what to expect…
April 13, 2012 at 5:38 am
I have an upcoming SSI neurology exam and am not exactly sure what to expect. One I had over a year ago didn’t go the way I expected it to go…the guy was a jerk first of all and then as he recorded his notes into his tape recorder and had me do things (pushed me to complete the tasks even though I had trouble and said so), he reported that he “found no problems”. I didn’t know running down a hallway was part of an evaluation, but I did try to at least walk faster than I thought I could while he snapped at me to run as if the building was on fire and my life depending on it. I turned and told him that if that were true, he better just go on ahead of me and call it good because I was going to be the last one out. Anyhow, will this exam be like one where they test reflexes, sensations, movement, etc? Is that whole run like you mean it over the top and not normal?
I haven’t gotten to see a neuro of my own yet because the appt I had a couple of weeks ago somehow got changed (they swore to my primary care that they spoke with me the friday before about rescheduling an hour earlier. BUT there were no calls logged on our phone and I would certainly have written THAT down because of how important it was!!) and now I can’t see that doctor until June, unless my primary care doc can get me in to see someone else sooner. I want to ask about autonomic involvement because of the symptoms I have regarding that, possibly a small fiber biopsy, and of course a nerve conduction study to compare it to my other one 5 years ago.
I did get the Mental Capacity paperwork filled out with my counselor and he noted that there are definitely some marked areas that would keep me from working even part time. I will be getting the Physical Capacity filled out next week by my primary care doc. She is very aware of how the GBS and Fibro have affected me and is sympathetic. I am not able to take anything stronger than Flexeril, had to go off of my antidepressants (not having fun right now but it is better than constantly having very very dark thoughts in my head on top of being even more depressed) and need to figure out what to do about that (paradoxical reaction…meaning meds work backwards or make matters much worse). I am hoping with these sets of paperwork filled out in my favor things will move along faster.
Things are so messed up at home. SO and I are no longer really getting along. I am living with him, but that is about it. I have no where else to go and still have one child under 18 and one that just turned 18 but is staying here until January. Not sure if things will work out between us so we are a real couple again, but as of right now things are stressed and stretched to thin between us.
The depression is pretty bad, the pain hurts, and there doesn’t seem to be a break from it. I am trying to refocus and find the bright side to things. Counseling is helping with at least that, but it can’t make the pain go away even I know that. Lots of stress and frustration. Some days I can’t stop crying, others I am trying to push myself and ‘not let this own me’. Only to end up paying for it.
My primary care doc is trying to create a support group for fibro patients and is hoping to include a water workout class at our local Y as well. Hope I can figure out how to afford the membership or the classes or whatever it takes to be able to participate. If I am able to go, she can write an Rx and that should help with costs and such we hope, I think it will help with refocusing and also focusing on myself in a positive way.
Most days I feel as if I am falling apart. And if this Exam is anything like that last one I think I will have to have a serious heart to heart with this doc and let him know I am a human being and I am not making this stuff up. I don’t know who would want to!?
Sorry to ramble, just feeling a bit lonely lately.
thank you in advance
Fairly Odd Mother
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