Wednesday, May 25, 2016

I feel like I have been dismissed again #millionsmissing respect and dignity

Many of us feel that the establishment has often silenced our perception of what is happening in our bodies.  I felt like that today.  I went to the doctor.  My lady doctor.  I felt too ill to go but I hoped my note would keep me on track and I had run out of pain killers so I had to go before I would go into withdrawal

I had no wheezes or sounds in my lungs so I guess she did not believe me about months of that.  But I did tell her the Rhinocort worked.  She did not seem to object to me using it again but it is no longer available on prescription.

I told her I felt feverish, she did not take my temperature.  

I told her I had a sore throat and that they had Crimson Crescents (see previous post for photo).  She said they were normal and that it is lymphatic tissue in that area.  In fact my whole throat is normal  (even though it is sore and I cannot sing any more).

I told her that it hurts a lot to lift anything with my right hand.  She did not comment when I said I wanted to talk mainly about my mobility today.  I guess I told her I was getting breathless and/or dizzy but I can't really remember about that.  It was pretty obvious there was something wrong with my walking but she did not even ask what was wrong.

I asked for the neuro surgeon report but she said it was marked confidential but she could read it to me.  I let her read it, waiting to hear the words he spoke to me - that the arachnoid cyst on my spine is the initial cause of my leg pain and the pain between my shoulder blades.  It was not mentioned.  No wonder GPs get a false impression.  The letter came across sounding like I had gone in looking for spinal surgery and was recommended against it.  It was me who baulked at the idea of spinal surgery and asked for a delay.  All he said in the report was that a review MRI in 12 months was suggested.  I paid for that private consultation and I am concerned about the strange sensations I get around my back and rib cage, from tingles to itches to stings especially back right.

I told her I had palpitations when I walk and that I was taking Deralin again to help which it does.  I asked her if I could put up the dose because they are bothering me still.  She did not answer that but I think she went to consult her computer. She certainly did not take my blood pressure.  She did not give me the OK to put up the dose so if I have a heart attack you take note of this.

I told her I felt very ill, that running out of energy could make me feel nauseous and that I was seriously considering getting the mobility scooter back.  She just accepted that without comment.  I asked for a Parking sticker.  She did not answer but she asked about where the scooter was.

Why do you #putoutyourshoes on May 25th?
I told her I was really ill and am no longer able to recover from an outing and more or less begged her to do something.  She asked what.  I told her I thought I needed antibiotics and she said there was no indication for that.  We talked about negative mycoplasma Pneumonia blood tests being unreliable and I got a bit narky and so did she.  I did not back up anything I said with the findings of Dr. Kazuhiro Matsuda because I could not remember his name to tell her.  Do you know how hard it is to think fast when I am like this?  I am finding it impossible to even stick up for myself.  I am just as likely to go into a trance and stare for a few seconds.  It happens all the time...before I went on pain killers too if you are wondering.  

I asked what I could try and then suggested steroids. She said something about my steroid use in the past and said things are different now and I couldn't have them either but then she asked ME how much and for how long do I want them.  How would I really know I thought to myself?  I was grasping at straws when I said 5mg a day for a week.  If I was being treated for Crohn's as in the past I knew it would be a whole lot more.  But she agreed to it being an appropriate way to treat this relapse.  I don't know why.  I also know she would not have suggested it if I hadn't have broken down and said "what am I going to do to try and get better?".  I am just hoping it gets me well enough to make it to the pain specialist next week.  Why do I have to fight so hard just to try and maintain what quality of life I have left?  The nightmare is getting worse Mum.

I told her I needed a diabetes A1C blood test because I was overdue.  She asked what my blood sugar was like.  All I could tell her was that it was 6.4 when I took it yesterday half an hour or so after half a breaky biscuit.  It seemed like fine figures to me but then we got into another awkward discussion about patient blood glucose monitoring.  The Australian Doctor magazine suggested that those with diabetes 2 who are not on medication should not even monitor the blood sugar level at all let alone daily.  I did not want to tell her I read it on the official doctor mag so I was vague with my reply about the Internet but I told her Dr Craig did not want me to have a machine.  She obviously disagrees with the AMA and does not even know it!!!  I disagree with the AMA in that regard too (and plenty more).  Anyway I have not seen a high reading for months and months so I am expecting a good result from the quarterly average.

Look what got published since.

Dr J had a go at me again for going to too many doctors - meaning the one down town that gave me my results for the lung scan and my LLMD (in Maleny she still says) who I have not seen for years now.  It was mainly because she did not remember what I was talking about when I brought up the lung nodule and she used that as an excuse for not having an answer on the tip of her tongue about what this lung nodule is in need of.  I told her I need a rescan because I was due for it.  She blubbered about not ordering the original CT (hi res) so that is why she felt out of depth about it but I reminded her that she said she would have her records up to date about it twice now. Otherwise I could have got into see Craig sooner.  And for the second time I asked her if she wanted me to go back down town to the original doctor?  She said no.  I then looked at her in the face and said "None of this doctor stuff is my fault". No more said after that.  She looked up the records and wrote out the referral I needed.  I am not planning on making an appointment at Pacific Radiology until I feel better and next week may not be good because I have got two things on already.  One is the pain specialist and the other is a social work visit.

And I have to fit in poor Connor who has a belated birthday present for me and who I had to stop from coming due to his virus and my relapse.

Fukuda vs Canadian vs International symptom variation confounding research efforts.

I had to walk further than I thought today because the local QML was conducting a procedure for the next 45 mins and they suggested going further up the road.  You could have walked.  I took the car.   There were other blood tests and a urine test but not the NK cells or CD57 that I mentioned other people were having.  She did not put them on the form and by the look on her face I would say she thought it was over the top.  What I saw were just blood tests I have seen done on me over and over but then are ignored anyway even if I do have elevated liver enzymes or something.  However she said I had to have that blood test before I started taking the prednisolone I think it is.  I know from past experience that it will be likely to cause insomnia but hopefully only because I have a false sense of energy which I will have to be careful not to spend until I need it to get to Dr Georgius etc.  I plan on doing as little as possible but I hope I have enough real energy to get groceries and other essentials.  I'd like to dye my hair.  I still have not got my birthday hair cut though so I hacked my own fringe (too short).

My temperature was only 36.1 this morning but it was only 8 degrees C when I went out to post your birthday present Mum.  37.4 last night. 36.8 right now.

Update: June 2nd - All blood test results labelled "No Action Required"

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