Well, it is that time of year again where dates are flying towards me and reminding me of the first days, weeks and months of this new life of mine. It is a time of reflection and admittedly, sadness. Although one is not able to conjure up the feeling of physical pain they once experienced, it is quite easy for me to re-feel all the terrifying things I’ve felt in an almost uncontrollable rush.
It bothers me, still, how emotional I can get about my health. But, despite all the improvements I’ve made over the last two years, every day is still a struggle. And to know that one can improve by the leaps and bounds, beyond anyone’s expectations, and yet still have to struggle to do the most basic things in life…for the rest of my life…is daunting. The fears that I had two years ago for myself and for my family have not diminished. Although I don’t feel I’m in as imminent danger as I once did…I continue to feel that imminent danger could come to me at any time. This is not an easy space to move around the world in. However, for me to forget it would make it more likely to occur due to the carelessness that would follow.
I share all this only to shed light on the truth of my emotional juxtaposition. I am both a positive person and a realist. I am motivated and exhausted. I am joyful and sad. I am confident and scared. I am composed and anxious. I have hope and despair. I am extremely happy and still pissed off. The love for and from my husband, my children, my family, my friends can not be underestimated in what keeps me pushing myself to do more, be more, want more, fight more.
Last year I wrote a detailed timeline of the upcoming dates, which can be found here: https://relativelyunscathed.me/2015/10/14/a-month-of-remembrances/
This year, I’d like briefly breakdown the timeline of the last couple years as how I have defined them in my mind.
2014
September – October: Noticeable Symptoms
October – November: Diagnosis, Mayo Clinic, Treatment Plan
December: Supplemental Oxygen
2015
January – June: In Home Assistance and Tapering and Withdrawals of Prednisone
July – December: Decreased Oxygen Use and “Stabilization”
2016
January – June: Random Medical Struggles – Muscle Testing and Treatment Plan
July – August: Unexpected Improvement with the Realization that Supplemental Oxygen is No Longer Required
September – October: Abilities Testing and Accomplishments 2 Years in Waiting
October and Beyond: What I hope for moving forward—from this two year mark— is that I can stop for as long as possible, marking my life by my health milestones (and setbacks). I’ve already put in place a rule that I’m only scheduling doctors in September and March unless it is an urgent matter. I am starting a peer-led support group for those with chronic illness starting this November. I hope I can continue pushing the boundaries of my physical and mental thresholds. I hope that, although not a day goes by that I don’t feel the struggle and reminder of my limitations, that I can continue on my current path of living as close to a normal life as I can muster.
To all those that have loved me, encouraged me, helped me, listened to me, put up with me in all the ways that have been necessary, and just generally been there for me and my family over the last two years I can’t even begin to express my gratitude. Thank You!
