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

For the disabled community: if you were building your dream home what would you put in it for accessibility?

I am so very lucky to be able to build a new home and put in all the things I need now and will need in the future. A wheelchair is most likely not too distant in the future for me.

On the plans I have adapted all doorways wider, all sinks accessible, my bathroom (walk in tub and vanity with space to roll up to), kitchen (microwave drawer, space to sit for food prep), ramps, tall toilets… what am I missing? What annoys you about your space? What do you wish you had to make life easier?

#Addison ’sdisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #MitochondrialDisease #Abunchofrarediseases #Asthma #MastCellActivationDisorder #Arthritis