This is Part 1 of my Gallbladder Saga.
It was a Friday and I was headed out to shop for some spa items for my friend's craft market, and I kept having this odd pain in my upper right abdomen.
I had been eating some arugula more often (we love eating out of our garden), and I also had been working out a little bit again. When I was young I used to do 500 crunches every day, so I started doing 200 right before bed.
This pain felt sort of like my regular stuff, but not really. The pain was constant, not crampy. It kept doubling me over and I felt very distracted, but it also didn't feel serious. It didn't feel exactly the same as my Crohn's Disease, but it did feel similar. That inflamed organ pain that I have become so accustomed to, but less intermittent. I was confused and in pain - a frustrating combination.
Over the weekend, the pain kept worsening. It became more and more intense and started distracting me from everything else.
The moment I began to sob while just sitting on the bed, we knew it was probably time to go in and have me checked out.
My biggest fear at that point was getting to Urgent Care or the ER and finding out it was a torn abdominal muscle or, more embarrassingly, constipation. There was no real foundation for those beliefs, but more of a constant concern that I might waste time and resources for something minor. There has been a lot of criticism about chronic illness patients seeking care from urgent services for issues that cannot necessarily be addressed in an Urgent Care or ER, so I am ALWAYS really nervous. I am always anxious about getting somewhere and being told that I have made a big deal out of absolutely nothing. These criticisms and these fears are often the reason I never want to call an ambulance, I wait for pain to become unmanageable, and I stay far too long at home trying to deal with it myself, and then realize how much I needed more emergency care.
We decided to try Urgent Care first, instead of the ER. If there was no sign of anything more serious, they may have provided all the care that I required. If I needed more care, at least I could say that I tried Urgent Care first to handle the issue.
After bloodwork was taken, I was informed that my liver enzymes were up. Not just my ALT, but my GGT enzymes were up. This is an important distinction. As I came to understand it later, ALT enzymes can go up and down for various reasons, but GGT can be a more pointed sign to something more serious. The doctor there immediately scheduled me for an ultrasound the following morning and informed me that, due to my history, the likelihood might be an Autoimmune Liver Disease.
This was terrifying.
I don't know how often I have mentioned it in the past, but when I was 14-15 years old, I was diagnosed with both Ulcerative Colitis and Primary Sclerosing Cholangitis (the latter being a severe autoimmune liver condition). At that time, biopsies were taken, I was put on medication, there was cirrhosis seen on my liver, and my liver enzymes continued to be an issue over the next 3 years. Then, when I had my large intestine removed and then my reconnection done, there was zero sign of any disease or damage on my liver. This was both a marvel and an oddity.
So I was removed off of medication and I had no further issues (other than random liver enzyme elevation every 5-6 years). The diagnosis was retracted, though I have long-held the belief that I may have stumbled into a Remission that may one day end.
So when this physician mentioned liver disease, my mind jumped straight to that thought:
"It's back".
I was sent home, instructed to take more medication if need be, and told to call my GI specialist and book an appointment. Of course he also said that if my symptoms worsen to head to the ER, because if they needed further testing, Urgent Care would not have the facilities.
When I went home to wait for the ultrasound the next morning, I was curious about GGT enzymes. Now, I am pretty damn good about NOT looking at Google *dun dun dunnnn*. I normally wait to research after a diagnosis has been made. I wanted to know what GGT enzymes were, though, because I had yet to learn about them. So all I googled was "GGT liver enzyme definition".
In this case, Google was the devil.
You know when you get your search results and all sorts of additional questions pop up in your feed? They are common questions that other people have asked when searching the same topic. If you are as unlucky as I was that day, then you'd know that sometimes they will even show the answer without having to actually click on the question.
The question and answer that came up - without searching or asking or even wanting to know - was:
"What is the life expectancy of someone with autoimmune liver disease?
6 months - 10 years."
That '6 months' was just glaring at me. Panicking me.
Safe to say, I had a tough time sleeping and I did no further reading.
This was the beginning of my week.
Several days of strange and worsening pain, questioning whether or not it was serious enough to be seen by urgent services, and relenting when the only thing I was able to do at home was cry.
Now, I know that I worry too much about being criticized. I worry a lot about being reprimanded for wasting the time of others, of making a big deal out of a relatively small issue, or being dismissed because I have blown up a small issue. I know that that is my own issue and that I need to drown out those doubting voices, but there is such a thing as a chronic illness reputation in the ER and I don't want one. It could affect the way I get treated in the future.
So I wait until I cannot take it anymore. Then we go in.
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