Struggle Street

struggle street

It’s really tough going at the moment, more disappointments and the feeling of being so terribly disconnected from everyone. I feel so very alone. As new symptoms arise I’m so very scared not wanting to put a lot of effort into thinking about it because I feel I could just “Freak Out” in a way that I can’t contain.

It’s always been about stuffing these feelings down low, with the amount of time I have on my hands all day strangely enough I don’t think about this monster much….I just keep stuffing it down down and then one day the lid comes off and I explode in the most inappropriate way.

I have decided that this year my visits with the Psych will be to try and deal with this illness in a different way – meeting it head on. I am absolutely scared shitless but I have to try something different. At this point of my life 2 and a half years in with CRPS I just cannot imagine ever being “OK” with it. I know other sufferers say the first couple of years were the hardest for them – mentally. No part of this is ok, no part of this do I feel in control, managing the day in day out excruciating pain. I do not feel strong or dealing with it well…I feel as if I am drowning…my head making it to the surface for a gasp of air as I continue to flail my arms for help.

The extreme heat is causing more extreme heat in me. My arm is a bonfire with my face not much different….the pain screams all day…in a lot of casesĀ I can’t hear people talking over it…just screams, you can’t focus or concentrate. Taking too many painkillers and I try regularly to try and come down but at this point I can’t manage without them and this causes of course another problem – along with mobility and severe weight issues and why your insides are just not working how they were designed to.

After leaving it for months, I finally wrote my complaint letter to the hospital about the doctor I have been seeing. My last appointment I was assured of another opinion as I have been seeking for years. The doctor I have been seeing – it’s been a nightmare, I don’t know what I did to get on the wrong side of her but every visit is the same hostility, ignorance, aggression. I finally had been lead to believe that I would be have to see her just one more time and then I could see the professor. During the appointment she told me that she didn’t believe that I had CRPS, maybe once but not now (even though the pain gets worse and so do my symptoms – other doctors in this department believe I have CRPS). She believed there was nothing she could do for me as she believed that I had a little bit of arthritis and needed a psychiatric evaluation. After I left the appointment I did my usual ritual bursting into the toilets downstairs and crying my eyes out. My phone rings about 10 minutes after. It is the doctor. She has spoken to the professor and even though the professor has never laid eyes on me she agrees with the female doctor and I would not be getting a second opinion as they have already discussed this (without me being present)

I just cannot fathom how difficult it is for me to see another doctor. One time I had actually been giving a new appointment time with another doctor then someone that I didn’t know rang me back a week later and said that the appointment would not be going ahead.

This morning I was talking with the patient liason officer about my case. It appeared that she could argue my case but in the end it is the professor that makes the final decision and again it’s not looking good. For once I felt that I articulated myself better and not blubbering about it. I thought it was every patients right for a second opinion. If the doctor I have been seeing has been writing in my file things that are just not true…getting much better…very distressed about getting some treatment…how do I get a fair assessment if no one else has actually looked at my arm? I just received a phone call from the pain clinic booking me an appointment next Wednesday with another doctor. I hold my breath…this has happened before.

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