Wednesday, March 8, 2017

In as zombies, out as Superheros!!!

Today was 28th day Tysabri infusion day.  It's the day I trudge into the clinic along with all the other MS "Warriors", so they call us.  We look like zombies hobbling down the hall to get "treated" and released back into society.  I feel crippled and bound and weak and, well, disabled as we amble down the corridor.  I spend my 2 hours, that I sit for my infusion, catching up on work and schedules.  I feel more optimistic as I leave, and I wonder if the others do too.  I think of all the things that I AM and that I accomplish. I am a full-time mom of 3 (which is rarely ever just 3), I am an EMT, I am a treasurer, a marketing director, a beekeeper, an artist... The list goes on.  I think "If I can do all that I do.... What are their superpowers'?  It's proven that, in the face of disaster or a major traumatic event, people are their best.  They do things they can't normally do.  They have super-human strength and compassion and drive.  There is something about having an incurable, progressive illness and losing so much that makes me like that in every situation, not just in the face of tragedy.  I listened to someone speak in church the other day.  They spoke of "not just helping someone but going above and beyond".  I hear this so often.... going above and beyond.... and I think....  should there even be such a phrase?  Shouldn't above and beyond be the norm?  When I do something I hope, no matter what it is, that I go above and beyond what is expected. That is MY norm.  That is MY "pay it forward".   That, in part, is me making the world a better place.  That is also, in part,  why I am so busy and so tired I suppose.

Which leads me to my Neurologist appointment.  I was relaying to my doctor my ups and downs over the past few months and how I can take on the world sometimes and then ....there's the other times. The times when I can't even take on sitting up.  She asked if I have been stressed at home (hahaha).  So, I watch her face drop as I tell about taking care of 6 kids and my parents (main support system) being away for 2 weeks, and us working on another home remodeling project.. and ... and... I figured I would stop before she had me committed and not let me leave.  I added that it wasn't the big things that left me fatigued, it was the lack of endurance at the end of the day to even read an extra bedtime story or to do an extra craft with the kids or make that one last stop in order to complete all my errands.  She suggested for me to try a new medication, Provigil.  She went on to say, however, how expensive it is and how unlikely my insurance is to cover it for use as an MS med to fight fatigue.  She asked how long this has been going on and I told her I was doing SO well a few months ago that I was able to go to school, get my EMT certification and volunteer at the local fire department.  Her face lit up!  She excitedly told me how that fact alone, that I went on calls all hours of the day and night, would possibly qualify me to get insurance coverage for this med.  It has traditionally been used as a treatment for narcolepsy for those that do shift work or work odd hours and have disrupted sleep cycles on a continuous basis.  Wonderful.  She anticipates it will make a dramatic change in my life. I can't wait.

Another issue I had to address was my hands and arms.  Lately, I have difficulty typing. Ever since my first major episode of MS when I lost the use of my hands, they don't seem to work independently.  I have to watch them in order for them to perform tasks.  So, tying shoes, writing, stirring something, typing...I can't look away.  Lately, although I chaperone my hands closely while typing, I will look up at the screen and its just a jumble of smushed together words.  I have to almost chicken peck the keys to get my fingers to lift up and move to the next key.  I stress that I do a lot of computer work and when I go back to work its probably going to be computer based and I can even type anymore and...I look up at Dr. Bailey after telling her this and expect her to have this "you are crazy" look on her face but instead, she reacted by telling me it's completely normal.  So, I begin physical therapy asap and hopefully, they can help me get back on track.  She also related this to the spasticity I have been getting in my hands and arms.  When I sleep at night my arms are in such pain, like someone is twisting them almost to the point of breaking.  When I wake up, my fists are clenched and it takes a few minutes to regain normal motion.  Dr Bailey says this is all due to muscle spasticity and a little Botox should take it all away.  That's it?  A few Botox injections in my arms every 12 weeks and they will be pain-free?  This is all amazing.

So, I optimistically prance out of her office and down the hall with all the other MS "warriors" and off we go, a force to be reckoned with.  Until next time.....

Thursday, December 29, 2016

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!!!

Tuesday, August 23, 2016

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.

Friday, March 25, 2016

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 :-)




Sunday, January 24, 2016

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...

Saturday, November 14, 2015

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!

Friday, October 30, 2015

That is NOT OK to ask!

 People have been asking lately how I am doing.  They struggle with what are the right words to say.  Sometimes I intervene because I know what they are trying to ask.  Sometimes I let them struggle as they find a way to come out with some awkward question.  It's horrible of me I know,  but I feel like if they want to ask...they should find a way to.  Also, I struggle daily with feeling awkward and uncomfortable, so why shouldn't they for the 10 seconds it takes to form a question.  I told you, it's horrible of me I know.  Honestly, I don't mind being asked.  I feel that if my friends and family read my blog than they would know, but not everyone has the time or desire.  If I minded people knowing about my MS and how I am doing, I wouldn't share so freely here in writing.
So, how am I doing? I am doing exactly how MS portrays itself, good and not so good.  My Tysabri infusions and other medications seem to be keeping all major symptoms at bay.  Tiny symptoms(which I once thought were insignificant) plague me here and there.  Like the top of my head being completely numb, or inability to focus with me left eye(my only eye mind you), severe migrating pain after having dental work, biting my cheek so often that there is a permanent crease inside my mouth because I can't feel anything on the right side of my mouth.  They are little things and I don't want to pester the doctor every single time something new pops up....but is does make me nervous.  Even a tiny symptom could be the onset of a new lesion.  So, although I don't call the doctor each and every time, I do prepare for the worst.  You know those annoying people that must have every little thing in order and their house spotless before they go away.  Well, that's me!  EXCEPT.....  Each and everything on my To Do list is top priority because of this.  Things that could usually slide until tomorrow, or next week, or next month.  They have to get done today for I don't know if one of these "insignificant" symptoms is a sign of something bigger.  I don't mean to sound as if I have the worst illness known to man or I am going to die at any second.  I do realize that many other people are not as blessed as I am.  There are people not as "lucky" to have an invisible illness.  there are people with Cancer and imminent terminal illnesses.  I say imminent because MS is progressive, there is no denying that.  MS will be the eventual cause of my death....it will just drag out for years and years. Anyway, every morning I write my To Do list on the fridge.  Every little thing:
And every day it is a race to get everything done, along with the usual: Make sure the fish have a clean tank of water, hampster cages clean and hamsters fed, rabbits fed and watered, dogs have a weeks worth of food, floors are clean, laundry is done, dishes are done, bathrooms are clean and have extra toilet paper, front porch is swept, garbages are out, car is clean, banking is done....it goes on...

Really though I have been doing good.  Sometimes so good that I actually leave Crane at home.  Most times I regret the decision, but only after it is too late.  I go off to run my usual errands without her because I am very familiar with my stops.  Then, I unexpectedly stop somewhere I don't usually go and I find myself lost. The aisles are small, the floor is hard to maneuver, there are a ton of people...something...  So, I make it to the car and just come home.  When I get here, Crane is right there to give me the "I told you so" look. 
 This brings me to another subject I have been struggling with.  Everyone who really knows my journey or has read my blog knows what I went through to get Crane, how long I waited, the money I had to raise, how I had to leave my family for two weeks to finally train with her, etc..  Sometimes now I hesitate to bring her places because of all the questions I get from people.  Questions they shouldn't be asking like "Is she still in training"(meaning "why do you have her"), Is she your dog (meaning "why do you have her"), Why do you need her? Is she a therapy dog? The list goes on.  It is NOT OK for people to ask these questions.  I answer them, sometimes honesty and sometimes I just make shit up. It makes me feel awful. Like she is just an accessory.  Like I don't need her.  That is the look people give me, that I don't need her.  The right questions to ask? What does she do for you? What is she trained for? Where was she trained? Any compliments are OK too: She is beautiful, she is so well trained, she must be a big help (she gets these comments a lot and I love it).  Of all the things she does for me, I guess the most important thing, why she is just SO amazing, is that she makes me look like I don't need her.  Honestly, sometimes I don't.  However, she helps me even when it doesn't appear so.  Just a little tension on her leash or handle stabilizes me, helps me walk in a straight line.  Just her setting the pace helps me maintain my balance.  I know if she is walking steadily forward that there is nothing in front of me to trip on.  Just her being at my side lets me know I am not going to bump into anything on my right.  See, I never see her when we are out.  She is in my blind spot.  Sometimes my kids will tell me how someone "sneaked a pet" or she did something funny.  That's the amazing part.  I don't even see her.  Just because I don't see her though, doesn't mean I don't need her.

Saturday, October 3, 2015

Living the dream!

I guess children are always what drove me.  I used to teach riding lessons to kids, help kids, babysit kids.  I used to make plans to be a mom, thinking maybe I would adopt before I even desired marriage.  It was more than an internal clock.  It was different than that.  It was more of fulfilling the person I should be I guess.
  My horse was my child "back then".  I spent hours on end and days on end with her.  I used to take her jogging with me.  I took her to college (Kentucky) and spent more time in the barn than at school. My parents thought she was the only grandchild they would ever have.  My mom would sew her blankets and saddlepads.  Her (my horse) and I would have long talks and walks and I was even known to sleep in her bed rather than mine.  I ended up getting married. Family and friends would push me towards kids, saying "you will never know how your life will change, how it will teach you commitment or bring you joy until you have kids".  I assured them I already knew all that.  I had a horse.  She needed me just the same, brought me joy just the same, taught me commitment just the same.  I mean...I had to feed her 3 times a day, every day, pay for all her needs, etc..  I had her since she was a year old.  Then I had my daughter.
  OH....MY....GOD....Life change?  Biggest understatement ever.  It was then I realized the conspiracy of the "parents" of the world: To bring others right to the brink as those before convinced them to do.  I raised my daughter, part of that time as a single mom.  In that circumstance, there is no one to back you up, no one to take over when you are sick..or tired...or have to work...or...anything.  I did it though.  It was SO difficult.  However,  looking back, all those times when I had no one to lean on, no one to take over...those were the times her and I bonded the most.  Those times were something that most married parents don't have.  To this day, when things get tough, her and I fall back on those times that it was just the two of us.  It has a strength I cant explain.
  My "drive" kept tapping me on the shoulder, pushing me...shoving me.  I knew I wanted more kids, a big family. I had absolutely no idea how I would get there, but that was the goal.  I married my current husband, bottom line, because he was a good dad to my daughter.  Of course, we had more kids.  First my son...
 ... then another daughter.
...then we realized ...they out-numbered us.  Then friends and family started to tell us "it gets easier as they get older".  Let me tell you,  it is not getting ANY easier.  I leave the house 5 times on normal days only to get them to school and back.  My mom day begins at 5:50 am and ends between 9 and 10 pm.  I do get 2 1/2 hours off (for the first time in 3 1/2 years), but most of the time that is filled with school duties (volunteering, coffee hour, emailing teachers, checking grades, preparing for when they get home, etc..).  I look after a friend's children after school some days.  So, there are 5 of them.  They run and yell and play and..sometimes bicker and fight.. and mess things up and break things and eat everything and drive me utterly crazy.  And then when it ends and everything settles down and I realize I have made it past the breaking point and to the other side, alive.  THAT is the feeling I love.  That is my drive
   My children are what drives my energy, my spirit, my strength.  They are all I thought of when I was in the hospital being diagnosed with MS.  They are why I had to come home and why I had to get better.  Without them, there would definitely be some days I would not even get out of bed but they need me to. Or even something as simple as when Al is away for days and I am completely exhausted and all the kids are sick and all I want to do is sleep for just a little bit and someone needs a chocolate milk in the wee hours of the night and my body doesn't work and my eyes don't work and I don't have enough energy to go up and down the stairs. I cant do it.  I just can't.   But I do.
                                         Nothing is more important to me than my children.

  Our youngest daughter, Amelia, has a heart defect.  It has been observed since she was in utero.  Now, she is old enough to have it repaired. She is scheduled for heart surgery later this month.  The surgeons are very positive and assure us it is a “routine” surgery. The surgery will be done at Connecticut Children’s Medical Center on October 26th.  She is expected to be in the hospital for approximately a week.  During this time Al and I will both be staying in  Hartford with her.  During this week the main concern is inflammation around her heart.  After she is cleared by the hospital she will come home.  She will be at home (with trips to CCMC for check-ups) for approximately a month before being allowed to return to school.
   We are currently unsure about visitation, in the hospital or at home afterward. So,  If you live nearby and would like to stop in, please check in first with Al or I. We have had many questions by friends and family in regards to what they can do to help us.  As you can imagine, though the surgeons use the word “routine”, open heart surgery on your child comes with much stress.  We are not entirely sure what we will need over the next few months.  If you feel you want or need to do something, we are working on a list of things that could help Amelia and our family.  Just contact us.  Otherwise, we just ask of our friends and family the obvious...just give us a "free pass" for a bit here.  Accept our apology in advance for not calling back, or not wanting to go out, or forgetting things... and on the same hand...be there...call us back...come out if we need to get out..don't forget about us :-)  you know....the things you already do :-)   Thank you!

Monday, July 20, 2015

Sunday

Sunday.  Smooth Jazz Brunch on the radio.  Cleaning the house is my task for today.  Not just cleaning, like..toothbrush, toothpick, under, over, behind cleaning.  No room is left untouched.  Sometimes it is worse than others. Sometimes it is just Sunday cleaning...sometimes it is like this Sunday.   This Sunday, it was the house, sunporch, decks, garage... Then comes dinner.  It has to be perfect. Labor intensive five star perfect and with wine to pair, of course.  It is my favorite day.  THIS is what I love...and the more kids running around during the process the better.

Today is Monday.  I feel like I've been beaten, run over, left for dead.  Every muscle aches from the top of my neck down to my feet.  I still haven't figured it out.  It is almost like self-inflicted punishment but I don't know what for.  I LOVE it.  I always remember, back when I managed the vineyard, how many cleaners I never had return because I could do a better job myself...and I did...don't get me wrong.  I just thing somehow..its punishment.  

Besides cleaning my house ( :-) ) I have achieved some other accomplishments this week.

I took the family to ECAD Dobbs Ferry, NY to re-certify Crane.  Every year I must pass our Public Access Exam and other ECAD requirements in order to keep Crane in my possession and be legal to bring her into public places with me.  One of the requirements is weight.  The dogs can be no more or no less than 5lbs from the weight at graduation.  Crane's weight was 64lbs at graduation.  At testing she weighed in at 66lbs.  Those of you with Labs and Retrievers know how difficult this is.  As far as the Public Access Exam, Crane was a star.  At one point the instructor had us go up an elevator (loading and unloading from it correctly).  She had me bring Crane to one end of the hall, give her the "down-stay" command and walk all the way to the far end of the building.  She told me I had to turn and face Crane, call her to me and get her in the "side" or "heal" position.  Oh, and also.....there was beef jerky in 2 locations between her and I.  ...  ...  Great .. ... Oh, and by the way, if she eats it....I fail.
Here goes nothing.  I turn, call Crane, and what does she do?  She stops....at the jerky....she sniffs...  I tell her NO sternly.  She opens her mouth....  She reaches down..... She grabs her leash and she comes running right at me, gives me her leash and lines up on my blind side without me even having to tell her the command.  THAT is my dog.  THAT is who she is!  Not only did she pass, the trainers were slightly sad that she did not even look at them, acknowledge them.  They are the ones that made her who she is.  So. I took off her vest and gave her the "release" command and she licked and jumped al over them like she was a pup again,  :)  They then issued us our new license and off to Legoland we went!!
I also had the Tirerack Street Survival experience this week.  The class was held at Thompson Motor Speedway.  It is meant for teen drivers.  To make them realize the unexpected scenarios that can happen while driving and how to properly handle them.  I have been driving fine since the vision loss in my right eye.  I always have driven safely...So I think.  I've had my license for 24 years and have one accident on record.  I also have three young kids.  So, "I think" isn't good enough for me. I wanted to make sure I can still react quick in unforeseen incidents.  This class was perfect.  The classroom stuff....it was like teen driver's ed, but out on the track..that was a different story.  They had us do 4 different driving exercises: Panic braking, slalom, skid pad and emergency lane change.  They all put the driver and car to the test.  I got to see how fast my car accelerated from a standstill and then how fast I could get it to stop in a straight line.  I was able to experience weight load ratio as it affects the potential of roll over.  I tested my skills on making a split decision with emergency lane changes.  Then, there was my favorite, the skid pad.  The fire department flooded the skid pad and we were able to see how much it would take for our cars to break loose and loose traction.  Exhilarating!  Well, as exhilarating as it can get in a minivan :).

https://www.youtube.com/watch?v=9AfDHF8pMww

So now what?  Nothing great.  I go to Yale this week.  It is my annual MRI and Neurology appointment.  Among other issues, my treatment with Tysabri will come up.  Recommended treatment period is 2 yrs.  I am soon approaching that.  So, I need to choose whether to increase my risk of PMI, this non-curable brain degrading disease or try my luck at another treatment.  Yay.  
I will keep you posted
Until then, here's some extra reading material by yours truly.
 http://mymsaa.org/publications/motivator/winter-spring15/inspire/
www.mybeautifullifewithms.com


Wednesday, July 1, 2015

Welcome!



Where to start?  It seems like it has been so long since I have written a blog post.  So, I guess I will start with what I have been up to:
Last month was officially my last month as President of the PTO at our local Elementary School. This decision, obviously, came with many mixed emotions. I loved loved loved the position, the close relationships with teachers, getting to know 176 kids.  However, with a small town such as ours, even small roles become politically involved. That part, I will not miss. I will terribly miss the others.  Also, with all my upcoming events, I suppose I had to give up something.

So, all this free time now..what am I doing with it?  Well, The Goshen Farmers Market starts up this Saturday.
 This has been my "baby" for 2 years now.  A very passionate group of locals started this market up years ago. They are dedicated and "never-give-uppers" but the market turned into a few vendors sitting around on Saturdays in a school parking lot for a couple "never-give-upper" customers.  So, (you know me) I felt compelled to help.  It's been 2 years and with the help of the market founders and some other key people we are a CT State certified market.  We are one of only a few markets at a CT Vineyard. We have live music, kids activities, vendors galore, etc...it is wonderful....and A LOT of work.  I have taken on "the official" role of Treasurer and Marketing Director.  However, there is much more that keeps the wheels turning: music coordination, craft and activity planning, insurance coordination, emails, event listing social media, press releases, branding, vendor recruitment, sponsorship recruitment, website updating, etc, etc...  So, is THIS weekend,  If you are local- PLEASE BE THERE.  At least check out our website www.goshenfarmersmarket.com  or Facebook at www.facebook.com/goshenfarmersmarket
These were my accomplishments this week:
My other accomplishments this week? I finished my first book.  Yes, I wrote a book!  It's just a "starter" book to get the feel of what it takes to go through the publishing process.  If I am lucky, in 6-8 months, I may possibly get a reply from one (or maybe more) of the 30 or so publishers I sent the manuscript to and I might get an offer to have it published. By then I will hopefully have completed my second (It's currently all in my head) and then my third...which will take quite a while I imagine.

What else?  Al and I are graduating next week.  Some of you know that we have been taking a training course for the past 11 weeks.  Next week we will become certified Foster/Adoptive Parents through the state of CT.  http://www.ctfosteradopt.com/fosteradopt/cwp/view.asp?a=3795&Q=498606.  So, there is a chance you will see us with another child..maybe more over the future months and years.  We are not allowed to post pictures of our foster children on Facebook and we are not allowed to tell you about their history, their family or why they are in foster care (nor do we want to).  I think back to one of my favorite books, Choosing Civility; The 25 rules of considerate conduct(a must read).  Just because someone is curious about something doesn't justify their question or deem it appropriate.  We just hope our friends and family will welcome our children and know how happy and fulfilled this venture makes us.  This is something we each always wanted to do and now that we can't have more kids ourselves, what better time to possibly help others.  We thank you, in advance, for your support and respect!

Relating to the above,  here is my soap box lecture / pet peeve for this blog:  Making people feel welcomed.  I have spent a lot of time thinking about this lately, how some people are welcoming and comforting towards others and some are not.  It takes a lot of strength and the ability to put yourself aside to actually welcome people into your life.  To share your life with them and make them feel comforted and a part of your life.  I believe a lot of people aren't capable of this because of such things as they are too self-absorbed, or too consumed with their own agenda.  Or, they are cold, insensitive or compartmentalized to some degree.  When people are like this, it doesn't make others feel welcomed or comfortable and when you're not comfortable you leave.  Sure, sharing your life openly sometimes comes with its downfalls.  It makes you vulnerable, it opens you up to "favors" because people feel comfortable and...sometimes...people feel comfortable that you DON'T want to.  All of those have their positive twists though.  I think feeling vulnerable is a good lesson, it's humbling. Favors, well as long as they are well intended, are only time or money. As far as people feeling welcomed into your life that you wouldn't necessarily want to feel that way?  You are leading by example.  You are teaching others how to behave with grace and sensitivity.  Just an observation about life that I never would have noticed prior to my new life, the one with MS.  I'm done.

OK.  So, I always go to extremes right?  Speaking of that, I decided I should refresh my driving skills.  I believe I am still a safe driver.  However, with my limited vision, I want to be sure I can handle unforeseen incidents.  So, I signed up for a program called "Street Survival".  It is held at Thompson Motor Speedway and its next weekend.  I CANNOT wait. We are making a trip of it and also visiting the Worcester Ecotarium.  The event coordinator for Street Survival, instructor and race car driver coincedentally only has vision in one eye also.  Cool, huh?  Well,,,,, you know what I mean.

I guess I should mention my MS huh?  It is holding steady.  I do have many more good days than bad lately.  Though, I still have daily nagging symptoms, I seem to be able to push through them better. My one weak spot is headaches.  Extreme headaches.  It was recommended that I go to a headache specialist to determine if they are nerve related, ocular or maybe cluster but I really see the doctor way too much.  For now, I hang in until I just feel like I am facing 2 options: 1. death or 2. Hospital.  Then, I call up Al and he puts me on oxygen for a bit and gives me a pain pill. That seems to take the edge off.  Otherwise, I am just plugging along.

I am coming up on A YEAR now that I have had Crane, my Service Dog. I still cannot comprehend that.  Time flies.  Each year I have to get re-certified and pass a Public Access Exam to remain able to go into public places with her.  The laws are cracking down and no longer are Therapy or Emotional Support dogs allowed to go out into restricted public places.  So, this exam and re-licensing is important.  After my third year, Crane is officially mine :)  I am very lucky to have her.  She is SUCH a help and comfort.
I will leave off on that note, as I have a trillion things to do.  The kids are now in summer camp and when that is over it is school FOR ALL OF THEM. WOW!!!!  Think of what I will be able to take on then ;)
Cordially,
    Tina









Friday, June 5, 2015

"Living The Dream"....

     I recently visited the website of an old friend. They invite the "everyday person" to live the "good life".  They offer to bring "these people" opportunities usually only available to the "inner circle".  Yeah...  I kid you not!  This friend's statement of "living the dream" always struck a nerve with me.  Maybe because I was a single mom struggling to get by and provide the best I could for my daughter and I.  Or maybe because this phrase he used wasn't used as I would use it, but as an elitist.  I think he thinks everyone's idea of "living the dream" is "living HIS dream".  I am Living The Dream too.  I have an amazing family, incredible kids, a wonderful home, great neighborhood, etc....  I could go on but you all know my motto, My Beautiful life, with m.s..  I can guarantee the majority of people that know me would not want MY dream, MY beautiful life.
  On the other end of the spectrum,  I also hear other people talk and judge in regards to disability.  I suppose I used to do this as well.  As I said in my last blog, in words of a friend: There are just things you don't understand until you are humbled.  I used to think "why are THEY on disability?".  They are taking advantage of the system.  Well, now here I sit, on the other side of the fence.  Most people that see me, I am SURE would disagree that I should be on disability with ALL the things I can do. After all, I look fine.  However, everyone's situation is deeper than just a look.  Could I get a job?  Probably. Would it be difficult? Extremely.  Could I do the job I used to before MS?  Not a chance.  People on the outside see what they want.  They do not see the things I CANNOT do.  Some days I cannot walk. Some days my vision is so off that I do not drive and I cannot type because I hit the wrong keys.  Same with filing papers, I just cannot see straight enough to differentiate between files.  I cannot do simple things in my life, like bike, or skate, or even run.  Take a second and imagine that!  I have 3 kids.  I c-a-n-n-o-t run, bike or skate with them. Sure, we do other things and I boast that fact because there are only "other things" that I can do with them.  That is a price I pay.  That is a price I pay to be able to be home with my children and get the small amount of Federal Income the government thinks I need to get by.  I make the best of it.  As a matter of fact, I am SO good at making the best of it that I honestly feel I am LIVING THE DREAM.  Huh.  Look at that.  Full circle!
More to come soon.....

Wednesday, April 15, 2015

I am not the person I used to be

I get feedback and concern from the realism of my blogs. People think I'm not in a good place, obviously people that do not have an incurable illness.  Nonetheless, here's to them:

I am not one to brag.  I believe in being humble and simple and down to earth.  That being said:
I pride myself on taking care of my house and 3 children.
In a mere 13 weeks my husband and I will be approved foster/adoptive parents.
I am a Beekeeper
I, obviously, am an avid blogger and strive to help people by it's posts
I am the local elementary school PTO President.
I am The Goshen Farmers Market Treasurer and Marketing Director.
I am a member and on the House Committee of Torrington Country Club.
I am a Volunteer/Representative for ECAD (Educated Canines Assisting with Disabilities)
I, and my family, are Home Handlers for ECAD and take Service Dogs in Training home on the
   weekends.
I make Goat Milk Soaps and All Natural Body Products
I help local friends establish their marketing techniques and websites.
I have 2 dogs, more rabbits than I can count, a goat, a lovely tank full of tropical fish and HAD (as of
    a month ago, a horse).
I am a flying enthusiast, whenever money allows.
I am an artist, whenever time allows
I am a member of the local Congregational Church (though I would like to attend more than I do).
I am a wine enthusiast and hold an advanced degree (with Merit) from the Wine and Spirits        Education Trust.
I have a passion for preparing and cooking exquisite meals for family and friends.
I love to garden and get my hands dirty and watch things grow.
I could go on... and on... and on..


One of my family members came to see me the other day and told me that "people at her work talk about you"...I roll my eyes...  "They are worried about you,  they say  you do too much".  Uhh Huhhh.  You know when you don't continue to work on a skill, you lose the ability to do it well.  If it wasn't for the hours and hours I spent writing and re-writing the same thing, page after page, in my journal while in the hospital and after I got home, I know I would still not be able to write. So, I do stuff.  Everything.  Part of it might be fear, yes.  If I let my brain take a break I feel there is a chance something, some lesion or something, could sneak in and get it...to slow me down.  Some people watch TV (movies here and or a mini-series), some people take naps, are avid readers, sit down for a drink with friends (I do this occasionally), have a long commute, etc...  I simply take all that "static time" and fill it with other things.

I do all of this, not at all like I once used to.  I also don't react to things or people like I once used to. Then again, I am not the same person I used to be... far from it.