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.

Girlfriend Are You Sorry You Asked How I Am Today?

I hide from the outside world fairly well my sad/bad days, I have told myself many times that no one wants to hear the bad days Heather, they want to hear the upbeat and positive side that everything is going okay.  No one including myself want to face illness and for certain no one wants a reminder of their fragile mortality.

A while back a friend called me like she usually does on a Friday before she heads out of the city to her lovely home in the country for the weekend.  I almost didn't answer the phone because I was having one of those very down and bad days that I try very hard to hide from people.   But through my tears I mistook the number for my husband only to be startled by a voice that was my girlfriend.  I tried very quickly to remove the sadness is my voice but my friend was quicker than me and realize something was wrong. 

But then like a light bulb going off in my head I thought this is what people who are close to me need to hear. I do struggle with an illness every day, some days are brutal like the one I was having when she called.  She asked what was wrong (possible a big mistake on her part the flood gates opened),  I explained through my tears how I had been stuck in my chair being unable to move for the last hour, my muscles were constantly twisting and causing me the most agonizing pain.  I had already drank the drink I poured when I first sat down for my day, I was getting hungry and knew I had to wait another 6 hours before my husband would be home from work to help me, and any person I could think to call for help has a job and would be working. I am trapped sitting in a body that is not allow me to move, god forbid if I had to go the washroom, I'd be doomed. I was frustrated and emotionally drained by the time she called.

Why is this cruel illness happening to me? 

      

That is a lot to lay on someone at work calling to wish you a happy weekend!  I told her sorry if you can believe it I did not mean to lay my problems on her, ironic words as I write this but that was how I felt.

I also know how hard it is for someone who does not deal with a chronic condition or live with a person who does...words escape what they can say when being told all this.  Bless her she wished she could help me but I completely understood she was not in a position to do so, but thanked her for listening to me and told her to get back to work and forget about my predicament, I'll hopefully be able to move in a short while.  She promised to come visit me the following week and we hung up the phone. 

Finally another hour passed and I was able to get up and at least grab a drink as I headed to my couch to await the arrival of my husband in a few more hours.  One last cruel twist my body had for me as I headed to the comfort of my couch with my drink in hand I started to fall sending my coke flying in the air,  I was left covered in coke not just me but the carpet and my very wet couch which was to be my sanctuary, unable to help myself I stayed that way until my husband came home.

My knight in shining armor came home to the rescue and cleaned up the mess.

Like a fairy-tale ending...