cabinfeveronline
THE FAMILY & GOVERNMENT DYSFUNCTIONAL (CLEAN)
Achairde All:
Well, I thought I'd take a minute to tell you how my life is going. On the Disabled and Familial sides, that is. I guess I could choose a more intellectual word but, to be honest, it just sucks, right down to the ground. There are new medical issues galore and honestly if ONE more doctor tells me there is something new that requires another test I am going to be REALLY close to going up in a water tower and settling the issue- for good. From October 1st through November 31st I have to see my Internist, my Head Injury Specialist, have an MRI and an x-ray on my newly dysfunctional left leg, my Seizure Specialist, my Rheumotologist, my Pain Management Specialist, my Gynecologist and have another Bone Marrow Biopsy. (There's nothing I LOVE more than having someone ram a needle up and into my spinal column WITHOUT ANESTHESIA. I always want to say, "Let's make this quick, shall we? I know where you live!) My Blood Pressure is so out of wack that they've ordered me a wrist Monitor that I am supposed to wear 24/7.
PLUS my Sleep Center and my ability to feel Hunger, which were damaged in the accident have quit responding to medication. I went 3 nights without sleeping and they increased my Trazedone. I got ONE nights sleep and back to three more without. The last night I took 3 Trazedone (which is an anti-depressant that they use for sleep problems and usually works for me because I refuse to take Narcotic Sleeping pills)and a Lunesta at 10pm. At 2:30am I took another Lunesta and I was still up at 8:30am to call my doctor and tell him things were not working out. He took me off the Trazedone and put me on Mirtazapine (another anti-depressant) so we'll see how that works. Next stop TGH if it doesn't.
As to eating, if I don't take my Nausea medication, Phenergan not only don't I feel hungry I CAN'T MAKE myself eat. Nifty little Diet Aide there. In fact the thought or smell of food and it's boot city. I have to keep drinking Sports drinks so I'll have something to boot or it gets really ugly.
The Florida Department of Children and Families has cut my Foodstamps to $10.00 because they aren't counting my Assistive Living Devices or the only medicine I can take for my Gran Mals which is not covered by the Government formulary. A total of $150.00 per month. Why? Because THEY DON'T HAVE A COMPUTER SCREEN TO ENTER THE INFORMATION ON. That's why I write non-fiction, you can't make this stuff up!
Now, I can and have dealt with these issues before, so what's got me working off my last nerve? Two of my sisters have informed me in the last two months, and I am quoting here,"I don't believe that you're Disabled. I've never believed it. You are a liar and Prescription Addict. The only reason you that you pretend that you're Homebound is because no one likes you!"
Sister 3 (Margo) actually told one of my physicians that, "She is so smart and knows so much about Medicine that she tells you the symptoms you want to hear to get the diagnosis she wants from you!" STG!!!
MBers will remember when I quit Medicinal Morphine COLD TURKEY after being on it for 5 years. I was having some very nasty symptoms and they decided I was having a drug reaction and wanted to turf me over to Psych. (I told them no. Basically because I was 'having a drug reaction' not an 'emotional issue'. Besides they never turfed any of the guys in my group under the same circumstances. WHY? Say it with me ladies - BECAUSE I AM A WOMAN!!! ) They said I had to go or go home. I chose Home and they wigged. It couldn't be done, I could die - as if that scares me or I would be back in 3 days. I went home sweat lodged myself along with Herbs that left an after-taste that would have made a Hospital meal seem like a Gourmet Event and I drank a minimum of 2 gallons of water a day. The first day I was Home I dumped an entire bottle of MS Contin into the toilet so there would be no temptation. Now, contrary to my sisters, my Chart says, "Patient Does not Appear to have Addiction Issues".
I guess my fierce intellect must have worked the same magic on all those MRIs, Xrays, Bone Marrow Biopsies, etc. to get them to show the appropriate damage, ya think!
Honest to Gods folks, I have been on Social Security Disability (NOT SSI) for 17 years. I get reviewed by the State every year and the SSA has reviewed me 5 times. Their last attempt was in 2000 when they sent me a list of their doctors to see. AFTER THE VERY FIRST ONE THEY CALLED ME AND SAID NEVER MIND! I see some of the best physicians in Florida and some in the Southeast! I will admit that I don't make friends easily but when I do- I KEEP them. As in six that I've known 35+ years. My problem in making friends is that my definition of friend goes way beyond normal love and loyalty as does theirs. The last new friend I made was 5 years ago and I am officiating at his wedding. Make that 2 years because his fiance is a dear friend as well.
My Brain Injury Association Counselor and I were going to have reverse intervention to educate my loving family but Dr. Weller (Head Injury Specialist) squashed that one last Monday when he told me that it would have to wait until my new medical problems were stabilized. Of course, he also thinks that it has nothing to do with me being disabled and everything to do with some Sibling Issue that can wait until a later date.
The other thing is that they want to go 'dumpster diving' through my Medical records and since they have never done a thing to help me (pick up a script, take me for regular doctors appointments or call to see how I am doing when we live in the same city) I won't let them. I have told them that they can question the people who do those things Dan's Mom Sandy and my Clann Brothair Avery since they are my Health Care Surrogates but so far they haven't bothered to ask them a thing.
You know I was really embarrassed when I started this. I do not speak of my private life easily but I really do feel better for getting it off my chest. Maybe it's because you folks are the people I love and trust as well. So, as a friend please tell me the truth, am I crazy or are they? And why would anyone be so hateful to someone who loves them?
Wednesday and it's back to working for Tim and taking on Governor Rounds. Y'all up for a little beat down on a few Politicians? Lord knows I am! 0;)
Keep the Faith!
Slan leat,
Elaine
AKA Cabin Fever
CABINFEVERONLINE
MOOD: LAST STRAW
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TAGS: daily life, disability, dcf services, families with disabled relatives
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