Long time no see!

Sorry it's been about 8 months since I last updated.
Life has been pretty mundane and rudimentary that I just forget to come here and post.

However, with such a long absence, there is quite a bit to update as I have had several appointments and changes.

At the end of February, My depression was getting to a point that I had to do something. I was not seeing a single bit of evidence that my hand was making any progress and I feared that if I didn't do something to allow me to play something again, I might kill myself.

So I sent my saxophone to be converted to a one-handed mechanism. it's a process that takes about a year and costs as much as a decent American sedan, but I had to do it. I'm not giving up on my hand, but I need to be able to play something until my hand functions and I can return to playing a normal instrument again. or *if* my hand never functions at a level that I can return to playing, I need to be able to play in some way and have a backup plan.

The tech that is modifying my instrument helped design the system he is putting on it,.. He received my sax on arch 2nd, but it was mid April before he was able to start work on it.

I have to say that since sending my instrument off, my moods have been MUCH better, and the suicidal thoughts have gone completely away... and as an added bonus, I'm starting to see some progress in my hand!!! (Huzzah!)

Around April or May, I stopped using my walking stick completely. I now walk with no assistance at all. In May, we found out that Medicaid hadn't been paying my therapy bills for months and we had about a $5,000 tab. the director of the therapy place I've been going to since January, decided to drop my write off my bill and I'm now paying my therapy sessions a la carte, only at a greatly reduced fee that I can actually afford. Because my walking has improved so much , my physical therapist decided that since I'm having to pay for my therapy myself, we could take a hiatus from PT unless I decided I needed a refresher.


Now as far as doctor's appointments.
In April, I had another MRI. Everything was still clear, so my next scan and visit with my oncologist is in December.. Every visit, he extends the length of time between scans... at first it was three months, then he moved it to six months, and nw 8 months. That's a good sign. :-)


I've had a few visits with Dr. C. Viral load is still "undetectable" and CD4 has been around 150 the last couple of labs. next visit is in October. If I can get it up to 200 for a couple of months or so, I'll be able to drop the last antibiotic. I don't mind taking the Bactrim, as it doesn't give me any side effects

I just hadanother round of Botox about two weeks ago. My doctor has been concentrating most of the injections on my arm and hand, since that is still where the tone is the worst. This time one of her doctors in residence did the injections while she supervised. There was one muscle on my arm that they had a hell of a time finding, and they had to stick me about four or five times in the same general area before being able to inject. a couple of days later I noticed one nasty looking bruise in that spot.

Thankfully, even though the procedure took longer than usual, the pain level was about the same as I'm used to... It's still nothing as painful as the first time I had Botox when I was in the hospital. But as I tell everyone, it's still not something I enjoy having to go through every three or four months.

I recently reconnected with my old high school band directors on Facebook.. it's been nice talking to my head director again. I had communicated with him via e-mail a couple of times after coming home from the hospital and getting situated, but the e-mails stopped after two or the exchanges. I had found my assistant director a few weeks ago and when he confirmed my friend request, I saw he was friends with my head director, so I sent him a request too. Turned out, he had just recently joined up on FB a week or two prior, which was why I hadn't found him on there before. :-)

I'm sure there's more.. but I will save that for a post in a few days.

Now for the double post: I apoligize for the negativity of this portion, but it's been on my mind lately.

I don't know how much longer I can take of this...
I can live with walking the way I walk now for the rest of my life. I don't fall and only occasionally need a hand to get up from a low chair or if I've been sitting for a long time
I can live with having help cutting my steak for as rarely as I eat food that requires being cut. And I can live with having to lean my walking stick against the wall to open a door with a twist handle. I can even live without playing flute for the rest of my life(it was always my weakest instrument any way and I was never all that good). But I don't think I can live with not being able to play clarinet/saxophone for the rest of my life. (*especially* clarinet) for eighteen years of my life, clarinet/music was *ALL* I knew. That's nearly two thirds of my life. Sometimes I wish the stroke had just killed me July 28, 2008 rather than make me go through the pain of not being able to play any more. A couple of nights ago I had one of my moments Where I had a dream about playing, even poorly, and I was happy for a moment in the dream world. But when I awoke to my usual sorrow of realizing it was just a dream and my hand was still s useless mass of flesh and bones, I started sobbing uncontrollably.. I had to get up and go to the coputer to finish sobbing soI wouldn't wake B. I tried to move my hand for a while cursing it and beating it when it wouldn't do crap for me; sobbing further.
I suppose I could learn to live without playing saxophone considering I was nothing compared to real saxophonists. I had two former students that are both very talented musicians and saxophone players. But looking at my track record as a teacher, I think I just got lucky with having two gifted children so closely spaced and from the same school that I let myself be convinced I was finally a decent teacher, and thought it ironic that my best students were not playing the instrument I spent so much of my life trying to perfect my art on. When really I can take no credit for the success these two young players have had; They would have been just as successful with any teacher.

Today is probably going to be a double post. first an update... My appointment with Dr. C was back on the 7th of January... The stupid lab didn't run my CD4 test, so my doc wouldn't see me until thy got the rest of the results in. so I'm still undetectable and my CD4 is up another nine points to 101.

I'm still on the Bactrim until i get above 200 and stay there for a couple of months or so. My rehab doc gave me a prescription for Nortiptyline a while back because the Ambien wasn't doing any good. All it did was make me a zombie where I couldn't even walk to the bedroom but once I was asleep the effects didn't help me sleep any longer than without it. The new stuff actually seems to help.. I still wake a up alot at night to turn over, but I'm more easily able to go back to sleep. From reading abotu the drug, it sounds like it is also used to treat bed-wetting. so I guess because of that it dries me out some and I don't usually have to get up to pee at night which I think also contributs to me being able to go back to sleep easier. We've switched to yet another therapy place. My time at the last place was up and When I was at the rehab doc for my last round of Botox in December, she gave us a referral to this other place up near us just around the corner from the last place... As usual, the OT doesn't seem to really know what to do with me... but she's not a sadistic bitch like the OT at the last place... I still miss the god part time therapist from the last place. She was the only person in the last year and a half to give me any glimmer of hope that I would be able to use my hand again. The only problem is that the scheduling lady has it in her head the my insurance is going to stop covering two therapy sessions on the same day starting in February.. so that rather than us going two days a week and having OT and PT back-to=back, We'll have to come four days a week doing one each day! The insurance company says that's not true, but the scheduling lady is insistent on it, claiming to have a letter from the insurance stating as such, though, looking at the letter it sounds more like there was a problem with how the billing people have been coding the therapies when billing insurance. Hopefully this will get straightened out before February. B can't take off work four mornings a week to take me to therapy... he'd have to start working both Saturday AND Sunday to make up missing all that work.

Progress

My visit with Dr C went well today.. My Viral load is still undetectable and my CD4 had a significant increase of 21, from 71 to 92, much better than the 2 point increase from 69 to 71 last time. still not the highest jump I've had, but I was worried after the last visit that it was slowning down. I had a flu and tetanus shots. and will get a shot for ze flu-de-swine when it becomes available. I'm also off the Azithromycin since my CD4 is stronger. I'm still on the Bactrim, which is fine because it doesn't do anything to me unlike the Azithromycin which can give npredisctable diarrhea. so I'm VERY glad to be off the "poo pill"

next visit in three months again.

a follower!

I noticed a while back that I have someone following my blog. I thought I could send them a message but I on't seem to be able to. if you're the follower, would you e-mail me? I want to know more about you and how you came across my blog and why you decided to follow me

use this address: kasparguy@gmail.com
This is the address I use for spam so I don't check it often, but I will check it when I'm expecting/hping for e-mail.

BLAH!

Can't sleep as usual.. Have another MRI early in the morning. get to have another IV line put in my arm just so they can draw a tiny blood sample to see that my kidneys are in fact there and working and then inject the conttrast part way through the scan.. :-(Then later this week ( probably Wednesday or Thursday I have to go get my blood drawn for my next set of labs for my appointment with Dr. C next week. Hardly ever having to get stuck lately makes getting stuc hurt alot more.. When I was having blood drawn several times a week, a stick here andthere was nothing. but geez, when they stuck the IV for my last MRI I thought my arm was going to explode from the pain. I don't know why IVs have to hurt so much more than just a needle to draw blood.
Friday morning, also fairly early is my third round of Botox. (several more injections in my bad arminstead of my good arm)
I shold stop calling it my "bad" arm. B and one of my therapists et mad at me every time I call it that.. but that's what it is.. my good arm works and my bad arm doesn't... you don't call a dead light bulb on a string of Christmas lights a bulb that "just needs to be woken up." It's the "bad bulb"
B and I are increasingly dissatisfied with the place we moved to for my therapy.. the OT really doesn't seem to kno what she's doing or how to handle my case. But we really don't know where else to go.. The therapists at the old place seem to know nothing of other therapy places... or we think they pretend not to know anything to protect business. It's like a mechanic isn't going to turn to a customer and say, " Why don'tyou take your car to So-and-so.. he's a good mechanic."

I'm giving up on the idea of teaching from home... It's just impossible to get parents to drive more than the five minutes to school for lessons. B only has one student that's coming to thr house and even they want lessons t the school if he ends up teaching any there.
I'm afraid I'm going to have to break down and try teaching at the school for a couple of weeks or so and see if I can even handle it.

Thtat's enough bitching and moaning for this morning. I suppose I shall try to go back to bed since we have to leave for my MRI in about 3 hours.

fears

My next appointment with Dr. C isn't for neary a month, but I've had some things in my life come up that I feel like talking about.

In May I had my second round of Botox in my arm and leg for spasticity from my hemorrhagic stroke. I was readmitted into therapy a couple of weeks later.. My doctor wrote a prescription for eight wees of therapy three times a week, both for PT and OT. the outpatient therapy center we were going to decided I had "met my goals" for PT and ecided I only needed a couple of sessions, before being discharged. My OT only decided to give me two sessions a week indefinitely, we were more than willing to do three sessions a week but they never got around to upping the schedule, then my OT, as much as we love her was gone for three weeks for course teaching and a short vacaion, so during that time we had a different therapist every day and they did nothing more than basically what we were doing at home. Since we weren't feeling the love we decided to look for a different therapy location, and hopefuly much closer to us. We found one that seemed relatively good. and was only about half an hour away instead of the hour or so to the old place.

After a couple of weeks. we're still not convinced we made a good decision. The OT isn't as good as the one we left. The PTs are better, but still not as good as the one I was with from last December to April, but it's better than the nothing I was getting at the old place this time around. Both the OT and PT have pushed Baclofen the last two weeks.. My rehab doc is dead set against oral Baclofen, but that only leaves a Baclofen pump as an option. I really don't want to do the pump as that's major surgery to implant a pump in the abdominal region hat is basically a catheter into the spine to periodically administer a small dose of Baclofen into the spinal fluid.
after my craniotomy, I was really hoping to not have any more major surgery; at least not for a long time.
To even determine if the pump route is a viable option, they have to do a lumbar puncture and inject a little Baclofen then wait a few hours to see if it is effective. Something else I don't really want to do. but in reading about the oral Baclofen, it sounds like the side effects are greater and it is not as effective as the pump option. so it seems that my only hope for ever being able to use my hand again is this extreme option. :-(

I have my third round of Botox on September 18th.. My doctor decided my leg was progressing wellenoughthat I really only needed the injections in y arm this time.. but the following day in therapy my tone was so bad I couldn't make it out to the car and the therapist thinks I probably do still need Botox i n my leg again.. :-/

I wish the rehab doctors had more interaction with therapists and patients to see a better representation of how therapy is going rather than just getting occasional reports and seeing me once every few months for 15-20 minutes to determine the course of action. Even when I was in the rehab hospital, the doctor was never present for any of my therapy. how can they adequately asses the progress if they never have any direct involvement?