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...
