My how time flies...

...when you're doing other things besides writing in your blog. Hey there everyone, believe it or not I'm still alive and well. I'm sure some of you have given up the ghost and decided to stop coming by to read this blog and that's okay. As for those of you who do check in every once in a while, I admire your will of conviction to stay with something and I thank you. I understand that this venue is my space and it lives when I say it lives, it breathes when I say it breathes and sleeps for as long as I want it to sleep. I quit promising that I would actively keep writing in this blog because I hate breaking promises. So now that I'm comfortable with posting when I want, or at least as comfortable as I'm going to get with not posting except when I want to post; I am then able to come here when the urge hits and today the urge hit.

My life has been one huge roller coaster ever since a fateful day back in April 1986. That was the day that I found out that my life would change forever. That was the day I thought I was going to die sooner rather than later. That was the day I found out that I was HIV positive. A lot has happened since that day and hence why I said my life has been a roller coaster ride and sometimes the ride from hell. There have been many twist and turns, a few big loops, a couple of really long drops and one to many bumps. Non the less I continue on this roller coaster I now call my life, twist, turns, loops, bumps and all.

Since that day I fought tooth and nail to stay with the program but at times I felt like giving up as it is/has been all too much. I have been so sick that I was at deaths door one to many times. The disease took me there on a few occasions and other times I took myself there by abusing my body with one too many drinks and a lot of other substances that I should have stayed away from. After all of that I'm still here and sometimes I can't believe that I am because technically I should have been gone so long ago just by way of abuse not to mention giving the disease a leg up.

Oddly enough during all of this time I have been able to love and be loved. Now, I have loved many times in my life but specifically I found love three times since that day. I never thought I would be able to have love and live long enough to engage in relationship with another person but I did. Unfortunately for me of those three loves I lost two of them I did not lose them due to incompatibility in the relationship. I lost them to a demon that I could not battle nor win against Those two loves/lives were taken from me by the angel of death.

After the first death I never thought I would be able to love again. I had my heart torn out of my chest the day he died and that hole took a lot of time before it filled back in. The second time death stole love from me it not only ripped out my heart but it took a large part of my soul with it also. I knew then that I was never going to love again as I could not bear the thought of enduring that type of pain and emotional heartbreak ever again. Love on the other hand is a a funny thing and it had different plans for me. Whilst I was grieving the lose of my second love I met a very kind soul who put out the hand of friendship and understanding. This person allowed me to pour out my heart and all the time whilst I relieved my pain they just sat there and listened and listened and listened and then they listened some more. They allowed me to talk for hours on end and at the end of each emotional dumping on my part they where still there to tell me that I/it would be okay and eventually I believed them. What surprised me the most about this friendship is that I found out that I could also love again. Love was something that I had forgotten and it had dropped completely off my radar but even though i didn't see it love was till there waiting for me and waiting for the right moment for me to let it back into my heart.

I not only found that I could love again but I found a person to love and as I said love is a funny thing because I found love when I was least expecting it. I found love within the person who lent me a gentle hand and a non-judgmental ear. That man allowed me to pour my guts out and to talk days on end about the great lose of love I had with another man and yet in the end he was still willing to open his heart and allow me to feel so loved that at first it was a bit overwhelming. I was not sure I could or want to love again. The contrast between the warmth and kindness I felt for this man combined with the terrible agony that tore at my heart and soul from the lose of another man made my head spin. In the end I decided to throw caution to the wind and gave love another chance. I realised after all of those hours of talking that love is what you make it and sometime you fall out of love and sometimes love is taken from you but no matter what, you will always be able to love if you choose to do so. So as I said I chose to love again and because I did I have just celebrated the eleventh year of being in love with the most caring, kind, compassionate, warm, giving, and sometimes intense but always loving man I have been so blessed to meet. Oh and did I mention he's not bad on the eye either.

So, I say Happy Anniversary to my most wonderful husband and to him I say thank you for helping me find love again.

Letting it all hang out...

Tuesday night was a bit of an emotional night for me. I'm not even sure what hubby and I were talking about when everything started to disintegrate but I basically ended up having a little meltdown. My feet were hurting super bad. They started hurting while I was in hospital and the specialist neurologist had me increase one of my medications to try to calm my feet down. The specialist believes that the new pain is a result of the nerves in my back that have recently been untangled. He also believes that the pain will subside as the nerves begin to calm down and they get back to performing in a normal manner. I hope he is right. The increase in medication not only brings my pill count for the day up to 41 tablets but the additional medication does a trip on my head and makes me extremely sleepy and zonked out.

Anyway, where was I? Oh yeah my feet were hurting really bad and they had been hurting all day even though I had taken the extra medication. I had also taken an extra pain reliever that I have in case of emergencies. I was so medicated that I should not have been feeling any pain but I was. I laid down in a dark room with the covers over my head to shut out the world in some attempt to make the pain go away but unfortunately it wasn't the world that was the problem it was my feet and I could not get away from them seeing that they are attached and believe me I was more than willing to have them cut off at that point.

I got up after a few hours. I think I did eventually pass out ay some point becasue even my feet passed out from the pain. They literally oveloaded with pain. I went into the living room and sat in one of the chairs that is most comfortable for my back after the surgery. I tried watching television to distract my thoughts from my feet but this pain would not go away. The pain was a constant ache. It seemed like it would never leave it felt like it was always going to be there. My thoughts and emotions were on overload. Hubby could tell I was not feeling well and somehow the conversation started. I'm not sure what was said but at some point the walls came tumbling down and all of the pain, angst, turmoil and raw emotion that I had been holding in for basically the last three years came pouring out.

Ever since my feet started acting up three years ago I have been struggling to maintain some semblance of my life and who I am. I have given up so many freedoms and I feel completely helpless. I'm unable to drive due to the various medications I have to take to keep the pain at bay and so I have to depend on hubby for whenever I need to go to the store or for what ever errands I need to run. I feel bad having to ask him all the time "Will you take me here or will you pick these things up". There are many things I would like to do around the house but either the pain stops me from either completing a job or from even staring the job. I would love to work in my garden but I can't due to the various positions you have to get in to pull weeds and plant plants. Everything I do some how either affects my feet or is affected by the pain in my feet which keeps me from accomplishing the task. I can't even focus on typing up a post for the blog because I end up falling asleep in front of the computer. I know you see these long post and you're reading this one now but it takes me forever to actually process the post itself before I can even hit the publish button.

So I ended up blubbering all of this to my hubby. I told him how I feel like a non entity. I feel worthless and in many ways ashamed. I used to be someone and now I don't know who I am. I try to keep this calm exterior with the occasional lapse but in most cases I keep all of my fears and troubles to my self. I suppose with the recent back surgeries everything just became to much. The added pain in my feet even if it is temporary it is here now and it just throws up in my face all of the fears and angst I have about my life. I hope beyond hope that this added pain will be just temporary because if it's not it will just be another blow to my inner self, even though I know it's not my fault it just becomes one more thing I can't fix nor do I have any control over and I need to feel I have some control over my life once again.

Hubby is worried about me but I told him I would be okay and that I felt better for finally talking to him. I never talked to him before because he has so much on his plate now with his mum's cancer and all. I know he is my partner and I should be able to tell him things. I was trying to do the right thing. We have talked since Tuesday night and we had a nice quite day out yesterday starting with a lovely breakfast at a local cafe. I know in my heart that things will eventually even out it just sometimes has to be re-evaluated and we all sometimes need to ask for help. I'm lucky that I have a partner that is willing to lend me that help.

Back to back to back...

Well we're back from Sydney and I've seen the doctor. To make a long story short, we have to go back to Sydney next Thursday. I will be checking into hospital on Friday morning at 6:30 am to have lower back surgery. Since it's a Friday I don't suppose much will happen over the weekend and I'm looking to be there based on that until at least Tuesday but more likely Wednesday. I'm not sure if the doctor will restrict my flying or not but if he doesn't then I'll be back home ASAP.

I have to have the surgery as the opening were the nerves run through up my spinal column is narrowing which is affecting the overall nerve patterns. This is the reason I'm having so much pain from my back and down my leg not to mention I'm losing sensation in my left leg all together. We are also hoping that as an added bonus this will give me a little extra relief from the pain associated with my peripheral neuropathy in my feet. Only time will tell if that wish is granted.

As for James' mum, she is holding her own. She needs to gain so much weight but she has no appetite. we took her out to eat several times and she did eat but other than that she eats nothing. We will work on he some more when we are up there next week. She's a fighter and we will fight along with her as long as she wants to fight.

So that's the excitement around here. I'll still post a few useless post between now and next week until then I'm out of here. Enjoy...

Hi Ho Hi Ho it's off to Sydney we go...

Well, we're off to Sydney for a few days. I have two doctors appointments on Monday as well as another MRI scheduled of my lower back to see if the problems with my lower back got any worse since I was in hospital a few months ago. If it is worse than we will start a course of steroids to hopefully reduce some of the swelling on the two disc in question. If that doesn't work then I have two options steroid injections or surgery. I have no plans to have the injections because they are way to painful and basically I'm not a big one on pain. I'm sure it will all be just fine.

The other thing the doctor will want to know is how I'm doing since we increased one of my medication a month ago. All I can tell him is that I fall asleep a lot more often and especially whenever I'm stationary for more than ten minutes or sometimes even in mid conversation. I actually fell asleep the other night for an hour sitting on the toilet. Good thing I didn't fall off and hit my head on the bathtub. On top of that I never did what I went in there to do.

They other strange thing is I have these little like mini sleeps where I'm asleep but not asleep and I have these kind of little dreams. When I start to wake up I start to act upon the dream as if it was real. It's hard to explain but extremely freaky. Anyway, I'll ask the doctor about it. We've decide that it was really a good idea that I gave up driving. You can only imagine.

The rest of our time in Sydney will be spent with James' parents so that James gets to spend some more time with his mum. I think it's really important as we don' know how long she will be able to fight this cancer. The doctors said 6-12 months. We are all hoping for 12 and maybe more who knows others have down it.

Okay, I best go finish packing. James is at work. He will be exhausted after doing 4 shifts in a row and it's been a busy three days so far in the Emergency Room. Maybe tonight they will get a break. At least James is on triage so he gets to sit down for a little bit in between patients.

I'll let you know when we get back and who knows I may even have some pictures to share as I'm taking the camera with me. Until then you take care and just Enjoy...

A ten day sentence (I mean hospital stay)...

Warning: this will be another long post. Also a comment was left on the previous post saying that I was awfully chipper in my previous musings or the pain medicine was working over time. I would put my money on the pain medications as there is never anything chipper about a stay in hospital. So, when we last left our fearless adventurer he had run in to a bit of a road block, finding himself ill and about to be booked into a stay at the local hospital.

I spent one more night in the hotel before I started my time in hospital because my appointment with the specialist had run late and it was already almost 6:00pm so they weren't able to book me a bed until the next morning (Wednesday). I enjoyed the reprieve with a bit of dinner and a last minute cuddle with my partner. I was also feeling a bit better that evening because one of the first things the specialist did was to change the current level of my pain medication from 60mg Oxycontin twice a day to 80mg twice a day. The extra pain numbing boost was a welcome bonus to the impending doom of a hospital stay.

The following morning (Wednesday) we got a call from the specialist's intern who said my room/bed was ready. Now I can't say that I dashed quickly to the hospital, because even though I knew it would be a good thing to finally try to get to the bottom of this if we could, but I mean really who wants to spend time in hospital? Anyway, when we arrived I was taken up to ward 9 South (Oncology/Hematology). Now you might ask why a blood based ward when the pain is in my feet. Well the answer to that my friend is because no matter what I go into hospital for they always take the underlying factor of my HIV+ status into the equation. Since HIV is a blood based virus then the patient is placed in a Oncology/Hematology ward, or so that is what I have always been told. I've been placed in the same type of accommodation during each of my previous hospital stays since becoming positive 22 years ago.

We arrived at my room/bed and bed would have been more accurate as I was placed in a four bedded room with two of the four current beds being occupied. This was going to be fun. The four beds shared a shower and bath not to mention a shared toilet which left not much privacy due to the paper thin walls if you catch my drift. The two other occupants seemed nice enough, but then again looks can be deceiving. One man was in for some sort of kidney, blood, dialysis thing and the other man was just plain old. Sorry don't mean do be ageist but it was true. The nurses seemed efficient, pleasant and most of all capable. I can be highly critical of nurses seeing that my husband has been nursing for the past 20 years so I know what to expect.

I got settled into my bed and took note of my bearings; bathroom directly through the paper thin wall to my right, nurse/television control buzzer to my left, exit down the hall and hang a quick left to the lifts (elevators for my friends in the states) and that would take care of my needs for the moment. As usual I hadn't been there long and a nurse showed up to take some blood. The some blood turned into ten tubes of the stuff taken out of my left arm. Three quarters of the way through I asked her if she was going to leave me any blood to which she politely replied "Don't worry you still have what's left in your right arm". I also got a visit from the specialist who asked if I was settling in okay and I said yes. He asked how the pain was and if the new dose from yesterday had helped and I said it helped a little but I was still get some shocking (literally) moments. So he bumped up my Oxycontin to 100mg twice a day. So within a span of less than 24 hours I had gone from 60mg twice a day to 100mg twice a day. I was starting to worry rather or not I would be able to function at all by the time this was all over if they kept increasing the dosing. I was already pretty drugged as it is. Anyway, the rest of the first day was quiet except for an x-ray, pretty common stuff really.

The next few days were pretty standard. I saw a Rheumatologist for the aching in my hands feet and ankles. She said she would schedule some more blood tests and a few various scans and stuff. There was more blood drawn than I believe necessary but none the less it was drawn. I had a bone density scan done of my lower back spinal area, hands, feet and ankles. The scan of my spine along with the MRI of the same area was looking at the point at which the nerves start to spread away from the spine. They were looking for any disruption or problem which would be aggravating the neuropathy. We weren't looking for the cause we were looking for the agitators, if there were any. Also on Monday my pain relief was bumped once more from 100mg Oxycontin twice a day to 120mg twice a day. All in all I made through to the first weekend and during that period not much happened purely because it was the weekend so I guess that in the hospital unless it's critical they don't do scans and stuff.

This would be as good as place as any to discuss the food. Now we all know that hospital food is notoriously bad and I have been in hospital way to many times to pretty much attest to those rumors. I have been to at least one hospital that I can remember where the food was actually quite nice, of course it was a private hospital and I was paying through the nose for the luxury, hell it even had cable television, but I digress back to the food. Here's my question why is it that while you are in hospital, which means to me that you must really, really be sick or otherwise you wouldn't be there, why oh why than do the try to kill you with the food? I mean you already feel bad and they keep telling you need to eat to keep up your strength. That would be all fine and well except for that fact that everything sat done in front of you that is supposed to be food is tasteless, in many cases unidentifiable, and in most cases what is supposed to be hot is cold and vice verse. I just don't understand. To top it off it is delivered on schedule so every day, 7:00am breakfast, 12:00pm lunch and 5:00pm dinner with variance of only +/- 5 minutes usually it was on said time. How do they do it? The only other thing you can depend on was the ice cream. you know the type. the kind you used to get when you were in elementary school. It was one of the few things that was edible. I mean it's not primo ice cream but it also hasn't changed since I was in school. it still comes with the little wooden spoon. I lost 7 kilos (15lbs) during those ten days. So ladies if your listening, the hospital diet is the way to go.

Over the weekend one of the interns that works for my specialist cam to see me on Sunday he told me that on the had organised an ultrasound of my back and kidneys region for Monday and that they were still trying to organise an ultrasound for my hands. I said great. I was told that I couldn't eat anything after midnight and I could have water only to take my pills in the morning. Once again not a a problem. So Monday morning arrives and not late into the morning a porter came up with a wheelchair to take me down to the ultrasound department to have my test done. The next thing I know this technician is lubing my hands up and getting ready yo do the scan of my hands. I said oh great the were able to get this test scheduled to. She asked what I was talking about to which I explained what i had been told by the doctor to which I got the reply " I don't know what you're talking about. you're not schedule for a kidney scan. we should know we're the ultrasound department. " I told her I was questioning any of that I was merely relating to her what i had been told. She again told me that none the less I wasn't scheduled for the kidney scan. I said " What ever." During the hand scan she asked me at on point while pressing on this one joint as to rather it hurt or not and I said no. to which she responded "That's not what my notes say." I'm all like well sorry about your notes but that doesn't hurt. I should have stopped there but inadvertently I let out of my mouth that I wish I had known that the other exam hadn't been scheduled because I wouldn't have fasted to once again she had a quick reply. "I don't know why you fasted either. You don't have to fast for that." I closed my mouth at that point and waited for it all to be over. After returning upstairs to my luxury accommodations I made a very reserved yet firm enquiry as to what the hell just happened. Shortly after I was told that there had been an administration error which had been rectified and I would be having the test done in the morning 100% without a doubt. Apologies all around but unfortunately I would have to go without food one more night. OK fine as long as you promise it will happen tomorrow. "We Promise!" The next morning the porter showed up bright and early at 8:30. This is a good sign, punctuality. I arrived in the Ultra sound Department and five minutes later a girl came to collect me, but instead of collecting me she said your test has been cancelled and promptly had me sent back upstairs. Well doesn't that just bite the big one. Needless to say I was just a tad NOT HAPPY. This time my enquiry as to what the hell just happen was not reserved but way more than firm let's say it was ballistic. In the end apologies all around sorry for the mess up but yes the test was supposed to be canceled but another error. Now I'm just worried about if you can't schedule a simple test how the hell are you going to diagnose anything?

I eventually calmed down after talking to James who unfortunately had gone back home the previous Sunday because of work which also didn't help my mood. The rest of the week went by quietly they continued blood taking and they added a new medication to the mix and they kept increasing it everyday. The doctor told me it would really make knock me about along with the other medications I was taking but he thought it would work. From Thursday afternoon (day*) until I saw the specialist the next afternoon I had my first pain free hours in three years. We had done it. Albeit as i said using high doses of a lot of things but I was not in pain. My feet were still numb to the touch but numb I could handle. So the specialist said I would be paroled in the morning and I thanked him for all of his efforts and we were done. Saturday I waited for my discharge papers and medications and the funny thing about that day is I finally got discharged at noon by which time lunch had been served, and I'll be damned if it was not the best looking plate I had seen in 9 days. Go figure.

Epilogue. As it stands I have been pain free for 6 days with two small breakthrough episodes for which the doctor gave me another pain medication that works quickly but as it stands things look good. The downside is my head is in a constant whirl and blur, hence my rambling and god knows about clarity of this post and then there is the fact that i now am taking 30 pills a day to make life what it is and what that is is that I can just keep going forward until something better comes along. Thanks for your patience have a great day and Enjoy...

MRI, doctor visit, hospital in a blink of the eye...

Get ready this is a long post.

So, as many of you may or may not know I have been having a horrendous time with the peripheral neuropathy (nerve damage) in my feet and we have had even more trouble finding the right way to manage the pain. We have tried all of the usual neuropathic medications but to no avail. I will say that in most cases the medications tended to give some relief albeit only temporary. We ended up with the last alternative which is analgesia. Now the type of analgesia I'm talking about tends to be a bit stronger than Panadol (Tylenol to those of you in the in the US). The analgesia I'm talking about are opiate based pain relief. You know the ones I'm talking about, the big guns or party favours if you like for those of you living in slightly more metropolitan areas such as LA, Sydney, London, New York, Dallas, Paris, you get the idea. Not that I'm suggesting that any of my loyal readers (all 6 of you) would every think of taking said drugs as anything more then appropriate pain management. I'm sure that most people would never every see these drugs as anything more than pain management much less a form of entertainment. Would they? Anyway, we did keep one of the neuropathic medications to take along with the pain relief as we felt we would get better coverage over the pain.

In the end the pain still won. I was having what is called breakthrough pain which is what it sounds like the pain actually breaks through the pain relief ceiling being provided by the drugs. On average these breakthroughs happened three times a day and some times more. The pain lasted around thirty minutes but it could last for an hour or more and during those periods of breakthrough pain I would score the pain level a 5-8 out of 10. When I wasn't in one of those periods I would still have an occasional zing of lighting run through my foot or my feet would suddenly feel like they were on fire but if those things didn't last long I just ground my teeth and rode them out. Also because the nerves are messed up I don't feel the ground so well meaning that even thought I get this pain my feet at the same time my feet are are numb. Go figure???That's why they call it nerve damage.

Now that we are all up to speed, and I apologies for boring to those of you who know that part of the story, let's talk about what happened when I went up to Sydney for my MRI. So the pain was totally out of control and by the time we went to Sydney to have the MRI done and to get a review by the specialist neurologist, I was taking 60mg of Oxycontin SR twice a day. Oxycontin SR is the extended release formula of oxycodone so you get relief over 12 hours opposed to a sudden rush of pain relief like you get from oxycodone which is taken like every 4 hours. The problem as I said earlier is the pain was breaking through between doses. Anyway, we arrived in Sydney on Monday night and the test was scheduled for the next morning. We went up to the hospital at 11:00am and handed in the appropriate paper work, which I had filled in prior, to the out patient desk and sat down. I was having a few claustrophobia issues ever since my little trip to the ER a few weeks back when I couldn't breathe and as many of you might know an MRI machine can give people a kind of oh say casket like feeling, yeah that's it, like being in a box that you can't get out of and definitely not the place for a claustrophobic. They even ask you on the pre-test form rather or not you have issues with claustrophobia. As a pre-caution I took 20mg of Valium to calm my nerves. I told the women who was giving the test what I had taken and she said she thought it was a bit excessive but what ever it takes, honey. In the box I went and half way trough the woman who had been occasionally talking to me through a speakerphone within the machine finally said she was going to quite asking me if I was alright because I was snoring to much. Hmm??? guess the Valium worked.

Test all done and it was off to the neurologist for his review of the whole situation. I've been seeing this doctor for a few years now for this problem and he is the best that I know of and I trust him. He did his usual exam and looked at the results of the MRI, which were inconclusive naturally and of no help what so ever other than to tell me that I have a bit of arthritis in my lower back. Hell, I could have told him that. I'm then one who groans every morning getting out of bed and it ain't because I don't want to get up. So then he says " When do you fly back to Hobart?" We said "Day after tomorrow" which his reply was "Ow (big pause), because I think it would be best if I admit you into hospital so we can deal with this properly." James and I looked at each other and just turned around an said "If you think it's best we'll do what we need and we'll go from there." And, that is how I ended up spending the next  ten days in hospital.

Now, I think that's enough reading for your poor bleary eyes at the moment, not to speak of my poor fingers. I will tell you all about what happened in the hospital tomorrow. It's a long post too, but just all sorts of fun. I guarantee. I hope some of you weren't expecting to hear about the whole thing because I am having a hard enough time typing this as it is, I mean you think 60mg of Oxycontin twice a day is bad Hmm??? you ain't seen nothin' yet. You'll understand tomorrow. Until then 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)

Needle and the damage done...

I finally did it I went for the needle to relieve the pain. I've tried all sorts of drugs but never the needle. I know many people use the needle not only for the pain but to help them deal with so many other problems in their lives and most become addicted to using the needle. I had to try something I had to make the pain go away. I've only tried it once but I'm sure I'll be back for more. When the needle went in it stung and then a slow burn started travelling over my skin. The burn gave way to numbness and then there was only this dull heavy feeling. The payback is that now I ache from where the needle entered. I don't know why anyone would want to go through the initial pain for such short term relief. I long for that dull comfortable numb even now. You do realise I'm talking about the use of the ancient art of Chinese acupuncture???? Geesh you people!!!

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...