It’s My MS Anniversary (and I’ll Cry if I Want To.)

For me, the day I was diagnosed, comes and goes every year without a nod. The dread that menacingly creeps into my mind begins as the pumpkins on doorsteps appear, and my youngest daughter’s late October birthday approaches. The time on the calendar when my MS symptoms first appeared in a not-so-subtle way, is the one that brings me to my knees with grief, every second week in November.

In November 2012, I was adapting to life with 2 daughters; one a toddler, the other 2-weeks-old. I bundled them up for a trip to the neighborhood park, something that I had done many times with my oldest, but this was our first attempt with the new baby in tow. We made the 2 block walk to the park, and by the time we got there, my left leg started dragging. I could lift it, but when I tried to set it down, it would slap the ground. I tried hard to control it, but each step was more awkward than the last. What is happening to me? Am I having a stroke? My kids aren’t old enough to call for help. Please, dear God, don’t let me die! I panicked, and we started back home. I leaned on the stroller more and more as we neared the house. With rest, my leg returned to normal (mostly), but with any exertion, I developed what I coined as “slapfoot”. I cried many tears of fear and confusion over the next several days as I began to schedule appointments for myself with my obstetrician and family doctor. I was unaware at the time of the long and torturous days that lay ahead of me as I struggled through countless appointments, exams, tests, and misdiagnosis time and time again.

Me, in a rare photo from this time period, looking as overwhelmed as I feel. We were at a parade, but I wasn’t feeling too “parade-ish”.

As the days rolled on, I tried to be as “normal” as possible. My leg continued to fatigue to the point that it was a flipper, and although I began to visit doctors and specialists, nobody seemed to have any answers. It was clear, however, that I was not becoming a mermaid. There was a lot of chin scratching, and skeptical medical faces in my life. I was diagnosed with anxiety time and time again. I mean, sure I was a little “on-edge” but maybe it was the fact that I was trying to carry 2 babies and stay upright with a pasta leg? In any event, I couldn’t tolerate the anxiety meds, and I was certain something was really wrong with me. Not just nervousness, or baby blues, or exhaustion, but that’s what was jotted down in my medical file, time and time again. I didn’t know what to do, except to buy 2 gratitude journals, and step up my church attendance. It was time to ask for a miracle, and believe me, I asked!

I had been living in this body for quite some time now, and I was pretty sure of what it could do. I was fit and healthy before the birth of my daughter, and I knew I had to find answers to what was happening to me, so I immersed myself in Google queries (on reputable websites). I know they say not to do that, but I didn’t have a choice! My worrisome nature was forcing me to earn my pseudo-medical degree online in an attempt to save my own life. Dramatic yes, but I have never been one to panic half-way. After hundreds of hours of internet research, I was convinced that I had Multiple Sclerosis. No one believed me. After many tears and much prodding, my family doctor finally ordered the brain MRI I had been begging for. The MRI came back clear. I even took the images to a neurologist who confirmed they were perfectly normal. I could finally relax. Thank, God I don’t have MS! I am so lucky, and I will try to be the very best I can be now that the nightmare is over. This was definitely the time in my life to hit me up for any favors. I was going to prove to the universe that I was worthy of a fully-functioning body.

When I wasn’t limping with 2 babies or gritting my teeth through tears of frustration, I continued to search for answers that had nothing to do with MS (obviously, since I DEFINITELY didn’t have it). I found myself trying all sorts of suggested medical remedies: supplements, pain management, yoga, chiropractic care on the reg., and hypnotherapy. Hey, I was really desperate. I even wore a molded corset for 3 months to fix a “spinal defect” at the suggestion of an orthopedist, we’ll call him Dr. Bones. Bones was apparently good at fixing bones and earning them $$$, so I felt like I was in good hands. I couldn’t pick up my baby for 3 months, and my life felt impossible. I had to hire nannies even though I was taking a break from my teaching career to be a homemaker, and it was humiliating. Remember to be grateful that it’s only 3 months, and how lucky you are to have dodged that “incurable disease” bullet. Stop complaining about your bum leg and extreme fatigue and move on, you sissy. I gave it 110%. The payoff for my misery would be a normal gait, and that was a price I was willing to pay.

The corset didn’t work. It made me angry and irritable, so it was successful in ruining my sparkling personality short-term, but it didn’t improve my walking one bit. Despair. I had been lead to believe that my commitment to the inhumane brace during the summer heat would do the trick. Afterall, I had been eating all my vegetables and saying my prayers. I was working to be the best mother and wife I could. I didn’t DESERVE this. Dr. Bones suggested spinal fusion. I countered by suggesting a second opinion. Months of trying a million things followed, and I was trying really hard to be grateful that nothing “serious” was wrong with me, all while my body continued to fail. On the surface I was smiling and giggling at my awkwardness, but right below I was simmering with a fear that just wouldn’t go away.

A year had passed, and we were still living in the small Texas city where I had grown up, so Hubs and I flew to Dallas for an appointment with an orthopedic spine specialist. Hey, big city, big doctors, right? This particular doctor had the biggest ego of anyone I had ever met. The air of superiority floating around Richard, we’ll call him Dick, demanded your attention. I was so grateful to be in his presence, though, and he seemed to have all the answers right away. After a brief exam and a NASA style lumbar MRI, he told me that everything looked fine; it was probably just a mild childbirth injury. His advice that followed, “Quit spending your time in doctor’s offices and go home and take care of your kids”. I was embarrassed that he had brought my idiocy to light again, but so glad to hear that I was fine from such an esteemed professional. Naturally, I threw myself passionately back into gratitude journaling. I mean, I was going to get better! Surely, if I was grateful enough, if I tried hard enough, my body would naturally follow suit and get back on track, right? I tried to focus on my blessings: healthy kids, happy marriage, red wine, all while minimizing the losses: my favorite Zumba class, my pride, my art, the ability to wear cute shoes. The losses column was really adding up. I was terrified. I was trying to smile and be resilient.

While trying to focus on my young family and ignore the weird way I was walking and feeling, we moved to Denver. I continued to get worse, to the point that I had to explain myself upon meeting new people: “Oh, that. I have a childbirth injury.” “Sorry I can’t walk over, I have a weak leg.” Gulp. I wasn’t getting better. I was spending crazy amounts of energy trying to “look” normal. Without really talking about it, we started to rearrange our lives to accomodate me. “I’ll pull the car up to the door and let you out.” “Let’s drive the 2 blocks to the park with the kids”, Hubs would say. I started shopping online instead of at Target, because I couldn’t walk that far. I love Target, so I knew the problem had gotten serious. I am falling apart. I am trying so hard, but every day seems more difficult. It was time to visit a neurologist, again.

This time the story was very different. More than two years had passed since the onset of “footslap”. A new brain/spine MRI told the full story. The lesions were now seen on that initial MRI that had been done in Texas (it had been “misinterpreted” TWICE), but now they were much more serious. “Your disease burden is very heavy. Ideally, you would have received treatment earlier”, I was told. That was certainly not a useful thing to hear. Ideally, this would never have happened to me. Ideally, the first radiologist would have been properly trained. Ideally, I would wake up from this F%$#@+! nightmare. I had been bracing myself for these words for so long. I thought I would cry more, but I was numb. Also, there was that glimmer of hope. I had been diagnosed, and now I could finally get treatment. I am so lucky to be living in the 21st century with so many drug therapies available! I am sure they can help me get back to normal. Um, no. More on that roller coaster in another post.

So much for all that feverish gratitude journaling about the dew on the grass and the coffee pot. I should have been trusting my gut and demanding answers. I am no longer racing to meet a quota of filled lines on a page, trying to reach the magic number of gratitude entries that will cure me. I am pretty sure I listed baby’s breath, wine, and rain on the windows at least 3 times, so I was cheating a little anyway. I am so much more genuinely appreciative of the things and people in my life that matter. I am becoming better at letting the small stuff roll off my back, and being less bothered by all of the stares from strangers. I am living with my disease, and not in fear of it, more often than not, and that feels like a pretty big deal.

The day I was diagnosed officially was July 15th. When it rolls around on the calendar, I think, “It’s my dad’s birthday, be sure to call him”. When it is the second week of November, well that’s a different story. A horror story, but I am working on changing that.