Mojo – My Means of Mobility
Not An Oh Fuck Moment
This is the story that I shared as a Patient Advocate (I’m Being Paid To Talk; NO SHIT!!!) for a bit of time, a few years ago.
It is also the story that got me fired from that position as a PA – because I dropped the f-bomb:)
My name is Meg and I have MS.
In 2007 my children were 5,7 and 9 and having finished my “having babies” phase, I was on a mission to lose the “baby pounds” and get back in shape. I was very active. My frequent visits to the gym, laps in our neighborhood YMCA pool and running between 6-8 miles 6 days a week, on top of keeping up with my kids had me on the go constantly. I was a young fit mom – with a bright healthy future….or so I thought.
My very first symptom was in my right foot. During the summer months, I began having a constant feeling, or more like a lack of feeling, in that appendage, The best way I can describe it is, when your foot goes to sleep, before you get the pins and needles, it feels heavy (almost like a dead sensation.) And then, you stomp your foot, get the pins and needles and it eventually your slumbering body part wakes up.
I had the heavy dead part, and I stomped, and stomped, but never got the pins and needles.
I spent a good portion of that summer stomping. I also remember that when I was in the shower, I would get a tingling sensation up my spine when I bent over to pick up the shampoo. I later learned that the term for this “electric shock” is L’Hermitte’s sign and that more than likely the hot shower is what brought that symptom to the forefront, but at the time, those two things led me to believe that I had a pinched nerve.
(I don’t claim to be a doctor, but I am very good self diagnosing myself:)
Those two issues continued to be present throughout the summer – but I continued to run and train and play with my kids. By September, the heavy feeling had moved it’s way up. My whole right leg was dead… and then it started in on the left foot. In the back of my mind, I knew something was wrong, that it was more than just a pinched nerve, but denial was a really good place for me to visit at the time.
By early October I was no longer running, because I was too unsteady on my legs (my balance had gotten terrible as result of the dead leg and foot thing) Despite the fact that the symptoms were chronic and now altering my life, I never mentioned any of this to anyone I figured it was going to get better and it wasn’t worth wasting people’s time complaining about something that would eventually go away.
Until, one day, I was at the park with my kids. It was a beautiful “Indian Summer” day, warm enough that I was still wearing summer dresses and flip-flops. I was standing on the wood chips, near the play structure, talking with two or three other moms that were doing the same “good momma’ duty” of getting the kids out in the fresh air to play, when all of a sudden I realized that I was peeing.
Not just a little, like when one laughs, but an honest to god, full stream ahead peeing session had commenced.
I had absolutely no knowledge of this prior to realizing that my legs were wet and that I was standing on wet wood chips that had been dry just moments before. I mention the summer attire, because thankfully the pee had a pretty clear pathway down to the ground and I wasn’t left with the telltale signs of one that has just peed their pants, with a soaking wet crotch.
The other two women did not even realize what had happened.
BUT I did, and I was mortified.
But even more than that, I was scared! People don’t just pee without knowing that it is going to happen.
That is not normal.
This is the moment when I realized there might be something really wrong with me.
That night, after the kids had gone to bed, I called my husband (we owned a few local pubs and he was at work.) I was hysterical, sobbing and probably making no sense at all. The only thing that he could make out from my babbling was that I had peed my pants in public and that I was pretty sure I was dying. I can imagine that the call was more than slightly confusing for him. As I said, I had not told anyone about the other symptoms, so this sudden and complete meltdown must have come as a bit of a shock.
I did have another symptom that had begun popping up. A tightening around my waist/ribcage. I now know that it was the MS hug, but at the time, the only thing I could equate it to, is the feeling of the baby moving when you are big-time pregnant. When the baby decides to pull off a backflip inside and there isn’t any room left for such shenanigans there is a of tightening feeling.
So, that led me to think – I have a tumor! And it is taking over my uterus and I am going to die.
I went to my gynecologists office the very next day, and since I was in such a hurry to have my tumor confirmed and had insisted that I be seen right away,, I was not with my regular doctor, the one that had seen me through three births, and knew my calm, happy go lucky demeanor and my high threshold for pain and discomfort. Instead I was with a young gal (and I feel I can call her that because she was young – as in just out of med school young) She walked in and again, I completely lost it, sobbing and slobbering all over the place. I told her about my tumor and that I probably only had a month to live.
Fortunately for me, she didn’t believe anything I was saying, and remained calm and professional as I lost my shit. She asked a million questions about all the other things that had been happening. And at the end – having never even touched me, let alone required me to put my feet in those god awful stirrups’, she told me that I didn’t have a tumor. She explained how when a woman is not pregnant that her uterus is about “this big” (holding her fist up) and way down low, not up where I was claiming to have the tumor growing. . She also told me that I needed to see a neurologist, because the things I was describing were neurological issues….
Although she tried to get me into to see someone in her hospital, it seems neurology was a hot trend at the time because they were booked out six weeks. I remember hearing her on the phone in the hall saying “this patient can’t wait 6 weeks” and thinking, thank god someone believes me and is going to be my advocate. I ended up going to a hospital that is about 30 minutes from my house, and not one that I had ever really even heard of, but they had neurologists and more importantly one that could see me.
I remember being extremely under-impressed by everything on my first visit. It was an older office building on the hospital’s campus, and it reminded me of my orthodontist’s office from back when I was a teenager – outdated with a strong 70s vibe. But also the exam itself was underwhelming. He had me put on a robe, walk down a long hallway with my ass hanging out while staring at my legs and feet, put a tuning fork on my toes and then told me to get dressed and meet him back in his office. From these two things (there might have been a few others, but they were even less impressive, like touching my finger to my nose) he deduced that I had Transverse Myelitis. He told me it was fluid in my spinal cord that came from a virus. He explained it as if my spinal cord were an electrical cord. If that cord was for your outside Christmas lights and it had a few nicks in the rubber coating on the outside,, water might get into the wires running inside the rubber. The electricity might make it up to the little lights, but it might not, because of those nicks and the water messing up the electrical current. If that happens then the lights will flicker or go off all together.
To this day, that is still one of the explanations that my kids (who are now grown) use when one someone asks about my MS.
My new doctor signed me up for an MRI – a thoracic scan (as that is where he proposed the “water” aka lesions were.) I remember being absolutely terrified. I knew nothing about an MRI. I hadn’t googled it, so I didn’t know it was a gigantic magnet, and as result, wondered and worried about why they kept asking me if I had any metal in my body. (Story about MRI and a hole in my head.) The technician looked at the doctor’s orders and asked, “just a thoracic scan? Not a brain scan?” I remember thinking I don’t know…ask the doctor!
A few weeks later – I got worse –a lot worse. Like barely walking and falling down – worse.
So I returned to the doctor’s office and agreed to a spinal tap.
The day that the results came back, I went to visit the doctor. I recall walking into his office (still unimpressive) and sitting down. My first comment was “so brain scan all normal and right?” His response was a simple “nope” and that is when I heard the words for the first time as he said “you have Multiple Sclerosis.”
When the doctor said I had MS – my first and only response was “oh fuck” – to which he responded “no this is not an oh fuck moment, this is an oh darn it moment. Oh fuck is when your child gets leukemia and dies at the age of 7. Or your spouse is in a fatal car accident, leaving you to raise your five kids by yourself, those warrant an oh fuck. Butt having MS is not an Oh Fuck moment, because you are going to be fine – no one dies from MS.
And so that was it. That is how I learned that I had this chronic disease. And, that brief exchange shaped the way I looked at having my MS. That is not to say that I wouldn’t have been a fighter, and had my ever positive attitude, because those things are just innately me, who I am. But those words have stuck with me, and I have repeated them to myself a number of times over the years.
When things are going bad I remind myself,
This is NOT an oh fuck moment.
To read more about this story and others during my first years of living with this disease, I encourage you to check out my book