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| 2007 |
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| 2009 |
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| 2023 |
Sixteen years ago after months of talking on the phone...and Myspace 😄...B flew out to see me and then we raced up to NYC for an LPA regional. We danced, went to Times Square, and got stuck in a Nor'easter. A few years later we went back again after we became engaged. I thought he was going to propose on that trip and mentioned it to a friend, she told him and then he changed his plan and proposed a few weeks earlier. We fit in as much as we could and made lots of memories.
When the doctor's office made the stars align and scheduled me with three different offices on the same day it happened to be on one of B's days off. I was so happy that he would be the one to go with me this time. The trio of appointments began at 7:45 I knew we would have to go up the day before, so we made arrangements to go up Sunday and return Monday night.
We took the train again, this time we went out of New Carrollton which I think I would do again. It takes nearly the same amount of time to get to Union Station and it is cheaper to park at New Carrollton. We got to NYC around 1 and just like last time I was starving upon arrival. We dropped our bags off at the hotel and called an Uber. I decided to try requesting an accessible Uber and while it may be accessible for an individual using mobility equipment that boards with a ramp, it was not accessible for me. I did make it into the van with some combination of hurling myself into it and B's help, but it would be nice if you could specify what your accessibility needs are on the app. We decided to go to Chelsea Market, I craved noodles and B had been following a farm / butcher shop / restaurant there. Both were perfect, after wandering around and picking up some goodies for M we headed back to the hotel. Later we had dinner at one of the restaurants at the hotel and took an Uber through Times Square, which I'm so glad we did. No part of me wanted to get out of the car and walk through the crowds, but driving through the lights was mesmerizing.
The next morning B went out to find us bagels and he found a local gem that also had the business of the NYPD so he knew it was legit. We ate half our sandwiches and headed to the hospital. I mistakenly gave the driver the main address instead of the address of the first appointment so we had a surprise hike across campus to the correct building. Once I got settled in I told B he could go as I was going to be there for several hours and there was no point of him sitting there when he could be exploring. The Skeletal Dysplasia Clinic provided a very thorough and comprehensive assessment of my needs. The appointment started with talking to a Social Worker who asked about my mental health, my supports, and gave some recommendations on how to work through anxiety. She reminded me there's value in sitting in the anxiety and acknowledging it because when we distract ourselves from it, it can get bigger. A Nutritionist came in next and she affirmed that our family was eating a well balanced diet. She encouraged more water, and lots of healthy proteins to support my muscles pre and post surgery. I had my hearing tested - all good. Then another Social Worker came in with the Physical Therapist and Orthopedist to examine me and give recommendations. Their demeanor was so different from Dr. Kopitz and I appreciated their liveliness and candor. Apparently I've been walking the wrong way and too fast my entire life, so they showed me how to walk more slowly, using better posture and engaging my core. They had me complete different physical tasks, some of which I struggled with and when I would say "Oh I haven't done this in a long time, I should have been practicing." They would say "It's not you who cannot do this, it is your body that cannot complete this task." Or when I would ask if their assessment of something was good or bad they would say "It's neither, it is just the way you are." I appreciated their reframing and it was a nice reminder to not be hard on myself or feel guilty about what my body is going through. They were also kind enough to let me take their hospital gown and shorts with me as they custom cut the gowns to fit LPs, and I wouldn't find them in other departments of the hospital. We finished earlier than expected and B was nearby so we hopped in a cab to eat the second half of our sandwiches in Central Park before the next appointment. We couldn't have asked for nicer weather this trip and enjoyed people watching.
The next appointment was with the Neurosurgeon and I was not looking forward to it as they had also scheduled an EMG (Electromyography). I had an EMG when I was a teenager and remembered it being unpleasant, but knew I could push through it. B was already planning what he was going to do while I was in the next appointment and we joked about him sending pictures of the Roosevelt tram and hotdogs while I was getting electrocuted. Getting electrocuted was just as unpleasant as I remembered but the muscle needling after was hard. My EMG showed normal responses so they continued to the muscle needling to see if the spinal compression had lead to some of the symptoms I'm experiencing in my legs. The needling was not so bad through my arm and upper leg, but once she got to my lower leg, my lower leg wouldn't stop spasming which made the needling very painful and then I started crying. And I couldn't stop. I think it just brought up a lot of things I had been suppressing and it took me awhile after the appointment to stop crying. A note if you should ever find yourself getting an EMG - make sure you use the restroom before starting. After an hour of being shocked, needled and spasming I needed to pee ASAP. Maybe it's just me, but I thought it was worth sharing.
We wearily made our way to the next appointment with the surgeon, and he okayed me for surgery and I plan to schedule it for early July. He said most individuals are discharged the following day, spend 10 days in a collar / brace, 6 weeks no driving, 3 months to all normal activities / complete recovery. Manageable.
At that point we were ready to get home to M, the kitties, our home and tried to get an earlier train, but there was an extra fee and decided to wait. Monyihan is a nice place to wait but little did we know...our train was delayed so we did not get back to our house until midnight. I was so happy to be home though. My parents stayed at our house with M and everyone was fast asleep when we got home, but for Yoko, she came out to welcome us back.
It was a good trip. It was great to spend time with B outside of our bubble and I feel better about next steps and my health. NYC got back a little bit of its sparkle too.
