Before: Six months after my 40th birthday, I was in the hospital, I have asthma which nets me an average of 1-2 visits to the ER every year, so it wasn’t all that shocking. This time the trip was life-changing, by the time I was released (3 days later) I had been through a series of tests which resulted in a diagnosis of Relapsing Remitting Multiple Sclerosis. Mind = blown.
Cards on the table, I knew something was wrong with my body and mind. In fact my doctor and I had discussed the possibility that I might have MS; however, I never expected it to be real. I’ve been a bit of a hypochondriac for my entire life, so I expected to go through the motions and ultimately hear the words “we don’t find any medical reason for your symptoms”. As it turns out, I also have a benign tumor wrapped around 2 of my vertebrae (more on that later).
I don’t know much about the psychology of hypochondriac behavior, but I actually ignored most of my preliminary symptoms such as chronic pain, frequent headaches, low sex drive, vision problems, and lack of balance. The thing that made me take action was the insurmountable fatigue. More cards: I have ADD which requires a powerful stimulant medication, now I’m not an overly active person, but I was used to having enough energy to get me from dawn to dusk. Starting about 3 months before my visit to the ER, I was having trouble making it out of bed and when I finally did, I felt like I was walking underwater; every step, thought, sound, light, movement, was exhausting, hell even typing on my computer made my forearms feel like I had done 200 push-ups. I spent entire weekends passed out on the couch. Then I started taking naps on my lunch break at work, that was when I had enough.
My husband and I have been together for 23 years and while we aren’t the “schmaltzy” kind of couple, he is my best friend and we spend 90% of our time together outside of work, we even go to bed at the same time. So, when I started saying I was ready for bed at 8:00pm, he also became concerned (in his own way), so we decided it was time for a doctor appointment. I had been to the doctor a few times over the last decade for this very thing. Each time, blood work was done and I was told that other than a vitamin D deficiency, everything looked “normal”, I still have the “all clear” text message from my doctor on Christmas Eve 2013.
I went to my doctor at the end of March, 2015, he listened to all of my symptoms and concerns intently (as he always does), and when I said I wanted an MRI, he obliged. I had the MRI 5 days later and that evening my doctor called me to tell me that our concerns had traction. There were lesions on my brain indicative of MS, luckily I had contrast administered during my MRI which allowed the radiation tech to determine that I wasn’t having and active flare and there where no “holes” in my brain yet (yes, I said HOLES, I didn’t even know that was a thing for non-meth users). At any rate, he wanted me to see a neurologist right away (more on how I chose my specialist later as I have an entire rant about the process that deserves its own entry).
I had experienced a very stressful month during March, 2015. I take my career very seriously and many times my personal life suffers, I don’t take great care of myself, I’m not a good housekeeper, and my bills are always paid late, not for lack of funds, but lack of time. The fact that I actually made an appointment for myself is a notable accomplishment. The first week of April, about a week after the call from my doctor, I was getting out of bed, lost my balance, and slammed down on the hardwood floor, it hurt, but moreover, that was my breaking point, I was going to show this (possible) disease that I run the show and I’ll decide the timeline of a diagnosis. My 17 year old daughter was home on spring break and more than willing to go on a ride-along to the ER. I chose a hospital that has an excellent reputation in our area, they had provided outstanding treatment to my son during his Chrons diagnosis, in fact, I remember balling hysterically during the drive home after his first overnight stay (he was 16, so we went home to get some sleep instead of staying with him), I was so overwhelmed that we had finally found a hospital that was taking his condition seriously. I felt confident that they would help me and that I would have access to a neurologist immediately, I was right. Within hours, I was admitted to the Neurological unit where I was assigned my first Neurologist, and I loved her! She was smart, kind, and aggressive (she would be in my room discussing the tests she ordered for the day and by the time she was leaving, porters were coming in to take me to various wings in the hospital for all kinds of tests). By the end of my stay, I had a diagnosis, I finally knew what was wrong with me, I had stepped over the threshold into “After”.
“Before” and “After” are notable differences for many reasons. I’ve often said that simultaneously, the best and worst thing about knowing, is knowing. Before, when you trip or stumble, you say under your breath “geez I’m so clutsy”. After, when you trip or stumble, a flurry of thoughts run through your mind:
- Is this a relapse?
- Is this a side-effect of my medication?
- Should I call the nurse that the drug company assigned to me?
- Should I call the specialist?
- When do I call the specialist?
- Why isn’t there a manual for this?
- Am I getting closer to permanent disability?
- How often do you have to fall before walking aids become necessary?
- Is this related to X symptom I had yesterday?
- Is my disease progressing normally?
- Should I call the specialist?
- Will I need to live in a nursing home before I turn 50?
- How long will my family put up with my neediness?
- How long will I be able to continue working for?
- Is this the beginning of the end?
- Am I overreacting?
- Seriously, when should I call the specialist?
This series of questions also pops into your head during every other symptom: forgetting words, muscle spasms, bladder control problems, headaches, vision problems, fatigue, and so on. Basically there is not one day, sometimes not even an hour, that passes when “After” thoughts aren’t creeping into your mind.
Which brings me to the purpose of this blog. This isn’t one of those advice-resource(y) type of blogs, there are plenty of credible resources for that; this is me, sharing my story, my thoughts, and my experiences. If something I say or mention helps someone else, that’s wonderful, but this disease is different for everyone and my experience is just that, mine.
I’m also trying to limit my thoughts and feelings to one outlet, not everyone on Facebook wants to read about my various issues, feelings, etc. This way, I get to speak openly, and anyone who is interested, can check in on me when they want to.
Where am I now? Well, for reasons I will explain in future posts, 10 months into my “After”, I am 2 days away from my first appointment at the University of Michigan’s MS Clinic and I could not be more excited.
I’m going to attempt to make this a weekly thing, but I make no promises. In the meantime, if you have a question, suggestion, or advice, please feel free to email me.
Thanks for reading!