Thursday, July 5, 2018

Health Status Update: 4th of July; #2ndCivilWarLetters πŸ’₯ From the Flagler Substation in Palm Beach, Florida πŸ‡ΊπŸ‡Έ



July 5, 2018 


I'm writing to you from my new phone since coverage has been spotty and went out completely for the last 36-72 hours leaving me unable to communicate with my loved ones and the people helping me recover to my former self physically and mentally before this battle started back in December of 2017. 


I couldn't make or receive calls or iMessage for about 24-48 hours. That was without WiFi which of course went down as well.  


I have UNPLUGGED all my devices and put my new phone onto WiFi w Comcast. I seem to be able to make and receive incoming and outgoing calls again. 


I added AT&T service to my iPad which I think is only about $14.99 per month. I am in a bit of distress to say the least and being the internet is really my only lifeline. 


Literally. 


Keep in mind that I am in the process of downloading and updating over 109,000 photos and videos to my new devices. Dating back to 2009 so this initial data overage is probably due in large part to that. 


It seems I can send and receive texts again which is good because as you know, I'm not very good verbally when I'm under stress or in pain. 


I have to go to Good Sam tomorrow for PT and my OT and home healthcare were denied twice now. 


This only came to my attention on Tuesday at 5:30 pm and I have been in an total panic since then. 


I'm calm now but only but it took a lot of meds to to get there and I spoke to Manzano's office, nurse, nurse practitioner and a gazillion and one other people at least seven times since Monday. 


I have pain management on the 11th and they can literally see the muscle spasms in my right trapezius swelling to the naked eye. 


They still haven't authorized MRI for my lumbar spasms and stenosis or my ankle and Deltor is NO help. 


I also need a new, competent psychiatrist because mine is completely incompetent. He literally spends less than four minutes with me and doesn't even ask how I'm doing or look me in the eyes. 


That is after a 6 hour wait in his waiting room which is like One Flew Over The Cuckoos Nest which doesn't give me much confidence in his abilities. 


I drafted a response to Rita regarding Medicare but could not send it because I was totally offline. 


I have contacted the Florida Disability Advocates but I'm so overwhelmed and unable to type or fill out forms or paperwork correctly due to changes signal damage and lack of dexterity and fine motor control in my hands. 


On the bright side, my hands are doing much better for the most part but my legs have really taken a hit since we last talked when I fell twice and couldn't wet the bed. 


Haven't had any more accidents but grandma has spent hours on the phone potty training me all over again. 


I don't think this is permanent I do think I'm improving but it has been explained to me that my recovery won't be linear and I will have ups and downs. 


I'm very unhappy with PT and OT at Good Sam so perhaps I should go back to Delray for rehab since my authorization has already expired. 


I'm sure Manzano can send over a new referral within a few days. 


Transportation has been very sketchy since they often don't show up or take me to the wrong place so I've been using Lyft which has been superb since Uber won't accept or refund the gift cards I purchased and received.


I will be canceling my bank card momentarily since they haven't gotten back to me after I reported hundreds of dollars in unauthorized charges. 


This will be problematic for me for a few weeks so I will look into Amazon gift cards or Apple Pay since my PayPal is frozen and that will cut me off from any disposable income such as Lyft or medical supplies (Tylenol; Medication; Tampons; etc.) 


I went to the Trump rally last Saturday with my friend Lisa who let me borrow her husband's wheelchair but I was only capable of going one way over the bridge to Mar-a-Lago since it was too difficult to hold my feet up from the pavement. 


I'll leave it here for now because I'm starving and need to call Jillian to confirm a new healthcare aide for this afternoon. 


I'm a mess. Will try to put in a Publix order since I will ask the new aide to make me sandwiches and fix my hair and and ice packs for me until I see Grandma on the 10th. 


Time for some anxiety meds. I'll update you later on once this wave of pain and anxiety passes. 


I have five more minutes before my bone stimulator therapy is done for the day. And that is connected to my phone through Bluetooth. 


Make that four. Three. 


Love you all,


Liz 


#SecondCivilWarLetters


Elyssa D. Durant 
Research & Policy Analyst
Columbia University, NY

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