Jul 12, 2014

All good things come in yellow

Yellow has always been my favorite colour.  It's bright and cheery.  It seems like a fun colour to me.  Many beautiful and wonderful things come in yellow.  It's a colour that has always made me happy if I wear it, paint it on a wall, find a great pair of heels in it.  It's just a great colour that makes me feel happy because I think it's a happy shade of the rainbow.  Most recently I've found myself wondering if one can find joy in the colour yellow for something unusual?  A little yellow pill perhaps?  My levodopa is yellow and at first when I started taking it I hated it.  But as time goes on my attitude about that is changing.

First of all, I hate pills of any kind.  I have never been one to take even so much as an Advil unless I absolutely have to and nothing else has worked.  I'm not an all out health hippy or anything, but I do believe our society as a whole relies far too much on a pill to fix everything and anything.  Parents rush their children to an walk in clinic the moment they have a sniffle, adults rush to the Doctor for a miracle pill for whatever ails them.  Don't get me wrong there are times we all need a pill of some sort to fix things, but I think generally we are becoming too dependent on the quick fixes of such.  People are becoming immune to antibiotics and super bugs are being formed because they are antibiotic resistant.  These things should tell us something.  I have an amazing family Doctor that I trust and if he thinks I should take something I will, so don't get me wrong I'm not opposed.  But I also have an amazing Naturopathic Doctor who often has wonderful solutions to things outside of western medicine and the need for a pharmaceutical.  I was put on a couple of neurological meds in the initial months of my health issues when they were still trying to figure things out.  Both rounds of meds were nasty.  The first I wasn't even able to function, let alone be a mother with a husband that works away for weeks at a time.  The second I tolerated a bit better but it still had some pretty nasty side effects and most importantly I wasn't being treated for the right thing, so it had no benefit to my issues.

So to say I was reluctant to start taking the new 'little yellow pill" when the Parkinson's Neurologist talked to me about it would be an understatement.  Sadly in order to be properly diagnosed it was a necessary evil, as its commun particularly in young onset patients to diagnosed based on treatment working.  So, after doing as much reading on it as I could I popped that first little yellow pill.  I certainly did not see beauty in it like I typically do in the colour yellow, especially in the beginning with the nausea and stoned feelings.  However, I will admit that now that I have started on the full dose after 6 weeks of slow increasing of doses and my body has adjusted I am starting to feel as though perhaps there is some joy in my new little yellow friend.  Not 24/7 joy but periods of time.  Particuarly an hour or so after taking one my tremor seems to ease off (I've even had a couple of days it was gone for a couple of hours entirely, despite the neurologist telling me it likely wouldn't help the tremor) and I'm able to hold a pen to write a note, or do some fine motor tasks with much less frustration than before.  That along with the slowness and stiffness in moving particularly after sitting for long periods is much better.  So, perhaps despite my hate for pills, maybe this ones worth liking.  I hope not forever, but for the moment, for now.

I hear quite often things like "you're so busy, always on the go" or "you look really great, you don't look like your sick" and many other such statements.  At first hearing these things really irritated me.  My thought process was this... So I'm having health problems, I'm sadly unable to work because of them.  So does this translate to people that IF I leave the house I should only do so in a ratty old pair of sweats, not do my hair or makeup and make sure I look the way I feel, which is often crappy?  Am I suppose to sit around the house with a 6 year old and a 2.5 year old and not let my children have any fun?  To these types of statements my feelings on them are this. 

1.  Just because you do not feel great, it does not mean you should look it too. 
2.  If you look pretty (or wear a rockin' pair of heels) you will feel pretty and in turn better to an extent at least.
3.  Confidence and courage to endure a crap day can often be found in looking good and getting a compliment.
4.  I refuse to walk out my door in a pair of pj pants, or wear sweats everyday just because my body does not cooperate.  It is not me, and I will not do it. 
5.  IF the day comes where you see me dressed frumpy and never wearing heels anymore that is the day my friends and family should worry... because that is the day I officially gave up... and I do not plan on doing that...
6.  I have a 6 year old and a 2.5 year old I am a MOM FIRST... They come first.  Their needs, their hopes, their dreams, their desires, their happiness comes first and ALWAYS will.  Any of my health issues or uncooperative body parts come second to them.  No matter what.
7.  I will make sure my children have great childhood memories that include a mother that played with them, had fun with them and took them to gain new experiences and memories if it kills me.  If I pay for it dearly which often I do, so be it.  They deserve that and I refuse to let my body deny them of that.

Don't get me wrong.  Most of those comments and statements I hear are completely just compliments, which I appreciate so very much.  If you haven't complimented someone yet today you really should.  Sometimes you just don't know what that person may have going on in their life that day and a simple, kind gesture or compliment might just be what they need to get through the rest of the day.  Be kind, be sensitive and genuine to everyone. 

So after that little rant Ha! Ha!  I guess my point to all of that is that in my journey of finding joy I'm sometimes finding joy in the most unexpected places.  Like in the little yellow pill.  I've found in the last couple of weeks I'm able to do a little more.  I'm not back to my old self by any means.  But I'm able to do a craft with my kids provided I time it right with my little yellow friend entering my system.  So it's something to be grateful for.  I also find tremendous joy in that bright yellow beautiful sun that summer brings.  Vitamin D is a huge and very beneficial thing for anyones health but particularly in sufferers of neurological conditions such as MS, Parkinsons and many other health problems.  So there's no doubt that you get an automatic pick me up or energy boost from that beautiful yellow thing in the sky.  I also find joy in the fact that we live on an Island surrounded by beautiful beaches.  Where even on a bad body day I can take my girls to one and literally sit on my butt and do nothing all day long while they play happily for hours on end.  They don't realize Mom's not feeling well because they are too busy having fun and I don't need to fight with my body to make it cooperate because I can just sit and do nothing. 

And how can you not be happy even if you feel crappy with the summer smiles & cuddles of two sweet girls!

So there is just so much joy to be had in all things yellow.  Even a little yellow pill.

Jul 2, 2014

"True happiness is an acceptance of life as it is given to us, with it's diminishment, mystery, uncontrollability, and all" ~ Michael Gellert

I stumbled across this quote and I have to admit it's a great one.  Acceptance is sometimes a tough pill to swallow, but one can't move forward in life and find any joy or happiness unless we learn to accept any obstacles that have come into our path.

This week has been a week of acceptance, a week of happiness, a week of Joy.  I have officially been on the Parkinson's medication Levodopa now for a full month.  Still slowly increasing doses once a week and still 2 weeks to go until I'm on the full amount.  (I was told once I was on the full dose for a good 2-4 weeks I would know for sure if it works).  When I first started taking it I was still praying in the back of my mind that the tests for Wilson's disease would come back positive, I would be able to stop taking it and the fear of having PD would be gone.  When those tests came back negative I had some soul searching to do.  After a year of being sick and each month impairments being added to the list and my body getting worse I had to resolve to the fact that I needed to accept.  To accept the fact that when I read up on Young Onset Parkinson's Disease that I do have the majority of the signs and symptoms, it all fits.  That it's not by chance that two neurologists are suspecting it.  Accept that I needed to come to terms with what I wanted out of taking these pills.  About a week and a half ago I finally got there.  I accepted the fact that if this medication works and gives me the ability to move a little easier and to hold a pen and do some fine motor things with less trouble then I would be happy.   I have had so many days on this journey filled with Mom guilt.  Days this past winter when Samantha would beg me to go build a snowman and I just couldn't do it.  Days when she would ask why I didn't build their sledding track in the backyard like past years.  Days where Izabella had to watch movies all day long while I laid on the couch when Samantha was at school.  Days where a 2 & 6 year old can't quite understand why Mom isn't doing the stuff she used to.  Days where Samantha will ask me "Momma, why is your hand shaking so bad?" The guilt is often worse than the health issues.   So I accept that if the meds work and I have PD that's ok cause I just want to feel better and be able to do a craft with my kids and if a pill is what it takes for that to happen along with my push to continue walk, jog, bike and horseback ride then so be it.

I can say that this past week was by far one of the best weeks I've had in months.  Was I back to the way I used to be?  NO.  Will I ever be?  I don't know but probably not.  However, I have had significant improvement in many areas.  The Movement Disorder Neurologist told me that the PD meds would help primarily with muscle rigidity, so I wouldn't be so stiff after sitting for a while etc... and help improve my hands ability to perform fine motor movements.  He said it would not help the tremor. 

The first thing I noticed was that if I wanted to sit down and relax, watch some tv or something I did not need to time my sitting.  I was in fact able to simply sit without needing to get up every 10 mins or so to move around so I wouldn't freeze up.  Even when I would before I would be hunched over and felt crippled up until I got up and moving again for a minute, almost shuffling my feet while trying to get going.  It made me feel very old.  I am thrilled to say that I am able to sit for much longer periods of time now and do not feel crippled and hunched when I get up.  Or at least not to the extent as before.

Then came the side effects, nausea wasn't very pleasant but seems to have subsided thankfully for the most part.  The kind of 'stoned' feeling as each week's increase would hit.  However the BEST side effect happened.  Sleep!  :-)  I had only slept about 2 hours a night, sometimes 4 for at least 6-8 months now.  Twitching, pain and other things kept me from getting much of that.  I am now sleeping.  Not an 8 hour night or anything but averaging 5 or 6 hours, which in comparison is huge!  It's a side effect I know but if there has to be one it's a GREAT one...

Next I was able to time some little projects.  I have found that if I wait about an hour after taking a dose I seem to be able to handle a pair of scissors, or hold onto things with my right hand easier.  I still can't do it for long periods of time, but I can pull it off for a bit.  I am working on a bedroom makeover for my soon to be 6 year old as that's what she wants for her birthday.  I gave myself two full months to complete little projects and tasks knowing I would find a lot of them difficult to do and would need to do in stages.  Something that normally I would have banged out in a day or two.  But I was able to hold a paint brush and paint a dresser and a shelf last week.  I was able to cut up some cardstock to make name letters for her room.  I was able to use a putty knife to fill some nail holes.  I know this does not seem like a big deal and these do not seem like giant tasks, but to have been able to do these things for me felt almost like a miracle.  It brought me so much joy I don't even quite know how to put it into words.  These simple little tasks have brought me to tears over the past 6 months many times.  I remember trying to use a stapler to put tickets together for a fundraiser back in March and between dropping it and not being able to push it down with ease or hold it I had a 10 minute frustration cry.  There have been many such instances.  So to have been able to time medication with a little project and complete it without either screaming with anger or crying with frustration has been HUGE...

Overall the week was so great I was so blessed.  My tremor hasn't even been as bad.  Despite him telling me that it would not help the tremor.  I've done some reading and some places say it will help others say it won't.  Part of it may be that I'm getting some sleep, as exhaustion makes the tremor worse.  Dont' get me wrong it's still there and still worse some days, but there are more days of it being manageable.

Maybe this is all fluke, maybe it's meds working.  All I know is that I've had good body days before, good weeks even and I've had some terrible weeks where it was all I could do to just get out of bed, in fact I had that a couple weeks ago and it reminds you to be grateful for the good body days.  However this past week I was able to do a few things that I could not have done 6 months ago.  I still have to 'time' when I do it, I still have to do them in stages as my hand cramps and tires quickly but I was able to pull off some things that I once took for granted.  It was joyful regardless of why...

So in my road to acceptance I have come to terms with the fact that IF this medication makes my life better, improves my ability to do things, to be a better Mom and feel less guilty when I'm unable to do certain things with them and in fact leads to an official PD Diagnosis then I am happy & content with that.  Uncertainty is worse.  Not knowing what's causing your problems sucks and without a diagnosis you can't even effectively research ways to improve your own health.  You can't look at alternative therapies or trials, studies, or options.  So if this phase of the journey leads to being officially diagnosed with Parkinson's disease and I have treatment options that make my life easier, better, more manageable and with less 'Mom Guilt' then I will be joyful for that...

"Joy does not simply happen to us.  We have to choose joy and keep choosing it every day." ~ Henri J.M Nouwen

I will be joyful in being a better Mom and having more days of fun memory making than I do guilty days where I feel useless and like a bad Mom.  More days like yesterday's Canada Day Fun!