The Good, The Bad, and The Utterly Stupid!

The Good

Let’s hope I run out of strenght before the end… Got to the hospital early and right away things were going good because I saw a good friend as a nurse! Nick, came to get me and took my vitals and got to catch up! He’s one of my favorites because we both LOVE Scrubs, the TV show. I ‘m so glad I got to see him today. That reminds me, he asked me to add “For All Mankind” to my watch list. Did that just now.

Things kept going really well meeting with the specialist right away. He then surprised me by letting me know what was scheduled. He got what he needed from me to again petitioned insurance for Spinraza. The next appointment was going to be with PT, and I was expecting it a few weeks later, but they had that set up next!

The PT did the evaluation needed again for insurance and cut off a month of more waiting! All of this accelerated the time line I was expecting. This now leaves everything up to insuranc, which brings us to…

The Bad

With the new year starting l now have to meet the deductible a d out-of-pocket total of $5,000! Once there insurance will cover almost everything. It’s insane that after paying so much extra on top of paying monthly, not everything is covered! Is insurance went to help or is it just made to take as much of your money as possible?

One way to whittle down the cost quick is with equipment I met with on from National Seating & Mobility. This dude we awesome! We have a plan to get a more maneuverable wheelchair, and more equipment for my place. I’ve had my s over chair since the late 90’s! It is falling apart on me! Ron showed me a new version that’s also portable! Traveling is a pain because it’s not guaranteed that I can use to bathroom. It’s a huge pain! Ron had great ideas and I can’t share them all with this post.

The Utterly Stupid!

I’m not sure how to go into this. It’s so frustrating. I’ve tried for a ng time to maintain my independence and autonomy. The one person I was to meet with was a social worker. The goal was to get help to find caregivers or ways to fund them. She was not able to make it, so she called me which was just fine.

I told her about my situation and what she had to tell me, was just… Ugh! Basically I need to depend on family and friends. In order to gain any form of help I need to give up all independence & autonomy! Things going against me is that I have a job, insurance, and not beign a citizen. It’s crazy, I need to give up what gives me my independence and then try to do something extremely hard. She even said I should look into living in a group home, or look into hospice! It was not a good conversation.

Basically, I will need to keep doing what I’ve been doing and figure it out.


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