Wheelchairs & Physical Therapy

Jun 1

After the short inpatient stay from the line infection scare, things at home began falling into a routine.

My roommate’s family had arrived in town the day I was released from the hospital and were staying with us in the apartment as well. They had brought their dog, so it was nice to have some serotonin from having a dog around.

When I arrived home from the hospital, the wheelchair that the occupational nurse had ordered finally arrived. We were so happy to get it because it was so much smaller and fit much better in the house to move around (since my dad couldn’t fit the normal sized wheelchair through the tight corners of my apartment).

On September 12th, I had been wanting to eat something else that had some semblance of a flavor (since broth was becoming a bit bland) so I tried a small piece of plain deli turkey. The whole rest of the day I was flaring, so my body won and I remained on broth for the remainder of the weeks.

September 13th, we took the new wheelchair out for the first time to an appointment with my primary care physician where we discussed the potential of trying a small dose of Mestinon for the POTS symptoms. Also, from taking so many medications for so long, my tongue had developed oral thrush (again). I was prescribed antibiotics for this as well.

I spent some time over the coming days doing an arts and craft project in my bed (it took forever which frustrated me because I kept having to stop because of nausea). I made a daily activity chart that was dry erase and had Velcro symptom cards so my dad could look over and see how I was doing without having to ask me (if I was too fatigued to talk).

It was also around this time that I missed my period because of how malnourished I had been. The TPN was working, it just had a long way to go before my body was nourished again.

I had gotten better with showers over time but was always too fatigued to dry my own hair. My roommate and my dad would help dry it for me.

On September 19th, we had planned to go to the public gardens for a little bit so I could be outside. This was the first time I had been out for something other than an appointment since June.

It was really pleasant, but we had to cut it short and find the nearest building with a public restroom since I was always having a full bladder from my TPN (which at this point had a 1500mL volume).

That evening I had a flare and continued on with my usual symptoms.

I had started having more consistent migraines whenever I disconnected from my TPN but was still waiting to get a glucose monitor to determine if my blood sugar was dropping when I wasn’t connected.

On September 20th, I seemed to have caught a common cold on top of already being sick. It was very annoying and sucked.

In physical therapy we were making a lot of progress- we got me out of my wheelchair and did a lot of walking exercises. Each visit we’d count how many steps I’d be able to make and time how long I could stand for.

During my appointments I had a blue safety strap on me the whole time that my physical therapist held in case I fell over. Luckily, I never fell!

By September 22nd I had walked 43 steps and could stand for 1 minute.

Since my fatigue was still very present, my doctors were researching further into potential causes. It was then that I received a phone call from them saying that they didn’t realize iron labs weren’t being ordered for me. They informed me that TPN doesn’t have iron in it since iron doesn’t mix with the ingredients. I was told I also couldn’t take supplements because it needs vitamin C in the GI tract to be able to bind with it. Since I wasn’t eating anything, it wouldn’t have worked.

From all the help from physical therapy (aside from my fatigue and symptoms), I was able to move around more on my own without the wheelchair in my house. I began learning from my dad how to change my own TPN in order to be more independent.

By the end of September, I had decided to make a social media post discussing all the health issues I had been going through. It was a very nerve-wracking thing to post, and I had many emotional ups and downs through the weeks.

My blood pressure was constantly a bit weird, and my circulation was poor. After leg exercises some days, my legs were pale white and cold and some days they were purple and swollen.

On September 25th, I was in bed holding my phone when my fingers started shaking. I knew this feeling all too well…

I began having the same upper body twitching as when I was an inpatient. We caught the whole thing on video to show my doctors in the future. I took my muscle relaxer and after an hour it ended.

I also finally received my glucose monitor. When I was on TPN my sugars were in the 100s-110s. When I disconnected my sugars dropped to 77. This is why I was so symptomatic when I wasn’t connected.

On September 27th, I received the news that I was iron deficient. We were informed we’d receive a call at some point to schedule an iron infusion. I also finally received information that my Gastric Emptying Study had finally been scheduled for October 8th.

To fill the time in the limbo I began doing 2 new things: I did sticker by number books (since coloring books were still too fatiguing for me) and I began compiling and creating a medical history binder.

The binder was massive and had every important document in it from the whole history- foot and stomach. I neatly organized it in chronological order with colorful labeled tabs and sections, so documents were easy to find.

September 29th, I had another muscle tremor/twitching attack and also caught it on video. I was informed by my nutritionist that my symptoms could be related to having a disconnect time for my TPN.

I was sent a new pump and switched to a 24-hour infusion time. My TPN volume was increased 200mL (which was the equivalent of a 8oz glass of water) since I was a little dehydrated.

Since I couldn’t disconnect from the TPN and my line couldn’t get wet, I got a bedside shower from Amazon. My roommate taught my dad how to wash my hair (since he is bald) and they’d wash it for me. It was also much easier for me since I wasn’t as fatigued having to do it myself.

I had 2 more large flares the same week.

The new normal in the new limbo was becoming more routine and we tried to make the days as comfortable as possible.