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)