We’ve all been somewhere, telling a story and that one person says,”Oh, I know someone who_________!” Am I right? Most of the time I just smile politely and think snarky things to myself when someone tells me they know someone with one of my conditions and how barley oat grass cured them or a gluten free diet, paleo diet etc etc etc…. The list goes on for MILES. Sometimes it’s maddening because the person doesn’t know my specific laundry list of diagnoses and that’s not their fault so I listen politely and then usually change the subject. Now, that being said I DO think any combination of those things can help us with auto-immune disease, POTS, EDS, MCAS etc but I do not believe any of those things at this time can cure them or at least can’t cure me. I’ve tried what feels like every supplement, every med, no meds, specific diet, I use essential oils every day and unfortunately my conditions just keep hanging on. There are definitely things that help me and things that make me worse. But nothing has brought 100% remission from all of my illnesses.
However, one winter afternoon I had taken two of our kiddos to the pediatrician’s office for illnesses that weren’t resolving. The doc heard what I had to say and we discussed treatment like every other appointment we’d had there over the years. Then, she asked me how I was doing? Whaaaaaat? “Um, I’m fine. I’m just tired and having kind of an off day I guess,” I said not wanting to dive into that list and explain which ones were dragging me down that day. But she asked me a little more so I ended up telling her my current diagnoses and how my rheumatologist had retired and the new guy didn’t believe in Fibromyalgia and so I had no one to treat that and it wasn’t going well in general. Little did I know, this time when someone said to me… OH, I know someone…. it would change my life and my journey to wellness forever.
She told me there was a new practitioner who was just opening a practice and she specialized in Chronic Fatigue, Fibromyalgia and some other diseases that most docs in our small town won’t touch or don’t believe are actual illnesses. To say I was skeptical was an understatement but I waited patiently (with my crying, miserable toddlers in hand) for her to find her card and give it to me. I had it for a couple of days before I called. I was so tired of doctors telling me Fibro is in my head, or my personal favorite it’s truly in your head and you can control it because it’s an autonomic response… you just have to retrain your brain and build new neural pathways and you won’t have those sensations anymore. (SMH) But I called and got an appointment with her. She said I needed to plan at least two hours for my initial appointment. (Holy cow… I have to miss work already and now more time???) But, I scheduled and got the time off and went into an appointment that changed my life.
She actually started at the beginning of everything, my life, my childhood, had I had any trauma? Why yes, yes I have and to recount my trauma alone puts me in a giant flare but we did it. Then, medical history, have you had babies, miscarriages, surgeries, cancer, other diagnoses? Why yes… I have had all of those. The details and the depth in which she took my history was astonishing. I’ve never had a practitioner even look at my forms that thoroughly much less ask me about them. There was only one form for her, the rest she personally took down and we discussed everything in detail. You see SHE GETS IT! She gets that our bodies are one functioning operating system and each trauma, each life event changes that operating system. Our bodies are not easily broken into specialties because it operates as a whole and the diseases she treats are not single system diseases. They’re whole body, whole system chronic illnesses. She gets is, she got me, she heard ME.
I left her office with a detailed plan to try and get my fibro back under control and with another diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS). While I was not thrilled about another diagnosis, having a name for something I had been silently battling since I was a kid was a relief. Knowing that my heart racing and random fainting spells weren’t in my head, it wasn’t my PTSD, it wasn’t me being dramatic and I wasn’t crazy. It was the first time a diagnosis helped me understand more about myself. Having a plan was a surprising relief…. My pediatrician knew someone and that someone has helped me more than any other practitioner has before and since. She was a right turn down a new path with a clear plan to continue on my journey to wellness.
The next day we got a call that a baby girl needed to be placed and our family grew overnight from 7 to 8. We were so happy to have her, (and still are!) but I couldn’t help but wonder how much more my body could handle.
Have you been in that place; having a plan and trying to get back to your working baseline and then everything turns upside down in an instant? How did you handle it? What kind of things do you do? Do you have faith, go on a self education bender, turn to a community of others with similar diagnoses? What works for you? How do you keep going through the hard times?
If you have POTS or any Disautonomia diagnoses there are TONS of websites and educational resources out there. One of my favorites is Disautonomia International.