Jefferson Adventure: Day 1-2

Sunday morning, July 23rd, dad and I got up and ready to head to the airport. I got my Sophie dog packed up, my Glitter cat kissed and assured of my love, my living room as empty as possible for the flooring to be replaced while gone, and made a stop at the Sycamore Dog Estate before meeting up with dad and stowing my car. Our drive was grey and rainy but uneventful.

Thankfully the rain and lightning cleared before our first flight and pretty soon we were in Atlanta. After some airport lunch we boarded once again and touched down in Philadelphia at about 4:30. We found my bag at baggage claim and called the hotel to request the shuttle. We made it to the hotel where the man at the check in desk was rather confused about the separate reservations under the same last name (one for dad and me and one for mom when she joins me.) but we got it all figured out.

I was disappointed to learn that there was not complimentary wifi except in the public areas but we have been blessed with 4G on our cell phones so our grub hub order could still be placed. I know, first world problems are tough. Getting our dinner was a bit of a circus but we didn’t go to bed hungry so all was well in the end.

This morning, Monday, I called to confirm my 1 pm appointment and we caught an Uber to the city around 11 am. We walked around and found an ihop where I got breakfast and dad got lunch, and we met the slowest waitress I’ve ever seen in my life. Thankfully I had allowed us plenty of time so there wasn’t much worry about being late to check in for the appointment.

After sitting in the waiting room for about forty minutes I finally made it back to talk with my doctor. She was trying everything she could to get my insurance to approve my admission so that we could go ahead with the lidocaine infusion as planned but so far hadn’t been successful. After lengthy discussion of our options, we settled on a plan for me to come back at 7:30 tomorrow morning for outpatient infusions and pray that insurance calls back with good news. My vitals weren’t good enough for her to feel comfortable administering the medication she would have preferred without me being inpatient, but we will try some abortive IV medication to hopefully at least provide temporary relief while waiting out the insurance call. She was also rather appalled that no other doctor has talked to me about POTS (Postural Orthostatic Tachycardia Syndrome) before now because my symptoms point that direction and – SURPRISE – I have responded to the medication she gave me to control said symptoms. It’ s a form of autonomic dysfunction that is seen very commonly with NDPH. This means my body can’t regulate things like heart rate, blood pressure, and temperature the way it should.

We discussed my increased joint pain and issues with insomnia and she thinks that the joint pain spike could be a full body response to the recent Botox treatment I had and that the lidocaine infusion could be helpful for that. The idea of that infusion is to calm my central nervous system which is overly sensitized. However, that particular treatment comes with enough cardiac risk that in order to do it, I will need to be on a monitor 24/7, which is not something that can be done in an outpatient setting.

Tomorrow dad will fly back home and the plan for me to be at the hospital is very up in the air right now so I made myself further hotel reservations so that we can continue with the outpatient treatment. Mom is still planning on driving down to join me on Thursday and depending on insurance decisions will drive back home together at some point.

We’re all praying that things go our way and that I can have this infusion that I’ve been so hoping for for the past two months but keeping in mind that there is a plan in motion bigger than my own. I will be incredibly disappointed if the denial isn’t overturned but I’ve been keeping in mind Philippians 4:6-7 that says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Its really difficult to accept when what looks best to us is not what God has in mind for us, but thankfully, he is much better at directing my life than I am and so I will just do my best to trust that if the answer is “no”, its because something else, even better than what I can imagine, is in store.


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