Tag: Covid-19

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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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Rant… 01.

Okay, so here’s the deal. This entry is completely improvised, on the spot and will not be formatted or anything special. I don’t even care if I edit it, I’m just so damn frustrated!!

Of course, now I just received an email that has me in tears so writing this will be all the more difficult… FFS!

Breathe. In slowly, out slowly. Repeat.

I was initially going to rant about how messed up health care is in America, and I will at some point, but I need to rant re: covid-19 first! As someone who is chronically ill, it’s so damaging knowing that your life literally doesn’t mean a thing to Joe Shmo on the street. It’s a total mind fk! I get it, we’re ALL tired and angry and over it. But this pandemic isn’t over! And no, I am not Naïve in thinking this virus is going anywhere. BUT! It still needs to be taken seriously, if not for yourself than for those of us who are at severe risk of complications!!

Admittedly, I am not Christian, but isn’t the whole Christian belief supposed to be about caring for others? Caring for thy neighbor? Loving and respecting one another? The only thing I have been met with is, “stay home then” as if I don’t deserve to [live] as well! Why is my life less important? To date, we have lost 942,006 human beings to Covid-19 in the U.S. alone. And yes, I know I will be met with backlash that not every death was covid related and blah blah flippin blah. I get it. I understand and agree numbers may not be 100% accurate, but isn’t one life lost enough? If you could do your part knowing that you’re doing the best you can to save someone’s life, isn’t that enough? For those who are pro-life they sure don’t act like it. They protest, “my body, my choice” but isn’t that down right hypocrisy?

It hurts. I am angry. I am sad. I am beside myself that people are so desensitized to the death toll and have completely lost their empathy!! The only way through this is together! Why is it when 9/11 happened that everyone came together in unity, but now it’s all political? I truly feel I am living in an alternate reality…

Do you know how heart breaking it is as a parent to witness the fear and anxiety their children face knowing they may potentially bring home said virus that could turn their world upside down with the loss of a parent? The guilt they already feel when nothing has even happened? It fucking sucks! Yes, I am terrified myself but I do everything in my power to assure my kids that everything is going to be okay! We are all vaccinated, we wear our masks, wash our hands, stay out of public when possible- hell, we even still wipe our groceries down! We do our part and by continuing to do so, we will prevail. <- but will we? I honestly wish I could promise them that but I won’t (can’t) make a promise I cannot keep!

What triggered this rant that took me away from venting about health care, is the fact our school district has decided to drop the mask mandate later this month that has been in place since August. My oldest, who has severe anxiety, is already saying he can’t return to school. School is and always has been his [happy place]! He is gifted and loves learning everything he can more than anything. After being home/virtual all year last year, being in the classroom has meant everything to him. But now? He’s taking on the burden of potentially bringing home something that could potentially kill me. How TF do I calm his nerves? How TF do I make him feel safe and comfortable? The answer is, I can’t… and that is more heart breaking and damaging than anything else!

I’m scared. I’ll admit it. I’m scared for myself. I’m scared for the the impact this is going to have on my children. I am scared for my parents, brother and everyone else out there who is high risk. As an empath, I genuinely, deep within my soul, simply cannot comprehend what is happening. My kids need answers that I cannot give them, as I myself need the same damn answers.

How do we legitimately live without just surviving? How do we forge forward while maintaining our mental health stability, strength and courage? Please, please someone help me understand because my own light is dimming day by day.

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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?