Fundraiser 2014

    I am sending this letter to everyone that was involved with my illness, recovery and fundraiser last year.  I have improved enormously, but never will be back to where I was.  I cannot thank each and every one of you enough for what you did for me…and my Family, whether it was a dinner, donation, thank you card, etc...   I am back to caring for my family, volunteering in my community and writing my blog (which has now reached almost 12,000 readers, www.mybeautifullifewithms.com). I have had my service dog for approximately 2 months now and she is such an enormous help.  My original wish was to hold my fundraiser annually to raise money for ECAD and what they provide for the disabled.  The money raised through my fundraisers would also be put towards a successor dog for when the day comes I need my next.

   I live in a small town.  There are very few of these types of towns left now adays. Our population is approximately 3,000.  It’s a wonderful, beautiful, supportive community.  So wonderful that after I decided this is where I wanted to settle and raise my daughter, my husband-to-be also made his home Goshen, as did my parents. The novelty of a small town is that we are all connected in some way: family, neighbors, committee members, fellow parents, etc..  There are 117 families that have children in our local school. Over the 6 or so years our children attend, you get to know fellow parents very well.  The downfall, or positive depending on how you look at it, is when there is a hardship, misfortune, catastrophe in town… it is all of ours.  It is our people.  Our friends!  Our “Family”!  Last year, it was me.  This year, tragedy strikes elsewhere in our small town, but we all still own and support it. 

    Acknowledging the fact that such a small town only can give so much, I have decided to cancel my ECAD fundraiser this year to allow our town to put their resources to another family in need.   I have had to make many difficult decisions over the past year and a half.  This one though, in light of it all, seems easy.

    ECAD, Educated Canines Assisting with Disabilities, still owns a piece of my heart and still very much needs my, and all of our, support.  However, I need to step aside and let my community do what is best.  For those of you that can, please consider making a donation to ECAD.  With every $25 donation, the donor will receive a Limited Edition Goat Milk Soap Gift Box (free shipping).

 They are available on my website or by mail (send check, made out to ECAD to Tina A Torizzo – PO Box 45 Goshen, CT 06756).

           

      

 To those of you that live here in Goshen, or know the Marsh family, and can only give to one cause please consider the upcoming fundraiser for their family!

                       With Sincere Thanks and Appreciation

                                                                                       Tina A Torizzo

                                                                      www.mybeautifullifewithms.com

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.

 

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. 

 

Next Chapter

I am speaking, tonight, at my graduation.  I have accomplished a major goal that Ive been fundraising, waiting, preparing and stressing about for the past year and a half.  Ive been away training for the past two weeks,  at ECAD in Dobbs Ferry NY, and have finally passed my final exam and Public Access test and have been placed with a Service Dog.  Her name is Crane.  She is a 19month old Golden Retriever, born on Christmas Day of 2012.

She is absolutely amazing.  ECAD has taught her things they have never taught a service dog before(kind of their specialty).  In addition to all her mandatory service dog tasks (opening doors, turning on and off lights, retrieving things for me, etc..) she balances me while I am unstable and she guides me.  Since I am right side blind and have no depth perception, Crane guides me around objects in my path.  When she is unable to guide me around them, she alerts me to a change in terrain and gives me the time and support to figure my way over it.  We spent our first week here in the classroom for eight hours a day learning about these dogs and the training that goes into them.  The second week we conquered malls, grocery stores, elevators, restaurants, etc.. etc.. What a freeing feeling it is to be able to hold my head high and take in my surroundings while Crane watches my feet and leads the way.  I even arranged and trained at a local airport, Wings Air Helicopters.  Yes----If you know me you know how ecstatic I am about that!!

I have spent these two weeks away from my kids, in an unfamiliar environment and with 3 other house mates.  We have been in classroom together, eaten together, shared a bathroom and bedroom... meanwhile trying to bond with this new companion. It has been such an incredible experience.  Ive learned so so much about human relationships, patience, mutual respect, etc.  Ive met so many amazingly inspirational people on this journey.  I cannot imagine this chunk of my life missing.

 


So, tonight, we graduate!  The ceremony is at 44 Main St in Hasting on Hudson, NY.  Anyone is welcome but you must call ahead.

Tomorrow I arrive home and take on life with Crane.  For those of you that live nearby please keep in mind that, although she is beautiful and looks like she would love the attention, even when she looks sound asleep(good portion of the time) she IS working and awaiting her next command.  So, please, keep that in mind.  You may ask to meet her and the proper way is to have me let her shake your hand.  Other than that...all the love and affection comes from me :)

I cannot thank my entire community, donors, trainers and family  enough for all their support through this.  I cannot wait to begin this new chapter of independence and security that as my condition worsens, I have Crane there to help me as I may need.
Thanks in advance!

It begins again..

I spent last night down the lake watching my kids frolic and play.  Last night I fell asleep with them all next to me in my bed.  Memories of over a year ago flood back into my head. ...even down to the baby bunnies outside.  I leave tomorrow.  For two weeks.  Some things are different, for better and worse.  1., My kids are older (better), 2. The bunnies at least have a mom and aren't dependent on me too(better), 3. I know I'm leaving (worse).  The list goes on...  I've waited over a year.  I knew this was coming. I've been looking forward to it.  I DO NOT WANT TO GO.  (If you feel lost reading this, you will have to go back to the beginning and read my initial blogs of leading up to my diagnosis).
I check into ECAD tomorrow evening.  I have signed a booklet full of legal and confidentiality forms.  I will find out more about what I am and am not allowed to FB, Blog, Text, etc..  upon orientation.  However, they were pretty strict in saying "what happens there stays there".  It has to do with confidentiality of the others in my Team Training class too.  So, I will keep everyone up to speed as much as I am possibly allowed.  I am off to spend 15 days in a dorm style setting (with a room mate) and 10 people in the dorm.  We will share one kitchen and one bathroom.  We have strict rules regarding the facility we are staying at and are allowed very minimal visits, as that is OUR time to bond with our dog.  We will live at the facility and report in for class every day from 8am to 4pm.  On the second week, all our days are spent traveling and working in public...I've already probably said to much.  Anyway
I know I have a ton of support, I have a ton of people that love me and care about me and help me and....  but I AM in this alone.  Everyone, when it comes down to it, fights their battles alone.  Although, I have had someone with me most of the time since this disease hit, I now go off ALONE for this chapter.  There will be no family or friends or nurses to help me and look after me.  I will not know anyone.  I will not know my surroundings.  I do not know how this will change me.  Will it make me a different person?  Will it change my view on the world?  On my life? Husband? Children?  I know my life will change, but to what degree, how much of an impact this will have..  I have no idea.

I graduate on August 6th.  I suppose we will all find out then.

I dont even know

By the title even, you can tell Im off.  Im in a swirl of emotion and thought.  Ive got approximately 2 weeks to go before I leave for Team Training, at ECAD, to get paired with my service dog.  I've raised the money.  I've been waiting a year.  I DO NOT want to leave my kids or spend 2 months of this precious summer weather away.  The first six months with the new dog will be crucial.  Its time for it to learn me and bond with me.  My youngest has her heart surgery scheduled for January.  I, obviously, cannot take my dog to the hospital for the week I am there and its within that 6 months still.  I spoke to one of the ECAD people in the whelping facility.  She strongly advised me NOT to change the Team Training date.  Not only for the sake that I might be put on the waiting list for another year or more, but...She knows the Lead Trainer well and if she has scheduled me for this particular class, she has a particular dog in mind for me.  That just sent chills down my spine. There was a puppy born 2 years ago that has been being trained daily, specifically with me in mind.

ECAD called me a few days ago to confirm my arrival time and needs and to ask some questions.  She asked what exactly I see when I get to a step, or curb, etc.. So, I let her know that I have no depth perception due to my loss of sight in one eye.  So, a crack, bump, step, line, curb...they all look flat to me.  She let me know that they have trained the dog to nudge me when a curb or step is coming, then it will place its paw over my foot and guide me up.  HOLY CRAP!!!  Also, the dog will guide me around anything on the floor that I might not see (toys, shoes, etc..).   It is just so incredible.
   I received my welcome packet a few weeks back.  They stressed how mentally and physically exhausting the training is.  They provided me with 5 pages of commands to memorize before I arrive.  It is a lot of work.  However, Im in the home stretch.  Just fun stuff now: meeting my dog, buying its new gear, enjoying all the freedoms and comfort that come with my new "helper"...So I thought.  I have been reading more and more on ECAD's website about how difficult it is for clients to get funding for their second dog.  Today I got a letter.  It tells about a woman whos dog got cancer.  She raised the money to treat it, but the treatments did not work.  So, she had to raise the $8500 again for ECAD and wait another year.  When I have not even experienced the joy of the dog yet, I am thinking beyond that.  This animal will be able to help me with just about every task I have to do, it will KNOW me better than anyone else ever will.  As I / If I acquire more deficits, it will be trained to help me with those as well.  But as I age, so does it...  There will come a day that it can no longer help me.  In ECADs letter, they suggested every client set a goal of raising $2000 a year and keeping it aside for when the time for a new dog approaches.  So, the battle isn't over.  It was my hope to have a fundraiser annually to help someone else each time around. Little did I know it would be me.  So, as I go through this process, please keep me in mind.  I still have donation links on my website: www.mybeautifullifewithms.com  .  I will also be planning a fundraiser and do plan on holding clinics/demos on how to work with people who have disabilities/service dogs.  I will gear these towards schools, communities, health care staff, first responders, etc...  I will do those on donation basis and put all funds towards the sad day when I need a new companion.
So, anyway...TWO WEEKS to Team Training.  I have so much to do.  Next week I have my 6 month MRI.  I cannot even believe it has been that long (after having over a dozen in a year).  I also have an appointment with my Neurologist and my General Practitioner.  Ive been getting splitting headaches and we are trying to work out what could possibly be going on now.  My doctor put me on anti-seizure meds.  I took them once and cant remember half the night.  So, back to the drawing board.  Of course Team Training is right in the middle of my Tysabri infusion window (has to be every 4 weeks) and even a few days before treatment I go rapidly down hill.  So, Ive had to start adjusting appointments 3 months ago.  On the home front.. I know all my veggies Ive been slaving over in our new green house will be ready

, my beautiful flowers are blooming everywhere

, the pool is at the perfect temp.

Its such a NOT convenient time to go.  Oh, and we have a surprise(!!!) litter of new baby rabbits.

Im going to be a mental disaster there.
As I go to sleep every night, an arm around each child..I wonder how Im possibly going to do it, be away.  I had to leave them a lot last summer.  I hated every second, but I had no choice.  This feels like a choice.  Its terrible and exciting and stressful and I guess it will all make me a better, more capable person, which in the end is the goal...I think.

Chipmunk

So I sit down for breakfast with the kids... because although I always want to sleep in badly, I drag my body downstairs with the first one awake and wait for the pitter patter of the others.  Im sitting at the breakfast table with my 3 1/2yr old son, expecting the usual conversation of cereal bowl color and episodes of "jake and the neverland pirates"! Etc...and  he says "mom, when you get your dog im going to run out to the backyard and..." I interupt "im going to race you out to my dog and im going to beat the pants off you".  He arches back in his seat, has the smile of a chipmunk with its cheeks full of acorns, he snorts like a pig and starts laughing carefree and crazy.  In between giggles and snorts he says " no mom im gonna beat your pants off".  Its one of those times I want to cry my eyes out but im too busy laughing.
Do you jog or run with your kids? I cant.  Play tag in the backyard? I cant.  Race them to the bus stop maybe? I cant.  I dont have the balance to run.  Do you know how restricting that is when you have 3 young kids? I have not run since May 15 of 2013.  I remember the day.  It was perfect (if only I knew HOW perfect). I chased them all over the lawn of the newport mansions.  we played like kids, as every parent and kid should do once in a while.  I  know its been years and years for some people, but i LOOK fine.  I should be fully capable.  Theres absolutely no reason why I shouldnt be able to do this simple thing. Anyway, I will soon be able to do that again...with the help of a dog.  I got an email from East Coast Assistance Dogs the other day.  Theres less than 30 days until my Team Training.  I will graduate on August 6 and (hopefully) come home with my assistance dog.  Life will become "normal" again.
Although im getting used to my "new normal" , I dont think my family is yet.  I think...think... most of the time im capable and confident and sane.  However, sometimes I just cant get out of bed.  Ya know when you just feel like you cant get out of bed? Thats me, except I CANT.  I looked at the calendar last week and said to my mom "didnt we have plans last Tuesday? What happened to that"? She replied that it was "my day off" (the day i couldnt make it farther than the couch). There are other days that I scream and yell because no one does their share and I cant do everything for everyone and nothing I do is good enough and.. and.. and...  We still have some adjusting to do.
So speaking of adjusting, my doctor put me on a new anti seizure medication to try and control my headaches.  He believes its my nerves mis-firing and this medication will prevent that.  So I take it.. the beginner, baby dose.  Ugh..  (my advice, never plan to go out when taking a new medication for the first time).  Long story a bit shorter.. I remember only parts of the evening and the parts I remember were begging my husband not to call the ambulance,  dry heaving for what seamed like hours and everywhere I went spinning.  I snapped back into reality early morning and.. panicking.. asked al where my car was and if the kids ate dinner and if they were in their beds and such.  I didnt have anyone in the car and would never have insisted on driving but I was so sick and dizzy I could not even function.  Big lesson learned.  So, needless to say, im looking for some alternatives.
That about sums it up for now.  Not much new info, but keeping everyone up to date.  I plan to walk you all though dog training (as best as im legally allowed).  So, stay tuned.

Time, questions and civility..

  Today is April 19. I sit on the back deck in the evening sunshine enjoying a drink with my dad.  We converse lightly about the late winter this year and local happenings.  However, I am plagued, mentally, with thoughts.  I haven't been able to concentrate, or sleep, in days.
  I got the official diagnosis of MS on April 18 2013.  I was in a hospital room in Newport, RI.  Somewhere unfamiliar, away from my little ones for the first time in their lives, completely alone, unable to walk or even really move.  On one hand, time has flown (like it always has).  I cannot get over that it has been a year.  This time last year ( A few days prior) I was sitting in the exact same place, looking forward to our apple trees blossoming.  I LOVE apple blossoms.  I think they are one of the most beautiful looking and smelling sights I've ever seen.  I had a 1 yr old and a 2 yr old.  I was fit and healthy(So I thought).  I was full of life and energy.
  On the other hand.  What a LONG year. I still, sometimes, have to choke back the thought "WHY ME"? and "WHY SO EXTREME"?  But..I know those thoughts aren't healthy and I know that we aren't given more than we can handle.  So, apparently I have set the bar high with what I can handle.  I often, lately, as I approached my year mark wondered why my lingering symptoms haven't gone away like most people that have MS has.  I asked my optometrist if I could back down on appointments because, to much of his hope and dismay as well, my vision is not improving.  I have decreased my Yale visits and my MRIs to every 6 months.  Which is huge compared to over a dozen in the past year.  Now..  I just have to grow accustomed to what I have and what I can do.
  I am a Do-It-Your Self er at heart and have not let this disease take that away.  I just got done renovating my bathroom, down to using the water cooled tile saw.  I proved to myself that I can still do it.  However, its definitely not like it used t be.  The saying "measure twice, cut once" for me, is more like "Measure twice, cut once, measure again, cut again, get a new piece and try again".  It involves hammering fingers and bending nails and even sometimes drilling fingers.  But it gets done.  By me.  And it feels great when its all said and done.

   This time of year also brings back other memories.  I blame my Grand Dad for starting  a long line of fliers.  He was Navy Air.  My Uncle, Restorer of sea planes in Washington State. My Dad, Air Force.  My sister and I grew up under the wings of my dad's Cessna.  They were some of my fondest memories of childhood.  My Grand Dad was a Crew Chief and Tail Gunner in a PV-1.  He missed actual WAR by two weeks.  The Atomic bomb "saved" him.  He also missed his first Grand child by two weeks.  He passed away at the end of March in 2003.  I usually go on a commemorative flight on March 30th every year.  I missed the past two years.
   My husband also has always been a flying enthusiast but I was the one that introduced him to the love of small aircraft by taking him up on one of my March flights.  We have gone to many aircraft related destinations since then...  Military Air Shows, Thunderbirds, Blue Angels, Red Bull Air Races, Etc..  I decided to make my dream a reality recently and take my flight physical in order to get my private pilot licence.  Its just another thing to conquer, since I cant conquer "THIS". I got my eye DR to write a letter of recommendation.  I was confident that this would be easy.  Then, the flight examiner began asking too many questions and then asked for a letter from my MS Specialist.  As part of the physical I had to list each and every time I have been to a Doctor or hospital in the past 5 years.  LOL.  That is where I stopped.  Maybe in another 5 years I will try again.  One other thing I cannot conquer. :(
  So, for now I will stick to the car passed down from my Grand Dad.  We love to take it out for cruises and to visit nearby airports.  Whenever I drive it up to an airport I think of my Grand Dad doing the same, years back. I am sending it in for a paint job next week and after that am having it detailed with a PV-1 on the side.  I cannot wait!

  Other than that...  I just got through reading a book on Civility.  Amazing really.  I love self-help kind of books because they really open your eyes to a lot of things you swore you already knew.  I loved the book.  I loved what I learned.  There are pros and cons though.  I believe I have become a much more patient, politically correct, understanding, civil, polite person from the knowledge I have gained.  Unfortunately, I also learned how uncivil and unknowingly impolite other people are. So, do I share my new found knowledge to make them better people or secretly test my skills by reacting to them civilly despite their ill ways?  Something the book does not advise upon...

Beginning of The Process

   
 I got the call!  I am tentatively slated for Team Training with The East Coast Assistance Dog Foundation for the end of July.  This means I will have to go live at their facility in Dobbs Ferry, NY for two weeks.  Each candidate in the Team Training class will be training with the dogs from 8am to 5pm every day, except Sundays.  Four or Five days into training, "my" dog will be assigned to me.  The dog actually chooses the candidate.  So, I do not get a choice in which dog I get teamed up with.  Personality, temperament, height, talent, etc.. are all taken into consideration.  Since my dog will be used for balance, the taller ones are actually easier for me.  Also, mine will have to have strong focus and be very child friendly.  It will have to be able to concentrate on work through the chaos of our busy house and kids.  Something they have never done before is train a dog to stop at every doorway, top of stairs and change of terrain.  I have very poor depth perception.  So, its important the dog notify me when there is a step or something coming.  It will also be able to pull the kids in their wagon.  I use the wagon a lot and they want me to be able to have a hand free, rather than one on the dog and one on the wagon.  I will also be able to latch the kids onto the dog in busy places so  that they don't run off.  Its going to take quite a dog!!!

      Im sure there are many people in my every day life that are wondering why I need a dog because I look fine.  Its days like the last few that I could really use one.  I haven't left the house in 3 days.  Yesterday I didn't get up until 4pm.  I watched the kids from bed and the couch because my body was just completely uncooperative.  Especially the few days prior to my infusion.
    Last week, I was feeling great.  I went into a store I have not been in before, looked around, and as I was coming out didn't see the step down and tumbled out onto the curb.  Things like that...it would be nice to have the dog there to spot me.
   On a different note... I had such a great time putting together my fundraiser (Cruise for a Cause/Whine for a Cure) last year that I wanted to make it an annual event.  I wanted to raise money each year for someone else to be able to get the aide of an assistance dog.  I had a thought the other day that maybe I could donate the money to someone locally in need...  If anyone has any ideas...
    I was stuck sitting in my parents bathroom for an hour while the kids were playing "truck wash" so I picked up and read the Readers Digest.  There was an article about a Marine who threw himself over a grenade to protect his fellow soldiers.  He ended up surviving, but having to have over 30 surgeries and still isn't back to his old self he said "Im at my new 100%".  What positivity and optimism.  Each day I strive to be my 100% and each day it might be a different 100%.  Yesterday, I didn't get out of bed but twice.  I watched my kids watch TV and play on the floor.  I read them books and made sure they were fed.  It wasn't much, but for that day, it was my 100%.  Hopefully today is a different 100%.
   

panick

I will start this short, yet thought invoking post, by saying I probably should not be posting after 2 glasses of wine.  Or, in fact after a wonderful dinner and a long overdue date night with my husband for that matter.   I should just be settling in and calling it a night.  But something is on my brain and it wont let me settle.
  On the way home from dinner our conversation trail lead us on to money.  I said that I never imagined I would ever be on disability.   My husband mentioned how no one ever thinks they will be.  Then he says "but at least it eliminates the panick".  What does that mean, I say.   "The panick of not being able to find or hold down a job with your illness, the panick of not being able to drive to work,  the panick of finding and affording someone to take care of the kids.   It allows you to be home with them".  Really?  "Im glad it eliminates your panick", I say and thats where my night ended.  Stopped short. Right on the Litchfield-Goshen line.  At first I was furious at him and then i realized,  if yoou have never been through a life changing event like this, you see things differently.   There will always be panick.  One day I was fine and the next, hour by hour, I couldnt hold my kids, I couldnt walk,  couldnt use my arms or even write.  It didnt just happen once.  It happened 3 times.  When I was in Yale, on "super human" steroids and plasma transfer, I lost my vision... within hours.  It can happen again at any time. Thats panick.  My brain and my body digest it different now then they would have used to.  And, as much as I can think of, there is nothing that will take that feeling away.   Not a tysabri infusion, not even a cure.  If not ms, it could be cancer.  It could be a heart attack.   It could be anything.  Life is fragile. Im not a hypochondriac.   I don't live in a sheer state.  When I tuck my kids in at night and curl up in my safe warm bed I know how good I have it.  I know im blessed... but...im never at ease.  Maybe that will change.   Im still in my first year here.  Those of you with ms or some other life altering event... does that unsettling feeling, that panick, go away.  Or, does it always feel like something is looming?   Its interesting to observe other peolle and what they panick about and how they panick.   My body is so used to it that im not sure how i would cope without it.... but it would be nice!

Setting The Bar

    I must always, always remind myself that I have come a long way.  Still, I always thought my weeks would have steadied out by now, my symptoms would have steadied out by now.  I wasn't scared when I lost sight in my eye because I knew it would come back.  I knew the pins and needles in my face and my tongue, eye, neck, etc.. would go away (they haven't).  I knew that I would be the 'Poster Child of MS".  I would do the incapable and unthinkable with this disease.  I would run marathons, I would have the body of an athlete.  I would be travelling the country doing speeches and talks about what Ive conquered... Its been 8 months, to the day, of my diagnosis.  Its not quite like that.
    It got discouraging for me, as any challenge does that I cannot meet or exceed.   Then, in one moment of clarity.  Those moments have always puzzled me.  You think you are in tune with your life and have an excellent open view of what's going on.  Then, you get these moments where you see things in a whole  new light.  Well, In my moment of clarity, I realized, I AM the poster child of MS.  I am the poster child of MY MS.  It is such a strange disease in that I am nearly fine one moment and then nearly debilitated the next.  I realize that when I walk the dog around the icy backyard and manage not to run into anything or fall, I am the Poster Child of my MS.  When, at the end of the day, Im SO tired and my leg cramps are SO bad and my kids want to be carried and I just want to go get the wheelchair from the garage so I can sit and pull them around like I used to, but I don't, that I am the Poster Child of my MS.  When I drive to Hartford in the pouring rain to bring my 2 yr old to a Dr apt all by myself and manage the parking and the doors and the unfamiliar places, I am the Poster Child of my MS.  I know, I mentally lowered my bar, but the things I do are pushing me, challenging me, they are the maximum of what I can do.  And I realize that many other people out there with this disease are their own Poster Children as well.  I have come up with a system to keep me going.  I start the day running.  I make an unattainable list of things to get done.  I go, go, go.  I set my bar as high as it can go. I try to out perform the average person each day, no matter how I feel.  I push through the tired and the hurt and I just do it.  So, the days I physically or mentally CANT.... Im like a normal person, not supermom.  For now, it works.
  This is a good week for me.  Ive accomplished so much here at home.  Ive even been able to watch the kids and the house and the dog while Al has been gone for the week.  Some points were not easy, not easy at all.  Amelia had her annual check up at Connecticut Children's Medical Center with her Cardiac Specialist.  She has two holes in her heart.  One not so worrisome, but one actually in the Pulmonary Vein right at the entrance to her heart that causes the blood to flow into both sides, instead of just the one.  This causes stress on the right side of her hear and will make it larger over time.  We have been checking on this since in utero and finally put a surgery date on the calendar, next January.  The doctor would like to do it before school and I would like it done in the winter so she has time to heal and doesn't miss summer fun.  The surgeons say this is a "routine" procedure....but you know how that is.   Sometimes for a patch on the heart, the surgeon can go in through a vessel and apply the patch, but this is a bit more complicated, so they cant.  Its been on my mind since before her birth, but especially since my diagnosis.  When I was in the hospital I thought "how am I possibly going to be able to stay with her if I cant take care of myself".  All the doctors are so incredibly compassionate and accommodating though.  They assure me they will keep me stable for this and I can stay with her for 24/7 the week she is in the hospital.  Now, what about my dog....
Amelia's condition is an Atrial Septal Defect and this video is great for showing part of what's going on. http://kidshealth.org/parent/interactive/atrial_it.html#cat141
  The next day, after I took Amelia to CCMC, I had a specialist apt at Yale North Haven.  Appt went great.  The Dr actually said she saw "improvement" in my last MRI for the first time since my first MRI.  YAY.  I will go back in another 3 months for MRI and visit.
  We made another big family decision and decided to adopt a "family" dog.  Since our Annie passed away, our kids have been aching for a pet dog.  We figured getting a family dog would also  ease the stress on MY dog when I do end up getting it.  Within a matter of days, thanks to a friend, we found the PERFECT dog.  She is a children loving, obedient 5 yr old black lab.  Susie has adjusted very quickly to our family and absolutely loves all the attention.  She also helps me out here and there getting around the house.  Im amazed at how much easier it is to get around with her and Im sure will be unstoppable with my assistance dog. 

Unwelcome Familiarity

  Im not sure what's worse, the diagnosis of MS or becoming familiar with the disease. Along with a 5 day migraine,  I started getting "clumsy" mid week last week.  I went to put a baking sheet on the stove and rammed it into the side of the counter instead and all the potatoes shot off onto the counter..just misjudged it.  I also broke about 4 wine glasses last week alone just by misjudging the distance in between while putting them away and CRASH.  Next, I started losing motivation and energy earlier and earlier throughout the day, began tripping over all the kids toys on the floor, bumping into things, etc...  By the end of the week I had pins and needles throughout my body, couldn't walk too well after 6pm or so and had terrible pain in my neck and back.  So, though I knew there was nothing anyone could do if my symptoms were a result of a new lesion, I figured I should report in with my doctor regardless.  The farther I get from my Tysabri infusion, the more likely I am to get a breakthrough lesion.  The doctor thought it was urgent enough to send me in to get an MRI and see her that week.  They also monitor the tysabri patients closely because of the high risk of PML.  So, off I go for a day at Yale.  By this point I was SO exhausted.  I was looking forward to my nap time in the MRI chamber.  The techs are really great about "checking in" while im in the chamber,  to make sure im OK.  However, everytime they did, It would snap me out of a dead sleep and it would take me a few seconds to realize where in the world I was.  Now, those of you that have had an MRI know its not real easy to sleep through.  The surface you lay on is very hard and the machine, with its beeps and other sounds are very loud.  It has become comforting to me. Half way through the MRI, when they pulled me out to inject the contrast, I let them know this is approximately my 20th MRI, I'm sick, I have 3 young kids at home and I could really use the rest.  So, basically, LEAVE ME ALONE.
   Following the MRI, I was scheduled for an appointment with my MS specialist to review my results.  The appointment wasn't for another 45 minutes so I was looking forward to another opportunity to nap.  No sooner than I curled up in my chair in the waiting room and got that warm sleepy feeling, The nurse called me in....REALLY?  Ugh.  I met with the nurse that takes your vitals, then the one that enters your current medications, then the one that enters what's currently going on....then the doctor.  She had not received the official MRI results or report form radiology, but she could access the scans on her computer already.  So, she would review them now.  She asked if I wanted to see the images as she went through them and I said sure and as she sat there explaining the different areas and views and.....I realized, I was not anxious as I once was.  I was not worried about or dreading the results.  I just wanted the bottom line.  So, here it was:  no new lesions, no signs of PML, nothing.  The doctor ordered some blood tests and suggested I go downstairs to the walk in clinic for some antibiotics for a possible sinus infection.  Off we went...  With labs done and antibiotics prescribed, we headed home.
  It took about two days for me to start coming around.  I just have to assume a sinus infection is what it was and just hope I don't begin becoming antibiotic resistant in this whole process. Saturday, I just barely made it for the last Goshen Holiday Market of the year.  I did great and sold a TON of soap. I am ever expanding my products and now have bath bombs, bath salts, scrubs, facial bars, body butter and more.  My newest products are wine soaps(a Chardonnay and Cabernet) and soaps and fizzies with Activated Charcoal.  Its become quite a fun hobby and profitable too, at least through the Holidays.  You can purchase limited soaps on my web site, www.mybeautifullifewithms.com. By Sunday I was much better and was able to begin preparing for Christmas Eve.  I had one more dreaded activity before I could concentrate on my Christmas preparations though.  My infusion.  Luckily, Ivory LOVES going to these dreaded things.  We get Dunkin Donuts on the way and look through magazines and watch movies for the two hours Im hooked to the IV.  After that was done, I was free to enjoy the Holidays.  My Mother in Law was visiting and Al was home.  So, there was no reason to rush.  We shopped, got mani pedis, etc...
   We started festivities by all putting on our new Christmas pajamas, making hot cocoa in our new mugs and watching a new movie(Despicable Me 2).

 I love making new traditions with my family.  Ones we can look forward to and count on every year and, most importantly, create memories.  The next night was Christmas Eve.  We hosted, in our new home, and had all our family for food and celebration.  Much to the kids delight, we even had a visit from "Santa".  One of the older guys from the Goshen Fire Co. (who resembles the jolly old fella in real life) spends the night before Christmas travelling from house to house visiting all the children.

  Our community, here in Goshen, is like no other. It is truly "The Land of Milk and Honey".  I cannot imagine raising my kids anywhere else.  People remark about how far it is from everything.  I think that is part of its charm.  Even being far, I can get my fresh milk, world class chocolates, Nodines smoked deli meats, Maple Syrup(I only use that, not sugar, so we go through a lot) and more right here in town.  I can still leave my kids in the car while running in to the post office.  Most of the people that work in the town are our neighbors.  My oldest can ride her bike down the road or walk through the woods to her friends house with no concern.  There aren't many places like this.  I also love the comfort of knowing that when I am not around, that the community will be there to look after my family.  Now, or in the future.  They will make sure my kids are happy and safe.  I can envision the future when our son is belly up to the bar some night at AJs and he gets a tap on the shoulder from one of our friends telling him to get home before his dad has his ass.  LOL. 
   So, Anyway, we spent Christmas Eve in our new home surrounded by our loved ones.  It was almost midnight by the time everyone left and we cleaned up and I knew Santa's time was running out for the evening for he was about to drop from exhaustion.  So, I had Al start the bedtime routine while I stuffed stockings, put out gifts, wrote letters, ate cookies, powder sugared the floor and, finally, packed..that..stinkin..elf..away.. one.. last.. time.  I am hoping he gets lost in the shuffle and forgotten about by next Christmas.  How in the world, when your children go to sleep with you and wake up with you are you supposed to have time without them looking to move that thing?  A ritual developed, obviously, by someone with way too much spare  child free time on their hands.
   In our household, we like to instill in our children, the TRUE meaning of Christmas.  In fact, every year,  I read them a story about the real meaning of Christmas.  I made a point of only getting them one gift each.  I do not know what happened.

 

  Santa finished up....I mean I finished up and went upstairs to tuck everyone in and they were all sound asleep :(  Though I missed watching them all flutter to sleep, I kissed them all and wished them a Merry Christmas.

The morning was no different than anyone else's house, a flurry of wrapping paper and candy.  But, in me, it was different.  It will always be.  For better AND worse. Regardless, It was the best Christmas ever!