Realism vs. Negativity

       I was having a discussion with a friend recently and we were talking about the future.  I told him one of my future dreams... and then added something about being dead before I got the chance (I was actually thinking worse; like wheelchair bound or blind and still wanting to live that dream but not being physically able).  It was then that he asked why I was so negative.  It was also then that I was reminded how you have really NO IDEA what it is like to be in someone else's shoes unless you have had a similar experience.  No matter how hard you try.  In my mind, I am optimistic and positive and a dreamer of all things good(after all, my blog IS titled My Beautiful Life, with m.s.).  .However, I am also a stark realist.  I reminded this said friend that I have a progressive illness with no present cure. I have a lesion on my Brainstem that could potentially paralyze me.  I have no vision in one eye due to a lesion on my optic nerve.  I could go on, but you all know my story (If not, feel free to read my other blog posts).  There is nothing except the faith in my current medication to prevent the same type of lesion on the other eye... or somewhere else.  I consider this in ALL I do.  Every . Single.  Day.
      I have been doing well.. super well.  A friend of mine with MS as well saw me this summer and told me how great I looked.  I passed the same compliment back for this is someone strong and wise and accomplished that also does not look, on the outside, like he has MS.  We shared our mutual "key to life with MS", which is ....  tuck it away....  back (way back) into your brain and carry on with life.  Now....  compartmentalization is something I have often criticized people for in the past.  If I was to use my own advice then that you cant put yourself in someone else's shoes... but it is too late for that.  So, I have stuffed it away.  It isn't that I don't have MS.  It just DOES NOT affect me.  I go out without Crane (my Service Dog).  I am NOT tired.  My body DOES NOT hurt.  I do everything a normal person would do...or at least some normal people.  I keep up with the kids.  I took an EMT class (and kicked it's ass I must say).  My infusions are a chance to study and catch up.  That is it!
    ......That being said (you grammar freaks just have to bite your tongue, OK?  After all, this is - again - MY blog)...MS is something I have to consider with every decision.  I weigh out what activities are reasonable for me in a day.  It makes me decide what events I attend, when and how far I have to drive and the importance of each event as well.  I know it seems selfish but if there is an event someone wants me to go to that either I don't want to or I know will make me feel uncomfortable, there is a good chance I will skip it.  My time here, as a fully functional person, is limited.  I know this.  I have a progressive illness for which there is no cure (in case I haven't already mentioned).  So, I weigh my pros and cons.  Will I regret not going?  How uncomfortable will it make me?  Is it something relating to the kids?  Is it a once in a lifetime occurrence?  Is there something I would rather be doing?  Now, I know that last one seems selfish but if you are considering your future and making the absolute most time out of what you have.... that is something you should consider. So, after I analyze something, taking into account my MS, I stuff it back away.
This technique(?) allows me to continue to be positive and optimistic and take on challenges,,just with a hint of reality.
    One of the downfalls of all the "stuffing back" of my MS is avoiding my blog.  I kind of lost sight of what the blog was meant for, to help people.  I write it to inform and inspire those living with MS or other illnesses.  I write it to keep family and friends up to date so they don't have to ask how I'm doing for no one really knows the right questions to ask or the right way to word those questions.  It saves them for awkwardly tip-toeing around conversation.  By the way, questions don't bother me at all, it is the person asking that seems more awkward.  So, Its has been a long time since the last post and I apologize for that!
   I was able to help ECAD in the making of a video promotion this past summer:
Check it out here!! 
Although I had to dredge up some memories of how bad things were for me, I was also able to realize how far I have come.
I believe in the last blog I wrote I was battling with the decision to follow my Neurologist(Dr Mary Bailey) to her new practice (Mandell MS Center of CT).  Well, I did end up, very hesitantly, leaving Yale and following her to Hartford.  My first visit was quite a shock.  The whole building feels like a convalescent home.  The main function is rehabilitation.  So, there is a pool and fitness center and a daily living center (that the kids LOVE to play in).  Each of these centers are made for patients with advanced MS.  Talk about stark reality? There's no escape from thinking about my own future and seeing myself in their places. Anyway, The building and exam rooms are slightly out of date (esp compared to Yale).  All the staff was, obviously, new to me...not like all the staff at Yale that I have made such strong bonds with.  So, I sat there waiting,  in a 80's feeling exam room, just wanting to get out of there.  I knew this was not going to work out.  Dr Bailey finally came in and I wanted to tell her how I was sorry but I don't feel comfortable here.  Out of politeness, I first asked her how she was doing. She went on and on about how happy she is now.  How she was blinded for years with all the money Yale has and the "appearance of it all".  Here, though, at Mandell Center, they aren't all about research..  Mandell Center is all about their patients and how they can help them(there goes me and my supposed non-judgmental outlook on life.  Guess I still have some work to do). So, if Dr Bailey ( The leading Neurologist from Yale) can handle it, so can I.  It has definitely been an adjustment but is more like "home" every time I go.
   One of my routine blood screens showed I had anemia. So I have been seeing a hematologist and getting IV Iron infusions weekly along with my Tysabri infusions every 28 days,  Anemia causes fatigue, twitchy legs, headaches...  Basically the same of some of my MS symptoms.  Between MS fatigue and Anemia fatigue I'm surprised I made it through the holidays.
  In the spirit of challenge and keeping my brain alive, I just finished an EMT class.  I made it to every single class for all four months.  I went to off site training.  I did everything everyone else did and did not have to tell a single person I had MS.  I got an A in the class and am awaiting the results of my final state exam.  I was able to meet people and make friends and socialize without being a person with a disability. Now, that's SOMETHING!!
I ordered my textbook for class and when I received it I sat down to scroll through it.  The text was blurry.  OH NO. This revelation wouldn't be so alarming if i had sight in both my eyes.  However, when you only have one.... it is a bit worrisome.  I remember the day I lost the vision in my right eye like it was yesterday.  It was during my stay at Yale and getting IV steroids and plasmapheresis , surrounded by the best Neurologists and Opthalmologists in probably the country.  Yet, over the course of mere hours I completely lost the right side of my world and there was nothing they could do to stop or reverse it.  So, I rushed in to see my Neuro-Opthalmologist.  After hours of testing she gave me her final conclusion....  I'm old.  That is all.  She told me to go to the pharmacy and pick up a pair of lowest strength cheap reading glasses. Now, I am one of those people that searches the house for their glasses when they are right there on my head the whole time.  uggggg
I have much more to tell all of you.  However, I will make that another blog and I promise it will be soon.
Happy Holidays!!!