Always the Sick Girl

For as long as I can remember I have had health issues, but being a child from the 80's and the grand daughter of Russian immigrants made most of my syptoms go under the radar. We joke about it, but it's so true that in the 80s we could have a bone sticking out of our leg and we were told more often than not to walk it off, and this isn't a dig on my parents specifically, but just on the 80s as a whole and the frame of mind of "it's not that bad".

My dad's parents were Russian immigrants who lived not to far from us in Memphis TN and we spent what felt like more time at their house than our own home. They lived in a small two bedroom house on Faxon Avenue that featured walls just covered in a sticky yellow residue from their years of smoking cigarettes at an alarming rate. I often chose to spend my time in the backyard at their home as the smell of cigarette smoke began to nauseate me after being around it for hours on hours. They had a huge yard with two apple trees and a massive garden that my Papa George maintained year round. I would often try to mask if I was not feeling well as to not be a bother (hello early stages of being a people pleaser) and would go walk in the garden to try to feel better, but if I did complain about not feeling well my Gramma Janie (short for Eugania) would dive into her stories of crossing Europe on foot to flee Russia and giving birth to my father in a field in Germany and if she survived that then I could survive whatever ailments I had so I learned very early on in life not to be vocal about not feeling well because someone else had it worse.

Years went by and after a few hospitalizations and random surgeries to fix things that were hurting me, I finally met my husband. We had dated for a short year while I lived in NYC and he lived in Fort Worth, relishing every open moment we had to travel to see eachother. One year later, we were engaged and living in a townhouse in Fort Worth. I would still not want to share everything that I was going though with Justin, as not to be a bother, but Justin would notice those things any way and would be rather concerned that those things were not normal at all and he pushed me to get medical help. I was sent to a urologist and a gastrointerologist, because most of my problems seemed to be related to those kind of issues. I got a mostly clean bill of health from the Gastrointerologist, with the exception of having GERD, and a not so clean diagnosis from the Urologist. I was told that I had a cystic bladder that may cave in at any point and a mass on my right kidney that he was sure was cancer. I still look back at that moment and hate that he was so confident that it was cancer when it ended up not being cancer. He diagnosed me with Kidney Disease, did a few extremely painful procedures on me and put me on SEVENTEEN different medications... Seventeen... These medications barely had me functioning and had caused me to have a seizure in the parking garage of where I worked. I finally went to the Doctor my parents had been going to, Dr. Evans. Anyone who knows me knows that I just sing the praises of Dr. Evans. My first appointment with him he sat and listened. That was it. He wanted to hear everything I had to say and to understand what I was feeling. He immediately took me off of all but one of the medications and had me go a different route that began our journey of making healthier choices in life.

Justin and I had two beautiful babies with pregnancies that were hyperemisis nightmares, but at the end of the day we had two beautiful and healthy kiddos that we love with all of our hearts. When Riley turned one I began to have insane stomach pains and my life of random vomiting that no one could understand became much worse. A few ER trips, one massive scare for my mother in law (sorry Diane) and an endoscope and colonoscopy later and I was diagnossed with Celiac Disease/ Gluten Intolerance. We were on a pretty steady course of finally starting to feel a little more normal when in August of 2018 I had a scary incident happen with my breasts. I was sent to a breast specialist and the decisions made to have a preventative double mastectomy with DIEP Flap so that I didn't have breast cancer like my mother has had twice. (English translation: DIEP Flap just means that they used my own body tissue for reconstruction and not implants)

The surgery was long and extremely tough but at the end of the day, worth it so I could just be here. As months went on with my healing I started exhibiting strange behavior. I would make dinner and then forget that I made dinner so I would make another dinner. I would constantly drop things and not be able to feel my hands at certain times. We went to a neurologist who quickly diagnosed me with RRMS or Relapsing Remitting Multtiple Sclerosis. We finally thought that we had a diagnosis for literally everything that was going on. If I didn't feel well, it was RRMS, if I was tired it was RRMS, if I had mobility problem it was RRMS. But almost like a 7 year itch that wasn't quite 7 years my body began having extreme pelvic pain. Between March and May 2024 I had at least a dozen ER visits for pain and those who know me know that I don't do pain medications as those were the demise of my sister... but this pain... I would take the pain meds, just in the ER because it felt like something was trying to burst out of my abdomen like in the movie "Aliens". I went back on the trail of specialist after specialist with procedure after procedure and we never found the source of my pain in my pelvis beyond Ovarian and Uterine cysts but this pain was beyond cysts and I just could not understand why I was in so much pain. I was welcomed into a study for pelvic pain and the best answer we got was that I may have damaged muscles in my pelvis in a car accident in October of 2023. During a procedure in May, we did get an answer that we were not expecting in my stomach that I am not quite ready to share yet but this issue occupied a good portion of my time this summer.

Dr. Evans knew that Justin and I were not going to stop until we had an answer so he sent us to a rheumatologist, the only doctor it felt like we havent seen. After a few appointments and blood work I finally have an official diagnosis, not a guess, an official "blood work says so" diagnosis. I have something called Hyper mobile Ehlers Danlos Syndrome as well as Lupus (LSE). It was explained to me that all of the diagnosis's that I had in the past may be just a guess from specialists that were grasping at anything to find a cause for my illnesses, which is both noble and heartbreaking at the same time. We are currently seeing if RRMS was even a proper diagnosis. It's horrible being treated for something you don't have, like lymphedema (that's an even longer story) just to keep feeling awful.

Ehlers Danlos Syndrome is a conective tissue and Collagen disorder in which your joints are hypermobile/ flexible and your body has to over compensate for over use of your muscles and joints. It can also affect your skin by making it stretchy as well as making injuries to the skin and body harder to heal. Patients with EDS can also experience bone dislocation much easier than others, physical deformity, heart murmur and easy bruising. In exteme cases, EDS patients can have tears in major arteries and organs. The markers for Ehlers Danlos are extreme flexibility, especially in your fingers and hands and can be diagnosed by physical examination and lab work.

Lupus, or the type I have, LSE, is an illness the occurs when the immune system attacks healthy organs and parts of your body during a flare. These may include; internal organs, muscles, joints, skin, blood cells as well as hair loss. Lupus represents a kind of allergic reaction by the body, in which the immune system sees the body's healthy organs as foreign. In layman's terms, your body just attacks itself for fun. Most people know lupus for the butterfly rash that developes on the cheeks and bridge of the nose during a flare. Flares can be caused by stress, illness, injury, exhaustion, poor diet, lack of sleep, alcohol, too much caffeine, change in weather... basically anything that the body may not like.

In non-medical terms, basically my body is kicking it's own butt almost constantly. As much as I don't love that I have both EDS and LSE, I am happy to have a diagnosis as well as a plan. For my Ehlers Danlos, I am currently doing physical therapy once a week, literally for the rest of my life. I have work on things like not standing with my legs locked in an arch as well as using my hands in ways that won't exhaust my muscles. For my lupus I am currently taking Paquinal, or Hydroxychloroquine... the medication Trump wanted everyone to take during Covid that sadly caused a decrease in supply for those who actually needed it. In it's basis, Hydroxychloroquine is used as an antimalarial medication as well as a chemotherapy drrug that causes things like nausea, vomiting and hair loss, which i am already experiencing... though EDS and LSE can also cause hair loss so long story short, my good hair days are over.

Life right now looks like taking things day by day and hour by hour until we find our new normal. I refuse to let EDS or LSE take away all of the joy in my life, so even on down days I am filling my heart with things and people that make me happy and I plan to keep going no matter what.