Tuesday, September 16, 2014

To those of you that wonder...



  
  Since I have come home with my service dog, I am amazed by the amount of people that ask about her and what she does.  I'm also amazed by how many of these people know me.  This makes me realize just how many people don't know me.  They aren't on facebook(www.facebook.com/mybeautifullifewithms), or don't read my blog (www.mybeautifullifewithms.com) or haven't seen me in a while and don't know about my illness.  So, to everyone out there that wonders...this blog is for you.  If you know someone that has asked about my dog or me, you may forward this along to them.
    I was diagnosed with Muscular Sclerosis last May.   MS is a disease that affects your nerves.  It can cause lesions on your brain, spinal cord and optic nerves.  Unfortunately, my lesions spread through all of those.   It took a way a large chunk of my summer... and my life.  I was in and out of hospitals.  I lost the ability to walk, use my arms, etc.  I lost sight in one eye.  I developed a lesion on my cerebellum that affects my balance.  MS is a progressive disease with no known cure, only ways to slow it down and prevent new lesions from forming.  I was put on the strongest and most effective MS treatment on the market.  It was/is by best chance at warding off the possibility of new symptoms and lesions.  My most worrisome lesion is at the base of my brain and involves my spinal cord.  If that lesion acts up or worsens - I could lose function of everything below that point.  The medication, Tysabri, comes with its own major risks.  After months of doctors, hospitals, visiting nurses, occupational and physical therapy, etc.. the benefits outweighed the risks (The main risk being non-curable brain disease, PMI (YAY)).  I get my Tysabri infusion every 4 weeks, non post-changeable, non-negotiable.  So far, it has been effective.
     My MS has left me with symptoms that affect me at all times.  I still have no sight in one eye which leaves me with no depth perception.  I cannot see differentiation in terrain (bumps, lines, stairs, etc..).  Hand eye coordination is a thing of the past..so are 3D movies.  Most annoyingly, I go to grab something or put something down and its not where I think it is.  So, I often appear clumsy.  My balance is terrible, also making me appear clumsy.  I cannot look up above my head without completely losing balance.  Oh, and try bending over to grab something you dropped, especially with a child in one arm, with bad balance.  Not easy!  The right side of my face, cheek and tongue are constant pins and needles (like a cactus tucked between your teeth and gums).  My tongue fights me when eating and talking.  These pins and needles and tightness extend across my neck and chest.  My shoulders and upper back are always uncomfortable and tight.  Along with many other less severe physical symptoms, anxiety and depression run rampant in MS patients.
   My service dog, Crane, takes over in all these areas that I fall short.  She is my right eye, my depth perception, my balance and my comfort when I feel overwhelmed.  She stabilizes me, retrieves items off the floor, opens doors, helps me with the kids and much more.  She was trained specifically for my individual needs by Educated Canines Assisting with Disabilities.
  I look fine, yes, like nothing at all is wrong.  Even my husband forgets sometimes.  Unfortunately, I am unable to.  I have good days.  That is when I try to get out, to take the kids out, to take on as much adventure as possible.  I have bad days.  That is when I use Crane.  I don't have many adaptive devices in my house, nor do I need them at home.  We have handrails on both sides of our stair ways, to help me brace myself when I go up or down.  We have reflective tape down the baseboards so I can make it down the hall at night without ricocheting off the walls.  Other than that, I really get around at home like nothing is wrong, because its familiar.  The more time I spend at a particular place, the more I can function normally there.  At the kids school, I know where all the lights are, which way the doors open.  I know where the cracks and bumps in the pavement are.  Its mainly when I go somewhere new that I am most affected.  I have to survey every step while also trying to look up and around.  I usually have to do this while keeping track of the three kids.  I have to keep aware of the fact  I cannot see anything on my right.  I have to do this while feeling completely overwhelmed... and typically exhausted.
  I began this blog to help people.  To remind people how to be positive in times of "darkness".  May it be others with MS, those who know someone with MS, or maybe some other disease or illness.  I was so taken back by the amount of people that began reading my blog and the amount of people that have contacted me in result of it.  I never imagined how many people it would actually help.  I never imagined how it would help me in relating to those around me.  How it would help others to understand what Im going through without me having to stand there and complain/explain.
  I am always caught off guard when people say they are inspired by the choice I made to be so positive and determined.  I never really saw it, or see it, as a choice.  I suppose its mainly because of my children.  Parents would know this best,  but even anyone that works with children gets a taste of it.  Every time you interact with a child, you sacrifice a part of you.  You put that child first, as you should.  I have three.
They come first, in thought, time, in all aspects of my life.  The same is with marriage.  You put your spouse first (or, you should).  Anything you are passionate  about takes precedence over other things.  My blog could have been My life with MS or My MS Story.  It is not.  It does not have the top slot in my life.  That spot belongs to my children, my family, my amazing husband, MY BEAUTIFUL LIFE....  with m.s.  I don't believe you should let anything  (work, illness, money, outside relationships, hobbies, etc..) take one of those top spots.  Occasionally, MS has to take the top, but it isn't pretty when it does.  Infusion day every 4 weeks is one time it does.  The other is the rare times Im a crying sobbing ball of "why me" and "this sucks", but that I don't let that creep in very often.  If you know me, you already know I take on the world.  Not only is distraction my best friend, so is challenge.  It keeps me aware of all the things I still CAN do, even if differently than before. 
  This dog that I tote around has helped to make our lives more normal and provides security for my future.  I am in constant awe at the ways she helps me and my family.  I am indebted to ECAD and the people there for bringing us together.

 

Thursday, September 4, 2014

Its a dogs life

Life with a Service Dog....finally.   I had no idea, until I watched a video posted on www.ecad1.org over a year ago, how a service dog could help people with MS.  My husband and I always had the dream of raising and training some type of guide dog.  We never imagined needing one.  I had applied to ECAD in July(?) of last year.  Its quite a process.  Application, biography, Doctors recommendation, prescription, letters of reference, personal interview.. Then, if all that goes well, there is fundraising.  ECAD suggests it takes about a year or more to raise the money necessary for a dog ($8500), which is just a portion of what is costs them to breed, raise and train each dog ($25000).  Thanks to my family, friends and community, I raised that money in a few short months.  Then, the waiting began,  This June I received an email that I was slated for Team Training with ECAD.... they had a dog in mind for me.  How exciting!!!!  On July 23 I departed for 2 weeks of training in Dobbs Ferry, NY. Most of you that read my blog have heard some of my ECAD experience in my last blog. I left a sick 2 yr old, clingy 3 1/2 yr old and independent 11yr old, a new litter of unexpected baby bunnies, along with all my other responsibilities of Farmers Market, Household, Flowers & Greenhouse, etc...  What a long 2 weeks. 
    I lived in the ECAD training academy from July 23 to Aug 6th.  There were 4 of us in my Team Training class.  We all lived together in a dorm style setting.  We attended lecture/classroom 8 hrs a day the first week and spent 8 hrs a day out in the city the second week.  On the first day after a few hours of basic rules and document signing, we had "the running of the dogs".  This is where the candidates stand silently against the wall and the trainers let the dogs out and we just watch them "be dogs".  Well, MY dog played a bit ..then she found me...  just like that.  She CHOSE me.  There was no choice about it.  After The Running of the Dogs, we were each given "a dog" but were told not to get attached to it because it might not be OUR dog.  We began learning basic commands and put our perspective dogs through them.  My dog was spot on...with everything...  she was mine..  Throughout the week, throughout learning commands, my dog was MY dog.  On the fourth day we got "assigned" dogs and got to take them back to the dorm with us.  For the next four days they has to be attached to us...even while we slept.  It was such a foreign thing.  Ive had plenty of pets, but this wasn't a PET.  She works for me.  She is my closest and constant companion.  Its like a pre-arranged marriage.  As the week unfolded, I learned that Crane, my dog, had been the one they specifically trained for me.  A few of the other candidates "tried out" a few different dogs to find the right match.  Crane was not having that.  She was MINE. 
Crane is a 19 month old Golden Retriever, born on Christmas day 2012.  She is very gentile, patient and subdued.  The dogs are taught to be silent and invisible until they are called upon to work..and even, at times, when they are working.  You will find Crane curled up under my chair or laying in a corner just waiting for her next command.  In our two weeks of training we learned 80 commands and how to use them.  We also learned much mush more, about dogs and relationships and patience and...life.  Theres so much to tell about my time at ECAD, but you will just have to wait for my book to here ALL the details.
  Now that I am home with Crane, I cannot believe how much help she is to me.  I am indebted to all of you that helped me along my journey to get her.  We are now unstoppable as a family.  Theres no where I cannot go with my kids now.  I even took a trip to Newport, RI with just 4 kids, Crane and I.
  We are just unstoppable and, the love and support this dog gives the kids is just amazing.  I spent the past year and a half ingraining in them that this is NOT a family dog.  It is MY dog.  Well, Crane is so capable, she takes care of the whole family as well as me.







So, we have begun yet another chapter of our story.  Hopefully one of even more adventure and confidence.  Hopefully one that brings me closer to my kids and family. My mission now is to help ECAD in their quest to provide these dogs for people in need.  My intent is to hold talks and demonstrations to raise awareness(and money) for their cause.  I will begin with my annual fundraiser on November 1st and go from there.
Along those lines, my husband and I attended our first MS event, a couples retreat.  We learned so much on how to handle things together and address issues in a much better manner.  We also met some other great people that are dealing with the same diagnosis and changes.  The weekend lead me to change some of my medications around.  Man, what a difference.  Im back to enjoying every second of life and life with my kids and not getting flustered and overwhelmed.  Its really so refreshing to have that inner peace restored! 
Im physically coping well lately.  The headaches have subsided for now.  I still deal with lack of balance, right side blindness, pins and needles in half my face, fatigue and muscle cramps,  but...It could be (and WAS) much much worse.  So, I will happily (as happily as I can) not only accept it, I will make the best of it.