seriously lucky
Well a lot has transpired over the last week or so and I have failed to write on any of the events that are significant to me.
ONE: Last week was Eating Disorders Awareness Week.
I might not have written, but I certainly did a lot of reflection. I really gave myself a lot of time and space to process all that has transpired over the last 14 months. Actually, it’s more than that. With the exception of two 2-3 week breaks, I was in eating disorder treatment for 17 months straight. June 2022—October 2023. I hit all levels of care (most more than once) including inpatient, residential, partial hospitalization program (PHP), and virtual intensive outpatient program (VIOP). Eating disorder treatment has completely dominated my entire life for over a year. And now I’m in the next phase of things.
It’s hard to go from an environment where you completely surrender every single aspect of your life to one of freedom. I’ve been doing the treatment thing for many many years now. But I can honestly say that this last stint was life-changing. I was blessed with incredible treatment teams that made a lasting impact on my life. I discovered hard truths about myself and the choices I have made in my life. I realized that every day I have the opportunity to choose differently. Hour by hour, minute by minute, second by second I get to pick where I go. I have so much more power than I ever realized. And I’m not just talking about whether or not I decide to act on eating disorder behaviors. I mean EVERYTHING. There is a WHOLE WORLD out there that I had all but abandoned.
I had very nearly surrendered my life to darkness, misery, sickness, and hopelessness. But I have—repeatedly—for years now—picked up the phone and made the call for help. I scheduled a level of care assessment. I answered the difficult questions. I purchased a plane ticket. I overcame my fear of not knowing how to summon an Uber or where I was going in a new and scary city. All to get myself the help I needed. If I’m willing to do all of those challenging things to get myself to treatment, than I should be able to take the difficult steps towards the next phase of my recovery.
I have been out of treatment for 4 months now and I feel…different than I have in the past. I don’t feel like I’m heading down the same old path, destined to land myself in yet another treatment center. I have no idea what’s next for me. I just know that my eating disorder is no longer welcome in my present or my future. I have lost far too much of my past—of my life—to let it steal away any more.
So I’m thankful for the past 20ish months. I have come to know myself deeply. I went through darkness, pain, paralyzing fear, and monotonous days that I truly thouht would destroy me. Sometimes physically, sometimes mentally and emotionally. But those times opened my eyes to the joy that is simply life outside of treatment. Freedom and the opportunity to find a purpose and a life worth living.
My view from the ERC apartment in Chicago: June 2022.
TWO: Last Thursday was also Rare Disease Day due to it being the rarest day…February 29th…Leap Day…the Day of the Zebra!
I have a “rare disease” called Ehlers-Danlos Syndrome. EDS affects the connective tissue in your body: skin, joints, and blood vessels. There are several different types and the types vary in severity. There are also many co-occurinng conditions that present along with EDS in some patients (POTS, MCAS, etc). My personal symptoms include overly flexible joints, stretchy/fragile/translucent skin, and other random things. It explains why I’m so easily injured, why wounds take so long to heal, and why I’m always finding massive bruises in random areas of my body.
I’m actually of the belief that EDS is far more prevalent than we might have believed several years ago. I have met a good number of people who also have EDS with varying presentations. Providers are slightly more knowledgeable of the condition than they were even 5-10 years ago. Unfortunately access to providers who are equipped to diagnose and truly HELP is extremely limited. I have been on the waiting list to see a geneticist for over a year now and they still have to idea when my name will float to the top of the waitlist.
So I do what I can on my own and limit those things that make my condition worse. My biggest problem has obviously been my hips. I’ve had many surgeries on both hips over the years. Repeatedly experiencing the same injuries. I have recently noticed that my fingers bend in terrible ways that are starting to impact my ability to perform certain tasks. So I did some research and found a website that sells custom swan neck splints for the joints in your fingers. I ordered a few to try out and we’ll see if I experience any improvement. Right now—for me—EDS is about educating myself as much as possible and setting myself up for success by finding providers and tools that will help me to reduce pain and injury in my daily life.
So excited to try my new swan neck splints from Zebra Splints!
THREE: Yesterday was Skylar’s 14th Birthday and it was so so sweet to get to spend the day with her.
Unfortunately, I spent her 12th and 13th birthdays in treatment centers so getting to be fully present, take in the moment, and celebrate one amazing kid was such and incredible gift. I made sure to really soak up the day and the blessing that she is to myself, our family, her friends, her school, her Girl Scout Troop, and honestly to the entire world. She is amazing in so many ways. She is kind, caring, smart, funny, and just generally brightens up any room. I can’t believe she starts HIGH SCHOOL in the fall and I’m excited for her to have new experiences and opportunities. I have seen her grow SO MUCH over the years (in both height and personality) and she continually surprises and amazes me. I consider myself one lucky mama :)
Dad took a picture of me and Skylar yesterday to commemorate the occasion :)
Hmm. That was a little bit longer than I intended. But it’s been an eventful week and I have a lot to say. I guess the gist is the fact that I am seriously lucky. I’m lucky that my eating disorder didn’t kill me this year. I’m lucky that I have people who didn’t give up on me and who walked with me towards recovery. I’m lucky that I’m finally free enough to be able to focus on other aspects of my health. I’m lucky that I’ve had the resources to treat the conditions that have been caused by EDS over the years. I’m lucky that I have access to information and support to help me navigate my diagnoses. And I’m lucky to have a really amazing and loving kid. I’m lucky that we’re both alive and thriving. And I’ll never ever take any of this for granted.