2020

 2020.....great year huh?  Pandemics, rioting, sicknesses, fires, deaths, etc...   Seriously? 

So, I will add MY life stuff in with the 2020 mix of badness knowing it's NOT the year...  it's just time!

The year 2020 has actually been great to my family overall.  The Pandemic has reminded us a lot about the way we live and what is important.  It reminded us we can live with less.  It reminded us to live off local resources.  It reminded us how to get along better as a family.  It reminded us how important it is to take care of those in need.   We  also decided to withdraw most of the kids from public school and begin homeschooling them.  We, as a family, have actually never been happier or more bonded. For that, I am ever thankful.

There were also some difficult times over the past few months.  I took myself off EMS duty...something I fought so hard for just a few short years ago, as I just couldn't take the risk during COVID.  We lost a close neighbor/friend at the height of the pandemic(not related to COVID).  We lost my Grandmother(Dad's Mom), also not due to COVID.  I recently lost my best childhood friend.  I guess that, in a way, was due to COVID.. at least the mental consequences that COVID caused.   My childhood memories will never be the same... 

I could see and feel this last (hopefully the LAST of 2020) hit coming.  I've been noticing some ever so slight cognitive changes, headaches, clumsiness and just the general "not right" feeling over the past few months.  So, I was very glad to have my yearly MRIs and Neurologist consult last week at the Mandell MS Center.  I'm sure, especially if you have read my blog, you know how amazing my Neurologist is. She's accomplished and smart and supportive and very very knowledgeable about MS and all the latest research.  She always starts my appointments off with "How have you been feeling?".  Then, I tell her the good and the bad and she tries her best to "fix" it (usually with a new medication to add to my list).  I decided last year to stop most of the medications, though, because it was just too much.  Instead, I have been trying to retrain my thought process instead.  Most of the MS symptoms are due to nerves misfiring and such.  For instance, sometimes I get severe pain in my joints... like someone is breaking them).  I know this is not the case.  I can see that.  So, I just tell myself its nerves and it will go away... and it does(and each time it comes back I tell myself the same).  So, every time I get some other wacky MS symptom, instead of reaching for a pill bottle, I just tell myself its nerves.  This, i'm sure, takes away a lot of power from Dr Bailey as she cant "fix" a lot of symptoms I have.  However, she is still a great support and wealth of information.  Back to the appointment...  I tell her I have been OK..  but there are a few things that concern me.  I asked her if she reviewed my MRIs yet and she began to look concerned too.  We both already knew at that point.  So, she pulled out the scans and reported to me that the lesions in my brain have actually somewhat IMPROVED..???!!!  We were both puzzled as this does not usually happen.  So, then she reads on..  She tells me there IS activity and changes in the lesion on my brainstem.  This one is the BIG ONE.  This lesion is the one that caused me to not be able to walk.. to write.. to feed myself..  This one is the one that caused me to be in the hospital for...  well.. I dont remember exactly how long but my daughter can tell you precisely how many days(weeks actually).   Dr. Bailey paused and leaned back on her little rolling stool (those stools seem so much more fun and less professional in the pediatricians office).   I reflected on a past appointment a few years ago when she suggested I go on a Disease Modifying Drug called Tysabri. It was a huge deal.  I swore it was going to kill me.  The major side effect is PML (which is basically an incurable, irreversible disease that attacks part of your brain).  The Black Box warning for Tysabri was to use it for not more than 3 years due to increased risk of PML.  Ive been on it for SEVEN YEARS.  She says "we have some options.  I think you are building antibodies to Tysabri.  We can draw labs to determine that and we can take another MRI in 4 months to check progress".  She didn't seem her usual confident self.  So, I questioned if she was happy with this and she replied "Do you remember that appointment a few years ago when we talked about treatments?" This, of course was the one I had been reflecting on for the past 10 minutes.  She then went on to tell me we should make a change, and soon.  She gave me the choice of a drug called Mavenclad or one called Ocrevus.  She went over the ins and outs of both.  They are both kind of new.  So, there is the uncertainty of that too.  I let her know that she is the one that will choose treatment since she knows the drugs best and she knows my MS just about as well as I do.  She informed me that Ocrevus would be my best shot, though it comes with the increased risk of cancer(to which I suprisingly responded "Cancer is treatable").  Ocrevus works by attaching itself to your bodies B Cells and killing them off.  Your bodies B cells are what are responsible for eating away at your  myelin, causing the damage of MS.  Your B Cells are also a major component of your immune system however.  THIS (https://multiplesclerosis.net/caregiver/immunosuppression-ocrevus/)  is a great article to read to explain the immunity component.  If you are reading this blog and are a close friend or family member that visits with us, please please read it.  So, I begin this new drug in a few weeks.  I will get MRIs retaken and bloodwork drawn in 4 months to see if there is any progression and to check how fast my antibodies are regenerating.

I, as well as my family, have come to grips with the new treatment.  After all, as Dr. Bailey says, "Its my best option".  This whole pandemic thing I guess has taught us one more thing, besides those I previously listed.  It has taught us how we will continue to live our lives..  decreasing activities, social distancing, hand washing, masks, home schooling, no EMS, etc..  

Dr Bailey and I agreed: I had a good run there...  but it's time for the next chapter.  And again... it's not 2020.. its just time. 

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.....

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!!!

Whats Been Going On

Well, I figured it was about time for another blog.  Ive been out in the world spreading the word about my upcoming fundraiser and have met so many so many new people.  Some, that even follow my blog already and have never met me.  Its been great and the more I am out there spreading the word, the more I realize why ECAD (East Coast Assistance Dogs) requires fundraising.  It truly is an incredible way of advertising and making sure the candidate is ready to work for their dog.
The Register Citizen ran a great article about the fundraiser , by Hemmings Motor News and by the Brass City Cruisers as well.  Also listed on CT.Now, The Black Top Rebels and more.  The Twilight Cruisers have been wonderful about helping spread the word, and actually made a large donation to the fund.  But you can find the most info on my own site at : http://www.mybeautifullifewithms.com/november-10-fundraiser.html .  Seems like it will be quite the event.  Its even getting air-time on WZBG all of next week.  It might be too cold, or too late in the year for avid Classic Car owners to venture out with their prize possessions, but Im sure we will still get a decent showing and the Wine Tasting Benefit is where things should really get going.  Miranda Vineyard is hosting, Jennifer Devine is presenting a wonderful catering menu, Andrew Jaimeson is the nights musician...and you should see the list of Silent Auction items.  The auction will open at 3pm for the car cruise and final bids must be in by 7:30pm.  The event will also feature two 50/50 raffles, one for each part of the days events and a presentation, at 6:30pm, by ECAD and one of their assistance dogs.  It has been all consuming organizing the activities(kind of reminds me of my job when I used to run the vineyard...I miss it).  It is a bit more difficult now.  Even just driving around and hanging flyers.  Its putting me into places of unfamiliarity and when Im in those situations is when I get flustered and realize how much I AM NOT where I used to be, functioning wise.  However, the more unfamiliar ground I conquer...the more it becomes familiar.
What surprises me is how willing people are to give to my fund (donations, buying tickets, silent auction gifts, etc...) when they hear my story.  Even though I LOOK fine.  I would think people would just look at me and say "well, how bad does she need this, she looks fine to me".  But they don't.  I just posted a link on the facebook page of MY BEAUTIFUL LIFE, with m.s..  It was of an interview with a woman who has MS and how grateful she is of her support network.  When you watch the video she appears perfectly normal and capable and professional, like she could run the world, and then you hear her talk about the things she cant do.  Its amazing to see .....Its just like I feel.  Heres a link to the video :http://on.aol.com/video/the-importance-of-family-support-for-multiple-sclerosis---kellys-story-489140347 
  Ive been driving the heck out of my "new-old" car.  So much so that the breaks have failed.  We are trying a last minute fix tomorrow so we can attend the Borgeson Car Show on Sunday...one of my goals since I got the car.  We attended our first car show a few weekends ago.  The kids loved it.  This car came to us at just the right time.  We are more limited now as to the activities we can do with the kids.  Attending a car show...no problem.  The car is itself is also great for me to drive.  It has a swing away steering wheel that makes it easier to get in the car.  The squared off fenders also make it really easy to see where Im at when pulling in  places... can be a challenge with no depth perception.
  Medically, I seem to remain on an even plain.  No new relapses.  I went for my FIFTH Tysabri infusion yesterday.  I cant believe its been so many.  My MS specialist asks how im doing with the infusions and doesn't like my reply of "well, my brain isn't turning to mush yet".  She doesn't think I should be worried about the high risk of PML that comes along with this medication.  I am though.  I am more worried of having another attack though.  Every time I get a little headache I get scared its going to turn into a 3 day migraine ending in permanent facial numbness or loss of vision...again.  So far so good though.  Nights are my worst time.  It will be a very welcome time when both little ones sleep through the night.  Al and I seem to reverse roles at night...when he is home.  The slightest cry is like lights and sirens to me.  Im out of bed in a flash, half blind,  and ricocheting off the walls and down the hall.  Al only wakes up if I REALLY pester him that its his turn.  I have NO IDEA how he functions properly at work nights.  I think they have 3 minutes from when the call comes in to when they pull the truck out of the firehouse.  It takes me longer than that to wake him sometimes.  At night, as Im bouncing around the house(literally) I often think about the potential of my assist dog.  ECAD makes a soft balancing harness as well that the dogs are comfortable sleeping in.  So, I can just grab on and safely "go to the scene" at night.  OR..I can even send the dog in to retrieve the crying child and bring them back(they wont come down the hall alone at night for fear of monsters....).
  Well, thats about it.  No fun stuff since last post, like sitting on the horse or flying or anything.  Its been all Farmers Market and PTO and Fundraiser.  Fundraiser...I still have 50 tickets to sell... you can purchase on the web site...  you NEED a ticket before the day.  I need to reach my $8000 goal to begin the training process with the dog and I would like to be able to "give back" to all my donors by providing a great night of fun.  So, please come!!
PS- Im having trouble posting pics to the blog site.  So, if you want to see some pics of what we have been up to, go to my facebook page, My Beautiful Life With MS, or my event FB page: https://www.facebook.com/pages/Cruise-for-a-Cause-Whine-for-a-Cure-Wine-Tasting/313818755424067
Looking forward to seeing you all soon

15. Tysabryi on the brain

  Well, the doctors told me not to expect any improvement for my first week home, just ups and downs.  My body is acclimating to being home rather than in a hospital bed 24/7, I'm on a step down program of oral steroids after all that IV stuff, and on way less meds.  Seeing all that, things have been fairly steady.  I have my good and bad days as far as walking.  Sometimes weaker than others and sometimes more off balance than others.  and I never know when it will be.  So, I have gotten accustom to getting around the house in the wheelchair mostly.  Besides, I think it makes everyone feel more comfortable... and my 1 1/2yr old loves travelling around with me.

  I, of course, have wanted to take on the world, especially when Im laying down.  Ive had 2 weeks of HGTV and cooking magazines under my skin in the hospital. So, Im super motivated...until I sit up!!! I have amazing plans of planting garden boxes right out on my deck where I can get to them easily to water and enjoy. Tomatoes and peppers and cucumbers galore.  Ive already got my pressure cooker and canning jars ready!  Also have a line up of garden pots and plants on my wish list to transform my view of the deck into a living wonderland of sprays and blooms. So far, I managed to start 2 small pots of strawberries before I crawled back to the couch.

  My days inside will soon be lightened by our own aquarium,, which a friend generously offered to donate and set up..  We cant wait.  It was one of our fondest and fun memories at the hospital.

 

When we moved into our new house, we opted to ditch the TV, which has been great- haven't missed it.  But, when stranded on the couch for hours on end, distraction of fish will be nice.

 

I have spent a lot of time this week setting up my new web site (www.mybeautifullifewithms.com).  Im hoping it will eventually host my blog and also serve as a resource for all those affected by MS, children to adults.  My hope is when I fine tune the site, I can eventually make an income off it.

 

My next appointment is Wednesday, first thing in the am, with my MS Specialist.  The goal is to start on an MS modifying agent...you have heard me speak about this before if you read my blog, but now its countdown time.  The drug of choice, that the doctor recommends highly, is Tysabri.  Its a great drug, so all the doctors say, and it will give me the most chance at regaining a totally normal lifestyle.  They say it might even halt MS in its tracks and be 80% effective at preventing other attacks.  It is given by a once a month IV Infusion at a center especially trained and licensed.  Sounds great......except if it only didn't come with the "black box" warning label that theres a rare chance it will increase the risk of PML.  Whats PML? Great question. It stands for Progressive multifocal leukoencephalopathy, a rare brain infection that USUALLY causes death, but otherwise renders you a vegetable.  This drug came onto the market, I believe, in 2006 and was pulled off after 347 confirmed cases of PML.  What they finally found, though, is a link to PML and the JC Virus.  If you don't have the JCV, you cannot(so they say) get PML.  So, whats the JC Virus? Another great question.... Nope, it not some rare virus you may possibly contract from a 5 toed ant on the slopes of the Western Nile.  It is a strain of the common cold.  We have 3 kids and a household of 7, we not only have every, we probably create new strains of the common cold.   The JC Virus is so common, it effects 70-90% of the general population. So, just because I haven't been exposed to JCV yet, doesn't mean I wont.  What a decision.  Ya know, looking back, how many sleepless nights I spent dwelling on what I thought were BIG decisions... Like who to date, or if to send my kid to camp,, or if to buy that new car.  The next time you have to make what you think is a huge decision, think about this one: The chance at living a normal life or your brain possibly turning to mush(with NO cure BTW).  I think maybe if I was older, or didn't have kids, or...or...   The doctor keeps telling me what a small risk this is and how its such a front line drug..... I still have two nights to lose sleep over it I guess. and I better start now,   its getting late..