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.....