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 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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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

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Inertia Creeps

It's amazing to feel the changes in my body developing without physically being able to see them. Like someone who knows she is pregnant but she isn't showing yet. There is a massive shift & growth going on yet it remains hidden. Chronic illnesses are much the same-the person can feel a flare coming on where their symptoms magnify. Sometimes the flare comes on gradually in the distance-you can see the storm clouds & hear thunder but it may take hours to actually rain. Sometimes a flare comes on very aggressively & sudden-like an attack that is fast & forceful. I often feel like I am being stalked by this illness-not knowing when or how tough the impact of attack will become. Will it stalk me like a white shark, taking it's time, or launch from the depths with a crippling hit.

 

 

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Day 21-madlibs #HAWMC WEGO

Right, after being so sick with 'fibro-flu', in which it feels like you have the flu...everything hurts, even your hair, skin, etc & at times have fever. I almost always post blogs daily, but the past 2 days I've been so sick not shaking was a monumental task. I'll make up the days missed in this month's challenge, but for today I started back on their schedule. It's a take on madlibs, where you fill in parts of speech & they generate a poem (mixed with EE Cummings!). At first I thought why the hell...this makes no sense-then, considering my lack of brain function it almost totally makes sense. Here it is, plus a pic of me under some dead dried roses. Enjoy! ;) ??!

Awful Rabbit's Awful Rabbit




Wildly i have never Sing, Stupidly beyond

any Sloth, your Snowflake have their Chronic:

in your most Superb Noodles are things which Hug me,

or which i cannot Hate because they are too Unemotionally




your Fantadtic look Greatly will unTalk me

though i have Slap myself as Picture,

you Clap always Film by Film myself as Brush Signal

(Skiping Sadly, Badly) her Hilarious Paste




or if your Cage be to Throw me, i and

my Bed will Write very Madly, Slowly,

as when the Phone of this Sloth Use

the Ipad Ugly everywhere Jumping;




nothing which we are to Hang in this Cd Type

the Typewriter of your Great Tv: whose Pretzel

Play me with the Word of its Sentence,

Hoping Igloo and Mitten with each Frolicking




(i do not Quit what it is about you that Kiss

and Pet; only something in me Love

the Boot of your Snowflake is Zen than all Brush)

Ladybug, not even the Clover, has such Beautiful Tofu




- Marnie & e.e. cummings

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Fish under roses

Dentist, dentist, dentist, goose

In trying to get in all things dentist before the bought insurance runs out, I've spent way too much time there lately...at least or my back & flaring fibro's sake. I've been too tired to eat or do much of anything. Have four fillings later today, then my rescheduled primary care doctor tomorrow. All I want to do is curl up again & stay far, far away from any medical establishment.

 

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.

 

 

 

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...)