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Since I was diagnosed a month ago with Multiple Sclerosis I have been contemplating a Facebook post.  Each time I wrote an updated I would delete it.  For some reason I could just not find the right words.  I have so many thoughts about it that my words were failing me.  I copied and pasted some of those updates into my phone notes thinking that I may enjoy reflecting on them down the road. My shortest one, written on a particularly bad day read, “Multiple Sclerosis sucks.  The meds to treat it suck.  There, I said it.” I quickly realized this isn’t how I wanted to break the news.  At this point I had figured out that I better just start in my notes and skip right past opening my Facebook app.  This is what I came up with.

“I have no room to complain really since I know people who have it way harder than I do and make my circumstances look easy.  And I’m not trying to complain, just to explain what has been running through my mind so I wrote this essay:

What Multiple Sclerosis means to me today means something different than it meant to me two months ago.  What it meant to me then was some obscure chronic diagnosis that had no deep emotional connection to me.  It’s amazing how much we learn about something when we have been placed in a situation where it becomes our reality.  

Today MS means scary uncertainty starting with weird symptoms, some of which made me think I was going blind, loosing my mind (yes, there’s the mom brain thing that is not to be minimized, but for those who have experienced true brain fog or memory issues it can be frightening).  It means my arms or legs going numb.  For example, waking up in the middle of the night and not being able to feel half or all of one of my arms or sitting with a friend at lunch and realizing that I can’t feel my leg.  It means being grateful that I can shake the numbness off and feel them again but fear for times when I may not be able to just shake it off.  It means feeling like some days my arms and legs are just so heavy and worn out that climbing a few stairs or holding a blow dryer to dry my hair is a major workout.  It means being tired.  

I now know that MS means LOTS of test, some of them I didn’t even know existed prior to my journey down this road.  Many of these test will become a regular part of the rest of my life.  I’ve spent more than a couple hours in an MRI machine, had a spinal tap, blood work several times, 6 different doctors and had multiple appointments with most of them for well over a dozen medical appointments since the beginning of September.  

MS means lots of waiting, waiting in offices, waiting for insurance company to approve test, waiting for the doctors to call me with test results, waiting for understanding.  

MS means seeking understanding through prayer, through reaching out to those who have walked this path before, reading countless articles and online medical journals during the middle of the night when I was too anxious to sleep.  It means feeling so poorly and spending so much time on doctors and test and just feeling bad and anxious that I had to give up my house cleaning jobs, it means being embarrassed and discouraged that I can’t keep up with work, all my volunteering endeavors and church responsibilities in a way that I would like.  It means relying on others for these things and being grateful for those who have understood why I’ve not been able to keep up and have helped me by lending a hand or an ear.  

MS means taking medicine that has to be not only pre-approved but requires a specialty pharmacy to fill it.  It means having to sign ahead of time that I understand that if my lymphocytes drop too low while taking the medicine that I can get a brain disease that will kill me. I have a team of people (a nurse and a coordinator from the manufacture, my neurologist, and a representative from the specialty pharmacy) who ensured that I was aware if the benefits, and side effects that I would likely encounter and what to do to counteract them when they happen.  I spent hours on the phone with these people before starting, so much that I felt overly prepared and worried.  It means side effects that if it was most medicine I’d stop taking it immediately but knowing that’s not an option I keep taking it even though it makes me feel much more sick than MS alone.  It should get better in time, it does for most people who stick with it.  For now I am working with that team to come up with a plan and additional medicines to help combat the symptoms.  I am grateful to live in a time where we have many treatment options to slow the progression!  

MS means being thankful for medical personnel who work everyday to help me and everyone else live the fullest and best lives that we can. It also means searching for the right specialist who I feel like will provide the best most specialized care for me.  It means that the lab technician who gave me a big hug and words of encouragement the day I was diagnosed gets it too.  

MS also means facing the face that I have a progressive disease, something that I won’t just wake up and have gone one day.  It means denial, anger some days, and yet most days a peace and that I finally know what it is after years of vague symptoms.  It means learning that no two people with MS are going to have the exact same symptoms.  MS means that at least in a small way I now can relate to others with chronic invisible illness and what they may go through and has taught me how to be more compassionate.  I know that I have it easy compared to many who suffer.  

With all that said…. For those of you who know us well you know that our family has a seemingly oddly disproportionate amount of diagnoses and yet we are okay!  We keep chugging along as best as we can and growing stronger in many ways with each new experience.  I honestly believe that when we look at these experiences as ways to be able to help and empathize with a new group of people we become in a small part a little more like our Savior, Jesus Christ.  He alone knows what each of us is going through because he has felt it.  We do have people who are going through similar things though and they can be of such great help to us when we are going through these things.  I hope that as I face this new experience that I am in some way able to reach out to help others down the road who will stumble upon this path as others are doing for me now.  For those who have reached out to me and my family, thank you!”

While this expresses what has been rolling around in my mind very well, I still haven’t posted it.  I”m not sure what is holding me back.  Maybe it is denial, maybe it is fear.  Thank you for reading my story.

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