Wednesday, July 25, 2012

Hitting the F'ing Wall of Acceptance - the cruel hoax and fantasy of 'normal'

Rheumatoid Arthritis diary entry 7/25/2012
The three or so days a week of good joint pain relief that the weekly-injected biological drug Enbrel has given me comes at a pretty steep price -- 2 days of fatigue, chills and stiffness after the injection. It's almost worth it for those three good days, but losing my weekends to the side effects is getting old fast. It makes travel or doing activities I like during that non-work time limited.

But it's essential so I can actually hold down a job and have that health insurance.
All that said, yesterday I did find out the limits of the efficacy of Enbrel and those "good days". I figured that my body could handle a long work day involving a lot of heavy lifting, I was wrong. A vendor come to town and had to get refreshments and stuff for the duration of the day-long demo, so on Monday PM I bought water, sodas and some other refreshments that I lugged to the car, put them in the fridge, then got up really early on Tuesday, lugged it all back into the car and then drove it all to work, where I unloaded it and got the crap upstairs and into the fridge there, made the coffee and got it all ready for the out-of-towners.

And the day went well, took notes all day (wrists all wrapped up in ace bandages, as usual, since those joints seem not to benefit from the Enbrel and are starting to deform), got everything cleaned up.

By the end of the day I was feeling it. limping and starting to hurt. My daytime meds were wearing off as well.

Then the fun began overnight. My feet and legs swelled up; the edema hurt like hell and all of the joints in my feet were on fire and screaming. So here I am in bed with my legs up, hands wrapped (I had to sleep that way for part of the night).

I guess pushing my luck with the fantasy that Enbrel's magical powers trump overdoing it when you have RA is a pointless exercise, and a good lesson in forced acceptance. But you have to hit the f*cking wall to realize just what you can and cannot do any more. So yes, I can still lift heavy crap and work long hours on little sleep, but then my RA-crippled body supercedes any pharmaceutical intervention to tell me "you fcked up."

But it wasn't all bad news this week. I went to the endocrinologist for a regular visit (I have had insulin-dependent diabetes for over 30 years now), and for the first time in decades, my A1C, or measure of how well your diabetes is being controlled over a six to 12 week period, hit an amazing target - 6.7. An explanation :
For people without diabetes, the normal range for the hemoglobin A1c test is between 4% and 5.6%. Hemoglobin A1c levels between 5.7% and 6.4% indicate increased risk of diabetes, and levels of 6.5% or higher indicate diabetes. Because studies have repeatedly shown that out-of-control diabetes results in complications from the disease, the goal for people with diabetes is a hemoglobin A1c less than 7%. 
The thing is, no matter how I altered my diet or exercise regimen over the years, I was not able to get it down in the 7.0 range. And certainly in the last few months, even on Enbrel, my physical activity level is much lower than prior to 2008, when I was able to do walking regularly pain free. What has been consistent over the last few years is that the chronic pain and inflammation has made my blood sugars run much higher than normal, and as a result, I would have to take more insulin, but even so that A1C number would not go down. I did hit 7.9, which was a pretty big victory from my POV last time the test was run.

And then I started the Enbrel in May. I have other explanation for the drop in the A1C to 6.7. My guess is that this biologic drug, which suppresses your immune system in order to reduce the inflammation of rheumatoid arthritis (the disease attacks and deforms/destroys your joints), is reducing the pain levels and general inflammation that has kept my blood glucose high despite no radical changes to my diet or exercise regimen during the last few months.

Again this shows just how systemic auto-immune diseases affect other systemic conditions; the chemical hormonal soup inside our bodies that goes haywire to produce all of these ailments is complex. That the complexity also involves problems that are invisible to others is a whole other matter. People assume because you look "fine" outside think all is well. In fact, those of us who still struggle with acceptance of physical limitations that come from within due to the nature of these illnesses, ones that don't manifest themselves as easily identifiable as a broken leg or use of a wheelchair (yet) obviously give us a chance from time to time to go into denial. And then you hit the wall.

It's doubly problematic if you're like me, stubbornly self-reliant, rarely asking for help. You're talking about someone who drove herself to the ER twice while having a kidney stone attack (that pain is a 10 out 10 on my personal pain scale). Stupidly self-reliant. I'm doing better on that front these days, so I don't do anything that extreme, but clearly I've got a ways to go after what happened this week.

But I'm sure that I'll have to hit that wall of denial and pain repeatedly to learn about the body I have today, rather than the one I used to rely on.

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