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.

Dr Peter Nash - rheumatologist

Tests ordered by Peter Nash (rheumatologist) yesterday

• Short synacthen test
• Gallium scan
• Small bowel biopsy for Whipple's or anything suggestive of active Crohn's via a referral to Dr Johan Van Den Bogarde a gastroenterologist at Nambour GH. Stephanie Buchton from the IBD clinic has been threatening another colonoscopy so I guess both ends may be done at the same time :(
• Blood tests Iron stores (I think it says), Serum EPP/IEPP, RhF, CCP antibodies, HLA B27, ANA, ENA DNA ANCA ESR CRP

Update:  All tests have been reported to me as "normal" but I have not had the endoscopies yet because I am on a waiting list.

The Counsellor Who Could Not Deal with Him

DHEA
CK - creatine
E/LFT's
were the blood tests I had today while S was asleep here.  Also Pam the counsellor phoned for S but I took the call because he was still in bed (on mattress). She asked if she could bring back his gear because she didn't want him "upsetting the household".  S got up so completed the phonecall himself.  She has been and gone and S paid 2 weeks in advance and has nothing to show for it now.  Once again, his needs will be met at my expense when I can least afford it.

The test for Addison's disease is $372.75 and Medicare only rebates $107 so at the moment I cannot afford it.  It seems I am out of pocket with the last lot of tests too.  I made enquiries.  Nothing they can do.

"I can't live there" he says

8am this morning in rolls Ange with Connor so I could give him his birthday present but S was with her and is still here.  He said that he can't live there because the flesh eating bacteria are wasting away his chest muscles.  Its the type of housing that is doing it even though the number (59) was supposed to be a good number.   He is lying down now but I guess he will be stressing me out again with all this irrational talk.  I don't need this.

I think S phoned Ange for a ride from the bus station because he had organized her to come over at 8am.  She may have been worried because she rang yesterday while I was crying and I could not talk.  I had previously sent an email explaining that I wanted to see Connor but I was not well enough to get there so I guess that is how it all started.

I am still waiting to here from the lab about the test for Addison's disease.  It takes an hour and it is not done locally.  I wish they would hurry up and phone me because I want to go back to sleep while "he" is sleeping after taking some of my tablets and pinching my one stubbie beer that I keep in the fridge.

I can't blame him for it, but I have once again switched to chronic diarrohea after eating my first meal last night because finally I was hungry.  It's not the Movicol because I have not been taking any.

Anyway, now I have both S and Connor staying the night tonight.  Ange is 19 weeks pregnant and she is also getting married later in the year in a small beach wedding with a celebrant.

Doctors and Counsellors and breakdowns

I have not been very well.  I have had a pain in my right side which seems to be radiating pain around to my back, down the side and random twangs elsewhere.  It is a boring kind of pain which is consistent but which increases and decreases in intensity.  It gets worse after I eat and so not only have I been wary about what I eat, I also developed nausea and I did not have much of an apetite.  I have had days with only semi-solid food like soup and protein shakes with rice wheels (flavoured rice cake mini wheels that are Gluten-free).  I have been trying to stick to a Gluten Free diet and the FODMAP diet but it certainly did not help this pain in the side.  I have had the same pain once before for a week or so and it went away but I do not remember feeling this bad then which was last year when I had an abdominal ultrasound and they said I had a slightly fatty liver and gallstones. I can't remember what I had the ultrasound for but it was none of the above but I remember the pressing on the right side with the scanning device with its gel, aggravating a pain in my side which was fairly insignificant until then.  It was afterwards that it started bothering me.  These days it's bothering me a lot but no-one seems to want to check my gall bladder.

I went to a new Doctor who is also a nutritionalist a couple of weeks ago.  He seems very nice and he seems determined to get to the bottom of what is going on with me even promising me that he will make me feel better.  It was nice to hear but today was the third time I heard how well I am going to be soon.  You cannot help but get your hopes up a little and think "Maybe this time".  I have been feeling so weak and tired that the last thing I have wanted was to go to any appointment but there is always something each week lately including the dentist and the IBD clinic.  Nothing is having a good outcome though.  The new doctor failed to address the pain in my side last time I went and the IBD clinic said it was chronic constipation and told me how wonderful I would feel in 4 months at the next appointment after having used Movicol, moderate fibre, a probiotic etc.  The Movicol regime seemed a bit extreme to me because I have a problem with diarrohea which Stephanie (the specialist nurse) said was overflow diarrohea.  I know I have been constipated and I had been again until the day I went to the clinic but I have been able to shift it myself.  I was more worried about the fact that it has only become a problem for me to manage for a few days in the last 12 months but she ran with the constipation idea and is ready to now hand me over to the IBS clinic because the blood tests from Xmas showed no elevations and thus no IBD again.  This is good but does not explain the pain in my side except in terms of faecal impaction lumps. There was no further discussion about my burning mouth.

I used the Movicol but all I got was a moving pain and I am pretty sure I was backed up then which is why I was so ready to believe that it was the answer to everything.  But even after I had passed everything on the second day I still had random pains along with this pain in my side.  I felt some relief of pressure though but I wondered if her suggestion to take this stuff morning and night for 3 weeks was going to cause problems with diarrohea next.  Sure enough, it did so I stopped taking it after going through a lot of pain that I still think is from whatever is going on in my right side or else I am still bruised from a faecal impaction.  I guess I can't be sure but when all is said and done I still have the pain.  I have had nausea and hardly eaten.  Tonight I had a proper meal for a change but I barely was able to share any meals with my son S who came to stay from last Friday until yesterday because once again he was in between accommodations.  So for him it is bye bye University City and hello to what he thinks will be more like family life with a counsellor called Pam who now has 2 boarders in her unit in yet another resort-like complex with tennis courts and a pool.  He has signed a 12-month lease.

Dr Mark has tested for a few things - vitamins and lipoprotein and the results were unremarkable.  It is good about the lipoprotein being OK because it is an indicator of heart disease.  He said on the first visit that I was low in D3 according to my past blood tests which he had faxed to him and after looking at it all he said he also wanted me to take Zinc and Iron.  I quit the iron when I knew I was getting constipated after buying it from him but I have kept up the other two despite my poor appetite.  Today I got a bill for the pathology tests and I was expecting them to be bulk-billed.  It seems some of these kinds of tests are not covered.  He has ordered more tests after listening to a bit more of my history today.  It is going to take ages to cover all my problems over the years compounded by my forgetfulness.

I cannot go on about it now but I have also become very teary in the last week.  It too coincided with my boy's stay here but continued today.  I really felt like I was having a breakdown but I have been so despairing of no-one ever going to be able to help me.  It is all just theories and no-one seems to want to treat the M.E.  They are always looking for a "better" explanation yet it explains most symptoms I have, except for this darn pain in my side.

I am really sorry that I fell apart this week because I have been devoting all my energy to holding it together and I had nothing left to even focus on my sister's birthday today.  I have spent a lot of time in bed.  I didn't even send a card but I had one here ready to send...so Happy Birthday sis and I hope that this year is the beginning of a new kind of stress-less life out of the rat race.