Let’s rewind to 2001–the year my body decided to start to turn on me.
My health issues started out as “pretty common.” In high school I was diagnosed with tachycardia after a routine physical for basketball and also suffered from migraines. I was instructed to avoid certain workouts (or quit all sports…yeah, right) and increase my water and salt intake. All was good!
In college, my migraines became more frequent, I was getting sick every month and then while training for a triathlon in 2009, my Mitral Valve Prolapse was discovered. The MVP was no big deal to me since Mama Mun has it, too (hereditary). Then my Sophomore year at LSU, I ended up in the hospital for a freak incident. After simply enduring a routine cold (combated with over-the-counter Sudafed) and a few days worth of easy workouts, I couldn’t walk and ended up in early stages of kidney failure. WHAT? The “fluke” incident was diagnosed as Rhabdomyolysis (This one-time incident will make sense in 2015 during my first trip to my Geneticist). I was told it would never happen again but to never take over the counter cold meds again. NOT a problem, Doc.
2012, 3-months into my marriage, I became a different person, rapidly. I was napping multiple times a day, irritable, gained 10lbs in 5 days and I didn’t want to be active. The idea of simply cooking dinner, showering and brushing my teeth almost brought me to tears. I was so nervous that I was suffering from depression. After a simple blood test, I was diagnosed with Hypothyroidism and put on Synthroid.
With my migraines still kickin’ I decided a change in my diet was needed. After talking with a doctor through work, I decided to cut caffeine to see how this would affect my migraines. After 30 days caffeine free, I went from suffering 18 migraines a months to just 8-10 a month! Score–Elimination #1 in full effect –no more caffeine, which means no chocolate, no sodas and no coffee/tea. I noticed my energy increase, my 3pm migraines went away and my skin cleared up some. Double score!! I’ve been caffeine free now for almost 3 years and not looking back.
At this point, my MVP (Mitral Valve Prolapse) was a very persistent friend in my life; constant, rapid heart beat that was misfiring over and over, all day long which was causing shortness of breath, fatigue, anxiety, head rushes and blackouts. The blackouts have been happening since childhood so sadly I am a pro at them now. Many of you have been staring me in the face while they occur and have never known. I simply hold onto something, about 5-10 seconds later my vision returns and Boom, I am back.
Enter March 2015, where things really started to get radical.
I was set to have exploratory surgery (Laporascopy) but after questions asked about my MVP from the Anesthetist, it was decided that I needed a stress test in order to be cleared for this surgery. This in turn became the best thing to happen to me and my worsening health. I frantically found a Cardiologist to do a same-day stress test (Echo, EKC, treadmill jog). I was cleared for surgery but the doctor noticed that my Mitral Valve had weakened further and is now showing signs of Mitral Valve Regurgitaion, level “moderate.” The doctor also noticed that my blood pressure was very low and my resting heart rate was extremely high (without medication my normal resting HR is 122 and BP is 80/50 give or take). I was then diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). After a few failed attempts on some heart meds, my Cardiologist soon came to realize he had a very different patients on his hands; he had to use some higher level thinking when it came to my treatment. I wasn’t responding like 99% of his patients typically do.
Are you lost, overwhelmed or just down right over this yet?? YEAH, me too! Don’t worry, only two more diagnoses remain!
After getting to know my history, my new and wonderful Cardiologist suggested two ideas that would end up changing my life…EVERYTHING as I knew it would be changed forever by these two thoughts.
Idea #1–He suggested I remove gluten from my diet to see if I had an intolerance. My migraines, fatigue and Hypothyroidism made him feel this could be plausible. Oddly enough, I had started the book, Grain Brain, two days earlier which basically told me the same thing. Coincidence? Never.
Idea #2–We were on the search for a Syndrome at this point. I was too young, active and healthy, diet-wise, to have this many diagnoses next to my name. Not only all of that, but I had lost 15+ pounds now in just a few years. I wasn’t getting better…I was getting worse despite my efforts. It didn’t matter how many calories I ate, I was still losing (and still am to this day). There was an entire month recently where I consumed 3,500 calories a day–3 FULL meals containing a protein (eggs, chicken, steak) 2 snacks (cheese, hummus, almond butter, protein bars) and 3 protein shakes a day. Guess what? I was still losing. At this point I had become so discouraged and self-conscious at my already naturally thin build. Peoples comments do NOT help my brain, either.
Back to coincidences…A few days after my Cardiologist suggested we were looking for a syndrome, I was having breakfast with a doctor and his staff for work. After updating them on my latest heart fiasco, the doctor randomly asked if I could bend my thumb behind my hand. My response…HECK YES I CAN, I have been doing this trick since elementary school…it was always a hit; I have always been extremely “Gumby”-like. Never in my life did I think this would be due to a genetic mutation in my collagen. After a few more questions, the doctor suggested I may have something called Ehlers Danlos Syndrome, Hypermobility Type 3. After a call to my Cardiologist and then a referral to a top Geneticist with Baylor College of Medicine here in the Medical Center, in July 2015 I was diagnosed! At first, I was very excited and relieved but then quickly became upset at how my life was going to change. I am very active and a big thrill seeker and now I have many dietary and physical restrictions no one truly understands.
-NO fully straightening or locking of any of my limbs (my joints hyper-extend passed the normal range which can cause dislocations, degenerative joint disease, degenerative Arthritis, chronic pain, inflammation, etc)
-NO weight-bearing workouts (I heal differently, can build scar tissue rapidly when healing injuries and in general doctors do not like to perform surgery on me due to the make up of my altered collagen, so if I injure myself, it will be a nightmare)
-NO running (very okay with this)
-Make my goal weight 135 (even when pregnant, so have the less amount of stress on my joints…this seems impossible)
-NO Gluten (a year gluten-free this March)
-NO foods that cause inflammation (I will get here one day…baby steps)
-NO decongestants (remember my college hospital stay?)
-Closely monitored if I decided to have children (due to my entire body being over elastic from the genetic mutation in my collagen, I am at risk to multiple miscarriages and infertility.)
-NO fun (this is at least what it feels like)
While adjusting to this new body of mine I still felt there was something not right. I took a micro-nutrients blood test and that’s when I was diagnosed with Celiac Disease. I was not absorbing Calcium, proteins, Insulin and around 5 other vitamins/nutrients which would make sense to why I cannot not gain weight to save my life.
As of 2 weeks ago, I started supplements and vitamins to heal my gut (it takes a year of GF diet to do this, theoretically). I am told 4-6 months of this I should start gaining weight and the villi in my small intestines will be healed up. Since I am in a discouraged state I remain a skeptic but I am an eternal optimist so I can only go up from here! I have a wonderful team due to the multi-systemic nature of Ehlers Danlos Syndrome and pray I can feel like my old self again soon!
In the meantime, I have started an Instagram handle called “The Informal Grub.” I found my friends eyes glazing over every time I mentioned the scientific side of whats in our foods and since I am a giant science nerd (thanks, mama) I felt it was only right I start a handle that educates others what exactly they are ingesting, as well as what it’s doing once properly absorbed. After more and more requests for recipes of what I was posting, I decided a “blog” was needed.
The body is truly fascinating guys, and you only get one! Stop eating crap and start taking some risks with your meals. My end-goal is to change the way you view your grub, make it interesting and improve the way you eat and feel. FOOD IS MEDICINE, YALL.
Thank you for reading my never ending episode of House.
Until next time,