Thursday, November 8, 2012
Letter to my illness-day 8
Dear Fibromyalgia,
I've started to view you as an alien life form who for whatever reason-low immune system shields-availability of bases & posts around my body-unguarded borders...you chose me to invade & live inside. After using me for many, many years, you busted out of me to let yourself finally be identified (like the being in the fantastic film Alien) close to a decade ago. Funny-you had been using me as a vacation home for years, & in those times I would get really sick with random illnesses & symptoms.
Some years you would go skiing in my throat & glands...I would get strep throat yearly during your trips, & when you committed to buying the ski condo & all of your financing came through I became a carrier of strep throat, & you then started really almost annexing my mother. She kept getting strep, taking antibiotics, getting better, then starting all over until her doctor realized a carrier was afoot. He asked her to bring in the entire family to be tested & of course her gut told her it was me. She had been getting postcards from you since I was a few years old. You took a long winter holiday when I got mono, this time touring my entire body, taking time to really see the sights. After that visit I never really was the same. Deep down I feel there is some connection to that illness trip & fibro-after that my body never seemed to recover. After that you came to visit much more frequently, as if you lived part-time on your planet & the rest on me. I never even got a t-shirt! No hostess gift? Really bad manners!
You set up a permanent vacation home in my uterus & started visiting monthly when I was in 6th grade. You had starting getting serious with endometriosis & that little dalliance cost me untold surgeries, insane medication treatments like birth control at age 12 which never helped & only kept me nauseated for months & did the opposite of what it was supposed to. Instead of stopping my periods you & endo revolted & I was having 2-3 periods a month. My doctor was such a prick too-saying 'oh no, you're just spotting'-so I made my poor mom take me back in to make him examine me to which he said 'well, you aren't spotting-this is a very heavy flow' which gave me a bit of temporary delight! He would later go on to gift me with such gems as 'if you have a hysterectomy you will fall in love & no man will ever love or marry you' which is MAYBE why I married someone I shouldn't have & of course ended up divorcing...I think you were up in my brain by that point. Why else would I do such a foolish thing just to get back at said doctor? I found another doctor who indeed did the hysterectomy, only after 3 others refused to do the surgery. They didn't want your theoretical blood on their hands.
After endo split I seemed to be better. Your hiking trips in my vascular brain systems would leave me with migraines, & your float trips in my stomach left my bladder & colon in quite a state-I never did get my security deposits back by the way-but you did seem to retreat a bit. Maybe you got depressed after I seemed to defeat endo. You guys hooked back up for a little while & I had 2-3 more laser surgeries, & endo had been left behind & continued to grow in my sciatic nerve notch, & almost perforated my colon. By that time you had started drilling in my left sciatic region & I spent so much time having my periformis muscle cut & that major surgery, going & fighting with a pain clinic who ultimately (after you evaded them) couldn't figure me out & thought I was just crazy & that it was all in my head (little did they know you actually were!) & various nerve tests, more treatments, etc.
You built a beach house in my bladder when you met interstitial cystitis (IC). Not having insurance then was such a treat! My defense team spent so much money fighting too! Poor team had no clue what they were up against! You & IC still see each other & I think you always will. Kind of one of those see each other every 6 months kind of deal, huh? You finally declared yourself & opened up Area 51 about 8 years ago. I fell & had boxes containing reams of typing paper (100 or more pounds) on top of me, pining me to the floor while in graduate school, & after a local clinic sent me to an ortho, having MRIs, bloodwork, you know he usual suspects he ruled out lupus & found you. You cost me friends, which still stings, lost me jobs, dignity, grace, humanity sometimes. Instead of going out to dinner, the movies, weddings, births, etc I stay in with you & let me just say you are a shitty companion. You've dated depression, anxiety, flirted with MS a lot...you get more action than I ever will! I would ask to live vicariously through you but...gross. You've immigrated to me 100% now. You aren't going anywhere, are you? Do you ever feel guilty? You must really be the scary kind of alien, not the ET variety. If only I could disguise you. Dress you up & hide you among Chai bunny's stuffed friends. I feel like (in the little painting above) after you came out, I just had to surrender my life & old world to you without being able to really fight-I will always continue to fight, but that battle in graduate school, lying on the thin, dirty carpet I lost. I started just weeping, which my old friend interpreted as my frustration with my job & thesis trouble, not knowing I saw the real face of you-in your terrifying strength, & knew I would never be the same. I saw my future in your eyes, & my tears were more for that than pain streaking through my body.
So maybe you could throw me a bone & bring me a GOOD souvenir one day? A snow globe at least? Even a map of your adventures could be used to study, maybe even make breakthroughs. I know we will never, ever get along, but maybe you could think about a ceasefire every once in a while?
Monday, March 26, 2012
Feeling fully
Feeling so many emotions at once, I can't even express properly, so I'll let the pic speak for itself.
Friday, March 23, 2012
The disguise
I painted a picture recently that turned out horribly. Really just awful...it was a flower, possibly a Poppy that grew outside an apartment I lived in during my time in the Czech Republic. This morning I put the painting through the fantastic Percolator photo app, & it turned out really cool. It so reminded me of a chronic illness-fibromyalgia, interstitial cystitis, rheumatoid arthritis, chronic fatigue syndrome, etc. It is such an ugly disease, but when mixed with a person it looks normal. They don't look sick. Anyone with an illness like this-even emotional illnesses as well know this too well-the 'you don't look sick' thing. Anyway, this painting just brought that disguised normality home today.
Wednesday, July 13, 2011
An awfully good not so bad day

Riding to the dr at 7:43 AM.

Dad by my side as I was hunched over, trying not to cry-listening to Wye Oak, Sarah Jarosz, & others.

After dropping off prescriptions, I waited in the car while dad did some grocery shopping, & even surprised me with fried okra...only in the south can you procure that at 10 AM! Love fried ocra...

Entertaining myself while waiting for dad. Thank you iPod & great music!

Looking down & taking my mind to Brazil, the best vacation ever (where I got & designed this aquamarine ring).

Looking in the rearview mirror watching so I could unlock the car for dad, & my surprise okra!

Loving that having my rabbit reading pocket watch necklace, we could time & not get to the pharmacy to early. Dad said if the dr had some answers & got me on meds & it rained it would be a great day...didn't rain, but otherwise, even under the circumstances, he & I had a really good day. : )
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