Sleepy, sleepy, sleepy...

Hello blog world. I seem to be having a little trouble getting to the key board currently but bear with me and I will attempt to do my best over the next few days/weeks. Let me explain. During may recent stay in hospital the specialist fine tuned my new medications which translates to he had fun playing around with the dose levels along with how many times of day I would be taking the medications. At one point he told me that the high levels and frequency of the new medications along with the high level of pain medications I am taking would knock me about a bit or in real words they will make me sleepy, a bit vague in the head etc. I told him at the time I didn't care as long as they helped.

While I was still staying in the hospital I guess I didn't notice the full effect of the medications. By the time I left my most pleasant stay in hospital, in which I'm sure you have all read about in the two previous post, but let's not revisit that most meaning full part of my personal life history. As I was saying, while in hospital because I basically laid around in bed a large portion of the day not having anywhere else to go and my biggest distraction was some very boring local television I did a whole lot of sleeping. Even during the those periods at which I was taken done to the scan area in a wheel chair I guess I just didn't notice the "knocked about" feeling considering how bloody bored I was.

Since I've been home that "knocked about" has become a bit more noticeable. I'm trying to do "normal" things and I'm finding my self challenged from all sides. I can't get past two pages of the current book I'm reading (Hannibal Rising by Thomas Harris for those interested). I start to nod off during conversations if there is a lapse in the conversation. Watching television is hopeless. Walking around is fine as far as the feet pain goes because the medications are working but at the same time I get the waves of light-headed dizziness that come out of no where and with out warning so I suddenly have to stop walking for a moment to steady myself. The biggest thing to deal with is the fact that if no one wakes me to take my pills (thank you hubby) I would sleep right through the next dose until the current dose wore off which would defeat the purpose of taking the new pills. It has been a chore keeping on top of my new pill schedule.

Anyway, that's why the title "Sleepy, sleepy sleepy...". All I seem to be doing is sleeping or trying not to would be a better way of looking at it and when I'm not sleeping I'm trying to keep my head on straight. All of this just so my feet don't hurt. In the end I will survive because I am told that these effects will eventually taper off or I will simply adjust to them. So please bear with me as I can't promise when I'll post much less can I promise or take credit for the content or should I say I cant promise everything I write will make sense which might actually be "normal" for me, who knows. You know how I tend to ramble. Take care and Enjoy...

The never ending story...

No not the movie, the one about my feet and the peripheral neuropathy I'm dealing with but not having much luck getting anywhere in relieving the pain. Anyway, when we last left the saga I had been to see my specialist neurologist, whom I had seen previously on numerous occasions for this problem and we have been trying different treatments to manage the neuropathy as it can not be cured. So during this last visit we started on the next drug, which also happens to be the last drug in the list of currently available drugs to help me in trying to stop some of the pain.

This drug like many of the medications they use to treat this type of pain are the same medications they use for people with epilepsy. The medications interrupt certain nerve patterns and attempt to either bypass the nerves that are not working properly, fill a chemical void that is lacking, or something like that it all starts to get a bit confusing.

So, I started on this drug called Epilum (Valpro 200 is the other name) and it's the type of drug you have to dose up to a certain level before it works properly. What I mean is you start by taking one pill twice a day for a week then go to two pills twice a day and then three pills twice a day until you reach maximum level, which for me was three pills twice a day because I'm already taking another anti-epileptic medication and the two would clash after a certain level. I was almost at the end of the second week, Thursday to be exact and it went a bit pear shaped (translates to went all wrong). During the first week I was taking the new drug I wasn't sure if anything was wrong. I'm used to taking medications and quite used to taking new ones as of recent. A lot of times when you first start you may get a funny feeling in your stomach or head etc. but it usually passes. The thing I was feeling was stomach related, a bit of reflux and at time a bit of trouble swallowing but nothing weird as I've had that trouble before, which is another story (and get your minds out of the gutter). If you really want to know write to me and I'll explain that one to you.

Anyway where was I? Oh yes, reflux. I told James about it on Wednesday of the second week and told him that the next time it happened I would let him know so he could see what was happening. Well it happened during dinner on Thursday night and James said it looked like a swallowing issue opposed to a breathing issue. Well within minutes of that happening it started to escalate. I got to the point where I felt like I was drowning. I could not breathe or to be more exact I felt like I couldn't get enough air. To add to the problem I started to panic which added some anxiety to the mix. Okay a lot of anxiety. Needless to say James called the ambulance.
I was taken to the Emergency Room, which was fun as I got to ride in the ambulance. Okay I'll be serious so down a the ER it's good that James works there as you get a few strings pulled and I was seen right away not to mention I was not breathing. I did tell you I wasn't breathing right? Oh right serious, it turns out after 7 hours in the ER, numerous blood tests, x-rays, a urine sample and so on the conclusion was that I was having a reaction to the new drug. Even I almost had that one figured out but you're supposed to follow the rules and do all that other stuff just to make sure. I also learned a new medical term for my emergency condition and it's called "Air hunger".

So I've decide, with much deliberation (NOT) that I don't want to take that drug anymore. I am seeing the specialist again on the 15th of January at which time they will also be doing an MRI to look for possible bone degeneration in my spinal column which would possibly increase the nerve malfunction in my feet opposed to causing the problem itself. If they find said degeneration I have no idea what we do from there but all shall be revealed. Until then I just keep moving forward. So what did you do last Thursday?

(And to anyone in my family reading this, know that I'm fine and that if anything really bad were to happen James would call you. This was not that bad. Well depends on what side of the fence you were standing)

Happy feet...NOT

I'm sitting here, it is 4:30am. I woke up from a weird dream and my feet were aching really bad. I don't know if it was the weird dream I was having or the pain that woke me. I'm glad I woke from the dream as it was not a good dream but not really a nightmare. I dreamt that I was having my foot pain and the newly acquired hand pain, which we think is a side effect of one of the medications I'm taking to control the foot pain. I can't win!

Anyway, I wasn't able to get anyone to help me with the pain (in the dream). All the doctors kept telling me, is there was nothing they could do about and to get used to it(the pain). The doctors said the pain was a direct result from the length of time that I have been HIV+ (21 years). In other words the disease had been affecting other functions within my system not just my immune system. The funny thing about dream is that they reflect recent events and James and I were at breakfast yesterday morning talking about this very point however not specifically about me but about how people sometimes have a doctor that tell them to get over themselves and just deal with the pain or a side effect of a drug and to be grateful they are alive.

Let me say that I am very grateful to be alive but it is by my sure determination to be so. I put up with the pain, taken all the crappy medications and dealt with all sorts of health problems that this disease has dished up to me over the years and it can be damn depressing. I'm not the only one that has dealt with these issue as I know a lot of other HIV+ people who have similar problems and they have all coped with their issues in the own way. I've written about this before and I'm sure I will again because it is a way for me to cope and it helps me get it out of my system. So, I will inevitably continue to write about how I deal or don't deal with living with HIV and at the same time try to go through life "being normal".

I took my pain medicine a while ago and the ache is easing but under it all I know it's still there and some how I need to keep it from winning... I will.

Don't even ask about the hand pain...