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?

I hate the term "POZ"

I understand why some HIV people call themselves "POZ. but I hate that term.. so many gay men wear it like a badge, of honour like calling themselves "Captain" or "Dr." but those badges are sign of accomplishments. being HIV positive is nothing to be proud of! I mean how can someone be *proud* to have gotten a chronic and , ultimately terminal disease? I have found myself more open about my HIV than I thought I would be, but more so for the educational aspect. trying to stress the fact that *anyone* can get it and there's no way to know when someone does have it and that people should be responsible about sex.

when I first found out my status last year I listened to a few HIV related podcasts and on one, the guest referred to themselves as "being HIV." That really clicked with me.. it was still a shorthand way of saying "HIV positive." yet it wasn't like a badge of honor like saying "I'm POZ." to me, calling myself HIV is like saying "I'm the face of HIV," as I am a face of HIV and will be long after I die; whether I die from AIDS or other causes.

I'm a bit anxious about my ppointment wirg Dr. C next week.. wiill my CD4 be high enough to drop one of the antibiotics?will my metabolic panel still be okay? I've gained so much weight since last year and have tried to cut things like fried foods and sodas out of my diet as much as I can . I plan on asking for some sleep aid medicine again... the generic stuff just didn't do a damn thing and I need to get a few decent nights sleep every now and then so I can speak coherently and not always look like I'm doped up on painkillers or something.

I'll e back after Thursday

better late than never!

It's been a couple of months since my last apt. with Dr. C, but I thought I'd post an update. I'm now "undetectable"!!!.. (that is viral load less than 48)Quite a bit better than the 669,000 I started at a year prior. my CD4 was 69, up from 10 Last June. even after all the chemo I had my T-cells have continued to increase! I now weigh... OMG... 169!! up from my puny 108 last April.

In March, I was let go from physical therapy due to the tone prohibiting much further progress And in April I was let go from Occupational therapy for the same reason. I had Botox injections on May 15th that have seemed to help significantly better than the first time in the hospital so I am in the process of being re-admitted to my outpatient therapy. Hopefully, things will pick back up for the recovery of my hand function... B and I walk between 1 and 1.5 miles a day, when I have the energy.. Sleep hasn't been working too well for me lately, with my docs not prescribing effective sleep aids for me... the clerk at this vitamin shop I buy supplements from gave me this stuff he says really helps with getting restful and productive sleep.. going to give that a try and see if it helps any. I'm getting tired of ineffectiveBenadryl and Tylenol PM type stuff.

I have my next ID apt. in June and if my CD4 is up high enough.. I will be taken off at least one of the prophylactic antibiotics. Im still on the Atripla, since it seems to be doing its job.. thank godness

I've taught one of my former students a couple oftimes since the January date.

And am finally confortable enough with my teaching abilitiees that I've approached one of the band directors that I used to teach for for many years about retuning to teaching. doing lessons from the hous, which has not ben very usefulin the past (parents don't want to drive the students any further than the school for lessons, even though it's only about 15 minutes away!)
Thankfully my disability check covers my half of the house payment each onth, so I will finally have the luxury of being picky about who I teach. rather than having to teach any and every student I can get.

I plan on taking students on a trial basis, and if they don't like me, they are free to find someone else, no hurt feelings and or aren't willing to do the work, the they are out so I can find someone willing to work and be dedicated.

Back in the Saddle Again

Wednesday, Jenuary28th, the six-month anniversary of my stroke: I did something I didn't think I'd be doning again, especially this soon. I taught again! A couple of weekends before, I was having a particylarly low time from not playing/teachin. So I contacted the parents of a couple former students That havebeen kind in keeping in touch with me through all of this. asking if their kids would honor me by letting me teach them one time before Solo & Ensemble ( for free, of course, as I'm no longer their primary lesson teacher and wasn't sureHow I'd handle it anyway. Plus, as I saw it, I'd owe them for the time, as They would be doing me the service of helping me feel like a eaxher again) These were two of my favorite junior high saxophone students fro last year, who were my most favorite students ever and both really talented players. The kind of students that made the whole week worth while amidst all the awful uncaring students who don't practice or care how they play. To have them back-to-back was almost too good to be true It would have been nicer if I coould have played during the lessons, but it was still so much fun that I was sad when the second student was heading out the door. But the experience put me in such good spirits for the rest of the week, My last set of labs are getting even better. Before my lastround of chemo, ( before Christmas my CD4 was 51 and viral load was 99,. After chemo at the beginning of January, iCD4 had dropped to 43 but still up from the labs October and my viral load is down to 49( just one point awat from "undetectable"). So now that I'm done withthe regular full chemo treatments, my numbers should continue to improve