Friday, March 07, 2008

Sunday Scribblings: Experiment (al)

These haven't been the most pleasant weeks. Late Brazilian summer is bringing really hot temperatures and my house has sun exposure from sunup to sundown. Baking heat. I think I could gently roast a turkey in my living room from 1 to 5 pm if I tried...

I've been waking up with that syndrome they call morning stiffness. I prefer to think of it as one step prior to rigor mortis. I fought with myself this morning for two hours, trying to figure out a good reason to get out of bed, to attempt to wiggle my toes, trying very hard to not have to get up and penguin waddle to the bathroom. These things attached to my legs are puffy replicas of actual human feet. At 8 am, I'm not sure they actually qualify.

My morning pages are fun too, as they tend to be typed with the left hand and one finger of my right, depending on how swollen my wrist has decided to be...

So I've kind of been feeling sorry for myself, lately. I dreamed about climbing last night and woke up really sad, because that's something totally out of my league now. I ached to be on a wall, tasted chalk dust on my tongue, felt the scratch of the holds under my hands...it stayed with me the whole day. They say that people with rheumatoid arthritis have difficulty just working a regular job after 10 or 20 years of the disease. I'm at 8 years. I'm hoping that I'm not on the low end of that scale. I don't think I'm close yet. But these last few weeks, I have definitely seen difficulties increase. I have a sink full of dishes because I couldn't face washing them (and was afraid I'd drop the plates, which happens much too often). They have been sitting there for two days. My laundry? Just got washed last week, because a kind friend let me use her washer and dryer. Someone spilled beer on my pants today; I'm trying to figure out how I'm going to wash my clothes. I guess I'll have to call in a favor from the neighbors.

I'm starting to kind of wish I had a roommate. Or personal assistant. (Or let's be honest: servant?) Because some days, this is all too much for me. A 2 liter of water too heavy. Folding clothes and putting them away takes a half an hour. Washing laundry occasion to contemplate the virtues of amputation...just kidding. Let's not even talk about food. Between my schedule and my energy levels...bananas and chocolate milk are STILL my best friends. Even a self-pitying arthritic can manage to swirl a spoon.

I've experimented lots of "cures" in these eight years:

Natural medicine. (Proof of my mother's love for me--when the regular medicines weren't working, my normally very conservative mother took me to a big yellow house in Bloomington where a well-meaning but totally crackpot lady put bottles of pills in my hands and pushed on my arms, then loaded us up with $200 worth of rancid tasting Chinese supplements, which I managed to swallow for two months before realizing that their biggest accomplishment was giving me herbal belches.)

Atrociously expensive medications which I had to inject twice a week into fatty areas. (Much harder to do than it sounds; I still remember watching the factory packed needles bounce off my belly as they were inferiorly sharpened...)

Steroids. (Moon face.)

Prayer chains. (Which make me feel super guilty and faith-less after no miraculous healing takes place. I don't let people bully me into them anymore. A thorn in the flesh sometimes just has to be borne.)

Special diets. (Vegetarian. One or two weeks of veganism. Starvation. That one works, but there's no way to keep it up...a day of fasting=one day of feeling wonderful, except for the nagging stomach and the desire to attack anything that even smells like calories! Super-low-calorie diets didn't work either--measuring almonds isn't worth it.)

I guess I'll experiment forever. Some of the experiments have proved helpful, if not miraculous. Pork, for instance, does a bitter number on me. So bacon and sausage are very, very rare occurrences. Mostly for McDonald's Bacon Egg and Cheese breakfast biscuits, which are my favorite home-from-the-airport food.

I intend to keep on experimenting, if for no other reason than to not let the "oh, woe is me" crowd of grumpy thoughts that run around like gerbils on an exercise wheel get in the way of my real life. Even if that means getting up swollen to go walk three kilometers in the air-conditioned gym. Or if that means taking dance lessons regardless of the fact that I can't do all the moves. And it doesn't have to be just about drugs and exercise. Experimentation goes a long way. It's about trying new things and not being afraid to fail...I've become so much more courageous SINCE arthritis and not the other way around. It's about "taking every thought captive." It's about trying, for once, to actually take my own advice. Take, for instance, the gerbils in my mind. I could experiment with putting them in permanent hibernation. I could ask for help once in a while. Maybe even admit that this simple lifestyle is great, but I can't do laundry by hand anymore. And that's nothing to be ashamed about.

Nor is announcing my weakness over the blogwaves...because really? Who is strong 100% of the time? And who wants to be?

7 comments:

tumblewords said...

Asking for help is one of the hardest things in the world, I think. In a perfect world, help would just BE there and there'd be no guilt or asking. Keep experimenting! It's a good thing. And keep writing - you are an incredibly fine wordcrafter.

paisley said...

this was so honest,, so intimate... i have no chronic physical ailments,, and i have dirty dishes and laundry that could be done too.. so don't fret,, you are not alone...

i hope one of the experiments will eventually allow you more mobility and less discomfort...

myrtle beached whale said...

A very honest post. I wish you all the best. I have a suggestion for something that could help your condition immensely. You can find out about it at www.rickwainright.com. It is not available in Brazil but we could work that out.

Linda Jacobs said...

It's hard for me to find time to read all the prose posts but I'm so glad I read yours! Your style of writing pulled me right in and your attitude shines in every line!

gautami tripathy said...

You are god writer. Honest too. That makes it very interesting.

Refluxing Life

--jenna said...

Tumblewords, Linda and Gautami: Thank you for the encouragement and writing style praises. I'm flattered...and beginning to harbor fantasies of writing something more substantial than just blog posts...

Paisley and Myrtle: It's quite daunting to be open in such a public venue, but I hope that my own honesty encourages others to do the same. It really is freeing...and I'll check out that website. :) Thanks for letting me know that I'm not alone!

LittleWing said...

hi jenna... yes, as spoken previous in comments your life comes across the screen so real and honest making us/me want to reach out and hug you just for the sake of hug... my parents both had/have RA for years and use to make monthly runs across the mexican border for their medication... my mom use to get steroid shots in her shoulders and neck... relieve at whatever costs... she sewed and painted and gardened for as long as she could.. when you mentioned that you longed to do things you ahd done previously i thought of my mommee... nights she would get terrible cramps in her legs and hands... some days she could not move at all... my heart goes out to you... some of my siblings also have RA... can barely lift her arms or hold things in her hand... i hope you will continue to post to hear how you are doing ...