Today I was Validated, Heard, and Recognized
Neurology was the last stop. Onward and upward.
Nine months. Nine months after my stroke I finally saw a neurologist today. I only got this appointment because I drove out there and made the appointment in person. I called and called and left messages and left messages and so did my Primary’s office as well. No one ever calls back. I did a reverse lookup on their phone number and got their address. Then, I Google mapped them. Then I took off.
I need speech and physical therapy. Oh, joy. But if it helps it helps. I’m down for whatever it takes to get better. She was shocked as she went down my medical records and called off all of the diagnoses. She went digging around for my MRI and her mouth flew open.
“All of this imaging is yours?!”
“Yep. It’s a wonder I don’t glow in the dark at this point.”
“You’re too young to have this many health issues. Even cataracts (her husband is an eye doctor/surgeon). Have you ever been exposed to anything that you know of?”
That’s why I do what I always do. I got choked up and couldn’t speak.
“9/11.”
She shook her head and went on to say that she sees this kind of stuff from military personnel that has been exposed to Agent Orange and the like or have been on Camp Lejeune. She just kept saying over and over again about how I was too young to be this sick. She likened it to people in the 80s.
2974 people died on 9/11 but to date,
4343 first responders and survivors have died since. *
I know the feeling. All too well. When I was taking care of the old man, he would outpace me in Walmart. Dad was 80 or 81 at the time and I couldn’t keep up. I keep thinking with all of the upcoming procedures that maybe by the end of June I’ll feel like the Bionic Woman.
Tomorrow I will be sitting at my new writing table that only took me a month to put together. But hey, I did it! I’m proud of myself too. A month to get it out of the box and another month to put it together but damn if I don’t have a place to work now besides the bed. From this shiny new object, I shall make all the calls that I need to make including following up with the nursing service to get help here. I did the initial intake last Friday but after what happened at the Breast Center, I was in no mood to deal with anyone else and was completely wiped out.
But I’m going to need transportation to and from some of these appointments (sedation) and I’d rather have an RN with me than a Lyft driver. No slam against paid drivers but with my health I’d much rather have the medical backup on standby if I can get it.
Part of tomorrow will be commencing on the next long road and that is of filling out the application for the set of specialists in NY that deal with 9/11 Sickness. With the app and all medical records, they go to this team to review. If they think it could indeed be 9/11 Sickness (like really? That’s the BEST name they could have come up with? 🙄) then they will send for me and evaluate me in their facility.
Thanks for sticking with me on what often seems like a never-ending journey into the bowels of hell.
I appreciate you ❤
