Admittedly I’ve been off my site or any kind of creative outlet for quite some time. I’ve been struggling physically, emotionally , just every ounce of me is completely taxed to where I’ve been stuck in survival mode. There are things that I’ve experienced, survived ,conquered and made it my bitch. Due to the unpredictable and hard to understand nature of Ehlers Danlos I’ve had a total of three near death experiences, I should’ve taken multiple dirt naps years ago. I’ve had more surgeries, hospitalizations and ER trips combined than birthdays. I’m well versed and knowledgeable in multiple medical topics and terminology is not lost on me. Although some providers sometimes see this as an overzealous anxiety fed by Wed MD. I call it survival of the fittest. I’ve made due with heart, lung, brain and kidney defects as well as unpredictable asthma and allergic reactions. I’ve come to the realization that maybe the hysterectomy I had over a year and a half ago took a lot more out of me than I expected. Maybe that was just the catalyst to the POTS attacks, the crippling fatigue and brain fog. A year and a half has been stolen from me to the point there’s days I don’t remember what I was like before the surgery.
Yes I understood that the hysterectomy was going to be emotionally challenging to deal with at 31 yrs old, but after the pathology gave a definitive diagnosis of adenomyosis , it became easier for me to accept that it was a necessary evil. It feels like I’ve been waiting ever since to wake up and everything just go back to normal. Except it hasn’t. I’ve traded in the physical pain caused from the uterus of doom to a feeling of endless wandering, a feeling of not being able to accomplish anything or do anything constructive. I’ve blamed everything on either ADHD, anxiety or depression. I’ve done everything from going to cognitive behavioral therapy, switching primary care doctors, trying new meds and supplements. I’ve been back tracking to find my compass, but at this point I don’t know that I’d recognize it even if I tripped over it.
I know I haven’t been on my A game in a long time, I feel like when you get stuck in a rut you don’t even realize that you’ve been stuck for so long because life doesn’t wait for anyone, and your days turn into weeks, which turn into months. It’s hard to find focus when you don’t know what you’re supposed to be focusing on. Once in a while life will step in and smash you in the face with a frying pan full of “pay attention McFly” to get you on the right track.
My 6 year old baby girl is my wake up call. After being diagnosed with Ehlers Danlos Syndrome on her 2nd birthday in June 2011 I have become well versed on most aspects of the disorder. I’ve seen somethings in her that are characteristic of EDS but luckily so far she had escaped any major injuries or implications and I was happy enough believing she had escaped the genetic burden that I was stuck with. But, in typical EDS fashion nothing is subtle, and over the past three months she has developed bladder spasms, joint pain, difficulty walking long distances and debilitating fatigue. If it walks like a duck, talks like a duck, it’s not a unicorn…..
It’s hard to maintain the fine balance of coming off as a respectful, knowledgeable patient with concerns with her child and being seen as an over bearing, hyper vigilant hypochondriac. I have a rare, poorly understood & treated genetic condition that is autosomal dominant that I’ve had over three decades of becoming familiar with. I also know my child and when something isn’t right. It hurts my heart that she can not tolerate walking in stores , participating in walking field trips or has to have warm baths and foot rubs after school because her 6 year old body hurts. A child shouldn’t have to know that kind of dragging pain. It’s infuriating to me because its an invisible anomaly, so if you’re able to climb the hurdle of accepting it your self then you are tasked with getting others (medical professionals included) to respect and understand what you are going through. It’s hard to treat something you can’t see. If doctors can’t get a handle on it how does a 6 year old?
I’ve began the process of trying to get her seen by the genetic specialists at Children’s Hospital in Boston, and the earliest they can see her is March 1st. That’s four months of trying to guess at what I can do to help my daughter. I called her local pediatrician back to update them on my attempts to get her seen (I do not need a referral with my insurance) and asked them what to do about her bladder spasms that have been plaguing her since the summer as well as voiced my concern over her increased fatigue and lack of appetite after school. I was told I’d get a call back, which I did, from the secretary. I was told I needed to make an appointment with Dr. M (not the usual Dr she see’s in the office, usually its NP de jour) for my daughter’s “sleep problems” …. sleep problems … SLEEP PROBLEMS ?!?!?!?
My tone shifted into level 5 bitch mode as I attempted to convey the importance of the symptoms as a whole that is very likely related to a genetic disorder that I have, and it is not merely a “sleep problem”. I’m so tired of being told to come in to see which ever doctor is available for symptom after symptom that is quite obviously part of a bigger problem that can not be resolved through a pee test . I’m sorry if I came off as a giant @$$hole, but when you deal with a complicated medical issue your entire life and start seeing this same progression in your own child , something beyond the usual doctor’s appointment shuffle needs to be done.
I’m tired of the captain obvious questions:
“Is she going to be at the right time/ sleeping through the night”
“Is she eating a balanced diet”
“It’s probably a phase”
“She might be doing this for attention”
No. Just no.
A 6 year old doesn’t apologize for going to the bathroom every 5 minutes at Disney when they’re trying to get through one sit down meal or ride without planning it around where the nearest toilet is. 6 year old’s just want to enjoy Disney World.
So even though I quite obviously have been failing at getting my own shit together , that is not an option for my daughter. There is no one else in this world that knows better than me what she’s going through. She doesn’t have to go through what I did, she can have a better quality of life than me, and I’m going to make sure that happens.
If you have time to kill and would like some knowledge dropped on you, Dr.Brad Tinkle is the leading EDS Dr (yes I know an unfortunate name but get your giggles out because he is a god send)