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.

Taking on life

A cold, rainy day sets the tone for my 28 day infusions today.  I would normally take this as some type of omen, a storm, gloomy, damp.  Today, however, its just weather.  It's a good excuse to curl up in a heated chair, warm blanket and with my "friends" here at Yale.  These infusions, besides serving to prevent future MS lesions are a mental reminder for me that I am not invincible.  Lately, this is one of very few reminders.  If it weren't for blindness in my right eye and the nerve damage to the right side of my face it might be easy for me to occasionally forget I have this incurable restraint on my life.

Seriously though, I am stable and strong and energetic.  I am optimistic and active.  I work out every day and can even jog on the treadmill (I'm only up to 1 minute increments but it's something).  I play with the kids in the yard.  I carry the full laundry baskets up and down the stairs.  I even just "renovated" our sunroom by hanging and trimming in beadboard.



 I can thread the needle on the sewing machine, wear small heels and have even thought about getting a bike so I can ride with the kids.  It really is truly amazing.  I have felt so good that I have decided to leave Crane, my service dog, at home sometimes.  Though I'm not completely sure if it is to avoid the grief of being illegally questioned and prevented from going places that she is allowed to go or if it is because I just want to look normal.  There's something to be said about just blending into the crowd, knowing people aren't looking at me and wondering why I have a service dog.  Crane is not as pleased as I am with this freedom.  She got so upset at being left home few weeks ago that she chewed the hair off her front legs.  That gave me an idea, a revelation.  One of the highlights of Amelia's hospital stay was a large white "golden doodle" that came around to visit the kids.  Crane and I both LOVE kids... Though I'm sure I don't have to tell you all that ;-).  So, I researched therapy dogs.  I took the online course and now we are scheduled for an evaluation to become a "therapy team".  This will allow us to go to the Children's Hospital and cheer up some kids. During my training course, I had another moment of clarity.  One chapter of material covered the differences between Animal Assisted Therapy and Animal Assisted Activities.  They went on to teach how Animal Assisted Activities can help people to regain skills of walking, balance, range of motion......and I thought... how selfish of me to think I suddenly, spontaneously feel stronger and more stable.  It was probably Crane's doing.  Her walking beside me for 2 years, balancing me when I need it.  It was her that began to give me the confidence and reassurance while my vision adjusted.  She was the one to train my eyes to see what was safe ground and where to step.

 After all that she has done, I return the favor by leaving her at home?  I felt awful.  So, getting registered as a Therapy Team is kind of a thank you for her. Besides, no matter how good I feel, there are always times that it is much easier for her to watch the kids.

Speaking of kids, mine are doing wonderfully.  Amelia is completely recovered from her surgery experience.  I am almost there myself.  We are both taking on life to its fullest and plan to conquer much much more :-)

Finding fine

A friend of mine came up to me after church today and asked if I was still writing my blog.  She told me how much it has helped her understand what her sister was going through.  Her sister was diagnosed with MS a few years ago and lived in California. That was the straw that broke the camel's back for me.  I have been thinking again and again lately how I should write another blog post soon, but I just couldn't bring myself to do it.  The whole process actually takes a lot. First of all,  it takes time.   Time that I can sit quietly at my computer and concentrate.  I have VERY little of that. In my 2 1/2 hours of being child free each school day I am just scrambling to get the necessities done.  When the kids are here, having any time I can actually use my computer (never mind undisturbed) is extremely rare.  Secondly, writing a blog post takes a lot of thought.  It isn't that I am incapable of thought...  I sometimes just don't like it.  In order to write from my heart I have to face reality and really really think about how I am feeling and what I am going through.  Lately, well, I haven't wanted to face it never mind REALLY think about it.

I so much wish I could infuse myself back into what life was like in my first blog: http://mybeautifullifewithms.blogspot.com/2013/05/1-dont-judge-book-by-its-cover.html .  Or even one of those other times in this process that I was oh so motivated or positive.... but I can't.

Maybe the stress of my daughter's surgery finally got to me.  Maybe I had another relapse or got another lesion or something.  I don't know.  However, before Christmas was a very bad time.  Every day I was on the brink of  picking up the phone and calling my neurologist or just heading to Yale.  However, there was NO WAY I was going to be in the hospital for Christmas.  My husband tried to convince me that if I went they would just figure it out and send me home.  I have no idea where he has been for the past few years.  Maybe he blocked it out.  "BULLSHIT THEY WILL SEND ME HOME".  So, I just didn't go.  I had muscle aches so bad that I had to plan my days according to the levels of the house I had to be on because it was so painful and tiring to go up the stairs that I couldn't do it more than once a day.  I did what had to be dome in the house and with the kids but nothing more and I didn't leave the house for over a week.  I made it through Christmas and New Years but couldn't handle it much longer than that.  So, I broke down and made my round of doctor calls followed by lab tests.  Fairly quickly they determined I had Lyme Disease.....again. I've had it approximately 8  times in my life (comes with the territory when you have horses I guess), The doctor put me on a month of antibiotics and I guess I began to feel better.  I am still not sure if it was the antibiotics or just time that helped.  As with every up there comes a down.  Come to find out, I was unable to get my 4-week infusion while on antibiotics so  I had to delay the procedure.  When I spoke to my neurologist she informed me that SOME doctors actually extend the Tysabri treatments to every 6 weeks after a patient has been on it for a few years.  She then added.....  but I wouldn't do that with YOU.   UGHHH....  

I keep flashing back to the onset of all this. How quickly it hit.  How devastating it was.  How much I lost along the path to final diagnosis.  I flash back to being in an unfamiliar hospital, in a different state, without my kids for the first time.  Alone.  I got the official diagnosis and called Al to come to the hospital and it was just forever and ever that I lay there alone thinking about how permanent this was (is). I have become accustomed to planning for the future, for the things I won't be able to do.  These thoughts have become routine and normal.  The past month or two, though, it hasn't been easy.  It has been more REAL than it has been previously and I DONT LIKE IT.  I have been stumbling through life lately....literally.  I even have been leaving Crane behind on some trips out because I seem to get so much friction from some people about her.  So, instead, I deal with things like pain down my spine or in my knees for days after I misstep because she isn't there to guide me.  It seems that nobody is there to support her presence with me anymore.  Maybe it is because I appear fine to some people, even my family.  Maybe it is because of this rash of news and occurrences of false service dogs.  I don't know but I DON'T LIKE THAT EITHER.

So, I finish my antibiotics for Lyme next week and have my 4 week Tysabri infusion and 6 month Neurologist appointment scheduled for the next day.  I foresee my doctor putting me through the gamut of tests and questions.  I see her staring at me and asking how I am doing.  I want to, and probably will, tell her (as I do everyone else) that I am fine.  I don't want to tell her that I don't sleep due to muscle spasms, that the meds for muscle cramps and pain don't do shit, that I am tired from the second I wake up in the morning.  I don't want to tell her that I don't want to go out because I am always exhausted and uncomfortable, that the cold hurts, that I am worried the muscles on the right side of my face are wasting because I don't use them because I can't chew on that side, that I get such bad aches in my muscles and joints that I almost can't tolerate it. I don't expect great or even normal.  I will never have that.  I just want to tell her that I am fine.

After all, I will be..... eventually...even if not forever......

I just....have to...get to....fine ...again...