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?

Posted with Blogsy

Windy days out

Today was a good day. After listening to the wind all night, I went to the door & it was so gorgeous that I went & sat on the porch for about an hour. Mom & dad were out so I shared the porch with their cat Macy. She lets me hold her upside down like a baby, & we sat & watched the trees shake through the sky. Our neighborhood has really beautiful trees-& with the 20 mph winds the sound of the different leaves moving is hypnotic. In the backyard there's an archway with a bench & I discovered a nest which thrilled me. The arch leans like the St. Louis arch too heavy on the left side. Underneath there are big stones with butterflies, bumble bees, & dragonflies in slate blue-grey. Just being out & taking pictures was so therapeutic.

I love the textures of the branch on the right side.

The nest from the outside...

& inside.

A butterfly stone.

The leaning arch...

& the pretty wrapped, climbing vines

Posted with Blogsy

Chai bunny's new neighbor

Being housebound I don't go out. Really ever...except to doctor appointments or into my parents. Dad had found a turtle last week when mowing, & today came & told me that the turtle-we think a box turtle-was out running away from the weed eater. Mom suggested I throw bits of Chai bunny's leftover veggies to keep him safe in our fenced yard-but I was feeling ok & actually went out twice-in 107 degree heat index weather. I took a piece of carrot & found the turtle digging a pretty decent size hole to hibernate in, & when I gently lifted him out he/she hissed at me! Very Chai bunny-like behavior. Later I returned & walked right passed him without noticing. Fantastic coloring! He had eaten the tip off one side & came out & started walking. He isn't at all nervous around us to my delight...we are still trying to come up with a name-& me energy to search for him more often.

 

Posted with Blogsy

Moving to apt!

An hour-ish Chai bunny & I are moving into our apt/house in the backyard of the parents house! We've been dying to get out there but we had to get fixed in the main house first...so pics to come! Here's the paint colors & my one of a kind Indonesian Batik bedspread from our time living over there...& finally I'll be back in my own black sleigh bed after 6 long years. Much to celebrate tonight!

 

Chai bunny adopted my childhood friend Marshmallow from my dear friend Laura!

Posted with Blogsy

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.

 

Posted with Blogsy

Moving

We have now been in our new home for 15 days-my little apt out back has a ways to go, so I have been living in the house until things settle down. Chai bunny seems to be better after coming very close to death several times-right now that subject is too painful to think about. Leaving my beloved cat Zoe & dear rabbit Amsterdam buried in the backyard of the old house was too much to bear. After physically moving things that last morning for fear of my parents having heart attacks/strokes, my body is still in a major flare. We had to get my last prescription of pain meds in Alabama before we left-& ended up having to go to 2 pharmacies to find them as our usual drugstore was out. The 3 of us & my bunny & their cat rode smushed up in the front seat while we towed our car behind. I would have driven as in past times but with meds & physical condition that wasn't an option. Halfway through the trip-after food orders got mixed up & other typical problems happened-the uhaul broke down. An amazing lady dressed in her nice work clothes stopped & helped us for at least an hour while we waited on help. We ended up spending the night-sneaking pets into the hotel as it was the only hotel around & too hot to leave them in the truck...& that next morning is when Chai bunny became a rag doll, totally opposite her normal feisty demeanor. We finally got here after tears, sweat, prayers, fears, you name it Monday the 16th. I've kept a round the clock Chai bunny watching vigil, while my brother dearly had people here that next morning to unload & take the truck back. We didn't have cable, phones, Internet, etc for over ten days, but we were safe...not sound, but safe. Mom found a dr that just might work for me-neurologist who seems a lot like my old dear Dr. T, but I can't see him for about a month, so we will have to find out if & where I could get meds as I'll be without them for a week or so, & going off meds like that cold turkey is extremely dangerous. The weather here is so much hotter, & mom constantly worries about dad & heat stroke as he can't sit still & wants to get things liveable. Our refrigerator broke last week...we have had loads of these things happen & I worry mom will have a major breakdown as all our nerves are raw & bleeding. Sorry to paint such a bleak picture, but if you know me you know that I have to be honest. This is my therapy-coping-my way to vent. I wanted to catch everyone up & thank you so much for the many messages I've gotten letting me know I'm not alone. More very soon-xxxooo from us

Taken the morning of he move-sitting on the floor trying to get magical strength

Posted with Blogsy

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.

 

 

 

Day 18 WE ARE DIREWOLVES...#HAWMC WEGO

Our starting point for today is to open a book (or in my case-my kindle, though I did open the book I was reading & turn the pages) & the first sentence you see to use that & free write for 15-20 minutes. My book is the first Game of Thrones books...full of epic battles, love, loss, dragons, knights, power, the throne, kingdoms, flaws, strengths, strong women, smart men, etc. All the things you could possibly want from that genre, with a bit more. Oh, & direwolves, violence, & wildlings. ;)

'She's not a dog, she's a direwolf.' I immediately go to the 'but you don't look (or sound as I was told recently) sick' phrase all of us invisible illness people have heard at some point. We may look like a normal wolf, but we aren't...we are direwolves. We are different. Stronger. Smarter. More intuitive. I've met so many of us who seem to have or have gained these qualities from having these illnesses. We may look like a wolf, but inside, we are special. We are stronger. We are direwolves. There are many minuses in being 'special'. I don't have to waste your time in listing all of them. I've learned though that we are so much stronger, tougher, wiser, & braver in being abnormal. We have the fire inside of us. We have the strength to be vulnerable. We are on the battlefield daily, & we have many, many scars to prove it. As one of my twitter friends says, we are chronically awesome.

Pic titled The fire inside

'my dream day' WEGO #HAWMC day 14

Wow. Easy but really hard. I was so lucky & worked so hard tutoring in my off hours to work, live, & travel all over the world. I love having these memories, but I assure you sometimes they are more painful now that I'm alone & housebound. I am making my day re-visiting 3 amazing places, with J, my closest friend.

First we wake up in the coolest B&B in Tirendentes, Brazil-a tiny mountain mining town. We spent 2-3 days there about 8 years ago, & it is easily one of my alltime favorite places on earth. We will walk around, & I will be able to walk more than 3 minutes-I'll be able to keep up with him, & we will see parts of the town we missed before. Here is a link to a pic that looks identical to one of mine, somewhere in boxes in the garage.

http://www.flickr.com/photos/ricardobevilaqua/2271628610/in/photostream/

We will then magic carpet over to the Great Ocean Road in Australia, & visit the glow worm forest where you feel as if you are floating with the stars around you.

 

Then, around midnight we will jump over a few hours north of Brisbane, Australia, & go to the Mon Repos sea turtle sanctuary, where mother turtles come & lay their eggs, & then other clutches of nests erupt-the baby turtles tunneling up through the sand, down the beach, & out to sea. I got to see both one might under a full moon, & it honestly changed my life. Here's an amazing video I found...

http://vimeo.com/14136833

 

Mind on fire

This is the state of my Chaosed Mind. The scary, the part that misfires & causes me to seize up & fall, the part that causes me to lose so much strength in my hands (why I have been tested for MS twice in 4 years), the memories, the fears, the stress dreams, the fog, the over active pain center, the hopes, the wants, the needs, the creative, the stings, the grasps, the missed, the smiles, the music, the poetry

The Ring

I talked to a dear friend for over an hour tonight. I laughed so much that I cried after the call. Cried as I realized how long it had been-how much we had changed but picked up as hardly any time had gone by-discussed my future. What might be, or could be, or shouldn't be. Laughed at our past memories & stories we had lived & written. Afterwards my mind went wild, & I had to create something to quiet the possibilities in my head.

 

Sliced life

As many of my fellow sickities or those who know me know I often talk about the old me & this new me. More precisely, as it's been 5+ years, I think I should call it the now me. Today was a pretty decent day-no horrific stress dreams, pain more bearable for the first time in days, watching Justified & Southland & being amazed by such talent & incredible writing-dad finding my favorite veggie Lean Cuisine tofu strips & veggies in a tomato curry sauce, etc. Still though, I woke with a sense of doom. Seeing pics of friends & family on spring break trips thrilled me but made me long for the days of teaching ESL. One spring break I had 2 out of my 13 adult students in Little Rock who didn't have plans, so I took those 2 guys with me everywhere...out for drinks, the movies, anything-as seeing them so happy for their classmates going off on adventures yet sad to be left behind & alone crushed my heart for them. We had a blast, just doing normal things but getting to know them better-Ronaldo from Brazil, & BK from South Korea. BK opened up so much, & Ronaldo & I loved it as he & I were already good friends but seeing BK coming out of his shell was so liberating.

 

Today out in the garage, grabbing a club soda (or magic water as I lovingly refer to it) I saw some of my overseas things & student's gifts in a box, & it was the epitome of bittersweet. I don't know if I will ever fit the slices of my lives together well, but at least I can say on most days I try.

 

 

The stars in my eyes hope-ebooks save me

After getting my beloved little Kindle, I have bought & gotten free a ton of books, as well as checked out ebooks from our library. Knowing how much I want to finish The Hunger Games trilogy, start the Game of Thrones series, several Nordic thrillers, a WWII true account, etc it gives me the silent knowing that staying around will include all of these magical adventures, & help take my focus away from the pain.