a note i sent my doctor —
Dr. Dalack,
I went to my first infusion yesterday. Leading up to the appointment, I felt a lot of anxiety but was able to disregard most of it. However, once I arrived at the clinic, I started to feel fearful and nearly asked if I could go home and try again later. I went through with it! The experience itself was weird – I really can’t come up with another word to describe it. For part of it, I experienced a few colors and landscapes (I really find peace in nature which is why I travel to hike so often), similar to a panoramic overview that Apple uses as their desktop screensavers. Other parts were quite terrifying, as I would get stuck beneath darkness or caught in a cloud of black. In any scenario, I was able to open my eyes and see that I was still alive, so it was not too bad. Afterwards, I was picked up and ended up taking naps on their couch between (online) work calls until my mom was able to come pick me up. I’ve had a headache and mild dizziness since the infusion – I’ll be sure to mention it to the doctor tomorrow (my next appointment). My nurse told me to do lots of things that make me feel happy for the day of and day after, so I ate good food and played with my dog a lot. This morning, I had the energy to get out of bed earlier than usual and attend a workout class with a friend, as well as take initiative on a project at work that has been giving me a lot of fear. I’m not certain this energy and motivation is the infusion, but I feel hopeful.
(part 2 due to word count) I’ve been a patient in the UM system for a while now, and I really wish to give my nurse, Joshua, some sort of acknowledgement — I’m not sure if UM tracks patient feedback like this, but he was really the one that made me feel comfortable enough to proceed. He would introduce me to random staff walking around, share experiences from past patients (ie – letting the BP cuff be a grounding sensation during the infusion), and gave me a few heads ups on things that may happen in the area and that I shouldn’t be worried (ie – loud children). He also seemed genuinely interested in the treatment, patients, and overall, treated the session like it was more than just his job. However, everyone I came in contact with gave me a positive experience.
Tomorrow is my second infusion appointment. I am still quite afraid. I am aware that this is not an immediate cure, but something to kickstart my journey, so this week, I am attempting to do plenty of things that make my brain happy, even if I don’t quite *want* to do them (ie – working out, doing chores I normally procrastinate on, waking up early). I have more energy than usual, but I’m not sure if it is the infusion or because of all the naps I took yesterday. Regardless, I am excited to see where this treatment takes me.
Thankful for your help getting to this point and for your care throughout the process. I’ll be sure to update you again in the near future.
Irene