Appreciating The Little Things Each Day

A week or so ago a person in one of the online support groups I joined ask an interesting question... how do you stop mourning your old life and find a new one?

 Interesting question hard for those with an illness that prevents one from freely going out depending on how our body will react to the outside world and changes daily.  I think harder yet for someone who was deemed a social butterfly.  Lucky for me I have always been a bit of a loner and like my home/alone time maybe a little too much for others to understand.  But even for me I struggle with the need to go out and enjoy life versus the realization of what I am able to do.  I also think of all my husband has had to give up.  People don't realize or think about how an illness not only effects the person dealing with it  but it also has a huge effect on their family too.  

For myself I don't think I will ever stop mourning my old life I have learned however to appreciate the glimmer of fleeting moments I receive of my old life.  When we are healthy we take everything for granted I no longer take anything for granted and instead try to adapt to a new life with daily changes to what I can and can no longer do.  At least my life is still kept interesting by the daily challenge to wake up knowing I could do something yesterday and wonder if I can do the same thing today!

I appreciate the few friends who I can call true friends those that have not left my side.  The phone rings less frequently then it use to, the offers of invites out are less frequent as I've had to cancel going out too often at the last minute.   But I appreciate those that do call and invite me/us as they understand what those calls mean to me. They also know I don't cancel because I want to but because I truly can't that day, and it has nothing to do with them.

I appreciate the days I can sit at my computer and connect with the outside world and to think that this technology age only came to be a small time ago.  I have connected and met people who know exactly my fears and frustration that years ago would never had been possible.  There are no support groups one can go to for people with this neurological condition as it is so rare that even the doctors can not make their minds up if you do or do not have, as you have read in my blog.  But I will never loose faith that I will hit upon the right doctor.  Another glimmer to never loose hope even in my darkest days.

I appreciate the days my body allows me the opportunity to go for short walks like we did a few days ago to the park I may have moved slow and a bit unsteady but it was freeing to walk and be a part of the world.  I paid for it later but I would not have changed one minute of our time spent together.

I appreciate a good laugh and lucky I have someone in my life who has the same sense of humor as I. Even on the days he has to help me do simple things like walking when suddenly my body decides it doesn't feel like walking... as he holds me in his arms I've asked him  jokingly to put music on so I can pretend that we are dancing as I really am only do this so I could trick him into dancing with me, as we do the most awkward moves towards my ultimate goal at that moment.  So You Think You Can Dance have no fear of us winning, but we could give you a good run for your money with moves you could never copy.

I miss not being able to cook up a storm and having people over to" break bread with" as the saying goes.  My days of entertaining like I use to are pretty much over but once in a while my body will allow me the small joy of preparing at least part of a meal.  And I appreciate those moments.

I appreciate getting to know my aunt that lives in Hawaii her emails and the odd phone call lifts my spirits in ways she may not know until she reads this.  I didn't know her well until my mom told her about my illness and she reached out to me.  Thank you for becoming a bigger part of my life and sharing your wonderful pictures.  One day I want to travel again to Hawaii and meet in person that beautiful grand daughter of yours.

I appreciate the moments I am well enough to help my mom.  Those days are less frequent then they use to be, but mean the world to me and to her when I can.  I know she feels bad relying on me more then she would like to.   Even on days like yesterday when the last thing I wanted to do was go out but knew she had to get to her doctor's appointment I fought my own illness and made it happen out of love and appreciation for all she did and does for me in my life.

Those days to me as she gets older are more precious then she realizes and I will have good memories in years to come to look back on and smile when she is no longer on this earth.

   
I may not be able to do a lot of the things I use to take for granted and yes I mourn my old life like the person who posted that question to the group.  I can have very down days that makes even the strongest person want to give in.  However I turn around and rather then mourn my losses in life I put a smile back on my face and continue to strive for the little joys in life.  And that my friends is how I answer the question asked. Every person dealing with an illness that will never go away or get better should do the same.  

 



 











  

My Guardian Angel Is Overworked and Underpaid!

Thank you for saving me again my guardian angel, how many lives do I have left?  I never thought that after my lovely episode on Friday night that I would be silently fighting for my life a few nights later, nor did the staff at the hospital think I was in any great danger when the paramedics brought me in. 

After Friday's little date (if you read my blog about that exciting date you know what I am talking about). On Saturday we actually went out grocery shopping, then on Sunday, not only did we take my sister out to purchase a new TV but we also went to my mom's for dinner and helped her with a few things  around her place... okay my husband did the work...mom and I chatted.  I know it does not sound like a lot but to someone who is chronically ill that is like doing a major workout and takes a lot out of you, but I was doing good and feeling fine.

Monday and a new week has begun nothing earth shattering during the day, but as my husband and I sat down to watch the late news I suddenly turned to him and said I need to go lie down as I was not feeling well....hopefully I can settle myself down enough that my system would not go into a major spasm, I know this feeling well.  About 10 minutes later my left arm started to twist... now I am not double jointed in any way shape or form but that was literally what my left arm did, it twisted like a person that can do this gross maneuver (in my mind anyway it's gross...sorry to those that think it's cool).  The pain was blinding and my husband was trying desperately to get it to straighten out with no luck...and at the same time  trying  to keep it from twisting even more which although he knew he was causing me pain he and I were worried that it was going to snap in two.    A good 20 minutes of this self inflicted torture endured before my arm started to slowly turn itself around,  and although my arm had turned the right way around  the muscles still felt as if they were being pulled off the bone.
An hour later and finally exhausted from  the pain I had endured and  as my prized and dwindling medication kicked in I fell asleep.

 Two hours later and I awoke to that same feeling in my arm of my muscles being ripped from the bone  but only in my bicep muscle.  As I went to get up I was suddenly violently ill...this woke my husband up and I told him to call 911, thinking maybe I have a blood clot in my muscle from the strain earlier that night.  By the time the paramedics had arrived my torso or as I like to call it my "alien love child" had decided to join the torture party.  As the paramedics worked on taking my vitals and see what was going on they were perplex to see that although my blood pressure was slightly elevated, my pulse was strong and was in the range it should be,  I was having no chest pain or shortness of breath except when the spasms hit my stomach they could not understand what they were seeing.  Finally as my muscles looked as if they had stopped they hooked me up to do an EKG,  but could not get a reading as my muscles would start up again and I could not get them to stay still long enough to get a proper reading.

After a bit of a discussion it was decided that they would take me in to the ER just as a precaution but they did not think I had, had a heart attack, but having witnessed my muscles doing what they do, they were worried about the strain that alone was having on my system.   We had explained to them as best we could that I have an un-diagnosed muscle condition that we believe to be Stiff Person Syndrome and  how I was having such a hard time getting diagnosed, with some doctors saying yes and others saying no. 

We arrived slowly but surely to  the hospital,  no sirens no rush to admit me as I was not in immediate danger when we arrived.  I was talking and joking with them and was feeling fine my system was settling down again.  As they are talking to admitting BAM another major spasm hits big difference this time in the ER compared to all the other times I've been..they  had been looking up Stiff Person Syndrome and this time they did start putting diazepam , then they tried ativan in my  IV, hoping that would stop the spasms from occurring they also gave me morphine for pain.  Much later and I am talking to the nurse still sore but the vast majority of the spasms were subsiding. A tech comes in to do the EKG that they have been trying to do for hours as my muscles are calmed enough to not give a false reading.  About a half hour later the doctor comes to see me and says to me and I quote "there are heart attacks and there are heart attacks, you had one but nothing to worry about it was mild."  We will try and get you to another hospital tomorrow or the next day to do a angiogram to see what is going on, with the strain on your system from those muscle spasms you've probably have a bit of damage but it doesn't show as anything major.  Now for those of you who don't know I too was not concerned  I have had a heart attack in the past with a block artery of 65% so I knew what he meant and I was in no distress with my heart (or so we thought) so I knew if they were not worried neither was I. 

They found me a room, had a portable heart monitor on me for the day and night which allowed me to get up and come and go as I pleased.  If anything should change they would see and had me scheduled for the next day to go have a angiogram.  I told Chris to head home and get some sleep as there was nothing more to be done and I was tired and hoped with all these drugs in me I too would finally get some sleep. Later that night my girlfriend happen to call me on my cell which was with me and even came down for a visit and she can tell you I was in no great danger.

Next day I am taking by ambulance to the other hospital and kept getting bumped for my angiogram by more urgent cases.  Finally I am rolled in hours after I was scheduled to hear the doctor say your RCA is 100% blocked.  For those of you that don't know the heart's anatomy let me explain what that means. the artery that keeps blood pumping to your heart on the right side of your heart and also supplies the blood to your lungs is completely block! They are amazed I had no outward signs of any kind, except for the one time of being sick two days before.   As I explained three stents later in recovery and later to the staff back at my 1st hospital I have been in so much pain and distress with my muscle condition that to me it was just another episode like all the ones I have endured this past year especially because they are getting worse.  Only difference this time I listen to my intuition and my guardian angel and did go with the paramedics instead of turning them away like I have in the past.    Why would I do that they asked... because every time I have come to the ER not only this hospital but to  different hospitals in the city I keep getting told nothing is wrong and I get sent back home. Would you yourself not give up (funny no one answered my question).

The outcome is I am home recovering.  I'm still having muscle spasms which now scare me even more than before. They agreed in the hospital that my muscle spasms are definitely a neurological problem,  and at least now they have been recorded by the staff at the hospital who saw them with their own two eyes and saw how violent they are.  They also witnessed and recorded my "drunk walk" the day after my angioplasty due to the stress I think is why that started. 

Besides all the wonderful drugs one has to take so your body will not reject the stents they gave me more diazepam for the month  so I won't run out and to help me with my spasms until I can see my new neurologist come October 22.

When I go will he understand this strange and complex syndrome and give me the help I need?  I am praying so... I don't think I have many lives left and I'm sure I played my guardian angel out last week keeping me alive.

It was meant to be the day I go home my nurse's name was Chris!

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.

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.

Saturday Night Date?

I think St. Boniface Hospital  has access to my exciting social life calendar, twice now I have the wonderful joy of being sent for an MRI on Saturday night like the 1st date I guess it didn't meet our dating expectations so  they have scheduled me for the same time 8 P.M. same place...maybe the 2nd date will be funner than the first?

If you have had an MRI of the brain then I will not be telling you anything new except my prospective of having one performed.

First they make sure you have no metal, in you or on you if you do it must be removed if that option is not possible e.g. you have a pace maker, or any type of replacement which involved metal in your body you cannot go in the magical tunnel of the MRI. (Stents in arteries depending on the type I have learned are okay as I do have one). Not only will the strong pull of  the magnet being used cause any metal to become a projectile that could maim or kill you, but you would also damage a very expensive piece of equipment.

There are many types of scans performed in an MRI but I am one of the lucky ones who's to have a brain scan. And my 2nd one will also involve my throat along with my brain, to see if they can figure out why I'm now having trouble at times swallowing.  The muscles that help myself and every other person on earth do this basic function we all take for granted just stops working out of the blue which can be pretty frightening at times.

Back to the procedure itself.  They lie you down on a bed the size of  snowboard (at least to an adult it feels that small).  At this point I was offered one last time a sedative if I felt I would be feeling claustrophobic (which silly me I declined, had I had know how mundane and how slow an hour and half takes to tick by on this date I would have jumped all over it)  They try and make you comfortable by placing you legs on a pillows, put a sheet over your body, ear plugs are put into your ears, thick clothes are place on both sides of your head so you can not move, you are handed a buzzer like you are suddenly a contestant on Jeopardy, but I'm told it's in case I run into trouble or if you start to go into panic mode press it and they will stop and come help you (and here I thought I'd at least have the chance to win big bucks while I am lying there..boo).... but the best part is left for last... suddenly another cloth gets put over my head and I am told to keep my eyes closed now that all of my sensory have been removed I hear the snapping of the basket that is now going to encase my head being clamped shut. Try to relax I'm told and into the MRI I go...thinking to myself I will never fit into that tube but alas I do.

The first magnetic pull is a weird sensation you have to experience this one on your own folks no words can I use here to describe what it feels like (maybe if I had been a hippy using highly hallucination drugs in the 60's I might have a metaphor but I was only born during that era) .  The machine is also very noisy so I now get why they give you ear plugs I could not imagine what it would have been like without them. I will admit I cheated a few times and opened my eyes not that I could see anything with the blindfold in place but it was my way to break up the boredom like a naughty child playing a game wondering if the "great one of the control room" would tell me to get my eyes closed, but I was never called on it...party pooper.

The 1st MRI I went for I had to lie like that perfectly still for an hour and half, any little movement you make can mess up the tests I was told and who in their right mind would want to do this exciting date again (jinxed myself did I)? They do talk to you once in while from the control room mostly to see if you have not died of boredom or from panic I think to myself, but really it's to tell you how long each imagine will take and to not move a muscle while the image is being produced..

My first MRI was in May, last night I went to my second one and it sadden me to realize how far along in this disease I have progressed.  They barely started when my muscles started spasming out of control from the noise, the first image he told me that he had to re-do as I was moving so much it was not clear.  How to explain to someone again who has never heard of this condition that my movement was involuntary I have no control over what my muscles are doing.  We made it through barely, that was probably the worst 25 minutes I have experienced in a while thank god my second one was only 25 minutes including this time being injected with contrasting dye, I would never had lasted an hour and half like my first one..

Showing my displeasure waiting for my Saturday night date to start

Just a I was about to hit the buzzer to end the game because my muscles were out of control and paining me so bad,  I hear the voice of the "great one" like in the Wizard of Oz that I could hear but could not see telling me we were done and he was coming to get me. It took them 10 minutes to get me off the bed of the scanner and another 10 minutes or so before I could get my muscles to move so I could walk but alas I was able. Another exciting date finished, sorry honey no bar hopping for us tonight just home and off to bed I go.