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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To be a real girl

Day 3 of the National Health Blog Post Month (NHBPM) is the topic 'I don't know about this, but I'd like to', & today for me that is without a doubt How to be/act/respond like a real, normal, functioning person. A little while back, mom & dad had over a family friend, & of course I told them I would come over the 20 steps through the back yard & spend some time with them. After the fact I came back to my little house wanting to crawl under my pile of clean clothes & never come out. I was deeply embarrassed, & it stung badly. The friend in no way probably meant this at all of course. Here's the humiliating details with names & dates changed for those involved. Well, all but me. O. o 

After staying up all night per my usual painsomnia, I had just gotten to sleep when my alarm went off. I got up, took my morphine which would mean a gap in my normal routine later but that's the cost of doing business in my world. Walking through the back door I saw the friend's face change. Eyebrows raised, shock registering before they could help themselves, & as I went to hug them it was if their body forgot how to hug. Acting as if I hadn't just hugged a marble statue i tried to smile & sat down. The poor friend then blurted out a comment/observation about my appearance, & let me just say it came out the exact opposite of the intended tone. Answering the question, it hit them how it sounded, & as dad started to laugh (as he & I had discussed this just a day or two before) & I was really glad to have an excuse to change the subject. It was truly about as low on the humility scale as i'd ever experienced, & i could feel tears coming, but I managed to hang on to my last bit of dignity & not cry. I also didn't want to make them feel uncomfortable-so i just sat down at the me-painful table. Physically sitting in normal chairs kills me, but I didn't want to make the situation more awkward, so I said nothing & sat as we had a small bite to eat. Getting more & more uncomfortable, I squirmed around like a child. The friend had been going through some tough times, & I had seen something that reminded me of their family & I had made a note to tell them-as I tried to get the words out the lack of sleep, pain becoming more painful, & fibro-fog clouding my brain left a fragment of a sentence hanging out of my mouth. I couldn't make any ordered words continue as they stared at me-totally lost I just stopped talking & thankfully mom's plentiful storytelling continued as I stuck food in my mouth to replace my garbled words. Ugh. A few more just odd/half insult sounding things were said, again-they didn't mean them but regardless-my body couldn't take anymore & my heart was already sagging under my dejected weight, so I released everyone & left, smiling as I said my fake high spirited goodbyes. Sinking into bed Chai bunny got up with me & positioned herself under my hand, waiting to be loved.

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Maybe miracle

After possibly the toughest 3 weeks on record, sometimes you catch a break. After realizing I'll be without meds (quite dangerous) for a two week period until seeing my new neurologist, I left a tearful message to my beloved former neuro, begging for help. Normally they can't give you certain medications unless you see them in person, & I knew my body couldn't handle that drive, much less leave Chai bunny. Yesterday the nurse called, & Dr. T agreed to give me a two week courtesy RX-& a family friend will pick it up & mail it to us ASAP. Until it gets here I'll be nervous, but the fact that people are helping restores my faith in mankind. Chai bunny is doing much better-she still has several mammary tumors, but hasn't has anymore blood in her urine, & is eating & drinking normally. We aren't out in the apt yet, but being close to my parents during this time is a great thing. Dad's been painting my apt-gothic amethyst & purple blanket-the first a silvery light purple & the second a deep eggplant purple-I love it! Mom has been finding all my treasures from my former life & some new ones :). Today I'm resting a bit easier.

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Star pills

Recently I started following a 365 photo idea for the day. I get so bored of pics of me, so I decided I could apply some of the ideas to my documenting pics. Today's was a set/4 of a kind. I just so happen to take 4 key pills for pain & muscle relief (along with a denizen of other vitamins, maintenance meds, etc). As I put them out they looked a bit like planets & moons, & I'm obsessed with anything solar related. I did some photo manipulating & dreaming of my pain pills orbiting my brain, trying to figure out what part of me needed them most. Green moon? Off you go to the left jaw...it's locking up & the TMJ is kicking in. Long oval white? Orbit & dissolve some over the left hip then go directly & release in the left sciatic nerve. Purple moon? Ok, top layer goes to the pinched nerve. 2nd layer? Neck ASAP. 3rd layer right side sciatic nerve, & stay through the 7th layer. Go then & rest on the spinal tap site. White meteor? Go full force & crash directly into the brain's pain center. As usual it is misfiring. If only I had a little space ship & I could go & fight myself inside my own head, & fix me with a light saber.

 

 

 

Yawwwwn

Ever since the spinal tap I've been exhausted. Way, way, way more than the normal me exhausted. I got shots in my pinched nerve & sciatic nerve Monday. I've been sleeping at least 19 hours a day since. Amazing how your body reacts to various things & I guess how my body is trying to protect me from myself. I slept all night on & off the recommended heating pad (usually it's ice down my pants but dr. T said heat this time around) & didn't take my last pain dose as I fell asleep. Waking up moments ago, all my mistakes arrive knocking at my door. Pill? Taken. Sat up & hunched over & stretching? Doing. Cold club soda out of the 2 liter? Gurgling & making that fun bubbly sound. Chai bunny is at my feet happily munching on a treat & very happy I'm awake. I sat up in bed gingerly yesterday & ended up indeed protecting the new shot sites yet forgot & twisted or wratched the spinal tap site. My face & lips are swollen from meds & the steroids in the shots, & my hair looks like really bad uncute bed hair. When I feel guilty that I can't work, help people, you know, be a productive human being, I try to remember days like this.

 

Bizarro day

My 'days' are strange-normally I sleep a lot during the day as my pain gets worse at night...& there's better tv on. ;) I was downstairs with my parents cat Macy-she's been really sick & so while they are gone I slept downstairs. It was great as I could prop my iPad up on the side table & was able to recline sideways so much easier than upstairs.

I started getting so tired & ended up sleeping half the night. Macy woke me up & around 5AM I went & checked the mail, which ridiculously enough exhausts me. After just a bit I fell back asleep. Today was the day my morphine was due, & with dad gone, he had our lovely friend Brenda pick the Rx up & bring to me-she is a huge reason in the cons part of moving. Even though I don't see her much we email & text & keep in touch through the parents. I knew she would be bringing the meds inside & I was trying to stay awake to see & thank her. Of course I was dead asleep, having the worst stress dreams. This is my painting of it-using a great new 50 cent stylus pen. I love Amazon!

So a few hours later Macy wakes me again as she too was dreaming-& she wakes herself up crying in the saddest way ever. She sounds like a haunted duck trying to bring her head up from under water. Maybe we were having the same dream? Completely out of it I see a text from Brenda, & I go to the kitchen & see my meds with the greatest thing ever! Donuts...Homer Simpson would be proud. One was a cream filled chocolate dipped one with bright blue icing dots, the next a four round tiny ones combined in a clover-like design that were raspberry filled. So good. & the best & last-a heart shaped donut with a blue icing smiley face! She told me later she thought that having sugar to make the medicine go down inspired her. She is by far the best 'babysitter' ever! Just without question. I'm now full of sugar & morphine, have almost forgotten about the awful stress dreams & painting. I try so hard to see & enjoy to the fullest the good surprises that pop up along my way. Thanks Brenda. :)

 

My last day of the #HAWMC month challenge

Today, this last day of making up the missed days from this month, we are to find a picture on Flickr & connect it to our health focus. I'm cheating a bit...but let me explain. Last night I went out to take a picture of the super moon. After getting back upstairs & into my room, I started to fall. I caught myself & only fell halfway-ish, but the little slip ended up leaving me bruised, my toes bent backwards, & all of the force of it jamming into my pinched nerve. It hurt, & I woke up so very sore & tired today. I laid down on the heating pad which helped, had my iPad on Pandora radio (a channel based on instrumental music), read on my kindle, & played Words with Friends. I was in pain but I was content. I had the perfect position to have healing heat, music, a great book, & a good game going where I was actually keeping up. I fell asleep. Hours go by & I wake up. My body & back feel like I've been in a car wreck. I can't manage to get up for an hour. I take my morphine & wait for it to work, & I reflect back on today, with my moment of contentment.

 

 

I'm humble enough to ask

I wake up from loosely based sleep, in which stress dreams plague me all night. And all of yesterday afternoon, & the night before. If I was on the battlefield with a sword in my hand, I'm pretty sure I'd lay down my sword & hold my head high. After waking & unable to shake off the impossible dreams, Ryan Adams 'Save Me' is running through my head. I listen to it then find an old friend, Aimee Mann's brilliant 'Save Me', from the stunning film Magnolia.

http://www.youtube.com/watch?v=urMq9XYzqC4&feature=youtube_gdata_player

I know a hero...white knight isn't going to ride in and fix me. The question remains though. I'm at the point I am humble & humiliated to know I can't save myself. Not this weekend, not this too early morning, not this day. The morphine, ice packs, heating pads, & soft Chai bunny ears nudging me for touch are doing nothing to lessen this overwhelming pain, & I'm not above asking for saving.

 

#HAWMC WEGO Health blog month, day 7.

Van Gogh-ed

If Vincent Van Gogh were to capture my pain, this is what I think it might look like.



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Location:Home

Ice & drugs

This was my yesterday






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Location:Bed

Pain & screaming

Sometimes when the medicine & ice packs have failed, I'm left with this







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Location:Bed