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    June 2021
    M T W T F S S

visit with the specialist, round 2

I saw the specialist yesterday…

I admit that I don’t remember some of the things that were said, it can be rather stressful when you are trying to hold back or control a panic attack

From what I understand, they seem to think I only have 4 of the 11 lupus markers, so calling it a type of lupus but not full blown.

When I was younger (age 12) and all of this was starting… I had so many more of the symptoms but over the years I have been able to avoid being in environments and foods that will trigger flare ups

While I should be celebrating that doctors are starting to label me with lupus, I am not satisfied

I have been waiting so long for this and fighting so hard to get people to listen to me

I don’t want a label, I want an answer and then I want treatments but I will not be satisfied till I have more tests

I need more tests

With my normal (general practitioner) doctor, I had requested to know what my vitamin D levels were. I know that some of my family members suffer from low levels of vitamin D and that can cause a number of symptoms and make health issues that much worse

So it seems my vit D has been low but no one saw fit to give me meds for that or to tell me…

A lot of my tests are slightly too high or slightly too low for “normal” and when the fuck have I EVER been normal!?

I voiced my anger at the twat junior doc I saw last visit to the hospital, that he had failed to know my information and failed to understand that the medication he prescribed to lower my pain… has a number of warnings for people suffering from curvature of the spine, mental disorders (including panic attacks and bipolar, which I have) and gave it to me anyway

I mentioned that I was angry at how I thought I was supposed to have a biopsy on the gland in my mouth but all they did were a bunch of blood tests and an xray of my hands and spine

So Monday they want me back at the hospital for more tests

This time I will have a scan, in France that can mean just about anything and often they use the tag name MRI (ok in French it is IRM) but if you ask them EXACTLY which scan they are talking about…you might just get an answer

So they will have me submit to a PET scan and see what the fun things my brain is doing

I really feel bad for having my panic attacks and for rejecting the idea of seeing a therapist, it’s hard to explain to them just how traumatic it is for me to be with the doctors

For me, it is like being in the same room as a rapist and having to keep calm so nothing happens to trigger a worse situation and they are the one taking you home…

It is really hard

If the doctors in American had paid attention and tried to help me, my mental issues would never have gotten as bad as they are but for all that, I do much better than most to control my problems

I know I can’t always have a panic attack, even though sometimes I need one… there are times when I am not in a safe location or I have others I am responsible for or have to be strong for them

Which makes it hard for people to believe me, it is easier for them to think I am faking it but when you have no other option than to control yourself… that’s what you do

So seeing a shrink, for me, isn’t going to help in this case… not to forget the language issues

I have been studying the mind for most of my life, learning how people behave and why and how this affects me and I have been in abusive and violent situations…

I can’t always help myself but I do try and in the mean time I make an effort to heal others and learn new ways to help myself

So yeah, I am scared about Monday and the tests

But as always

I am more scared that they will find nothing or not enough of something


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