Tuesday, February 16, 2010

o/` "I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything" o/`

-- "Hurt" performed by Johnny Cash

So...it's real. When I went to the endocrinologist, she confirmed thirty pounds gone. Trouble is, we don't know why and when you don't know why the body has lost weight --- and lost so much in only a short time --- there's usually trouble somewhere. My A1C and serum levels came back elevated but that's because I've been on a heavy duty antibiotic for the cellulitis in my leg. Some of the other values are just slightly elevated but not enough to be of concern. She doesn't know why I can't eat and what is causing the persistent nausea and tiredness but if it continues, we'll add another medication or insulin to the mix to see if it helps.

Yay, another shot and another special delivery medication...not.

I also finally got the MRI done on my back. It ought to have been done when I first reported the injury back in 2005 but my primary care physician's office is lazy and incompetent. It took them this long, they claim, to find an open MRI which would accommodate me.

The news wasn't good: degenerative spine disease with spinal stenosis on L3 and L4 and arthritis. The most likely culprite is, again, the Ehlers-Danlos Syndrome because it attacks the connective tissues. The only good news about this is that if it's attacking the connective tissues in the back, it will not be doing the same to the lungs and heart. The disease progresses one way or the other, not both.

I was then referred to a pain specialist. The 'specialist' barely spoke English and was obviously more accustomed to working with worker's comp and drug addicts. My paperwork included information on opiates and methadone but nothing on methods of treatment for spinal disease. They didn't have the MRI films, even though I called my primary care physician's office twice to ensure that they would have the films.

He, of course, blamed the damage on my weight. This completely ignores the fact that I've weighed this much and more since I was in high school and that the back injury and subsequent loss of mobility is fairly recent. He recommended gastric bypass (NOT an option because of the Ehlers-Danlos Syndrome) and then told me in the same breath that referral to a spine surgeon was pointless as the incision would not heal (BS - my side healed fairly quickly and that was a 6x10x4 inch HOLE). So...I'm too fat for a spine surgeon but you're willing to risk splitting my organs open and rupturing them for a FAT surgery which is dangerous and unnecessary and contraindicated?

The only thing I left the office with was a new cynicism regarding Florida's health care system and a suggestion that I use the maximum prescribed dosage of the Vicodin...after I told him I didn't want any more drugs. No mention of physical therapy, no referral to counseling (Um...you just told me that I will shortly be unable to do even the simplest things for myself and I'll lose all bowel and bladder control and you DON'T think I might be just a tad suicidal?), no alternatives offered. The Vicodin, at maximum dosage, produces hallucinations, vomiting, and a dopey state in which I recognize no one and can do nothing. I told him all this and still got nowhere.

We're supposed to go back in two weeks, when he might have the MRI films. I"m going to tell him then that upping pain medications is a no-go and he'damned well find a better way to help me. If I'm going to have to live in this chair, I want taught HOW to do so without becoming dependent on everyone else. If it's at all possible I want to retain what little walking ability I have and get physical therapy to relieve the pain and maintain function.

No drugs. No gastric bypass.

As if that's not enough...one of my family members is seriously ill, so much so that last night we thought we were going to lose him. The doctor came into his hospital room, checked his temperature, pulse, and heart, and then told us that either the fever would go down in the night or he'd have passed away by morning. I spent the entire night holding him --- we took turns but he fussed a lot if I went very far. He's still with us but still gravely ill.

What is it with food and appetite in our family? He's got a bone infection which they can't operate on until he can eat solid food, sit and stand on his own, and is lucid. He needs to put on a bit more weight as well because he's been ill so long he's rail thin and very weak. I could not persuade him to eat breakfast or lunch today, not even a few sips of broth. They'll opt for force feeding him soon if he doesn't start improving. He's okay with that (that is, he understands the possible need) but of course would rather not. Poor boy!

I'm tired. I'd love to curl up in the sun somewhere with a good book and some crackers, maybe some cheese, and a good wine. I don't have time. There are people to be cared for and arrangements to be made.
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Member Comments About This Blog Post
  • GOGIRL62
    You are so strong...I admire you. I would think about getting a new doctor. You are in my prayers. Good luck to you.
    2983 days ago
    I will be praying for you kitty! Try to stay strong and motivated to live life. Those dr's don't always know what they are talking about, but you know what is right and the correct way they should treat you. If you have to, find a new dr who understands what is going on with you and will actually try to help you! I'm sending you my prayers right now! emoticon emoticon emoticon
    2983 days ago
    I admire your determination to take care of yourself. Does your insurance company select the Dr. you are to see. This one seems less that competent--a pill pusher. Keep up the determination and the will to live life on your terms.
    2983 days ago
    I'm not sure "I'm sorry" even begins to tell you how I feel about your having to go through so much. You are amazing in your resilliance and ability to keep pushing yourself.

    I really hope things get easier for you. You deserve a break more than anyone else I know. I hope you get one soon.
    2983 days ago
  • PAIGE367
    I'm so very sorry to hear all this. You are in my thoughts and prayers. I hope you find some sunshine soon.
    2983 days ago
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