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.
