Flying Solo

We are right at our 3 week point. Crazy how life changes in an instant. Knock on wood we’ve remained healthy so hopefully our efforts are paying off.

Each day brings new emotions and challenges but we end each day laughing so it feels like we've won. But the week has also brought new fears and realizations.  First when my son tripped and fell last week and my mind spiraled--realizing there is no hospital or doctor's office we can safely enter.

When you have a rare chronic disease - medical professionals and hospitals are your normal.  There is hardly ever a month without a few doctor appointments and the need for hospitals remains unpredictable at best. You never want to go to them but truth be told there is tremendous comfort in knowing they are there when your body demands it. Thankfully, after a few calls to his team and ice we moved beyond this without issue. 

A few days later I had my own check ins with our allergist and nutritionist.  Again the theme of both conversations were - stay stable- don’t add  food or meds - stay out of the ER and be as healthy as can be. We can't risk anything that may require help from outside the walls of my house.

 I normally always have a plan- I like to know in a worst case scenario this is what we would do.  When the world is living its own worst case scenario though-you don't get to have one. My doctor said the plan is don't need an ER.

Then Wednesday - one of the most widely used mast cell medications which blocks the histamine 2 receptor is pulled off the market- studies show it causes cancer. I know thousands of people in a panic right now- none of us concerned about cancer but about falling totally apart without it- at the start of pollen season in the middle of a pandemic. The preferred alternative they suggest you switch to-  I’ve already passed out on the floor of my doctor’s office from - so I now await direction. I am grateful I filled an extra month of the recalled medicine since it buys me some time. You see- I can’t try new medications at home alone. My track record is bad and my propensity to react is way too high - so what does one do when you can’t leave your house?   Seems I’ll soon be failing my directive to stay stable. My nutritionist wrote me back after my frantic email - "the timing of this could not be any worse."  I couldn't agree more!

I’m still shocked by the number of people not taking this seriously. Who are not staying home - or social distancing. How hard is this to do?  What on earth are they thinking? These people are delaying the end to this quarantine. We all need it to end but rare chronic disease patients really really need their safety nets back. We should not have to feel scared to get help -and we know the potential covid exposure will be worse then just suffering through our reality.  Like all my fellow warriors - we are used to riding the roller coaster of rare disease life- but never without our care team by our side.

I have 46 days and counting before I run out of my medicine and I risk a backwards slide-  So please please please - stay the **** home ...not next week - not tomorrow-  now.