End on a good note!

   To catch up any new followers....Im young, 38, I have an active (did...still do compared to most) life.  Ive got a loving and supporting husband and three beautiful children.  I live in an amazing town and part of an incredible community, of which I am very involved.  I am a member of our local church, treasurer and marketing coordinator of our Farmer's Market and President of our PTO.   I try my best to raise my kids right.  I get our veggies from a local CSA and our milk from a local dairy.  I make our own yogurt, cheese, laundry detergent, fabric softener, etc..  I even make my own Goat's milk soap and sell it locally.  One of my favorite things to to do is cook.  I LOVE it.  Trying new recipes, sourcing ingredients, etc..makes me ultimately happy.  Other things that make me ultimately happy are cruising in my new old classic car (just inherited it), flying and taking small day trips with the kids.
 

    One of my friends says that I live in a dreamworld, and I do...every minute of every day.  I have to remind myself that I have it so good, because I also have Multiple Sclerosis, bad.  Yeah, everyone says I look great, I know, but the effects I feel are all around me and never go away.  There are some people that find out they have MS because of vision changes, or slight numbness in a pinky.  Not me.  Those of you that follow the blog I wont bore with the details.  My blog is chronological, backwards.  So, you can read through my diagnosis process.  I have deficits that effect just about every way I live my life, every day. I am facing battles that I never imagined I would have to fight with MS, especially now, as I try to enter back into life.  After I comprehended this disease, where it has put me and what the future holds I thought I was through the worst.  looking back, first of all, I mainly stayed home ....in the security of my own house.  The only pressures were that of the seven people of our household, which was plenty.  Now I am out and about and facing new struggles.  I am being met with resistance and friction in every direction I turn. Everyone, including my family, is having a difficult time letting me back into my life.   Where people were once confident about my skills and my ability are now filled with doubt and hesitance.  I know what I can competently handle.  Even if Im given something slightly out of my range, I have always risen to the challenge.  I dont expect people to let me fall on my face, but I do expect them to have confidence in me and give me the opportunity to try. I know its a fine line, but I hope others, and myself can figure it out. I now have a glimpse of where some of this underlying 'rage' that is supposed to come with MS stems from.  The inability for people to have the trust and confidence they once used to in you.  The other part of the rage for most people I would imagine comes from fear of the future unknown and the 'why me'?.  The last one doesn't weigh on me as much as some, but I do have my moments.  When I interact with people that do not know I have MS, I am treated totally different.  
    My husband and I went to a networking cocktail hour this week.  It was at at The Interlaken Inn, somewhere which I had interviewed for a job the week before I got diagnosed.  It was a high functioning, high stress, physically active job that I could never do now.  When I got home from  Newport, I was supposed to attend a trial event.  Needless to say, that weekend came and went and I remained in Newport in the hospital.  At that time I was unable to use my hands or even walk.  So, I had to drop the ball (which I NEVER do). So, flash forward to the other night.  We had some cocktails, mingled with the General Manager and upper staff, talked cars and planes and wine and local venues and, of course, soap for that's what brought us there.  The Inn and Spa may carry my goat milk soap.  I showed them some samples and they were impressed.  During the course of the evening, we shook hands briefly with the executive chef.  He is the one I interviewed with.  He seemed not to remember me. However, in living with my damn super human strength conscience, I asked to speak to the chef before we left.  When he finally came up, I figured the managers would step aside but they were obviously too curious.  I reintroduced myself and the chef admitted remembering me after he saw me earlier.  I apologized for never contacting him about the job and proceeded to briefly tell him why and that the offer was in fact very important to me.  I left off with telling him how I use my husband for balance by  clutching to his arm and having him lead me, how I have no vision in my right eye, etc... I stopped and they just all fell silent.  Then came the usual, apologies and junk,,,, blah blah blah, but after that, they even looked at me different and shook my hand different and spoke to me different.  I hate that.

     As I get farther from my initial diagnosis and some people that either don't know me or are comfortable with me let their guard down.  They lose their constant positivity and express their real thoughts and views.  I think this is good, to an extent.  After all, its what I wanted, right??? I've realized, through all of this, that we all carry around negative traits, but is it really everyone else's responsibility to deal with them, or is it our own? Should I have to deal with someones insecurities? False realities? Lack of etiquette? I think people should do more, have more willpower, to be a stable structured intelligent and kind person to others.  After all, you never know how long, or at what capacity, you will be here.  My goal is to be the best person, friend, confidant, etc.. I  can be, to keep my weaknesses from interfering with other's lives.  That sounded like a good ending place didn't it?, but I have more.  Good stuff now.

   So, I made a big step(after being cut off from society for the past 6 months) and took the role of PTO President.  In some schools I'm sure the position would be more demanding.  In our school of 140 families, its just what I need  to get back in the swing of things.  To start the year off, I had to give a little talk at the first school wide family event, Curriculum Night.  No big deal.  After teaching riding and lecturing all over the East Coast (and parts of the West) and my work at the winery, this was no big deal.  I met my daughter at the bus stop that afternoon, after spending all afternoon at the doctor and trying out my new muscle relaxant to ease the stiffness in my neck and back, and she says "mom, do you know its Curriculum Night tonight?" WHAT????? Well, of  course I do.....  I have 45min for this muscle relaxant to wear off, think about what I want to say, get there and make a complete fool of myself.  I was a mess.  My issues: walking up to the mic in front of everyone without swaggering or tripping,  grabbing the mic and not the air next to it, not falling over the cord, speaking without slurring my speech and sounding like a drunk and of course... Saying what I need to say.  After 30 minutes of pacing around at home giving my entire family hell for nothing, I headed to school.  Once I left, I wished I had brought my husband or daughter to lead me, but I was just too nervous to think of that.  I walked in and already felt overwhelmed, being stopped here or there with questions or hellos when all I wanted to do was orient myself with the set up.  I waited my turn and walked up as straight as I could, my blind eye to the audience.  The principal discreetly put the mic into my hand so I couldn't miss it.  As I surveyed the audience, I saw so many people that know me, what I've been through, that have read my blog.  I couldn't have been happier at that moment to live in such a small, caring community.  I made it through my small, yet big, speech.  The principal came and took the mic from my hands and I made it back to my spot.  Done.  I'm back in the game, and it wasn't so bad after all.    

   One more bit of good news.  I got accepted as an official ECAD client.  I have been in the application process with East Coast Assistance Dog program for months.  I finally got invited up to their facility in Dobbs Ferry, NY this week for a personal interview.  I  would have gone alone, but I kind of wanted to get the sense of what they would be placing a dog into.  So, I brought my chaos with me.  Loaded the van with Al, my mom and the two little ones.  They had a great time, even got to play with and walk some dogs themselves.  ECAD went thorough everything with me.  They took about 2 hours.  They even gave me a tour of where I would be staying if I was to come up and train with a dog.  She made a list of all the things I would need a dog to do.  Besides stabilizing and bracing me it would be trained to stop everytime there is a change in terrain (curbs, steps, etc..) so I could assess the situation, since I have no depth perception.  The dog would also open doors, turn on and off lights, retreive items from the floor, get my shoes, pull the kids wagon, go flying with me, be calm around the farm animals, etc..  I  could even have rings on its harness for the kids to hold (or worst case scenario, clip them onto) when I go places with them.  It can help me in so many more ways than I originally thought.  ECAD has 3 types of dogs: Golden Retrievers, Labs and Lab-Dane mixes.  I LOVE the lab danes.  Unfortunately, those two will be gone by the time I get my money raised and theres 2 litters of Goldens being raised before the next litter of lab dane mixes.  So, I could be looking 2 year out, unless I settle for a Golden.  So, then came the fun part...trying out the dogs.

   I tried two lab danes.  They were both great and so calm and focused around the kids, though the first was a little wiggly.  The second was a yellow named Chelsea.  She was wonderful.  It felt so good to be out there walking normally with her at my side.  I could go on, but I'm already a bit long winded tonight.  We then talked $.  It costs ECAD $12000 to raise one of their dogs from birth to placement.  They ask their clients for  $500 non refundable deposit and then for them to fund raise $8000 for ECAD.  The fundraising, verses the client just cutting a check, serves a couple purposes: they know, if the person puts that amount of work into fundraising, they will put that amount of work into the dog, it also involves the community that the dog will be placed in and proves their support of it.  The money also goes to the clients room & board for which they have to stay on site for 2 weeks to train with the dog.  So, the next day I got my call.  Once I raise the money, I am officially in line for a dog. So......everyone out there that wished they could have done something along the way for me but weren't sure what...here's your chance.  Donations can be made in my name directly to ECAD and are tax deductible (   https://ecad1.org/donate.html   ).  When donating, online or by check, please make sure to put my name Tina A Torizzo as the client, or donations wont go to me!!!Any amount is accepted. I will also be putting together some fundraisers, with the help of friends, to include a dinner, dog walk thon and maybe even a Fly-In/ Car Show.  So, stay tuned and spread the word, please. 

ECAD's whelping facility is in Torrington, CT and they are currently seeking 'puppy petters' for their newest litter.  Contact them to set it up.  They even have a LIVE puppy cam at: http://explore.org/#!/live-cams/player/east-coast-assistance-dogs-cam

Taking life by storm

I feel like, besides having MS and all, that I am back to Blog #1. I am not only surviving, but I am taking life by storm and even more so now. Every detail and experience seems richer, has more meaning. Almost annoyingly so. I almost wish everyone went through this experience so that they could have the same outlook. So that they could see what and who is most important. So they could live their lives in the moment and really pay attention to what matters most. In a perfect world, I guess.
So, last week alone I did more than most people get to do in a lifetime. I went to visit the farm with my family. It was one of those gorgeous fall days. My horse was grazing peacefully and I just couldn't resist. I grabbed her halter and lead, pulled her over to a nearby rock and hopped up on her back. It has been so long. I have owned her since she was a year old, 1988. To be on her back was so familiar. Her smell was so familiar. It was wonderful, like coming back home after being away for so long. Like being whole. Nothing felt wrong with me while I was up there. I will never be at the point where I can compete again, but I don't have to. This was enough!

I also took to the skies again, thanks to a dear friend.  Flying is in my blood.  It is part of my DNA.  My Granddad was Navy Air and Dad was Air Force.  Every man in my family had his private pilot's license.  My uncle used to restore float planes in Juno, Alaska.  I have fond memories of flying with my dad when I was young and with friends as I grew up.  All the vacations my husband and I took were flying related.  Like going to see the Blue Angels or the Red Bull Air Races.  AJ is doomed when he gets older as he probably cannot distinguish between womb sounds and that of a jet engine. And Amelia, she LOVED her first flight!  Anyway, I began flying again this week.  I was a bit hesitant, but strangely more at ease and free than I have ever felt up there...great...now that I don't have a prayer of getting my license.  If my vision miraculously comes fully back, my license will be my first mission.

Al and I celebrated our 4th Anniversary.  I cannot believe how much we accomplished in 4 years.  Good thing we were slowed down this year, who knows where we would be.  We went out to dinner to celebrate....without the kids.  Our time alone together is few and far between.  So, we made a break for it and let mom and dad take over at home.  We left the house without a plan and headed for Litchfield. I started to realize, on the way there, that I have not eaten out, only at a friend's, since Ive been sick.  I was starting to get very nervous and was thinking we should  just grab something 'to go' and head home when we saw that Arethusa Farm's La Tavola was finally open.  We have both been waiting.  So, our minds were made up.  We went into the dairy shop first and they told us we should hurry over to the restaurant because they book up every night.  Right...  It was 5pm.  So, we head over and what do you know, they are almost fully booked for the night.  Over the course of the night, they proved why.  It was fabulous.  The food presentation was amazing, combinations were delightful and the staff was over the top.  They were so gracious and respectful.  Al and I decided to change seats early into our visit.  We were seated by the front and though I had a great view of outside, I couldn't see anything going on inside the restaurant.  I was afraid someone was going to sneak up on me with our next course.  I was also afraid of setting my glass down and misjudging the edge of the table, burning the end of my sleeve on the candle, tripping on my way to the bathroom, etc...  We started dinner with a glass of Proseco, a tradition of ours, and I quickly realized that it is not as easy for me to sip out of a flute than it is a wine glass.  I also quickly realized, as I looked over the menu, that if I was going to enjoy the evening, I should not look at the prices.  So, we didn't. 

Before my main course, I decided to make a break for the restroom.  Its when I get into unfamiliar territory that I get flustered.  So, even though I thought I could see the door from the table, I asked the waitress.  She told me it was down the hall and the first door on the right.  "First door?" I confirmed.  She  offered to show me the way.  On my way there I envisioned the trip back.  I saw myself colliding with a waitress because I couldn't see her and food flying everywhere.  I was comfortable enough with our waitress, from conversing with her throughout the evening to tell her I had been sick most of the summer and this was my first time out in 6 months and it was my goal not to make a fool of myself.  She replied very matter of factly and respectfully "and we will not let you" and at that she showed me where the tiny lock button was on the inside of the restroom door and located the light switch for me. When I was ready to make my journey back to the table, I took one last deep breath and got myself ready for my solo.  But when I opened the bathroom door, there was a waitress there.  She held out her arm and said "may I walk you back to your table, maam?".  I was totally caught off guard.  I didn't know what to say.  I just grabbed on and let her lead the way.  She brought me back, put my napkin on my lap, pushed me in and said "enjoy your dinner , maam".  I told my husband then and there they we will never dine anywhere else.  I had our host send the waitress back over before we left.  I tipped her and let her know how much her gesture meant.  She admitted she does homecare too and knows when someone needs her.  I told her we would come back again and ask for her to be our waitress.  I still don't think she had any idea of how much she made my night!

   Listening to the conversation of some women next to us at the  restaurant secured my thoughts on how I want to, and how you should, live your life.  She said "Ive just given up my heart to so many people, Im just not going to do it anymore".  Wow.....Isnt that what its all about?  Putting your heart out there? You just keep doing it and, yeah, sometimes you get hurt but you just keep on doing it or you just wont be who you want to be in the end...



   

Making Memories

My last post was August 17th.  Time is just flying by.  I am striding through new limits each day.  I remember writing the last post and remember how bad I felt, that I feared I was relapsing again.  How long ago it seems.
    I had a visit to the optometrist this week.  I had a brief 2 hour eye examined then he told me, sounding completely disappointed, that my optic nerve is pale and atrophied and he doesn't expect me to get any more improvement from my right eye.  What? Disappointment? Frustration? I actually saw the tech reach for the flashlight and shine it upwards into my eye.  I saw the shadow of her hand waive in front of my eye.  I can make my way down a white hallway or around a stark white bathroom with my left eye covered.  I cannot see much, just shadows, but its more than my MS doctor ever predicted.  The eye doctor, Dr Lesser, is wonderful and one of the best around.  He said he has seen people that have had their vision improve with the optic nerve this pale, but it is very very unlikely.  Guess he doesn't know me very well!  As a last ditch effort, I asked if by chance he knew of any doctor, ya know, maybe in some remote part of the world, that was doing some experimental procedure that was getting good underground reviews.... he said "unfortunately not".  I will just have to go by my luck, or as I recently found out, lack there of. 
   In other news, I had my third...yes...third...  infusion of Tysabri this week.  I cannot believe it has been 12 weeks already and I've had no new symptoms and my brain hasn't turned to mush and I'm even improving still.  I even drove to the infusion center myself, in Waterbury, on the highway.  I wasn't brave enough, yet, to get it on my own.  So, I had a friend meet me there and sit with me for the two dreadful hours it takes.  Doesn't seem SO dreadful with  friend though even.  The infusions work to prevent future attacks, but there is nothing to help speed the process of recovery or regain deficits from attacks.  That's all up to your body... and mine has been doing pretty well.  Ive been getting out and about.  Whenever I run into anyone I know that knows about what I've been through, they say " you look great". I always feel pretty darn good until I hear that.  Then, I realize I don't feel THAT GOOD.

Like I mentioned, though, I have been making great strides.  I have been able to really play with the kids and take them places and care for them.  I Did great on my 5 days of Al being gone.  I even felt up to taking a little trip this week.  We booked a room at the Wake Robin Inn, watched the vintage auto parade, attended the Falls Village Festival and even went to Limerock Racetrack the next day for the Historic Festival. pits with me at the race track.  Every second , means so much now. I must admit, it isn't as easy as it used to be.  I have no depth perception.  So, I have to be very careful about where I walk and step,  my balance still isn't perfect.  So, I usually hang onto the back of the wagon or stroller while Al pulls the kids.  I do get tired easy and have to sit and rest a lot and if the sun is out, forget about it.  I'm doing it though and it IS getting easier.

  We had a great time.  I cant believe I'm actually making , memories with my kids again.  I even took a while to teach them how to roll down a hill while we were at the track (they have great grass rolling hills there).  They are going to be able to look back and remember me swinging on the swings with them and riding on my shoulders at the car show and walking through the pits at the race track.
  Its still not nearly as easy as it used to be, for Al or I.  I usually grab onto the back of the wagon to keep my balance as Al pulls the kids.  I have no depth perception, so I have to choose very carefully about where I walk and step.  Hills and inclines are getting feasible, but not easy.  I get tired easily and need to sit often and rest, and, if the sun is out... forget about it!  Al, of course, never complains.  Like carting stuff around for two young kids isn't enough for two adults, he pretty much has to do it on his own.  I always was nervous with each pregnancy that our child would have some kind of deficit.  I thought this because only certain people could take that on, mentally and physically.  I knew Al was one of those people.  He would, and COULD, take on anything that came his way.  I guess THIS was the challenge I foresaw.  I'm happy our kids are healthy.
  I made it to the third level of application status for my assistance dog.  I have to go to New Paltz, NY for a one on one interview in September.  Some days now I think maybe I don't even need it now, but I do have my bad days and I never know what the future has in store either.  I have a feeling of complete disorientation when I walk into somewhere new now. On my way home from my infusion, I stopped to use the rest room at a Dunkin Donuts I have been in 100 times.  Well, they re-decorated and... they were mopping the floors.  I had to try to navigate around unfamiliar territory over a slippery surface.  Maybe I would have not been so overwhelmed with my dog at my side, even just for re-assurance.  I will see what they say.  After all, they are the experts.
  Speaking of experts, I have been discharged from all my home care: visiting nurse, Physical and Occupational therapy.  I am on my own!  Mixed feelings about that... Its a big scary world out there, but its mine for the taking, I have no restrictions!