And so this is Thanksgiving

Something has broken. Something snapped-the straw has broken the camel's back. Hope has disappeared & the bleakest, blackest darkness is here.

I was blogging daily for WEGO & the November NHBPM (national health blog post month) & was into day 5-10 when the flare came on, & for the first time I understood what 'losing consciousness/feeling' meant. The level of pain was so bad it simply wore me out & I couldn't stay awake. By no means was it peaceful slumber, rather sharply stunted sleep between fits of electric nerve endings firing off at insane intervals. Nevertheless, I stopped blogging. I stopped being able to do much of anything. Going to the bathroom was work. Making food was a joke. Something changed when the last weather related change came, & I came undone.

A Czech friend had asked & sent her PHD paper for me to look at-having been so eager to help I now haven't even opened it. A friend L noticed I had stopped communicating & sent several gorgeous pictures of fall leaves-I only saw one, & for me it represented how I felt. Instead of the beautiful colored leaf it was in black & white with almost silver overtones. He too lives somehow outside yet exists inside life. He understands the suffocating loneliness. He sees things skewed & different than the normal family bound individual.

Having not seen my new neurologist lately, I saw him Monday. My old dr I saw every month & sometimes every 2 weeks. Deep down I knew he wasn't the one-he wasn't treating me at all, rather seeing me every 2-3 months & on HIS timetable just giving me morphine. He left every appt abruptly, never returning yet leaving me alone in the room for 30 mins before his staff found me & gave me a random appt. so after barely showering, my clothes feeling so uncomfortable & seeing in the light of day my hair almost half grey which stunned me I went & waited. He came in, asked me about side effects-I think he had nothing to say yet felt he needed to & just asked a random question. I mentioned my face-I have periods where my face has the bright red butterfly rash that appears & lasts for days much like the Lupus butterfly rash. I mentioned it as my face was so hot & so red & I felt surely he would notice. Nope. He asked if I had Lupus. What? You, my neurologist, you're asking if I have lupus? Stunned I answer no, I was tested for that years ago, & explain that fibromyalgia often produces this same rash much like lupus. I explain that to said neurologist. Dad had come back into the room at that time & was just waiting with me, as he hen just stood up, said he would be back, & after speaking/listening to me for maybe 3 minutes leaves us, & his nurse comes 30 minutes later with half of my prescriptions & an appt to see him in 3 months. Right then was when this thing broke. I had gone for 2 months without seeing him & after that pitiful excuse of a visit he now doesn't 'need' to see me for 3 months? The nurse/staff says my morphine isn't due for a few days so I can't get the RX now. Let me explain-that kind of RX comes with a special 'do not fill until this date' kind of safety thing. My old dr gave me my RX a week or 2 before trusting & knowing I wouldn't & COULDN'T fill it early. As we get in the car & look up the dates we see I will be out of morphine this weekend, & as we know their office is closing Wednesday for the holiday dad calls & asks shall we pick it up then? He is told no, sorry, you will have to wait & call/pick it up the following Monday. Dad pleads, saying 'but she will be dying by then...' only to be told sorry & be hung up on. Obviously I will never go back to him, but what now? I have seen so many drs. I have been sent away by so many as a challenging case. I can't stay on this merry-go-round of piecemeal health care any longer. For the first time honestly my hope in anything is gone. I have nothing left. With no family or kids of my own I feel so alone. So lost. My old best friend was in Colombia & a girl/dalliance kept saying to him 'just be, just be!' & we always laughed about it...but when literally just being leaves you exhausted, without help or any hope to speak of, what then?

 

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Day 10-laughing out LOUD

So this is a LOL post-which I often forget means not just laughing but laughing out loud. I laugh a lot but I don't laugh out loud, loudly...all that often. When you're in pain all the freaking time even when I laugh I don't out loud all that often-from exhaustion & pain. The last time I really laughed was about a week & a half ago when my darling nephew & brother were over. We were outside & he was playing in the potted plants, & mom was showing him a (planted) flower, & he excitedly plucked out the flower with a little mound of dirt & roots with it-his little one year old face was so pleased, & mom & I lost it. He then started laughing as we were laughing & it just got funnier. He is so precious.

Chai bunny keeps me laughing-she is 99% personality & 1% sleep. No, she even has personality when sleeping. She wakes herself up thumping, then is alarmed & keeps thumping. Last night she moved one of the 2 bunny slippers (Sugar) to her food & later went over to eat-instead of moving Sugar she stood on the back foot part-leaned around & ate reaching her furry head around & sideways to reach the plate. Earlier we had gotten dad to help wash all my bedding & halfway through she jumped up on the bottom sheet & licked away. I finally had to just sit & wait for her to finish. She is THE joy in my life.

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Day 9-Care Package

I have received some very sweet, fantastic care packages in the past few years. They mean so much! Here are a few things I would include if I had the resources & means to send packages to all my chronically sick friends.

1-some fun foods & candy-many of us have to eat something with medicines, & cooking something at times is really impossible, so having at hand some cashews, candy, great buttery crackers, holiday cookies, soup, or a great loaf of bakery bread is a godsend.

2-really good lotions & lip balms. Fragrance free or something healing like lavender & chamomile is something I love. A fun selection of lip balms is always appreciated, & something like a long lasting candle is a very sweet touch.

3-an amazingly soft throw/blanket. Temperatures really affect many of us, & having a great go-to blanket & heating pad is a comforting thing.

4-super soft socks & slippers. Even though it doesn't take pain away having big fat fluffy socks can help the cozy factor tremendously.

5-a super digital library of tv series, movies, & books. My life would be far worse without Netflix streaming, digital books (holding a book open is very tough), & tv. Refocusing my attention is crucial for getting through the day.

6-a body pillow. I have 4 pillows behind me & 2 under me to create a recliner type sleeping situation. Lying flat isn't an option.

7-coupons for services-like a catering service for a birthday or something, a handyman to fix things you just aren't able to do-even a home nurse visit would be an amazing thing!

8-an honest, loving letter. Saying 'I don't have any words really but I love you' is so appreciated. We know you have no magic answers-we gave up on those long ago, but an I love you/I care so much is the best thing.

A very soft hug. Many of us have NO human touch apart from our doctors. Think about that-no human touch, hugs, etc for months at a time. It is like starving really. Even a touch on the hand brings me to happy tears. Illnesses are very lonely, & a chronic lengthy one? I cannot put it into,words.

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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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Day 7-the waiting room worth waiting for

As a chronic illness/pain patient there are so many different things that change a simple couple of hours in a waiting room can go from a normal experience to a painful, flare-inducing, long lasting effects kind of scenario. So many of us have things we won't leave home without to make the torturous wait a bit easier-for me, noise reducing earbuds & my iPod are number 1-& I even would bring a light blanket or a sweater in the summer as hours under the A/C vent are enough to leave me wanting to wait outside on the hundred degree curb. As much as we prepare, there are things far outside our control-& here's where day 7's prompt comes in-redesign a doctor's office/waiting room. Other than the doctor coming to us, here's a few things I would change.

1-seating. Chairs of all kinds, primarily ones without sides or room enough to be able to pull your legs up & sit lotus style/Indian style. I cannot tell you what fresh hell awaits when I sit for more than about 3 minutes with my legs extended down to the floor. Lightening bolts through my sciatic nerves from my back down through my toes & back up-so that is always the happiest sight for me-big, wide, fat chairs.

2-a no smell zone. Strong smells (pleasant ones even) can send a brain's pain center into overdrive-so somehow magically erasing anything from perfume/hand lotions/smoke off of people as they come in would be fantastic. My last office before moving had people smoking outside which was fine-but as they walked in the breeze would gust the smell inside & patients started to crumble.

3-Other than lovely, no-fragrance candles, a soft lighting scheme would be great. Nice lamp light is so much better than harsh, overhead lighting. My last neurologist could come in & see how the lights bothered me & would automatically dim the lights-heaven. Obviously in a waiting room you can't really do that-but lamps would cut out so much glare. A girl can dream!

4-little things, like a basket of blankets & throws to updated magazines & books. Many of us have to be driven there, & I always worry about my dad-did he bring a book? Are there fun magazines for him to read? Could he just stretch out & take a nap? Our caregiver's comfort is also a factor-& having a huge selection of magazines would be great. Even a wifi hotspot, water, or coffee corner would be great.

 

 

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#Listof3 Day 5-national health blog post month

 

Today is a very difficult day to write, as I'm going through a flare-meaning every pain is felt more, I am so exhausted I cannot keep my eyes open for days at a time, & it seems even my emotions hurt. As I sit here crying, I think of a list of 3 things I'm thankful for/inspired by/excited about. For me-in this dark, cold moment, I am inspired by these 3 things.

1-my darling, sweet, amazing house rabbit-Chai bunny. Her boundless joy for life inspires me to keep going. To raise my hand to continue petting her even though my hand is cramping & tells me I'll pay for overdoing it later. That even though she herself will cease to breathe, her happy joy will live on.

2-our newly discovered backyard turtle, who we named Pepper...life must seem so frustratingly slow at times. Even though he knows nothing else, surely he must notice how fast the birds in the yard hop around, rise up & fly 6 feet over, or swoop down to grab bread crumbs I leave out. He inspires me to accept myself-even when it seems everyone around me can fly so far & so very fast.

3-it sounds crazy but my paints inside the apps that I digitally paint with. Even though they look so beautiful in the little color wheel that gives so many choices-when I spread those watercolors out, it never ceases to surprise me a bit on how gorgeous they look even watered down. One stroke of color-even a muddy tone-conveys so much-even the darkest ones. I'm inspired just in how the colors themselves change-develop-& blossom on my digital screen. When you put one next to another how they either harmonize, or bring out the true colors when paired next to their complementary color, or even bring out the beautiful shades in the lighter colors on either side. We all play a part even if it is to support the other.

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What's your bag? Day 4

Since I'm at home all the time, my bag/purse is the space in & around my purse on my bed. I'm not specifically bed-bound, but since having anything-like the arms of chairs-touch me causes pain, the most comfortable place is in bed sitting up. That way I have a stack on pillows behind me if I do need really soft support & pillows under my knees for when I am sleeping-& they double as a make-shift tabletop, iPad holder, place setting, etc. I am addicted to lip balm, such as Burt's Bees, the Merry Hempsters, or just good old Chap Stick. A friend of mine sent me my newest obsession a year or so ago, & it now serves as my all purpose balm. It's called Smith's Rosebud Salve-it comes in an adorable tin & I use it countless times daily as hand lotion, lip balm, as a skin softening agent, the uses go on. People with fibromyalgia often have a broken pain center...for example my brain can take a fan blowing on me as a painful stimulus-or a smell like cleaning solution as an assault. This Rosebud stuff has a very slight floral fragrance but so light it doesn't set off the pain alarm in my head. Any kind of extrasensory influence can easily transform as pain, & so certain things just make life easier. At the top of my list is noise canceling earbuds/phones. When I'm in a waiting room everything hurts, so having my iPod & earphones are crucial. Even just here our backyard touches 4 other yards, so lawn mowers, weed eaters (the devil's handiwork that is!), & other lawn care things drive me nuts, so often if it gets to a certain point I put the earbuds in & tune out anything but the music to refocus. In my bag medicine goes without saying, & I keep a nasal/allergy/sinus spray since those systems work overtime fairly often. Hair clips & ponytail holders are a must, as well as tissues & a mirror. I don't wear makeup (sadly) anymore, but I tend to always need a mirror for bunny fur in my eyes. Chai bunny's mark is never far away :)

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