If you’ve never heard the term before, describing myself as a Zebra may be a bit confusing. Obviously it is a metaphor, but you’ll have to keep reading to find out why I’m considered a zebra. This past week I finally got the diagnosis that put everything into place. However, to get the full story, we have to go back over 20 years.
My early childhood was fairly normal by all accounts. I had frequent “growing pains “ asa young child, but I was given Tylenol and told it would pass. Truth be told, I didn’t think much more about it. I was always quite flexible and my parents affectionately called me their pretzel. My grandma has always been an easy bruiser and I appeared to have inherited that trait. My parents thought nothing of any of this. When I was in fourth grade, I began having intermittent insomnia episodes. We’re talking up ALL night even with Benadryl and Melatonin. Nothing could get me to sleep. This was a bit unusual to my parents as I slept through the night at 2 weeks old and took literal 6 hour naps as a baby. This was never followed up on so to me it just became my new normal.
When I turned ten, I began to complain more and more about my “growing pains.” My parents chalked it up to my age and perhaps entering puberty. I had no reason to doubt this so I figured it was normal. When I was in 5th grade, I suddenly developed a very swollen right knee. I explained it had kind of bobbled out of joint. My parents had my uncle who was a surgeon take a look. He diagnosed it as patellar tendinitis: aka swollen tendons under my kneecap. He did say he wasn’t sure why and advised my parents to have me get it x-rayed. News flash: I did not get an X-ray at that time. The swelling eventually went down, so my parents figured it was fine. The pain never truly went away.
By 6th grade, the throbbing in my knee had only continued plus there was a new grinding pain. I noticed a lump on the side of my knee and brought it to my parents’ attention. Again, they referred to my mom’s brother. He said, and I quote, “When was the last time you had an X-ray?” When I explained I never had, the look he shot my mom was scorching. He told my parent I had an osteochondroma on my knee and it would likely need to be surgically removed. An X-ray confirmed this and a month after my 12th birthday, I had it removed. We were all hopeful this would solve all of my knee pain and I could go back to being a normal kid. Guess again…
In 7th grade I continued to complain about the knee pain. In fact, it was no longer just my right knee. I was taken back to the doctor who had done my surgery. She told me that there could be scar tissue and we could do an exploratory surgery to see. She also suggested I would grow out of it and it likely was all in my head. I don’t think I need to tell you I didn’t go back to her. That was the first time I had a medical professional not believe me and brush aside my pain. She was far from the last.
As I went through high school, more and more joints joined the painful party. By the time I was in 9th grade, it was every joint from my jaw down. I tried not to let it control my life. I still did figure skating, swimming, and cheerleading. It was somewhere in this time frame where I was now considered to have hypermobile joints and not merely flexible. I did physical therapy on and off, but there was never really any change. My dad began to take me to various specialists to try to figure out what the heck was causing my pain. I saw a neurologist. My brain MRI was completely normal. I saw a rheumatologist. My blood work and full body bone scan was also normal. Again, I was told I’d grow out of it as it was all in my head. When I was 16, I said forget it. I was done with doctors. It was challenging to get me to go even if I had something obvious like an ear infection. I frequently would sprain and dislocate various joints, but I delayed going in when at all possible.
This is also when others began to think I was faking it too. I would have what I called, “joint attacks” where everything would be in excruciating pain for days. It was so bad I could barely leave my bed and even something as simple as sitting on the toilet caused me to tear up. Coaches started rolling their eyes. Friends and teammates thought I was over dramatic. Needless to say, by 14 years old my mental health issues had begun and by 16-17 they were in full swing.
When I graduated and went to college, I chose to not let anyone know about this chronic pain. They knew I was hypermobile as that much was obvious. I also wore specially made orthotics to help with my severely pronating ankles caused by flat feet. The only thing about my health people ever noticed was my chronic bronchitis: I would get that crap 4-5 times a year. I just chalked it up to getting sick. When I was suffering from a joint attack and/or insomnia, they noticed I wasn’t feeling well and told me to go home and rest. Yeah… that didn’t actually improve anything though it likely also didn’t hurt. On a few occasions where my joints would just not stay in place, I would wear braces to help stabilize my joints. Even in college that got some weird looks. I went through all of college without looking into my chronic illness at all. I had given up on doctors.
Right after college, I got a job working for a local newspaper. That is a whole different story in itself that I doubt I’ll be sharing, but suffice to say I learned a lot in that time frame. My pain had still not gotten any better, but I just was living with it. I was only 21, but dealt with pain every single moment of every single day. In July of that year, I suddenly came down with bronchitis again. I was fairly worn down at this time as I had recently gotten out of an abusive relationship. It got so bad that my parents brought me to the ER. I finally figured out why I got sick like that so much. I had uncontrolled asthma that was triggered by allergies. Well, my main allergen is dust so you can imagine how easily my asthma was triggered. I started to gain a bit of trust in doctors again. Not enough to do much about it, but enough to at least get a primary care provider. It was also around this time that I met the man who would one day become my husband. Truthfully, I didn’t really tell him much about my chronic issues at this time. It’s not that the pain was any better. It’s just I had learned to pretend everything was fine. I didn’t even really tell anyone my internal organs had joined the party to being painful too.
In January after I graduated college, my then boyfriend and I moved out of the area for his job. I got a job as a paraprofessional in an alternative school. I spent my 22nd birthday in the ER for severe abdominal pain that was chalked up to “gastroenteritis.” I was diagnosed with GERD and told to find a primary provider in this new area. While he wasn’t the one to fully put the puzzle together, this new doctor I saw was the first one who believed me and started to figure out what he called my “lifetime hobby”. I will forever respect that man. He first noticed that I had gotten the family inevitability of a hypothyroid. This wasn’t a shock as nearly everyone from both sides of my family has it. He began looking for everything he could. I got blood tests, colonoscopies, physical exams, you name it. Nothing came up abnormal. I had a slow gallbladder, but a very rude general surgeon said it wasn’t severe enough to take out. A gastroenterologist told me she didn’t suspect the pain had anything to do with my GI tract. Finally, that wonderful primary of mine diagnosed me with fibromyalgia and an anxiety disorder. (Please note, I’m not entirely sure if I actually have fibromyalgia or if I only have the main condition I’ll reveal later. I may well have both, but since the diagnosis is so new I am not sure.)
This was also the time frame I started having trouble opening up my mouth fully. I went to the dentist and was told I had severe TMD to the point my jaw had locked. My jaw had been popping out of place so frequently that my jaw disc had warped causing it to get stuck and lock my jaw. This was the first time I began to notice I didn’t digest things normally. I was going through an awfully stressful time and I noticed I would either vomit up undigested food (my ED was in recovery at this time) or it would go through my entire digestive system undigested which was extremely painful. Eventually, I got the jaw unlocked and the digestion flare up ended. My now fiancé and I had moved back to our hometown when I experienced a digestive flare again. My gallbladder was found to be even slower, but the general surgeon wanted to do a gastric emptying study to make sure my vomiting wasn’t something else. Well, it was and that was what was causing my gallbladder to slow. I was diagnosed with moderate gastroparesis and began working to control that. That was my first “rare” diagnosis. Now, if you know anything about chronic illness, you may wonder why no one figured out what was going on with me. I have no idea. With fibromyalgia, anxiety, hypothyroidism, gastroparesis, joint hypermobility and instability, TMD, Reynauds, etc. it should have been pretty clear what my symptoms and conditions were pointing to. But it wasn’t caught.
During this time, I found a new primary provider who was beyond amazing. She believed me and even acknowledged that I knew when something was up with my body. Yeah, she’s still my primary and even is the provider for my kids. I absolutely love that woman. However, I never really highlighted all of my issued in one solid conversation. She knew of a few of them, but I never really pushed to figure out my health issues. I knew the puzzle hadn’t been completed, but I was content. Not long after I began to see her, I got pregnant with Sophia. From that point on my main focus became my kids. I sort of let my health issues fall to the wayside. I kept up on the necessary medications (and I mean only the absolutely necessary. I’ve always refused pain meds.) Did anything improve? No. I just had gotten really good at hiding it all. My husband would know when I had a gastroparesis flare up or when my pain was extra bad, but we really didn’t talk about any of that.
Once Henry was born, I started contemplating finding the missing piece that linked all of my chronic issues together. I had watched a few YouTubers with this specific genetic condition that sounded eerily familiar. I decided to look up the diagnosis criteria when Henry was about 2 months old. Well, that search hit me like a ton of bricks. It explained everything from my lack of coordination that was so bad I had coordination testing in kindergarten to my easily bruised skin. I made an appointment with my primary to finally rule it in or out.
Don’t take the above image too literally, as all I had to do was mention I suspected this condition and she immediately pulled up the diagnostic criteria. As she and I went through the list, she looked at me and said, “Well, this is very much you isn’t it.” I had prepared all of my research to show her why I suspected this, but turns out I didn’t need it. Just like she always has, she trusts my knowledge on my own body. She had absolutely no problems putting that diagnosis down as it was so evident this is what I had.
What is this mystery condition that took 20 years to diagnose? Hypermobile Ehlers-Danlos Sydrome; a genetic connective tissue disorder that affects many parts of the body. I don’t believe my heart is affected at least, but I did have an echocardiogram last Friday to be sure. There are heart issues on my mom’s side of the family and since we are currently unaware of which side gave me the hEDS, it was safer to rule it out. If anything changes with those results I’ll let you all know. Now, this diagnosis isn’t going to change my way of life at all. There is literally nothing more I can do aside from what I’ve already been doing. It’s a sucky revelation, but I’ve long since come to terms with the fact this is a forever thing.
How does this affect me as a busy full time working mom of 3? And why on earth do I call myself a zebra? Stress makes my pain worse. The more stressed I get, the more I clench my jaw. The more I clench, the worse my jaw gets and the more headaches it causes. This then affects my sleep which makes my joints more painful. This tends to set off my gastroparesis. Basically, I had to find systems that work for me to attempt to keep my life in check. I probably come across as very type A sometimes because of it. Truth be told, I’m actually very type B. I just have to figure out back up plans for my back up plans because I have become used to my health taking me down for a few days unexpectedly. When I feel like I’ve been run over by a ten ton truck driven by a 50 ton gorilla, I still have kids who rely on me. I have to have my ducks in a row. People ask how I do it. I wasn’t aware I was given the choice. Life goes on whether or not I feel good. And since I haven’t had a pain free day since I was 10 years old, I don’t know any different. I choose to be in control of my body, not let my body’s dysfunction control me. Of course, it means many people are unaware just how impacted I truly am. But that is a trade off I’m willing to take.
Hey, Breann! Why the heck are you a zebra? Well, in the medical world, doctors are taught that if you hear hoofbeats, don’t expect a zebra. It means that look for the most common and obvious answer (aka a horse). However, there are the occasional zebras who do in fact have the conditions considered rare. EDS (there are actually 13 subtypes) is one of these medical zebras. The zebra is often used to represent those of us who have one of the subtypes of EDS. The doctors looked for the horse with me. They just were never going to find it because this was one of the times the hoof beats belonged to a zebra.
Being a mom with a chronic illness is not easy. I don’t get sick days even though sometimes I can barely function. Thankfully, my husband knows if I’m actually mentioning my pain it is beyond bad. I’m lucky to have him be able to take over much of the duties during that time if I can’t function. I hate having to need it. Will my kids get it? I don’t know. There is definitely a possibility and I’ll keep an eye out for it. Thankfully my diagnosis paves the way for any blood relatives to have a much easier time getting a diagnosis of EDS. However, I pray I have a bunch of little horses in my house and I’m the lone zebra.
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