Jun 25, 2014

An Anniversary not worth celebrating... or is it?

A year... Wow...  It's been about a year since that first wave of vertigo hit which started off a whole slew of issues with my body.  In one sense it's hard to believe it's been that long, yet in another particularly on a bad day it feels like my body's been tortured for an eternity.  I suffered through it (the vertigo) for about 5 weeks last year and then it became so bad that I had to stop working.  In fact driving even made me nervous and I only did if I absolutely had to.  I sure as heck wouldn't have through that a year later I'd still be such a mess and I definitely wouldn't have imagined that 11 months later I would still not be back to work.  It's really crazy when I think about it.  But thankfully at least the vertigo went away last fall.

So yes, it's hard to believe a year has passed.  The anniversary of the beginning.  Sadly things have gotten much worse than that initial day as the months went on and there's still there is no definitive answer on why.  Suspected young onset Parkinson's disease and a summer long treatment plan as a tool to use as a potential diagnosis, but nothing 100%.  However, despite the journey being long there are many things to be grateful for and I guess in a sense worth celebrating as this anniversary comes around.

First and foremost it seems I am close to my answers being final, whether they are what I would want out of life or not.  Upon talking to many people with serious health issues it's come clear to me that I am lucky with this time frame.  Yup I said the "L" word.  Lucky because a lot of people go many years without being as close to the fork in the road as I have come.  Although somedays it feels like it's really dragging on I am luckier than most.

I find Joy in the many advocates that have crossed my path on this journey.  Most importantly my family Doctor, who believed in my issues, took them seriously, always tried to make me laugh despite any frustrations, has filled out countless forms and pressed to get me to the right specialists in the right places.  I am forever grateful for him.  I hear many stories of people that are not fortunate enough to have a family Doctor, let alone have one that's remotely as wonderful as mine.  I am lucky.  My physiotherapist who went out of her way to write letters to Health PEI (incase I needed them which thankfully I didn't) to get me off island as it was clear to her I had serious problems that she felt were neuro muscular and needed solving.  A lovely individual named Tonya who's a nurse and reached out to me on several occasions with advice, care and concern and offers to help advocate for me in the journey when I was getting no where fast with Island specialists.  She touched my heart and her loving, caring, genuine nature meant the world to me.  And there are many others from the medical community that have been amazing.

I've learned many life lessons in the past year about myself and about others.  Lessons help us grow into better people and therefore regardless of the circumstance for it I find joy in those lessons.

I have learned that sometimes the people you want the most to be there for you just aren't and that's ok because it teaches you how to accept those disapointments.  Makes you find a way to try and put yourself in their shoes and understand that maybe it just makes them uncomfortable because they don't know what to do or say and that is ok too.  I've learned to not be angry at that but rather try and empathize with it and I will admit I'm still trying to learn that art.  We'll call it a lesson in progress!  I've learned that there are people who just don't give a crap, but yet want to read up on my 'news' but have yet to acknowledge what's been happening despite that they are people that should and that is also totally ok.  Those disapointments and figuring out who really cares sends you on a path to surprises.  A path to the ones that are really there for you that it was never expected and that's a beautiful surprise to get.  I've learned I have a wonderful loving support system and family & friends that check on me often daily and do it because they love me and want to and I'm grateful for all of them.  I've learned that there are many people I have crossed paths with that are beautiful people with many words of wisdom that I can learn from and in turn grow because of.  Some are people I know well and others not as much, but they have been put in my path for a reason.  I've learned that sometimes the most unexpected act of kindness can be very emotional and that it's ok to not be the tough girl who never cries like I once was.  I've learned that everyone has an "Internal Doctor' in them in one way or another.  Sometimes this can be good, sometimes annoying and sometimes just plain ridiculous, but it's usually meant with good intentions and often found with great ideas.  So there's joy in everyone's 'ID attitude'!  I've learned patience.  Boy have I learned patience and most definitely a skill I'm still trying to master as this journey has been a true test to ones patience level in more ways than I can count. 

Most importantly I've learned to find the joy in each day even on the bad ones.  To dig deep and search to find that one positive thing in the day that made that day .  To look forward to the next one to come with a positive attitude that it will be a good one where I can do more.

And on a side note this week I had an Anniversary that doesn't require thought to celebrate!  My wedding anniversary to my very own Prince Wesley (my favorite movie is the Princess Bride).  7 years married, 8.5 together and not a doubt in my mind that my life before him led me to the very specific time and place I needed to be to end up with him for the rest of my life.  This journey of mine would be a lot harder to find joy in if it weren't for him.

So at the end of the day there are many reasons to celebrate this health (or lack there of) 'anniversary' like you would any other.  As this time of year was approaching and I was reflecting on my thoughts of how long it has been I thought otherwise.  However the more thought I put into it the more I realized that in life you can wallow in your own self pitty and hate the bad roads or you can find the lesson's in them, look for the joy along that road and better yourself for it.  Don't get me wrong I have days where I'm just plain pissed off, but I am learning to roll over those rocks until I find the flower underneath one that's not giving up so I can try and shed some sunlight on it so it'll flourish.  Have I mastered this art?  Absolutely not.  For instance even as I write this my left arm has been twitching uncontrollably for over 24 hours now.  This scares me because I worry that things are moving to the other side when everything has been contained to the right so far.  But my right hand is working fairly well today, in fact I was even able to use a pair of scissors.  So as silly as that may seem that's a joyful thing.  It's something I often cannot do.  The little things we take for granted that I now wish I hadn't before.  All part of the lesson I suppose. 
However there are enough positives, enough joyful things, enough gratifying lessons, enough love and support from the people I need it from that have come my way in the last year that it IS an anniversary worth celebrating.  Not to celebrate the illness, but to celebrate the lessons, the love, the little things and the ability to still find the joy in all of it.

I have joy, I am blessed, I am lucky.

Jun 18, 2014

Some days just suck...

Aint that the truth?  And the case for all of us...

Today is one of those days for me, it just sucks.  I'm feeling incredibly nauseous, like the kind of nausea you have when you have pregnancy morning sickness where you don't know if you want to barf or eat a cracker dipped in gingerale.  I'm feeling a bit 'stoned' as well which is an unpleasant feeling.  I know the meds are the culprit of both, most likely this weeks most recent dose increase but it still sucks.  It's also a very shaky day and my right leg is vibrating much more than usual since this new body part has been added to the tremor list.  In fact I went to leave the house today sporting as always a pretty pair of heels (those that know me know I love my heels, I think in my mind I was really meant to be 5'8" not 5'4") but I had not much luck.  For the first time on this journey I put them on, walked through the house, got the baby in the car and quickly realized my legs could not pull of heels today.  I know, some of you are thinking how trivial of a thing.  But it is not trivial to me.  It's not about my obsession, my love of pretty heels, it's about the fact that for the first time I put a pair on and realized it was a bad idea and had to take them off.  The first time I've felt defeated by my legs.  The first time I've felt like 'uh oh, is how bad my arm is moving downwards?'.  To me, this is not a trivial thing, it scares me.

I've struggled this week with exercise, been telling myself it's not big deal just a bad week, when the reality in my brain says the more often one tries to run, bike etc... the better they get at it, the farther they can go, or faster they can do it, that's why they call such things training.  This week however I seem to have gone backwards and my legs can do less.  Again I keep telling myself it's just a bad leg week, just like the many bad arm weeks I've had.  Until I couldn't pull off the heels, then my mind races to a place I don't often let it go.  To a place of fear that my often useless arm is now going to becoming as well my now useless leg.  But, despite that I will continue to tell myself 'it's probably just a bad leg week' and move on to the next day.  And tomorrow I will run, or walk or bike again.

So with nausea, feeling stoned and foggy, being exhausted, shaking badly and not being able to wear a pair of heels... today just kinda sucks.  BUT I know myself that even on days that suck there are moments of joy to be found in them, sometimes you just have to look a little harder to find them, or sometimes you need someone else to show you the way to the joy.  Today it was the friend that did that by a very sweet, thoughtful caring text message right at the moment I needed it.  It made me cry (no joy in that LOL) but the words had a push to keep on pushing.  The words had joy in them.  Included in those many joyful words was a quote she read and forwarded along with the rest that I particularly needed to hear today. 

"Toughness is in the soul and the spirit, not in the muscles."

I also found joy in some 'me' time.  I had a hair appointment booked and despite the fact that I could have easily stayed in my pj's and not left the house I went.  So I found joy in getting pampered a bit while my parents watched Izzy for a couple hours.  I look better, I feel better.  Mind over matter right?

The end point I guess is this.  There are days when I would much rather crawl back under the covers cause it's just a crap day and I know from the start how it's likely going to play out.  But the fact of the matter is I am a MOM first and I have health problems second.  There are two sweet girls that need a Mom to take care of them (even if my almost 6 year old thinks she can do everything for herself) and they do and always will come first regardless of what kind of curve ball my body might be throwing at me.  And I am happy to push through for them on those kinda days because they are amazing and they are joyful and my love for them makes everything better.  AND even on a day that just plain sucks, there are moments that come your way to bring you joy.  Even if you can't find it yourself and need someone else to show it to you, or you have to look really really hard.  It's still always there if you are open to finding it.

Jun 10, 2014

Twas the night before... Diagnosis?

Well tomorrow's the big day... As I sit in a hotel room in Moncton my mind is racing (well to be honest it has been all week). 

My husband and I dropped off our youngest Izabella in Montague at my Mom & Step Dad's today and then picked our big girl Samantha up from school and dropped her off at my step Mom's before driving to Moncton to spend the night so we wouldn't have as early as a morning departure to Saint John tomorrow to determine my 'fate'.

I'm trying my best to find the joy among the fear today especially.  Enjoying alone time with my hubby which is rare for us.  We did some shopping, checked into a nice hotel and went for a lovely dinner at a nice Italian Restaurant and had some laughs.  But to be honest my mind is drifting often in between the 'joy' moments. But I am grateful my husband is home right now and is by my side.

I have come to the conclusion that no matter what the outcome is tomorrow it's going to suck.  IF I'm diagnosed tomorrow with Parkinson's Disease that sucks.  Sucks the big one.  It's scary as hell...   But if I'm not diagnosed with Parkinson's that sucks too, cause I'll be back to square one all over again.  Back to a place where I know something is screwing up my body but no idea of what and therefore no treatment options.  So, tomorrow sucks.  No matter how you look at it, it just sucks.

So I shall find the joy in my glass of wine
 make an honest attempt to get some form of sleep (which is rare for me at the best of times, let along this week) and say a prayer that tomorrow has a definitive answer.  A diagnosis for the turmoil my body has been increasingly going through.  A start of a new chapter where I can deal with things as opposed to wishing I knew what was causing them.  No mater how I try and spin it though, I am clean terrified...
Until tomorrow....


I'd be lying if I didn't say that I was remaining silently hopeful that perhaps my tests for Wilson's Disease would come back positive.  Odd to be hoping for a diagnosis of a neurological condition, however it was the lesser of two evils.  Treatment would mean that the disease would never progress any further than where it had, unlike all other conditions that are degenerative.  However, that is not the case for my journey.  I received notice today that my copper levels were normal and therefore Wilson's disease has been ruled out.

So, I shall carry on with my Parkinson's treatment plan over the course of the next two months.  After a bad first week of remembering the meds I now have a system down and yesterday started on the 2nd dose increase of many yet to come.  Has it worked?  Not yet, but they advised me that once at the full dose for about 2 weeks I should know if it's working.  At this point in time it looks as though I have two possible outcomes.  An official Parkinson's diagnosis, or further unknown territory and to be perfectly honest out of those two scenario's the unknown territory seems more frightening.  Sounds rather odd doesn't it?  Don't get me wrong I certainly do not want to have Parkinson's disease, however there is something causing my body to break down and not cooperate.  Something causing what can sometimes be violent tremors.  There is something causing me to have extreme difficulty with fine motor skills among many other issues and having everything ruled out and then having this treatment not work would mean I'm back to square one.  Back to a world of frustration of not knowing why and still getting worse.  So at this point in my journey now that Wilson's has been ruled out I pray that the medication works.  That it provides me with some relief and periods where I'm able to hold a pen and write a note among many other things.  Thankfully at this point in time I still have more good days than I do bad ones, so I find joy in those good days.

All and all I am blessed.  I have many things despite my health issues to be joyful for.  My two beautiful daughters, a loving husband, family & friends I love that support me and a wonderful Church family that does the same.  A wonderful family Doctor & now a great specialist in NB.
As I said last week in a facebook post, that in the recent week with so many suffering such great loss like the three fallen RCMP officers in Moncton a family, a community and a country mourning such a great loss, any of my troubles seem very minor.  So today as I'm about to watch the funeral service for these men I pray for their families to have strength to get through so they themselves can find joy in their memories.

Jun 2, 2014

Even I have to admit some days it's harder to find the joy than others...

I am still impatiently waiting for the results of my testing for Wilson's Disease, my Doctors office assures me they will let me know either way.

I also now have a week under my belt on the Parkinson's med's.  Well the first round of minimal dosing.  I'm struggling with remembering to take them (I don't even take a Tylenol) and I have reminders set on my phone etc... but I have to say I've missed a couple.  I think I have a new system a bit better sorted to try and fix that from happening.  Increases are suppose to gradually happen every week for about 7 weeks before I'm on the proper amount to see if it works.  I hate pills. 

As the title reads it is sometimes harder to find the joy.  For instance this past Friday was a great day.  I felt great, my tremors were at a minimal, I had gotten some sleep, heck I even pulled off a 14k bike ride Friday morning followed by some outdoor fun with the family.  And then the weekend hit.  The days where I am thrown a curve ball and reminded just how bad the bad days can be.  I started my Saturday by attempting a short jog which I've done many times only to end up frustrated and annoyed because my body was just not cooperating.  I was a mess, shaking like a crazy person both arm and leg and just could not get out of my own way.  Both my girls had their big dance recital that afternoon and I struggled greatly trying to pull off hair and makeup.  Particularly the fine art of mastering a bun in my very curly big girls hair.  I pulled it off though and they were both ready.  Sadly by the time they were both ready Mom was done.  It was everything in me to get enough get up and go to get out the door.  I showed up at the dance recital wearing capri jeans, a tank top and flip flops.  NOW if you know me you know I do not go to an event without a pair of heels.  I LOVE my heels.  So for me to show up among all those people all dressed nicely to enjoy their children and grandchildren's performances flat footed meant I was definitely having an off day.  In fact my leg was shaking so badly that I didn't think I could pull off heels.  The girls took the stage for their performances and all my pain, shaking and troubles melted away watching them as proud Momma beamed.  Then it was home where sadly their Dad took them off geocaching on the trail near our house while I headed to bed for a couple hours when I would have much preferred to tag along with them on such a beautiful day, I simply could not.

Sunday hit and not much had changed, in fact my tremor was even worse.  Normally I can hold onto something with some weight and the tremor will stop as my muscles are engaged, not so much this day.  By the end of the day it would shake sitting on a table.  I spent most of the weekend when in public with muscles flexed, hand in pocket or even sometimes sitting on my had to try and control it for others eyes.  Why?  I don't really know.  It's not like it's a secret.  It's physically exhausting to have all your muscles tense for hours on end and by the time Sunday evening came my body was nearly done in.  Completely and utterly exhausted and I enjoyed the quietness of home where I could just let it twitch and move and do it's thing without worrying about hiding it. 

Now Monday has hit, I did get some sleep (another rare thing in my life lately).  So this morning I sported my runners again to attempt that run, it was better than the other day no doubt but it was way more walking than running.  My body is simply still recovering from two wickedly bad days.  Maybe tomorrow it will catch back up and get back to normal.  Ha!  Normal, what's that?  Maybe I should say it'll get back to being 'on'.  A good body day, a day where my body hates me a little less.

So on those bad days I simply remember the joy I found on the good ones, like that long bike ride and the fun outdoor family fun.  Focus on those moments knowing that it may be a bad day where I have limited ability to do certain things with ease that another good day is around the bend.  Because lets face it, they can't all be bad.  Life is still good, it could always be worse!

My girlies sure do make me joyful!'