New Doctors, More Tests & Still No Answers
The days following the emptying study I wrote minimally in my journals due to dealing with the severe pain and being unable to write. Amongst the pain I was still having reactions from the senna (see the story titled, “Tubie Clips & Wheelchair Gear,” for more info) but it was slowly dying down over time.
Back over the summer my mom had scheduled an appointment for me to see a pediatric GI specialist at a hospital that was known to handle rare cases. We kept the appointment to see if they had any ideas.
I had been called a week prior by the hospital with them wanting to drop the case, but I called them back and fought to keep it.
On October 11th my dad and I went to the appointment. It happened to be the same day that Boston was having their “make-up marathon” so we left extra early to be sure we made it on time.
I was having an extremely high pain day and therefore my emotions were on the brink. As my dad helped me into a Lyft, I burst out crying from pain.
As I am with most of my appointments, I was on edge- curious what type of doctor I’d be seeing. I knew they were the head of the department but that isn’t always a good thing.
I saw the doctor and they had the medical team see me as well during the appointment.
They examined me and didn’t want to see the binder (which is fine- I always bring it in case). During the physical exam I cried out since I was already spiking in levels above 10 all day.
The doctor asked me what I wanted out of everything- I had never heard someone ask me this so I didn’t really know how to answer. I started crying because I hadn’t ever heard a doctor express a concern for me as a person before (except for my PCP I had at the time). I said I didn’t want pain anymore but that isn’t my true answer. My more realistic answer in a calmer mindset is: I don’t want to continue having massive flares that leave me bedbound for over half a year.
It was quite awkward crying in front of their team, and I tried to get myself under control again since I didn’t feel safe to cry.
They then expressed their opinions on my case; they said they highly disagreed with me being on TPN and wanted to look at my pain as the illness instead of a symptom. They believed I had multiple undiagnosed issues that were contributing to each other making everything worse. They wanted the nerve entrapment in my abdomen to be handled with cortisteriod injections to reduce my overall pain levels.
-I want to interject here and mention we did inform them that I was told by multiple doctors to never do cortisteroid injections again anywhere due to the severe tissue loss that happened to my foot. They told us we could do Botox injections instead. -
They wanted to send me to the Mayo Clinic to do rehab to get me out of the wheelchair and get me eating again. They said it would be really painful but over time it wouldn’t hurt anymore to eat.
We asked how they knew that, and they said they’d seen tons of cases like me, and I just needed to not be afraid to eat again.
-Okayyyy, let’s take a pause here. I think we all know I have no problem with the psychology behind eating. I’ll eat anyways and if I knew it was going to enable me to eat again, I’d do it. But the fact is, it wouldn’t work. How do I know? Because of the past, it’s happened every time. –
We told them that we hadn’t heard the GES results and asked what they thought. They said they guaranteed the test would come back showing nothing.
Well! Were they entirely wrong!!! (also, why you don’t guarantee things…)
So, we didn’t love this appointment and I knew that everything they were saying I had a response to why things were the way they were.
I was stuck in a wheelchair due to pain and nausea. Alongside this, being in bed made my muscles atrophy over time but I knew I could get the muscles back fairly quick.
The eating was not due to a psychological fear but rather the fact that I knew continuing to eat would worsen symptoms, not make them better.
After my appointment, they requested to drop my case and said I could find better help elsewhere.
The following day I had physical therapy and was informed that my physical therapist that had been with me for almost a year, was leaving to work at another hospital. That day I walked 2 laps in the office without any sitting breaks.
My GES result came in that evening and showed “severe gastric delay” and “prolonged emptying”.
I had also gotten notes back from my neurologist regarding my tremors which they believed could be cervical dystonic tremors (cervical spine).
Lastly, my stool test came back (which again take into account the senna reaction) showed intestinal inflammation with Calprotectin being 59.9 (which isn’t even that high).
Two days later I had an echocardiogram done to make sure that my high heart rate wasn’t because of any physical heart issues. The test went well, my upper left abdomen hurt a bit since for some of the exam they had the ultrasound monitor there. All results came back looking great! My dad said during the test he could see the end of my PICC line bouncing around in my heart from my heartbeat.
On October 15th, I went to my college major’s yearly kickball game to watch on the sidelines. It was tough seeing all my peers in their fall semester but nice to see old friends.
After all of these appointments, I entered into the reality that nothing was coming up next in terms of new tests or big appointments on the horizon. I had to grasp that I finally needed to live in the present since that’s all I was left with during this limbo.
Read the next story, “Adjusting on the Tightrope” to find out how Emma’s life in the new limbo was.