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.

CT Children's MS7 night nurse, you will not be forgotten!

      This blog is titled "My Beautiful Life...with ms".  So, maybe it should strictly pertain to MS?  Then again, it  is my blog.  So....
       As some of you know, my 3 1/2 year old daughter had heart surgery on Monday.  It was a routine & planned surgery to repair a common defect.  She was diagnosed with this Sinus Venous defect in her Superior Vena Cava and Atrial Septal defect in utero.  So, we have known about it since then.  The cardiac surgeons were just waiting until she was big enough to repair it.  We have had almost 4 years to get acquainted with the idea of this surgical repair.  Monday was her surgery day at CT Childrens Medical Center.  I can most surely say, with 110% positivity, that we were NOT expecting that.  WOW.  We got used to hearing friends with the same repetitive statements "I can imagine" or "Everything will be OK" or "It must be stressful".   Unless you have had a child having open heart surgery or brain surgery or in a major life threatening accident I can assure you, you have NO idea. Not that other issues aren't important and scary, but this took stress as we knew it to a completely different level.
      When you become a parent you take on this whole other burden of fear and protection over your child.  Your stomach almost drops out when they trip, fall, are away from you, break something, etc...   Now, you parents, think of sitting in a waiting room for 5 hours knowing your child is a few doors down in a huge operating room filled with about 20 people, many many machines, bags of emergency blood,  and your child...lying there... with their chest open and heart stopped and emptied of blood while the surgeon works to repair a hole in the tiny space of a vein leading to the heart.  I knew for 4 of those hours that I would never have my daughter back and if I did that one of those many "very rare complications" would leave her unable to breathe on her own or walk or without the ability for her body to control its own heartbeat. Her surgery ended and she was still(miraculously, in my mind) alive.  We rushed into the PICU room just as she was waking up.

 We were NOT expecting that either...what she looked like.  She was still on the pacemaker because her heart was still "disoriented".  She had catheters everywhere, in 3 limbs and her neck, some venous and some arterial as well as a central line.  She had the pacemaker and heart monitor probes taped all over, a urinary catheter.  She had a (way bigger incision that we were prepared for) down her chest and a chest tube coming out of her abdomen under the incision to drain fluid from her heart.  My god!!  I must say, CCMC and doctors (Dr Salazar & Dr  Bernstein), surgeons(Dr Kirshbom), nurses(Jill Sullivan((you should have a page of your own right up there with the Docs)) & too many more to name) and staff were amazing.  There are so many little details of the amazing things they did, like let Amelia drive a little Barbie Escalade down the hall before surgery.  Child Life  provided some amazing services that really cheered up Amelia and helped speed her recovery ( a Harp player came to her room, a Craft Cart came by each day and left crafts and stickers and such.  They even sent a Golden Doodle around to visit the kids).  We did have a cheer up squad of our own as well (Our friend Jim and the Hartford Fire Department came by with a truck and gifts, she got flowers from her Aunt and Grammie, etc...) She actually rebounded quite fast and each day preceding the surgery some other line or drain was pulled and soon she was allowed to leave the PICU and transfer to MS7, a "regular care" floor.

 Along with leaving all our fantastic PICU Docs and nurses behind....we also left the fantastic care behind.  I will keep this part short (there are SO many details I would just love to include but won't).  I will just say, to the MS7 Night Nurse on duty November 12, you will unfortunately not be forgotten.  As we recall memories from this ordeal and stay at CCMC the fact is that the care from this nurse and lackadaisical atmosphere from the entire MS7 floor, in general, will overshadow those amazing people at CCMC.  Sadly, the positive of this story is it prompted us to want to bring Amelia home.  I just couldn't handle one more night of holding her down for procedures, blood draws, x-rays, meds, etc...  So, hesitantly, we headed home....less than 2 full days after double bypass surgery.
    We have been home for less than 24 hours.  Amelia is doing amazingly wonderful..and so are we.  There's nothing like home to make you feel better.   I did not want to be discluded from being in any room anywhere with Amelia.  So, I left Crane at home for this hospital trip.  I had to navigate busy hospital corridors, cafeterias, elevators, procedure rooms and more without the help of my Service Dog.  I have had a few incidents lately that have unfortunately left me not very confident in the public to react appropriately in regards to her (here is a good article:http://www.anythingpawsable.com/things-service-dogs-public/#.Vkdwn3arTIU).  So, along with not having her,  the fact I got about 10 hrs sleep(split up over 3 1/2 days) and was under an amazing amount of stress....I was really appreciative to be home in my comfortable, predictable environment.  All of those factors: unfamiliar environment, stress and lack of sleep are not at all ideal for people with MS.  I am very surprised my body didn't just shut down.  Then again, it knew something was going on in my life that just was more important than it at that time.
    So here we are, at home. Surgery was done 4 days ago.  Amelia is on nothing more than diuretic and motrin. We do have 6 to 8 weeks of follow-up tests, doctors appointments, keeping her healthy and rested.  However, She is ready (and trying) to take on the world and we are almost ready as well!

Learning to live with a disability

This is what my doctor says, "Don't expect anything for six months".  WHAT?  SIX MONTHS?  Yet, she can say I most likely won't regain vision in my right eye. And when I call on the phone to ask the nurse a question and she asks if I am still having dizziness and balance issues, she replies "Oh, Im so sorry" when I respond "yes".  So, where is six months there? I am beginning to realize, 3 months from my first onset, that this is as good as its going to get.  Yes, I can walk around, I can take care of myself, make dinner, take partial care of my children, etc... and I appear normal.  Everyone says I look great.  Inside, I am not.  I am weak, uncoordinated(you should see me at night ricocheting off the walls trying to get to the bathroom), fatigue easy, I cannot see out of my right eye, the entire right side of my face is numb including my tongue.  When I  raise my voice or talk passionately or at length about something my tongue just about gets paralyzed  and I have to speak slow and be sure to pronounciate  clearly.  I am realizing,  I have a  disability.  I have my handicapped pass for my car.  Ive filled out my disability forms.  I think that's the hardest part, coming to grips that you will never be 100%.  There are things I will not be able to do.  Things I have to cross off my bucket list.
   Another challenging part is to remain positive, yet realistic.  The positivity is for every one else.  God forbid they see you in despair or hear words like 'never' or 'cant'.  They would have such pity on you, they would be heartbroken, they wouldn't be able to sleep at night.  So, you smile and nod and say all the happy words.  I do admit I have an advantage.  As my blog is named, I have a beautiful life.  I live in a wonderful house, neighborhood, community.  I have a wonderful church and friends and family.  I have incredible parents, a loving husband and 3 amazing children.  I don't owe anything to anyone (except medical bills and a few payments on my old mini van in the driveway).  Like Ive said before, other than future financial concerns, my life is so full, so blessed, so beautiful that I am OK with this part being taken.  I definitely know a lot of people, handi-capped and not, that are not so fortunate.  The realistic part is for me, to prevent me from being overly positive.
    The next obstacle to realization of disability is what assistive aids you need. Luckily, at the present time, I only need a wheelchair here and there.  I use it around the house mostly, when I'm tired or when I want to conserve my energy.  I paddle around in it back and forth, usually with a small happy traveler on my lap!  It comes in handy when I have to lean down to pick something up off the floor, because my balance isn't so good doing that while standing.  So, at home I am comfortable with it.  Going out is another story.  We tote it around in the car and I feel like we are flying  with one of those aerial banners that says "DISABLED". 
   When I have to use it, I'm happiest with a child on my lap.  It makes me feel useful.  I'm learning that even handicapped accessible places aren't so easily accessible.  The cracks in the pavement or spaces between pavement and walkways suck in my front wheels and leave me stuck until my "pusher" pulls me out and turns me around backwards so the back wheels go first.  Then they continue to push me, like an infant, to my destination. I haven't even mentioned the looks.  Most people with wheel chairs, or assistive devices LOOK disabled, but as I said, I look fine.  So, people take extra long to look.  Do they think I am lazy?  That I want to be pushed around?
  Ive got to give the other handicapped people out there a whole ton of credit.  It takes a lot.  My comfort place is home.  I love it here.  I am at ease.  Friends ask all the time if I want to get out, go to the movies, to church, to their party????  So I can make a fool of myself by stumbling over uneven ground? Maneuver opening a door and going down a step? Dealing with the heat or cold?  Have someone approach me on my right side and try to talk to me when I cant even see then or know who it is?  Then, additionally, comes the kids.  How am I supposed to watch them away from home and make sure they are safe?  I surely cant run after them.  So, If you wonder if I want to escape from my house, I don't.  If you really want to see how I am or spend some time with me, stop by for a visit.  I'm just about always here and love short visits from friends in between or after my therapy sessions.
Most of all I love watching my children play here at home, get lost in my cooking magazines, for my plants and, well, keep up on my blog.  Soon, hopefully, it will be easier as I will have an ipad to help me out, as the keyboard still is not quite user friendly to me.  Im very excited about my new purchase and continually checking the tracking info online to get the latest stats on delivery.
  I have made some progress out in the community and though I am not playing the role I would have liked to live up to with the Goshen Summer Market, I am attending and selling my homemade goatsmilk soaps.

I also have made it down to the lake/beach here in our neighborhood to watch the kids enjoy the beach.

Despite all our accomplishments this week, we did have a tremendous hole put in our lives.  We had to make the ever so difficult decision to say good bye to our Annie.  She came to us in need of love and support and ended up giving that to us.  I, as I am sure Al does too, miss her more than I thought I would.

It will never take her place, but may have opened a new door for us.  Al and I have always wanted to train a service dog.  Well, a service dog may be just what I could use.  Their dogs are taught to retrieve items, open doors, activate light switches, pull wheelchairs, balance, brace, and perform many other highly specialized tasks through the ECADemy© training program.  This  place I found, and really like, East Coast Assistance Dogs has a waiting list of a year and a half.  By then, I will either really need it...or not!!

After all, that is beyond my six month mark!!

I