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!