Tag: Surgery

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21. Miracle Baby

“I was given such a great gift. It’s a miracle that never stops amazing me and reminding me to give thanks, every day.”
– Jake owen

With my {miracle baby} turning > s i x < less than a week ago, I can’t help but reflect on how he came to be. Though, if I’m being honest, both of my children are miracle babies. And no, I don’t mean in the whole ‘all babies are God’s miracles” way. I mean, it’s legitimately impressive that they’re here without [complication]!

See, we didn’t know it at the time, but when Igor went for his vasectomy we discovered he only had -one- of his vas deferens. A missing vas is usually associated with renal agenesis (the absence of one or both kidneys) / abnormalities and / or genetic mutations. The urologist said that he had never heard of it otherwise. So, Igor went off to get an ultrasound only to discover that he, too, is a zebra himself! <3

For those not part of the {chronic illness communities}, in medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct, to expect common conditions. The phrase taught to medical students throughout their training is, “When you hear the sound of hooves, think horses, not zebras.” However, many medical professionals seem to forget that “zebras” >DO< exist, so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions, such as myself!! There is {no} explanation for why Igor only had one of his vas deferens, and seeing as the urologist was stumped himself, I declare my hubby a “zebra”, even if only an honorary one.

That said, the fact we didn’t end up with fertility treatments is the first miracle itself! I even got pregnant with Leighton on our first try. Our good friend Matt [Friendships pt. 2] likes to joke that Igor has -supersperm- as a result of Chernobyl. <- Which, may be in poor taste given that Chernobyl is considered the worst nuclear disaster in history… buuuut is it not {also} possible he may be right? ::joking;kindof:: Having Ehlers-Danlos Syndrome [06. HS/Diagnosis], I was at risk for a variety of complications, from not being able to maintain pregnancy or delivering prematurely, to hemorrhaging, especially due to my platelet disorder: Delta Granule Storage Pool Deficiency. According to St. Jude Children’s Research Hospital, DGSPD “is caused by a lack of dense granules and the chemicals normally stored inside them. Without these chemicals, platelets are not activated properly and the injured blood vessel does not constrict to help stop bleeding.” <- basically meaning, I’m a bleeder. I have to be honest and admit that while I knew about EDS {shout out to May being EDS awareness month!}, I didn’t truly understand it when it came to pregnancy, at the time I was pregnant with Leighton. We were concerned about premature labor but my obgyn was much more concerned about my bleeding and the potential need for a hysterectomy due to said bleeding.

As I mentioned in [Twice Exceptional], I had Leighton at 35 weeks+5 days. At 33w3d I was sent for a stress test and discovered I was in preterm labor. I guess I’m so used to pain that I didn’t even realize these were [decent] contractions and not just Braxton Hicks. After a few hours they decided to send me home but to keep an eye on my blood pressure and if contractions started up again to go back. In less than 24 hours I was back in and admitted for the night. We already knew that I was going to be having a c-section under general anesthesia because of my doctors’ fears over bleeding. They didn’t want to give me a spinal and cause more harm, only to have to put me under should there be an issue. The morning of the day he was born, my obgyn was concerned that I was going to end up in an emergency situation. She didn’t want to send me home only for me to come back to a busy ward without platelets on hand. She believed based on how I was progressing that I wouldn’t make it a week, and felt it was the safest, smartest option to deliver him that day, while there were two doctors to oversee it, she would be there (as it was her hospital day), and being morning they had fresh platelets on hand and could reserve them for me. That quickly became the scariest day of my life, up to that point! Like I said, we didn’t know enough back then but you better believe I did my research the second time around, because having a child under general anesthesia, not knowing if I was going to wake up with or without a uterus – or at all, miss the first cry, my husband not being allowed in the room, and so forth, >definitely< lead to birth trauma!! I felt so disconnected from Leighton, and honestly I still do. I don’t know if it’s from the trauma or his neurodivergence. I just know that I love him fiercely, but our bond is nothing like that of which Kellan and I have. Over the years there have been times it felt fake and forced and it breaks my heart to even admit it, but here I am… Telling my truth. The next miracle: being born at 35+5, at 6lbs 11oz – baby boy [never] spent -any- time in the NICU (which is good because he would have been transferred downtown to Detroit Children’s Hospital) and went home with me when I was released!!

Having a 2E child is challenging beyond words! With everything that we went through those first 3 years, we honestly didn’t know if we’d have a second child. We had always talked about having 2 and if they were both boys, we’d adopt a girl. Only in a “perfect” world, right? I shake my head at our naive young selves. It took until hearing the words, “you’re not ovulating” and “you may not be able to get pregnant again”, to realize how badly we actually wanted a second. Knowing that choice was essentially [possibly] taken from me, cut me. Deep.

Huh, just right now I realized, I think that I need to backtrack on my comment about not needing fertility treatment. My [naive] understanding of treatments was always so much more in-depth than just taking medication for ovulation induction (OI). After thinking about the fact that I >did< use oral medication to try and “re-boot” things, I decided to see what actually was considered ‘fertility treatment’. Lo and behold, OI is infact one of the first methods! Wow. You learn something new every day, and I’ll [never] stop learning anything I can. Knowledge is power, my friends! <- Which is why my 9 year old son knows about what is going on with the Supreme Court, at this moment in time. When he found out, his first reaction was to ask, “but what about if the mother’s life is in danger?” Oh my heart, sweet boy. I’m not going to go on a pro-whatever- tangent, I just think it’s incredible while also very sad, that this {child} understands it’s >not< a black and white situation – and he is very much a black and white type of person!

I did two “cycles” and viola, I started ovulating again. Seven months later, I was never happier to see two pink lines! From about 6-8 weeks I had to have regular blood work due to what is medically coded as a “threatened abortion.” <- Because that’s always fun to see on paper when you desperately want that child. And just so we’re clear and there is no misunderstanding, a threatened abortion means :possible miscarriage:. Also during those weeks, I had to use vaginal suppositories daily. I share this because 1) this is my truth and 2) [awareness] as I had -never- heard of anything like it before. I had to get them from a special compound pharmacy, as well. The whole point of my blog is to help others, right? There should be no shame in discussing women’s reproductive health; so ::sorrynotsorry:: if you found that uncomfortable.

It was very evident from the start that I needed to see a [high-risk] ob/gyn, again, only this time my doctor recommended that I head to UofM, completely out of her “network”. Hell I wasn’t going to argue, you want the best of the best, right? Man am I grateful I did!! See, it was at UofM where I discovered that even with my bleeding disorder, hematology cleared me for a VBAC (vaginal birth after cesarean), shall my other doctors agree! Missing Leighton’s birth caused a lot of trauma and I wanted more than anything to have a natural birth! More. Than. Anything! Having an epidural was more of a risk to me due to bleeding, plus it puts you at greater risk for needing an emergency c-section, which would again result in me likely being put under. Nope! I didn’t want to risk any of it so I started practicing hypnobirthing. I had my essential oils picked out, I had my music prepared and had been going through all the prompts with my mother as she was going to be my coach though it. She is my calm, which, duh? Of course she is, she’s my mom!

My team of high-risk OB’s couldn’t give me a definitive answer of course, but they knew it’s what I wanted and it was listed as my birth plan from day one! At 21 weeks I started progesterone shots to help prevent preterm labor, but had to stop after 2 weeks. At this point I hadn’t been diagnosed with PMDD, so I didn’t know that those added doses of progesterone would cause me to spiral downward, fast! That was the first time (that I knew of for certain) where hormonal depression kicked my ass! I mean, I figured I was a mess when taking the pills for OI because it was meant to shake things up, I just didn’t realize they were a contributing factor. Nor did I realize that what I was feeling with the suppositories wasn’t just [normal] “pregnancy hormones” with the added stress of a -possible- miscarriage. Nope, as it turns out, my body doesn’t handle progesterone well. I didn’t discover until after I was diagnosed with PMDD, that natural progesterone levels are at their highest right after ovulation, which is exactly when I start struggling; <- explains a whole lot as to why any time I was on birth control, I also ended up on anti-depressants! So, not being able to take the shots meant more visits and added ultrasounds as once again, I was at a higher risk of losing the pregnancy, not just going into preterm labor. Yay me…

Around 28 weeks baby boy was thriving! He was in the 67th percentile, so it was really up in the air as to if I’d be able to have a VBAC. If he continued to stay far ahead the closer to term that I got, my chances for the natural delivery that I wanted would drop lower and lower. By 34 weeks he had dropped to the 29th percentile, which, in retrospect should have been questioned more, but they viewed him as healthy and my chances looked bright. I only knew he dropped as I started going into preterm labor and had 2 ultrasounds that week alone to monitor him. At 36 weeks with a 5+ hour trip to labor and delivery, they were convinced he was coming that night. After walking the hospital for 2 hours, things weren’t progressing enough so they sent me home, even though my contractions had been consistent for 2 weeks and powerful enough to be considered ‘active labor’ that night… until they stopped. All of a sudden, out of nowhere. <- again, in retrospect one would think there’d be a little more concern but my fluids were intact and all seemed [fine]. Cool? As I mentioned in [15. Twenty-Two] Kellan was almost born on his father -and- my father’s birthday. He was also close to being born on my mother-in-law’s. <- Thankfully he wasn’t, no offense, but if he’s not sharing the day with my husband and my father, Kb deserves his own day just for him! Which he got, when my water broke the very next morning.

When we first got to the hospital everything was progressing as it should. I got hooked up to monitors and was super stoked that the outcome of having a VBAC looked promising! Then… literally out of nowhere like the flip of a switch, nurses came barreling in. I was flipped onto all fours, given oxygen, and my doctor did a quick exam (I think?) as they were wheeling me to the operating room, before Igor or myself could even ask what was happening. Within a matter of seconds I was on the OR table and hooked up to monitors again. I just remember not getting to kiss Igor goodbye as we both had tears in our eyes, without a clue as to why the situation was so emergent. During transport my doctor mentioned that they had [-lost-] fetal heart tones for the last 10 minutes!! <- Are you fucking kidding me?! TEN MINUTES?! Isn’t the >whole< point of being hooked up to monitors in the first place, to assure things like that doesn’t happen? Who the hell wasn’t doing their job monitoring me from the nurses’ stand? 10 minutes? GTFO!

Once lying flat on the OR table and hooked up again, they allowed Igor to enter the room. Adam, one of the senior residents (I don’t know what his official year/title was at the time) sat with me and finally explained what was going on. They didn’t know for sure what happened, but at that time I was stable and baby boy was stable. They weren’t sure if he had moved and went into distress or if I unknowingly moved the monitor not realizing. Whatever the case, it shouldn’t have taken 10 minutes to notice!!! Arg. Anyway, after about 45 minutes of monitoring us he felt comfortable enough to let -me- make the decision on whether or not I wanted to have an elective c-section or return to my room and continue with my original birth plan.

See, what makes or breaks a good doctor is truly their bedside manor. You can be brilliant but if you’re a jerk, your ego will get in the way eventually and it wouldn’t be surprising if you face a lawsuit or two+. Adam listened to me. I explained my previous birth trauma and how important certain things were to me. Like delayed cord cutting, Igor actually being able to cut the cord, skin to skin immediately after birth and most importantly – to be awake and hear his first cry!! He knew how badly I wanted to try laboring naturally and allowed me the [choice] without any pressure (How it should be!). He asked if I wanted to speak with an anesthesiologist first to hear my options shall the need for an emergency cesarean arise. He stood next to me holding my hand while I cried unsure of what to do. Ultimately being awake was [the] most -important- thing so we all agreed that while I wasn’t getting an epidural, pre-placing a catheter in the event I needed to be rushed down again, would give me the best odds at not being put under, as they could pump what was needed during transport. 

They had Igor step out as they placed and tested the catheter for proper placement. They told him it would only be a few minutes so he could go back to my room and wait for me to come back. Only… things didn’t go as planned… AT ALL! Again, within a matter of seconds I was back on my back as they prepared to get Kb out of me as quickly as possible. When they tested the placement his heart rate went from 187 to 58 almost instantly. Adam had previously addressed how important it was for me to be awake with all of those involved, so the nurse anesthetist told me that they’re doing everything they can, but to understand that in order to stay awake they needed to overdose me to work as quickly as possible. Pretty sure all I did was blink and I went from having fluid dripping into my spine to, “Jena can you feel that?” “Prepare for the baby to be out in 90 seconds.” I remember yelling, “Wait, what?! Where’s my husband? My husband has to be here; he can’t miss this! Where is my husband?” as tears streamed down my face. Everything happened so fast that Igor entered the operating room {JUST} as they were pulling Kellan out of me. Igor thought fast on his feet and grabbed his camera when whoever went to get him and started taking pictures as the OR doors opened. The first thing he saw was baby boy literally halfway out of me! ::phew:: He just kept snapping, I don’t even know if he was looking through the viewfinder or just holding it while he pressed the button but he at least got to see it… kind of.

Unfortunately delayed cord cutting wasn’t an option, however Adam made sure to leave it long enough to get [some] benefit as well as allowing Igor to “cut the cord”. My sweet baby came out blue; I of course didn’t know this at the time but it sure seemed like it took forever to hear his first little high pitched cry! He was whisked away to be checked over and then brought over to me and placed on my chest right there in the OR for immediate skin to skin! I am not sure how normal that is, as I’ve only ever seen photos of proud dads holding a wrapped baby next to Mama’s head. The problem is, I was legitimately numb to my neck and he kept rooting upwards towards my shoulders. They weren’t kidding when they said they needed to overdose me. The nurse had to keep adjusting him until he finally found what he wanted and started nursing.::awwmybebe:: And nursing did he ever! Pretty sure I made cream as he was already above birth weight at his first doctor’s appointment. They typically say by 2 weeks babies should have reached their birth weight as they lose weight while in the hospital. He weighed 5lbs 15oz at birth, left the hospital at 5lbs 7oz and was 6lbs 2oz by 5 days old!! ::whaaat?!::

Remember when I said he had dropped from the 67th percentile at 28 weeks to the 29th at 34 weeks? At 38w5d he was born barely making the 2nd percentile. Later that night after walking the halls, I returned to my room to find the MFM attending doctor waiting for me. He explained that had I attempted natural laboring, both myself and Kellan may not have made it. If you recall in [06. HS/Diagnosis] I explained how EDS affects the organs, as it’s a connective tissue defect. As it turns out, all of the complications and near miscarriages were a result of a faulty placenta. I was never actually told what exactly was faulty about it but that he was malnourished towards the end of my pregnancy. He was healthy, but it makes sense why he ate around the clock for a while. My uterus was so thin along my previous cesarean scar that it basically ruptured on its own as surgery was being performed. <- Whoa! That explains why the OR looked like a crime scene in the pictures… ::ShiftsEyesSidetoSide:: I was in a controlled environment and they were prepared, whereas if I tried laboring, there is no question that I would have hemorrhaged and it would have been that much more serious. Obviously doctors cannot [tell] you what you can and cannot do, but he made it -very- clear that getting pregnant again would put my life even more at risk. He told me that if I was his daughter he’d tell me, “it’s not worth it and to not get pregnant again!” Roger that!

Adam, or rather now, Dr. Baruch, clinical assistant professor, will >always< hold a special place in my heart!! I know I didn’t go into detail over just how much he was there for me but I will never forget him! He even came to check on me after his shift had ended and he heard what the attending had to say. I am not the person to walk up to someone off the street and say something, however, about 18 months later I apparently became that person. Ha. Igor and I were in downtown Ann Arbor and saw Adam in a store. I was so SO nervous and hesitant but I -knew- that I [had] to say something; I not only literally survived because of him, but I also survived a very traumatic experience without the mental trauma effects. I have tears in my eyes just thinking about his sincerity and how lucky future mamas will be, to be under his care! Also, you know you’re getting older when the doctor who performs surgery is younger than you. Oy.

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09. First Love


“if you will think back of your first love, you will for sure remember a lot of great LITTLE things that will bring so much happiness in you” – Naya River

As I mentioned briefly before, I fell into that 1% of patients who would end up needing a repeat surgery on my knees. Ironically, my physical therapist after my car accident (we’ll get to that…) also fell into that one percent and her birthday was the day after mine! This surgery took place during the summer before my junior year. I had already been having undiagnosed autonomic dysfunction for months but everything amplified to the max after that surgery. My body was in it’s own storm of chaos. 

It was weeks after this surgery that my high school sweetheart and I broke up. Again. No it wasn’t the first time and it wasn’t the last, but it was the beginning of the end. Mind you, he was with me during that surgery – waited with my parents – and was the first one I saw in recovery. He was more than just my boyfriend, he was truly my best friend and had been for years. He had been my rock and the one consistent thing in my life while everything else flipped upside down. The heartbreak from that breakup was beyond shattering. It felt as though I lost a part of my own soul. I was already broken, but it was then that I knew nothing would ever be the same. And it hasn’t.

I have to be honest and say that the thought of going into detail about this relationship makes me wanna throw up. It would be fair to say that my anxiety is off the charts. One, because of how much Kevin meant to me for so long, but also because I don’t want to hurt my husband. I might say/word some things in a way that he may not understand and I fear he might take them the wrong way. However, this is my truth; I will do my best to stay authentic while also respecting Igor’s feelings. I apologize now, babe, if you are hurt in any way!! Please know this was never my intention!

Fahhhh… 

First let me just preface this and thank C.M. Stunich for writing H.A.V.O.C.; it has allowed me to better understand and accept that you can absolutely still love your “first love” while also loving your husband. It may be fiction but it definitely rings true in my heart; and while the following is also fictional, I think what Helen tells Tyler in Sweet Magnolias about first loves, accurately and beautifully sums it up.
“You let them into your heart to whatever degree, that leaves a mark – forever. The people we love first, maybe even before we fully know what it means to be loved, they’re with us from that day forward… and even when you try not to, you measure every person who comes after them against them. So I try to be grateful for what that person taught me about the world and about myself. But not let remembering the first keep me from seeing the next as the… completely unique and utterly marvelous… person they may be.”
^ – I’ve >ALWAYS< said that once you love someone, you’ll always love them – just differently. 

Okay… Kev and I met in elementary school, living 8 houses down from one another. He was a year ahead of me and his brother was a year behind. I ended up becoming good friends with his brother first, strangely enough. I would even go as far to say that I considered him a best friend at one point. I think back to those days and just laugh. I don’t know how or why but the big baggy “MC Hammer” pants were definitely a thing, though being a late 80’s child when I saw Kevin in his baggy pants, all I saw was Aladdin. Ha, ha. Oh the innocence of an 8 year old.

By 6th grade, you know having already.. [blossomed],  I was definitely noticed and receiving attention. I went through so many “boyfriends” in middle school it’s actually humorous to think about. However, I only wanted the attention of one boy – and in 7th grade that wish came true. One day after getting off the bus I was handed a note. Trying to stay cool and hide my fluttering butterflies I waited until I was home to read it. [Notes kind of became our thing for the next 4-5 years and I still have a box of them at my mother’s because I just couldn’t part with them.] That first note expressed his feelings for me and I about died inside. The next few notes, after explaining my shared feelings, were about how much he wanted to make sure he got good grades on his report card so that he could prove that he was responsible enough to have a girlfriend while still taking school and extracurriculars seriously. Then, in November of 2000 I officially became Kevin’s first girlfriend. But you see, we still had to keep it hush as he didn’t want his friends giving him a hard time for dating a [7th grader.] <- Damn girl, where was your self respect? Then, after a few short months he ended things without giving any reason. His brother told me it was because he was embarrassed and didn’t like getting a hard time from his friends. Fk you middle school peer-pressure! But, the notes started up again because he was like a moth to a flame; he couldn’t stay away. At first it was just platonic but obviously that didn’t last. We got back together only for my heart to be ripped out mid summer. Again.

About a month later I was at the local bowling alley for what they called, “Rock’n Bowl”. It was this glow bowling thing they put on for younger teens/tweens. I was with my ever so pushy best friend and she insistently dared me to kiss this boy in the lane next to us, who had been flirting with me all night. I was too chicken shit but between Jessie and his friends, it happened. Kevin, who? Hi, meet Roth. Roth had actually just started working at the skatin’ rink that I just so happened to frequent. It didn’t take long until he asked me out and I accepted. He was the first boy to ever buy me flowers (a dozen red roses for Sweetest Day) just a few short weeks after we started dating. I really cared for Roth but I always kept him at arm’s length because deep down my heart was always Kevin’s. We were together for a little over 6 months and shared “I love yous”. Did I really love him? I don’t know. At the time I sure probably thought so but I also didn’t really understand love. So yes, I’d say I did love him for what I thought/knew love to be at the time. Like I said, I did really care for him and had feelings for him (that whole once you love someone, you always love them kind of thing) for a couple years after we broke up. It took some time but after a few months we were able to be friends again and he was actually my date to my first Homecoming dance, freshman year. He wanted to get back together but I wasn’t interested. I was over boys breaking my heart..

Oh did Kevin hate Roth and vice versa. After Roth and I broke up, Kev and I started “talking” again. Damn flame and lack of self respect. LOL. No, this time I wasn’t letting myself get close enough to allow him to hurt me again. But, he was my best friend and we talked all the time. He pined over me all of my freshman year and I probably took advantage of it. Maybe unconscious revenge? Idk. I’d flirt with him and Roth and whoever else, really. Heck, on the 3rd day of school in 9th grade I made out with a guy named Christopher on the bus. Never met him before that day and our relationship was over before it began. He too pined over me and I probably took advantage of that as well. My mother really cared for Chris even though we were only friends at the time. Those 3 boys wanted my attention and fought each other for it. Not physically but definitely verbally trying to assert their claim for Alpha. Unfortunately for them, my attention lied elsewhere.

I had caught the eye of someone… a bit older; let’s call him Beau. See what I did there? Cheesy puns for days. It’s alright not to laugh, I’m ok with being my only fan. 😉 Alright, moving on, Beau was a manager at the rink and I had known him for a few years as an acquaintance. His sister kind of took me under her wing as a big sister/little sister when Lauren and I were up at the rink all the time in elementary school for her brother’s hockey practice/games. It was actually Beau’s younger brother that I crushed on haaarrd at first, but as did everyone else. The kid was very attractive! Being 5 ½ years older, Beau didn’t initiate anything at first, buuut I made it difficult for him not to. My bad. 

Uh, WAIT! – Yes technically I was ‘jailbait’ but I can honestly (without crossing my fingers) say that nothing R-rated happened between us until I was 17, just a few weeks shy of 18, nearly 4 years after we first started “talking.” We were basically just casually dating whenever I wasn’t in a relationship {aka whenever Kevin and I were on a break} for the next 4 years. He genuinely looked out for me and definitely let me know when he felt I was making wrong choices, almost like an older brother? at times. Except I fell in love at one point. Stupid girl!! No, I know that Beau loved me back but everything was just so complicated given the age difference and the different dynamics of our relationship that we never actually gave our relationship a fair chance. Plus, after we first kissed I realized how much of a mistake it was after my honesty left more heartache in its wake. 

You see, Kevin and I were hanging out a lot more at the end of my 9th grade year and that summer before 10th. We even officially shared our first kiss that summer. <3 First loves, man, let me tell ya! I remember that first kiss, as well as the first kiss once we were officially back together… and because I remember everything I even actually remember our last. Weird. Anywho – that summer was also the summer that Beau and I shared our first kiss. The mistake that led to heartache. 

I thought I was doing the right thing by being honest and telling Kevin what had happened. Apparently not because he was so hurt and angry that he wouldn’t talk to me for like 2 months. To go from talking literally every day to nothing, I was lost. Hurt. Confused. Angry. Heartbroken. Even though I was utterly head-over-heels in love with Kevin, I was more hurt over not having my best friend. Over knowing that I hurt him, while adding one more guy for him to hate. Though, once again, I received a note asking to talk after school. That talk happened on my front porch and ended with us officially getting back together. [That second ‘first kiss’ happened right then and there.] 

Ohhhhh the feels. As I type this I can literally feel what I felt during all of this. My chest is tight, my tummy is fluttering, I can barely catch my breath. Yeah, being an Empath is hard, I don’t recommend it!

We’ll come back to Kevin later… ::Pushes feelings away::

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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?

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05. Middle School

“If it doesn’t challenge you, it won’t change you.” – Fred Devito


Middle school… bloody hell it sucked. Who’s idea was it to throw together a bunch of new students who never met one another, during the most awkward years of adolescence?  Don’t get me wrong, I fully agree that the age range needs to be seperated from elementary and high school – but damn. [Un]luckily for me, I got to experience the wonderful awkwardness twice as our school district did boundary changes after my first year.

[Thanks] to starting puberty so young, by 6th grade my breasts were a full 32C. At the expense of sounding narcissistic, with breasts like that and my looks… It’s no surprise I quickly found myself amongst the popular crowd. However, after the boundary change tables quickly turned. Of the five middle schools in the district, just one housed not only the neuro-typical students, but also the “talented and gifted” aka honors students, as well as all of the special needs/ nonneuro-typical (neurodivergent); mine. When the boundaries were redistricted only a quarter of the original students remained at my middle school. Being that it was home to the TAG program and the special education department, it doesn’t take a math wiz to figure out that of the 25% of students that remained – only a sliver were the original Average Joes. That being said, the new 75% of students all came from the same school and most of them had been together ever since elementary. Their pre-formed “cliques” took over. Initially I got along with everyone, of course that only lasted until I started dating a guy that one of the new popular girls had her eyes on.

I am telling you, girls are caddy. We’re downright bitches. Overnight the name calling and bullying began. Aside from kissing, I was essentially a “prude” in comparison to the other girls. I was a flirt and kissed, well, anyone, but never took it farther than that until I was nearly 16 and in a committed, head over heels, deeply in love relationship. And yet, I was somehow the whore? Though I suppose it didn’t help that it had gotten out that I was on birth-control. Nevermind the major detail that it was medically necessary. No, to 13 year olds it was all about sex. Not only were my migraines getting worse, particularly during that time of the month, my periods were so erratic and horrific. I managed the best I could and held off hormonal intervention as long as possible. Then the ovarian cysts started. It only took one rupture to change mine and my parent’s minds. And to think, I thought that was the worst pain I’d ever endure. [I shake my head at naive, young Jena.]

Good ol’ B.C. Between the pill and anti-psychotic drugs for my migraines – I gained weight. I went from a 1/3 in 6th grade to a size 9/11 by the end of 8th. The crazy thing though is I wasn’t “fat”, I didn’t look my size! I didn’t weigh what you’d expect someone wearing a 9/11 to weigh. Not that I shared my size (because let’s be real, that’s just asking for it at that age) no one believed me when I told them. Even my doctors were baffled. I literally weigh more now and am a size 4/6 (27/28) at the same height. The only thing that was noticeable was my puffy face.  Sooo… we chalked it up to water retention and underactive thyroid.

We didn’t know the cause then, but I had what my mother referred to as “sausage” skin. It’d look like red veins spidering out everywhere, like raw sausage. And prior to the weight gain I developed stretch marks. Yes, PRIOR! I was a size zero when they first started to develop. They appeared in random places, too, like my ankles. The breasts I understand, but my shins and ankles? What?! Even weider, it wasn’t during a growth spurt. They literally started appearing overnight! I kid you not – I am a roadmap of faded stretch marks from my waist to my ankles. Hips, butt, thighs, calves, behind the knees – nothing has been spared. I even have a small rainbow on my lower back (just above my butt), rings around my belly button and upper arms. Yet, ironically I didn’t get a single new stretch mark during my pregnancies. I have slowly learned to accept my lines, though what I struggle with and probably always will is the loose baggy skin they caused. If it was just a “mom pouch” I’d eventually get over it (I mean I did finally wear a 2 piece bathing suit in public 3 years after my oldest was born)… but it’s not just the pouch, that’s actually the least of my issues. It’s my legs. Barf!

As I sit here writing, I think I just realized why my legs being as grotesque as they are, weighs so heavily on my self-image. My sausage skin and bright purple stretch marks were just another excuse to bully me. The harsh truth is that stretch marks are associated with heavier people, outside of pregnancy. So even though I developed them while still [thin] – the fact that I did gain some weight gave my new frenemies their best material. I think my favorite was being “moo”ed at. Very original. I feel as though I need to include a photo of myself during this time so you can see how pathetic kids can be. If they were mooing at me, my heart breaks for anyone dealing with weight issues and bullies! I wasn’t even ‘overweight’ and the psychological trauma of being made to believe I was, affects me still today.

I still don’t understand how I can go from being so “popular” to a social pariah in such a short time! I had plenty of friends who were older and at different schools, but at my own school, by 8th grade things had gotten so bad that I got permission and switched to 7th grade lunch to be with my best friend.

Yeah, adolescents are assholes…

With everything that was going on in my social life, which at 14 is essentially everything, it’s not a shock that I’d begin dealing with some depression. Unfortunately, over the next few years that is all doctors would see. They blamed all of my symptoms on either depression, psychological, ie: all in my head, or I was making it up. Aside from my pediatrician, who I absolutely loved and appreciated beyond words, I was not taken seriously. As a patient it sucks! You don’t understand how they can’t believe you. But at the same time, when someone hands you a sheet of notebook paper filled with symptoms spanning from every one of the body’s systems… I can see where it’s hard to take it seriously. Especially when doctors are told to think of horses when they hear hooves. Having any illness blows. Having an invisible illness is worse, add to that one that is rare, plus a few that aren’t as rare but rarely heard of… atrocious!

Anyway, 8th grade was a pivotal point in my life not only socially and academically, but as well as my health. I started getting hit with bouts of extreme fatigue. Before you go there, yes, I do know that it is a tell-tale sign of depression, and no, it didn’t help my case. The thing of it is, these bouts didn’t last long and were infrequent… until I had knee surgery.

My knees had always bothered me but they started to get increasingly worse at the speed of light. In the fall of my 8th grade year I had to make the difficult decision to stop dancing, something I once loved more than anything. By spring break, I had bi-lateral arthroscopic knee surgery to remove scarred synovial tissue (plica) as it was putting pressure on my bones and flattening my meniscus’. Surgery went off without a hitch, I didn’t need physical therapy and actually grew over an inch that following summer (it was previously stated I was done growing.) I was even told there was only a ONE percent chance I’d need the surgery again and that in the surgeon’s 30+ some years he’d only done repeat surgery for this 5 times. Outlook was promising. Until of course 2 years later when I fell into that one percent and needed repeat surgery.