Illness
I haven't talked about this in detail anywhere else and I want to, so I guess the best thing is to blurt it all out here. This is way, way TMI (and occasionally humiliating), but I am still trying to process everything.
So,
I started feeling kind of off one day and went off of food. I had intermittent pain in my upper abdomen. I had no idea what was wrong with me and tried taking antacids and anti-gas things to no avail. Every time I ate, I felt sick. This went on for days, degenerating until all I would put in my mouth were smoothies and crackers. Then I stopped eating entirely, unable to even take water without feeling sick. After three days of that, I finally went to the doctor. I felt so shitty I even let them draw blood. I went home with no answer, but a promise they would contact me when the bloods were back.
The doctor told me I needed to try to eat, so T made me some plain pasta. Later that night, I started feeling even worse. The pain in my abdomen went through the roof and I started throwing up, clearing out everything I ate and then some. Tristan freaked out because I was throwing up blood and called an ambulance even though I was still begging him not to (I HATE medical stuff/doctors/hospitals/needles/etc).
By the time the first responders came, I was pretty much insensible. I remember very little for the next five days. The pain was overwhelming, the worst thing I have ever felt in my life, straight through my abdomen and into my back. I was sweating and clammy and couldn't breathe and T says that the only thing I said whenever they asked me anything was "it hurts".
Apparently the fire department are the first responders here and if you need transport to a hospital, they have to call an actual ambulance for you. I wasn't responding, so T said yes. I vaguely remember more people turning up. I don't remember what any of them looked like - I generally felt like I couldn't open my eyes. I was put onto a stretcher and wheeled out of my building and put into an ambulance. I don't remember that or the ~20 minute ride to the hospital (I went to UW, which is affiliated with my doctor, not the closer one) at all. It's all just lost to a haze of pain.
I remember being in the corridor on the stretcher because they were busy and despite what I felt like, I was not an emergency. I have told people things like that a thousand times when I worked in ERs and now that I've been on the other side of it, I feel massively guilty, even when there just aren't enough beds. I remember them having me sign things, even though I was SO CLEARLY totally out of it and T was with me (he came in the ambulance) and is legal to sign for me. I still don't know what I signed, T apparently authorized my treatment (I don't remember that at all - no registration or insurance bits).
When I finally got to a room they tried to rouse me and I guess I was in a state. Low blood pressure, fast heart rate, low O2 sats. Then finally, FINALLY they shoved an IV in me and hit me with a dose of Dilaudid. And then finally, FINALLY I had some pain relief.
They took blood too, and my doctor later told me that whatever it was that measures what was wrong with me had gone bananas. The blood they had taken from me earlier that day had shown it at a normal level (20-40). I was at 8,000 in the ER. My some happy coincidence, the doctor that saw me in the ER was a classmate and friend of my doctor, and they talked about me and she clued him in that I was afraid of needles. He apparently joked that he had "bad news for me", but he did put it in my chart and they restricted themselves to one blood draw a day for the whole stay.
I got admitted and sent up to a room. I had an IV and they ordered me some sort of on-demand pain med thing - I could hit a button and get a dose every five minutes, up to 6 an hour. I got hooked to that and to the oxygen in the wall. At this point I remember freaking out and telling T I was fine and he had to go home and get some sleep - he had work in the morning. I later found out that I was telling him that at 8am. The ambulance had arrived at 11pm. I remember about fifteen minutes of time between those two points.
I threw up two more times, both bloody while I was in my room.
The next five days are a blur to me. Apparently all I did was sit in my bed (it adjusted, and I didn't bother moving it) with my glasses on and my eyes closed. You couldn't tell if I was awake or asleep. It was literally too difficult to open my eyes. I remember only a few things with stunning clarity:
- I told them I was on Effexor and needed my pills. I did not get pills until the second full day and this STILL makes me really angry. Effexor is one of the meds that you don't skip doses on and I don't think my body needed to be any more out of whack than it was. This was the only example of actually bad care, but Jesus does it piss me off now. I also laid into T after I was out about not being a better advocate for me - if it had been him, I wouldn't have shut up until someone brought the meds.
- They wrote on my care plan board that I would likely be home in 3-5 days. Ha ha ha ha.
- I had an MRI and a CT scan, both new experiences for me. I discover I am not claustrophobic.
- I was not allowed to eat or drink anything in case I had to go into surgery. I couldn't have cared less about eating, but I was so intensely thirsty I remember begging for an ice chip.
- They wanted to put in a PICC line, which I consented to and was ready for... until they gave me an information leaflet at which point I saw a picture and had an actual panic attack and refused. They weren't super pleased, but apparently if you're with it enough to object, they can't make you do it.
Life fell into a kind of rhythm. The doctors came at 5am and 2pm to check on me. There were regularly students with them. I got blood drawn every morning at 7am. Nurses came at 9am and I got meds. Shift change for nurses was twice a day and they always walked around and did in-room verbal hand overs.
The doctors explained what was wrong with me (with pictures) every day and I didn't start taking it in until about a week had passed. Official diagnosis: necrotizing pancreatitis. Apparently as many as 50% of patients with necrotizing tissue die (they did NOT tell me this, I've looked up loads of stuff since then). They wanted to remove my gallbladder, but I developed a pseudocyst that made it too dangerous to operate.
I was on a host of meds. I got jabbed in the stomach twice a day with anti-clotting stuff. I also had to wear these ridiculous paper boot things that inflated and deflated when I was laying down that apparently help too. I was on two kinds of stool softeners, the Dilaudid on demand, Tylenol on a schedule, Omeprezarole, my Effexor, and some other stuff that I can't remember now. I feel like I took a lot of drugs. I kept imagining how horrified my mother would be by everything I was willingly tossing into my body.
At some point I was taken off restrictions and they wanted me to eat and I couldn't bring myself to. Everything that went in or out of me was measured and tracked. I was getting a ton of IV fluids and I didn't hit saturation with that until about a week in. They obsessed over how much I peed and if I was pooping (spoiler: I wasn't - opioids are great!). I wasn't cathed, so I had to call a nurse every time I wanted to go to the toilet. And they had to unhook me from the O2, and the O2 monitor, and unplug my IV from the wall, and, and, and. It was really hard for me to steer the IV thing - the floor was uneven and it was heavy. It rolled like mad.
They threatened me over food - if I didn't start eating, they were going to put in a feeding tube. I started trying harder, but I still didn't have any kind of breakthrough for a few more days. They tried to get me to take liquid meals, but I couldn't stand those either. The nurses and doctors wanted me to eat LITERALLY ANYTHING and let T bring food in from outside. The hospital dietitians had put me on food restrictions with the kitchen that literally no one could define. It was always a surprise if I would be able to get what I tried to order or not. I ate the same thing every day for weeks: applejacks (cereal) that T brought me + milk for breakfast, a subway sandwich (what I could stomach of it) for lunch (I love them, and it was the only thing that tempted me), and then this turkey, mashed potato, and green bean dinner from the cafeteria. It was fine, but nothing to write home about.
I had been wearing the dress I'd been brought in wearing for the first week or so. At that point they decided I needed to shower (I did not disagree, tbf). It was surprisingly humiliating - four women stood around while I huddled on a stool in the shower and they had to do everything for me - I couldn't even lift my arms. I got relegated to hospital gowns after that and all of their wonderful open-in-the-back-ness.
They got an physical therapist harassing me soon after that. They wanted me up and walking. It was a huge ordeal to get ready to walk - they had to unhook me from the wall in about a million places and get me up. I had to get belted into my gown - both so it wouldn't flap open and display my butt to the world and also to give my "walker" something to hold on to so I didn't topple over. The first time they got me out of the bed, I made it about ten steps down the hallway and then burst into tears and had to go back. Nothing had ever been as hard as those steps, and I was utterly wiped out.
I gradually got better at this, but it was such hard going. Everything is still really difficult for me. I used to lift weights and could lift 70 pounds without blinking and wander around with it. Now I get winded walking to the elevator from the car with a case of cat food.
The doctors started obsessing over my lack of bowel movements and treated me to twice daily "it's very important that you go" speeches. I was like "it's not like I'm TRYING to hold back, here. I don't know what you want me to do about it." I was given a range of things, none of which were pleasant, until I started going again.
Around this point I was saturated with liquids. They turned my IV down some, but I was puffy everywhere and had to pee every 30-60 minutes. I would wake up and need to go THEN and I had to call a nurse and wait for them and it was just not happening. I started trying to get myself up and go which gave them all fits. I peed on the floor a few times before I gave up and had T start sleeping there with me so he could help me unhook from everything. This was an utter nightmare and literally some of the most humiliating moments of my life. I spent a lot of time crying.
Edit: LJ somehow managed to post this before I was finished writing it! I guess part two is to come.
So,
I started feeling kind of off one day and went off of food. I had intermittent pain in my upper abdomen. I had no idea what was wrong with me and tried taking antacids and anti-gas things to no avail. Every time I ate, I felt sick. This went on for days, degenerating until all I would put in my mouth were smoothies and crackers. Then I stopped eating entirely, unable to even take water without feeling sick. After three days of that, I finally went to the doctor. I felt so shitty I even let them draw blood. I went home with no answer, but a promise they would contact me when the bloods were back.
The doctor told me I needed to try to eat, so T made me some plain pasta. Later that night, I started feeling even worse. The pain in my abdomen went through the roof and I started throwing up, clearing out everything I ate and then some. Tristan freaked out because I was throwing up blood and called an ambulance even though I was still begging him not to (I HATE medical stuff/doctors/hospitals/needles/etc).
By the time the first responders came, I was pretty much insensible. I remember very little for the next five days. The pain was overwhelming, the worst thing I have ever felt in my life, straight through my abdomen and into my back. I was sweating and clammy and couldn't breathe and T says that the only thing I said whenever they asked me anything was "it hurts".
Apparently the fire department are the first responders here and if you need transport to a hospital, they have to call an actual ambulance for you. I wasn't responding, so T said yes. I vaguely remember more people turning up. I don't remember what any of them looked like - I generally felt like I couldn't open my eyes. I was put onto a stretcher and wheeled out of my building and put into an ambulance. I don't remember that or the ~20 minute ride to the hospital (I went to UW, which is affiliated with my doctor, not the closer one) at all. It's all just lost to a haze of pain.
I remember being in the corridor on the stretcher because they were busy and despite what I felt like, I was not an emergency. I have told people things like that a thousand times when I worked in ERs and now that I've been on the other side of it, I feel massively guilty, even when there just aren't enough beds. I remember them having me sign things, even though I was SO CLEARLY totally out of it and T was with me (he came in the ambulance) and is legal to sign for me. I still don't know what I signed, T apparently authorized my treatment (I don't remember that at all - no registration or insurance bits).
When I finally got to a room they tried to rouse me and I guess I was in a state. Low blood pressure, fast heart rate, low O2 sats. Then finally, FINALLY they shoved an IV in me and hit me with a dose of Dilaudid. And then finally, FINALLY I had some pain relief.
They took blood too, and my doctor later told me that whatever it was that measures what was wrong with me had gone bananas. The blood they had taken from me earlier that day had shown it at a normal level (20-40). I was at 8,000 in the ER. My some happy coincidence, the doctor that saw me in the ER was a classmate and friend of my doctor, and they talked about me and she clued him in that I was afraid of needles. He apparently joked that he had "bad news for me", but he did put it in my chart and they restricted themselves to one blood draw a day for the whole stay.
I got admitted and sent up to a room. I had an IV and they ordered me some sort of on-demand pain med thing - I could hit a button and get a dose every five minutes, up to 6 an hour. I got hooked to that and to the oxygen in the wall. At this point I remember freaking out and telling T I was fine and he had to go home and get some sleep - he had work in the morning. I later found out that I was telling him that at 8am. The ambulance had arrived at 11pm. I remember about fifteen minutes of time between those two points.
I threw up two more times, both bloody while I was in my room.
The next five days are a blur to me. Apparently all I did was sit in my bed (it adjusted, and I didn't bother moving it) with my glasses on and my eyes closed. You couldn't tell if I was awake or asleep. It was literally too difficult to open my eyes. I remember only a few things with stunning clarity:
- I told them I was on Effexor and needed my pills. I did not get pills until the second full day and this STILL makes me really angry. Effexor is one of the meds that you don't skip doses on and I don't think my body needed to be any more out of whack than it was. This was the only example of actually bad care, but Jesus does it piss me off now. I also laid into T after I was out about not being a better advocate for me - if it had been him, I wouldn't have shut up until someone brought the meds.
- They wrote on my care plan board that I would likely be home in 3-5 days. Ha ha ha ha.
- I had an MRI and a CT scan, both new experiences for me. I discover I am not claustrophobic.
- I was not allowed to eat or drink anything in case I had to go into surgery. I couldn't have cared less about eating, but I was so intensely thirsty I remember begging for an ice chip.
- They wanted to put in a PICC line, which I consented to and was ready for... until they gave me an information leaflet at which point I saw a picture and had an actual panic attack and refused. They weren't super pleased, but apparently if you're with it enough to object, they can't make you do it.
Life fell into a kind of rhythm. The doctors came at 5am and 2pm to check on me. There were regularly students with them. I got blood drawn every morning at 7am. Nurses came at 9am and I got meds. Shift change for nurses was twice a day and they always walked around and did in-room verbal hand overs.
The doctors explained what was wrong with me (with pictures) every day and I didn't start taking it in until about a week had passed. Official diagnosis: necrotizing pancreatitis. Apparently as many as 50% of patients with necrotizing tissue die (they did NOT tell me this, I've looked up loads of stuff since then). They wanted to remove my gallbladder, but I developed a pseudocyst that made it too dangerous to operate.
I was on a host of meds. I got jabbed in the stomach twice a day with anti-clotting stuff. I also had to wear these ridiculous paper boot things that inflated and deflated when I was laying down that apparently help too. I was on two kinds of stool softeners, the Dilaudid on demand, Tylenol on a schedule, Omeprezarole, my Effexor, and some other stuff that I can't remember now. I feel like I took a lot of drugs. I kept imagining how horrified my mother would be by everything I was willingly tossing into my body.
At some point I was taken off restrictions and they wanted me to eat and I couldn't bring myself to. Everything that went in or out of me was measured and tracked. I was getting a ton of IV fluids and I didn't hit saturation with that until about a week in. They obsessed over how much I peed and if I was pooping (spoiler: I wasn't - opioids are great!). I wasn't cathed, so I had to call a nurse every time I wanted to go to the toilet. And they had to unhook me from the O2, and the O2 monitor, and unplug my IV from the wall, and, and, and. It was really hard for me to steer the IV thing - the floor was uneven and it was heavy. It rolled like mad.
They threatened me over food - if I didn't start eating, they were going to put in a feeding tube. I started trying harder, but I still didn't have any kind of breakthrough for a few more days. They tried to get me to take liquid meals, but I couldn't stand those either. The nurses and doctors wanted me to eat LITERALLY ANYTHING and let T bring food in from outside. The hospital dietitians had put me on food restrictions with the kitchen that literally no one could define. It was always a surprise if I would be able to get what I tried to order or not. I ate the same thing every day for weeks: applejacks (cereal) that T brought me + milk for breakfast, a subway sandwich (what I could stomach of it) for lunch (I love them, and it was the only thing that tempted me), and then this turkey, mashed potato, and green bean dinner from the cafeteria. It was fine, but nothing to write home about.
I had been wearing the dress I'd been brought in wearing for the first week or so. At that point they decided I needed to shower (I did not disagree, tbf). It was surprisingly humiliating - four women stood around while I huddled on a stool in the shower and they had to do everything for me - I couldn't even lift my arms. I got relegated to hospital gowns after that and all of their wonderful open-in-the-back-ness.
They got an physical therapist harassing me soon after that. They wanted me up and walking. It was a huge ordeal to get ready to walk - they had to unhook me from the wall in about a million places and get me up. I had to get belted into my gown - both so it wouldn't flap open and display my butt to the world and also to give my "walker" something to hold on to so I didn't topple over. The first time they got me out of the bed, I made it about ten steps down the hallway and then burst into tears and had to go back. Nothing had ever been as hard as those steps, and I was utterly wiped out.
I gradually got better at this, but it was such hard going. Everything is still really difficult for me. I used to lift weights and could lift 70 pounds without blinking and wander around with it. Now I get winded walking to the elevator from the car with a case of cat food.
The doctors started obsessing over my lack of bowel movements and treated me to twice daily "it's very important that you go" speeches. I was like "it's not like I'm TRYING to hold back, here. I don't know what you want me to do about it." I was given a range of things, none of which were pleasant, until I started going again.
Around this point I was saturated with liquids. They turned my IV down some, but I was puffy everywhere and had to pee every 30-60 minutes. I would wake up and need to go THEN and I had to call a nurse and wait for them and it was just not happening. I started trying to get myself up and go which gave them all fits. I peed on the floor a few times before I gave up and had T start sleeping there with me so he could help me unhook from everything. This was an utter nightmare and literally some of the most humiliating moments of my life. I spent a lot of time crying.
Edit: LJ somehow managed to post this before I was finished writing it! I guess part two is to come.