The story of Skyler
Lets, start from the beginning: I was born at 24 weeks gestation and spent the first 4 months of my life in the neontal intensive care unit (NICU). After being healthy enough for discharge, my family noticed that I was unusually flexbile – even for a baby. My skin was so fragile, had a velvet-like softness to it, and was so incredibly sensitive that I’d break out in a rash or hives randomly and no one knew why. As I got older they noticed even more unusual symptoms: spinal alignment issues (not scoliosis), joint hypermobility, retinal hemhorrage (cause still unknown), and more.
At 14 I developed a classic case of mononucleosis – but thats when my health went spiraling out of control. I developed symtoms ranging from syncope to tachycardia to chronic pain to shortness of breath to gastrointestinal issues. I became so ill I had to repeat my junior year of high school because I was in and out of the hospital the whole year. After years of countless testing, going from doctor to doctor, having numerous ER trips and hospital stays I finally got referred to a orthopedist who (after experiencing symptoms since infancy) dagnosed me with EDS type 3 (just a year before I got diagnosed with postural orthostatic tachycardia syndrome (not rare – but often goes hand in hand with EDS). Over the next year I was told I had a weakenedimmune system and was immunodeficient. We also learned that – after years of dealing with unexplained hives, allergies, flushing, gastrointestinal symptoms (among other symptoms) – that I might have mast cell activation syndrome (currently awaiting official diagnosis).
During a routine check up with my opthmatologist I was told I had acute angle-closure glaucoma and needed emergency lazer eye surgery (thankfully my glaucoma is in remission). I also – despite great dental hygiene and only having one cavity as a child – my teeth were in demineralizatoin and had to be removed. Unfortunately, due to having an abnormally small jaw (possibly related to EDS), getting the correct dentures fitted were very difficult so I only have tops that fit. Last June I passed out trying to get into our car and had an ankle injury. I thought that since I could walk on it – that it was just a sprain. Well, 3 days lster (after it becoming extremely swollen and bruised) I went for an x-ray and found out it was not only fractured, but dislocated. I realized that I had been walking on a broken and dislocated ankle. I also tore 2 ligaments as well. After looking at my x-rays my doctor noticed that the bones in my ankle were thin (and recently had a chest x-ray to rule out pneumonia and realized that the bones in my spine were thinning too). I was diagnosed with osteopenia. I have showed significant signs of craniocervical instability and am currently awating proper testing.Â
My symptoms of EDS may have started at infancy – but everyone thought it was just me being born so early or that it was just me being me. My symptoms got worse around age 11 (when I started puberty) and I didn’t get a diagnosed with EDS until I was 23. My symptoms of POTS (which isn’t rare – just rarely known) started at 14 and I didn’t get an official diagnosis until age 19. My symptoms of mast cell activation syndrome began at infancy – but no one questioned anything until I was 18 (still undiagnosed – awaiting proper testing). The loss of my teeth, the glaucoma, the osteopenia, the injures and torn ligaments, the dislocations/subluxations, among other medical conditoins and symptoms plagued me from age 10 until the present. I endured so many procedures and tests, went throug so many medication trials, had spent so much time in the ER or in the hospital, and sent to numerous doctors (up to 25 or more). Not only did I endure physical “torture” – but I suffered mentally and emotionally as well. I never got to experience the “normal’ teenage life. I never went to dances/prom. I never got invited to sleepovers or birthday parties. Due to my vision (legally blind since birth) I can’t drive. Due to my multiple disabilities I can’t work or attend college. I always wanted to be a therapist – but that dream is not doable. I currently receive a treatment for my POTS at an infusion center where I get IV saline through a port in my chest. I have to wear a mask in public due to me being immunicompromised (weakened immune system). I am curently (what my cardiologist calls) “partially” homebound and in a wheelchair.Â
However – despite all the appointments, medications/treatments, testing/procedures, and even mistreatment by doctors – I have came through it all still fighting. I may not have the life I want (or planned) to live – but I’m not going to let that slow me down. Yes, I have bad days and even worse days, but I still find some hope in each day. I hope one day that there is a cure for not only my list of conditions – but for all rare diseases. No one deserves the pain, the sadness, the isolation, the mistreatment of doctors. No one deserves what we go through – no matter the diagnosis. Sadly my dream of becoming a therapist is not achievable due to the severity of my chronic illnesses. But, when I do start college someday, I want to go into creative writing and study literature. I have been writing poetry as an outlet since I started this crazy journey to diagnosis. I have had several of my poems published already and was nominated for ancaward for the Dysautonomia Support Network’s Patient Choice Award’s 2019. Just realizing how much my poetry has touched peoples lives has reminded me that – while I may not always like the life I’m living – it doesn’t mean that my life doesn’t have purpose. I want my story and poetry shared because maybe – just maybe – it’ll touch someone and maybe impact their life in a positive way. My therapist has told me that I am fighting a battle most people wouldn’t be able to handle. I often tell her that I don’t have a choice. I have to fight not only for myself – but for those who have given up theirs. And, if my poems and/or story has touched or maybe even helped someone with their own journey – then it’s worth it.Â
Never give up hope.Â