An Open Book on my Health... and probably TMI...

So I thought I would share a much (much) longer version of my About Me section – in case any of my early warning signs I missed could help anyone else. This is going to be long, it is going to be a lot, and it is probably going to be TMI at several points. But, if it can help even one person, it is worth it.

When my husband read through it to check for errors, he said it is a good example of my brain’s information dumps where I have squirrels all over the place and start discussing one thing, then jump to another. Sorry for that! Ha, but he also said it is good, because it helps you, as the reader, see some of my challenges in life. I am glad it will help you see that I am not a perfect person! Part of the jumping in topics is my attempt to write this piece in a timeline format. The rest is truly just the erratic beauty of my brain.

From the beginning

I was born and raised in the Southeastern United States. A descendant of two coal mining families from the southern Appalachian region (and to be clear, that is pronounced App-uh-latch-un, don’t come at me with that App-uh-LAY-shun mess) and my genetics show I am 99% northeastern European – you could call me “Whitey McWhitington the White” if you would like. And I look like it too - one of my counselor friends at a summer camp lovingly called me her “sister without pigment.” Side note, because I have discussed genetics with some others also with shared genetic conditions, some of my ancestors include Charlemagne and the Aethl--- namesakes of 9th century England (if you’ve ever seen the show The Last Kingdom on Netflix, it is the family of King Alfred). One person joked that she has picked a specific royal to blame, but that is just one of many nerdy tangents I am sure I will go on. I have no clue how my family went from royalty to poor Appalachian coal miners, but here we are.

We were a traditional nuclear family of four. I have one sibling, a brother, who is a full decade older than me, and he is the closest in age to me of all my cousins, which makes me the extreme baby of the family. My brother loved me from the start, as I was the best birthday present he ever received. As a child, I was involved in everything I could – dance, gymnastics, cheerleading, church youth group, Girl Scouts, I took baton lessons, piano lessons, swim lessons (which led to swim team), the list could probably go on if I thought about it more. I was probably over scheduled, and looking back, part of it was because I never felt like I fit in or had any friends anywhere I was. I felt like I was always on the outside. I have always been extremely emotional as well. I have been told my whole life that I need to get over it – but, to me, that is like telling someone who has an allergy to peanuts to “just get over it” – it is part of my being, and there is no changing it.

As a child, I was also decently flexible, but nothing special. I had a hard time doing splits and coordination was not necessarily my thing (or my brother’s, ha!) I could, however, do some cool tricks. I could bring my feet in front of me and put them behind my head. My foot could be used as a make-believe phone either forward or backward in a scorpion style position. I could put my right hand flat on a surface, keeping my arm straight at the elbow, and rotate my hand a full 360-degree turn. So many little things that were just written off as being “flexible” or “double-jointed.” Another thing I remember for my entire life is motion sickness. I grew up going to see family throughout the southern Appalachian areas – from West Virginia to eastern Tennessee. If you’ve never been to those areas or the areas in between… lets just say there are a few turns so sharp you can reach out your window and practically touch your car’s bumper.

Academically, I was a good student, the kind that didn’t really have to study. That said, I was not a superstar or even close to becoming valedictorian. I have never been someone who knew what I wanted to do with my life – the truth is, I still don’t know. I do know I have been driven by “the right thing” and “the good of the people” for a long time, so I guess Gut, Heart, and Soul makes sense – as a way for me to share with others my experiences to help them get answer earlier. Especially in a time where doctors are turning many away if an immediate answer can’t be found.

Growing Pains

My grandpa and I relaxing in the 1980's

Health wise, I was decently healthy growing up. I did have a LOT of strep throat, tonsilitis, and other throat related conditions. The doctors always said “one more time and we’ll take your tonsils out” but they never did. Remember this fact, as it will pop up a few times in my story. Going back to my flexibility, I had a lot of hyperextensions and dislocations in elementary and middle school, particularly with my elbows and shoulders, but I never broke anything. Compared to my brother, that was a blessing to my parents. His personal medical record was super thick, and my mom joked that some of the hospital admissions procedures were probably created by their constant presence, and the staff knew her by her first name. Ha. My baby teeth didn’t like to come out on their own, I had to get most of them pulled by a dentist. I also had to get four permanent teeth pulled in addition to my four wisdom teeth to make room for my teeth to be properly aligned with braces. As an adolescent, I started to get migraines. My brother also gets them, but neither of our parents ever complained of them. In high school, I had a serious sore throat for a while and eventually tested as having had mono, but it wasn’t active anymore – I was already in the healing stages. Yep… that “one more issue with your throat” came and went again with no removal of my tonsils.

A year or so later, when having my annual physical for high school swim team at age 16, I happened to be a little sick and had taken an over-the-counter medicine with pseudoephedrine in it before this visit. When the doctor listened to my heart, I was told I needed to go to the hospital for some testing. I had been told a little earlier that the doctor thought they heard something, but determined it was just a strong, slow heartbeat. But this time, the medicine made my heartbeat more pronounced, and they had heard an issue. I went through an echocardiogram, EKG, and testing for Marfan Syndrome, as I am a giant. Ha, ok, not exactly a giant, but I am a relatively tall woman at 5 feet 10.5 inches tall. My build was very thin – my weight was around 140 pounds per a college application copy I recently found, because they still asked those things back then. Thankfully, I was told that I did not have Marfan Syndrome, but I did have a condition called Mitral Valve Prolapse. Cardiology would be part of my life from then on, and there is a chance that I will one day have to have a repair or replacement of my valve.

Some of the potentially TMI – and a warning to my male readers specifically – girly parts discussion coming up! I started having my “monthly cycle” in seventh grade, but my period was anything but monthly. I would guess I had an average of four cycles a year for most of my teens and early twenties. Once I started on birth control pills, my periods actually stopped completely for a couple of years. Going back to talking about my constant strep throat as a child, when I was a sophomore in college, my tonsils ruptured while still in my throat. Did you even know that could happen? I didn’t, and only the oldest doctor in the Ear, Nose, and Throat specialist my mom took me to had heard of it happening one other time. Also in college, I started having sharp pains in my stomach, only very rarely, in the middle of the night. I always thought it was food related or illness related, but now looking back, I wonder if it was slowly emerging symptoms of what would come full force years later. Skipping forward a few years, I started getting stomach bug type symptoms when I would have any alcoholic drinks. Not very fun, but hey, at least I’m a cheap date for my husband now!

The First Big Debacle

Our Beach Wedding

Three days before our wedding, which was to be held on the beach of the Crystal Coast area of North Carolina, I used a sunscreen that I had used before, by a brand that I had used since childhood. Well… my face decided it was no longer something I could use. I had a severe allergic reaction to the popular name brand sunscreen. We went out as my face started burning first and got Benadryl. I took a dose of medicine and went to bed, hoping to be back to normal in the morning. The next morning, I woke up with a significant amount of swelling in my face – I could barely open my eyes. We went to an urgent care back on the mainland, as there were no doctors open on the island. When I got there, the receptionist asked what I normally looked like, and when I held up my driver’s license, the next question was can the person with you fill out your paperwork? We need to get you back as soon as possible. With tears flowing and a nod yes, they immediately opened the doors to the back and got me in a room. Three shots in my butt and a prescription of prednisone later, I was instructed to stay out of the sun, avoid anything else on my face, and return the day before my wedding if I needed additional help controlling the swelling. Since then, my skin has had only milder reactions thankfully, but additional reactions to things such as laundry detergents, dermatologist recommended sunscreens, and some other dermatologist recommended skin products. (The story ended well. While I was at the doctors, my now husband ordered a strict ban on photos until I looked back to normal among our wedding party and family members, and my face was nearly normal for the rehearsal dinner and close enough to back to normal for the wedding.)

Getting pregnant was a challenge for me. I was able to get pregnant twice and have a healthy baby each time. But it was on my last month allowed of the highest dose possible of a combination of medicines each time. I have two amazing boys that I am so thankful for. My first pregnancy was hard in the sense that I experienced morning sickness nearly the entire pregnancy. I had about 6 weeks of not feeling horrible. Due to the various medications used for trying to get pregnant, I had gained some weight before my first pregnancy. My sickness turned all that extra weight into growing the baby, and I literally went into the hospital to have my older son at the same weight I was when I got pregnant, 219 pounds. I was working throughout my pregnancy and pulled out of work at 37 weeks because of a rise in my blood pressure and induced for labor at a few days over 38 weeks. Oddly enough, I didn’t feel any contractions until they broke my water, even though the various monitors showed I was having them.

For my second pregnancy, I didn’t have as much morning sickness, thankfully. I still had an aversion to food though. I was working at the beginning and started feeling really poorly and eventually made the decision to leave work. After leaving work, I could be sitting at a computer desk at home doing a small task and feel like I was getting dizzy and would soon pass out. I never did pass out, to be clear, it was just a feeling that I was close to passing out. The doctors never figured out anything that could be causing that other than my pulse rate was very low – in the low 50’s and once a 49. I also was asked to have a pre-natal scan of my baby since I have mitral valve prolapse to make sure everything was safe for the baby or to determine if they needed any specialists there for my delivery. Boy, was that an adventure. The technician told me she was having a hard time getting a few angles and needed the doctor to come try. The doctor came and got some additional images, and they went to analyze everything. As this was a relatively normal experience for me with my own heart, I went alone to this appointment. Huge mistake, as the doctor came in to give me a thirty-minute-long dissertation on a condition some people are born with where their organs are reversed between the right and left sides of their body and the complications that can follow. It was all I could do to try to stay calm to understand what I was being told about my child and what was to come for our future. Then after the thirty-minute lecture, I was told “but your baby is just twisted in your belly right now and everything is aligned as it should be.” OH MY GOSH… such a relief and at the same time all my pregnancy hormones made me want to choke the doctor for not leading with the everything is fine message. Things were looking good at my two week 37 checkups and then for my first week 38 checkup I was told to immediately go to the hospital to be induced because my blood pressure had changed. But thankfully, as I shared earlier, both of my boys were born healthy – with all organs placed on the correct sides of each body.

When Things Really Starting Going Downhill

When my second child started half day preschool, there was a period when Hand, Foot, and Mouth was passed around between the students. Both of my kids were at the school, and we were a “lucky family” in that both boys caught it and as an added bonus, I also contracted Hand, Foot, and Mouth. My boys were far less impacted than me, which I was very thankful for in many ways. I had so many sores on my hands that I had to find soft, thin cotton gloves to wear so I could sleep without the sores rubbing one another in between my fingers. A short time after recovering from that, I went on a flight to celebrate my best friend earning her doctoral degree. It was a short flight, from North Carolina to New Jersey, which should have been just a regular day, as I had previously flown to England, Australia, Jamaica, and other much longer flights. On this particular flight, we hit some significant turbulence. My husband was keeping an eye on our flight with a flight tracker system he had utilized for his work on several occasions and said the conditions appeared to be some of the worst he had seen recently. Now, I have never been a person interested in sky diving. Not in the slightest. But on that day, if I had a parachute handed to me and some simple instructions, I would have totally jumped from the plane. The man in front of me was repeating The Sign of the Cross on himself over and over, which didn’t help. That day, I had my first panic attack and was so sick I couldn’t enjoy most of the activities planned for my friend’s graduation, which made me feel even worse mentally. I also couldn’t bring myself to get back on the flight home, and my husband drove to pick me up, adding to my guilt. 

Not long after having the panic attack, I realized I wasn’t truly getting better. I did improve some in many ways, but in other ways I was almost getting worse. I dropped 50 pounds over a course of two to three months from extensive restroom trips, vomiting, nausea, food aversion – it was so bad that even a tiny sip of water would make me nauseated. I had started to work again a while after having my second child, and again, I had to quit working to take care of my own health. No one could figure out what was happening. I was seen by primary doctors, gastroenterologists, holistic medicine practitioners, neurologists, chiropractors, nutritionists/dietitians, and more. I visited herb shops, reiki practitioners, was treated for parasites, and even ordered my own online genetic testing and a had food allergy panel drawn. One scan showed potential gall stones (but I had no pain in my stomach when they pressed on me) so I had my gallbladder removed – with no relief from the procedure. It did take me over a month to recover from that though, because I was still super sick and taking (doctor directed) multiple doses of Zofran just to be able to lie flat on my back and not get sick. I also found out at this point that I had developed an allergy to surgical tape as I had a big box shaped rash on my stomach. Sounds fun, right?!?

Seeking Answers for a Seemingly Invisible Illness

It took years of time, research, seeing a slew of medical practitioners, meeting new friends, and trying various ideas to get my health back. I was prescribed a medicine for IBS which made my eyes begin to function independently of one another. One eye remained looking at the pastor, and the other was looking at the cross on the wall until it started moving somewhere else. That was a scary allergic reaction and I was later told “that only happens to old people” – another time I’m an abnormal presentation of something. I shared my experiences with anyone I could, even just random strangers in places like the waiting room at the hospital when my mom was having a gamma knife procedure. (“Squirrel!” moment aka side note, my mom is a three-time brain tumor survivor – how amazing!) This random setting conversation was actually the beginning of my diagnosis. Another family waiting for a gamma knife procedure was there for the woman, who has multiple sclerosis. She shared that some of my story sounded similar to hers, and she urged me to talk to my doctor about bigger concerns. I finally made a list, which was four pages long when typed and printed, of everything I was experiencing – so even this story doesn’t capture it all, unfortunately. I talked with some other friends, read even more online, and made an appointment with my doctor.

My doctor scheduled an appointment for me with the Duke University Hospital neurology clinic to see if they could help me get more answers. Around this same time, I met a new neighbor who happened to be a physical therapist. I was describing some of this to her on our second or third time hanging out and she said “I’ve been wanting to tell you this since the first time I met you, but I didn’t want to seem overbearing. You don’t have MS, you have a condition called Ehlers-Danlos Syndrome.” She told me that she, too, has Ehlers-Danlos, and she passed it on to her kids. She actually gave me a very informal screening right then and there in her backyard, using the diagnostic criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS), which I “passed” with flying colors. Armed with this knowledge, I went to my appointment with Duke and found out they had recently lost their EDS practitioners, so I was only seeing the MS specialists. The team of doctors agreed I did not have MS and said they were not allowed to diagnose hEDS (or any other form of EDS as there are 13 different subtypes) but that they were certain that was the diagnosis I needed to go after.

My mom and I exploring downtown Queretaro.

At the same time as getting my own diagnosis, I was beginning to seek some more information on my older son. He was identified by our local school system as highly academically gifted, but after the hit of COVID, we began homeschooling. It was then that I noticed some inconsistencies in his learning and his abilities. He is very intelligent, but interchanged his p, q, b, and d letters, and often made the letters t, x, and y that looked similar. He would also put spaces in between letters of single words, while in the same sentence put three or more words together without a space at all. In the testing process, he was checked for learning differences such as dyslexia and dysgraphia, as well as other differences that could also make an impact on his learning such as ADHD and anxiety. As part of the process, I had to fill out a parent evaluation to let the psychologist know what signs and symptoms I observed, and how frequently. While filling out these forms, I saw a lot of myself in the questions and answers. Looking more into ADHD, Anxiety Disorders, and even the Autism Spectrum, I saw a lot of things that apply to me. Others have confirmed those feelings and additional research has shown that there is a correlation between diagnosis with forms of EDS and neurodivergence.  

If you have made it this far, congratulations! You definitely have perseverance and I applaud you for that. I hope in sharing, that my long path to receiving or just understanding some of my own diagnoses are helpful to you. Again, none of this is meant to diagnose anyone else – only to share my personal journey in hopes that it can encourage someone to keep looking for answers, keep asking questions, and keep fighting for better health.

I am still learning and researching myself. In fact, as I have been writing this article, a friend from college reached out to me with a new to me treatment that she has been utilizing for some similar things she is going through. I am super excited to learn more about this technique and if I find it helpful for me, I will definitely share all about it. Or who knows, I may even ask her if she is interested in writing about her own story to contribute as a guest writer.

Thank you again for reading my story, and if nothing else, know that no matter what you are going through, if you feel like no one believes what you are going through in your own health journey, I do.