Apr 30, 2014

In sickness and in health...

We get married and say those vows, but when we're young and saying them do we really think of what that means?  Do we truly expect the possibility of maybe being a care taker someday for our spouse?  Of course not...

I however and beyond grateful for a husband that said it, meant it at the moment and continues to show me he means it today.  One that is willing to show me he meant those vows 20 years from now if things go south.

A song I love 'Unanswered Prayers' by Garth Brooks comes to mind lately.  I remember a time when I wished and longed for something and was heartbroken when those prayers weren't answered.  I have always understood since the moment my eye's met my husband Aaron's on December 23rd of 2005 why.  As the song says 'remember when you're talking to the man upstairs that just because he may not answer doesn't mean he don't care...sometimes I thank God, for unanswered prayers'.  However since becoming sick and more so since April 3rd that song comes to mind more and I truly am thankful because not having those prayers answered meant I was where I needed to be at the right time with the right husband.  He gave me joy a new life, two beautiful daughters Samantha & Izabella and has shown me what true love really is.  No matter what my mood lately he's quick to tell me that it's all ok, that 'it is what it is' and we shall deal with it, together.  He has even reminded me by repeating those words in our vows multiple times.

Regardless, admit it or not he must have his own fears as our future is potentially a much different outlook of one than what we would have both envisioned.  And as strong as he is being for me, he must be grieving that imagined future to some degree as am I.

Today I had an emotional day.  Very shakey a leg that has been twitching out of control for over 12 straight hours.  I am frustrated and then received a call that the waiting game is over.  My appointment is booked to confirm or deny my diagnosis for 3 weeks time.  I have been impatiently waiting for that call for a month I knew it was coming, I wanted it to be here now... Oddly enough after getting the date I found myself an emotional mess for the afternoon.  Why?  I don't know.  I guess just another phase of adjusting to the possibility of a future with PD.  Despite my roller coaster day, my husband has been sweet, kind, a bit foolish to make me laugh and supportive as always.

So, I am thankful.  For a wonderful family a great support system and most importantly a husband that puts our girls and me first above all else.  Who loves me unconditionally and will do so 'in sickness and in health'.  So to him.... I love you, as much as I did when we were first together like the photo below... always and forever... xo

Apr 22, 2014

The waiting game

It's been 19 days since I heard the words Parkinson's Disease.  It's been a very long 19 days with an interesting cocktail of emotions.  I am much like the last nearly 10 months playing the waiting game.  This time however the waiting game has an end in sight?  Every time the phone rings I rush to it hoping, praying that it will have a (506) area code.  Waiting for that appointment date to see the Neurologist that specializes in Movement Disorders office to call  Waiting for the appointment with the 'Parkinson's expert' to confirm the last Neurologists suspicion of my diagnosis.  The call has yet to come.

When that kick to the gut happened in New Brunswick 19 days ago, after the feelings of relief, anger, fear started to subside (for a minute.) I thought to myself that I wasn't sure I could handle saying those words over and over again to each person I'd meet.  I had been flooded that day with very caring messages of concern and support leading up to my appointment but the thoughts of running into someone, having them ask how my appointment went seemed debilitating to me.  So, I made a decision.  I decided that rather than have to say those two fearful words over and over again I would simply go home, put my girls to bed, tell them I loved them and then sit quietly and post it on facebook.  To me in this moment it seemed like the only logical response.  After all, I've always been an open book kind of person, so this seemed logical. The only way to let everyone that was going to ask when they saw me know at once so I wouldn't have to repeat those words.  So, I did just that.  Upon posting my 'possible' reality of the future the outpouring of concern, care and support was indeed overwhelming.  I have since received countless calls, texts, emails and messages of love and support.  It was and has continued to be extremely comforting.  People I hadn't had much interaction with for years were reaching out to me with advice, books to read, songs to listen to, quotes and true heartfelt messages.  Offers flooded in of drives to appointments, a friend to talk to and so much more.  It's truly been overwhelming.  Often when a crisis happens in our lives of any magnitude we have a set circle that we know will be there, we have an outer circle of that that we assume will be there and yet another that we in our own minds expections think will be.  Yet often some of those assumptions are very wrong and it can often hurt.  However I truly think it's outweighed by the ones that touch you that you would never expect it from.  Now by that I do not mean that you didn't think those people were good, caring individuals.  What I mean is that they were not in one of those 'circles of assumption' and often they are the ones that can bring you to tears and give the most emotions unexpectedly.  In a good way.

Now back to that decision to just put it out there in one shot, type those two words and then I could discuss it with those I ran into without having to repeat them.  They would already know, why would I need to say them aloud again?  Well, I don't regret that choice.  However, that said I do feel that I may have misjudged it being easier.  My first encounters after the 'post' resulted in beautiful hugs with no words said while I positioned my eyes to the ceiling to stop the welling of them.  Then came some sincere words of how sorry people were along with those unexpected offers of help.  All of which seemed to hit me harder than I had expected.  I guess what I'm saying is that I thought not saying the words out loud would make it easier to accept comfort and kindness without being upset.  But rather I think it gave people time to think about my situation and react in a different way than had they had a reaction of shock.  Not necessarily good nor bad, just different than what I had in my head, and to be honest, I don't think any easier for me.  I caught myself the following Sunday in Church being my usual bold outspoken self but in a way I realized after the fact I did not like of myself.  A lovely member of my Church came towards me to give me a hug and in my upset state I saw her eyes and to me all I saw was sympathy.  I'll be honest, it bothered me.  I even was as rude to come out and say "don't give me that I'm sorry for you look".  Realizing after the fact that although that may have been a glimmer of the look it was actually a fine fellow Christian strong in faith giving me a hug as a sister, letting me know I was in her prayers in a sweet and yet unspoken way.  Shame on me...

So, can I say all my reactions to everyone's support and love have been the way I should be, I suppose not.  But what I can say is every touching message, prayer, hug and encouragement is appreciated.  And I truly do feel the love in them all (even if my reaction in that second is less than gracious).  I honestly can't explain that much further other than to say I'm still trying to process a possible fate for my future that has yet to be fully confirmed as I continue to play this waiting game.  I try and stay positive as best I can even on the really bad shaky weird things happening to my body days.  I will continue to try and keep pushing through and remain grateful and positive even while playing 'the waiting game'.

Apr 11, 2014

The beginning, or the end? Guess that depends on how you look at it...

My journey began about a week before Canada Day 2013.  Although looking back now perhaps it began years prior.

Sitting in my office working on an excel spreadsheet the wave first hit.  A rocking sensation.  That feeling you get after being on the rough seas on a boat for a long time and finally hit dry land.  It left as quickly as it appeared.  However in the weeks to come it would come more frequently and last longer periods.  Finally assuming I had vertigo something cause by my inner ear I went to the Doctor.  Some medication was started.  It did not have any effect.  By now the headaches have hit full force and rarely go away.  Next came a mild shaking in my right hand, likely something nobody else would notice but I sure did.

By the time August 5th came it was so severe I was unable to sit still for any length of time and was unable to concentrate or focus for long periods of a time on a computer screen.  Oddly enough the only time the sensations got better was if I actually went on a boat.  Blessed with friends that have them I spent much time on theirs and it was as if I was at sync with the sea?  So another trip to my amazing family Doctor resulted in being put on sick leave while he attempted to get me some concrete answers on what was going on.  A referral to a Neurologist, and an ENT were sent.  By now on some days my shaking was visibly noticeable to others, not just myself.

To speed this along...  The ENT determined my issues were not inner ear related, given my strong female family history of MS as well as my now compounding list of symptoms far too many to list, it was more likely that the disease that plagued many of my family members was the culprit.  At one point I had a trip to the ER as things were so bad, an emergency CT scan was done and the ER Doctor informed me that I should see a Neurologist and again suggested MS a possibility.  A subsequent ER visit gave me the same speech but an order for an MRI as well as a second referral to a Neurologist.

Now moving on to September.  Getting worse by the week, a slew of added symptoms to the mix and most days feeling frustrated to say the least.  I finally see a Neurologist who says it's good news, my MRI is clean, as was my Catscan.  No scary stuff like strokes, tumors etc... She suggests that I may have something called Essential Tremors.  She suggests a medication that could tame the tremors and help the excruciating headaches at the same time.  Although ET is typically on both sides she thought it was worth a try.  One week on the meds and I could barely get out of bed.  A Mom of a 5 year old and a nearly 2 year old with a husband that works away, this was not good.  I stopped the medication. Next appointment to her was to attempt a 2nd type of medication and now ET's had been dismissed.  Three month trial with slow dosing.  I was stoned most times, as each increase of dose happened I felt horrible for about 2 days.  Again no avail.  This time the Neurologist I had been seeing has officially given notice she is leaving the province and therefore will not be sticking around to figure out what's wrong with me.  Her words and I quote "I just have to throw in the towel here".  And she did.  Not before sending a referral to another colleague of hers however.  I see a second Neurologist, this appointment does not go well, he dismissed my symptoms, made me feel like I must be going crazy and said to come back in 6 more months.  In fact his exact treatment plan for me was to Meditate, Do Yoga and Reconnect with my Religion incase I was angry at my faith for my body falling apart.  Not that I'm opposed to any of those things, but seriously???   It has now been over 8 months, some days I cannot turn a door knob or lift my arm above shoulder height.  Some days the simple tasks we all take for granted are so difficult for me that it brings me to tears.  I KNOW something is wrong, I am too young for the right side of my body to fall apart.

Finally thanks to my incredible family Doctor who never gave up on me and knew something was wrong he pushed for two referrals to two different Neurologists in two different provinces.  The day has come to travel off island to Saint John, New Brunswick.  April 3rd, 2013.  A very long 4 hour drive by myself after hearing of the passing of a friend the night before gone too soon.  To say I was heartbroken, upset, stressed and worried about the appointment on top of it would be an understatement.  However in the back of my head I thought, I've gotten nowhere with any other specialist why would this be any different,  Maybe I am losing it?

I wait impatiently for my name to be called.  Praying that this Neurologist that came so highly recommended by my own family Doctor would be the one.  The one to figure this all out.  The one that would take it seriously, believe me.  I think to myself I cannot handle one more medical professional giving up on me.  Sadly this seemed to be the theme the last several months not only by the medical community but by some friends as well.  He calls my name.  This is it....

After a few questions in his office he tells me to go for a walk down the hall.  Watches me closely, then tells me to go into an exam room.  Does a battery of clinical tests, some of which the other two had done.  However this time is different.  He is asking me to perform movements, checking my balance then asks me to go for a walk again.  My right arm is not swinging only my left.  Something I had noticed months prior it's as if it's dead and hanging.  When I get on the treadmill to walk it bounces off my leg as I increase speed but that's the extent of it's movement.  He then takes me back into his office, asks me to write a sentence, draw a spiral and some other things.  Again things neither other Neuro asked of me.  My handwriting is a mess, my drawings liked like that of my now two year old.  He asks me how long it's been like that.  I tell him I'm not sure that I have been unable to hold a pen to write for quite some time now with ease so I had stopped trying.   We talked a bit, discussed the physiotherapy I'd been doing, the time I've been spending on the treadmill to keep my leg from turning to mush like my arm has been.  The increasing symptoms and difficulty sometimes with daily tasks.  More questions, more movement tests etc...

The long and short of this appointment results in something I was not expecting.  I had at some point despite the clean MRI so far expected to hear the letter's M & S be announced to me.  I knew a lot of people with the disease that had clean MRI's at first.  I was prepared for that diagnosis.  I had an association with it.... I knew I would stay healthy and active and combat the disease.  I knew there were great treatments to slow progression.  I knew it would be ok.

What I did not know anything about however, was Parkinson's Disease.... 'What did he just say?'  went through my head.  An instant response to him first was "Thank you for not telling me I'm crazy".  To which he gave a gentle smile and said, "You are not crazy, there is something very wrong and we will get to the bottom of it.  You have a tremendous amount of signs of having Early Onset Parkinson's Disease.  At this point we call it 'suspected' not 'confirmed'.  You will need to see an expert on the disease to confirm it.  I just so happen to have a colleague here at this hospital that is such expert and I will speak with him, send a note to your family Doctor and we will get you back here as quickly as we can." 

What the hell just happened here????  Is all I can think to myself.

And so begins the journey of finding Joy....