Addison

Upon waking I am taken aback by grief some days. Life is always more good than bad, there is so much joy to be had, but there is also the grieving that is a part of that. The loss of what you thought your life would be and the time you would have are felt too. They are also a gift, I know I have less time and I don’t know what the future holds, so each day is a gift and each challenge an opportunity.

I have in my disease process had a lot of losses, but primarily physical. I know I won’t be able to do the physical things I do much longer and chronic pain is just my reality. This time I feel like I am losing myself, and I am, there is a mental decline and that scares me. As an acedemic my brain has been very important to me. I am losing memory, I am struggling to make decisions, my acuity is declining. I am losing myself, parts of what makes me, me. That terrifies me, but already I am adapting and learning new ways around it. We are hoping this is due to Parkinson’s, not my mitochondrial disease or another genetic condition… one has a treatment, the other does not. Never thought I would be wishing for Parkinson’s. 😂 No matter what it is I will adapt, I will figure it out and find my joy, but for now I will allow myself grieve.
#EhlersDanlosSyndrome #MastCellActivationDisorder #PosturalOrthostaticTachycardiaSyndrome #MitochondrialDisease #Addison ’sdisease #Asthma #CeliacDisease #PTSD #Abunchofrarediseases