Thursday, February 23, 2012

One of 'those' medical weeks

Things have settled down with S.  Things have been fairly calm at home and if anyone has been loosing their cool it has been me.  Pain has contributed to that.  Exhaustion has helped but everyone that knows me knows I get nervous about doctors and dentists and tests and things so that can bring on a tantrum too and S is so self-absorbed that he does not think much about the practical things like leaving lights on so I have plenty to complain about or else I give up and spend the day checking lights, the stove and the windows (with so many storms and showeres around).  I feel like I am nagging at a kid.  And I have not really had the reserves to rephrase things a nice way either so I have been cranky in bursts but I have been having peculiar mood swings as you know which come and go accompanying this darn pain in the side.  As far as I know only infected gall bladders or stones that get caught in the biliary duct are painful and it is not either of those.  Yet I have also heard that just a bag full of stones or a fatty liver are painful whether they are meant to be or not.

The new doctor MF turns out to have a huge ego problem.  He has asked me to stop seeing any other doctors and make him my one and only GP.  I was considering doing that but I certainly was not ready to make up my mind and I felt pressured which I think is wrong.  I only really wanted to see him for ME/CFS and nutritional and supplemental advice because there is a gap to pay when I see him and my other bulk billing clinic is just around the corner for non ME stuff where I prefer Jo (being female) to do things like PAP smears and cutting cysts out of my chest (and other places) like she has done. M was also really upset that he was not getting a copy of the results from Peter Nash the rheumatologist but he was not the referring doctor and I did inform Dr Nash that I was seeing M so he didn't have to react like I had done something wrong. It all caught me off-guard and I slipped into agreeable mode out of anxiety instead of insisting that he was over-reacting because the appointment was made months ago last year before Dr M had even appeared in my life.  I did tell him I was going to see the rheumatologist and in that appointment he said "What for if you haven't got rheumatoid arthritis?"  So that makes him a bit out of touch with who treats fibromyalgia and a multitude of autoimmune diseases these days.  He should know that.  It makes me suspect that he has already decided that what I have is none of those things and that i would be wasting my time going to see the best rheumatologist in Queensland (according to Stephanie Buchton at the IBD clinic).  M has made a few mistakes I have picked up on too.  Like telling me I was low in Vitamin D when it was an old blood test and not even the one he ordered and so he prescribed me 3000 units a day.  It seems I don't need to take any more than the recommended Vitamin D now he has discovered his mistake!!  I'm still taking the Zinc drink he sold me.

All the tests M ordered last time were fine including liver function which supposedly should be elevated if my gall bladder was diseased.  I wonder what this pain is?  When I bend forward, apart from the pain in my side being squashed, it also feels like a sheet of plastic is being stretched down my back that is painful.  But I don't have a sheet of plastic under my skin so I know my description of the pain is meaningless to anyone but me.  My DHEA levels are good.  I guess that CK enzyme was good too.  Unfortunately M has been more interested in talking about my anxiety.  He suggested anti-depressants last time but I said no thanks and I suggested I just take my old faithful on an as needed basis.  He decided he wanted to change that and has given me samples for something I should take long-term.  I might try it...not sure but he should not have been upset with me for saying that I did not want to start taking it until I had had my gallium scan.  Now I am going to have to put it off another night because I have to go back for a 2nd Gallium scan tomorrow because today's showed up something in the bowel - a hot spot that looked more like a hot third of my large bowel to me from a distance sitting in the radiologists room while he fired questions at me about Crohn's etc.

I was there for 2 hours today at Lakeview Imaging having the Gallium scan and strapped still.  I am getting constipated again or hard on my pregnant looking tum and I am sure the gallium turning bm's hard and black has not helped but it is such a dramatic change what else could it be when the day before the gallium injection it was bright deep yellow?  But once again I was assured by the radiologist that my observation could not possibly be right and yet I have read on the Internet Gallium scan protocols that often include a laxative because the bowel contents need clearing out to get a better picture.  I will try a few things to help move along any more before my scan tomorrow hoping that the concentration of black indicating a hot spot is just backed up faeces but that is not the impression I got from the radiologist.  I am being called back because I have not been given an all clear.  He said it is not lymphoma so that is something.

I have not told you much about Monday at Maroochy Waters where Dr Peter Nash works.  I was expecting a rheumatology focus but instead it was all about the bowel which left me shell-shocked since some people were trying to suggest even the pain in my side was fibromyalgia.  Instead he said that bowel problems can cause fibromyalgia and I have a pretty weird history with duodenal angioectasias, Crohn's, and pancreatic tissue growing in the wrong place.  Arh but I argued, there is no sign of Crohn's disease in the blood work or the stool sample ordered by the IBD clinic, even less sign than 6 months earlier where a few things were slightly raised.  He said it does not always show up in blood tests which makes a mockery of anyone getting a clear blood test.

I don't know what to think, so for now I will not bother trying to guess.  I'll see what tomorrow brings and then after that I have the dentist next week and Dr Mark wants to see me again.  That is enough for next week.  Monday of the following week it will be the short synacthen test in Nambour with its stinging intramuscular injection and repeated blood tests.  It seems I have a lot to look forward to... ho hum.... not even including the gastroenterologist at Nambour Hospital and another endoscopy or two which have not been scheduled yet.  How am I going to last that long without knowing the results of all the other tests because I will not be seeing Peter Nash again until every test is done including the Whipple's disease biopsy.  I might have to wait months.

I notified GB surgery results should start flooding in because they get copies and to please let me know if there was anything amiss but they won't because they would prefer me to ring the desk girls at Coastal Joint Care.  Half the time these desk girls say that they cannot discuss the results - they did at Dr Mark's practice.  oh well - one step at a time.

I think you should know that out of five subjects so far, S has only passed two.  I am not sure I can convince him to stop wasting his money.

He is working afternoons most days and some longer days making leads for Green Initiatives and I think he does alright with that in that it does not seem to stress him too much.  He is not always asking for the car especially now that I have had to use it every day this week and he has been door-knocking Landsborough and Currimundi back suburbs even with all the rain we are having.  I got a bit worried when he wanted to get the boss to change the uniform and into what he suggested and today he is not so stable either.

The really funny thing is that Dr M has given me samples of the very same drug that S was put on when he was diagnosed way back but I can't talk S into taking any.  He has just started on another anxious day over his teeth "moving backward" in his head.  When I told him that it does not move, and it is nothing like the wobbly crown I had that he could watch me wiggling he just got angry.  It seems he will be trying another dentist.  He may be going to try another Uni too.  Something from Griffith arrived in the mail today.  He has been with Open Universities up till now with that attempt in between to get into USC which also failed..oh and then there was Swinbourne wasn't there.  I cannot keep up with him.

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