What is Going on With Our Healthcare System?

I never thought looking back two years ago I would be in the place I am today.  Two years ago I was struggling but nothing like I am now.  I was enjoying holidays, working, get together with friends, spontaneously going out and having fun. I had faith in our medical system even with the long wait times I believed I was being treated with respect and by people who truly cared in my health and helping me.  I no longer think that.

This morning I was trying to find articles on our healthcare system in our province. The only articles I could find seemed to be focused on the lack of nurses in our province which I don't argue is an issue but we seem to be focusing on nurses when I want to question our lack of professionals/doctors who are the front line of diagnosing and coming up with treatments for us? Why is it that the focus of our healthcare has fallen on the shoulders of nurses?  They are a vital part of system I agree but it's not their job to diagnose people. After years of having doctors ignore my concerns and  finally finding one who has had me seen by a few professionals/specialists after months of waiting to get in...should some focus not go to this issue too? Why is our wait time months apart?  I guess because they cannot truly figure out my case and not seem to be on deaths door (at least not yet I hope) it is easier to shuffle me along until I give up? I hate to tell them I won't give up and if by my appointment next month I don't get the help I need I plan on taking my case further up the chain.

You all know if you are following my journey how I feel I am being left to my own devises to figure out what is going on and why my body seems to have betrayed me in such a cruel and unusual way. The more I research I know the first neurologist I had pegged it with Stiff Person Syndrome but now that they have taken away the only medication that was helping me I am watching and feeling myself quickly decline and it is intensifying the feeling of hopeless that is quickly taking hold of my mind.  Yesterday I had a short visit with my niece who was in from out of town, she had an accident at work which resulted in her having a seizure and spilling a form of acid on herself as she went down. Since this accident she has had many seizures and it sadden me when I heard her talk as it sounds like a person who had a stroke.  Our medical system that she and I have come to depend on like me told her they can find nothing wrong and maybe it's all in her head. Seems to be a theme here that if I as a professional can't see a black and white answer then it's all in your head. She like I has a tape of what is happening during her seizure but like I, her neurologist did not feel it was necessary to watch it.  Why?  Why does our medical professionals ignore us as patients when we can show they what is happening?  If someone out there can answer this for me I would be interested in knowing the answer to this question.  How can two people and I know there are many more out there rather then being treated being told it's their problem to solve?  Are we lacking the proper training in our province's medical program?  I am beginning to think so.  I pray that no one else in my circle in this province will come down with health concerns that are not black and white for I know first hand the battle you have in store.  

As for me as I told a couple of friends this morning, I would have felt better if they told me I had terminal cancer with a week to live at least I could accept that answer then none at all.  I have also come to the realization should you have a complex case in this city I wish you the best of luck because you are doomed in a self imposed prison designed by a lack of professionals that seem to not exist in this city and if by chance they do... I pray you find them.  And when you do let me know so I can get the help I and now my niece are so desperately seeking.

The Greatest Gift An Employer Has Ever Given Me

One year ago today my career came to halt.  I have worked since I was 15 back then I had to get permission to have a "real job" as I was just shy of being the legal age of 16.  Over the years I have worked for a few wonderful companies and people and I have worked for some places I would prefer to forget but we all have had those.  My current employer whom I am on sick leave with is an interesting place ( I will leave it at that), the only time I hear from them is when they need help and it seems as an afterthought they ask how I am...I just answer their question for help, for if there is one thing I trust it's my intuition and I know most (not all) who ask are not being sincere they didn't care when I was there, so why should I think they do when I am not.

The other day I went to my mom's I still have stuff stored there and we are going through it and purging. One  of the few things I have brought home with me and what made me think of work is the best present I ever received from one of my places of employment that I was sad to leave but circumstances at that time in my life required me to have to give it up.  Due to changes in economic times this company has since closed, but since that time I keep searching for a place of employment like this knowing it will not likely happen again in my lifetime. I do wish every employer could take a lesson from Michal and Barry to learn what it takes to make employee's work feel of value and happy to work where they are. It does not take a lot of money (you hear that all the time from employees when asked)  I smiled and felt as valued today as I record this, as the day I received it. It's worth sharing in the hopes anyone in the business world can see (at least to me) how to show genuine appreciation for their employees and how little it takes:

This is a gift of love. In the LOVE BOX you will find:
Water
Something for your Spirit
Something for your Heart
and Hope for the world.
We would also like to share with you some love projects of our own.
May you keep your hearts open and healthy for 2000.
Much love and respect,
Michal & Barry

LOVE BOX

RAINWATER
This rainwater is gathered from the roof of our home in Dominica. Drink or sprinkle the pure Dominican rainwater on your body and visualize the cleansing of your body and receive good health.

SPIRIT
Sweep this broom lightly across the front of your body as you visualize your spirit in the new millennium. Release the old and enter the new.

HOPE
The only hope for the world is love.

HEART
The giving and receiving of love. Carry these love stones with you. One stone reminding you of our love for you, and one stone to pass on to someone who may be in need of this heartfelt gift.

OUR LOVE PROJECTS TO THE MAKE THE WORLD A BETTER PLACE
"Helpful Hand" guides the younger hand of humanity that strives to learn and grow.  Barry and I, family and friends, and strangers, have contributed clothing, finances, time and school supplies to allow preschool children and grade school children an opportunity - to learn and grow.

GIVING YOU STRENGTH
An extra gift, a circle of strength as you need to help you get through the loss of your sister.

This truly is the greatest gift ever given to me by an employer, I hope you can all feel this valued and loved in your career someday.

Begging for HELP

I know it had been a while since I've written anything, but I have had a major set back and it has taken me a while it to able to digest and think about what I can do about my current situation.  I was not wanting to go this route but maybe, just maybe someone out there will help me or can give a suggestion on what to do.

As ludicrous as this sounds to me, I have been told that they were too rushed in their decision and have decided I do not have Stiff Person Syndrome, however they also cannot tell me what is wrong and I was advised that they may never know. I was never going to show this video public of how I am now walking since they have decided to take me off all my medication , I cannot show the only  one I have recorded when  I'm  having a full body spams as it happened during my getting dressed.  (I will show the video at the end of this post, as I would like you all to read what it is like dealing with our health care system and how doctors treat patients these days).

So I went for my second nerve conductivity test last month, now I am not a doctor but I don't believe as a patient I should feel very confident when you watch a doctor read clinic notes in the middle of a test on how to perform said test.  I know from the research I have found they are to test the lumbar paraspinal muscles in people suspected in having SPS but he only tested the muscles at my ankle and once in my thigh muscle.  Even though my muscles were spamsing throughout the test he said he could find nothing going on.  After he finished testing me he also advised that my GAD test came back normal which I replied again that I read only 60% - 80% of the people tested does this come back positive for.  However based on this he decided that I do not have SPS but could not tell me what was wrong he felt that he could not help me any further and will send a report to my GP.  Nor will he prescribe any further drugs for me or offer advise on what I can and should do next.

I have waited patiently for a month for this report making an appointment with my GP to be told he has not received anything.  When I showed him my video (which my girlfriend taped the day after my NCS and this was how I walked for 2 days after the test until my muscles calmed down a bit, and still walk like this on some days) which he watch for all of 20 seconds he said to me and I quote "I've sent you to some very smart doctors and not to make you feel like I don't think anything is wrong but is it possible that what you have is psychogenic and do you know what I mean by that?". Umm yes and funny all the literature I've read mentions that doctors also say that to people with SPS.  He then proceed to tell me that he was sorry if the doctors mislead me into think I had SPS but if they cannot find anything wrong then we may never know what it really going on.  I asked again is it possible that I have an atypical case and they need to focus on my presentation more then tests?  But he did not have an answer.  He proceeded to tell me to make an appointment in a month when he has a chance to ask for a report from the neurologist and handed me a prescription for anti-depression medication while I wait out the month.  Am I only the one who sees the pattern of going back in time instead of forward?

I have waited years to be told what I have...given hope then I have had that hope taken away in a blink of an eye.  Can anyone help?  I am not crazy nor would a rational thinking person want to do this to themselves and yet I am to accept this as an explanation?  I was told I would be the 1st case in the city or province for that matter is it possible that they lack the expertise to diagnose this correctly?  And yet there is nothing I can do! Does anyone anywhere have advise or know where I can turn to for help? If I am going crazy all I can say is it the doctors doing my head in that's doing it... Not me!  I also need to question  how can any doctor watch a person walk out of their office like this and think it is all a make believe condition?

Please mind the way I am dress and how I look on this day....at times I am a typical girl!

Walking down the hall



P.S. A friend just posted something on my FB page and I thought I would add here what I wrote to her:
funny since I posted this publicly my muscles are spamsing non-stop but hey it's all in my head! I was never one to go so public about my life but I can't do this alone anymore. It has been a long and daunting process and then to have it all taken back like I said it's doing my head in. They ruled out Dystonia, MS, Parkinson's and now SPS and now were back to it's all in my head? I have had some really bad attacks since I have been taken off all my medication but both Chris and I know it's useless taking me to the ER so he just has to sit there and watch me suffer. I just don't understand how our medical system can be this way.