A look to the future - Tough decisions ahead - May 2021

Well, I said there would be several updates in May.  This one is loaded with intrigue and science... or something.  The last 15 months have been challenging to say the least with a pandemic, kids and work from home, new normal after new normal after new normal (yes I have a blog post coming about that too).  

Being grumpy at people not wearing masks.  Being grumpy at people who refuse to get a vaccine.  Stalking vaccine sites to try to get a vaccine appointment.  Trekking all over the state to get Abby and I vaccines.  Trying to run the numbers for when the last possible day I could get a vaccine and still be in my 60 day window for getting my MS med will still having 4-8 weeks time after the vaccine before I needed to get my MS med, and now after all that not even knowing if the vaccine will even work for me (MS research with the rNA based vaccines like Pfizer and Moderna show a 22% efficacy rate for people who take Ocrevus).  I may be wearing a mask for a long time yet.  Head spinning yet?

Well mine is... let me just add to the excitement right now...  My MRI in March, while showing my MS to be stable (no new or active lesions on my brain or upper spine Yay!) also showed I have a golf ball sized brain tumor.  Right now that is an okay thing.  It is not cancer, and is not growing very fast (Although I plan to have my neurosurgeon look at my past MRIs to see if he will assess how fast it has been growing since they started doing regular MRIs in 2014... I'm a data girl living in a data driven world...)   https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

Apparently my old MS doctor knew I had this thing in my brain but never found it to be worth telling me about (I read it in my chart a couple of years ago and had to look up what it was... needless to say he is no longer providing me with care.) I was thinking this was just 4-5mm in size but when the neurosurgeon showed me the MRI it was WAY bigger then I thought.  They know it isn't cancerous because it has feet on it that follow the surface of my brain.

Anyhoo, this doesn't mean I am out of the woods.  The problem is the part of my brain this growing mass is in, is also the same part of my brain that can cause symptoms identical to my MS.  Yes that is right... so how does one know if the golf ball in there is causing a malfunction or if my MS is.  Ah, well the Doc said if the symptoms come on like an MS flare, but don't go away then it is probably the golf ball growing further into my brain.  He said I am young and that he is happy to pop in there and get it out for me before it causes more damage.  I was all, um we are talking about major brain surgery yeah, so I think I will just wait and see for bit okay thanks.

The obvious risk with the wait and see option is that if it grows into an important part of my brain and starts causing obvious problems, then it will be harder to remove.  So the place I am at right now is to see if my old doc will send my new doc my past MRIs so the surgeon can see how rapidly (or not) it has been growing the last seven years and have him assess at that rate when it might start causing problems.  I am a data gal and I need more information before I let my perfectly lovely neurosurgeon go poking around in my brain.

Which reminds me of this blog post from President Barak Obama on how to approach tough decisions.  I am asking the tough questions, getting more data, and weighing in with people I trust.  https://barackobama.medium.com/how-i-approach-the-toughest-decisions-dc1b165cdf2d  

And then I just keep marching because LIFE COULD BE SO MUCH WORSE, which brings me to this blog post from MS News about looking forward.  

https://multiplesclerosisnewstoday.com/news-posts/2021/04/12/pandemic-vaccine-looking-ahead Most of my family and friends are now vaccinated or mostly vaccinated so I am starting to look outside my bubble.  I have a birthday in a few days and I have invited some of my vaccinated friends to come spend a couple of hours at my place.  So I have this timeline driving me to clean my porch, parlor, table, counters and get rid of clutter.  It has been two years since I moved in... if stuff is still in boxes I don't really need it do I? Free stuff table in my future... after Mother Nature finishes watering all my plants for me.

I am looking forward to some mini vacations in nature, and time spent with family.  I am spending A LOT of time in my yard planting more things that will make me smile when they grow and bloom.  And I am doing what I can each day to live my best life when so many days this last 15 months feels like we are all just surviving not thriving.  We got this ya'll (I am working hard to change my mindset to the positive).  I look forward to the day when I can give everyone hugs again so here is hoping they are just around the corner.  Be safe out there! 😍🙋

MS Update - May 2021

March was national MS Awareness Month so I thought I would give you an MS update (got distracted so now it is May, and I will have 2-3 updates to share this month).  I started MS Month with an MRI to make sure that my new MS med Ocrevus is working.  If you are following along you know I started this new med almost a year ago.  It requires me to go to an infusion center for day long treatments.  I had 3 infusions in 2020 down in Des Moines all during covid and I don't much look forward to those days because they are long and pretty noisy.  I had my first infusion of 2021 this week and it was way better with noise canceling headphones. I took Aleve with me as the first three infusions caused a pounding headache afterwards but I didn't need it.  I think listening to Spotify on the headphones and reading a book about nutrition in the morning, and napping when the Benadryl they give me kicked in left me in a better mode and no headache this time.  I did have weird weakness in my legs after I finished but it didn't last too long.  

The MRI showed I appear to be responding to the new meds and am for the most part tolerating it fairly well.  I've been a little off the last couple of days since my meds but hard to say if it is the meds fault.

The last 15 months with working from home, kids schooling from home, trying to deal with the stress of a pandemic has been pretty hard on my MS.  Stress is a HUGE factor to how I feel and how often and long I have flares.  I've asked less of the kids because we are all just trying to get through the school year, but being the only adult in the house most of the time I carry most of the burden of tending animals, getting us all fed, cleaning house and trying to get us all where we need to be.  I'll be honest it's been a lot.  Right after that MRI I had a ten day flare with bad fatigue, brain fog, and pain.  Those usually only last a day or two and settle down when I rest but this one didn't and I'll be honest that stuff scares the crap out of me.  

I never know if the flare just won't go away so it is just a reminder that I have to take care of myself and manage the intensity of my day.  I have a regular counseling session to let go of some of the weight.  I've been trying to swim, walk and run regularly, and trying to keep my workload balanced but it still isn't easy.  We all need to listen to our bodies, feed them right, rest when we need rest, talk to someone when we feel heavy, and look for opportunities to appreciate all the good we have in our lives.

We all need to just keep doing the best we can and be kind to each other.  Until next time thanks for reading.