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The Beginning: Medical Mystery Series #1

I feel like I preface a lot of my social media posts with this, but I don’t keep my health problems a secret. If you know me or interact with me on Facebook or Instagram, you know I’m chronically ill and have a handful of health issues.

I haven’t really delved into my health history before, but I feel compelled to tell you my story. This is going to be a multi-part series, addressing what I’ve been through and how it relates to some topics that need to be addressed more in the medical world.

Ready to take a journey with me? Buckle up and grab some snacks. It’s gonna be a long one.

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Let’s go back to the beginning:

I was born on a drab Monday in September of 1991. A scheduled Cesarean section made for an unremarkable birth. No drama. No issues. I was 8lbs 8oz of dark haired, happy baby girl.

When I was a toddler (two, maybe three years old? I don’t remember specifically but I’m working off of what my dad remembers) I had some urinary/kidney problems. Apparently I had repeat urinary reflux issues and constant infections. This led to a number of things. What I recall the most was weekly injections: a shot of Rocephin (ceftriaxone) in each thigh, or in each butt cheek. It alternated location from week to week. I was on daily oral antibiotics throughout the entire duration as well. I also had to have repeat annual testing until I was seven or eight years old, wherein I would be forced to lie on a procedure table at the hospital, catheterized, my bladder filled with sterile saline, and I would then be required to tell the doctors/nurses when I felt like I had to urinate, and then I was expected to urinate on myself/the table while the catheter was removed. I finally begged to never have to do it again when I was seven or eight.

Hello resulting intense fear of doctors and nurses. Nice of you to join us.

I also vividly recall the massive amount of time spent at University of Virginia Medical Center (UVA) in Charlottesville, Virginia, about an hour from my childhood home in Culpeper.  I have a sordid history with UVA. Not only did I spent a lot of time there as a child, but one grandparent lost their battle with sepsis there, the other died there of complications from vascular dementia there, my step mother lost her battle with a fatal virus there, and a family friend died from a failed transplant there, too. Now don’t get me wrong, UVA is a marvelous teaching hospital and has worked more than a few miracles in their time. This is in no way a stab at that hospital. I just have tainted memories from there, as one would expect given everything I just told you.

Between my stints at UVA though, I continued to be the sick kid. Constant ear infections, sinus infections, viruses, and assorted other ailments. I hardly ever caught strep throat or the flu, but my seasonal allergies would almost always turn into a sinus/ear/bronchitis combo that needed to have more antibiotics (and sometimes steroids) thrown at it. I also continued to have urinary issues in the form of bladder control problems. I was that kid. The one who wet her pants for no reason. I didn’t have bed wetting issues, surprisingly enough, but I would have constant attacks of just a sudden and intense urge to go that came on so fast I didn’t have time to make it to a bathroom. 

It happened at home. It happened at school. It happened at my grandparents’ house. It happened all the time. There wasn’t really an explanation for it though. After the initial medical investigations resulted in no answers, it became a question of whether I was doing it for attention or because I was lazy. (Hint: neither.)

This became the routine all throughout elementary school. Wet pants, constant rounds of head cold, sinus infection, bronchitis bullshit, lots of doctors notes and makeup work from home made up my life it seemed. Surprisingly I never got held back in school with all of the time I missed from being sick.

Fortunately, I wasn’t sick 24/7. I remember summers at the pool and family holiday gatherings in the winter. I have a lot of memories of running around outside with my friends and acting like a kid, but I also remember a lot of being sick. Eventually an ear, nose and throat specialist (ENT) decided that removing my tonsils might make the constant ear infections stop. I was seven when I had my first surgery. Bye, bye, tonsils! It didn’t really go as planned though. I recovered from surgery only to continue down the same path of constant illness.

By the time middle school rolled around, things really hadn’t changed much. Still sick a lot. Still having accidents. I was old enough to do my own laundry at this point though, so I just never mentioned the accidents ever again. Eventually they weren’t as frequent, but the problem never really went away. The routine continued: missed school, doctor’s notes and makeup work. I managed to keep my grades up, so I was never held back.

When I was 11, during the summer between 6th and 7th grade, I ended up having to have knee surgery.  My parents noticed really uneven wear on my practically new, all black tennis shoes. Turns out I was knock-need. I couldn’t stand with my feet together, because my knees would touch first. So back to UVA we went. I saw an orthopedic surgeon at UVA Kluge (the children’s hospital of UVA Medical Center) who said he could fix me. He was confident that catching my knock-knees right when they did would allow him to correct it and spare me of future back and hip issues.

Hello, second surgery. August 11, 2002, I had bilateral knee surgery. The surgeon hammered two titanium staples into the interior growth plate of each knee. Yep, you read that right. They operated on both my left and right knee, at the same time. I got to be an eleven year old with a walker for the rest of the summer. Recovery sucked, I cried a lot, and I was miserable.

Then we got to do it all over again exactly six months later. I underwent surgery for a third time on February 11, 2003 to have the staples removed from each knee. They went back in through the first set of scars, again on each knee in the same day.  They had caught a growth spurt just right, and during that six month time frame the interior growth plates of each knee were pinned in place, allowing the outer growth plates to grow freely and in turn straighten my legs. I got to endure another crappy recovery, miss a boat load of school, and then use crutches at school for a few weeks. It was fun. (Not.) Oh, and did I mention during both of these bilateral knee surgeries, I lived in a second floor apartment with my mom and had to use the stairs to get in and out? It was a rousing good time.

Onto high school. Still always sick. Still missing a ton of school. At this point I also started having blinding migraines on a weekly basis. I failed driver’s ed. because I missed too much school. Yet again, I didn’t have to repeat a grade though and I kept my grades up. I actually graduated a year early at the age of sixteen by combining my junior and senior years. I also had to take driver’s ed. through a private company in order to get my driver's license, but I did that, too.

College was more of the same. Constantly sick, constant migraines, a few good weeks here and there, but nothing really far from the normal routine for me. By the time I was twenty one, I didn’t really get sick as often. It probably had a lot to do with not being surrounded by other people in classes all the time, now that I think about it. I still had random bladder issues, but I had learned to adapt to it by this time.

By the time I was old enough to legally drink in the United States, I had been put through the medical ringer.

 

I didn’t realize it would actually get worse.

To be continued.


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