Faulty Grounds
June 29th, I woke up after sleeping for 12 hours straight and decided to spend the morning writing some blog posts for the website.
At 1p.m. I headed off to the hospital for my GI appointment (that had been canceled the previous week).
And ohhhh boyyy was this appointment interesting…
So, I always go into these appointments knowing that I’ll keep it together in the appointment and be as much of a rock as possible but when I get home, I’ll always end up crying.
I also go into the appointment always knowing that I’m going to be hit with new tough information that is assumed that I know and will be told some sort of rapid-fire plan that I have to get myself out of somehow.
And just as I expected, that’s exactly what happened.
I came into my appointment and my doctor first asked me how eating was going and if I was eating anything. I said yes (explained the Smarties and other trials) but that at the moment I was flaring a bit, so I was trying to take it easy on foods for the time being.
Then right afterwards they asked me, “so when do you want to do the liver biopsy? Now? Or do you want to wait?”
I was very confused and said “what? What biopsy-what are you talking about?”
They then proceeded to tell me that my one of liver enzymes was recently a little elevated, and they’ve done all the changes they can with my TPN, so they want to do a biopsy to see what’s going on.
I came up with my response quickly, but it was effective in slowing down their rapid-fire plans; I said, “has it been elevated consistently recently or just recently?” I asked this knowing that my liver labs only get tested once a month and they could be seeing that the enzyme for this month was high and doing all of these elaborate things instead of waiting to see if it goes down or remains the same, etc.
I then got the response, “we’ll wait then” which told my answer meaning it was likely just this month’s labs.
A lot of inferencing having to be done in these appointments and knowing the patterns of how doctors might respond and behave.
They then asked me, “when’s your next break? It’s probably winter break…”
I did not get a chance to respond before they told me what was going to happen with my care moving forward.
They said I was going to be an inpatient during winter break, and they were going to put an NG tube to trial enteral feeding. They said after the trial they’d do a surgery to put in a peg and that while I was an inpatient, they’d do the liver biopsy.
After they explained their whole little plan, I simply said, “No.”
I explained to the doctor and said I was not at all comfortable getting an NG tube because I had trialed the enteral feeding formula many times and it had resulted in large flares. And these flares mind you, were only from one sip- imagine having 24hr feeds?! I wouldn’t be able to get out of bed!
They explained to me the reason they want me to switch is once again the infection risk with central lines.
I was frustrated because I’ve had to repeat myself so many times to explain that I care about my quality of life over how much time I get. Personally, me being “alive” but being confined to my bed needing 24/7 constant care and being in pain is not living whereas having something that allows me to live and not be confined to my bed is what I prefer to choose.
After the response of me saying no and that the enteral feeding made me sick, they then quickly spat out the response of “maybe you have psychological and mental issues with food”.
I sighed after I heard this- it was clear that they said this because they were frustrated about not knowing what’s going on with my case.
They said it didn’t make sense that I got so sick from such a small amount of food and that my symptoms from it were so severe and nothing they’ve ever heard of before.
I said that it was fine that they had never heard of it before but it that in itself doesn’t make it then psychological.
I had to carefully explain my way out of how it was not a psychological issue or a fear of me eating food (I think that’s pretty evident in all of my articles where I eat).
In the past I had also been told by this doctor that I likely just didn’t have a high enough pain tolerance to deal with the pain and that I needed to handle the “slight discomfort” when eating.
So ya-I’d say I tend to get frustrated in these appointments when I hear things like this.
I kept expressing that I would not consent to do enteral feeding and we left the appointment both on different sides. They told me “I had time” and it was something to keep in the back of my mind-which honestly them saying that is already growth of them beginning to accept what’s going on with my health.
I got home and immediately started crying. I was crying out of fear because it’s such a scary feeling to feel as if you’re not in control of the decisions regarding your health and that everything I wanted to do could be taken away.
I called family and got back to a point where I could remind myself that I still have the control to make choices for my body and people can fight and argue with me about it but it’s ultimately my choice.
The following days after the appointment, I began my next set of summer courses and began researching and studying up on new medications that are in the works for parenteral nutrition related liver disease.
On July 3rd, my hunger cravings had once again come back with a vengeance and wanted “real” food. I was out of peanut butter because the brand I had been eating had their products recalled so I was searching for my house desperately for something to that effect.
It was once again a dangerous time because I knew if I couldn’t find anything to eat, I was going to eat the mashed potatoes (which is one of my flare trigger foods).
I was very lucky because I happened to find a box of unopened cream of rice. I hadn’t tried it yet and because of the hunger craving there was no time like the present!
I quickly heated up a serving of it and just mentally prepared myself on if my schoolwork would be able to be made up if this caused me to flare for a week. I said sure and grabbed a spoon and some salt and was ready to eat.
I put the rice in a bowl originally to make it, but I moved it into reusable cupcake liners because I know myself and if I had the whole bowl, I’d eat the whole bowl and then deal with the consequences later.
I put some into a cupcake liner and ate a bit and then waited (just to check for flare signs). The cream of rice tasted like liquid gold because again, I don’t eat much of anything with any flavor.
Continue reading how the cream of rice went in, “Thoughts Filled with Cream of Rice”.