I went to wait and live my life.
The meloxicam was great. I wasn’t 100% better on it–but the small amount of improvement helped enormously. I no longer felt like I’d fallen down a flight of stairs. I no longer was consumed by tremors or shaking (by the time I’d seen the rheumatologist, I’d developed a symptom where I felt like one does when one is shivering from extreme cold. My muscles were aching and sore from that and it left me trembling and feeling weak from head to toe). The pain in all my joints was still there, but I actually felt like I could use them somewhat. I still had tremendous headaches, but realized that was because the pain in my shoulders and neck was making me tense up constantly.
February, I returned to the rheumatologist and had a quick awkward greeting with her. “How are you?” she asked, and I politely if flippantly responded, “Peachy.” I thought my sardonic tone was obvious, but she looked up in quick shock and said, “Really! You’re better? That’s great!”
Oh…not a greeting then, but an immediate launch into my appointment. Ah…so I clarified my situation, and she said, subdued, “Oh. Okay–you have rheumatoid arthritis. Darn–I was really hoping it was just going to be temporary.” I walked out with a prescription for methotrexate.
The methotrexate, commonly used for chemo, was amazing. Although, it too did not take me back to a sense of being completely normal and healthy, my body’s response to it was still fairly immediate. The burning feeling in my joints ameliorated, the pain in my neck finally stopped, stopping the headaches. I even began to feel as if I could use my hands again.
And so began my treatment. I’ve run out of enthusiasm–and time–for this entry, so I’m going for a fast windup here! But, I will probably continue my venting at a later time…given that my RA won’t be going away any time in my future.