06. High School/Diagnosis

“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” — Unknown

Bring on high school! Starting my freshman year we had three, yes 3, high schools on one campus (4 buildings in all) and we had classes in all three schools. You were assigned a “home” school in which your locker would be, where you’d play sports for and graduate from. If you were fortunate enough to have time to use your locker, seeing your counselor could have been the only time you’d even enter your “home” school. I went to Salem but one semester I didn’t have a single class there! It’s nuts. They call it an Educational Park, but in reality it’s a small college campus for teenagers. In retrospect it’s smart because certain elective courses are only offered in certain schools, so they don’t need multiple teachers teaching the same thing throughout the district. But having only 10 minutes to get from one corner of one school to the farthest corner of another, makes for an exhausting day going back and forth between classes! There is no [break]… it would wear anyone down, but especially someone already battling extreme fatigue.

By mid-semester I had become full blown lethargic and negative mono test after negative mono test left nearly everyone calling me lazy and depressed to the 90th degree. With the help of a note from my orthopedic surgeon I was able to get out of running in gym class, but unfortunately my absences and doctor’s notes didn’t help me for swimming and I failed half the semester. Such a confidence boost, let me tell ya!

By the end of freshman year I was starting to do better and tried out for the Cheer Team: GO ROCKS! After having to give up dance, cheerleading became my love. I was so powerful and strong that I quickly became main base. I was determined to succeed and my team nickname was: “Miss Powerhouse.” Unfortunately, being a base leaves you open to getting kicked in the head by your flyer, resulting in a sprained neck. 

That sprain changed everything!    –

The trauma my body experienced triggered a response within my autonomic nervous system that would influence the rest of my life.  Remember the pneumonia I had when I was six and all the fevers with extreme growing pains? That goes with this, as do the mysterious stretch marks and migraines… I have Ehlers Danlos Syndrome, an autosomal dominant genetic condition that affects my connective tissue supporting my skin, bones, blood vessels and many other organs. If it wasn’t for that sprained neck and what followed, who knows how old I would have been when I found out. Secondary to EDS, I have Dysautonomia – an umbrella term used to describe the dysfunction of the autonomic nervous system. The autonomic nervous system is what controls everything your body does without your thinking, ie: breathing, heart rate, blood pressure, digestion, ect. 

There is no way to say with 100% certainty, however it is believed that the pneumonia triggered me to develop a mild form of Dysautonomia, hence the inability to regulate my temperature. Then with puberty, the migraines and extreme fatigue. However, it wasn’t until after spraining my neck did things go downhill fast. I started passing out and blacking out left and right. I developed tachycardia and palpitations with plummeting blood pressure. Fatigue to the point I can only describe as sleep comas. Dangerously low blood sugar and drastic weight fluctuations; we’re talking losing 25lbs in 2 weeks and gaining 50lbs back 2 weeks later! I was getting winded just talking let alone walking. I was in literal Hell!

Doctor after doctor, test after test – I was left without answers, suffering, because you know… “depression”. Not only was my health suffering but so was my social life. I had to quit the Cheer team letting everyone down just weeks before regionals. My pediatrician; the only doctor on my side doing everything she could, very bluntly told me that I must step back if I wanted to survive to regionals. I had no answers from “specialists” and she was genuinely scared for me…

Now, I’m sure you can imagine how that betrayal to my team ended. All of my so-called [friends] were now shunning me. Instead of worrying for my well being, in true stereotypical high school cheerleading fashion, the squad was more important than anything and I was now an outsider. However, the good thing about going to school with SO many kids (6,000+), is that while there were cliques and groups of friends, there were entirely way too many for the standard “cliques” and I wasn’t left completely alone. None of my best friends were on the team and my boyfriend was a star basketball player for a rival team/school.

As time went on I only got sicker and lost my friends because they didn’t understand. They were in HS, a time for fun – not to be tied back with a sick friend. My boyfriend’s family felt my health was too serious of an issue; they didn’t want me holding him back and we eventually broke up. I missed so much school it’s a wonder my mom wasn’t served papers! By mid-junior year I was homebound and school consisted of independent work and a weekly visit from the district’s homebound teacher. But you see, the problem with homebound schooling is that I was only allowed one credit a semester instead of the traditional three. So not only did I have to deal with being sick with a mysterious illness, loss of my friends and boyfriend, having a teacher stage an in class intervention accusing me of an eating disorder (when I lost all that weight so quickly) and another teacher literally talking bad about me (belittling and making fun of the situation to the class in my absence), I had to do school from home only to not be able to graduate on time even though I had a 3.6 G.P.A. 

In May of that year I ended up going to the Mayo Clinic in Minnesota. Mayo is a nonprofit American academic medical center focused on integrated health care, education, and research. It is one of the leading diagnostic hospitals in the world and I spent over a week there on my first visit. 

Random fun facts: My great uncle, Dr. Arnold Kadish, used to work at Mayo and it’s rumored that he dated, possibly was even engaged at one point, to one of the founder’s daughters. Arnold also invented the first diabetic insulin pump in 1963!

While at Mayo they put you through the ringer with test after test, more in depth than ever before. It was there that I was finally diagnosed with the previously mentioned Ehlers Danlos Syndrome and Dysautonomia. During my first visit I didn’t qualify for an official diagnosis for P.O.T.S. – Postural Orthostatic Tachycardia Syndrome but I was treated as though I did. In order to get an [official] diagnosis my heart rate needed to jump 30 bpm upon standing and mine only went 28. Medical logistics are ridiculous sometimes but I was officially diagnosed 20 months later at my second visit. Prior to Mayo, I was diagnosed with Hashimoto’s Thyroid disease at 15, Fibromialgia (which Mayo ruled out and changed the diagnosis to EDS), Sports Asthma (which was also ruled out, turns out that because of the EDS causing blood pooling, I get pooling in my lungs which makes it difficult to breathe.), and any psychological issues in question were found to be completely normal given all of the stress I had been under!!!

FINALLY some answers and validation. Some…

I ended up [dropping out] senior year. And by dropping out I mean I was essentially kicked out. I even tried summer school to catch up but they made it impossible. So, I made the gut wrenching decision to get my GED, but in order to do so before my class had graduated I needed someone from the HS to sign off. It was impossible to get an appointment with the principal and everyone else we tired meeting with said they weren’t authorized to do so. We ended up going straight to the principal’s office where of course his secretary told us he was unavailable. Shortly after she said that he started to walk out of his office and we asked if we could speak to him. He told us he was on his way to a meeting and to schedule something with his secretary. Of course. My friend Jessie was with us and while she may be tiny, she sure is mighty! She used her sass, politely – but direct – and convinced him to give us three minutes, just enough time to sign off on my early GED slip.

Here’s the kicker, he had zero idea who I was or what I had been dealing with. All of these school administration meetings over the past four years, not once was he filled in. WTF?!! He could not believe the way his staff had treated me and handled my case. He ended up having his secretary cancel his meeting so that he could get more detailed information from us. Without any hesitation he signed my slip and even made sure that my official record didn’t say that I was a “drop out”. Instead, he wrote that I was [transfering] and that I was continuing my education at the local community college where I was getting my GED. He apologized on behalf of his staff and wanted to assure that I still had some dignity. 

Having to get my GED sucked, but I kicked that test’s ASS and all of my scores were in the 90th+ percentiles! What made the situation suck a little less is that I technically started college early. Silver lining?