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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Gutting realizations

For those of us cursed & sick, we realize the distance of family & friends very quickly. Today I find someone who I helped in past years (before kids & marriage came into play-again) to the safety & detriment of my myself-including hundreds of dollars-that some people have the unique gift of 'growing up', having family, & getting the leisure of forgetting those along the way-kids, marriage, etc that people like me don't have. It's a smashing of heart realization that many, even family, leave you behind to protect their new family. I get it, but I don't. I didn't chose this-I'd give anything to be behind that white picket fence, but that's not in the cards for someone like me. So I suffer-through this move, weeks without drs or help, & face the pain alone, while others home life sleeps in peace & without chance. They slumber & dream while I lie awake, screaming to no one in particular in agonizing pain. What a difference 6 years makes.

 

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2 days & Zoe

It's 2 days until we drive away from this house. It never felt like home except for my parents being here, but nowhere else did either. The Czech Republic felt more like home than here-I at least met people & made fantastic friends, went out, etc.

 

Zoe cat died Feb. 1st, 2011 & I still haven't been in the backyard to see her. With the emotional state I'm in, how on earth-this solar system will I say goodbye?

 

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For a fool

After basically floating through ages 8-26 due to death of my brother, anorexia, endometriosis, etc just to mention a few things, I finally woke up for lack of a better phrase at age 27. I was like an 8 year old emotionally in a 27 year old body. That served me well in that everything-each sensation seemed so amazing. I was such a child but honestly so. On the downside I was & still can be so trusting. Things like dating, etc takes on an entirely new meaning when you should know better but you honestly don't because you missed the part where getting equipped was taught. Now that doesn't matter as dating isn't even a blip on some far off telescope. My last date, kiss, etc was like 8 years ago, & I don't see that changing. That's ok, as just getting through a day is enough mental head games on its own. However, when the knowledge base of what friends are comes into play, as a emotionally stunted teenager in a 41 year old form, I expect different things. I'm more cynical now that I'm 13, but still really get my feelings hurt like a 7 year old would. My mental formation grew up much too fast & yet was stunted so much. Add to the mix the chronic pain nightmare & you really do learn who your friends are. As soon as I got diagnosed with fibro, my grad school really good friend, girl G, well, she thought I was trying to get out of work. Needless to say that broke my heart & I hear she's married & maybe has a kid. Crazy as I was with her the night she met her husband. As my mom says 'consider the source' & I do but wow it is very gut inducing painwise. People like me (sickies) go through things like this, but I think most of us have that one person who really break our hearts. Like a detective who has that one case that still keeps them up at night, & even though they know they will never get their answers, they hold out hope. Listening last night to the just delightful band The Shins, I heard off their new album a song For A Fool. For me it took me to the heart of that friend who you know is gone-but still you hope yet know you were a fool, albeit innocently, for believing their words. Their rescue plan. Their liquid courage laced lies. I'm been wracking my emotions for 6 years about this friend, & hearing that song I want to say that no longer will I listen or hold out any hope that they will someday get real & deliver the friendship expected or deserved. I really hope this time it sticks.

 

Modern Leper-Day 11-Theme Song (WEGO #HAWMC)

Today I'm to imagine if my blog had a theme song...words, music style, etc. After the day I have had I can barely sit up, much less write a song, but I have a song so near & dear to me that anything less wouldn't be fair. I had gotten a free sampler & at one of my many neuro apps, like 3 years ago, in the waiting room came across this song. It stunned me? It had lyrics like 'I am I'll, but I'm not dead, although I don't know which of those I'd prefer'. It was raw. Honest. Yet set to the happiest Scottish barn dance tune (not that I've been, but you get me) & had awesome cuss words that emphasized my wanting to fight in an honest manner, & I don't know of many in this illness(es) who haven't used bad language-it's a savage disease. I don't give it the upper road courtesies of not sinking to it's scheming manner.

Today I had my left sciatic nerve shot full. Was told I needed a spinal tap next month, May 6th, to again rule out MS. Didn't get a pain shot but instead out of the blue got pulled into a physical therapy meeting. Those two women knew more about fibro than most doctors. They had to push in on a spot as we talked about the possible lymphedema in my leg, & it felt like they had electrified my sciatic nerve with a taser. They feel my sciatic nerve is so bad it could be breaking blood vessels sideways from swelling hip to ankle & not necessarily lymphedema. They helped but holy shit, where she pushed in on my hip feels like I got hit with a sledgehammer. I was numb yet hurting so badly, & on the way home, once again, without discussing it with me I questioned dad on something & he had to admit that they found a house a few weeks ago, put an offer, got it, & close on it just days after my spinal tap. When asked about doctors? 'none yet that can help with the pain medication treatment plan, but 4 possibles to watch your spinal implant' if I get it. Wait, so he thinks fibro is boiled down to just my back? Are you freaking kidding me? And they promised we would not move until a doctor could care for me like my 3 doctors here do. Guess that's out. I turned on the latest Ryan Adams cd, stared out the window, & haven't seen them since.

 

The Modern Leper, by Frightened Rabbit

A cripple walks amongst you
All you tired human beings
He's got all the things a cripple has
Not working arms and legs
And vital parts fall from his system
And dissolve in Scottish rain
Vitally he doesn't miss them
He's too fucked up to care
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
On his last leg
Well, I crippled your heart a hundred times
And still can't work out why
You see, I've got this disease I can't shake
And I'm just rattling through life
Well, this is how we do things now
Yeah, this is how the modern stay scared
So I cut out all the good stuff
Yeah, I cut off my foot to spite my leg
Well, is that you in front of me?
Coming back for even more of exactly the same
You must be a masochist to love a modern leper
On his last leg
Well, I am ill
But I'm not dead
And I don't know which of those I prefer
Because that limb which I have lost
Well, it was the only thing holding me up
Holding me up
Well, I'm lying on the ground now
Walking through the only door
Well, I have lost my eyesight
Like I said I would
But I still know
And that is you in front of me
And you are back for even more of exactly the same
Well, are you a masochist to love a modern leper
On his last leg
And you are not ill
And I'm not dead
Doesn't that make us the perfect pair?
Just you and me
We'll start again
And you can tell me all about what you did today
What you did today