One night a few weeks ago, I suddenly got a very high fever, uncontrollable shakes nausea, among other things. I decided to just wait, take some ibuprofen (which usually, for some reason, stops the shaking on the rare occasions when I have them) and sleep it off. So the next day when I still felt terrible and was still shaking and my heart was beating too fast I called an ambulance. To make this next part short, I was diagnosed with a kidney infection, bladder infection and blood infection as well as kidney stones that had been there for awhile but were apparently causing more of a problem. So, I got on antibiotics, stayed at the hospital, and after awhile I felt mostly okay. I was still having this really awful abdominal pain - I've had it for months now, and it's always there, there's never a time when it stops - but I was good enough to go home and finish out my antibiotics at home. So I did.
About a week and a half later, I had to call an ambulance again to go to the hospital because I had those exact same symptoms.
So I went back to the hospital. They couldn't figure out what was going on, they did cultures and tests but the doctors just had no clue. And they didn't know what was going on with my pain, either. But at least this time they actually tried to figure it out.
That requires a detour to explain it, I guess: So, a few years ago I was in the hospital. I had pressure sores and infections and a lot going on, and I got abdominal pain after a surgery in my abdominal area, and it was bad. It was the worst pain and it was constant and it caused nausea. But the doctors couldn't figure out what it was. They did tests and everything, came up with nothing, and got frustrated. Next thing I knew, the nurses were subtly (and not-so-subtly in some cases) treating me like I was looking for drugs and didn't actually have anything wrong. They apparently started writing notes about it as well, and my doctor saw the notes and believed them so she accused me of it as well.
I was pretty mortified. I didn't know how to let them know I was really hurting and not just making it up for pain meds. So they pretty much took my pain meds (which actually worked, at least for awhile) away and replaced them with non-narcotics that did not help my pain. They treated me like it was for my own good and they were just trying to keep me from getting access to narcotics so I wouldn't abuse them.
Until my doctor discovered a whole lot of cerebrospinal fluid built up in my abdomen in the spot where I had the constant pain. Needless to say, a lot of apologies were forthcoming and everyone could not have been nicer after the doctor found it. So that was a big oops on their part. And it's part of the story - I went to the hospital again this time with that history in mind. I got stressed out wondering if they'd even believe me or treat me like a drug seeker. And, like I said, they believed me this time Thankfully.
It turned out that I had MRSA this time. It's likely I got it from my hospital stay just a few weeks ago, but they wouldn't admit it. I had one nurse close the door and whisper that it probably did come from them, but it was so secretive. So more antibiotics. And I have to go back to the hospital in a few weeks for surgery on my kidney.
And it's just been really bad and really hard to deal with and I'm alone. I'm always alone. I just got in a fight with my sister tonight because she doesn't answer my calls or texts and we haven't hung out in, seriously, three years. And we used to hang out all the time. I feel like I'm dealing with so many things and then every day something new comes up, something else for me to worry about, and I'm doing it all by myself and even my own family doesn't want to talk to me.
They finally got doctors to work on trying to find out why I'm having this pain. At the outset I was just so fucking happy that they acknowledged that I'm telling the fucking truth. They did their tests and found nothing. Then they called my surgeon to consult with him about it since he's seen me so much. Well, I got kind of lucky, because he wasn't able to come in and one of his partners there saw me. I'd never seen him before so he looked at all my scans fresh. He told another doctor, "I'm not surprised he's in pain - I'm surprised he's not in more pain."
I have scoliosis and I had surgery for it when I was fifteen and it paralyzed me. Because they tried to take some of the hardware out after I became paralyzed in order to see if I could get the use of my legs back, I've always had a curved spine even after the hardware was put in. But it's been getting a lot worse over time.
So my doctor looked at the scans and saw the hardware out of place and in a position to hurt me, among other things I didn't fully understand, and he immediately said it's probably spinal nerve pain from problems with that. He says I need to see the doctor who did the surgery on me to see if he thinks I need another surgery or something. So, if you're keeping score, I have to go back to the doctor who paralyzed me from the waist down for life to ask him if I need him to do another surgery on me to help relieve this pain that my doctor is now calling chronic pain.
I'm just scared to death here. I don't know what to do or what to think. They are talking about putting me on a pain pump, permanently. I would be pushing pain meds into my system for as long as I have the chronic pain. At the very least I would be taking a lot of pain meds. I mean, I'm 27 years old. So yeah, I'm scared. I don't know how to live with constant pain. And I once joked that I wish I could have Dilaudid all the time, because it's fucking amazing, but I wouldn't have wanted something like this to happen.
And then, I am not going to have another surgery on my spine, especially not from the same surgeon. They're already saying my spinal cord is fraying, or curving too much, I'm not really sure, but they've said I need to be careful about falling down because it could get severed and I would die. Just like that. And this is the area on which they'd like to do surgery, when it paralyzed me for life the first time? But then there's the thought that I might actually need it. I don't know what to think.
I worry so much about my curved spine already. If I fall asleep on my side am I going to inadvertently crush an organ or a lung in my sleep? Will I just struggle to breathe one day? And that was before this happened. Now I'm just lost and totally terrified.
This is all just too much. You can get really sick from MRSA. You can get deathly ill when infection is in your kidney and bladder and blood and you have kidney stones interfering. Now my pain might cause me to need a spine surgery that could kill me or worse. I might always feel like this, forever. I might have to get on a pain pump forever just to be able to cope with how much it hurts. And repeatedly going back in the hospital, I mean in two more weeks will all of this resurface? Will I just go back? I could die from this stuff and I just feel like this is my life and I'm scared this is how it will be for the rest of my time here. I'm scared.
I know there are a lot of people here who genuinely care about me, and I love you back, and just wanted people to know that things with me are bad right now.