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Thursday, February 9, 2012

New Hospital, Old Problems

I am so tired I can barely keep my eyes open.  I saw my pain doc yesterday and I’m going to try and cut back on my neurontin to see if my balance gets better.  I went to pick it up just now and the cost doubled for me this year.  My part D plan went bye bye so they threw me in another one which is less per month, but the per prescription went up on three  of them, and they don’t cover another. So it evened out.  I got rid of  most of my cable and did a few other things to cut costs and I’m STILL worse off then I was last year.  Sigh.  And I’m so tired all the time I can’t stand it.  I wake up a few times each night but fall right back to sleep most of the time.  But I’m exhausted all day. 
So my pain doctor okayed medical marijuana for me….he did so a few years ago and I never made it to a dispensary.  So I finally went a few weeks ago and they turned me away because it had expired.  It’s so weird; the names of the places are very discreetly placed on the outside, but unless you know what you are looking for, there is zero indication of what they are.  It’s so sad, that we treat medical marijuana the way we do.  Nothing takes away my pain like the green stuff and I’d like to do it legally….it maddens me that we are so closed minded about pain medication….well, if you’re reading this, you know.
Okay, I took a break – a day, actually.  I have been talking to my friend T who also has NF.  His is more advanced then mine, but when I met him five years ago (we are too far from each other for any more visits...pain keeps us from driving)  he was about where I am now, physically.  His tumors (most of them) are in and on his spinal cord.  He’s had several surgeries and has posts and bolts and whatever on his spine.  He is now pretty much coffined to the bed and his power chair.  My spinal tumors are mostly around the spine, but the spinal compression gives me symptoms much like his.   And of course, the tumors and the scarring.
He told me he was in the ER recently for his digestive issues and they gave him diladid IV and how that made the pain go away.  And I remembered when I had surgery and what it felt like to not be in pain.  I remembered crying because I WASN’T in pain, and what it felt like to be pain free.  When you cry because you’re feeling good, you know you’ve been in pain for a very long time.
Anyway, we talked for hours and he told me some horror stories about his stay in the hospital.  I’ve had horrible things happen to me in hospitals too  For my friend T, he had a nurse try and give him the wrong medication several times, regardless of what he told him.  He finally told him to scan his bracelet with the information, and of course, T was right and nurse was wrong.  The nurse, who was reading the information off a computer screen (in the room) had the name of the patient wrong….but before scanning T’s bracelet, just kept telling him he was “confused”.  Then he gave him all the meds he neglected to give him five hours prior (T had his light on for three hours and finally called the hospital from his room to get the nurse on the line).
The hospital itself is state of the art, brand new ad shiny as a newly minted penny…but he said the nurses were poorly trained and not responsive at all.  Maybe not being responsive is a good thing when you’re poorly trained.  It’s nerve racking being sick.  No way around it.  Sigh. (I’m doing a lot of that lately….actually it’s good for your airways to sigh).

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