Friday, October 25, 2013

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

Wednesday, October 9, 2013

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