Welcome!

Where to start?  It seems like it has been so long since I have written a blog post.  So, I guess I will start with what I have been up to:
Last month was officially my last month as President of the PTO at our local Elementary School. This decision, obviously, came with many mixed emotions. I loved loved loved the position, the close relationships with teachers, getting to know 176 kids.  However, with a small town such as ours, even small roles become politically involved. That part, I will not miss. I will terribly miss the others.  Also, with all my upcoming events, I suppose I had to give up something.

So, all this free time now..what am I doing with it?  Well, The Goshen Farmers Market starts up this Saturday.

 This has been my "baby" for 2 years now.  A very passionate group of locals started this market up years ago. They are dedicated and "never-give-uppers" but the market turned into a few vendors sitting around on Saturdays in a school parking lot for a couple "never-give-upper" customers.  So, (you know me) I felt compelled to help.  It's been 2 years and with the help of the market founders and some other key people we are a CT State certified market.  We are one of only a few markets at a CT Vineyard. We have live music, kids activities, vendors galore, etc...it is wonderful....and A LOT of work.  I have taken on "the official" role of Treasurer and Marketing Director.  However, there is much more that keeps the wheels turning: music coordination, craft and activity planning, insurance coordination, emails, event listing social media, press releases, branding, vendor recruitment, sponsorship recruitment, website updating, etc, etc...  So, is THIS weekend,  If you are local- PLEASE BE THERE.  At least check out our website www.goshenfarmersmarket.com  or Facebook at www.facebook.com/goshenfarmersmarket
These were my accomplishments this week:

My other accomplishments this week? I finished my first book.  Yes, I wrote a book!  It's just a "starter" book to get the feel of what it takes to go through the publishing process.  If I am lucky, in 6-8 months, I may possibly get a reply from one (or maybe more) of the 30 or so publishers I sent the manuscript to and I might get an offer to have it published. By then I will hopefully have completed my second (It's currently all in my head) and then my third...which will take quite a while I imagine.

What else?  Al and I are graduating next week.  Some of you know that we have been taking a training course for the past 11 weeks.  Next week we will become certified Foster/Adoptive Parents through the state of CT.  http://www.ctfosteradopt.com/fosteradopt/cwp/view.asp?a=3795&Q=498606.  So, there is a chance you will see us with another child..maybe more over the future months and years.  We are not allowed to post pictures of our foster children on Facebook and we are not allowed to tell you about their history, their family or why they are in foster care (nor do we want to).  I think back to one of my favorite books, Choosing Civility; The 25 rules of considerate conduct(a must read).  Just because someone is curious about something doesn't justify their question or deem it appropriate.  We just hope our friends and family will welcome our children and know how happy and fulfilled this venture makes us.  This is something we each always wanted to do and now that we can't have more kids ourselves, what better time to possibly help others.  We thank you, in advance, for your support and respect!

Relating to the above,  here is my soap box lecture / pet peeve for this blog:  Making people feel welcomed.  I have spent a lot of time thinking about this lately, how some people are welcoming and comforting towards others and some are not.  It takes a lot of strength and the ability to put yourself aside to actually welcome people into your life.  To share your life with them and make them feel comforted and a part of your life.  I believe a lot of people aren't capable of this because of such things as they are too self-absorbed, or too consumed with their own agenda.  Or, they are cold, insensitive or compartmentalized to some degree.  When people are like this, it doesn't make others feel welcomed or comfortable and when you're not comfortable you leave.  Sure, sharing your life openly sometimes comes with its downfalls.  It makes you vulnerable, it opens you up to "favors" because people feel comfortable and...sometimes...people feel comfortable that you DON'T want to.  All of those have their positive twists though.  I think feeling vulnerable is a good lesson, it's humbling. Favors, well as long as they are well intended, are only time or money. As far as people feeling welcomed into your life that you wouldn't necessarily want to feel that way?  You are leading by example.  You are teaching others how to behave with grace and sensitivity.  Just an observation about life that I never would have noticed prior to my new life, the one with MS.  I'm done.

OK.  So, I always go to extremes right?  Speaking of that, I decided I should refresh my driving skills.  I believe I am still a safe driver.  However, with my limited vision, I want to be sure I can handle unforeseen incidents.  So, I signed up for a program called "Street Survival".  It is held at Thompson Motor Speedway and its next weekend.  I CANNOT wait. We are making a trip of it and also visiting the Worcester Ecotarium.  The event coordinator for Street Survival, instructor and race car driver coincedentally only has vision in one eye also.  Cool, huh?  Well,,,,, you know what I mean.

I guess I should mention my MS huh?  It is holding steady.  I do have many more good days than bad lately.  Though, I still have daily nagging symptoms, I seem to be able to push through them better. My one weak spot is headaches.  Extreme headaches.  It was recommended that I go to a headache specialist to determine if they are nerve related, ocular or maybe cluster but I really see the doctor way too much.  For now, I hang in until I just feel like I am facing 2 options: 1. death or 2. Hospital.  Then, I call up Al and he puts me on oxygen for a bit and gives me a pain pill. That seems to take the edge off.  Otherwise, I am just plugging along.

I am coming up on A YEAR now that I have had Crane, my Service Dog. I still cannot comprehend that.  Time flies.  Each year I have to get re-certified and pass a Public Access Exam to remain able to go into public places with her.  The laws are cracking down and no longer are Therapy or Emotional Support dogs allowed to go out into restricted public places.  So, this exam and re-licensing is important.  After my third year, Crane is officially mine :)  I am very lucky to have her.  She is SUCH a help and comfort.

I will leave off on that note, as I have a trillion things to do.  The kids are now in summer camp and when that is over it is school FOR ALL OF THEM. WOW!!!!  Think of what I will be able to take on then ;)

Cordially,

    Tina

www.mybeautifullifewithms.com

"Living The Dream"....

     I recently visited the website of an old friend. They invite the "everyday person" to live the "good life".  They offer to bring "these people" opportunities usually only available to the "inner circle".  Yeah...  I kid you not!  This friend's statement of "living the dream" always struck a nerve with me.  Maybe because I was a single mom struggling to get by and provide the best I could for my daughter and I.  Or maybe because this phrase he used wasn't used as I would use it, but as an elitist.  I think he thinks everyone's idea of "living the dream" is "living HIS dream".  I am Living The Dream too.  I have an amazing family, incredible kids, a wonderful home, great neighborhood, etc....  I could go on but you all know my motto, My Beautiful life, with m.s..  I can guarantee the majority of people that know me would not want MY dream, MY beautiful life.
  On the other end of the spectrum,  I also hear other people talk and judge in regards to disability.  I suppose I used to do this as well.  As I said in my last blog, in words of a friend: There are just things you don't understand until you are humbled.  I used to think "why are THEY on disability?".  They are taking advantage of the system.  Well, now here I sit, on the other side of the fence.  Most people that see me, I am SURE would disagree that I should be on disability with ALL the things I can do. After all, I look fine.  However, everyone's situation is deeper than just a look.  Could I get a job?  Probably. Would it be difficult? Extremely.  Could I do the job I used to before MS?  Not a chance.  People on the outside see what they want.  They do not see the things I CANNOT do.  Some days I cannot walk. Some days my vision is so off that I do not drive and I cannot type because I hit the wrong keys.  Same with filing papers, I just cannot see straight enough to differentiate between files.  I cannot do simple things in my life, like bike, or skate, or even run.  Take a second and imagine that!  I have 3 kids.  I c-a-n-n-o-t run, bike or skate with them. Sure, we do other things and I boast that fact because there are only "other things" that I can do with them.  That is a price I pay.  That is a price I pay to be able to be home with my children and get the small amount of Federal Income the government thinks I need to get by.  I make the best of it.  As a matter of fact, I am SO good at making the best of it that I honestly feel I am LIVING THE DREAM.  Huh.  Look at that.  Full circle!
More to come soon.....

I am not the person I used to be

I get feedback and concern from the realism of my blogs. People think I'm not in a good place, obviously people that do not have an incurable illness.  Nonetheless, here's to them:

I am not one to brag.  I believe in being humble and simple and down to earth.  That being said:
I pride myself on taking care of my house and 3 children.
In a mere 13 weeks my husband and I will be approved foster/adoptive parents.
I am a Beekeeper
I, obviously, am an avid blogger and strive to help people by it's posts
I am the local elementary school PTO President.
I am The Goshen Farmers Market Treasurer and Marketing Director.
I am a member and on the House Committee of Torrington Country Club.
I am a Volunteer/Representative for ECAD (Educated Canines Assisting with Disabilities)
I, and my family, are Home Handlers for ECAD and take Service Dogs in Training home on the
   weekends.
I make Goat Milk Soaps and All Natural Body Products
I help local friends establish their marketing techniques and websites.
I have 2 dogs, more rabbits than I can count, a goat, a lovely tank full of tropical fish and HAD (as of
    a month ago, a horse).
I am a flying enthusiast, whenever money allows.
I am an artist, whenever time allows
I am a member of the local Congregational Church (though I would like to attend more than I do).
I am a wine enthusiast and hold an advanced degree (with Merit) from the Wine and Spirits        Education Trust.
I have a passion for preparing and cooking exquisite meals for family and friends.
I love to garden and get my hands dirty and watch things grow.
I could go on... and on... and on..


One of my family members came to see me the other day and told me that "people at her work talk about you"...I roll my eyes...  "They are worried about you,  they say  you do too much".  Uhh Huhhh.  You know when you don't continue to work on a skill, you lose the ability to do it well.  If it wasn't for the hours and hours I spent writing and re-writing the same thing, page after page, in my journal while in the hospital and after I got home, I know I would still not be able to write. So, I do stuff.  Everything.  Part of it might be fear, yes.  If I let my brain take a break I feel there is a chance something, some lesion or something, could sneak in and get it...to slow me down.  Some people watch TV (movies here and or a mini-series), some people take naps, are avid readers, sit down for a drink with friends (I do this occasionally), have a long commute, etc...  I simply take all that "static time" and fill it with other things.

I do all of this, not at all like I once used to.  I also don't react to things or people like I once used to. Then again, I am not the same person I used to be... far from it.

Normal bad isn't SO bad

   I wonder, sometimes, why I cannot just have a "normal" bad day or "normal" bad week anymore.  I recall bad days from the past and, granted some were BAD but, for the most part they really were quite tolerable. These last few weeks have not been great.
   I had to put my horse down last week.  My horse.  My horse that I got when she was one year old and I was in eighth grade.  My best friend...my only friend sometimes.  We took on the world together.  She was there through first boyfriends... and first break ups..  through high school, through college, through actual broken hearts (not just first break ups that you think are actual broken hearts but you come to realize that was so so SO far from reality), through moving away from my family and across the country, through divorce, my first child...remarriage..moving 15 times in 14 years...my second child...third child :)  :)  and through my diagnosis of MS.  I retired her months before my diagnosis.  She showed severe weakness in her hind end and I knew it wasn't fair to ride her anymore.  My friends (amazing friends) offered for me to retire her on their farm across town.  They had just one other horse on a farm full of goats.  Horses aren't like dogs.  They are gregarious and therefore don't like being the only horse.  It wasn't too long after that that I got sick.  I hadn't been able to even walk out to see her much over the past two years but I know she was taken care of well.  I knew, each winter, for the past few that it might be her last. Though I used to tell everyone, when they asked how long horses live, that Princess would live forever.  It was my way of never having to think that someday she might be gone.  Simple as that.  She will live forever.  I remember, in college, we used to go jogging together.  I would load her in the trailer, take her to The Kentucky Horse Park and go running.  We would make a point to always stop by a pay phone (yes, pay phone) and call home to say Hi.  I remember being in class on a beautiful day and the next thing I knew I would be on her back galloping through the KY Bluegrass.....  So long school.

    My friend called to let me know that her horse (Princess's pasture mate) was on his third day of colic (severe intestinal distress of one type or another) and might have to be put down.  Images instantly flooded through my head. I pictured her hind end weakness, here rear suspensory ligaments nearly giving out, watching her walk occasionally like she was walking on glass because her feet were uncomfortable, seeing balls of hay all over the ground that she had to spit out because she didn't have enough teeth to chew hay anymore.  She had three medical events in her lifetime that she should not have recovered from ... but did.  Now I pictured her being alone.  All alone...through a bitter cold snowy winter.  I couldn't do it.  I called back my friend.  She said the vet was there NOW putting Princess's friend to sleep.
   I laid in the field with her as she took her last breath.  It was SO cold.  It was snowing.  It has snowed each day since.  The wind has howled.  The nights have been SO long.  I laid there with her until her body wasn't able to keep me warm anymore.  I pet her and talked to her like I haven't been able to do in years. Princess and I were together for about 26 years. If only she could tell me stories from our past as well, I would have been there for another 26, just listening.
   Yesterday was my Tysabri day and Neurology appointment.  Its been 6 months since Ive seen the doctor.  She was thrilled to meet Crane.  She asked how I was doing.  "Tired...VERY Tired" I say.  "Like so tired you just can't snap out of it?".  "Yes".  "So tired you feel you cant cope?".  "Yes".  "So tired you feel your legs cant hold you up?".  "Yes, yes yes"...  "Are you taking anything for it?"  My lovely husband mumbles cynically from beside me "coffee, lots of coffee".  Yes, I admitted to her that I'm up to about 2 if not 3 small to medium coffees a day.  So she says "No, I mean medicine?". WHATTTT?????  There is medicine for that??  Amazing!  I found out there is also medicine to help my leg spasticity so hopefully I can sleep and there is medicine for the prickly feeling in my face.  It wont make the feeling come back, but might prevent the feeling that I have a cactus jammed in the right side of my mouth.  I cannot stand taking pills, but for these things, I'm sure the heck going to try.
  We talked more about Crane.  She wanted to know everything. I told her all about ECAD and the process of raising money and going through training and how much Crane helps me.  This time SHE was amazed.  She said she wanted to know all the details because she has a notebook that she keeps of all the positive things she hears.  Now, imagine that.  She is one of the top Neuro, specifically MS,  docs in the US. She has computers full of info.  She has teams of doctors working under her.  Yet, she keeps a small notebook of positive things she hears about her MS patients.  If THAT isn't depressing nothing is.
  The rest of my week was interspersed with the same level of events, though I am just too low on energy to recall them all.

HAPPY New Year....

     I will try this again.  After my last blog I received FB messages, phone calls, emails and texts from friends, family and even my Pastor.  Thank you!  Thank you for your concern.  As I explained to people, I have a "Beautiful Life", A wonderful, beautiful life...but I am also realistic.  I write this blog for a few reasons: 1. For my children.  So they can look back and read a journal of my life. 2. For my family and friends.  So they can know and understand what exactly Im going through.  3. For me.  So I can get the thoughts that swirl around in my head on "paper" and off my mind.  4. For others that might be going through something like I am going through. So they can compare and have someone to relate to and maybe be inspired by. 5.  For the future.  Hopefully some day each blog post will be the basis for a chapter in my book.

  So... If my blog was all fluffy bunnies (got 'em)

.. and pig tails and flowers (yep)

...and rum with honey fruit and berries (check)

....and warm puppies (Uh Huh)...

(All these since last blog BTW)

Then what good would that do anyone? It wouldn't get the thoughts to stop swirling in my brain, my book would be unrealistic, no one dealing with what I am would be able to compare, my family would be in the dark and my kids would look back and wonder why if I felt so good and did so much why I DIDNT do so much and was so different from other parents.
My "Beautiful Life......with ms".  That is what Multiple Sclerosis is.  Some days are good and some days, not so much.  I live with it all.  My family deals with it all.  I write about it (almost) all.  And, you read it all (those of you that want to). 
I thank you, everyone in my life, for understanding it all!
HAPPY New Year! Good luck with all your resolutions.  I will observe and learn from them and get mine ready for May 18th.  The turning of my year.

Happy NEW Year???

  Some people go by Calendar year, some go by fiscal year.  My years now begin and end on May 18th.  That is when my old life ended and new began. That is when I got struck with and formally diagnosed with MS.  May 18th. Four months to go until my second May 18th.  Thanksgiving and Christmas come and go, no big deal.  I don't know why New Year's Day is a national holiday...because too many people are hung-over? I turned 40 this year, just another day.  Hold on...Ive got to go take care of a crying child....

   OK....I'm back.. (I would have never been able to do that a year and a half ago)...  "MS doesn't kill you", "It wont leave your child without a mom.  You will be there to help them grow up".   This is what friends and family told me.   MS doesn't kill you....  you just wish it would sometimes.  I had a friend die recently. Her memorial is tomorrow.  A friend that had a terrible life dealt to her and her AND her husband died too young, too young to raise their kids, too young to deal with bills and with mortgage payments and retirement and.. and...  She left me feeling almost jealous.  How could she get out of all of this so easy?  I know.....life and children are a blessing and I treasure every second I can...but I am tired.  I am disoriented.  I have half my vision.  Half my nerves function normally.  Half the time I feel like I am drunk or hung over.  All the time, overwhelmed.  That will never change.  

THAT...is a terrible way to start a blog.

THAT... is light and happy compared to the mental places and thoughts I've been/had.  Part of it, I'm sure was a drastic change in physical life and part was mental symptoms of MS.  But, I remember, clearly. I wish I didn't remember SO clearly..  those days and weeks and months while I was diagnosed, in and out of hospitals, fastly losing ground.  Not being able to walk, to lift my hands, to hold my kids, to see.  I also do, luckily, remember things coming back. I remember how much work I did with my therapists to be able to walk normally and speak normally and write... oh my god how I missed being able to write ..and how tough that was to get back.  I had a journal and just wrote phrases over and over again in my weak, sketchy hand writing.  Even now, when I write a school note for my daughter, or a shopping list for my husband, I look at it a few times and think how terrible my penmanship is now.  I guess , though, there was a time when it was worse.  I suppose everything used to be worse.

    I like staying in now.  I like staying in for days on end.  I like lazy days of doing nothing but house work and taking care of the kids (which means 99% of my day is busy cleaning, playing, prepping meals, doing laundry, letting dogs in and out, emailing, taking care of neighborhood children).  I don't tolerate the cold very well.  I get exhausted and overwhelmed running errands with all the kids.  Maybe its just winter blues as I seemed to be able to take much more on in the summer  months....or maybe something has changed...or is about to?  There is unstoppable fear of that.  The doctors were finally able to stop the rapid onset of symptoms, but for how long?  When you throw an apple in the air, it comes down.  That is just a fact.
   Moving on...

  My husband and I asked the kids prior to Christmas if they wanted gifts from us, or a getaway instead.  They were unanimously in favor of a road trip.  They LOVE hotels.  They don't care where we go, they LOVE it.  So, I booked a hotel with an indoor pool and some attractions nearby and off we went.

 These little overnights are a great way for us to re-connect as a family.  We leave the cell phones and tablets and tv, etc..  So, we ended up going to a Brunch with Santa at Sturbridge Village (I figured it doesn't get too much more genuine round the holidays than Sturbridge and since we like to instill the REAL meaning of Christmas, this would be the place).  They had a brunch of ice cream, waffles, desserts, cocoa and more.

We had brunch with the jolly old man and then took on the pool and hot tub at the hotel, Sturbridge Host Hotel.  They soaked up every second.  We went to a fireside dinner at the Oxhead Tavern where again they got anything they wanted to eat.

 After dinner we infested the pool area again and then resorted to our room where we followed through with our hotel tradition of a book reading. .. This time though, since it was so close to Christmas, we donned our new Christmas PJs. I read a book Al picked out a week or so earlier called The Book with No Pictures (I highly recommend it).  It was in perfect theme for the no phones, tv, electronics...or pictures..

 After the book we broke out the glow sticks (another hotel tradition) and feasted on cold leftovers.  It was then that my son snuggled up beside me and said "This is THE BEST night EVER".  I asked why, although I already knew he would go on and on about Santa and the hot tub and the hotel adventures.  He replied " Because I got to snuggle with my mom while she read a story and then I got to eat a cold hot dog".

       Now....  Its not like I don't spend time with them or read stories to them or tuck them in every night, but it is why I LOVE these little road trips.  Every little thing takes on more meaning.

The next day, before heading home, we visited Yankee Candle,.. for HOURS.

 Another wonderful trip!

     Seeing as I like to stay in, we hosted our Family Christmas Eve.

 It was wonderful.  It was amazing to see the little ones play like me and my cousins once did.  I remember past Christmas Eves at my Grand Parents, the cousins would run and play for hours in the basement, only being summoned up to leave them and drive home.  I am blessed to be able to witness that.  I don't think we would have if someone else hosted Christmas.  .  .  I read my kids their annual (MY annual) Christmas story(to follow).  We threw reindeer food out on the lawn and I tucked them in. They fell asleep in under 15 minutes.  Memories I will keep forever.  Memories I am glad, despite my "deficits" to be here for.  I guess that is it.  Good outweighs bad this time.

      I took a month off from just about everything in my life to slow down and feel less overwhelmed and create more of these memories.  It is amazing how few of my friends and family and community that I thought were so close DIDN'T question me sucking back from reality, public, obligations, social scene, etc...  Then again, I always correct people when they say "You are not alone".  Really, no matter how supported you are, you ARE alone in your battles, your glory, your memories, your life. So, you should make the best of it, for YOU.

The Christmas Story, as posted in the New York Times years and years ago

You and I are aware of this, as are our older boys and girls; but to very young children the language is not quite as comprehensible. To them, Christmas is a time of excitement, glamour and Santa Claus. That is as it should be. Nevertheless, the reason for our celebration is a deeply religious one, and even little children should understand this.

With that thought in mind I once wrote the story of the first Christmas, told in very simple language for little girls and boys. Judging from the response to it, it filled a need. So, each December, we re-print it. Here is the story:

Once upon a time, far, far away, and long ago – long before even your Grandmother and Grandfather’s Grandmother was born – this story begins.

There was then a little town called Bethlehem, and many people were travelling toward it from all the country round. But all those men and women were not travelling as we do nowadays – on trains or in cars, and of course not by airplanes. They were all walking – miles and miles and miles; or riding on donkeys; or on the backs of camels.

Now among all those that were going from their homes towards the little town of Bethlehem were a man named Joseph and a young woman named Mary. Mary was riding a donkey and Joseph was walking beside her. Joseph was very anxious because it was night, and the stars had already come out in the dark blue sky, in that land so far away and so long ago – just the way the stars will come out over our house on Christmas Eve. And Joseph was worried.

He knew they must find a place to sleep and very soon, because Mary was going to have a little baby and its mother must have a warm and cozy place to rest. Still, though they looked everywhere, there seemed to be no room for them anywhere. Every house and every Inn was filled. But at last, when he was quite discouraged, Joseph found a stable, in which they could be warm and rest. And there, with the sweet smell of hay, with the soft warm breathing of donkeys and perhaps little lambs about them, Mary’s baby was born – Jesus, the little Christ Child. Then Mary, his mother, wrapped Him closely round and round with white linen, as they did to little newborn babies in those days in that land, and laid Him – not in a crib, but in a manger, right there, in the stable. And the animals, warm and quite, lay or stood nearby.

Outside the stable, over this Christ-Child’s funny little bed, high in the dark blue sky a star seemed to shine, with greater brightness than any other star in the heavens. And the shepherds, tending their sheep far off, thought the star beckoned them to the Baby Jesus. And three great kings, also far off, thought that the bright star in the blue sky beckoned them too, to come to where Baby Jesus lay. So they all followed the star; and at last it led them to the manger.

There they all knelt down and worshiped Him, and the three great kings laid precious gifts of gold and rare and fragrant perfume before the little Baby Jesus. And now, every year since Christ was born we remember His birthday, and we celebrate it, and call it Christmas!

There are things you just dont get until you are Humbled

Last week we took our kids on yet another family adventure.  I cant do the things I used to: Like bike or hike, or run, or ride my horse.  So, we just re-direct our fun.  My new "cause"(like I need a new one) is raising money for and representing ECAD wherever I can.  So, we took a trip down to Dobbs Ferry New York to meet with ECAD.  I had anxiety about how Crane would behave being back at her old stomping grounds for the first time since she got placed with me.  She was an angel.  After ECAD we, of course, had to stop by LEGO LAND.  The kids LOVE it there.  If you have kids and have never been, its definitely worth the trip.  Crane likes it too.  She even goes on the Disney style ride where you shoot at the monsters and save the princess.  I even think she enjoys the 4D movie more so than I.  She loves when it rains or snows in the movie...she tries to catch the drops as they fall in the theatre.  Like Ive stated in the past, I can no longer see 3D.  So, instead of being discouraged, I was able to sit there for show after show and watch the amazement on my kids (and dogs) faces.  I would say its better than actually watching the movie.
  My husband had a wake/funeral in Old Saybrook. that night and the next day. So, I opted to sneak in some family time and reserve a room in Essex so Al wouldn't have to travel as far and we could be together as a family.  Ends up, after sitting in traffic for hours, having car trouble, fighting rush hour, stopping for food and bathrooms etc...  We missed our appointment to drive my new dream car, which happens to be in Fairfield and is the only one in CT.  We also missed the wake:(.
 To the kids surprise, I had researched hotels and, though expensive, made a reservation The Griswold Inn in the center of Essex. 

They had a 2 story, free standing, Family Cottage in a little brick courtyard right off the main St and across from the main Inn. 

Being very late, pitch dark, super windy and rainy there was nothing to do but stay in the cottage.  My kids LOVE hotels.  We spent hours playing.  They pretended the claw foot was a pirate ship, had a "fruit loop piñata", played firehouse and with glow sticks, etc..  The most fun, though, was when it was finally time for bed.  Of course they were all revved up from sitting in the car and excitement of the surprise trip.  So, I snuggled up with them on window seat, turned off all the lights, rolled up the curtains so we could look out onto the quiet main street of Essex and,  we told stories.  We told stories for hours, until past midnight.  We talked about the storm and how light travels faster than sound and about the old days when the street would be filled with horse and carriages.  It was thunder and lightening and so so windy.  They finally said they were tired and wanted to go up to bed.  When we woke up and looked out the windows, they found out that in our little courtyard was a Christmas shop and a Candy shop.  We spent the day in town walking around, seeing the boats, shopping and riding the steam train. 
  There hasn't been a day that has gone by since that the little ones don't mention the trip an ask when we can go back and its not for the train or the candy shop or the toy store.  They had the most amazing time on that window bench, up til midnight, hearing stories and laughing and talking.  THAT is what it is all about.  THAT is where memories come from, the ones that stick.  THAT is what is important.  That is also very promising for me because no matter how bad my symptoms get, I will probably always be able to do things like that with my kids.

 

 

  It also makes up for other times that aren't so great.  We went out last night for what I thought was going to be a great time.  The kids were settled with my mom and dad, we weren't going far, we knew friends there, it was going to be perfect...maybe expectations were too high.  Anyway, the music was too too loud.  So loud, Crane couldn't handle it (first thing she has not been able to handle).  Dogs hearing is almost 4 times greater than humans and can register 35,000 vibrations per second. (http://www.k9puppydogs.com/html/the_sense_of_hearing_of_dogs.htm).  So, for the first time ever,...I had to put her in the car.  Bad set up now.  So, its dark inside, the music is super loud, there are strobe type lights, I don't have crane to guide or balance me.  We have friends keep approaching on our right to try and talk (firstly I cant see them, second I cant hear them).  I wanted to eat, but would never be able to maneuver through the tables to the food.  I wanted a drink but same thing. I wanted to do like crane did and try to bolt.  All I could see was the door.  So, I made a bee line.  Almost out, I found the coat closet and took refuge there.  Hoping no one would come by and draw attention to me, I figured I could just shake it off.  After about 30 minutes, a woman rounded the corner.  Great!!!  ....She says "Are you OK?"...."Yeah yeah Im fine..."  She replies "Well, Im not.  Do you mind if I join you for a few minutes.  I just need to escape for a bit".  We exchanged smiles.  She told me of her diagnosis of Parkinsons and acknowledged my diagnosis of MS.  There we sat, in the coat closet of a Country Club, talking.  Best conversation I had all night. Ends up she worked in the same job, for 20 years, that my mother in law worked at prior to her.  Crazy.    The band took a break and we finally collected ourselves and went back in.  I tried, but that same sense of ...overwhelmment(???) hit me.  I still didn't have my dog, still couldn't get comfortably to the food or bar without the fear I might make a fool of myself.  So, this time, instead of the coat closet I jus called it a night.  Its something that probably no one else in the room noticed, or was even concerned enough to pay any attention to know something was wrong.  But to me, my world was upside down.
All I can do in times like that, when I get home and try to sleep, instead of rehashing the night, is think about my night in Essex with the kids and how wonderful it was.  I cant stress enough, not to compartmentalize, not to forget the bad, but appreciate like crazy all the little tiny good things.
   On a more positive note, ive mentioned before that I am on a mission to educate people about service dogs, the disabled, people with invisible illnesses and how to respect and help and understand them.  Well, Ive been taking Crane to school these past few weeks.  I started with just letting her be a dog (vest off). 

I introduced her to the kids and then put her vest on and told them and showed them some things that she does for me. Some of the kids still call them "tricks", when she retrieves a water bottle, or cleans up all the legos and puts them in a basket, opens the door, gets my shoes, etc... but I try to reinforce that they aren't "tricks"  its her JOB. I explained to them why I have her.  Its about a month since I brought her for her official introduction.  She is now like a rock star!  Seriously!  Everywhere I go (even trick or treating through the pitch black neighborhood

, I hear "Cranneeee Crannneee....Its Crane"!  In school, I can now walk through the halls with her vest on and the children know she is working and although its hard for them to resist a pet or a kiss, they know I will eventually take her vest off and let her say hi.  We have had a few "parent involved events" and it is their first time interacting the Crane as well.  At first they are in shock to see a dog in school.  Then they are more at shock when their children are happier to see crane them then.  At last, you see in their eyes when they realize this is the dog the kids go home talking about all the time.  I can hear them say to their parents "you cant touch her.  See?  Her vest is on.  She is working".  and I realize...Im doing it....Im educating a community.  Crane and I are teaching these kids something that will last forever as they go out into the world.  Something that they can teach to others.  Crane also teaches me things about her on these trips to school.  As her hearing is so much better than ours, she can hear an upset child from about 4 classrooms away.  I feel like each time I go to school, something brought me there that day because there is at least one child we help every time (She has stopped children from crying, helped children wait patiently, helped children get to class without their mom, helped someone get over their huge fear of dogs, ....I could go on).  Then again, when you have 156 kids in one place, I guess odds are you will ALWAYS have upset ones.  I know I do at home and I only have 3.  :)  She has amazed everyone she encounters with her compassion, among other skills.

Again.  I am blessed.  Theres just no other way to put it.  I was talking to someone the other night and they said "there are things people just don't get until they are humbled".  I get it!

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.