There are so many resources available to patients online, but blogs offer a particularly clear window into what life is really like with a chronic illness. Blogs give patients the opportunity to connect with others who may have had similar experiences, which can help us feel less isolated. Blogs also offer us the opportunity to learn from one another!
The Mamas Facing Forward Featured Blogger series will connect you to blogs featuring real moms living with chronic illnesses – all of whom find their own ways to keep facing forward! This article originally appeared on The INTEGRATIVE Mama and is reprinted here with permission.
If you have a blog post you’d like to submit, please email us at info@mamasfacingforward.com!
The Start of Myasthenia Gravis
by Mallory San Nicolas of The INTEGRATIVE Mama
Let me take you back to where it all started… no, not the day I was born but we might actually get there one day. I’m talking about the start of Myasthenia Gravis. It all started in 2013. Let me set the stage for you. 2012 was an awful year for me personally and professionally. I had suffered 3 miscarriages in May, September, and December that year at 4 weeks, 5 weeks, and 11 weeks pregnant. As you can imagine, those losses took a huge toll on me emotionally and physically, but I didn’t skip a beat running our business, CrossFit Barracks, interning for CrossFit HQ seminar staff, hosting competitions, and raising our 2-year-old. We also had an employee betrayal that year and early into 2013 that was equally devastating and stressful on top of what we were already going through personally. As if that wasn’t enough, I got pregnant with our 2nd son in March 2013. I had been pregnant 4 times in less than a year and showed all of the signs of miscarrying him. I remember dropping to my knees and praying to God to please save this baby. They put me on progesterone, baby aspirin and very restricted activity and by the grace of God, Keoni was born in December 2013. Side note, Keoni also means God is gracious.
During my pregnancy, I had similar symptoms to my 1st pregnancy with our oldest son, Makoa. I had experienced the extreme nausea, cravings, some mood swings, you mamas know the drill. Another unusual symptom popped up around my 2nd trimester though. My vision was super distorted. I compare it to being intoxicated; not quite double vision but very close and the inability to focus. It felt like my eyes were crossed but when looking in the mirror, they never were. I brought this up to my OBGYN thinking that it had to be related to my pregnancy. He reassured me that the hormones in pregnancy can break down your eyes and that was likely the cause. I believed him and did my best to live with this new symptom.
Fast forward to after my delivery which was by C-section. I was experiencing significant leg weakness. I would have to manumally lift my leg up with my arms to cross my legs or put my shoes on. It was challenging just getting into a car. The vision issues were not only still present but seemingly getting worse. I went to a follow up appointment with my OBGYN at 4 months postpartum and explained the new and increased symptoms. He again assured me that the hormones in pregnancy would still be present since I was breastfeeding and that’s why my vision had not returned to normal. The leg weakness was attributed to having 2 C-sections and a new muscle hernia in my lower abdomen. He encouraged me to strengthen my core and made me feel like everything was okay.
I ended up breastfeeding for a year and attempted to work out during this time. The vision issues progressed and I was often paranoid to talk to people in fear they would think I was drunk. I was even scared to drive. I noticed the more I used my legs and core, the weaker they would become and after months I felt weaker, not stronger. After I stopped nursing, I waited for the symptoms to go away. I remember constantly asking people if they could tell that my eyes were crossed. They would always reply no, that I looked normal. I considered TMJ, Diabetes, and even Ocular Brain Tumors because I was at my wits end and knew this wasn’t normal. When the symptoms persisted and it continued to impact my everyday life, I knew it was time to schedule an appointment with my primary. After speaking with her in March 2014, she agreed that my muscle hernia and C-sections were contributing to my leg weakness but wanted to send me to a specialist for the vision issues. I made an appointment with an Ophthalmologist who I saw the following month. Ophthalmologists can actually be one of the diagnosing doctors since vision issues and eye drooping are often the first signs of Myasthenia Gravis. This doctor I saw, however, all but blew me off. He only dilated my eyes to check my optic nerve after I insisted. Of course, there was nothing pressing on it and everything appeared normal. He attributed my vision issues to Ocular Migraines and sent me on my way.
“It’s crazy how you learn to accept and adapt no matter how bad you feel or how awful the symptoms are.”
At this point, I was feeling utterly hopeless but also relieved that there obviously wasn’t something seriously wrong with me since none of my doctors appeared alarmed or concerned. It’s crazy how you learn to accept and adapt no matter how bad you feel or how awful the symptoms are. Although I had constant struggles, I continued this way for another entire year. Fast forward again to March 2015. My vision still awful, my leg weakness still apparent, and now new symptoms popping up left and right. After my work-outs, I noticed that my arms would be really weak for hours or days following. At first, I thought it was normal, but it wasn’t like the typical post-workout weakness I had ever experienced before. I would be holding a coffee mug with my arm shaking uncontrollably before I had to set it down. My arms would be so weak that I couldn’t put my hair into a ponytail without resting. There were days that my arms were so weak I couldn’t wash or style my hair all together and resorted to wearing hats constantly. My legs were weaker than ever and so weak in fact that I was scared if my now toddler ran away from me, I wouldn’t be able to chase after him. I resorted to working out in private since I owed a CrossFit Gym and didn’t want our clients to see how weak I was. In private, my legs would often give out from underneath me. It felt like I had sandbags attached to my ankles when I tried to run, and they would be so weak that I couldn’t even carry Keoni when he asked to be picked up in fear of falling with him.
On top of all this extreme weakness, I had a night where my husband made Carne Asada for dinner. Half way through our meal, I noticed my jaw getting extremely fatigued. I ignored it and kept eating, only to lose my ability to swallow which resulted in me choking on my food. I rushed into the bathroom because my mouth felt numb and weak. When I looked into the mirror, I wasn’t able to smile or pucker my lips to make a kissing face. I broke down and cried thinking I had had a stroke. Within 30 minutes or so, everything returned to normal so I felt foolish and silly and blew my symptoms off. I was fine for days after, but eventually the swallowing issues would return and continue to come and go for weeks. When we would go out with our friends, I would lose my smile after a glass of wine. My mom, my husband, and my friends would laugh saying that I obviously had one too many. The more I would try to smile, the worse it became and I would often laugh at myself too because I didn’t know what else to do. It would look like I had resting bitch face or like I smelled something really awful even if it smelled like roses.
On top of that, I had a couple of instances where I was speaking with a client at our gym and after talking a lot (which I tend to do often), I couldn’t talk anymore. My mouth wouldn’t form the sentences. It was awful and embarrassing. So now I had vision issues, swallowing issues, weakness in my legs, arms, jaw, and face. I would also have what I thought were anxiety attacks where I couldn’t get a satisfying breath. They would come out of nowhere and often occurred with swallowing issues. I know now that it was due to diaphragm weakness. I hid these symptoms and how much my quality of life was deteriorating from my husband, my boys, my family, my friends, and our gym community for as long as I could. I didn’t want to be a burden or make a mountain out of a mole hill. I think that I was just dismissed for so long, I didn’t want to continue to be a hypochondriac.
I finally hit my breaking point after more than 2 years of symptoms. My husband and I went on a work trip with 2 of our employees. We went for a staff training in Scottsdale and it was extremely hot. The whole trip was absolutely miserable. I couldn’t swallow the entire time, my vision was horrible, I felt extremely weak, and I couldn’t breathe. During our staff training, the speaker was discussing breathing and respiratory rates and I remember him calling me out in class saying, “See, she’s not breathing very efficiently.”
“Friends may comment you’ve lost your smile; you may notice that jaw muscles tire easily after foods like steak.”
The moment we got home I began googling all of my symptoms. Immediately, Myasthenia Gravis popped up. I read a post that said, “friends may comment you’ve lost your smile; you may notice that jaw muscles tire easily after foods like steak.” Bingo! I knew that was exactly what I had. I even told my husband that I found out what was wrong with me. I didn’t look into the disease further to find out if there was a treatment, if it was curable, if it was deadly. I just assumed that I could be fixed. The next day I called and made an appointment with a Neurologist who would end up being my saving grace, and I will continue that story later this week.
