Millennial Woman fights through mystery disease
Between the ages of fifteen and twenty-two, my most commonly worn outfit was a hospital gown and my catchphrase was “I’m in pain.” It all began with migraines so severe I’d have to sit alone in a dark room where no light could reach and cover my ears to muffle any sound. Often times these migraines resulted in blackouts where gaps of time would be missing from my life. The doctors diagnosed the migraines as chronic and gave me a prescription before sending me on my way. The migraines only grew more frequent and more intense. Then, I began to experience stomach pains that felt as if my rib cage was tearing through my skin and my intestines were on the verge of exploding. I was diagnosed with gluten intolerance and told to restrict my diet. Once again, the pains only increased. Soon, I became scared to go anywhere or do anything because if I had a flare-up, I would be immobilized for an unknown amount of time. Some would pass in minutes, others in hours, the worst would last days.
I was a girl who loved life. I rode horses, skydived, cliff-jumped, went to theatre school, and played numerous musical instruments. I wanted to experience everything this world had to offer. My mystery disease threatened to take this opportunity away from me — but I refused. So I sat in hospitals and doctor’s offices, with tests being ordered up the wazoo. Tubes were being stuck every which way. Pills were being prescribed that conflicted each other. Blood was being squeezed out of my veins (more than I thought I had to give). Crazy restrictive diets made me hate mealtime. My hope of finding out what was wrong with me, however, was destroyed after being misdiagnosed several times.
At one point I was on a pill for my stomach before and after meals, a pill for my head in the morning and at night, a pill for sleeping, a pill for energy, and don’t forget the pill for anxiety (which I never had before the rest of the pills). I was downing pills I didn’t know the name of and although they were explained to me multiple times, I was still confused on what they were supposed to be doing for me. Despite what the numerous doctors said, I was feeling worse. Each and every time I would complain (which was hard for me to do, because I am not, by nature, a complainer) doctors would tell me, it was in my head. Imagine that? I loved paying premiums, sitting under fluorescent lights, having needles jabbed into me, cancelling plans to visit yet another doctor, and swallowing pills that made me vomit….yes, I must be making this up.
Eventually I had given up, on the pills, the doctors, even myself. I resorted to thinking, “This is my life now.”
This is my life now.
So I stopped taking the pills cold turkey. I stopped going to the doctors who stopped trying. I stopped being on the hunt for what was wrong with me. Instead, I started taking control to find the beauty in life and in myself again. Here’s the part where you hope I give you the cure-all. But unfortunately health is not a ‘one size fits all.’ For each person, each journey, each disease, there will be a different answer. What I can offer is my experience, the knowledge I’ve found along the way, and hope that it can provide some sort of solace to anyone on the verge of giving up.
I urge you to take control in your life. Your journey to health and wellness can start today. No matter how big the goal, or how far away it may seem, taking the first step is what will get you there. Most people believe that my decision to stop going to doctors and taking medication was the beginning of my journey, and in a way it is. However, things got a lot worse before they got better. After quitting the medications I was on, I didn’t see any difference in my health either, but I also wasn’t putting toxins I couldn’t even pronounce in my system — so in my book that was a win. I still suffered severe pains in my stomach, head, and sleeping only became harder each passing night. Then the unexpected happened, my shoulder dislocated. Okay, not the worst thing that could happen to a person. However, after receiving less than quality care from my local hospital, my shoulder fell out again, and again, and again, until I lost count. The doctors kept telling me this was “normal.” Again, I’m not one to complain, so who am I to question a doctor? I certainly don’t have a medical degree. So I suffered in silence (if you ask my mom or fiancé, it may not have been that silent). Until one day we sought out an out-of-network orthopedic surgeon (a fight in itself) and he told me the only thing holding my shoulder together was my skin. He asked me how I walked around each and every day without passing out from pain. I explained my last doctor told me it was normal, so I sucked it up and went about my business. At this point in my life I was a Dean’s List double major college student and retail store manager working between 40-60 hours, overnight floorsets, and early morning stock receiving. I had made a decision a long time ago to not let my health stand in the way of my life — thinking I wish I could readjust now. My new surgeon told me I needed immediate reparative shoulder surgery or I risked losing the ability to ever use it again.
I urge you to take control in your life. Your journey to health and wellness can start today. No matter how big the goal, or how far away it may seem, taking the first step is what will get you there.
The surgery itself was an outpatient procedure and when it was over I was sent home with a needle in my neck to distribute pain medicine periodically. It was explained to me that it was necessary to numb the entire left side of my body because of the work done on my muscles and nerves, if I were to experience the entirety of the pain, I wouldn’t want to live. I was told recovery would be hard and long and it may not have even been successful — only time would tell. What I wasn’t expecting was losing my job because of the surgery, or going into my senior year of college with the inability to drive, carry my own books, move my arm, or participate in any group activity where someone could possibly bump into me. What I wasn’t expecting was the amount of weight gain from being immobile and bedridden for months. What I wasn’t expecting was the fear that took over my life from the idea that it might not work or worse, after all of this, it could happen again. It was too much.
Between the years of being wrongly medicated, a disease that still remains a mystery, and now an arm that restricted my life, my mental status began to decline—rapidly. I became unmotivated, uninspired, unimaginative, and underwhelmed with life. My weight continued to increase as did my pains and discomforts.
It wasn’t until three years after my surgery did I begin my search to restore my health. I began my journey because a doctor had told me my weight gain was dangerous. To put this in perspective I had gained over 50 lbs in three months. Thankfully I actually listened and decided to DO something about it. I began small, nothing grandiose nor praiseworthy. A walk around the neighborhood, drinking more water, reading about different diets, watching videos about fitness, and introducing more raw fruits and vegetables into my diet. I didn’t experience a change or see a physical difference at first. It was discouraging—to say the least. I wanted to give up each and every day. Especially when I’d experience another flare up, it made me question what was the point? During times like these, I reminded myself back when I was trying new pills or diets through my doctors, it took three to six months of testing before the effectiveness was decided so I stuck with it.
Slowly I began increasing my workouts, adding in five pound weights, pushing myself to jog, and keeping a diary of what I was able to accomplish that day and how I felt — I’d put smiley faces for days I didn’t have flare ups and frowning ones for when I did. I noticed as time went on the better I ate without trying, I consumed more water without coaxing, and eventually there were more smiley faces in my notebook than there were frowns. If that wasn’t enough, I had lost 25 pounds in only two short months. I began feeling extraordinary. Something I wasn’t sure I’d ever experience again. My energy levels returned, my weight almost completely shed, my motivation restored, and my self-love began to flourish.
While on this journey which initially started as weight loss for the end goal (which now after 8 months I’m down over 50 lbs!), I’ve learned so much about self-love, respect, and taking care of my well being as a whole. All of the pieces are connected, we can’t begin to feel better if we aren’t treating ourselves better. This is the attitude adjustment I wish I understood going through recovery. It was not that my health was standing in my way of life, but rather my life was impacting my health. When you don’t take the time to care for your mind, body, or soul, and ignore what they are telling you, one or all of them are bound to react. Finding a sustainable healthy lifestyle includes more than just eating right and exercising, it includes grooming your mental status, checking in periodically with your emotions, and figuring out what makes you happy. I still have days where my mystery disease flares up and I spend nights ridden with insomnia, but overall, my quality of life since discovering fitness is remarkable. What I’ve discovered about myself and who I am beyond the pain, has truly been a beautiful journey.
If you’re struggling with any part of emotional, mental, or physical pain, I urge you to envision the life you want. Really paint a picture and then tell yourself.
I deserve the life I dream of.
Then I want you to write a list of what it will take to get there. Break it down even smaller, what can you do this week? Tomorrow? Today? Right now?
Written by Sarah Rock