Your Prospective Versus My Reality

Last week a company who support the not for profit organization I worked for held a charity BBQ.  My friend who works in the same industry as the company holding the BBQ was over the night before and asked me if I felt good the next day and was able to drive,  would I like to join her and her co-workers for lunch she would watch out for me and make sure I had a place to sit.  She also mentioned the girls I dealt with at the company holding the BBQ always ask how I am and would be happy to see me.  I told her I could not make a commitment at that moment but would let her know the next morning if I would be able to attend.

Having not been out of the house for the past few weeks I wake up in the morning with anticipation hoping that my body will allow me a few hours of being able to leave the confines of my home.  My first two hours in the morning are spent  with a heat pad on my neck and shoulders which have stiffened so bad in the night that should I not heat them, the intense pain from any little movement sends my body into spasms overdrive. Then I move it down to my back to loosen up the back muscles to be able to walk as best I can. After that I take a shower and get dressed before my husband leaves for work so he can help me get ready for the day.  (Lucky for me and thanks to an understanding work place they allow him to start at 11AM so he can help me get set-up for the day as I am alone until he comes home from work to help me, once again.) I am having a good morning which means yeah I can leave the house for a few hours to attend said BBQ.  I text my friend and tell her I am on my way.

When I arrive it is already busy and I spend a little longer then I hoped trying to find a parking space which would not require a long walk because the further and longer I walk the more my muscles will start to stiffen and walking becomes harder and harder to do.  I park and as I am walking towards where I had spotted my girlfriend and her co-workers sitting, I run into a co-worker from my office.  She comes flying at my all excited as fear clutches my body I brace myself  for her exuberance in seeing me, she throws her arms around me clutching me in a hug that is starting to send my system into shock waves as I move away and try and not lose my balance as she lets go.  She steps back and says how wonderful it is to see me and how great I look.  I also get the standard  "I've been meaning to call you to see how you are but you know how it is, but I promise once it starts to slow down I will call you".  Yes sure do... and my friends/family who do read this please stop doing this at least to me...nothing drives me round the bend more then the  promise of a call or visit when you and I both know you have no intention of making good on that promise.  If you find yourself getting ready to make this statement please stop and say to yourself am I about to make this statement for my benefit or to make Heather feel better, because it doesn't.  If you don't know what else to say, stop after saying it was great seeing you and I will not think any less of you.  After the exchange of empty promises she says she wishes she had time to talk but has to head back to the office.  No worries I didn't come to see you if you want honesty hehe, if that was the case of why I was there I would go to the office if I wanted to see my co-workers not a BBQ being put on by another company.

Had a quick bite with my girlfriend and her co-workers, say hello to a few other people and leave.  This outing lasted two hours including driving time but to anyone who is ill this was like running a marathon both physically and mentally.  Once home I take a nap because I am so drained, having used all my energy to look and act as normal as possible in front of people.

Now the prospective part of that short encounter with my co-worker.  On Sunday I get a call from my only co-worker who does call to see how I am on a regular bases.  She laughing as she says to me "I hear you look great and may be coming back to work soon?"  Excuse me?  Well a few co-workers saw you at the BBQ and said you looked good so they thought you might be coming back to work soon.  So based on a two minute encounter I am well enough to go back to work your telling me?  Yes, she said still laughing...boy you must be thrilled. I did explain that a person who is sick can have some good moments or days but those times are few and far between.  "Thanks" I tell her for saying that, especially when I decided at 11AM that I would be able to go to the BBQ that started at 1130AM, that is how last minute I was able to decide if I could go or not.

So here is my reality of that outing I started with telling you how my day starts each and every day. As I walked to the table where my girlfriend and co-workers were I had to grab the nearest arm of a person I did not know as I was starting to fall over to catch my balance. My girlfriend grabbed my lunch so I would not have trouble and could just sit and enjoy the company.  She then drove me the short distance after lunch to my car because of the stimulation of the situation was starting to cause my body to go into muscle spasms, and I sat in my car until my muscles calmed down enough to drive myself home.  I had not left my house in weeks besides a doctor's appointment which finally I am told they are getting me into the Movement Disorder Clinic but the appointment is not until October. Should they not be able to help me my doctor is thinking of sending me to the Mayo Clinic to get properly diagnosed.  And then I spent the rest of the day sleeping because a two hour outing did me in.

But no worries I tell my friend, I look so good..... I'll be into work bright eyed and bushy tailed in the morning.

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.

Helping In Memory Of A Stranger

Yesterday it was posted that one of the members of the Stiff Person Syndrome group I have joined passed away. Although I never spoke with Tracy nor had the opportunity to see any posts from her, my heart goes out to her family and friends.  We who are fighting this battle can sympathize and place ourselves in her place and for the family who had to watch a loved one taken far too soon from their lives.

As I have mentioned this condition can be so confusing because of the severity and different stages that neurologist are trying desperately to understand. Each person fighting this condition knows themselves how everyone has a unique set of symptoms and prognoses but we all have a demon bond known as Stiff Person Syndrome we are fighting.  What makes it so hard too, is there is not enough people to do a proper study to understand the complexities and underlying cause other then they believe it to be autoimmune.

They are currently doing studies with Stem Cell Transplant, here in Canada and in other places in the world, but unlike other countries where our medical system is free, (to a degree).   There are many others who are desperately trying to raise money to risk their lives in the hope that the transplant will possibly (I say possibly because it is not guaranteed) cure them.  Two of these wonderful and brave people I have not spoken to but know how desperate their plight has become are willing to take that risk in order to have a chance.  Please see their stories and fundraising pages under my other links, on this page.(UPDATE I HAVE REMOVED THEIR PAGES AS THEIR FUNDRAISING CAMPAIGNS ARE NO LONGER ACTIVE, DUE TO NOT BEING ACCEPTED INTO THE STUDIES)  You can also donate to the Stem Cell Foundation.

The transplant itself does not come without a high risk I have been chatting with a brave person here in Canada who will be the third person to try this procedure in Canada for a chance of being cured from Stiff Person Syndrome.  The procedure itself requires doctors to take a person's immune system down to zero and then rebuild their immune system back with cells that have been harvested and sterilized from their system, prior to starting very strong doses of chemotherapy. Once their immune system has be wiped out they re-transplanted their cells back into their body in the hope it will work much like a new born babies system that is able to fight against germs and pathogens.

The risks as I mentioned can come at a high price from infections, organ shut down and can cause death.  To quote in part Dr. Atkins from the Ottawa Hospital Research Institute (from a news article on CNN) "this procedure is only reserved for  those with only the most severe autoimmune diseases. And Dr. Atkins decided Stiff Person Syndrome fit that bill and was willing to perform the stem cell transplant. His first patient is symptom-free and his second patient is symptom free but still needs to take a few of her medications." Dr. Atkins is cautious about saying stem cell transplantation is the definitive treatment for Stiff Person Syndrome.  The rarity of the disease makes it difficult to find research funding - not to mention participants.

To those brave people who are willing to try for all of us to fighting this disease, I urge you to help if you can. If you are unable to give money please message me if you can think of ways for them to fund raise, so I can pass on ideas to them.

 I was never the type of person to come into the lime light before and ask for help but as I progress in this condition I can't help but feel the passion to step in that light and for everyone fighting this demon known as Stiff Person Syndrome.  And to have been told I would not qualify for the test studies; this is my way of giving back to a community of small but brave people who are fighting for their lives. I don't want to wake up tomorrow to read of another person's passing who lost their battle without hope.

    

Moving Slow In A World Moving Fast

Feeling good today so decided I'll take advantage of a good moment to do a quick trip to Safeway.  For me that use to be a 20 minute journey, from leaving the apartment to the store, shop and come back.  Now by the time I shower (rest,) then trying to get dressed (stop to rest again,) takes an hour to do if not more before even leaving the house and I'm not talking about getting all gussied up before I leave my place those days are done for me. Walking down the hall to the elevator praying no one else leaves their apartment and makes me try and hurry should the elevator comes before I get there.  I pray too that the few last polite people left in this mad dash of a world we now live in is not in front of me once I get off the elevator and want to hold the door for me to enter into our parking garage, again walking fast is no longer going to happen, no matter how nice you are being.

I finally made it to Safeway, which sadly I wish I could walk to like I use to, I can see it from my place but those days are done too, last time I tried I was only just past our apartment before I realized it was a big mistake in thinking I could make that walk. And before you wonder should I be driving the answer for now is yes I am able to, they (my doctors) monitor me and we know one day that day may end too but I'm hoping that doesn't happen too soon I still have 4 years on  my loan I took on my car, had I known what lay ahead I would have never purchased.  And I plan on using it as often as I can on my good days.

Back to my journey, I park in my lovely handicap spot, ignoring the stares as I leave my car looking as normal as I do and too stubborn to use my cane.  Slowly I make my way to the door and as I do this some woman comes roaring up and almost knocks me over as she hurries to the door ahead of me.  As she passes I (not very nicely) said "excuse me," she turns to me and in a raised voice says "I'VE GOT STUFF GOING ON".  Really you have stuff going on?  Imagine and here I am struggling to walk just as you happened  to cross my path and taking too long for a person who has "stuff going on."  I didn't know whether to laugh or yell the same back to her at that moment, as she huffed away from me.

When I got home and as I write this it makes me wonder how did our world become so crazy and hurried, is the world coming to an end unless we all hurry or is there some kind of super human race of life, that someone forgot to tell me about?  Are we so stressed and wound up in this world of ours that we don't have time for common courtesy? When did that happen?  I cannot recall a time back when I moved as freely as everyone else does, that I would ever behave that way to another person? I couldn't imagine doing/behaving that way, regardless of how shitty of a day I was having, when did this behavior become the norm?   Even now as I struggle to accept my new reality in this fast moving world of ours I often catch myself moving aside to let those hurrying to get to where ever it is they find is so important that they must rush to get there, I have made a decision; regardless of how much of a hurry they are in I'm going to force them to slow down, no more stopping and letting them pass, why should I.  If you happen to be behind me I'll apologize now but be prepared as I slow you down, and can feel you getting antsy behind me...I plan on yelling at you I'VE GOT STUFF GOING ON! As I slowly continue on my way.

 

The Ribbon Awareness Debate

The great debate of an awareness ribbon, above is the design that a great group of people who I now have become part of their group and "family" choose to represent our "special" group.

Why on earth was a zebra striped ribbon picked? I and many others wondered?  Anyone who knows me knows I am not an animal print type of person, but when it was explained to us I could not agree with the decision more, and I give great credit to those involved.  What did sadden me about the "big ribbon debate" taking place on the support group website (which happened to take place shortly after I finally joined. which took me some time  to do but after reading posts deciding that I would like to join, to get some answers and talk to others who know what I am going through)(yikes), some of the comments and discussions that I read and had taken place after it was "unveiled and announced" to the group not to mention the happiness that it had made it on the Awareness Ribbon Charts. One of the big factors for our condition is stress which can bring on debilitating spasms so why it became such an ugly debate is beyond me, my own thought on this;  people are people and no group will ever come to a unanimous decision nor can you hope to please everyone. Leaving it in the hands of a small but thoughtful group is how any decision has the best chance of making it happen, or it never will.

Another thought that came to me as I read the comments is some people hold such hatred and anger over their circumstances that they are only happy when hurting others like they are hurting.  My advise for what it's worth; let it go and be happy to wake up each day regardless of how much pain and suffering you are experiencing, every one of us is with you not against you :-) even if you feel everyone and the world is.

Every cause it seems has a ribbon and a colour these days, but ours stands out as rare as everyone that is fighting this battle, don't you think?   

As it was presented:  

“Zebra print represents rare diseases...silver represents our "TINMAN" moments/hours/days, etc...The sparkles represent the "GOOD and GREAT" days we all enjoy...and, lastly, we are 1 in a Million and there is no other ribbon on the charts that even looks anything like this! Like I've always said Stiff Person Syndrome = "STRONG PERSON SYNDROME"! Thank you all for appreciating our official ribbon!”

Many of you who know me know I am struggling to understand such a rare disease where there is not a whole lot of information available nor understanding of why some treatment works for some and not for other and until a "cure for all" or a better understanding of this condition is known, I will proudly wear a zebra striped ribbon, because I am One in a Million!  

For a list of awareness ribbons please see the following link:

http://www.disabled-world.com/disability/awareness/ribbons.php