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!





Thanks and giving

    It is the time of year to give thanks.  It is the DAY to give thanks.  We ALL, every one of us, have so much to be thankful for.  I especially do.  This year it seems, ironically, I have more to be thankful for than any other year.  There's my family.  Composed of my three incredible, beautiful children that I am blessed to have.  There's my husband, who is to blame for them :).  My parents, whom gave up their lives as they knew it and moved in with us and help endlessly to raise our children.  There's my friends.  I have so many more this year than any other.  So many that rally around my family and I.  There's my health.  Yes, my health.  It could be so much worse.  I am able to enjoy life and my family and I'm so thankful for that.
  Ive carried with me a list of grudges and regrets throughout my life and even those have become blessings and things to be thankful for.  After all, everything happens for a reason.  So, opportunities missed and people gone from my life (besides death, just no longer involved in my life) all lead me to where I am now.  So each and every regret I now see as a blessing.
    During this Holiday season I've been trying to open my eyes towards others.  Ive been trying to do more good deeds and be more giving to others.  Theres been so much tragedy and loss in the world and so much  hype about "good deeds" and "paying it forward". We hear so many stories of people doing good for others.  Yet...sadly...I haven't seen much of that in my every day life.  I see anger and spite and aggravation.  It makes doing good very discouraging.   Ive been trying to do a good deed every day.  I wish we all could.  In my "new life" I try to show appreciation to every person that does something good.  After all, whats a few dollars spent on a gift card or a few minutes to write a thank you note.
  Speaking of positivity and optimism.  I have officially reached my goal for an assistance dog.  +ecad(www.ecad1.org)  informed me I have raised and exceeded my $8500 and I am at the top of their placement list. They are currently looking for a suitable dog and will let me know as soon as they find one.  My intention is to make my fundraiser annual event to raise funds for an assistance dog for someone else that might not be as capable at fundraising.  Also, any donations made to ecad in my name still will go directly to another clients dog.  So, if you still want to donate, you will be helping someone else get their dog AND helping me get mine sooner.  Thanks to my local connections, The event got a lot of press exposure:  http://www.registercitizen.com/general-news/20131012/goshen-pto-president-tina-torizzo-finds-solace-in-writing-after-ms-diagnosis, http://www.registercitizen.com/general-news/20131012/goshen-pto-president-tina-torizzo-finds-solace-in-writing-after-ms-diagnosis. 
   I cannot wait to get the call that a Team Training has been scheduled.  I have been starting to talk it up to the kids and figuring out what the first thing we will do is.  I'm thinking maybe go on a hike or maybe take a little run.....nothing big, maybe just around the backyard or to the bus stop.  We are now saving for our "accessories".  We will need a balancing harness, which can run upwards to $400.  We need collars and leads and crates and beds and an underground fence controller.  I want to take the kids on a big shopping trip before I go off for two weeks for Team Training to get them excited about our new addition.  In a way, its tough to get excited about leaving the kids for two whole weeks, but it is required to train with the new dog.  They plan training every day from 8am to 5pm for two weeks.  4 or 5 days in, they (the ecad trainers) assign the dogs to the clients.  Then the real training begins.  We even go on field trips to get accustomed to the dogs in public.  I took the kids to meet the new litter of ecad puppies.  They are 3 months old and already in work mode.  They do not chew or bite or climb all over you like regular puppies.  They already have manners.  They sit, walk on leashes, use the treadmill, etc... amazing.   ECAD has just recently purchased some Guinea Pigs and a rabbit because they were having a difficult time getting the dogs attention in pet stores.   So, they are doing some in house training with their pups.  Its just amazing what they think of.  My church has decided, though I have reached my funding goal, to continue with their fundraiser.  The children in Sunday school are making dog treats to sell at the Living Gift Market at church.  All proceeds go to ecad.  Its such a great cause.

    My symptoms are holding steady.  Ive had my 6th or so Tysabri infusion.  Besides the headaches and leg cramps everything else is the same.  Still balance issues and pins and needles and vision stuff, but that's old news.  This drug, the one I once almost refused, I am even thankful for.  Its keeping my attacks at bay and preventing any new lesions.  I am due for another MRI next month and hopefully will confirm that.  I Have a friend with progressive MS that was hoping to begin Tysabri and found out she is positive for the JC virus.  Very disappointing.  Tysabri is the single most effective medication on the market for preventing future attacks of MS.
   I have been very busy with the local farmer's market.  We have a Holiday Market at which I sell soap and also help with PR and marketing.  I have also been receiving many Christmas orders for soap.  Its available on my web site, www.mybeautifullifewithms.com and through just contacting me.  I have started making quite the line of products:

I am also working on custom monogrammed MS jewelry to sell on my web site.  Yes, very busy.  Not too busy to take some time off for family and friends.  In fact, we up and left home for Thanksgiving and travelled to Newport.  Yes, where I first got diagnosed with MS.  I must say, last night going to sleep remembering the last time I slept here was kind of unnerving, but I woke up and everything is fine and I am enjoying the break... and even have time to blog!  I plan to actually make up for things I didnt do last time, like take the kids to Cupcake Charlie's and watch the Holiday Lights Boat Parade tonight from Bannister's Warf.  You can find my reviews on www.Tripadvisor.com.

Time to get out there and enjoy!  Happy Thanksgiving everyone!

Winding down

    I stood up to say a few words, in a crowded room full of my friends and "support network" at my fundraiser.  I didn't have a speech planned, but seamlessly rattled my way through a brief history of my illness and reassured guests why they were there.  It wasn't like a wedding, where some friends or side of the family may have something against you.  Or, like a meeting or awards ceremony were people might think you're not doing a good job, or worthy of the award.  Everyone in that room supported me, thought highly of me, was "on my side".  They were there because they wanted to be, for my "cause".  So, how could I feel completely alone?  I guess anyone with an illness or disease feels the same.  Or, even anyone "in touch" with themselves.  No one knows what is inside your head, what you feel, what struggles you go through mentally and physically.
  The fundraiser went great.  The best part, I organized it  I planned every detail, printed every ticket, posted every post, recruited all the marketing, etc... I did have some help with the Silent Auction.  Thank goodness, because it was much more expansive than I predicted.  However, I can still do it!  It was a great night.  Seamless.  Just what I imagined it would be.  Actually, I plan on doing the same thing every year  to raise money for someone else that has MS and is in need of an assistance dog.
   I spoke with ECAD on Tuesday and they told me I was at the top of their list.  I have raised just about all the money they require.  So, as soon as I complete that goal, they find me an appropriate dog or they schedule a team training, they will call.  They told me that they have a long list of clients, but since I am the closest to raising the money first, I would be put on the top of the list.  This made me excited and sad at the same time.  Is there someone out there that needs a dog more than me?  Most likely.  So, am I taking there dog?  It leaves me with some internal struggling.
   I am fortunate, however, that I even was able to attend my own fundraiser.  Beginning early last week I started not to feel well and dreaded another upcoming attack.  Even up until Sunday afternoon I wasn't great.  Luckily I made it and hopefully was just stress kicking in.
  So, what now?  Just back to my stay-at-home mom life I suppose.  I make home made goats milk soap and sell them at our local Winter Farmer's Market, I will carry on as being President of our elementary school's PTO.  I am also trying to work on my web site, www.mybeautifullifewithms.com, where I hope to provide more of a resource for people effected by MS.  I will be custom designing some MS merchandise to sell there as well.  I hope to save up and get my TBird painted before I tuck it away for winter.  I won my first car show trophy with it this past Saturday.  Makes me so proud to drive my grand dads car.

What else?  Only time will tell. 

Whats Been Going On

Well, I figured it was about time for another blog.  Ive been out in the world spreading the word about my upcoming fundraiser and have met so many so many new people.  Some, that even follow my blog already and have never met me.  Its been great and the more I am out there spreading the word, the more I realize why ECAD (East Coast Assistance Dogs) requires fundraising.  It truly is an incredible way of advertising and making sure the candidate is ready to work for their dog.
The Register Citizen ran a great article about the fundraiser , by Hemmings Motor News and by the Brass City Cruisers as well.  Also listed on CT.Now, The Black Top Rebels and more.  The Twilight Cruisers have been wonderful about helping spread the word, and actually made a large donation to the fund.  But you can find the most info on my own site at : http://www.mybeautifullifewithms.com/november-10-fundraiser.html .  Seems like it will be quite the event.  Its even getting air-time on WZBG all of next week.  It might be too cold, or too late in the year for avid Classic Car owners to venture out with their prize possessions, but Im sure we will still get a decent showing and the Wine Tasting Benefit is where things should really get going.  Miranda Vineyard is hosting, Jennifer Devine is presenting a wonderful catering menu, Andrew Jaimeson is the nights musician...and you should see the list of Silent Auction items.  The auction will open at 3pm for the car cruise and final bids must be in by 7:30pm.  The event will also feature two 50/50 raffles, one for each part of the days events and a presentation, at 6:30pm, by ECAD and one of their assistance dogs.  It has been all consuming organizing the activities(kind of reminds me of my job when I used to run the vineyard...I miss it).  It is a bit more difficult now.  Even just driving around and hanging flyers.  Its putting me into places of unfamiliarity and when Im in those situations is when I get flustered and realize how much I AM NOT where I used to be, functioning wise.  However, the more unfamiliar ground I conquer...the more it becomes familiar.
What surprises me is how willing people are to give to my fund (donations, buying tickets, silent auction gifts, etc...) when they hear my story.  Even though I LOOK fine.  I would think people would just look at me and say "well, how bad does she need this, she looks fine to me".  But they don't.  I just posted a link on the facebook page of MY BEAUTIFUL LIFE, with m.s..  It was of an interview with a woman who has MS and how grateful she is of her support network.  When you watch the video she appears perfectly normal and capable and professional, like she could run the world, and then you hear her talk about the things she cant do.  Its amazing to see .....Its just like I feel.  Heres a link to the video :http://on.aol.com/video/the-importance-of-family-support-for-multiple-sclerosis---kellys-story-489140347 
  Ive been driving the heck out of my "new-old" car.  So much so that the breaks have failed.  We are trying a last minute fix tomorrow so we can attend the Borgeson Car Show on Sunday...one of my goals since I got the car.  We attended our first car show a few weekends ago.  The kids loved it.  This car came to us at just the right time.  We are more limited now as to the activities we can do with the kids.  Attending a car show...no problem.  The car is itself is also great for me to drive.  It has a swing away steering wheel that makes it easier to get in the car.  The squared off fenders also make it really easy to see where Im at when pulling in  places... can be a challenge with no depth perception.
  Medically, I seem to remain on an even plain.  No new relapses.  I went for my FIFTH Tysabri infusion yesterday.  I cant believe its been so many.  My MS specialist asks how im doing with the infusions and doesn't like my reply of "well, my brain isn't turning to mush yet".  She doesn't think I should be worried about the high risk of PML that comes along with this medication.  I am though.  I am more worried of having another attack though.  Every time I get a little headache I get scared its going to turn into a 3 day migraine ending in permanent facial numbness or loss of vision...again.  So far so good though.  Nights are my worst time.  It will be a very welcome time when both little ones sleep through the night.  Al and I seem to reverse roles at night...when he is home.  The slightest cry is like lights and sirens to me.  Im out of bed in a flash, half blind,  and ricocheting off the walls and down the hall.  Al only wakes up if I REALLY pester him that its his turn.  I have NO IDEA how he functions properly at work nights.  I think they have 3 minutes from when the call comes in to when they pull the truck out of the firehouse.  It takes me longer than that to wake him sometimes.  At night, as Im bouncing around the house(literally) I often think about the potential of my assist dog.  ECAD makes a soft balancing harness as well that the dogs are comfortable sleeping in.  So, I can just grab on and safely "go to the scene" at night.  OR..I can even send the dog in to retrieve the crying child and bring them back(they wont come down the hall alone at night for fear of monsters....).
  Well, thats about it.  No fun stuff since last post, like sitting on the horse or flying or anything.  Its been all Farmers Market and PTO and Fundraiser.  Fundraiser...I still have 50 tickets to sell... you can purchase on the web site...  you NEED a ticket before the day.  I need to reach my $8000 goal to begin the training process with the dog and I would like to be able to "give back" to all my donors by providing a great night of fun.  So, please come!!
PS- Im having trouble posting pics to the blog site.  So, if you want to see some pics of what we have been up to, go to my facebook page, My Beautiful Life With MS, or my event FB page: https://www.facebook.com/pages/Cruise-for-a-Cause-Whine-for-a-Cure-Wine-Tasting/313818755424067
Looking forward to seeing you all soon

A Day in the Life

The day started as it continued throughout.  It took me 5 tries to throw a Q-Tip in the trash can.  We have the type of can that you step on the pedal and it opens.  FIVE times.  Such a simple thing.  Frustrated me at the time, but I didn't realize the WHOLE day would go like that.  My coordination is way off today.  Woke up 30 minutes before we had to leave for the bus.  Both small kids wanted to be carried downstairs.  I used to be able to handle this, ask anyone, my arms used to be full of kids...one on each hip.  Then, this.  So, I choose the squeakiest wheel and carried it down first, clutching the stair rail and stepping very precariously.  I then put that one down, which is now screaming because I let them go, and I go up for the next (you see how I gain strength and fit in exercise).  I get the second, who is still screaming because they were abandoned and I bring them down and place them next to the other screaming abandoned child.  They are both screaming now because they still both want to be carried.  At a point, as little as a month back, they would be my "happy travelers" and both climb aboard my wheelchair, but I refuse to use it now, no matter how tired I get.  So, meanwhile the oldest is shouting demands such as; make my lunch Im going to be late and "Where are my shoes" and such...  We make it out the door and into the van, half in our underwear, and make the bus.  One down.  When we arrive back to the house, the screaming begins again because one wants to stay in the van and watch TV and one wants to go in and neither want to be alone....Typical morning in our house, but I can handle it.  Al is on a 24, as usual lately.  So, its only me but Im SO doing it.  This morning, However, my brain is on my fundraiser.  In between one screaming and the other covering the house with baby powder, I am on the computer designing fliers and tickets and such. 
  I finally got approved for an ECAD Assistance Dog and I need to raise $8000.  They say it takes most people 6 months to a year to raise the money.  They don't know ME.  So, I have to blow the roof off this fundraising.  Miranda Vineyard offered their venue for minimal to help my cause.  So, I have a place.  The date is Nov 10th.  Now, Im multi-tasking trying to used the computer and tend to the kids....who are behaving like a pack of wild wolves.  I can only use the laptop to design and you really wouldn't think how much hand-eye coordination it takes to use a laptop or pc.  Its not easy.  I keep deleting and hitting the wrong button and.....Argggg.
  My mom had a friend over in the midst of this and I apologized ever so much for my house being a mess, but Im trying to organize a fundraiser.  Naturally she asks and I explain. She then tells me her mom works at the local radio station......what are the odds..... within a half hour I sent her all the info.
  In one day I have created the flyer, made tickets, contacted a band and began to advertise. See my web site www.mybeautifullifewithms.com or my facebook page (my beautiful life with ms)
 for details.  I still need a lot to come together....
   Back to my day...  I  pour maple syrup all over the counter instead of in my coffee cup because I misjudge it...  What the heck.  So, I take AJ out to play outside and blow off some steam by raking leaves...I got poked in the eye by branches FOUR TIMES because I didn't see them coming.... It went on.
  Through this fundraising process I am still amazed at the same old thing.  Some people will drop everything to help, to offer whatever they can.  Then, some, are so self concerned and absorbed and busy with nonsense that they cant even respond to an email....really?  Then I think, I used to be there.  I used to sit behind my desk at work and delete all the emails I couldn't do anything about immediately or that didn't directly concern me.  I was one of those people.  Never again..
  One last note...  ECAD has a live puppy cam.  You can watch the puppies just born.  You can also donate...be sure to put my name(Tina Torizzo) in the notes when you donate online or by check...  www.ecad1.org

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!

Nothing new!

    Ive been tip toeing for about 5 days now, as my symptoms have slowly gotten worse.  I ended yesterday with numbness in my whole lower jaw, tightness in my throat, weakness in my legs and a fever.  I was starting to regain my beloved lack of coordination as well.  I called the doctor, as you may have read, on Wednesday just to check in.  That's when the nurse ordered me in for an MRI.  Later that day I started to get pressure in my soft palette and I thought maybe it was sinus related.  So, I started taking my antibiotics again.  I waited until noon today without hearing anything from the doctor.  I couldn't wait a minute longer.  So, I paged the MS doctor on call.  Luckily she was the one that ordered the MRI.  So, she not only wasn't bothered by me calling on a Saturday but also admitted she should have followed up sooner.  Within 15 minutes, she read my MRI, compared it to my previous(6 or so) scans and called me back.  My MRI was 100% stable.  Whewwww.  No new lesions.  No white matter turning to mush in my brain.  No reason to panic.  So, it must be a cold, or infection elsewhere.  Music to my ears.  As you can imagine, all sorts of things were turning through my head.  On the forefront....another stay at Yale.  I  love that place and all, but I would prefer(and so would my kids) for me to be home.
   Today, and for the next few days, I am challenging myself.  My husband is away for four days.  I will take on the household and kids on my own. Since my diagnosis,  I have done this for a day at a time, but never this long of a stretch.  Its one of the very few times I am thankful I no longer live on a farm or have a demanding job (well, besides the kids....they are pretty demanding). I don't know that I made the right decision, for Im not feeling great, but Im going to do it!
   My husband and I are challenged daily with the kids lately.  I think they are all at a tough age.  The oldest(10) is testing our authority and trying to exert her independence.  Our son(3) either has the terrible twos a little late or middle child syndrome is kicking in.  Our youngest(18mos) is a peach.  Really, she is lovely.  She is no longer in the "baby stage" though and you cant just put her down somewhere and expect her to stay... to the contrary!  She is everywhere, all the time.  No one told us how tough three kids would be.  OK, maybe they did, but we were smarter, or more capable than them, so we thought.  With three, you are outnumbered, there isn't enough space in the car to separate them effectively,  you only have two arms, there are one too few legs on a chicken, etc...  You are met with challenges absolutely everywhere.  When you have three, you might as well have 4 or 5.  Luckily for this MS and my Tysabri, we cant have more, because we would.  We just love kids....I guess its a sick, twisted love because they make us utterly crazy!
  Take tonight, for instance.  I decide to reward myself for making it through a long, tiring day with the kids.  So, my parents and I pack up and head to a concert on the beach where we live.  Now, my son hasn't napped today so I know his behavior is going to be bad.  I expect it.  I counter approach it by having an extra glass of wine.  As predicted, half way through dinner, despite our endless efforts, he throws sand in the French fries.  Ha...I expected that.  No biggie tonight.  After a while of visiting and playing, he sneaks up behind me and dumps a cup of sand over my head.               I   did   not expect   that.                So, then, right on the spot, "called" the night.         Done.          Kids...
   While I was there, an old friend(of sorts) came up to me to say HI.  In conversation, he says "You aren't at the vineyard anymore....So, where are you now?"...   Really?  He doesn't know?  He can't tell?  I figure if he doesn't know about my MS by now, the months I wasn't around, if he cant tell, than why SHOULD he.  I reply "At home, with my three kids".  He says "Well, you look really happy".
Thanks, I am  :)

Here We Go Again

   There was a point in all of this nonsense, as bad as I felt during the day, I remember if I woke up in the morning and didn't move...if I just held still and didn't  move a muscle...I felt like a normal person.  I felt as if nothing were wrong.  That was before my other symptoms kicked in.  Now, I always feel something is wrong.  Even if I just wake up and don't open my eyes yet, I feel pins and needles in my face.  I feel a constant tremor  through my body.  The tremor is so  much that I have to either clench my teeth or separate them, or else they chatter.  Its like electricity is running through my body or something.  I often wonder if my kids can sense it.  If they can sense Im never really "at rest" and if it makes them nervous or worried.  There isn't a minute that goes by during the day that I feel "normal".  I have to concentrate on standing, walking, talking, swallowing.
   This morning I woke up and, in addition to my facial nonsense, my throat was tight, my neck hurt, my lower jaw was "buzzing".  It could be one of a few things:  It could be an infection somewhere in my body and Im working so hard at fighting that off that I cant fight off e every symptom of my MS and its acting up, It could be a "new" symptom (which it better not because Im on this high risk, most effective treatment for MS, brain eating drug) or it  could be the actual brain eating disease itself.  My husband suggested that rather than diagnose it myself to call my specialist.  So, I did.  I spoke to the nurse, which spoke to the doctor.  She told me that "in a normal case" they wouldn't worry, but since it was me.... and my MS is so active and just doesn't give me a break, they would like me to get an MRI as soon as possible.  So, here I go again, Tomorrow at 2pm.  Wish me luck...
   I don't like to leave these blogs all negative.  So, I have been progressing rapidly this week.  My balance has been great and I am no longer dizzy at all.  I can run a little and was even able to save my youngest from careening down the driveway and into the trees yesterday!  The kids were so proud of me :).  So, hopefully this is just a minor setback and I will be back on the road to recovery shortly.
  

Progression of Multiple Sclerosis

   Today is my four month Anniversary.  I got my first symptom of MS four months ago.  I know that doesn't seem long, but its been an eternity to me.  It just happens to be four months ago was my oldest daughter's birthday.  We had plans to go to the water park for her birthday.  I was home in bed.   Couldn't move.  I am making great progress.  I have cut down my Physical Therapy to once a week.  We add on exercises each week that challenge me more and more.  It takes patience and a lot of focus, but I pretty much meet the challenge.  This week we ended on balancing on one foot.  I did great, until the kids started bickering and fighting in the other room and I came crashing down. 
   I took my daughter to the pool the other day.  We were on our way out. I made my way from where we were sitting, across the pool area, to the gate.  I concentrated on the gate and walked towards it.  I focused on every step, solid and steady, trying not to waiver or stumble....trying to look normal. After all, the pool here is full of beautiful moms, with a ton of kids, that have it all together.  I sized up the gate before I got to it.  I lifted the button  with one hand and pushed it open with my foot, trying carefully to push just enough so that I could get through it but not so much so that it would slam back against itself and draw attention to me(I have difficulty with the amount of pressure I need to apply to things).  I made it through the gate and to the picnic table on the other side.  I sat down on the bench and grabbed my journal to scratch a few notes down.  There was a woman on the other side of the table.  She asked "Are you a writer?".  I told her that I wasn't, but I have a blog with a small following of people that said I should write.  She asked what the blog was about and I told her of how I was diagnosed with MS this year and the blog tells the story of my diagnosis and struggles through the process.  She looked down her nose at me and simply said "Oh, I'm Sorry".  Instantly, I thought not about her short reply or sudden lack of interest or halting of conversation.  I thought...I made it all the way across the pool area, through the gate and sat down and she didn't know I had anything wrong with me.  Yeah, maybe she didn't know how much work and focus it took and she clearly didn't see my writing, but that's progress. :)
  I have had two treatments of my possible brain eating infusions so far, and no "new" symptoms have occurred.  I just wish my "old" ones would go away faster.  I do my therapy and take my meds, prescribed and natural, do massage, see my doctors and whatever else I can think of meanwhile trying to be patient.  I am to the point where I am looking beyond how much better I get from here.  Looking beyond daily discomfort and set backs.  I am now looking long term, to the progression of the disease over time.  Frankly, It sucks.  In the back of my head I do hope for some miracle cure that will not only stop new symptoms but will reverse old ones and let me live a long normal life, but that is the dreamer in me.  I, unfortunately, know my fate is wheelchairs and walkers and more difficulty swallowing and walking and probably even thinking.  A friend of mine, a tattoo artist, just finished tattooing a woman's eyebrows because she has MS and just cannot maintain them anymore.  Luckily, I don't "maintain" my eyebrows, probably because I don't care that much, but....you get it.  Everyone has their story of someone they had to care for in the end with MS and how difficult it was.
    I try and spend as much time as I can with my children and hope to be able to do more and take them more places.  I want to enable them to have a normal childhood and not hold them back.  I need them for their constant love (well, besides for when they hate me) and to be able for me to feel young and capable when they are around. 
     When it comes to my husband, I think differently.  This will anger some of you, but this is how I feel.  This is MY blog.  Maybe my beliefs are because I have been through divorce, but I do not believe marriage is a covenant through God.  Don't get me wrong, I believe in God, I live my life accordingly, and I believe he plays a great part in our lives.  But marriage, I believe is a choice.  I don't think my husband has made a good choice.  He got shorted, ripped off, robbed.  He works hard and had plans for the future and should be able to live those out.  I try to convince him to.  I know it sounds weird.  You would think someone in my position would be begging for his love and support and promise that he will be there for me now and in my most difficult years.  Part of me, though, just wants to set him free.  Part so he doesn't have to be held back and part on my end so he doesn't have to watch be become what I know is my fate.  So far, despite my convincing, he is still here.
   I am still in the early stages, I guess, of rebuilding my sense of self.  I take great pride in my life.  The fact that I can care for my kids, provide them with healthy food, keep the house clean and nurture them is fulfilling to me.  I have my routine of less therapy and more enjoyment during my weeks.  I can enjoy my gardening, swimming occasionally, cooking good meals(on my good nights) and a nice glass of wine here and there.  Then, end on the nights snuggling my kids to bed.  From the outside, it looks like the perfect life.  My beautiful life.

Learning Grace

   I am a Traditionalist, Old Fashioned.  I have been referred to as having 'Old Blood'(Ironic now, I know).  So, you wont ever come across anything ultra-personal in my blog, just to set you at ease.  The leg shaving story was about as personal as I get.  With that being said, I view the bedroom as a "sacred space".  Its where you let your guard down, (where, as my husband says "I solve all the worlds problems", where your heart can be open and your mind can be free.
  On April 14th I spent a night cuddling in bed with my children.  All of them held close, not feeling that "let your guard down" feeling, but with the feeling of something bad to come.  Someone once told me (that had bad news to tell me) that when I had a bad feeling, I was strangely and usually right.  Yuk!  So, I held my kids tight.  The next day I had my first major attack of MS and it sent me to the hospital.  It severed my life, temporarily, with my children.  I was their main caregiver.  I put them all to sleep at night, took care of them when their dad worked days in a row, etc... I had never been away from the youngest ones.  Now, I packed us all up to go on vacation, somewhere unfamiliar, and left them.  Suddenly and unexpectedly.  The youngest was still nursing and was used to me cuddling her to sleep every night.  My son just came through a rough patch of separation anxiety with his dad and had attached himself back to me.  My oldest, due to divorce and custody issues, has a difficult time in the close environment with both my husband and mother in law.  The one thing you assure your kids is that you will be there for them.  Ive learned, the hard way, this isn't the best idea.  I didn't return back from the hospital(and still have completely not returned) for over a week.  We packed up and went home.  I, as my blog explained, was home but couldn't take care of them, couldn't change diapers, couldn't feed them, couldn't bathe them or put them to sleep.  I was like a stranger in their house, but I assured them I was here to stay now and would get stronger every day.  Back to the hospital I went, this time for even longer and farther away.  So, visits weren't nearly as frequent.  Mid June, I guess it was, I returned home.  I was even more of a stranger.  The little ones wanted nothing to do with me.  They didn't want to sit with me, let me change them, pick them up, feed them, etc...  When I had to put them to bed they would just cry for their dad.  Well, I have been trying hard to get them back, to love them without being concerned about getting love back.  I thought that was going to be a huge challenge, but when it comes to your kids, its easy.  After accomplishing this, I realize that's the way you should relate to everyone in your life, to treat them with expecting nothing in return...  Ive come to the realization that its not a challenge at all, its grace.   It was only a few nights ago that I had to put all the kids to bed by myself.  After they wound down and finally fell asleep, it was just me, laying there, in our "sacred space" with our guards let down, our hearts open.  There was no one happier in the world at that moment than me.  I could not ask God for one more thing, I had everything that mattered.  If it weren't for my illness, I wouldn't look at this situation the same.  In that way, and others, I am thankful for this illness.  A few nights later, they all snuggled me and drifted off without once asking for their dad.  I was all they needed.  I gave them my love, unconditionally with no expectations, and I got it back.  Life is funny like that, teaching us lessons in its own time.
  I also got the privilege of sleeping in the same bed alone with my husband the other night.  We are transitioning the kids each into their own beds.  As much as he disagrees with the idea of a "family bed" that is what we have had for the last three years or so.  On my part, because I think its natural.  On Al's part because he falls asleep  before the kids and is too tired to put them in their beds.  Nonetheless, one of the things I actually miss about Yale is Al slept by my side every night.  This time, though, we were in the same bed, our guard let down, hearts open.  I lay awake for hours just thinking of how much it meant.  I look back in the past and think of others and myself being in the position of a loved one using the words "they slept in the same bed, but nothing happened, or it meant nothing".  What a wrongly absurd statement, or maybe a statement from someone with less morals, less tradition.  I feel bad for them, actually, looking back.  They are missing so much of what human relationships are really about and the precious moments they hold sacred.
   My illness had lead me to live in the present, to listen and take to heart all the words people share with me, to not promise anything in the future.  No matter how much you think something will or will not happen, the only sure things are the here and now.  In part, it is heartbreaking to me that I cannot promise to my children that I will be here for them, that I'm not going anywhere.. or anything else in the future for that matter.  It does, however, make this disease easier to handle.  I don't get caught up in thinking what the future holds for me, that every day I have to deal with difficulty talking and swallowing, that every meal I cannot enjoy to its full extent because my tongue is half pins and needles.  I think...  This is what I have to deal with now.   Tomorrow, maybe not.   "In his heart a man plans his course, but the Lord determines his steps".