Saturday, March 03, 2012

Flip Turn

Karl and Brooke are at a birthday party, Sanna has a friend over, and we've all just been fed.  The house is in a state of reasonable calm, and, well, I have missed writing here.

I was thinking this afternoon that one year ago, I was too weak to do much of anything.  I was more or less house bound two days each month, could sit in a straight back chair long enough to eat a meal but not much longer.  Today, although I have had some recent setbacks, I can do almost anything I need to do: install shelving in the rec room, work all day on cleaning and organizing a room (stopping only for beer), and actually honestly work out.  Me.  Work out.  Weird.

In December, I was having more pain in my hands and feeling not so awesome with the side effects of methotrexate.  I've never been worried about being too graphic here, but let's just say that my mucous membranes were under siege, and what should not have been uncomfortable made me feel like I was being split in two with every bowel movement.  My hair was falling out in greater amounts, and I had to get it cut short to keep it light and fluffy.  There were other ways in which I was being a wimp about MTX, so I asked, and Dr. R2 dropped me to 17.5mg.

Two weeks later, I was at my PCP's office with a hot, prickly sensation over my back and chest.  The PCP nodded solemnly and told me it was one of three things:
1. A virus of some kind, in which case it was probably self-limiting
2. Medication reaction to the MTX (unlikely because my dose was now lower and I had been on it so long)
3. Some kind of disease process related to my arthropathy

I took Zyrtec for a few days, and it went away.

In January, around the time I was due for even more bloodwork, I was thinking I was feeling even less awesome and wanted to go back to 20mg.  I was also in a massively stressful situation at work involving reduction in force, and I had to lay off one of the incredible and amazing people I work with.  And my elbows broke out in some kind of eczemous rash--just my elbows, just the tips of my elbows.  The rash resisted hypoallergenic lotion, Aquaphor, and hydrocortisone.  I went back to the PCP, nodded solemnly and told me it was one of three things:
1. A stress reaction of some kind, in which case it was probably self-limiting
2. Dry skin
3. Some kind of disease process related to my arthropathy

But this time, I left with drugs.

I went for my routine bloodwork only to find that my white count was low enough to merit another dose adjustment.

I've been experiencing some of the extreme neck pain I dealt with around the time that we moved, bad enough to make me rummage through bins for any leftover Tylenol-3.  I didn't find any, so I have been self-treating with leftover prednisone.  It has made the neck pain manageable and allowed me to get by with more regular chiropractic adjustments.

We joined the Y in town a couple of weeks ago, around the time that I started being able to feel even worse from the dose adjustment.  I worked out four times last week and four times this week.  It's hard, no doubt. I'm convinced it's worth it, even though it means leaving the house at 5:30 just for a 30-minute workout.

Readers who don't know me in real life probably don't know that I was once a pretty good swimmer.  I competed regionally, placed highly locally, and was recruited to compete in college, offered the opportunity to swim for tuition, even.  Instead, the day of the last regional swim meet of my senior year of high school was the last day I swam over that long, black tiled I, the last time I wore a cap and goggles, the last time I felt the spiraling plastic lane markers brush my shoulders.  I had been swimming, worn a suit and splashed in the water, lazed about next to a plastic slide with my kids, but I had not truly done any swimming in 15 years.

Until last week.  I bought an appropriate suit (then returned it for a larger size! I have grown more than I thought since high school!), goggles, and a latex swim cap.  On Fat Tuesday, I slid into the shallow end of an unoccupied lane 10 minutes after the Y opened.  I ducked under the water and pushed off, and I swam.  When I got to the other side, I took a breath and let muscle memory take over.  My flip turn was fluid, natural.  It felt really good.

It's okay that I'm not doing awesome.  I will find a balance with drugs, maybe try out a new inhibitor of inflammation that's due to be approved in August (tofacitinib) if Dr. R2 and the insurance will let me, and the exercise.  I am still considering training for a local triathlon, or rather, I am going to train as though I'm doing it, and maybe I will actually compete.


teeveezed said...

I tried swimming before being diagnosed with M.E., it nearly killed me. Now I just bob around in my pool to get cool.
I hope you find your medication balance soon. :) said...

I hope that you're feeling well. Our kids are roughly the same age and I've always enjoyed your story and voice. You're missed by your readers!