Wednesday, February 29, 2012
Alone we are rare, Together we are strong.
I have hesitated writing this post even though so many of you have asked for an update on my appointment last Friday with Dr. Brad Tinkle, the geneticist at Cincinnati Children's. It has taken me a few days to process all the information I was given. There is also a part of me that feels like when I type these things out loud it makes them more real or true than they already are. He confirmed the Ehlers Danlos Syndrome diagnosis I received from Dr. Henderson as well as diagnosing several other comorbid conditions including POTS and Mast Cell Activation Disorder. I cannot begin to tell you how it feels to have all these crazy symptoms for so long and finally have someone look you straight in your eyes and tell you they are REAL and connected.
Today is Rare Disease Day. I have a rare disease. It is chronic. It is systemic. It is painful. It is debilitating most days. I finally have a name for it and a group of specialists who are learning more and more every day about how to improve symptoms and quality of life for those of us who are suffering. Much of my appointment was spent talking about new medications I should add, current medications I need to wean off of and the other doctors I need to consult with to make a comprehensive plan for treatment. Most of this plan is on hold until after my tethered cord surgery on March 28th. Dr. Tinkle's exact words were, "This is going to be very hard." I smiled. I can do hard all day long.
I have a magnet with a quote on it that I have moved around with me since college. It has always reminded me that life is unfolding in perfect time and the answers to life questions will come when I am ready to live them and not a moment before. It is a little ironic I only have a tiny little dorm fridge now and my magnets are put away, but I know the Rilke words by heart.
"Have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer."
I have lived the questions. The answers were in many ways not available over a decade ago when I first became very sick. Truly, I never would have found this help without Danica's journey and the community of others who are walking similar paths. I had given up in almost every way of even talking about my suffering. Only those closest to me could see how affected I was every day by my crippling pain and fatigue as well as a myriad of other body symptoms. Over the rest of this week I plan to post each day about one of the rare diseases I have and tell in detail about my symptoms, how they affect my daily life and what we will try to accomplish through treatment. I know many of you read this blog for the high points or an emotional or spiritual take away and reading or listening about rare medical conditions is not up there on your list of things to do. I would ask if you have followed this blog for long and are continuing to pray for our family that you try to take in some of the information. Ehlers Danlos Syndrome is a highly undiagnosed disease. Often patients have been told for years they have fibromyalgia, chronic fatigue and myofascial pain syndrome or that they are just plain depressed or have panic attacks and mood disorders without understanding the total physiology causing widespread pain and a multitude of other symptoms. By spreading awareness I hope and pray even one person who is similarly sick and hurting or who knows someone who is reads this and begins to connect the dots and find the help I have waited so very long for.
Alone we are rare. Together we are strong.
By His Grace. Through His strength. Our hope remains!
Posted by Monica Kaye at 11:17 AM