Thanks Kids You Rocked My Friday Night!

This past Friday having had a good day all day when my husband came home from work I told him I was restless and wanted to go out even if it was a short walk around the block.  After he rested for a bit we went out for our walk and seeing as I was still going okay even though I had a slight scary moment as a  Harley went roaring by and caused me to wooble like a weeble he asked if I would like to go to Applebee's for dinner. 

By the time we arrived at the restaurant it was 830PM thinking it would be good not too crowded and thinking families with little ones would be finished, I was more than happy to go on a little date.  We sat first at a booth which we had to move from as the straight back was starting to hurt my back.  Moving to a table and a new waiters section we ordered drinks and had just taking our first sip when I heard the subtle voices of children but nothing too alarming nor did I realize what impact these little ones would have on me we ordered our food. 

As we sat waiting for our food,  the children I could hear but could not see were getting that bored and restless sound, plus it was getting late for the age they sounded to be but surely the parents will settle them down I thought to myself and they are just being kids.  By the time our food arrive these wonderful children had kicked it up to the notch of being left in a playroom on their own.  Now I know before some people think well Heather you don't have children and you are right but it's never too early to teach children how to behave especially in certain places such as a restaurant that doesn't have plastic seating...these kids where now totally out of control screaming and picking on each other like children do when a parent is not around but the parents were sitting with them, allowing them to carry on and they were getting louder and louder.

Chris is looking at me and knowing what is coming on gets the attention of the first waitress he sees to  ask if they could please kindly ask the parents to settle down their children... he no sooner explains to her in a condensed version what is starting to happen to me it's too late I am suddenly gripped with a full body spasm.  As Chris is working on keeping me from falling to the ground in the middle of the restaurant without hurting myself.  The waitress  spring into action getting her manager over to the table with children, and what then suddenly felt like the entire restaurant  went dead quiet I catch a glimpse of the other staff and those sitting around us looking with absolute horror on their faces as I am in full spasm and trying to calm my body down, crying not just from pain but from the humiliation and frustration of this happening on my "I'm having a good day let's go on a date" date. So much for a good day. 

I commend the staff for their thoughtfulness and quick action. Even though we live directly across the street once an hour had passed and my system settled down enough for me to be left to my own devices and the calming voice of the waitress I learn was Natasha stayed with me. Chris went home and got the car to drive us for the long journey home... across the street.   

Friday date night literally came crashing to an end...thanks kids and to my un-medicated and un-diagnosed Stiff Person Syndrome!?

You Make Me So Very Happy

I mentioned in a post a while back about how important having a support system is to someone who is either chronic or terminally ill.  As I also mentioned if you want to test a relationship you are in that is defiantly the way in which people in your life will be tested, it could be a spouse, a family member, a friend or even someone you are dating.  You may be surprised to find that those you think you can count on will distance themselves and those you never thought would be there are.

This past week we decided to take a trip as many of you may know just a few days down to the states.  Not earth shattering but to someone who is housebound for many days in a row it was like taking one of my more exciting holidays I took such pleasure in going on when I was better.  We also brought my mom who is 84. 

Imagine you taking on this challenge that my husband has, he is going to take me who we had to wait until the day we left to be certain I would be well enough to sit in a car for any length of time and an elderly person who also has also has hard time walking, can no longer see very well nor is their hearing very good.  I knew to some degree how mom's hearing and sight were going but being together for a week really made me realize by how much, and as always I am grateful to spend time with her when so many of my friends no longer have their parents in their lives. 

Would you or could you take on a vacation like that?  I watched my husband  all week with a profound sense love and respect and questioned myself if I could I if put in that position? We all like to think we could or would but I wonder how many really could if put to the test...I think you would be surprised by how many could not. My husband works a very stressful job (like so many today in our world) and was willing to take on a less than restful week with two people who can't do much for themselves, because he knew how much we needed a break from sitting in our homes.    

We had a lovely time as you saw from the few pictures I posted if you saw them, what you did not see was the striking pose we made walking both mom and I with our canes and Chris walking between us to be sure on one side he guided my mom because her sight is not that great, and the other hand free to grab me at the waist to stop from falling over.  That my friends and family takes a different type of person in this world one that is hard to find and I am so thankful  that I have been blessed at the right time in my life to have. 

I do hope you all have a rock in your life you will never know when you will need that person.  We all think like I did that it will never happen in your lives but statistically speaking in my small circle I know or have known many terminally ill or chronic ill people and know how quickly our lives can be changed in an instant.

One conversation when Chris and I were sitting out on the balcony of our hotel and I told him how much I appreciated all he did for mom and I to enjoy a little get away, he said it was nothing and how could he not for  two of the people he loves that are in his life.  He turned the conversation around and started singing to me You've Made Me So Very Happy, how can a girl not fall for that and I in turn feel the same:

Think to yourself tonight could I take a holiday on like this or spend every weekend off from work to help those we say we love and would care for when healthy, but will only be challenged if our loved ones health was to change on a dime....I hope the answer is yes.

My Body...My Tormentor

How much more can I take of this torture as my body fights this unknown enemy and torments me more and more each day?  This question I keep playing over and over in my mind as this weekend passes us by.  While others are being tormented by the storms passing through our province I have been weather my own storm my body attacking itself this weekend.

I was hoping it would be a one day attack those I can handle, but for some reason like the storm passing through our city it seems to have taken hold and not want to release in a timely fashion.  I woke up with little sleep on Friday morning in terrible pain maybe like the storm brewing my body too was getting set to begin the perpetual cycle of torture it had in mind for me this weekend. I could not get comfortable no matter where I sat or laid and before I knew it my back was spasming and my legs again stopped working.  As always my mind said to itself this will only be for a short time. I took one of my coveted diazepam's that doctors are so worried I will be come addicted to and will not prescribe any more to me until they can re-diagnose my condition and prayed that it would take away the pain and spasming.  Lucky for me after an hour it did make me groggy enough to fall asleep for another short hour.  As I woke up and went to get off the couch again my legs gave way and down I went crawling to reach the bathroom and praying I could find the strength as I was alone I did manage to pull myself up.  I then slowly and very unsteadily made my way back to the couch and took another pill realizing that the one had done nothing to ease the pain or spasms gripping me. I stayed in an awkward position on the couch until hubby came home from work being too weak to move and unable to stop my body from twisting.

I know I have mentioned before how wonderful a husband I have but I have to say it again.  Seeing how poorly I was and could not find a comfortable place to be, and having such trouble walking I asked him if he  would be kind enough to rearrange the living room and bring out the air mattress we use to use for camping that seems now like a lifetime ago for me to lie on. As always without hesitation he did sets me up with a bunch of pillows behind me using the couch for support a drink beside me and everything else I could need to be able to watch TV or read.  It was great until that dam mother nature called without thinking I tried to get up but could not my legs just would not function Chris came running as he heard me and helping me up then walking with me we made it....even with all this happening we both joked it's times like this I am glad we don't live in a house that has other floors or a long walk to get to where we were going as this venture took me a good twenty minutes when it should take 10 seconds tops. By the time we went back into the living room I was in such pain that Chris wanted to take me the hospital but I refused saying what for? As always I will wait 10 to 12 hours waiting to be seen  only to be told there is nothing wrong with me and sent home I have played that game for many years with the same outcome.  I asked him to give me two more of my prize possessions and I will try and get some sleep propped up the way I was on the mattress and for him to go bed.  

I woke up from a few hours sleep if that's what you could call what I had to catch the morning breaking into a new day, still not feeling good but at least my legs were working better than the day before, meaning with a lot of work on my part I could walk without needing Chris's help.  As the day progressed I knew another commitment we had planned weeks before was going to be cancelled on our end not because I didn't want to go but I knew I was in no shape to go.  I no sooner sent a text to my friend to tell her we could not make it than my muscles began some of the most violent spams to date.  They were so strong and causing me so much pain that Chris called an ambulance after watching me for 30 minutes and my being unable to answer him with no end in sight but as always by the time the paramedics arrived  they had subsided enough for me to able to talk again. My speech was weak but I was able to catch my breath and talk to them.  They took my vitals and said everything was normal and did I feel the need to go to the hospital (loaded question to someone who has lost all faith in our medical profession)....now a little voice in my head said go but the other part of me... the one that for years and years has been in and out of the hospital said don't bother you already know the outcome and that voice won. Looking back in hindsight maybe I should have as Saturday night was a non-stop fun filled night of wave after wave of  spasms and had I'd gone in maybe just maybe they would have believed me and had someone in the medical field seen it 1st hand would they have done something more to help me I don't know and that opportunity is now in the past.

Sunday and now into early Monday morning I'm still feeling the effects and although my spasms are not as frequent nor as violent as Friday and Saturday my body is weak from the beating it took.  Which brings me back to the question how much more can I take of this and how can I survive knowing the next neurologist I see is not until October?  As for my coveted prize pills which help a little for I can't take a large enough dose to truly help me in anyway dwindle away am I going to be forced like the addicted junkie they are making me feel I will become if they give me more need to go looking for them on the street? This past weekend also makes me wonder will I ever get back my faith I use to have in our medical profession and will I be able to  take up the offer to go to the hospital when the need arises instead of watching the worry and pain cross upon my husband face? I pray these last few days are it until October could you who read this hope the same.

 I'm still trying to find the bight side of this crazy ride...it is a long weekend so I'm hearing... Happy Canada Day and to my American friends Happy Independence Day!

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.