Saga of a Professional Patient
I’ve taken some time to process things since seeing a doctor on Monday. Part of decompressing is writing for me. If I’m honest I didn’t want to share about my feet initially - mostly because feet gross me out - like I’m not posting a photo I just can’t bring myself to. I’ll instead describe the symptoms as being like little trigger point bruising along the ball of my foot to the outside of the foot. Over the last few days, the toes, arch and heals have gotten a few what I’m referring to as “bruises” that are very painful to the touch. Not only do I find feet to be gross and odd to discuss socially but it’s embarrassing. I’m a hygienic person and all but what if this was like something gross? How embarrassing would it have been if this was some fungus - not cute. But TG that’s not the case, Bless Up? I’m also in the middle of training, 300 hours into my 600 classical Pilates education program. So, you can imagine why it’s kind of embarrassing that a (perspective) Pilates instructor would, like, not be able to walk. But here we are. Hire me? (I’ll get back to the silver-lining here in a later blog.)
Part of why I decided to make this a blog, despite being embarrassed to talk about feet in any detail is because it provides insight into living with chronic illness and the way a symptom most people wouldn’t pay much attention to snow balls into a rabbit hole of testing, doctor appointments, sleepless nights and feeling generally hopeless because no one has answers. Normally, I would sink into isolation and embarrassment of my odd symptoms and slow lifestyle but that feels like all the more reason to make these parts of life with invisible illness visible.
So, here’s the long of it, if you watch my IG stories then you saw me wake up Friday AM and not be able to walk. I explained that I had slight tenderness in my feet when I woke up the night prior to use the bathroom but still worked out without discomfort and didn’t have any real issues. Suddenly, Friday AM it was so painful to walk that I literally was limping if not crawling around my house (walking has been made possible by a fresh pair of Uggs and thick socks). I went and had some foot reflexology, cryotherapy and foot massage done Friday afternoon at Laya Center. The Massage Therapist told me she had never seen anything like this. The girls at my studio (occupational/physical therapists, movement specialists) were also pretty perplexed. After calling about ten offices and then waiting through the weekend to be seen, I stumped another doctor (podiatrist) Monday. With little answers, he referred me to a new primary care physician, that can’t fit me in until March, who will likely refer me to another doctor and then another doctor and so on. (sigh, simultaneous eye roll, palm to head)
The podiatrist referred me to this doctor because he's had two other patients with vEDS, who had similar- but not identical symptoms. He believes the “bruises” under my feet and the pain is related to or a symptom of vEDS, or Vascular Ehlers Danlos Syndrome. The thought is that there are arterial ruptures or increased nerve pain and sensitivity but the doctor was just speculating. People with EDS generally have chronic pain at all times and therefore registering pain from an injury isn’t always immediate. I have bunions, due to hypermobility and generally have pain in my feet that I don’t register or notice. This hypothesis could be totally off base; it could be a vitamin deficiency, a delayed detox reaction or even potentially an autoimmune or rheumatic symptom. This entire last year has felt a lot like piecing together a puzzle of unexplained life-long symptoms and oddities. The end picture isn’t clear yet, but it’s starting to resemble something recognizable. AHA! moments on the daily, small victories, some answers but mostly more questions.
I'm a little shook because vEDS is kind of scary from what I have researched and this is now another serious symptom I'm having related to EDS since being diagnosed on site. Diagnosing on-site is actually normal for EDS, even though it sounded sketchy to me at first. According to raredisease.gov, “A diagnosis of vascular Ehlers-Danlos syndrome is typically based on the presence of characteristic signs and symptoms. Genetic testing for a change (mutation) in the COL3A1 gene (usually) or the COL1A1 gene (rarely) can be ordered to confirm the diagnosis. “ So let me explain what an on-site diagnosis is. Basically it is the Beighton Scoring Scale System. This system measures joint hypermobility on a 9-point scale. Including;
- knuckle of the little/fifith/pink fingers
-Base of the thumb
Below are some photos (By: Ruthie Stark Photography) of me demonstrating my hypermobility, similar stretches that I was asked to show during my on-site diagnosis.
The reason why vEDS takes me off guard is because a couple years ago I had to have a TEE or Transesophageal echocardiography done, which was negative. When I was still under my previous neurologist’s care, I was prescribed DHE, or dihydroergotamine mesylate. I was required to take a ‘drug vacation’ every 6 months and get routine testing done, including an echocardiogram, or echo. One of my echos was suspect and prompted the physician to do a “bubble test” to detect a hole in the heart. To my surprise, the bubble test was positive. This supposedly meant that I had a hole in my heart. A hole in my heart could explain chronic migraine. I was terrified at the idea of having heart surgery but I also was hopeful at having an answer to explain everything. My mom was certain this was the answer because a friend of hers had a daughter who had migraine for years and had a similar story to mine that was “cured” when they diagnosed her with a hole in the heart and she had surgery to repair the hole. In fact, my mom connected to me to her, we talked on the phone for hours and my hopes were getting higher. Paul took me in for a TEE, which required me to fast and be put under a twilight anesthetic. The TEE was negative, no hole in the heart. After throwing tons of time and money at all these tests and medications, I was back to square one. I followed up with my doctor and thought I was done with the rabbit hole of tests that echo sent us down. So when I was diagnosed with EDS, I didn’t really see the value in paying the thousands of dollars to do genetic counseling mostly because it didn’t sound like a “proper diagnosis” changed the outcome of anything. There isn’t a set course you take upon diagnosis, the steps aren’t clear. I started doing Physical Therapy, Pilates and changed my diet to support my body in managing EDS and I seemed to be getting along just fine. Honestly, I am also pretty skeptical when it comes to medicine in general. I have had my hopes toyed with and so many let downs, like the story above that have left me kind of jaded. Whenever a new diagnosis, medicine, doctor, test, treatment, etc comes along, I find myself pretty resistant to it. I’ve intentionally taken some time to myself, away from medical shit, as much as I could. My feet are kind of the only reason I am really forced back into this world again. As much as I want to continue to take some time to not deal with this, I've given myself a break and I’m ready to put my detective hat back on and get to bottom of this - which means a lot more appointments than I planned on in 2019, and I am learning to be okay with that. It's amazing how I meet my deductible within the first month of every new year 🙈 #professionalpatient. More appointments mean more deep breathing, trusting that my path is unfolding perfectly according to a greater plan and embracing all of the uncertainty of my life with invisible illness.
The way the last week unfolded caused me to revert and to isolate. In part because I have been knee deep in scheduling doctor appointments, organizing myself as a patient and doing some heavy research but also because I sometimes take time to myself like this intentionally when I am upset. Part of living intentionally is being mindful of my mood and supporting my emotions. When I can control it, I choose not to be around people when I’m upset, especially about medial stuff, because I am not myself or the self I want to be. It always means a lot when people reach out and want updates and I do this privately in person with friends or via DM. It’s nothing short of incredible how much lighter I feel when I can grab coffee with a friend and vent - the more I do this, the more I realize the value in sharing. So, I felt sharing here made sense and helps explain how crazy weird life with chronic illness can be. How one day your active AF and bed ridden by debilitating pain the next. You literally learn that health is wealth and to never take for granted or undervalue being healthy, having low or no pain and living life to the fullest. I was feeling sorta “stuck” the last few months of 2018. I have the urge to make some leaps but still a lot of reasons why, or excuses for why I can’t (won’t). Then the first week or 2019, I wake up and literally can’t walk. Suddenly those dance classes I always skip, and those walks I don’t take feel more urgent and like less of a to-do. Wake up call received, universe - can I walk again pleaz?!
Comment below with questions, you want follow up on and let me know if you prefer blogs or videos for explaining medical happenings! Thank you for reading and for caring, XOXO!