In the week following my GI appointment, I had some more inflammation issues due to the humidity being 100%. I seemed to have injured the arch of my left foot (the already injured one) because it was extremely swollen one day, and I popped a blood vessel walking to class. It resolved itself two days later.

I got my new TPN formula on the 27th of October and was excited to be fully back to all lipid bags.

I was still having some stomach grumbling issues and was often getting embarrassed at school for how loud they were in class.

On November 2nd I had a hematology appointment which I was surprised I got so soon. I was referred initially but the referral never went through, so I called, and they were able to schedule me in the following day. Perhaps they have my name flagged since they know from the past that it’s better to see me sooner rather than later ;-).

It was a great appointment to see them again because the hematology team is a goofy bunch (to me personally). They spent about 10 minutes straight telling me that they don’t think I have porphyria which took everything in my being to not laugh out loud. I thought it was so cute they felt it was something they needed to tell me about when I had been trying to convince them all last year that I didn’t have this condition.

Otherwise, I had mentioned to them that I needed to schedule another iron infusion since my other iron lab test (that I forgot the name of at the time) was low. I mentioned ferritin was fine but the other one wasn’t.  They went to the computer and then read my lab test result letting me know my ferritin was fine and my other iron lab test was low. They said I should get an iron infusion. ­­– See, they like to figure it out for themselves, and I’ll take the unmentioned credit ;-)

I had sent some portal messages to my doctors that evening, and I realized my emails use my “stage manager work language” and even my appointment from earlier with hematology had it. When I had walked into the appointment, I had asked how my doctor was doing and feeling- whoops!!

Post November 2nd, I was having a lot more difficulties with my cream of rice and eating in general. My stomach would grumble more so I would respond by eating more which just created a whole slew of issues.

I would get frustrated because the hunger wasn’t resolved by eating more and I would become very weak and shaky even though my blood sugars and everything was fine.

During this two-week period, I had also been getting vertigo attacks more frequently, lots of head pressure (which I normally had and assumed it was dysautonomia related) and began having more scintillating scotomas (a type of ocular migraine).

By November 14th, I had begun doing more physical activity in my classes which resulted in more stomach grumbling (makes sense) and more shakiness from fatigue.

On the 15th I had my iron infusion which I had hoped would help with my fatigue levels (it didn’t really since the fatigue was more nutrition related).

I had also begun taking a new blood pressure medication to raise my blood pressure which didn’t seem to be working much since my blood pressure was still low.

Since the stomach grumbling issue was getting worse, I reached out to my support groups to ask other TPN users if they had experienced anything similar.

I had a group consensus that I just wasn’t getting enough calories for the energy I was spending in a day. Normal people are able to eat a snack or a meal to compensate for that energy expenditure, but my body isn’t able to. So, if I spend all my energy at 10am, the rest of the day as I use energy to walk to class, do assignments, and internally have my body continue growing, it’s all using energy I don’t have which is what was resulting in the symptoms I was having.

I reached out to my dietician to up the number of calories in the TPN to compensate for the energy I was spending. They were able to send me a new formula with upped calories the following week.

Additionally, I had also been making my “help cards” for my peers at work to have in case I go into an emergency situation in which I can’t assist myself. I had them printed on business cards and have spare in my backpack. Over the break I was going to continue making more emergency prep paperwork to keep stored in my TPN backpack at all times.

I was looking forward to the weekend since I was entering into Thanksgiving break!!! I couldn’t wait to see my family and was thrilled to be hosting Thanksgiving this year.

Read how Emma’s holiday goes in, “A Very Emma Thanksgiving”.