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Control....

I have always admired people who are their own advocates. I mean those people who demand service from their doctors and fire their asses when they don't get the service they deserve.

I'm not one of those people.

I think I was at one time. I think having fibromyalgia for so long sort of killed that in me. I mean you put up with a lot from doctors when you have an invisible disability that a lot of doctors do not believe in or are incapable of treating or are completely indifferent to or treat you like a chronic complainer. Along with societies perceptions of you of course. You sort of just don't talk about it... at all. You sort of just deal with it. Literally I was diagnosed with it and then just nothing. So I assumed anything lifestyle wise, diet, vitamins and coping was left to me. And it was. And treatment wise was their forte but... it wasn't really. There was no treatments really at that time. There were a few ineffective drugs with many side effects they were not willing to give me because I was 'young'. There were painkillers they do not give to people in pain. There were sleeping pills they do not give to people with chronic sleeping problems. That really just left the occasional severe flare up of symptoms... like severe IBS, new symptoms like eczema or whatnot... or the chest wall pain that was misdiagnosed three times. Things like that. And being patronized. And mentioning things and having them say 'thats just FM' and having them be very wrong fifty percent of the time. Do you have any idea how many times I had to mention the symptoms of FM before I was diagnosed? I had one doctor who was seriously looking into the issues as a child but after him... there was one I literally wanted to strangle because of his idiotic assumptions.

Point being after a while you just learn to say little. If a symptom occurs and is mild... do nothing. If it lingers pay attention. If it is severe wait and see. If it goes away... no big deal. If it does not... then go to the doctor. See? That is my mentality. There are literally symptoms I have that I should say something about.. but I usually forget because they are mild and it just does not seem that important. I think they likely are, but I don't want to bog him down with the little things. I don't want to go frequently. I don't want to be a hassle. I don't want to complain. I want to be all stoic and such. Remember that this attitude was cultivated by the medical community themselves over time. I mean I know a lot about fibromyalgia and migraines... I was more than willing to be an active participant in the conversation. They bumped me out. Made it so my FM health was completely on my own activities outside of the medical community... so actually I had all of the control. Can't afford alternative treatments though. And could not do herbal as it might conflict with my other meds though. But anything else... all in my power, just with no guidance on their end and no conversation on their part.

This bleeds into migraines however... into everything. Because it is how I interact with them now. So... when I have a status migraine I prefer not to go to the ER. Because I don't want to make a fuss. Because I know what the treatment will be. And I know it is not an effective one. And I know they will not listen to me when I say it will not be an effective one. Even though I know having a status migraine is dangerous to me... even though I know I have had at least one status migraine that caused permanent damage. When I was struggling severely with my migraines my doctor said he could put me on short term leave back in 2010 and I literally told him not to because I knew it would make my work situation worse... but if I had a doctor I could trust I would have said 'hey by the way, I'm totally suicidal right now... so you really ought to consider a long term leave'. But I don't. I did end up on short term obviously because I did I try to commit suicide. But not long term leave because apparently he did not think I warranted that. Is that because I am that good at being stoic? Maybe. It very well could be. At the hospital I literally was drugged to the gills and made him believe I was good enough to go home. I must be that good. Because of the retrograde amnesia I honestly don't even remember how I did that. Point is, yes, I hold back a lot. On the emotion stuff... hell yes I hold back. Back in the day fibromyalgia patients were completely dismissed by doctors because it was 'all in their heads' or they were just women who 'complained too much or could not handle pain' or they were just 'depressed'... and I worried about that because when I was younger prior to being diagnosed a doctor said I was just 'chronically depressed' even though I had had symptoms since childhood and they had just gotten worse... and it was the severity that was making me depressed. And I had been depressed I'll give you that, for that year anyway. Then my father who got FM later in life after a sudden illness (the rapid onset kind) later got depressed from it and some psychologists try to pull that on him as well, which royally pissed me off. So I fear that 'label' because I fear them putting the label on top. I don't anymore... because I know the depression that I feel is not this constant overwhelming force. It is very much associated with my pain. It is this situational depression. It is like a symptom... or also likely a pre-migraine thing as well, that happens too.

And there is this second aspect about this that doctors themselves create. That is specialists. Where I give my control to them. I feel that I must. Because they present a plan and if I don't agree with it then I am considered 'uncooperative' and not willing to go forth with what he set out. And that going into a report. And that is what my insurance company sees. That I was not willing to do as he suggested. Therefore I have to cooperate even if I do not agree in order to hopefully get my insurance documents I need.

I can't fire a doctor like they do in the states. I can ask my doctor to be sent to another neuro, like my old one... who won't be much help at this point... but if he does, then it will take months to see a new one. And I don't have the time. So compliance for a short term is fine. I don't intend to see him for long.

When it comes to my doctor. I am unsatisfied with him. He is fine but fine is not good enough. There is a doctor shortage here. So finding one who is taking patients is impossible and I should know... thats how I found him. However my bf doctor is awesome and she helped him greatly and I have been very impressed with her from the beginning. Since we are family I might be able to get to see her... when is an issue. Maybe if I start fresh lay it all down and see what she things... maybe I can worth with her.

When I get to the headache specialist clinic I'm on a waiting list for I think that will be good as well.
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