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!!!

The Power of Positive Thinking

I have not published a blog post since MARCH!!!!
Where once I would NEED to write posts just to stop thoughts and memories and terrors from swirling around in my mind.  Now, I dread it.
Where once I had Physical Therapists, Occupational Therapists, Speech Therapists, Visiting Nurses, etc...  to help me improve...I have no more.
 It has been over 3 years since my diagnosis of MS.  What residual symptoms I have now, I will have forever (plus more in the future).  I am not being pessimistic...its just the nature of the beast.

Where I once wanted to share my stories and my symptoms and my experiences...I now want to block them out. OK, Instead of "blocking things out" i will used instead "the power of positive thinking".  "A positive person anticipates happiness, health and success, and believes he or she can overcome any obstacle and difficulty", Remez Sasson. I spoke to a friend the other day, that has MS as well, he (after 35 years)fully believes the same..  It seems like all the research and breaking treatments out there for MS are to prevent the disease.  They aren't to reverse symptoms.  Sometimes I feel like an old saggy woman in a convalescent home.  No one is focusing on making her life better, its just tending to her until her time comes.  Yeah, there's some rumors swirling around out there of stem cell treatments and new drugs and such but it is years and years away.  Too many years to reverse symptoms that are years and years old.

Positive thought seems to be the way to go. When you think positively, you can actually block things out and forget about them (or try to convince yourself to at least).  I mean, I cant completely but I can try.  For instance, when I take my evening walk, since I am blind in my right eye, every time I turn a corner to the right....  well....I have to turn my head like an owl to check for oncoming traffic before I make my turn across the road.  I try, however, to quickly tuck this away and not dwell on it.  There are about 1000 more examples a day similar to this.

So, for now, I dont feel tired.  I dont have pain. My vision is not a setback.  All these other annoying symptoms are not so bad.

I must say, I have been great lately.  It is difficult to say whether its because of posiitve thought or my lesions are just completely dormant at the moment.  I remain on medication, as I will for life.  My 28 day Tysabri infusions are the strongest and most effective available.  It is the best option for preventing future attacks of MS.  So, I let the medicine worry about the future.  For now, I'm good.  I have been leaving my Service Dog at home(which doesnt thrill my husband). However, its difficult to tote around a Service Dog everywhere and not let it remind you why you have it.  I did go through training and got Crane and I certified as a Therapy Team.  So, we can go out and spread some cheer through hospitals and such.

 I have been walking/jogging.  I joined the local Fire Department.  I am starting an EMT class next week,  I will eventually die from some ms related symptoms...that's a fact (unless something more rapid sneaks up on me).  But for now, I'm going to be a normal person.  I AM!!!

What else.....  My neurologist left Yale.  This fact shook me for a few months.  She is like a life line for me. I remember seeing her for the first time and having to be pushed into the exam room in a wheelchair.  Not only could I not walk at that point, I couldnt sit up either, without feeling completely sick.  Now, look at me today.  Could another doctor have had the same results?  Sure. However, I see her as the one who was able to turn me around.  I hate the thought of leaving Yale.  I love it there.  They are the best in the field....but then again... So is DR Bailey and she left.  She now practices at The Mandell Center for MS at Mt Sinai.  I have been to see her there and I am not sure how I like it.  I suppose time will tell.

So, back to my blog...  When I write, I write about my MS symptoms and how they affect me and others around me.  Well, the symptoms that remain, I just dont want to talk about.  I dont want them to affect me and I surely dont want them to affect those around me. Sure, I have things that affect me on a daily basis, but for now, those are mine.

8. Rollercoaster

My week started off pretty well and, financial concerns aside, I felt like this was finally something I could live with.  I had numbness in my tongue, throat, torso front and back, arms and hands.  My ability to control my hands without looking at them was not very good, neither was my handwriting.   However, I could  walk, take care of myself and even help take  care of  the kids here and there.  I really felt good and wasnt in discomfort or pain.
By Tuesday, the numbness in my tongue and throat increased and I was very anxious to get into see the MS specialist at Griffin Hospital.  I walked the whole length of the hospital just fine (I was pretty proud of myself.  It's the farthest I had walked in a month). I was very hesitant to actually get to the waiting room though.  I was not sure what I would see.
I used to work as a CNA and one of my patients had MS.  I remember him having such bad muscle convulsions that he would have to wait until they subsided before he could regain normal speech.  His family eventually ended up deciding to place him in assisted living because we could not meet his needs at home.  I remember they asked me if I would accompany them to his new home.  That was the last time I saw him.
Anyway, so was I goimg to find a waiting room full of sullen, convulsing patients in their wheelchairs?  I didnt look around much but did notice there was a range of people,  from younger to older, with and without assistive devices.  While we waited,  we read through a newsletter written just for, and by, kids who's parents have MS. Maybe Ivory could write HER story?  We werent  waiting long before we were called in.  The doctor got a thorough medical history.   He showed us my MRI scans.  Surprisingly, the MS lesions werent lit up like a huge ball of fire like I had expected, but more of a faint shadow.  The doctor noted a few on my brain, the one on T3 and, most notably, the one on the top of my spinal cord.  We could see from the scan that in wasnt just sitting on my cord, it was within it.  He did a neurological exam. As part of it, had me walk a straight line heal to toe.  Oh boy, if I ever drive again Im going to need a card that says... just go straight for the breathalyzer.
The doctor asked if I intended to have more children.  I was so shocked I didn't know how to answer. I silently ruled out that possibility weeks ago.  He recommended a second round of iv steroids to try and get me back to normal sooner, wanted to run some additional blood tests to rule out other conditions, gave me some more meds to add to the ones I already have (I HATE taking pills).  He then gave me literature on all the current MS drugs and sent me on my way.
Later that night, I sat down with all the literature.   Each drug came with it's own box of info, cd, tabbed file folder and gadget to make you want to choose their pill, injection,  infusion or such.  I opened each one and went straight to "side effects".  I then took a marker and, in my best penmanship, wrote the number one side effect on the front cover.  Let's see... I have to choose between: vision loss, liver failure, rare brain infection, depression/suicide.  Or, from the thinnest packet, with no cd or gimmick, low white blood cell count.. but that one has only been on the market a few weeks. ?.. I think I will look this over some other time.
Wednesday brought the start of my second round of steroids.   When the doctor calls in the order, the meds get shipped to Walgreens and a nurse gets "dispatched" to your house to deliver them.  So, the nurse shows up with my "kit".  She pops up my new IV stand, hangs the meds, after blowing up a vein or two finally manages to set my catheter, has me sign some paperwork and hands me my "do it yourself" guide to administering  my meds.  Seriously?  Now I've done this a million times on animals, but never on myself.  I ask "so, you will be back tomorrow"?  She says "no".  "so, then you will be back in 5 days to pull the catheter"?  She says I do that on my own too.  OK....
I get up early Thursday morning so that I can run my IV before my big day at Yale. I've been awaiting this for a month. I feel terrible, the room is spinning, I'm throwing up, I do not want to go. My husband convinces me otherwise and we are in the car. I don't care much about the waiting room today as I'm the one in the wheelchair hunched over and unable to stand. The clinic is beautiful, its like they just cut the ribbon before we arrived.  The nurses are wonderful and we were taken in quickly.  We are lead into the doctor and all I can do at this point is creek one eye open. I apologize for my lack of sociability. Im feeling awful. Again she takes a long medical history and reviews the scans.  Her bedside manner it's much different than the previous doctor at Griffin we saw. She explains the illness and process that we are going through. She is there to help us.  She gives a longer response time, 6 months, until Im back to where I was, but she seems confident I will get back there.  She reviews with us many treatments for MS, all covered in those scary folders.  Her drug of choice is the one that causes a rare brain infection but it only happens, she explains, when exposed to the JC virus which is a strain of the common cold. Does she not remember we have 3 kids? We are the common cold. She asked me, however, if I plan on having more children. I don't know if you remember this is something I've heard before. Is it possible? I am blessed to have our three children,but we are now a family of 5. If anything happened to my children what I want another? Not that I could ever replace them but we are a family of 5. Its something I don't want to think about, but all moms do.  I know that.  Her reason for asking is that she recommends the most aggressive treatment....and it is not compatible with having more children.  Great, another choice.  I don't even know, in my heart, that my body would be healthy enough to be pregnant again.  She goes on to tell me that my odds of getting MS were 1:1000. My children's odds are 1:199.  That kind of makes my decision for me.  I ask about natural treatment.  She does support it and admits that high doses of Vitamin D work just as well at preventing further attacks as some of the medications out there.  She tells me, in her opinion, that I do not have the luxury of choosing a natural approach.  Due to the size, involvement and location of my biggest lesion, it could be disabling.  My lesion, as I mentioned, is at the base (top) of my spinal cord and therefore has effect on everything below it.  I do not have the courage to ask, nor hear, how disabling but Ive done research on paralysis caused by MS and I prefer to leave this one unanswered.  She recommends I stop the IV steroids, that they will only increase the speed of recovery, but not restrict it.  If steroids are causing this dizziness than we should stop. She comforts me with one last remark: unless I cant swallow, anything else is just  a new MS symptom and is not an emergency. I had some blood drawn and will meet up again with her in a month to start treatment.
I have just gotten more and more dizzy since then and haven't even been able to lift my head in 4 days :(
That was my week! Rollercoaster