So, last I left off I had just dropped the bombshell of my diagnoses of maybe RA and Hashimoto’s Thyroiditis, and who knows what all else. I can tell you the diagnosis part and dealing with more doctors has been the worst part of all of this – reliving each and every symptom and testing again and again … and again.  I have seen a rheumatologist twice now and taken enough x-rays that I feel like I am glowing in the dark with all the radiation. I think I maybe turning into my own nightlight.  I have also seen the Endocrinologist once and I will see her again next week.

What I have learned through nutrition research, Ayurveda information, common sense, a background in soft tissue research and education, and a LOT of community online forums is that what I am dealing with seems to be very typical of a LOT of women, I mean thousands. There are so many groups online just trying to support each other, offer suggestions on what is working for them, what their doctors have said, books, supplements and so on. I feel like I know these women. It is sort of like my twitter online kula of yoginis!  The love and support is genuine and flowing, as are the tears when they talk about experiences similar to my own – endless tests and misdiagnoses and the frustration of no one listening. They speak of a ton of symptoms and seem to have a huge commonality - no doctor has figured out what is going on.

There are commonalities of tests and all saying that something is causing their inflammation but no one seems to be able to get a grip on what is causing it or how to control it.  Some days the commonality seems to be low Vitamin D levels, so the answer we get is supplement.  What if the levels are still low after supplementation?  Echo…, echo…, echo…., then silence, enter crickets chirping. This is the same answer I got from my endocrinologist after I asked her the same thing about the synthetic hormone I am taking, Synthroid. This was also the same answer I got from my rheumatologist after we are now on my 5th NSAID drug that is supposed to be reducing my inflammation that isn’t touching it (or the pain) on good days let alone the bad days … by a long shot.  Clearly, we are in uncharted territory.

I have also learned (thanks to my online kula) that while the test that was positive this time, 6 months from now can be negative, or vice versa. It seems the overwhelming lesson behind all of this is about learning to manage whatever “this” is. I am thinking about naming it Fred or maybe something more exotic since no one has figured it out.  ”It”, until I come up with a better name, definitely has a personality all its own.

What I can tell you now after 2 years of living with “It” is that “It” is not a morning person, seems to need a LOT of sleep to have any energy what-so-ever (like more than 10 hours), doesn’t like meat, wheat, or dairy foods, and is incredibly temperamental.  ”It” likes to give you just enough rope to hang yourself by overdoing anything physical, but makes you crave physicality.  Maybe that is just the ego struggling with the death grip of “It.” Maybe it is what we are “supposed” to do. Who knows.  ”It” doesn’t have the energy to be around other people, much like a unsocial boyfriend when you are the life of the party.

So far the best description I can give you is that my life lately is like living between 2 panes of very, very thin glass that are already cracked. You just breathe normally, keep going and try to stay within the lines.

Since no better answers have emerged via science yet, I continue the search and learning processes, asking for guidance, listening for clues, and keep coming back to the mat … and my kulas.  I consult every few months with a friend who has incredible vision.  I have started a meditation practice since this last nasty flare up (on day 4 now) and I am working to reduce my stress. This is the hard part as surrender has never even been in my vocabulary let alone my practice. As I work through peeling the layers back, I am humbled by the grace and kindness I am shown by others, in places I would have least suspected it.

This is definitely a journey.

Thanks & Namaste!

-MM

How does your yoga practice help you when dealing with a health crisis? Have you found comfort in community and friends? If you have any experiences to share or if you’re looking for support right now, please post a comment below.

The author, Michele Mathiesen has spent 1/2 her life becoming a yogini & vegan and has been a body/energy-worker for the last 8 years.  She is an avid cook, traveler, and does dog rescue in her spare time. For more about Michele, visit her website Wildflower Path Yoga.

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