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pages under my other links, on this page.(UPDATE I HAVE REMOVED THEIR PAGES AS THEIR FUNDRAISING CAMPAIGNS ARE NO LONGER ACTIVE, DUE TO NOT BEING ACCEPTED INTO THE STUDIES)  You can also donate to the Stem Cell Foundation.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

Simplicity, Patience and Compassion

I have been blessed as I've mentioned before by those who reach out a hand to offer help, an ear to listen, a hand to hold or arms to surround me in a loving embrace.  I hope all of you will treat everyone you encounter in your life the same way those precious few in my life do.

As for the quote above these are my interpretations in those lessons which not only effect my life but anyone and everyone who touches my life too.

Simplicity: the definition is the quality or condition of being easy to understand or do.

• Looking out the window and just enjoying the beauty I/you can find in the moment. Everyone in this busy world of ours needs to stop and do the same.
• Watch children play...remember how simple life was and it still can be, take the time at any age you are and play like a child again.
• Watch a child discover something for the first time see the wonder and joy on their face...learn to do the same as an adult, not one of us knows all there is to know, and knowledge simply does bring wonder and joy back into your life.
• Watch the joy and excitement of a dog out for a walk....they find joy in every tree, piece of grass and people they encounter we as people can learn a lot from watching a dog out exploring the world. (sorry cat people I've only lived with dogs...but I'm sure you can learn from cats too) 
•   I have many people I know who are fighting their own battles and rather then beating around the bush I'll come right out and ask how are you doing?  See nice and simple no hidden agenda and I do ask because I care.  Don't ask if you truly do not care, we all know when someone is not being sincere.
• I have no hidden agenda if I don't know or understand what you are doing or being the way you are I will ask, and others need to start doing the same. A lot of misunderstanding could and should be avoided by keeping it simple.  Why has our world become so guarded and people have become untrustworthy? The answer is simple people try to project to us a world of make believe that they think makes themselves look better,why?
• Be straight forward with me/others in your life and I/they will be also.  I have often had problems in my life due to being honest and straight forward but I will value you more if you are the same to me as I am to you. I/you may lose people in my/your life because you are straight forward and honest and I/you will get hurt but I/you will move on and be stronger then before. I hope you can live a more honest and straight forward life too, you will learn who you can count on when times are rough or troublesome....everyone will have a battle they need to overcome at some point in their life, don't complicate it by not being true to yourself and everyone you encounter...keep it simple, you are not perfect nor am I or anyone else on this planet.

• Patience: the definition is the capacity to accept or tolerate delay, trouble, or suffering without getting upset or angry.
• This one is a hard one to work on and for myself I struggle with it everyday. But if one thing being home for almost a year now has taught me it's this one.  I am no longer angry at the medical professionals who would not believe me something was wrong, who knew it would be something so rare. 
• Be patient and kind always, I know we hear this all the time but you never know what people truly are battling in their lives. You may not think it is a battle worth worrying over for you but that does not mean it isn't a huge battle for them. Do not belittle someone else because you think it's trivial or less important than the battles you are facing.
• Be patient and kind to your parents regardless of  how you think they did in raising you, they did the best they could... you may one day, if you have children find the tables have turned did you raise them perfectly, probably not. There are no perfect parents only perfect moments.
• Be patient and kind when teaching a co-worker, a child, a friend or a family member....people forget quickly that someone at sometime had to teach them how to do what knowledge they are now passing on. (I struggled with this one too for a long time and wish I could turn back time but I can't so anyone who I did not show patience too please forgive me, I will do better with the next person)
• If I could go back in time I would have more tolerance and patience with a co-worker(s) now knowing how sick I was/am I can understand why I had a short fuse when dealing with them, and I hope they understand too and would have patience and understanding to realize you were dealing the person that was struggling to make it through the day and not the person that I know I am.

Compassion: the definition is a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

I have, as I know all of you have someone in your life battling a rare illness, cancer, depression, or any other number of illness you can think of. Someone just lost a loved one (human or animal). We certainly cannot forget about the old and lonely. 

Here is a message to my friends, family and strangers who read what I write:

If you have someone in life who fits into the categories above (and I can't see how you cannot) but you're thinking I don't need to reach out to them because I am too busy in my life, (maybe even healthy and still fairly young) they won't realize that I have not; I hope you will never need support and compassion but I'll tell you a secret.. you are fooling yourself if you think that day will never come and you too will notice who was there for you and who is not. I hope they make it up to you before it is too late, and I hope you do the same.

As for me, if anyone I know needs someone to talk to I am here for you, I cannot take away your pain or loneliness but I will be an ear to listen or a hand to hold to let you know I am here for you now and not when it is too late. I wish everyone I love,cared and thought about would do the same.

It Hits Home When You See It In Black and White

My GP's office called me to come in to help my doctor fill out the latest report requested from my insurance company.  Every few months they request a questionnaire to be filled out to see how quickly I can be removed from disability and back to work.  Because I see so many doctors Kelly (my case worker) did call me to tell me they were sending this report to my GP as they know he will receive reports from all the doctors and this will save them  time from writing to each one individually. 

I haven't seen my GP much these days I see lots of specialist but he seems to be out of the equation. I do enjoy my GP he has a wonderful sense of humour and we are able to banter back and forth but this time as I walked into his office and he started to talk to me he was so serious it caught me off guard.  He explained that he started to fill out the form as best he could but wanted to see me he had started to research what they now figured out was wrong and wanted to apologize for not hearing what I was telling him when I first became his patient.  How can I be upset with him?  I was appreciative for this show of compassion and told him he did not need to apologize as we talked we both realized that discovering one has a condition no one in this province had ever seen until  "me that special person walked in the door" ;-) is nothing to be apologetic for nor was it his or anyone else's fault.  I was grateful to him for knowing a wonderful neurologist he could send me to that figured it out so soon. As you know if you read my other posts I had many years behind me of not knowing and misdiagnoses. It was by chance that he was able to have an inkling before I left his office on the first appointment we had.

 We then talked about the difference between a syndrome vs a disease one question I did have and here to clarify the difference for those of you who may have been wondering too is a short synopsis:

The big difference between the words disease and syndrome is how they relate to the understanding of the medical community. A disease is a condition that has a known cause, a fairly consistent set of symptoms, and a quantifiable alteration of a person’s anatomy. A syndrome is a condition where there are a set of signs and symptoms that often go together, but the cause is unknown, and there isn’t always a measurable anatomical alteration. In some cases, a syndrome ends up being reclassified as a disease when scientists eventually understand the underlying cause and full effect. There are also cases where a syndrome is actually the result of a diverse set of different causes.

From a patient's perspective, there really isn’t that much of a difference between disease and syndrome effects. Patients suffering from a syndrome may experience all the same difficulties as people suffering from a disease, and it may be even more difficult for them because of treatments. Many syndromes can’t be cured, so the treatment is usually focused on symptoms only. Disease and syndrome conditions can both make people sick, and they can have a huge detrimental effect on a person’s quality of life.

As we finished filling out the three pages of questions I will share the last question asked: Describe the prognosis and your timeline for functional improvement or resolution of symptoms, and indicate when you will reassess your patient for progress in functional improvement.

The Answer:

Unknown prognosis for improvement or resolution.  More testing pending with neurophysiology.  Unfortunately likely poor prognosis, condition may be permanent and degenerative.

Question to my insurance company...Think I'll be off disability anytime soon and back in the workforce? 

Me: I already knew that answer, and I like how he gives me hope by saying "may be" but it still hurts and hits home to see it in black and white.

Happy Anniversary My Love

Today is my anniversary, four years ago I married my best friend.  Chris and I have been friends since my late 20's and I always valued his friendship and what's even more wonderful today then back then I get to be blessed by his presence in my life each and every day.

My friends have regrets and show such hatred at times towards their ex-husband's/ex-wife's but I don't, had it not been for him I would not have met some of the best people who now bless me in my life and through them is also how I met Chris so how can I hate someone for that gift?

Unfortunately my 1st marriage did not work out and that is okay.  I hold no animosity at least not anymore he unlike the marriage we had, showed me what being in a supportive and unconditional relationship should be like the one I have now.  Another one of  life's lesson is how I reflect on those years and other should do the same I think, let the hatred and hurt feelings go. You did for whatever reason at that time in your life love and cared for that person or you would not have married them, had children with them (if you had children) or have tried to build a life with them.

As for my ex-husband he opened the door for my life lesson I now enjoy...laughter, happiness, enjoying the presence of just being in each others company. One who would never turn their back on our marriage no matter what life throws our way, and I would do the same for Chris.

I had a friend many years ago when my marriage ended and Chris and I started dating ask me...does it not concern you he does not have a house (nor did I anymore,who says in this day and age it must be the man). I lived in a cute house with no love, no compassion or truly caring for that person you are with, so does a "house" = happiness no. But a "home" regardless of whether you own it or not = happiness yes...come feel it in our home.

Does it concern you too that he doesn't have the best paying job.  I had a husband who made decent money with a decent pension plan.. did money and a pension plan = happiness no.  Do I now have a husband who walk through the door and like the first time I saw him walk through it make my heart sing  = happiness it sure does and that is a feeling no amount of money or preconceived security in one's future can buy.

A list of little things that money and owning a house can't buy but makes me fall in love with my husband more and more each day:

From our past before we were married:

• When out with friends you always walked as slow as I did before I knew why I could not keep up with everyone and never made me feel like I was holding you up like my ex did.
• Trying to visit me when we were still just friends in the ICU (I told you after we were together, you could have said you were my husband as mine only came to visit me once, even on the day they told me my sister had passed away...when I question this, my ex said "I had enough family with me, and didn't feel he needed to be there too"...Chris I know would have never left my side)
• Being there for me on the day my dad passed away when I needed someone to talk to and my ex-husband told me we could talk after he was finished at work. You were on your way to work but offered to come and be with me. 

Today now that we are married:

• Allowing me to be the real me
• Listening when I talk about good or bad things happening in my life
• Holding my hand through all my tests that can be frightening if I was going it alone
• Allowing me to cry, as you hold me
• Allowing me to try and do things that both of us know I will regret trying to do as my body betrays me
• Watching my muscles twist causing me excruciating pain and telling me you wish you could take on my pain instead of watching me endure it
• Laughing with me when I told you I explained to our neighbours that you were not beating me when they hear me scream out in pain or frustration (I had a neighbour once ask me if everything was alright at home) 
• Helping me walk on the days I suddenly can't
• Helping me get dressed on the days I suddenly can't  
• Making me laugh through the tears and frustrations of this disease
• Loving my mom like she was your own...and I in turn love your mom the same
• Not laughing at me every time we drive pass the cemetery and I wave hello to my dad when we don't stop, and if I decide that day to stop when we are on the way somewhere allowing me to do so.

When should I stop....never and like the chorus to one of the songs that always make me smile when we sing it to each other:
You're my girl
I'm your man
I don't care if we live in a garbage can
I'm your man
You're my gal
I'm so glad that we are pals.
(Red Sweater by The Aquabats)

To answer the question posed years ago to me when I fell for my best friend I think you now know the answer. See we could live anywhere and have the biggest and grandest house and as much money as there was in this world...that would not = the happiness, love, compassion and caring I now have in my life....material things can vanish in a blink of an eye...but the beauty of a person's soul never leaves until their last breath is drawn...that to me is what makes any marriage perfect, especially ours.

Why Are You Writing About Your Illness?

I have received some great messages from people who offer me hope and encouragement.  But I have received a few messages from people asking me why on earth am I writing about my illness. Should I not keep it private? I didn't realize it was something I should be ashamed about, do I apologize now for discomforting you?  Funny how people judge you regardless of what is going on in ones life. So to those that are questioning why,  here are my thoughts just remember I'm not holding a gun to your head to read it :-).

Why I'm NOT writing my blog:

Do I have funny anecdotes about the funny things my kids have done?  The answer is No
Do I think I have the answers to the meaning of life?  The answer is No.
Do I have an unlimited flow of cash and can travel the world and write about it? The answer is No
Do I care about what celebrities are doing today, and want to write about it? The answer is No
Do I love fashion enough to want to write about it? The answer is No
Do I have political views I feel are worthy of everyone else to have my views?  The answer is No
Do I live in such an exciting city with so many things to see and do the world needs to know? The answer unfortunately is No
Do I have a funny pet, that the world needs to know about? The answer is No
Do I have the best job in the world? The answer is No (but will answer yes too because my job is now taking care of me)

Those are what some of the top blogs on the internet are about.

Why I'm writing my blog:

 Am I looking for sympathy? The answer is No.
Am I making a difference in someone's life that just received news that they have a disease that is about to rock their world. I hope I will, everyone needs to know they are not alone when it feels like you are.
Do you have the strength to endure the challenges ahead?  I hope I show you. you can.
Are you going to have good and bad days? Yes read mine.
Are you going to be frustrated with our medical system?  Yes, and if you live in our province you defiantly will be, just be thankful it's free.
Are you going to be let down by family? Yes unfortunately this one will happen.  Let them go.
Are you going to be let down by friends? Yes unfortunately this one will happen too. Again let them go.
Are you going to be amazed by the ones you thought would turn away from you but don't? Definitely and treasure them you will learn how precious and few they are.
Are you going to be amazed by the outreach from people who you don't really know but offers their help and support? I was and hope the same happens for you.
Are you going to thankful you wake up each day? Better to be above ground then below don't you think?
Are you going to cry when alone?  A lot make sure you have shares in a Kleenex company :-)

 Every one of us at one time or another will either be faced with an illness or will have someone close to them that will face an illness. When a person gets ill they have two choices wallow in self pity or stay strong and positive.  I'm opting for the strong and positive it's my nature....which is also why I write about it, and if I can help one person stay strong in their own struggles then I have done what I hoped to achieve.  

I hope this helps explain why I'm doing what I'm doing if this doesn't help those that question me then kindly remove me from your life, and stop reading what I write...I'll be okay without you...and it leaves space in my life to treasure and help those I can.