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?

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Stillness

Some days the impact of what I CAN'T do overwhelms me. I've been living this way for years now, but certain days I wake up from dreams in which I'm not sick, then realize I still am. It's quite a cruelty joke-in my dreams I run, dance, love, date, am with friends...then the stillness hits me.

 

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Who I was & what I wore

Funny how our wardrobes somewhat dictate or openly invite the world into our personalities-we show them very intimate facts about us simply by what we wear. Who I used to be vs now are as polar as opposites can be. People like me wear elastic waist to avoid buttons. Panties 2-3 sizes to big so as little material as possible touches us-for me my lower spine. Clothing becomes something to tolerate, not express. For a fashion lover like I am it absolutely sucks. I had to go through my wardrobe today to keep, donate, or throw away. Several things had literally worn out-evidently I worked & played really hard ;). Seeing my grad school/Little Rock years gutted me. Amazing how an item of clothing can hold more memories than a camera. Some items I had to keep, way to old & small, but to put in the back of a drawer to pull out when I need to remember. Here is who I used to be, that few of you were able to meet.

 

My absolute ultimate me item. A very thin long sleeved patchwork shirt-ripped, sewn & repaired beyond repair, & scented with Brazil nights on the beach, teaching days at UALR, & my old tangerine perfume. I so gently put one hand & arm through a sleeve, just to feel the old me again.

My orange long patchwork skirt. Usually worn with combat boots, a denim shirt & confidence. So great how a piece of clothing gives you confidence that no self help book ever could. It too was worn all over Little Rock, Brazil, etc. I normally wore it with the next item.

 

The simple denim shirt/jacket combo. The pockets were over the chest, & great to stick money, my ID, phone, & lip balm in...look closely at the bottom right of the pocket & you'll see the cylinder shape of a Burt's Bees lip balm. I wore this as a shirt or jacket at least 3-5 times a week.

 

My wardrobe had loads of shirts & jeans paired with blazers & tennis shoes. The blazer dressed it up for teaching, & the shoes for walking all around that seemingly huge campus. I loved mixing stripes, so I often wore pinstriped blazers with totally random striped tees.

 

My favorite statement...'your future ex-girlfriend'. The dating scene post divorce, being overseas for a decade, etc was a new world. I was shocked people still stood you up, broke up through emails, & other fun dating no-nos. I quickly developed a cynical outlook but deep down was the 12 year old asking 'why didn't he like me?'. This shirt at least made me feel that to those possible idiots I wasn't as sweet as I seemed in that aspect.

I don't know who I am now. My wardrobe reflects so little of my true nature, & that is one of the unspoken losses invisible illness people often face...so the next time you see someone like me, remember them for who they used to be able to show.

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Day 22 things we forget #HAWMC/WEGO

There is a popular site where people post pics of notes & post it's with a message left in various places. Some funny, sweet, touching, etc. We are to do so & if we can't post it, pretend. Where would you leave it? What will it say? I couldn't decide, so I'm doing 2.

When I was 14, I was having horrible cramps & I would miss days of school & work monthly. My first gynecologist told me 'when you see blood, you see pain'. He quickly became my ex-doctor. Fast-forward 4 years & after having every surgery & procedure (including self injections into my stomach for 6 months) I had a complete hysterectomy. In passing as he was the local dr in our small town he said before I had the surgery (though e wasn't my dr) that 'you will fall in love this first semester of college & no man will marry you because you can't have kids). I was strong enough to know to listen to my body. I had severe endometriosis & I knew something wasn't right. My post it would say 'always trust what your body is telling you' & leave it in as many waiting rooms, hospitals, nurses stations, etc as I could.

 

My second post it would simply be 'Savor it all'. Savor that movie-that meal out with friends. That first date, kiss. Savor that trip to Target. Really enjoy sitting in that coffee shop. Savor the powerful fun in driving your car. Today, national record store day, I really missed not getting to go & flip through cd & record bins & finding that hidden gem, or new import vinyl, or an oldie you've always meant to pick up. Some days being really & truly housebound for all intense purposes hits home. For some reason, that was today. I would leave that note in mundane places where people take living for granted. At the cashier line, or a table at a local dive bar. In a bus seat or a cab. On the dashboards of cars or on people's front doors. Here is me, trying to savor listening to some records, & holding a lost dried petal from a photo shoot I had earlier in the week before the flowers get tossed & we move.