So, I get asked this question a lot. I mean I’ve been entirely bedbound since early December so it makes sense that people wonder what I am doing to try and improve. Last weekend, I met with my neurosurgeon to formulate a solid plan. So here is what’s next for me.
- I do PT (at home) 3x a week with my amazing physical therapist Kyle, and he gives me exercises to do daily. He has taught me countless isometric exercises, so I chose which exercises to do based largely on how bad my pain is on each given day. My parents bought me a recliner, so in the coming weeks, I will be attempting to get out of bed and push myself to sit in a reclined position. My goal is to work on standing eventually! Due to my hard work in PT, my strength has improved significantly. Unfortunately, the coordination in my legs when weight-bearing has remained pretty terrible. Imagine trying to stand with wobbly, uncoordinated noodles as legs; that’s pretty much what it feels like to me.
- My neurosurgeon explained that it will continue to be very painful and difficult to force myself into sitting upright, but it is time to challenge my body even more. This will help us see how my body responds. Will I recondition myself or cause further damage to my neck? Only time will tell, but I hope it is not the second option.
- Luckily, I have a ketamine nasal spray that helps take the edge off of my pain when doing physical therapy or practicing sitting upright. However, it makes me feel very high and out of it. I am not a big fan of feeling high because I am a bit of a control freak when it comes to how my body is feeling. I used this same nasal spray in the spring for many weeks, but eventually, I built resistance and there was no effect when taken. I am very worried that this will happen again; nevertheless, I am grateful to currently have this tool as a rescue medicine.
- My port has proven to be very helpful as I am now getting 4 liters of fluids through the port weekly. I alternate between normal saline and lactated ringers to boost my electrolytes. This additional hydration gives me more energy, slightly less vertigo, and increases my low blood pressure. I often get tingling in my right arm and lots of sharp pains around the port site, but friends with ports have assured me that they experience these symptoms as well. It is strange that no medical professional mentioned these potential symptoms before or after placing the port. Patient education is important. I wish health care professionals would take the time to provide more information and instruction before implanting a device into a person.
- This week, I self-injected my fourth dose of Dupixient. This was my first time injecting myself with the med, so it was pretty cool and exciting. So far, it seems to be helping my MCAS. I no longer get severe rashes and itching when my skin touches water, and my skin sensitivity seems to be getting incrementally better. Rashes still appear randomly on my body and my internal sensitivity remains, but I am cautiously optimistic that these symptoms will improve with additional doses. Since there is so much going on in my body right now, it is increasingly difficult to differentiate the causes of each symptom. My immunologist specializes in MCAS and believes that I will see more improvements with MCAS-related symptoms in 3-6 months. She also has me on oxygen three times daily. In theory, controlling my MCAS should strengthen my connective tissue and reduce the severity of my symptoms.
