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.
My girls are still pretty young so they would never know if their birthdays passed and we didn’t do anything. They also wouldn’t notice if their party didn’t have a theme or any decorations. So why bother? My husband even thinks I’m a little kooky for putting so much effort into parties for kids under the age of 5. I planned Sophia’s first birthday party before she had even reached 8 months. Her first and second birthdays were Sofia the First and Tea Party. The only year we didn’t do something with a fun theme was last year due to COVID, but we still had some simple dollar store Princess decorations. That was Nina’s first birthday unfortunately, so she hasn’t had many themed parties yet. But I digress. Why do I get so into these parties?
My parents did give us birthday parties every year for family and friends, so I definitely didn’t go without. Hubby Stanzell (HS) got birthday parties where his grandma hung a birthday banner and his mom homemade the cake. However, neither of us had the cutesy themed birthdays. HS couldn’t have cared less. I always loved looking at the magazines with party supplies dreaming of some themed event. I suppose it shouldn’t have come as a shock to anyone that I ended up pursuing a degree in theatre and writing a book. Admittedly, I may be living vicariously a bit by doing these, but at the end of the day, my kids ENJOY getting this little thing I had always wanted. It’s a good outlet for me. We really don’t do much for toys and asked others to do the same. Therefore, I think it only makes sense we put the effort into the experience. As I always tell the kids, it’s about the others’ presence not their presents. Plus, they get to feel really special for that brief space in time. That will make a more lasting impression than the most expensive gift any day.
Being the girls’ birthdays are 3 weeks apart in June and July, they will never get to celebrate during school time. They are also going to likely share a party until the day they specifically request not to. Our summers in Minnesota are so short; why not throw a big get together for the two of them to get the maximum amount of fun? Sophia starts preschool this fall, so next year we could be inviting school friends, but as of now it’s church friends, neighbors, family friends, and family. Around March every year, I start thinking about what I want to do for their party. I have the invitations out the beginning of June typically even though I throw the party in early July between their birthdays. Figuring out how to make a memorable experience for my kids gives me a thrill wedding planning or planning events for myself never did. This year, I talked to my girls about what kind of theme they wanted. When they became deadlocked on mermaids or unicorns, I decided to just do both. When I found the amazing banner on Amazon, I knew it was meant to be.
This is where the fun came in. I began to look for anything and everything that could go with the theme. I found invitations that had a mermaid tail on a unicorn. Pinterest became my go to for snacks. Not to brag, but I think I did pretty well: unicorn horn chips (bugles), homemade unicorn popcorn (popcorn with candy melt and sprinkles), salt water taffy, goldfish crackers, homemade mermaid ice cream, and rainbow fruit and veggies. I also served a few different colors of Hawaiian Punch. The decorations looked way more expensive than they were. Most things were from the dollar store or were under $5 from Walmart. I used some craft supplies from the dollar store to create personalized unicorns with the girls’ names and birthdates as well as mini canvases with their theme of choice. Nina had everything mermaid and Sophia had everything unicorn although both do like both. I also made a bunch of melt and pour soap as party favors for the guests. Sophia had a blast helping with this one nap time. HS cleaned the garage which he uses as a wood working shop in the summer and I got to work. Even though I had spent the day prior to the party deep cleaning my house, I got up early the day of the party to set up. I wanted to beat the heat and not be rushed. HS thought it was a bit much, but I transformed the garage into a magical paradise for our girls.
The party started at four so Nina could still have her nap. At 3 o’clock, I got her up and got the girls dressed in frilly skirts and custom mermaid unicorn tshirts. They LOVE matching so this was an exciting moment for them. I also got the cakes out of the fridge to start acclimating to warmer temps before I would eventually bring them out to the 85 degree party space. At 3:30, all of the food minus the cakes were brought out. The soaps were too , but I think next year I’ll wait on that. They ended up melting a bit on the table from the heat. Not that anyone cared, especially since some where still under the table and the guests went home filthy. More on that in a bit. We also took this time to give the kids their big present from us as their Daddy was setting it up in the back yard. The kids now have an awesome wooden playhouse to call their own. Along with an inflatable pool, trampoline, swing set, and mini basketball hoop, our backyard is a kids’ summer adventure zone. This is why I never plan games or activities. I just let the kids loose in the backyard. And I can assure you this has never failed yet. At 4, the guests began to arrive and the party began.
They didn’t have to wait long to get their first present from a guest. When their “Uncle Eric” came (HS’s best friend), he immediately put up their new ladder for the trampoline so they could get on by themselves. He had been on HS for months to do something. Apparently, he didn’t want to wait any longer and just got the kids’ one himself. This was an excellent thing as at one point 6 or 7 little girls between the ages of 2 and 7 were on the trampoline at the same time. Most of the little boys chose to play in the dirt. I’m not even a little bit kidding. So many people they care about came to celebrate. Sophia’s best friend was sick, but her mom (my best friend) and one of her younger sisters (Nina’s best friend) still came and surprised them. Unfortunately there were a few people who had prior engagements or had come down with an illness, but I can honestly say I was so pleased with the turnout. The “piece de resistance “ was when I brought out the 2 custom cakes. My friend, Taylor, is a very talented cake decorator. I had arranged to pay her for 2 cakes made to the girls’ requests. A chocolate cake with raspberries decorated like a unicorn for Sophia and a vanilla with Bavarian cream dyed blue (Nina wanted a blue cake) decorated with chocolate sea creatures and mermaid tails for Nina. These cakes tasted even better than they looked. In all of the years I’ve known “Uncle Eric”, I’ve never seen him eat cake. He doesn’t like sweets much. However, he had multiple pieces that day. The girls were pleasantly surprised to have gotten many gifts themed to their party including clothing, water bottles, umbrellas, and books. Below is a brief overview of some of the amazing nontoy gifts they received.
I was beyond glad at the lack of toys. Sure, there were a couple, but nothing big. My girls have very different present opening methods. Sophia opens them as fast as she can, throwing the previous gift to the ground in order to open the next. I’m not even sure she knew what half of the items were. She certainly didn’t open the cards. I still don’t know who all of the gifts were from. Nina on the other hand, opened her first gift which was a little mini Anna doll from Frozen and showed very little interest in opening anything else. We got a look when she opened Princess goldfish crackers since she loves those, but she was too in love with her Anna. She even fell asleep with it clutched in her hands. Unfortunately the very next day, her Anna doll disappeared without a trace at church so Momma had to go get a new one. We learned a valuable lesson in watching our things and how material possessions are temporary. Did her devastated two year old mind comprehend that? Probably not. But her sister’s did. Might as well turn negative experiences into a lesson.
At the end of the day, everyone had a great time. There was so much laughter from children which is the best sound in the world. Even HS talked about how much he enjoyed seeing so many kids have so much fun. It’s easy to go to bed happy when you just had a bunch of smiling, tired, and dirty children leave your house. Throwing themed parties may not be for everyone. But it is good for my momma soul. I’m already thinking about Henry’s first birthday which isn’t even until February.