I haven't slept, I try not to be a big puss, I have had 3 kids, c-sections, gallbladder, a hernia and 2 heart attacks. I have grandmall seizures. I also recently found out that I have probably been having 8 to 10 mini seizures daily for a very long time. I was told for years they were migraines. I have gone deaf, gone blind, passed out, curled up, unknowingly wet/soiled myself. I got days/weeks unable to use my left hand at all, or the biceps on both arms. When I get tired my leg drags, and I can't lift anything more than 2 or 3 lbs.
If I yawn, sneeze, cough, have a bm, laugh, scream or god forbid have the "big O" I usually go deaf for a little while but sometimes I am lucky enough to just get tunnel vision or go blind in 1 eye.
I have been hauled out of jobs on a stretcher and shoved in the back of more than 1 ambulance.
For 5 years the military had MRI and radiology reports stating my medical condition, however the military spent those 5 years telling me I had migraines. No offense to migraine sufferers but, " I fucking wish".
I don't talk about my medical issues on line, this is my one escape, but you know what. Today I encountered what can only be described as a troll. You know the ones that float around on blogs laying their opinions down, insulting the bloggers and readers all behind their infamous cover of "anonymous".
Well last week from no where I get a call from Ms BEAST. I was minding my own business posting jokes and tweeting with you sexy people, when I got the call out of the blue. Ms BEAST, wasted no time tearing into me. Questioning the fact a Doctor gave me 1 Valium 7 months ago for a 6 hour MRI that involved my brain, cervical, and entire spine, with and without contrast and a C.I.N.E. flow MRI study to measure my CSF fluid to my brain and any corking issues I have.
I was pretty baffled. I can't lay flat. That's been a fact for years. It increases the pressure in my head, and causes what is best described as sciatica pains in my back and legs, for bonus my arms go to sleep. So I don't lay down, I also don't sleep very well. So for a 6 hour MRI study to me it made perfect sense that someone broke military protocol and issued me more than a band aid and ibuprofen. To her it was a " red flag".
So much of a red flag she requested all my medical records and found out that when I had oral surgery last year, the Dentist gave me 6 loratab. Six. oral surgery. Dentist.
OBVIOUSLY this caused the beast to call me at home, never having met me to question me about this medical activity. Because I have been on ibuprofen, b12 and prenatal vitamins for years to help with all my problems because we know those are awesome meds.. 7 years. 7 years. I have been in pain.
If you have had an epidural or spinal tap then you might have been unfortunate enough to experience a "spinal headache" if so, this is my world, 24/7. Then thrown in drop attacks, passing out, loss of use of limbs, the bathroom stuff and what is my most embarrassing medical issue. The loss of words, the inability to place the proper word in a sentence, to not complete a thought. I had an ER doctor once ask my husband how drunk I was and how often it happened. HA I seriously wish.
Anyway Ms Beast caught me off guard and it hurt my feelings. I realize I should not allow someone I have never met who doesn't know crap about me or my problems. Like I explained to the Droid, if I had spent the last 7 years stoned to the bone, doped to the gills, and not trying to "tough it out" and "meditate" and do "mind over body" then maybe it wouldn't have shocked me so much. She tore me apart and I let her. My guard was down, I didn't expect it and she was firm and on the attack. I was left crushed.
So today I had another MRI, another lay still on your back, another here's some loud noise, in an enclosed space, while you are in pain and don't move moment. I think I have had around 15 or more MRI's by now. It's seems like I would get used to them. However since the big seizure 2 weeks ago, I am slightly on edge, and of course the Dr's have not put me on any seizure medication nor ordered any tests for it. This MRI was ordered 2 months ago because I couldn't lift my arms, which I can of course lift now so the MRI is pointless.
I thought maybe I had somehow offended Ms Beast. So I printed letters from 3 wonderful Brain Surgeons that my insurance told me I could never see because I am not a priority. I printed a copy of each letter I have written to the Doctors and my insurance since 2005 ( which is about 2 a year). The entire step by step medical history and progression of my disease, and in turn the step by step documentation of every single Doctor not doing a fucking thing.
After my BRrrrrr, Grrr, tick tick BANG bang, MRI. My head exploding, barely able to walk up right and hoping not to sound like an idiot I marched around a 5 story building with 6 wings to find the lady who had called me. I found her. Ms BEAST.
She wouldn't answer her phone for the secretary and they had to get the person in the office next to her to physically walk in and let her know she had someone waiting to see her for over and hour.
I was overly polite, I wanted to set things straight with Ms Beast and let her know the person behind the paperwork, behind her #'s. She proceeded to bring up my medication and point out that I take ibropfin, and imodium, obviously being prescribed those things are a HUGE freaking deal, and I am a bad person. After 30 minutes of lecture about how she could see every pill I have ever been given in my entire life and her statement that I had acetaminophen ( tylenol) prescribed last year. I felt as if I were a criminal. A horrible person, and I started to cry.
Quietly. I didn't make a noise, but I couldn't stop the tears from rolling down my cheeks when I spoke to her. I kept trying to hand her the letters from the brain surgeons, neurologist, and spine surgeons. She didn't care. The BEAST hated me before she had ever met me, and formed her opinion of me, yet I still can't figure out why.
Around 45 minutes in, I looked at her and asked, " why am I explaining or defending myself to you?" I have been failed by the military, the government, 12 doctors, and Tricare. I was lied to for 4 years, then ignored the last 3. YOU are part of the system that has failed me. That has made my 10 year old know nothing but a sick mother. YOU are part of the system that has let my disorder progress to the point my life is in danger. You are part of the system that told me I wasn't worth saving. I came in to give you the opportunity to be enlightened, to learn of my disorder and to meet me even though you attacked me.
For the next hour, she said to me 5 times. FIVE TIMES. That I needed to ask her to help me. That she didn't have to. That I needed to be nice or she wouldn't help me. She wouldn't literally make me say, " Please help me get medical care for my disability" Five times.
So there it is. It's out, I am fucked up. My brain is herniated out of my skull, my spine is jacked like a freaking janga game. If you search either of my blogs or my facebook and find a reference to "seeing a wizard" or "the wizard of oz" that is me being vague about my going to neurosurgeons. I am like the Scarecrow looking for the Wizard. Only I have enough already, possibly too much.
My only saving grace is not too many people read this blog, it's my "secondary". blog. I had to vent. I am disgusted with myself. I have had only 2 things to cling to for the 7 years to help me get through.
1) I love my children so much I can't check out, no matter how much pain, embarassment and struggle I go through I have to survive, Sam I am maybe 22, but the Prince is only 10. I can't leave yet. I have to win.
2) I am a tough bitch, I am a solver, and my main mantra, "no one has ever died from pain".
I'm right, you don't die from pain, you pass out first, sometimes you just vomit. I usually do both at least once a day, but I don't die. Because of #1 and #2.
Fuck you pain. You can't fake what I have, it appears clearly on MRI's and even a dork who doesn't know shit about anatomy can see it. Over the last 7 years I have asked several doctors if maybe I needed mental help, they all said no, I was fine, in fact better than fine, a role model or poster child on how to overcome chronic illness and pain.
People who do know the complete story ask how can I post jokes, be funny, and act like nothing is wrong. I can't hold anger. I would be angry if this was a child., and lots of children have this. So I am grateful, my children are healthy. I'm a grown up, with big girl panties I slip on every day to battle this shit. But the BEAST wore me down, insulting me, questioning my integrity and then making me do what felt like begging 5 times. I left feeling defeated and wondered why I thought someone like that just needed to meet me to understand.
The BEAST pointed out she had 25 years experience as a nurse, and that, she was a specialty nurse, called a case manager, and she could make things happen.
I wont let this woman do this to me again, I am disappointed in myself for allowing it, I would have drop kicked a bitch if she spoke like that about my child or husband, but when it's me, when I am the patient, I instantly become the little girl who is in trouble, or didn't "deserve" new clothes for school, an adult version the child I was, unhappy, unwanted, and unworthy. Did she channel my dead grandmother, who told stories of how the leather belts didn't compare to the razor straps, and how I ruined my poor mothers life because she married a " southern man and produced me".
I'm home now, and I logged into this little hide away blog and I am unloading with both barrels, because I have to. I have to make a commitment to not allow anyone to treat me like shit. EVER. The best commitment I can come up with, is to promise it here. I can look back and remember how I felt, and if anyone else is feeling like this, I am so sorry.
In summation, I totally hope a freaking acme safe does not fall directly on the head of Ms Beast.
There I feel better.
* disclaimer- 1 Peach was injured in the making of this post. *