For starters and every time I am pass on from one neurologist to another I want a quality of life back. That I will hit upon the doctor who went into medicine to help people, not to inflate ones ego. Who listens to patients like me and does not talk over us, we can't have a patient knowing more about a condition when they did not go to medical school now can we! Drop the ego down to a human level you are not God! That is what I really want to say.
My last appointment with him was in November when he took me off of my medication, he also reprimanded us like children because I changed my appointment date even though I showed him my email from my physiotherapist which in part read he would gladly see me in January instead of the end of February if I was doing as poorly as I was doing when J.F. saw me.
Within a week of taking the last of my medications yet again my spasms came back full force and I went from having one to two a day, to having five on good days up to as many as twenty in day. I know this because for the month of December we recorded them (check marked on a calendar) only the ones that last longer then a minute (128 not including the shorter ones) and the reason I bring this up to those who know or can image what a person who has these muscle contraction (and here is where I am going to switch the word spasm which sounds minor to contractions) feels like a life time, that honestly death would be kinder and easier to endure then the pain I'm going through and for my poor loving husband who has to stand and watch me go through or worry about me as I am alone all day when he is at work.
I and my husband also tried to have a conversation with him as to why he yet again thinks I would want to do this to myself or how a person has the will power to make themselves do this to themselves. It's like a bad nightmare that I cannot wake up from, nor would I wish this nightmare on another person who has compassion for mankind.
I spend two days prior to my appointment typing notes, documenting what a week in my body is like, to be told he does not have the time to spend 24 -7 worry about one patient when he has many others he needs to tend to who have real medical conditions. He would not take my notes as it is too much of a time waster for him to spend 15 minutes tops before our next appointment in 4 months to read what I had prepared for him. Really? Am I sounding bitter yes. Have I lost my faith in our health care system that I thought one got into because they wanted to help people, yes. Is my will almost broken...sadly yes.
So to answer the question what do I want here is my list NOT that you have the time to care or want to hear:
Respect me as a fellow human being...the posters in all doctors office's these days say patients have the right to ask questions and has the right to care. Why do you and all the others I've seen not see the hypocrisy of those posters as I sit and wait to see you, knowing the outcome of our 1/2 hour appointment? It also states that the staff will not tolerate abusive behavior yet it doesn't seem to work the other way, you are being abusive to a patient allow someone to suffer.
I want to be able to walk longer then 10 minutes before my muscles start to give out on me and I look like a runner who has pushed their body pass the point at the end of a marathon. Why do you think my physiotherapist contacted you, I was in such bad shape even he could not believe how downhill I was going when he saw me, so much so that he said there was no point in seeing him until I am in better shape to work with without causing me more harm. Do you think I slipped him an extra $20 on top of my payment for my session so he would contact you? And yes I do pay for physiotherapy as the public system would not even work with me once they witnessed what my body was doing so I went private. Would a person who is trying to keep moving really pay out of pocket for help if they were doing this to themselves? And would my physiotherapist not have seen through my make believe condition a year ago when I first saw him and pushed me harder then he does? I picked him because his objective is to help people return to work...which was my goal and still is.
I want to be able to prepare meals, chopping, stirring etc again a person should not feel like they just finished a 2 hour intense workout with a professional boxer doing something so simple. I break down in tears trying, that is not normal especially if you could have seen the entertaining I use to do for my friends and family.
I want to be able to dress myself without needing help. Why again would anyone do that to themselves reminder I am 50 not 2? If I go and visit my mother who is 86 she has to help me put my boots on, that works wonders for my self-esteem. You should try it some time, I'm sure you'd feel great about asking someone so old to help you parent or not.
I want to be able to go out to a mall, restaurant, anywhere but being a prisoner in my home. I cannot do any of those things anymore especially on my own, yet I keep trying because you are making me have doubts am I doing this to myself but then reality hits and I pay for doing any of these simple activities for days afterwards. Even with my husbands help I last for a short of time before my body starts to go so rigid and the muscles start to contract so painfully I can barely move and we need to leave. It has gotten to the point where he goes out and I stay home most times now.
I want to feel well enough to go visit my mom on a more regular bases, although I sit at home most days (except for appointment days and the odd time when I will myself to get my mom out for her appointments) I don't have the ability or healthiness to get showered, dressed, drive and go visit her (if I am lucky I can once in a while but not as much as a person my age should be able) you are robbing me of time spent with someone who I love and the days are getting fewer and fewer in our lives.
Thanks to you I even missed Christmas with my family because I was in so much pain and woke up having non stop contractions that day we didn't dare leave home. Chris and I spent the day debating whether I should go to the hospital or not because I was doing so poorly. Hospital or time with family which would you have preferred if you were not already a doctor?
I want to be able to enjoy a laugh even laughing can cause me to go into painful contractions again is that normal...if it is please show me how this happens to you. You can ask my friends and family who have witnessed this happening. Do you fear laughing? again if this is normal show me you having the same contractions as I do, if ones mind is so powerful.
I want to be able to stretch without starting to scream in pain and going into spasms/contractions. Can you last a day without stretching, people like me have to be aware and conscious of not doing even this normal function. Unfortunately we are programmed to do so without thinking and when I do this it causes some of the worse and longest lasting contractions. Even my sleep gets disturbed because we do this function unconsciously in our sleep and I will wake up screaming...again please do this for me so I can see it happening to you. Heck I'll even take the time to watch your video, sadly I can't say you will reciprocate the gesture because we have tried, and again you don't have time to watch a less then 5 minute video.
There is my partial list to you which was not as detailed as the one I tried to give you, but even that was too much for you. I guess I should be grateful you have given me back some relief by giving me back small dosages of some of my medications. Not to worry I won't abuse them like you and others doctors before are so worried will happen. This is where my ignorance comes in I don't even understand how one does abuse these medications that help them, that is where my ignorance lies. But then again I am not an addict but a sick person needing help.
Oh and as for our next appointment I still have not made it, by the time I left your office that day that you turned your head away as my husband helped me leave your office. I was in such bad shape that my husband had to fight to help me get to the car and home to bed. But not to worry my mind was still well aware that you ego is intact for you and it means more to you then helping a person like myself who enjoys torturing herself and yes she is grateful she is on disability as that is really all I wanted instead of relief from a make believe condition she has decided to give herself.
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