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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Making the bed

I've been really sick lately. My body seems to have forgotten what proper seasons feel like, & for over a week my sinus/allergies/cold has switched into high gear. Crazy how my body forgets how to fight & adjust to something I lived with over half of my life...after living 5+ years without seasons, my compromised body doesn't know what on earth to do. All I know is that if I don't see real snow after the packing, moving, stress, etc I will flip out. Dad found a bottom/fitted sheet & brought it over. He is really busy today, so I made myself switch around the mattress pad, put on a bottom sheet, & rearrange the batik bedspread so he didn't have to come back over. I have been so happy to just have a bed, tv, fridge, & Chai bunny I've lived without a sheet for a couple of months. Your priorities change when you focus on just getting through each day & night as best you can. Chai bunny loves the new & improved bed, jumping up & thumping so hard she bounced to announce to the bed that she had arrived. Of course my body is cursing me for not waiting for bed-making help, but as the parents are sick with cold front colds too, I just wanted to do something for myself. Mom sent me these roses from one of our many flower bushes last week, & today as they are dying I fell in love with the poppy-like look of the huge middles & had to take a picture. An almost dried Cabbage Rose, watching My Name Is Earl on Netflix, & Chai bunny visits set my mind at ease a bit as I try to breathe deep & fight through one more day. & fresh sheets are just the icing on my happy little cake ;)

 

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Migraine dazes

I don't have migraine headaches often, but when I do they take me under. After taking Chai bunny to the vet Wednesday, I took a nap & woke up feeling as if my neck was in a vice & there was a softball between my eyes, pulsating & waiting to explode. It is still here but has moved to the right temple. All I can do is try to sit or recline while supporting my neck until this passes. I will fill you in later about Chai bunny's magical adventure ;)

 

 

Day 25-memory from another view-#HAWMC/WEGO health

The girl sits on the bed-naked-as any clothing that touches her skin feels like an attack of needles. She has an ice pack propped up on a pillow placed carefully so it covers two inflamed areas on her lower back of the spinal shots from earlier that day. Her left sciatic nerve starting in her back & radiating down the back of her leg & the top & bottom of her foot feels as though an electric prod combined with a vice is irritating the nerve constantly. It never lets up. Her left hip is so tender to the touch she hasn't slept on it-hasn't even leaned over on it-for the past 7 years. She tries to watch tv to take her focus off of the pain yet can't focus. She switches to Netflix on her iPad, trying in vain to find anything that can help focus her damaged brain's pain center elsewhere. After starting & stopping at least 3 different movies she finally settles on one. Tears start falling onto the screen. Beside her the bed softly indents as her house rabbit, Chai, as carefully as she can jumps up on the bed. Chai starts licking the sheets which in bunny means 'deep affection'. She puts her front paws up on the girl's left shoulder & touches noses with her. She barely licks her arm, but as it feels like acid she stops & hops around in front & licks the bedspread, pillows, & any clothing on the bed. As she examines the girl one last time she gives final licks & slowly jumps off the bed, flops down next to one of her stuffed rabbit friends as the girl smiles.

 

Chai bunny saves my night

I'm home alone for a few days, & after getting a call that left me in tears, I went to get my beloved bunny. I have been staying downstairs as Macy, the parents' cat, gets very upset & cries nonstop when they're gone. So Chai bunny making her excited going downstairs breathing noises was so cute-so nervous as she hasn't been back on my parents bed in forever. She was so shy at first, all huddled into me, cooing & softly making the sweetest, most tender crying-like noises as we cuddled. She got brave of course & hopped around the bed...in my room she's up & down on the bed constantly, but she was in newish territory. I got a few hilarious pics, one which got retweeted as cutest pic of the day on twitter (us watching Alcatraz together) & an under the chin shot where she looks like a shark-dolphin. She cheered me up, & I can't wait to bring her down later today. As anyone with a chronic illness knows, having the all consuming love of a pet is indeed the best medicine.

 

 

 

 

 

Heating pads & terrored thoughts

After my 4 filling go around a couple of days ago, my back jaw tooth is starting to lessen pain wise, but the jaw & neck strain of one with TMJ has hit hard tonight. I've been laying on my angry back so I can have my head propped up with that strangely uncalming blue heating pad behind my neck, offcentered to the left with my face trying it's best to keep my unhelpful left jaw somewhere near the heat. The featured pic is reversed, as I have no good light source at present on that side, but hopefully you get the point.

 

My heart ached as I just finished a funny, grieving, poignant mystery wrapped in an unlikely love story from a British TV series on Netflix. Thinking of moving on-& the evidently us moving to Arkansas hits my heart with a panicked bolt of terror. Yes there are pain clinics...but have doctors moved there since I left who can do the spinal shots? My first Little Rock doctor did shots but at the source of the pain-not the root where the pain originated. Yes, I'm told pain killers like I take here are probably possible, but that alone isn't enough. And probably? Probably? I silently start weeping, quietly as Chai bunny has been so concerned & up on my bed no less than 7 times in the past few days-tears running down my half-hot face as I ponder 'probably'. Sitting in my primary care doctor's office Wednesday, I felt like I was holding out as I could tell she knew I was holding out, as I can't figure out how to say the words 'we are probably moving. In a few months'. Dad made the 6 month blood tests & follow-up as I waited in the car, not being able to stand lying in her office anymore. I asked him why we even made an appointment that we know we probably won't be keeping. It came out harsh when it meant to come out terrorized, but my brain is so lost it doesn't know how to communicate anymore. I just wish I could have a heating pad wrapped inside my head, go into a coma-like state & not come out until there were no more probablys, & only things have been made markedly better with your 3+ medical specialists.

 

The cleaning fiasco

Went to get my teeth cleaned today. Huge phobia of dentists, & hadn't had my teeth cleaned in a long while. Those of you professional spoonie sick people get how seeing 3-5 doctors regularly doesn't leave much time for dentists, & disability doesn't cover dentists. Lovely. Anyway, after getting 2 out of my 4 needed fillings & learning that laughing gas really helps keep my back ok during the process, I agreed to get the cleaning as they promised having laughing gas to get me through it was fine. They were fitting me in, so dad & I waited for about 30 minutes, in chairs that hurt so much, which feels ridiculous saying, much less typing & publishing for the world to see. I kept thinking, 'well, you'll be under the gas soon' to keep me from leaving. So they call me back & we soon hear that oh no! The one room in the joint that doesn't have gas in it is her room. She suggests we just do full mouth X-rays. Against my better judgement I agree. Dad had to run an errand & left. She not only does X-rays but for some unknown reason does every single tiny bit of every tooth with that evil 2-sided hook torture tool, while I'm bleeding everywhere & she is scolding me for not coming in sooner as my insurance, bought from them runs out in a few weeks. She calls dad back & tells him how bad my gums are & that I need serious gum therapy. This is now an hour and a half later. She brings my dentist in as he has to check me before I leave. He comes in & all four of us are in the room, & tears start just pouring down my face...though I'm completely silent. She didn't mean to but blamed the medications, stress, etc for why my gums are so bad. & heredity of course. We finally leave, & I weep openly for about an hour after. I now have a back that is screaming in pain, & it feels like muscles are being fed through a meat grinder while still attached to my bones, ligaments, & spine. Chai bunny got in bed with me & tore apart the goodie bag with the free floss, toothbrush & paste, as if she sensed hat new foreign bag was the source of my crying. So Monday I have part 2 of a promised gas filled cleaning, & Tuesday my 2 other fillings get filled. Then the next week neurologist to give spinal hots to try & undo the damage done today.

 

 

 

Chai bunny & the Oscars

Yesterday morning before I went to sleep (we're nocturnal...it's called 'painsomnia') Chai bunny & I played in the spare room. I had been gearing up for the Oscars & per usual talked out loud to myself & her about my predictions, the fashion, etc. Keeping that in mind here are some of the scenarios Chai acted out ;)

 

Showing the back of her dress & face

 

Reaching back in her limo to get her clutch purse

 

The accidental nip slip ;)

 

And after a great night going to drink at the Vanity Fair party...;)

Chai bunny, false mommy to be

Female rabbits can fairly often think that they are pregnant...& Chai bunny is no different. She has a nest built up in the closet-& when I say built up I mean it's a foot high, & she goes in the neck of a sweatshirt & the inside body is full of her own pulled out fur, newspapers, bags, phone book pages, hay, etc. She currently has Sugar, the left foot of my old bunny slippers, guarding the nest-face down in the fur lining of the entrance to said hutch. While Sloan & family were here Chai took Sugar & Spice (the right slipper) into the closet on guard duty. Spice is currently sitting with his face touching, not just under, Chai's water bottle tube. She managed to sneak an old washcloth halfway across the room on its way to the nest before I got it...she keeps my life interesting in more ways than I can begin to explain. Here are a few photo-manipulated shots of her begging for treats beside my bed & enjoying them like the little whiny grunty pig dog she is ;)

 

 

 

Pretty fluff

  In many flower arrangements, the filler is often some generic, fluffy stuff. It tends to be ignored & dismissed & is often bland to make the beauty of the flowers stand out...like a bride next to ugly bridesmaid dresses. I woke up today with Chai bunny thumping me awake & saving me from my nightmare, got up & wondered if it was my moaning in pain that alarmed her instead. I try & take these awful painful extra morphine days as the fluff, so that the less painful days really stand out.

 

F is for firing flare-fall

 So a couple of nights ago I fell again, but for the 2nd time in just a few months it was what I fondly call a tree fall. I get dizzy, start to fall, & instead of my arms or hands coming up to assist me, they flake out. I just fall like a cut tree without my reflexes or time to yell timber. After going to the ER & being given the all clear, I headed to my neurologist for my monthly appt. the timing couldn't have been better. I had landed on a very thin rug that covered hard, cement tile & hit on my nose, then barely skidded on my face, landing on the right side. I landed the exact same the 1st time (if nothing else my scoliosis is telling) except I landed on Chai bunny's hay pile. Same whiplash, but minus the road rash on my face. The nurses at my neuro office took one look at me & after dad told them I had been nauseous even with meds from the ER took me back after only one song on my iPod to give me the usual pain shot I normally get after. It contains a medicine that fights nausea, so of course that helped. I got straight in almost to the x-ray table, & my lovely dr was shocked at the looks of me. He explained that sometimes when I go into a flare, I fall like that-& that it is like lighting a match to a more ordinary flare & it just exploding. After the 1st time I tree fell we I'd the whole series of MRIs to again rule out MS. He gave me a shot right in the neck (ouch) & one in my lower spine. My face still looks clownishly awful & my teeth & bridge seem off, but everything is so swollen it's hardly surprising. Needless to say I'll put the dentist off for as long as possible. 

 

With us moving I'm more fearful than ever about finding a dr who will not only treat the pain, but have the knowledge & my trust to let them inject my spine with needles. (as well as talking about me living alone again...cos I was on the floor, blood everywhere & bled for a good 3-5 hours solid & on & off through the day...)

 

 

 

Bunny, shingles, & lungs

 Since I moved in here 5 years ago, I developed (probably due to an allergy) a horrible chronic, deep, body-wracking cough. Last night I felt like my upper back was hurting...& long story short, we realized my lungs were so congested & stopped up that simply put, my lungs hurt. I have an appt next Monday with an ENT, to figure out if there is more I can do to keep this cough at bay. I was treated for pneumonia in February, & it feels the same. Stupid lungs, breathing in fresh air! ;)

My shingles are back on my thigh, & they are so tiny but managing to get a pic today to confirm was a great accomplishment. Wanna see? 

 

 Sweet Chai bunny honestly, it's happened & has been witnessed, will thump when I'm asleep but my lungs/breathing are raspy. She is, we are convinced, magic. She has been on high alert as my coughing that (scares mom's cat downstairs) doesn't really scare her but keeps her hopping away as her giant ears are being split with my decibel raising coughing. She also will wake herself up thumping, will continue softly thumping as she makes sure whatever she was dreaming about is gone. That bunny keeps me smiling even in the absolute worst situations. I'd be lost without her. 

 

Chai bunny & Macy the cat

My parents have a lovely, unique, quirky cat named Macy...& Chai bunny likes her, but Macy is scared of Chai. Macy went into my...or Chai's room & Chai went growling & chasing her out. A few days ago they were both out in the hall & got nose to nose-so cute & peacefully. Today Macy came up when I let Chai out, & as soon as Macy saw Chai she ran under the bed, not realizing her long tail hanging out gave her away. Chai then kept looking at me, wondering where her friend went...