Updating my medical condition and prayer needs [Update at #'s 843,721,643,910]

I have faith that the implant is going to help me...when they took the trial away it was like taking candy from a baby...it was cruel! And waiting so long for the permanent one is cruel too. I am praying I am making the right decision in getting this done. It’s a huge step and one that I struggled with at first. I remember the few days I had the temporary unit in my spine, my legs didn’t hurt, I could lay on my sides and they didn’t hurt! My right hip still hurt like crazy and my back was horrible and my stomach hated me from the buzzing, it would make me sick when I ate! But when the tech messed with the unit before it was removed, she got the buzzing out of my tummy and all the way up my back to the middle of my back! It felt so good, I hated when they took it away!!

Went to the doctor on Wednesday...he asked me how long have I been having the increased pain...I told him that I had complained to his Nurse Practitioner for a few months now and that she has told me “He’s not going to give you anything stronger, period”. He said “I’ll have to have a talk with her, I don’t like to see you in the much pain”. He asked if the percocet was working at all anymore and I said not so much...even when I take 2 of them at once. He said “quit taking those, I’m going to give you dilaudid instead, and give you a numbing PATCH to put on your back...leave it on for 12 hours then replace it with another” He wants to see me in 2 weeks to make sure my pain is being manage. I started the dilaudid a few days ago (as soon as I got through the pharmacy drive through) and so far it only helps at night when I take 2 of them with my nerve medicine and my sleeping medicine. I get the idea that the Nurse Practicianer could be losing her job for not talking to the doctor when I said I was in pain and she said I wasn’t getting anything stronger. She didn’t even TALK to the doctor, and I told him she said that and he confirmed that he didn’t know!

Just found out one of the meds the doc wants me on is not covered by my insurance and it is $275 for a one month supply....no way I will be getting that one. :( The medicine the doc wanted me using is a lidocaine patch, 12 hours each patch then replace it. They say since my insurance won’t cover the patch, they will do the cream instead...but I can’t reach my back to rub a cream on and I’m not comfortable asking my teenage son to rub a cream on my nude back (I am really fat). I am on gabapentin for nerve pain. I’m on amitriptiline 50 mg to help me sleep. As for the new medicine...one 2 mg dilaudid doesn’t do it. I take my middle of the night dose at bedtime...so I take 2 at bedtime as well as taking the gabapentin and amitriptiline. I manage to sleep with that cocktail but the rest of the day is still stiff and sore. I’m hoping I can get the patches so I can get some relief! They talk it up like it’s a miracle drug. Maybe I can find out the name of the manufacturer and see if they can help me get them.

Also, my procedure to implant the spinal cord stimulator is set for January 27th...same day surgery, will be home that night. Really look forward to it, though I’m still scared about having the unit in my spine.

Bless you, T. I am so happy to read that the tumor will be gone soon.

I know that you hurt terribly, but please be careful when considering additional surgeries. I’d be tempted TODAY to go for another one myself if I thought it would help, LOL, but they won’t touch it after the last surgeon did his thing.

Lately, I’m disturbing my better half at night every time I let out a little shout. And that shout, I guarantee ya, is not caused by anything pleasant. He is on me now to have something done about my jaw bone, shoulders and back, and to get the mangled knees and my hips replaced. He insists that we not sleep apart which makes me feel guilty knowing that I’m waking him all night when he’s got to hit work early in the morning.

But, better days are ahead. And I wouldn’t know where to start with surgeries anyway since the wreckage is from head to toe. I’m too scared to have another surgeon make a cut on me. It always sounds good when you’re in terrible pain, doesn’t it? “Ah! We’ll fix ya right up!”

You’re kind of in the darned if you do and darned if you don’t position, aren’t you? Whatever you do, please keep me informed on what’s going on. You know what’s going on with me when there’s a long spell of silence, but I’ll be back around eventually.

Just be careful, and please keep posting, T. And keep that chin up. You’re a strong woman. The pain will sometimes decide that it wants to move out and cleave unto someone else for a while, even though it returns from time to time wanting to make nice and all. ;-)

Let me know if I can help you in any way, T. You know I mean that.

I keep you and yours in my prayers night and day.

HUGS,

Ah, you know what? The jaw issue I spoke of has nothing to do with the TN. I didn’t think about it because I’m so used to my own self and how ridiculous the situation is. There ARE surgeries for TN. I had the gamma knife radiation years ago to no avail. This prob, though, is a bone infection in the upper jaw. LOL. It’s been there since the really bad wreck years ago. It’s incurable, according to some. I don’t even know anymore. No two docs seem to agree on squat. I got it stirred up last year or the year before, can’t remember which, when I got talked into having a root canal done in that area. Should have left well enough alone. I was supposed to have gone on an IV of antibiotics for a year starting last year, but that didn’t happen for several reasons. I have to laugh, because … there’s no other option. That’s why I simply put my husband off when he’s wanting me to get something done. “Whatchoo want me to do? Seriously? Where do I start?”

Phht. It’s all good and everything will be fine after some sweet sleep, which I hope comes TODAY. (Please, Lord, please.)

Thank you so much for remembering me in your prayers while you’re in such a bad way, T. There’s no better gift than prayer. I really, really appreciate it.

Please forgive me if there are many errors. I’ve been without sleep several nights and I’m error prone. My eyes are frippin’ crossed and they feel like I’ve been in a boxing ring. My dog won’t even come ‘round me.

Lost my train of thought. About those back surgeries, T …

My father, God rest his sweet soul, was very tall. Born at some 14 and half pounds. I got my height from him. He suffered with back problems as long as I can remember and I reckon that my brother and I got some of that from him, too.

An orthopaedic surgeon once told me that the taller the person, the more room for error. I believe him.

Daddy had 2 back surgeries … or 3. I can’t quite remember. He always told me, “Never let them cut on you the first time, because they’ll never stop.”

My brother had one failed neck surgery before he was 40. “Never again.”

Remember that I was supposed to have 4 back surgeries within a matter of weeks? Back to back? Then another neurosurgeon said he could do the job in 3. That was for the lumbar probs. I never got to even the second surgery due to the leg paralysis from the first one.

A year after that surgery, I went to another neurosurgeon to have the other junk finally put in. He did the scans and mri and such, and came back and said, “No way, my lady. Nooo way. Just leave it be and try not to think of it.”

Am I better for the surgery? No.

My stomach rolls a little bit thinking about back surgery for anyone, T. Seems to me that the docs want to tell their patients that there’s no guarantee when they’re shuffling papers, talking under their breath and walking out the door.

Will you be better off? That’s the question. Only you can decide. It may be that it works for you and relieves your pain. I pray so, T. My goodness, do I. It’s just that when a person is in such pain for so long a time that any promise is easy to accept. And I understand. I know you want and need relief. I just wish for you to be very careful in your decisions. Have you had time to check out the surgeon’s record? Had I known that the one I had was shuffled to 6 or 7 or so different states in a short period of time, I probably would not have let him near me. I stupidly decided to check his record after I couldn’t walk.

Ah, truth be told, I may have done it anyway. Like you today, I just wanted relief and he seemed to be holding it in his hands. Hindsight and all that, it doesn’t matter anyway at this point. I lean on Him and try to keep going.

Right now, though, I’m going to go lean in some hot water for a while. If I don’t fall asleep I’m coming back to FR. I don’t figure I’m going to make it very far from here today anyway, so write me back if you’re up to it. If not, you know I understand.

All my best, sweet friend.

I feel for you with the lack of sleep...I’m having the same problems. I can’t sleep through the night because of the pain waking me up...so instead, I get a little bit at night, and then a little bit here and there during the day. The phone rings and I’m startled awake. I’ve been on an antibiotic for a UTI, Same UTI I’ve had since I went in for the stimulator implant. They had me on 3 antibiotics then, one of them given through the IV...the other 2 were pills. That was last Feb...and I still have the damn thing. I hate all this change in my meds trying to get me something that works. Yet they won’t fight for the better pain med that they knew I was going to need. They will eventually have to fight for it, either that or they will have to do the implanted pain pump.

I look forward to sleeping, I look forward to having a (mostly) pain free day, I just want to feel at peace, just for a little bit.

I remember you telling me about the infection...that’s CRAZY that you still suffer from that all this time after it set in! There HAS to be something they can do to make it go away! THAT will be in my prayers all night tonight and every time I pray. One of these days, we are going to have to exchange phone numbers so we can both take a break from typing and talk. :)

Hope you are enjoying your “lean into hot water”, I’m going to lean back with a bottle of spirits...I have ONE (1) bottle of fuzzy navel wine cooler...my last one I have been saving it for celebration of my disability being approved, but I’m going to drink it tonight. At this rate, I’m not sure when/if I’m ever going to get approved. :(

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