Tuesday, July 26, 2011

take me back

I spent about 10 minutes laying on my left side, with my arm under my head, and my legs curled up.  My left hip is on fire and my shoulder is so weak and stiff that I can hardly stand to bring my arm up from my side.  It is starting to radiate pain down my arm through to my elbow, and spread across the left side of my upper back.

I tried to grab the roll of toilet paper in the bathroom, and it was too hard to use my left arm, so I had to keep it lamely at my side while I reached with my right arm.  I came back to the living room and told J.W. what had happened.

After that, I cried.  Just for a minute.  Quietly, so he didn't hear, even though he was sitting right next to me.  I think if I tried to talk about it to him I wouldn't have been able to stop.

I don't remember what it's like to be able to just get up and move around without stiffness.  To bend down and pick up something off the floor without having to grab something for support on the way back up.  To lay down on the couch any which way I want without having to think it through beforehand.

Thursday, July 7, 2011

murphy's law

The kids and I have been pretty active since Susannah finished up preschool and the summer officially began.  Lots of trips to the beach, even if just for an hour or two, some time spent at the playground, a trip to the mini zoo and a little swimming in the pool at my mom's.  My body has been behaving while we're out and about, even though I've had quite a few painful flares pop up in the evenings.  Overall, I haven't had too many complaints.

We have been taking it easy the past couple of days, which was supposed to give me some quality knitting time.  I actually finished up my first project in a couple of months last week, a Posy tank for Emily using Knit One Crochet Too 2nd Time Cotton in Avocado.  I decided to frog (that's unravel, for you non-knitters) a sweater I had started last year for my mom, since it was shaping up to be more fitting for me, and start over in a smaller size.  I figured I would at least be back to where I joined the neckline by the busy work weekend, which starts tonight, since I had all this free time on my hands and no plans to do anything more than take the girls to swimming this morning.

Of course, my right hand decided to swell every night this week.  Normally that wouldn't stop me, but I was actually getting a little clumsy with my needles, so I didn't want to compromise the finished product.  My left hand and both wrists are acting up too, something that doesn't happen nearly as often as the swelling in my right hand.

Now I am about to get ready for the start of a 6-shift weekend at work.  I work in a restaurant, so there's plenty of walking around to be had, and quite a bit of standing still, which is much worse for my hips and knees than the walking.  Aside from a flare last Wednesday night where my right knee painfully puffed up, the joints in my lower body have been feeling pretty normal recently.  Another "of course" - my left hip and knee have been on fire on and off today and I've been getting some lovely nerve pain all the way down to my ankle.

Murphy's Law is just plain evil.

Wednesday, July 6, 2011

today was a good day

My rheumatologist is usually booked 6-8 weeks out, so when I finally called a couple of weeks ago to schedule an appointment, the earliest I could get in was August 10th.  (He only sees patients on Wednesdays at this particular location, which definitely accounts for the wait.)  I don't know why I had never thought of this before, but I called this morning to ask about cancellations, and gave the receptionist my number.  I figured I would just call every Wednesday up until the day of the appointment to see if I could get in, but I happened to get in today.  Sweet!

I had to bring the kids with me, and they were incredibly good for the two hours we were there - including the five minutes I had to leave them under the watch of the receptionist at x-ray, since they couldn't come in there with me.  I had my appointment with Dr. Rheumy, a TB test, labs, and x-rays of my hands and wrists.  The new med plan is to continue my 15mg/week of methotrexate, then inject Enbrel 1x/week (pending the normal TB test, of course, since tuberculosis is one of the several serious infections a person on biologics is susceptible to), while adding in 1mg/day of folic acid and a prednisone burst/taper for the next 10 days.  I told him that Dr. Primary (did I mention I found a PCP?!) wanted to prescribe Prilosec so I could reduce the wear and tear on my stomach from Aleve, and he told me he had a coupon for a new drug (called Vimovo) that is a combination of 500mg naproxen and 20mg Nexium.  I'm sure in the long run, generic Prilosec and naproxen will save money, but the first time filling the Vimovo is free with the discount card, so I figure it can't hurt to try.  Then he sent me for a CBC, ESR, CRP, RF, CCP, and hepatic profile, just to see how things look compared to this time last year, when I was diagnosed.  (I was supposed to have the hepatic profile and CBC done every 6-8 weeks on the MTX...this is the first time it's being run since last July.  Whoops.)

All that boring med talk aside, I feel pretty relieved that I've got this appointment over and done with and that Dr. Rheumy didn't hesitate to move on to biologics.  I don't think another 8 week trial of MTX would have really done much other than confirm that while it seems to work to a degree, I still have plenty of pain and stiffness to go around.

The girls got rewards of a lollipop between Dr. Rheumy and the wait for labs/x-rays, stove-popped popcorn and Despicable Me after we got home, and  Ralph's ices after dinner.  If they were that quiet all the time, I would have to seriously think about a way to reward them that doesn't include pumping them full of sugar.  One thing at a time, right?