Warning: Semi-rant ahead.
One of the things I really desired as I walked and blogged my way through this whole experience is to be authentic and to share what I'm learning, the good, the bad, and the ugly. So today I'm adding a bit to that transparency journey and sharing some of the practical rather than emotional parts of my walk. A bit of the ugly.
I have been blessed with good health most of my adult life and have not had to deal with navigating the labyrinthine chaos that is the medical referral system until now. I am grateful that we have good insurance, which, overall, has served us well. However, give them something that is slightly outside the box and they don't know what to do.
Just to update any of you who haven't heard the latest: symptoms and test results (lack of positives) have all led to a diagnosis of what has been called chronic fatigue syndrome in the past, but is more accurately known now as Systemic Exertion Intolerance Disease (SEID). See graphic and link below for further info.
Here begins my rant: It frustrates me that I am more knowledgeable (JUST based on internet research) about my condition than my experienced and educated primary care physician, who "can't do anything else for me." It frustrates me that no one specialty claims/treats/works with SEID. Diagnosis and "treatment" are often shunted over to Rheumatology, since SEID bears some similarities to fibromyalgia, which is treated under that umbrella. It frustrates me further that my the rheumatology department of my medical group won't take a referral concerning SEID. The referral department told me that if I come up with a doctor I want to see, just let them know and they'll give me the referral, but they don't know what direction to point me. The two SEID specialists in the area that I've been able to track down on my own are outside my medical group and won't accept me since they aren't part of my group. Seriously? Am I the only person in the greater Sacramento region within our medical group (one of the "big ones" in the area) who has had this disease? They've never come up against this before? It frustrates me a GREAT DEAL that there is no advocacy within our medical group for this condition (if I'm wrong about this, please let me know) and that the one with the illness is now responsible for trying to run down a doctor who will listen.
And yes, we are considering/working on changing medical groups at this point. Thankfully our insurance will allow that, however, we aren't guaranteed that the grass will be any greener on the other side of the managed care fence.
I know others who have dealt with this whole pantheon of medical frustration and I salute them. I further know this is just another step in my journey.
I am reading up on my condition and am learning to work toward being the healthiest version of myself I can given my condition.
I am blessed to have people in my life who are offering alternative solutions. I recently overhauled my eating habits (Whole30/paleo) at the encouragement of one of my dearest friends who was changing her own eating habits. I was gifted by my sweet cousin with a box of essential oils that I am trying as treatment for my symptoms, and have already seen some progress with pain management.
I am doing some yoga (short duration is all I can do) and taking vitamin supplements.
I am, most importantly, using the time I have with my drastically altered lifestyle to enjoy and appreciate my family and friends and reconnect with many of the things that are most important to me: time with God, creativity, reading, writing, occasional craftiness, and stillness.
For further info about CFS/SEID, check out this article (you have to scroll down a bit, past all the links):