A HUGE thanks to Des for her guest posts; I hope you all enjoyed them as much as I did. I hope to have her back and writing for us all again soon! I’m finally out of the fog from surgery and can type a little… one-handed and slow, but typing. Thank you for all of the well wishes and support here, on my Facebook page and Instagram.
After finding my amazing practitioner, Theresa Dowell, FNP, PT my outlook on chronic illness and living my life with it had drastically changed. She has shown me that life, really living life was still a possible thing. You see, she also suffers from chronic illness and is practicing to help others and be the change western medicine needs in order to properly help us. She travels to conferences, stays up to date with new and ongoing research to learn more specifically about the conditions for which she is so passionate. She is meeting with and helping to shed light on and educate local docs on certain topics as well. She is an inspiration to me and I’m sure many more, both colleagues and patients alike.
Through several more lengthy appointments, referrals to cardiology, neurology and a zillion blood tests, I was also diagnosed with Mast Cell Activation Syndrome/Disease, Ehlers Danlos and Chronic Re-activated EBV. We found that my body is literally making no ADH (anti-diuretic hormone) so I finally understood why no matter how much water I was drinking I was still chronically dehydrated. We found that my body still thought it was fighting EBV even though it’d been nearly 20 years since I’d had ‘mono’ as a teen. I also know now why in addition to the RA, Fibromyalgia, Raynaud’s, POTS, Reactive Airway Disease, Interstitial Cystitis etc etc etc my body still felt like it needed sleep around the clock. I learned more about each of these things and started understanding more of what it was going to take to keep my body working and moving forward.
She armed me with medical journals from pioneering doctors and researchers to help me understand and make informed decisions regarding my care. To help me understand how these all tie together and how in order to tackle them all we had to be more aggressive. (More aggressive than the diseases and ‘syndromes’ that were trying to take me down.) Once she’d pieced all of my puzzle pieces together she had a bigger, better treatment plan. One that, when I visited the neurologist blew him away and he only tweaked one thing (med) for my MCAS. Leaving his office I was again overwhelmed with gratitude that Theresa had been placed in my life to help me along on my journey to wellness. I was again renewed with hope and reminded of the inspiration she lends with her gifts as a wife, mother, chronic illness warrior and as a practitioner.
Here is the thing about her inspiration and really inspiration in general. It’s something I believe we are gifted with to help bring hope in dark moments on our journeys. It is to be used as a mental/emotional help. It is not however to be used as a measuring stick that we hold ourselves up against and eventually use to mentally beat ourselves. But how easy is it to do so? How many times have you read a post, seen a picture or heard of someone living with your illness and felt that joy or conversely shame? The spark of hope that you can be like them, you can and will do that thing they’re doing as well? Then only to turn it around on yourself on a hard day, in those dark moments and think to yourself, no…. no I won’t ever be able to do that…
This my friends is a lie. A lie we sometimes unfortunately believe and then carry on our already burdened shoulders. In that moment when you feel the spark of light and hope, I want you to tuck it away in your mind… DEEP down in your soul. Remember that we each have our own journey to travel and every.single.person on this earth has a purpose of our own. We are all valuable, we can all be change for our causes, we can all stand up to what’s trying to keep us down, we are all stronger than we think. Don’t measure yourself against anyone except you. I believe there is a purpose for you, for me, for every living thing. We were created with a purpose. But, we have to choose to find it and to use it for good.
People ask me often how I manage having 8 children and most don’t know of my health challenges either… (My response is usually: Well really God, but I quit working last June because my body couldn’t do it anymore and my husband helps SO much; we are an absolute team 100%!) Many say our foster and adopted children are so blessed to have us to take them in. It is we who are blessed to join them on their journeys. It is I who am lifted up by soothing a baby at 2am who suffers from the choices of her birth mother while she was pregnant. My body is but a vessel to be used for good. It may need to be patched and glued; it may need a surgeon’s hands to repair broken parts, but as long as my lungs have breath it will be used for good.
Friends, please don’t measure yourself against others. Instead arm yourself with knowledge, find support in communities of others suffering with like things and keep fighting. Be the voice for orphan diseases no one is concerned with curing, use your voice, your body and mind for good. Most importantly, keep finding inspiration that fills you up and helps you be the best you can be, one day at a time.
“It is under the greatest adversity that there exists the greatest potential for doing good, both for oneself and others.” – The Dalai Lama