Category: Dysautonomia

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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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Friendships pt. 2

“Adult friendships are hard. Everyone is busy and life happens. I’ve learned you gotta text people when you’re thinking of them. A simple ‘Thinking of you, hope all is well’ really goes a long way.”
-Rob Lowe

After Highschool most noteworthy:

Kelly: My GFFAE – girlfriend for ever and ever! Have you ever had someone in your life who was kind of your air, you needed them in order to actually breathe? That was Kelly. We actually met back in early elementary school when our brothers were in boy scouts together, like with Lauren [02. Dad & 11. Childhood Friends+]. We were friends but were never really good friends until after graduating. She came to my grad party – yes, I still had a party for my GED [06. High School/Diagnosis]- and we just kind of became inseparable from that point forward. Kelly is more than just a friend, she is like an extension of myself. A soulmate on a different plane of friendship. I don’t know how else to explain it, honestly. She just gets me. Kind of like how Marion is my [10. Twin Flame], Kelly is just a part of me. We both had other friends but her friends quickly became my friends as we were all basically together 24/7 for like 2 years. Kelly’s house became another home in a way, I came and went whenever. I’m honestly having trouble putting into words what our friendship was(is?). Bottom line, we were/are family! Update: Life, life happened. We don’t talk often these days however when we do, it’s as though >nothing< ever changed and no time has passed at all. Same for when she sees my mom, or I her’s. We’re just connected.

My mom comes up with nicknames for everyone, and I mean -every- one of my friends, as well as myself. I am Jeniqua and Kelly is Keliqua. I’ve mentioned that Lauren is Lori Lou, Marion is Mary Kathrynn, and Jessie was Jiz, not realizing what she was saying at first but it just became a running joke… ::facepalm:: And of course Igor became Ivan from one of Mom’s favorite vocalists, Ivan Rebroff. I always thought it was because they’re both Russian, but I just learned while looking up how to spell his name that Ivan Rebroff was actually German!?? ::mindblown::

—–Funny random fact I just thought about- I call Kellan (my youngest) “Bello” or “kB” which came from Kelly-Belly [thanks, Mom], which is originally from Kellan-Bellan turned Bello. Kelly is also KB, which I guess makes her the OGKB. With that said, I now declare her *OGKBGFFAE* bahaha. Nothing to see here, moving on—-

Hannah: Hannah and I met via the online support group through Dysautonomia Youth Network of America. While at the Mayo Clinic Dr. Fischer introduced me to this website where I could connect with other kids/teens with Dysautonomia [06. HS/Diagnosis]. Fastforward 3.5 years later and viola – Hannah appears! Hannah is almost 3 years younger than me, but I look up to her – figuratively AND literally. My poor kids get their stature from their Mama. Ha, ha. Hannah has always been so mature and wise beyond her years that everyone forgets she’s as young as she is (or was? I’ve known her since she had just turned 18). Having Dysautonomia herself, she gets what it’s like to need to cancel last minute without ever holding a grudge. She gets what it’s like when you can’t do anything but sit on the couch while you visit. While she may not be a mother herself, she gets what it’s like to need a break. After Leighton (my oldest) was born, she came over regularly (I almost think it was weekly for a while at first?) to help me out and continued visiting regularly until she took a nursing job at OSU a couple years later. Her friendship is loyal, pure and unconditional; as is her love for my children and the special bond she has with Leighton! Update: Stupid pandemic! Being a nurse in basically a step down ICU during a pandemic changes everything. ::cries:: Don’t get me wrong, she is still very much a part of my life even if we don’t talk as often as we once did. She’s tired. I’m tired. She has her own health to care for and I have mine. Things may not be what they once were but they’ll always be!! I know that no matter what, she’d drop everything to do everything in her power to be there for me if I needed her. Like I said, loyal and unconditional! She was the first person I ever met who also has Dysautonomia (I was going to make an inappropriate joke about being the first, but… I’ll pass by it.) Her friendship has meant more to me than I could possibly explain because she just, [gets it]…

Ashleigh: Ashleigh and I met while I was working towards becoming a CMA,AAMA [12. Life Detour]. Spending hours in labs together we quickly became friends, and I honestly don’t know how I would have finished school without her!! She looked out for me and made sure my health was a priority in clinicals. She was my person as I finished college and sitting next to her during commencements (being my one and only time in a cap and gown) will >always< hold a special place in my heart!!! She’s your firecracker, stereotypical “redheaded” woman and I’d never want her any other way! Between her vocabulary and voice decibel it became a running joke at how often she’d apologize to Igor. Ha, ha. It was so important to her that I stand up in her wedding, knowing very well there was a chance I may not make it, due to her wedding date being a week after Leighton was due. She planned for both scenarios, as if wedding planning wasn’t hard enough? But she’s the kind of person that has to keep busy, always on the go. Which is an ironic way of describing her as she was a flight attendant at the time and her husband is a pilot. It was so difficult trying to figure out a dress for her wedding not knowing where I’d be size wise from the pregnancy. I bought my dress around 30ish weeks thinking that would make sense for being newly postpartum. Yeah, about that… with Leighton coming early, my mother in law had to take the dress in -8 inches- last minute. So, that was fun. Update: Life got difficult with her hubby being a pilot and having 2 kids under 2. For a while she tried making a point to drive out once a month but it just got to be too much. And my not being able to drive didn’t help any. We just kind of stopped talking but it was never on bad terms. Living over 45 mins away from one another and the stage of life we were in, it’s definitely sad but [life just happens]. It’s been a few years since we’ve seen one another but we keep in touch through social media.

Jenna & Matt: My Twinnie and SLSBSubby (secret lover, snuggle buddy, substitute hubby) <- yes, [obviously] they’re inside jokes + Igor is also Jenna’s Subby. Though, Matt is a pretty good snuggle buddy, even if my “legs are weird”. ::sideeyes:: For reference, Matt and Jenna are both 5’11” – I’m barely 5’2″ (yup; I’m only in my mid-thirties and I’ve already started shrinking… ::arggg::) Matt and Jenna have been together since ’04, so being used to snuggling someone her size for so many years, snuggling someone my size would be different, or “weird” according to him. Jenna and I also met in a P.O.T.S. group like Hannah and I, only it was via Facebook. It’s only been a little over 8 years but it’s like we’ve known them our whole lives! Jenna (aka Double N or 2-N Jenna) is the peanut butter to my chocolate, making the perfect Reese’s cup! Okay that was cheezy as hell but I don’t know how else to say it, haha. She’s pb&j with her bestie, and well we both love all things peanut butter and Reese’s soo it works, okay?! I could and probably should make them a seperate post as there is so much to say, but here we go…. Jenna and I are Twinnies because we are freakishly similar when it comes to our likes and things from our past, down to the SAME EXACT wedding dress!!! What? Like, how?

Here’s a short list of where we’re parallel: Favorite shape: stars, favorite animal: pigs (we also both have piggy collections), favorite color: pink (though as I’m getting older I’m leaning more towards purple but pink is still right there!). Halloween, Practical Magic and Jamie Fraser [IYKYK]; hobbies include: reading, puzzles, diamond painting and (the -same-) T.V. shows. We both were 3rd-Keys (basically part time assistant managers) at Claire’s when we were younger and cheerleaders in high school. We both have Dysautonomia/P.O.T.S./EDS and see the [same] cardiologist in a whole different state! I was going to school for forensic science and she was going to be a defense lawyer (<- yes those are very different but you need forensics in the courtroom). Our husbands are both PC gamers (both playing World of Warcraft at the time we met; we even hooked them up playing together before we actually met in person) and are they’re both weird anti-vegetable creatures. Neither of us could survive without pizza, peanut butter or ice cream. We both have a thing for old/antique keys (so much so that we got matching tattoos to represent our POTS, but it’s also an old key with a star, obviously). We both were recovering from “heartbreak” over our best friends <ghosting> us [10. Twin Flame] right around the same time. She’s a writer and I’m a blogger. Neither of us are able to drive regularly or hold a {real} job due to our health. And I repeat: SAME wedding dress!!

So I guess when I said it was like we’ve known them our whole lives, we basically have given our likes and dislikes. The above is quite literally just a >short< list and it doesn’t even touch on Matt & Igor’s similarities besides their love for PC games and disdain for veggies!! Matt is without a doubt the funniest person I know, without even trying. He is so quick with his comebacks or random statements or whatever – I don’t think anyone has made Igor or I cry as much from laughing, than just being around/talking to Matt. Where as Jenna is by far the most mentally strongest person I know, as well as the most thoughtful or generous person I’ve ever met… unless you piss her off!! Like, really truly get on her bad side. Which isn’t necessarily easy to do, even though she’s definitely the Queen of Swords and can be a straight up bitch when needed. <- a title she wears proudly, haha. She truly doesn’t care what others think and is always authentically herself. She has a heart of gold and goes way above and beyond for those she loves!! I can’t even count the number of times her generosity has left me in tears of gratitude since she’s come into my life.

That first year we met, we were basically inseparable – saw each other every to every other weekend and occasionally during the week. They were instantly our best friends. In fact, Matt was the first person Igor felt an authentic friendship with, someone to actually call his best friend. They talked daily whether it was via texting, Matt calling while he waited for his truck to be loaded or unloaded for work, or online gaming. And obvi, Jenna and I did, too!! Problem is: their other friends were starting to get upset and they felt bad letting them down, while also feeling bad for letting us down, as we had become so used to seeing one another so often. Admittedly it got a little awkward because they both started backing away without saying anything. [::Cue low self-esteem trigger: walls up and locked::]

I knew this friendship meant something more to all of us, so I pulled up my big girl pants and confronted Jenna outright. That’s how I learned the above ^… after talking things weren’t as awkward but it wasn’t like year one. Though, just like every new relationship – things slow down as time goes on, right? Prior to Covid we made a point to have monthly game nights on top of whenever else we’d get together. In the 8+ years we’ve known each other we’ve spent 4 NYEs together. They are our travel buddies from annual camping trips [Tent City >evolved<], to Canadian food festivals and ghost haunts at old prisons. We have SO many trips in mind and I look forward to each and every one!! They love our children as their own nephews and the boys obsess over them (particularly Uncle Matt because, well, video games, ::duh::). Matt came over while Jenna and I were out of town last fall to watch one of Kb’s baseball games [on the sidelines -alone- since Igor was coaching and Leighton was batboy]. He even then picked up pizza and they had a “boys night”. We may not all talk or see each other as often as year one but they’re still without question some of our best friends!! Scratch that, they’re [Family!]!!

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16. Year One

“The eyes of love have 20/20 vision when focused on another, and become entirely blind when focused on ourselves.”
– Author: Craig D. Lounsbrough

“And from that day on, they lived happily ever after. <3
– The end.” [14. Forever & Always] Taylor Swift wasn’t wrong when she sang, “this ain’t a fairytale” because life simply isn’t as easy as that!

Coming from the Jewish-Russian background there is some truth behind the stereotype of a “Jewish mother’s guilt.” And does Igor know it all too well. Thankfully mine isn’t too bad but there were definitely times that she laid the guilt down heavily. I try my best not to make my kids feel that way because they are their own people, I respect their boundaries as human beings and do not believe in dictatorship. Now, that doesn’t mean I am a “free range” parent because I definitely am not, there are rules to be followed, but I respect my children’s feelings and honor their autonomy for who they are. Here’s a quick example: my children are both biologically male and identify as so. My oldest decided when he was 5 that he wanted to grow his hair out, but felt pressured by society to cut it as “boy’s don’t have long hair” according to my in-laws [especially..] So he cut it, and instantly regretted it because he no longer felt like himself. After a few more hair cuts he realized that he didn’t care what people thought, he wanted his hair long (at first it was because Mom had long hair- you know that whole “young-child Freudian theory”, but as it grew he felt more and more himself.) He was and still is often referred to as a girl by strangers because he really is pretty and his long hair is gorgeous! At first it really bothered him, he didn’t understand why others just -assumed- he was a girl; it became the perfect time to open discussions about gender, society, and “old world” thinking. How some people won’t understand, respect or agree with his decision and he may get made fun of for it.  After a while, he just stopped caring! We have always tried to instill that in life, you need to do what makes >you< happy, even though others may not agree or like it. It’s NOT easy to do, especially when people you care about don’t agree, and that kids at school (& people in general) can be mean. If you make a decision that causes you to stand out, you need to accept there may be backlash and that you need to be strong enough to not let it change who you are. If it makes you uncomfortable we’ll work through it and come up with a solution, but that being who you are is important, is validated, is okay! As long as you are happy and not causing any harm – {nothing} could or would ever make us feel differently towards him!!!

This whole situation has made him so strong in not caring that he stands out. At school he is one of the only ones in his class still wearing a mask and using a plastic divider at his desk. His response to being different? “I’m the boy with long hair, I’m used to being the only one that is different.” <- Oh my heart sweet child! I could not have been more proud in that moment as a mother! See, the thing is, he has always been different and stood out because of his giftedness, and the fact he -knew- his brain worked differently broke my heart because he saw it as a flaw. Thankfully now he embraces it and isn’t afraid to humbly-brag. Oxymoron? Eh, whatevs. He is who he is and while it isn’t easy at times, I couldn’t be prouder for who he is becoming!

Before I came into Igor’s life he didn’t know how to stand up for himself against his parents. He never wanted to disrespect them, but he realized that being able to voice your own feelings and opinions, especially as an adult, is not only okay, it’s crucial to your own life’s happiness! His family doesn’t see it that way. He is their child so he should do as they say. Much like how they feel we are Leighton’s parents so we are the ones who decide how his hair will be. He is young and shouldn’t be able to make choices like that for himself… F THAT! I would -never- expect Igor to disrespect his parents, but simply speaking up to them, against what they say, even when done nicely, is disrespect in their eyes. I mean, they moved to America to give their children a better life, it shouldn’t be a surprise when they grow up “American” with American Xennial views. Oh man, I have so much to say but I’ll leave that for another post(s)… or try to at least, haha.

As I said in [14. Forever & Always] I was honest about my health from day one, even though he may not have understood the extent of it. I do not have Fibromyalgia, but it is a term he was kind of familiar with so I used it as a way of explaining my pain from EDS [06. HS/Diagnosis]. His older brother (and roommate at the time) overheard and went straight to his parents. He may have been older but maturity wasn’t there yet; he still told his parents everything. Looks as though Igor wasn’t the only one to feel he wasn’t allowed to have his own life. It actually took until meeting his own wife to also grow a “backbone”, per say. That led to a shitstorm thrown into Igor’s lap about how I was basically “defective”. That he shouldn’t want to be with someone [sick] because it’ll ruin his whole life, who knew what would be passed down to >his< children, etc. To them it’s all about how {they’re} perceived by -others-! My mom made a comment once about how if we wanted a third child we could always adopt; I wish I had my MIL’s reaction on film – you’d have thought my mother spoke of witchcraft back in the 1690s. The disgust, the horror, the shame, the shock. The spoken, “Oh, no. No, no, no.” as if just saying the word “adoption” was taboo enough. ::rollseyes::

Anyway, with Igor having never been in a real relationship prior me, everything his parents said got to him. He was confused and wondered, what if they were right? He didn’t know any better because again, at this point in time he was still very much under their thumb. Which – led to us breaking up… after 2 months of being together 2-3x a week and talking daily for 3 months. I was so thrown off I didn’t even know what to think. It literally came out of nowhere!

But as time went on I realized it was more like when Kev and I used to “break up” [09. First Love]. We still hung out fairly regularly and talked daily. We were each other’s “besties” and neither of us were pursuing anyone else. Annnnd ultimately still hooking up (though not at first). I think the second time we hung out post “break up”, we had gone to the zoo (the first being like a half hour visit because I needed to get him his 25th birthday present I had already bought). The zoo was part of his Jdate profile questionnaire [14. Forever & Always] regarding an ideal first date, a date that never happened while we were [together.] This was probably 3 weeks after the “break up” and it was genuinely a great day! At the end of the evening, my heart burst with jOy when Igor –asked– if he could >:kiss:< me! How stinkin’ adorable is that? I mean 10/10 in terms of respect but also, awe!!<3 I wanted nothing to do with this break up and he knew where I stood. So, in my heart, I felt that maybe this was him reconsidering his choice… but no. He just missed me and was even more confused than ever because, how could something that’s not [supposed] to be, feel so {wrong} not being so? He had never been happier in life before I came into the picture; I was the first person to open his eyes to a whole different world and the thought of me not being a part of his life just didn’t make sense!

However, towards the end of summer I noticed some new female friends commenting on his Myspace that were questionable for someone claiming they weren’t [looking to date anyone]. I sort of felt defeated, not going to lie. I [knew] we weren’t together but it was -just- like it was when Kevin and I were “off” but {not off}. Was I destined to a life of on-again/off-again relationships? Was I subconsciously allowing myself to be used (per say) thinking it was keeping them close? Why did I keep putting myself in these situations?!? Oh yea ..>< Love ><.. Only, it was different with Igor! If you were to ask me who I loved more, it would honestly be a complicated answer. My love for the both of them was/is so different that they’re simply not comparable!! With Kev it was the butterflies, childhood memories, teenage hormones and the {“firsts”}, but with Igor it was as if my whole being felt such a deep rooted connection, a calmness and -completion-. My heart and soul just felt complete with him near.

At the end of August I headed out to Seattle for nearly 2 weeks to see my long lost bestie, Tiffany. [11. Childhood Friendships+] I fell \ IN LOVE / with the city and truly considered moving there! A fresh start. I purposefully made it a point to talk to Igor as little as possible: out of sight – out of mind. Simply enjoy my time with someone I hadn’t seen in 5 years. If we talked it was because he texted me. I did send him a postcard because, well, I may have been hurting because of him but he was still my best friend and the one picking me up at the airport when I returned. However, while in Seattle someone else started texting me again and wanted to get together when I returned. I’ll give ya one guess since it’s not like my love life wasn’t already complicated enough or anything. ::faceMeetpalm:: 

After getting my bags I was met with the biggest bear hug, kiss and a gift. I guess a coworker was making candles and he asked if he could get one for me. Dang this rollercoaster of a thing called, <life> sure has its twists and turns. That candle by the way was never used and currently sits on display in our main bathroom. What can I say, I’m a simple sentimental kind of gal. And by simple there really isn’t anything simple about me in retrospect, but at the same time… yeah, yeah I am! ::shrugs::

Over the next couple months things were status quo between us, though we both were keeping some things to ourselves, which neither of us found out until a while later. I don’t remember where in the exact timeline he started, but he started playing soccer Friday evenings with a co-worker in Ann Arbor. With Ann Arbor being closer to me than him, he often just stayed the night at my place afterwards. I went to some games and his co-worker’s girlfriend just couldn’t understand why we weren’t together. Honey, same? He went on a business trip to Chicago and when he returned he came right to my house with yet another gift. Huh, if you’ve read my [Husband Appreciation] post you’d know he’s not a gift giver, and yet, now I’ve received 2 in maybe 2 months? This is what we call -deception- my friends. Haha. Joking, kind of. But really, I find humor in this now reliving it because that wasn’t the last gift I’d receive while still “broken up” – in fact there were 2 more in December alone! ::HandsToCheeksShockedFace::

I come from a very musical family and love musicals. My grandfather used to take me up to Stratford, Canada to see them growing up. Stratford is known for their Festival of modern and Shakespearean plays in multiple theaters. It was also tradition that he sang, “Sunrise, Sunset” from Fiddler on the Roof at family weddings; I am so, SO grateful that he was able to at mine!! What an honor to bear witness, what became his last [true] performance! All of that said, one of my favorite live shows is }Wicked{ and I had seen it once before. Mom had gotten me tickets for graduation; so Jessie and I went since it was Jessie who introduced me to Wicked to begin with. [11. Childhood Friendships+] Wicked was coming to town and Igor got us tickets! What?! He even made plans with his best friend to get tickets for him and his girlfriend, too. It was the first time I had met either of them. Yup, 9 months and I hadn’t even met his best friend. Also, not awkward at all to have his girlfriend, whom Igor had only met briefly once before because the relationship was still new, pick me up so I could wait with her until the guys came after work. Nope, not awkward at all… <- Honestly? I don’t know how I did it! But she was so friendly and outgoing, she talked as if we’d been friends forever. That’s just the kind of person she is, though, we really did end up becoming friends and they even ended up getting married one month before Igor and I.

For those who are unfamiliar with the show, one of the most popular (punny because there is a song Popular) known songs is, >For Good<. If you haven’t heard it you must, here; you’re welcome! Here are just a few of the lyrics but the main point of the song:
“Who can say if I’ve been changed for the better?
I do believe I have been changed for the better
And because I knew you
Because I knew you
I have been changed
For good”

So good, right? I get chills just thinking of Idina Menzel and Kristin Chenoweth singing it! With Marion being my [10. Twin Flame] this song always resonated with the two of us, still does. I think of both her and Igor anytime I hear it, must be because they’re my two counterparts! Anyway, during the show, during that song, Igor grabbed my hand, held it tightly and tried his best not to let the tears in his eyes fall down his cheeks. I was unaware at the time, but apparently he bought a necklace from the souvenir stand, and said necklace was given to me for Christmas! There went my heart flip-flopping again! Guys… see what I mean when I jokingly call his actions deception? Like, how does one NOT take that as a good sign?!?! We spent New Years together and it was honestly one of the best evenings together since the “break up” that it/I legitimately felt like we were getting back together… [officially].

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Exhausted.

When you’re tired of, well… everything and you’re stuck in limbo, it’s really difficult staying motivated to be productive. So much planning, so many ducks needing to be lined up exactly in the perfect row, so much packing, so many unanswered questions, so many decisions needing to be made… like I don’t mind doing the above, it’s trying to care to do everything else that’s the problem.

I hate clutter, it drives me crazy, overstimulates and triggers my anxiety. I become paralyzed from being overwhelmed due to my ADHD. <- Is it still considered hyperactive as an adult when you certainly don’t have the energy to even think about being hyper? The problem is, no one else seems to be bothered by any of it. So unless I am on top of keeping everything organized and put away, it sits. Until I do it.

I’m exhausted.

I get it, my husband works all day and he shouldn’t be in charge of everything else, too. We’re supposed to be a partnership, but when I’m sick – he’s on single dad duty and I >know< how much more that adds to his plate. It’s not fair to him, I agree! And he does help out keeping on top of the dishes, garbage and our cat’s litter box on his own, but maybe picking up a dish or cup off the kitchen table when they’re not in use wouldn’t be so bad? Again, I get it, he has so much on his mind for work, bills, trying to maintain my love language’s bucket, etc. that his brain is preoccupied. I get it. I do! But is it really that hard to walk your soda can over to recycling instead of leaving it anywhere else? Or leaving their socks right where they take them off? (Ha. I know most wives feel me on this one! Husband’s too, I’m not excluding any significant others; I just tend to hear more about it from wives. ;-p) And NO, this isn’t a passive aggressive way of harping on him, these are examples of conversations previously had. It should also be noted that while we are a partnership, he is hardwired from generations of “women take care of the household and children” coming from a Russian culture. He absolutely believes it should be a partnership but I am the one home, so when I’m not sick it should be more on me. Again, I agree!!!

Though it doesn’t change the fact: I’m exhausted.

Then there’s the kids who, well anyone who’s had children or been around them for any amount of time, understands how they’re mini tornados that don’t care what they leave in their wake. Kid’s are the worst when it comes to all things clutter. I mean, my oldest has admitted he doesn’t like cleaning his room (what child does?, besides my Lori-Lou [02. & 11.]) as he too has extreme ADHD, so the overwhelming thoughts of where to begin, I understand. However, there is also legitimate truth behind his thriving in the organized chaos he creates.

Just looking into his room, I’m exhausted.

It’s been 2 years of ciaos due to the pandemic and the battles between masks and vaccines. The weather cannot make up its mind so the constant switching of barometric pressure causes any dysautonomiac [06.HS/Diagnosis] their own personal hell! It’s hard enough just to get out of bed some days. Going through hormonal changes in your thirties, more unanswered health questions for why I’ve gained 25lbs in the past year. And now Russia is initiating what could very likely result in World War 3?

I’m exhausted.

Why bother organizing and putting everything away when you are just going to be demolishing their homes, at an unanswered time? Planning a kitchen remodel/new flooring is exhausting, but I enjoy it. I’m just struggling to find the motivation to clean up the clutter when I know my house will be -organized chaos- in hopefully >fingerscrossed:knocksonwood< short order. But with the pandemic and what Russia has just done to Ukraine, all uncertainties are even higher up in the air. Looking around and seeing all the… stuff, not only overstimulates and triggers my anxiety and overwhelms me to the point of paralyzation, it exhausts me.

I. Am. Exhausted.

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11. Childhood Friendships +

‘Childhood friendship is the most beautiful memory that can never be replaced.’ – Unknown

Lauren; my sissy-poo, has already been discussed a bit back in post [02. Dad] – but after 6th grade she moved about 35/40 minutes away for her mom’s new job. You always grow apart when people move, however we’re ~family~. We may not have seen each other often but we remained very close. Anytime we did get together it was like no time had ever passed, we never skipped a beat. Update: she’s still very much a part of my life (30 years this year!) and prior to Covid we tried to get together monthly with our moms. She made me an Auntie and it’s the best feeling knowing that our kids are going to grow up together. Even if mine are older, lol.

I’ve mentioned my tiny but mighty, strong willed friend Jessie [06. High school] but I haven’t really discussed her. Jessie has a twin sister, Jenna, so it’s ironic that while I was friends with both of them, Jessie and I were closer. They were a year younger and lived across the street from Lauren. Small world moment, when their mom stopped working to have them, my dad was hired to replace her at his current job. We didn’t find that out until many years later. Also an ironic fun fact, my mom had a nanny, who then went on to work for my dad’s boss (before he was my dad’s boss) and then quit working for his boss to work for my parents (again, before he was my dad’s boss). Seriously crazy 6 degrees of Kevin Bacon we’ve got going on over here! Their mom was (is?) an alcoholic and they were very much victims to life with an addict parent. There were a few times throughout our friendship that their mom didn’t want them hanging out with me for no other reason other than her need to control. Which sucked because Jess and I were best friends. We were basically inseparable in middle school. By the time Jessie was in 11th grade, life at home was so bad that she actually moved in with my mom and I. That’s why she was with us that day seeing the principal. She was also with us because around that time, Jessie – your typical straight A/B+ student, decided she was done with high school bullshit and dropped out. Figured I was going for my GED. Why shouldn’t she? … Like I said, a victim of life with an addict parent. Update: I’ll always love her and wish her well, but unfortunately the friendship was just too toxic to maintain. She met my husband once after we were engaged, though I haven’t seen her since.

Closest friends by grade in high school:

9th grade: Annie, Teisha (the new girl in 8th grade [from 10. Twin Flame] and Tiffany. Teisha and Tiff both moved to other states for 10th grade and yet I have maintained friendships with them both. I was actually part of Teisha’s wedding and flew out to Seattle to witness Tiff’s. To this day Teisha and I joke about how we actually met because how can we not?

10th grade: Jennifer and Eric. These two went on to get married just after high school but unfortunately Eric was in a terrible hit and run accident that left him with severe brain damage. Their marriage may have ended but they are still very close and I commend Jenn’s current husband for not feeling threatened by their maintained friendship!

11th grade: Jami and Shannon. Shannon’s mother was my chorus teacher’s assistant teacher, whom I was very close to as well, and cousins with a coworker of mine at Claire’s. It was actually Shannon’s birthday the day I returned from the Mayo Clinic for the first time [06. High School/Diagnosis] and the day I had my first car accident. Oh, welcome home Jena and happy birthday to you Shannon. What a way to spend your 17th birthday. Ugh, sorry Shan!

Jami… my Jaymlinn. Jami had a difficult past to say the least and wasn’t the most well behaved teenager because of it. She was a sponsored skateboarder but her poor choices took that away from her. She was sent to live with her uncle and his husband in hopes of turning things around. That’s where I enter the picture. Jami and I met in Health Occupations class the first day of junior year. There was just this cosmic magnetic pull between us. I really cannot explain it, but she was meant to be in my life and I, her’s. She never took things too seriously and just wanted to have fun. She was an incredibly smart, kind, considerate girl. A short story writer, singer/songwriter and artist – but unless you really knew her, she just appeared as an aloof, slow, stoned – but not – stoned teenager. But I can assure you she was so much more. When we first became friends her uncles couldn’t get over the change in her. I apparently was such a good influence that they wanted me around all of the time, ha, ha. It must be the empathic healer in me. I didn’t know it because she stopped drinking when we were hanging out, but she was an alcoholic. And knowing her past I don’t blame her for trying to shut out the noise, I just wish she had the chance to in a healthier way!!

Somewhere along the way Jami fell in love with me. I had no idea and I can only imagine what it did to her when Kevin and I were good. One night at a party we were playing truth or dare. Her friend must have known or suspected her feelings towards me because he dared me to kiss her. No problem, kissing whore, remember? Jami certainly wasn’t the first girl I had kissed but I was apparently her’s. She struggled with her sexuality and that kiss just made things more confusing. For us both. In middle school there was one girl at the skatin’ rink from a different school whom I always joked around with and we called each other each other’s girlfriend. The boys went crazy over it, especially when we kissed [we never made out or anything, just a simple peck].<- Man, I really was bad… We never hung out or saw one another other than at the rink but everyone [knew] we were “girlfriends.” The joke kind of faded as highschool went on and the only time we ever talk now is via Facebook when we wish each other a ‘happy birthday’, seeing as we share the SAME birthday… and similar name, lol.

I had known I was interested in some way to both boys and girls for years, but I never really entertained the idea of actually dating a girl. In fact, it took me until my 30’s to be able to fully understand and define myself. I always said I was attracted to the person for who they are, which is true. I need to have a true emotional connection with someone to allow myself to be vulnerable or intimate with them. I’m simply unable to just look at someone off the street and desire them, but I never really thought anything of it. Then one day I read the words “Biromantic Demisexual”. Upon researching meanings I discovered exactly where I stand. I have always described myself as exactly how those two words together, is defined. Hi, I’m Jena and I am a biromantic demi woman.

I was very confused when I started to develop feelings for Jami, because, well.. Kevin. Even though Kev and I may have been “broken up” we were never [really] broken up. We still talked daily, hung out, hooked up and still shared “I love yous”. We didn’t have the label but we also didn’t try pursuing anything with anyone else. At this particular point in time I was technically single but I still felt as though I was cheating. However, I couldn’t stop myself from being close to her, kissing her. I felt as though I was this whole different person experiencing my first love. I was so confused I started to pull away and she started to slip. She started drinking again, hanging out with the wrong group of people and dropped out of school. Yup, I’m the asshole.

I certainly did love Jami; it was a type of love I’ve only ever experienced once and I know I won’t ever again. Update: we’ve been in touch here and there throughout the years but really only via Facebook or text messaging. As it turns out, she was actually diagnosed with Autism as an adult and looking back it makes a lot of sense. We did get together once to catch up for the first time in easily a decade, shortly after my youngest was born. It was nice to see her but she admitted her feelings came right back the instant she saw me annnnnd I exited stage right. I felt bad, I still do, but that’s not something I can take on. She’s a part of my past that I’ll smile upon when I think about, but in my current life we’ll only ever be a memory. I do check in from time to time because I genuinely do care for her wellbeing. [empathic healer, remember?] I wish her nothing but happiness and success, which seems to be working in her favor as she’s been 100% sober for some time now and is getting married later this year!

12th grade: Sheri. Sheri used to live 3 houses down and across the street until she moved to Florida in high school. I was so sick by this point that all of my ‘friends’ had [forgotten] me. Out of sight out of mind, ya know? Sheri and I had always been friends but it was when I was sick that we were our closest. My best and essentially only friend lived thousands of miles away, how sad is that? I owe so much to her; I don’t think she truly understands how special and important she was to me and how much I’ll always be grateful for her! I admit and apologize that I unknowingly took advantage of her friendship. She went above and beyond for me while I visited Florida twice for spring break, celebrating my 18th and 19th birthdays. But when it came to her visiting Michigan and trying to move back here, I wasn’t around. I promise it wasn’t intentional and looking back I feel terrible knowing that I more than likely let her down. I am not going to sit here and try to make excuses for why I was [selfish] because there’s no excuse for letting your best friend down. Period. I own it and will never stop apologizing. Update: She did move back to Michigan but we weren’t in contact much. She has since moved back to Florida with her husband and we’re friends on Facebook. She is working towards her Masters in Social Work and with her love and compassion, her clients will be beyond lucky being under her care! She was the best thing I could have asked for, better than I may have deserved; I will forever be eternally grateful for her love and support during the worst time of my life. I honestly may not have made it through without her!

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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?