And It Begins

 6/21/2023 - WEDNESDAY

Today has not been one of the worst days of my life, probably not even in the top thousand.  But today I started thinking about how much longer I can do this.  Wake up and not know if I could walk, think or basically function.  A day stuck in bed, unable to move, tears falling off my old face.  Maybe it would be a good day.  A day I knew I had to check off a long to do list.  The list piles up when you are out for a week.

So I spoke with my friend Doug about the idea of disability.  I never wanted to be a burden on anyone or society.  When this illness started over thirty years ago I pivoted careers into one that would accommodate my illness at any moment - retail!

But I could not pivot on life.  Being unable to attend a simple lunch with friends or a life event like their wedding.  And when I did make it they had no idea how difficult it was for me.  I never wanted anyone to know.  

Covid was a blessing.  Being stuck at home for months at a time - bring it!

Thankfully, the world is springing back to like.  Unfortunately I have not.  I have canceled attending so many events this year.  I made plans.  Hotels reservations booked.  Friends to see.  Places to go.  All of them gone.

I bought a condo, beach adjacent, near good friends.  I have owned it for a year but have stayed less than a month.  If it were not for good friends Doug, Joe, Mark and Glenn taking in packages, putting together furniture, working with construction people I would be so behind in that to do list.  These are the kind of friends - when I made final payment on the condo they came to celebrate.  One wanted me to tell them all about my decorating plans for the bedroons.  What I did not know is the other three were busy putting food staples in my pantry and frig, adding essentials to my bathroom and placing plants on my new balcony.  I was overwhelmed with their kindness.

So when I spoke with Doug today about disability he prompted me on another path.  I need to book the surgery on my cyst again.  The same surgery that did not take five years ago.  I found a doctor but my time is always not my decision.  Just last week I was at the ER unable to breathe or lay flat.  But I must move on from my worry and schedule.  My doctor thinks this might solve the leg issues.  I can not even imagine!

I decided to start a blog and write down updates and memories for motivation.  I am not sure when I will share it.  I do not like the spotlight.  I have had some friends come out with their health problem crisis to tell me about their situations which has helped us both.  Not feeling alone is motivating.  

I am off to do work.  My fever broke about two hours ago from the constant cyst infection so I can think again.  

I did drink two Snapples tonight which angers me.  Tomorrow is another day and I will try to just drink water.  Ugh!