The Miraculous Lobster

My MS, the miraculous lobster.

Everyone's MS experience is their own unique experience.

Vegetarian marathon runners aren't supposed to lose their health. I was supposed to live and move and thrive in my thirties and the decades to come. I felt I was making all of the "right" choices. I didn't smoke, I didn't drink, I exercised regularly running miles nearly everyday. I had no idea that a disaster was on the horizon and it would change everything. It would take away my plans and change my dreams. It would turn my loving husband, Brian, from a partner into a caregiver. It would take away my beautiful mind. One that I felt could save me from anything. I never know powerlessness until my body, over eager to fight, starting fighting itself.

It all started out with losing feeling in my left hand for six months back in 2012. Somewhere along the way I developed debilitating fatigue. The day before my beloved mother-in-law, Karen, passed away in 2015,  my body as I would know it split forever into two halves. My doctor, frantic to reach me, would tell me in an email I had MS. Now, without medication, I am functionally disabled.

I am one of the lucky 20%. My MS largely disables my upper body rather than my legs. I have two lesions, or areas of damage, the size of your thumb on the left side of my upper spinal cord. There are smaller ones in my brain, but we will get to those sometime later in the the story. My body is split, just like this lobster, down the middle. My right side is normal most of the time. My left side has turned into something like a "fun house" you may have stumbled around in as a kid, never knowing what was coming next.

I have been gifted with incredible MS specialists, a caring GP, and many support organizations. However, my biggest gift has been my friends and family, with my husband topping the list of what I would affectionately call "my team".

The first year was particularly challenging as I was put on and taken off medications that I had only ever associated with "sick people". I slept. I felt high or stoned. I couldn't use my arm. I couldn't keep track of what I was doing. I gained weight. I lost weight. The side effects of the meds went on and on. 

By the time Christmas of 2017 rolled around, I seemed to have worked out the meds that were right for me. Then I got Shingles. Herpes Zoster, like MS, is a disease of the central nervous system and this demonic little virus attacked the areas of my body already damaged by MS. I had a case so bad I can't even find an illustrative picture online. My entire left torso looked like I was burned. Which is how I ended up here, looking to get Medical Marijuana and off of opioids and benzodiazepines. Right now without them I feel a little like this:

I am a sober person, who always believed that medical marijuana was just a reason for sick people to get high. And God bless them. Truly sick people should be able to get high I believe. Why not, for goodness sake. I didn't know then that the drugs coming out of the pharmacy can get you so messed up any high from marijuana is laughable. I didn't know that many forms of medical marijuana don't get you high at all.

I know this. I am in great pain and I am suffering. The heavy drugs make me feel ill everyday. I am willing to try anything at this point. Three doctors in my life have recommended medical marijuana. This is my story if you want to follow along.