Yes, I am sick. And because I don’t really want this blog to be entirely about that, but because it is an integral part of my story, I need to address it fully, at least once. Because it’s going to come up, from time to time, it’s unavoidable.
So here is a not-so-quick synopsis for you, in case you are new around here, or just not paying attention.
A few years ago, I got sick. I started having this incredibly annoying nagging pain on my upper right side. It came and went, but it was pretty severe, to the point of keeping me up at night.
So, I did what any normal person would do, I went to the doctor. Who told me, just based on my symptoms, that I had a gallstone. He gave me medicine, and sent me off for an ultrasound.
Where they found, not gallstones, but a kidney stone on the right side, that was 9mm and high in my kidney. So I was referred to a Urologist who did some CT scans and confirmed it. He told me however, that there was not a high likelihood that it was what was causing my pain. But he would blast it anyway. And he did. I had lithotripsy on that side, and peed out sand for a few weeks.
And still the pain was there.
So I went to a new doctor, (mostly because we moved) and he told me that he suspected I had a non-functioning gallbladder, which can cause similar pain, but will not show up as evident on scans.
He sent me for a special test, a HIDA scan. Which is a fun test that they tell you is very safe, but during which they inject you with stuff that comes from a lead box, in a lead room, while they themselves wear lead gloves and lead aprons and use a lead needle. The test showed that my gallbladder was not, in fact, working. (If you care, my ejection fraction was 0%)
In November of 2007, they removed my gallbladder laproscopically. It’s supposed to be a relatively easy procedure, and it is done now on an outpatient basis, at least if you have my insurance, so I was somewhat surprised by how bad it really was and how fucked I would have been had the Man not been home to help me. I literally could not sit up, could not even lift my head for several days.
I recovered slowly, and my scars are much more evident than those of a woman I know, who had the same surgery on the same day in a different hospital across town. But everyone heals differently I guess.
And, I was still in pain. So I was referred to a gastroenterologist who did in the following order:
Upper endoscopy, a colonoscopy, something to two different sphincters that can malfunction after gallbladder removal, and an ERCP where he placed a stent in my pancreas.
Along with a billion and one fun tests involving my bodily waste and blood and tears and etc.
At this point my hair started falling out from the anesthesia. I also started gaining weight from being unable to too much other than roll around on the floor in pain and recover from these procedures, which have been almost monthly.
Early in 2008, about two months after the stent was placed, I woke up one day and decided I was having a heart attack. I, being the genius that I am, decided to wait it out. When I didn’t immediately die, I called the GI and told him my symptoms. Crushing pain in the center of my chest that would. Not. Stop.
The office told me to go to the emergency room, and I told them. “No.”
In my defense, I had a kid with me, and the ER here is.. scary, to put it mildly. I told them if I was having a heart attack, I’d have been dead by now, and this was something else.
They agreed to see me right away, and I went up there with the kid. (this was before school started) The doctor took one look at me and my blood pressure and admitted me to the hospital.
I was having an attack of acute pancreatitis.
I spent about a week in hell, with the worst most obnoxiously rude roommate ever and a headache the size of Texas due to the Dilaudid they kept pumping into my veins. ( once they finally placed an IV, but that’s a different subject altogether) They went in and removed the stent placed much earlier, because scans had shown it moved and was blocking flow to my pancreas. This was likely the cause of the attack. So they took it out, and then waited until the pain was bearable, and sent me home.
But the pain never fully stopped. It never ended. I started, well, going to the bathroom, a lot. I know. Yuck. But it’s relevant. I also started throwing up, on a regular basis.
I went back to the doc for a follow up and he told me he suspected that I had chronic pancreatitis. He said that sometimes an attack of acute pancreatitis can cause damage that can lead to it becoming chronic. He set up yet another test, an endoscopic ultrasound, to diagnose it.
I went home and googled. I read page after page, and forum after forum. And, well, freaked out. I know enough not to trust everything I read on the Internets, but a lot of the information was the same wherever I looked. Pancreatic cancer. Diabetes. Constant complications. A higher-than-I’d-like likelihood of not living more than 10 more years due to complications. Pain forever, or at least until the pancreas completely dies, (Which, hello, does not sound like particularly fun option. You don’t know how many doctors have since tried to spin that at me like its a good thing. ” Hey, good news! In ten years or so, the pain will possibly stop!” “Because I will no longer have a working pancreas?” ” Um, yes”)
So, when I went in for the EUS, and received the diagnosis, I thought I was prepared. I may have even appeared calm about it, but inside I broke down. A lot. (I am still breaking down on a pretty regular basis.)
Eventually, I got a new set of doctors, and second opinions. I still have chronic pancreatitis. There are a few theories floating around, one being that I have inherited hemochromatosis, (my father has it) and it’s causing my organs to fail, and another is that the initial lithotripsy weakened my pancreas enough that it was more susceptible to the damage done during the initial attack.
Whatever the cause, I am sick now. I am on pain medications, enzymes for digestion, stomach medicines, anti nausea medicine and etc for the rest of my life, and my symptoms can not really be controlled even with the pharmacy I must ingest just to be able to get out of bed.
So, when I’m sitting behind you in the parent pick up line, looking annoyed as you lazily stroll around your car, (that you weren’t supposed to get out of) it’s not because I’m a bitch. Its because I really, really need to go to the bathroom.
And when I sit at the computer all day long, it’s not because I don’t feel like cleaning, it’s because if I move, I will likely vomit on my monitor.
I don’t have a job outside the house, because its really hard to find a place willing to overlook the fact that I am on pain medications full time. Or a place with the flexibility to allow me to run off to poop or puke whenever I need to.
I know, it could be much worse. I am very grateful that I do not have cancer, and I am not terminally ill. But in my life, in my world, this is a big deal. My daily life is impacted, my future is uncertain and things have changed.