October 8, 2020

I spoke with someone from Restorative Therapies regarding a quote for a new bike.  She was extremely nice with not so great news.  To get something like I have now would be around $25,000.  I am thinking maybe I need to have someone come in from RTI to look at the one I currently have instead.  See if maybe there is some work that could be done to fix the things that are wrong.  I would have to do one hell of a fundraiser to afford a new one or any other type of equipment.  I ride it every day and benefit greatly from it.  I sure hope mine does not break down for a long time.  I was lucky enough to have so many people donate for me to have the things that I do.    

Some of the stuff that goes on once you enter a nursing home is unbelievable. 

To start, they get basically all my money from disability every month.  I believe I get $35.00/mo.

 My nurse aides are allowed cut my fingernails but not my toenails.  I spoke with the podiatrist today and she said I can get my name on the schedule to have mine cut, but it is going to be every two months.  Two months?  Wow.  That is only going to set me up to get ingrown toenails, which is something SCI people are prone to get due to not being mobile.  I understand nobody wants an ingrown toenail, I get it, but it raises a person with the spinal cord injury blood pressure, gives us spasms and can affect our bodies in other negative and dangerous ways (Autonomic Dysreflexia).  I feel like when I tell people things like this, they think I am overreacting.  It is just something else a typical facility does not understand because out of their patients, very few have spinal cord injuries.  There needs to be a SCI nursing home with doctors and staff that understand what all the injury entails.  If I ever win the lottery I know what I would invest in!  I guess you need to play to win!  Not something I do but maybe I should start!

Just something in general that is a weird to me – my appointments get scheduled for me.  So if I have a dentist appointment on Tuesday, I wouldn’t find out until Monday sometime.  Which is a great example because I need to see the dentist because of some pain.  I let someone know and they were going to pass along to the dentist but now I do not know what is happening, when the appointment might be, etc.  and if I ask again, I just feel like I am annoying people.  My mouth is bothering me and I have to sit here, literally (ha ha) and hope it is sometime soon.  I miss making my own schedule and knowing what is happening when.  To me it is weird because I’m 38, not 88.

To top it all off, we are still being quarantined.  I have not seen my family or friends since February.  Almost eight months ago.  I have seen my girlfriend one time, when I was hospitalized, which I do not remember due to confusion.  All things I have talked about, so I am sorry for being repetitive, but unfortunately this is my life right now.  I just miss my people.

Hope all of you are hanging in there and surviving this mess.  As always, thank you for reading.  I appreciate your interest!