Monday, February 25, 2013

A Real Game Changer

Since about 1984 I have been living with an autoimmune disease. In the beginning, it was diagnosed as systemic lupus erythematosis (SLE), but after many years the symptoms changed and became more like rheumatoid arthritis (RA), now being relabeled in some medical circles as rheumatoid autoimmune disease (RAD). The last name is probably more accurate as the arthritis is more of a symptom of the disease than the actual disorder itself. My doctor ran new labs and sure enough....RA. That was in 2004.

In my blogs, I generally try to have fun, write about the critters who live here, family, my book and the upcoming sequel....things like that. Even so,  I also want to use it as a platform to address physical illness.

I've lived for remission. I've prayed and believed for healing. Neither have happened in this body. As a result, I've been able to achieve a level of empathy for the ill and disabled that I might not otherwise have gained on my own.

I've been told by some people that I haven't been healed because I don't have enough faith. My sarcastic nature wants to rip into that statement and tear it apart, but that's not the mission here. (And it just ain't nice!)

Here's the truth: I hurt. Everyday I hurt. I take methotrexate and folic acid and tramadol and vicodin. I count calories. I walk. And when I can't go out and walk, I walk in place in my living room. I knit to keep my fingers moving. I lay in the bed at night and cry. None of the meds have longterm effects on me. My genetic makeup doesn't allow it.

What do I do in the meantime? I social network;  I write stories and novels;  I read; I research on the internet for foods that don't have inflammatory agents; I pray; I journal; I pray (did I mention that one before?); I lay awake at night and toss and turn. Sometimes I only think about tossing and turning because my hips hurt too much to move. When I get up in the morning I cringe knowing that my feet are going to scream back at me in rebellion.. I usually wish the day would start later since most of my discomfort is in the morning. I take HOT baths. I lay in the water and my husband thinks I'm cooking. Sometimes he says "are you done yet?" (I'm not sure if he mean "finished" or "well done".)

Despite everything I've lived with for almost 30 years, I am thankful. for a husband who loves me and takes care of me and encourages me in anything and everything I attempt to do. He always tells me he came into this relationship with eyes wide open, knowing full well what he was getting himself into. I am thankful for a friend who suffers from MS because she REALLY and TRULY understands what I live with...because she lives with it, too, on a whole different level. I am thankful for friends who don't always say "how are you feeling today?" They know I probably feel awful and for whatever reason, don't ask. (Maybe they don't really want to know; maybe they are being respectful; maybe they already know the answer, maybe all of the aforementioned or none of them at all.) At any rate, I appreciate them.

I am thankful to live in a beautiful place with two awesome picture windows that I can gaze out of and admire the beautiful mountains around me, the deer who live in the yard, the cats who sit on the banister, watch the snow fall and the trees bend in the breeze, and sometimes the bears who wander by.

And believe it or not, I am thankful for RA or RAD, whichever you choose to call it, because it makes me thankful for the little things. Things like 15 minutes without pain or stiffness. Things like a chick flick with my best friend, cuddling with one of my enormous cats, folding laundry, mopping the floors, folding a blanket,  cooking pasta with my honey or brushing my cats. Sure those things sound mundane, but when you can't do them or it is a chore of great magnitude to do them, they are HUGE things.

Thanks for reading my whine blog. I promise the next one won't be so depressing. You're all amazing!

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