I'm in the hospital AGAIN. They screwed up my meds AGAIN (this is not the first time). Thank god I sneak my own in my purse, otherwise I'd get NO sleep. I'm in the ER, where I have been all day. Who knows if I'll ever get admitted to an actual room (it's almost 11:00 pm now) with a bed that will help relieve the pressure, even a little bit. Lying in one spot on my back is painful enough for so many hours, never mind on these beds.
I went over my meds on my chart, individually, with an RN earlier. Everything was settled. Everything was ordered. Yet an RN just came in here with my "bedtime meds" and they were so wrong. Like, not the chart I went over earlier (I corrected some amounts, yet the wrong ones were brought) and they were missing, oh, 5 pills. Which they don't have and they say were not ordered for me and to "talk to the doctor tomorrow". FUCK I HATE HOSPITALS.
I'm here because of a bladder infection. Seriously! I'm pretty sure I've had the same one for a couple months. It's antibiotic resistant, so I finally brought myself in to the hospital to get on IV antibiotics. I've tried other pills doctors prescribed me ("it's antibiotic resistant, but we'll try this one...") and every natural and homeopathic remedy known to mankind, but it wasn't clearing up. The burning got so bad down there, we called paramedics to bring me in this morning. An IV is such a huge hassle, it was my absolute last resort. It would be nice if they could just set you up at home with them, but no, I have to be here. I don't even know when I get to go home - I get another dose of IV antibiotics tomorrow afternoon.
I'm going to have to upload this when I get home, by the way. I have no wifi here, and my old cell phone bit the dust and I can't even use anything to contact anyone. ACK! All my lifelines are cut off! My caregiver Anna has been a lifesaver. She helped me get here today and came back tonight to set me up. She'll be back in the morning with coffee and a scone. I've left her with phone numbers to contact everyone, since I can't! Thalia is off this weekend, so Anna has my back. No shower tomorrow morning as I normally would! YUCK!
Saturday, March 14
They finally got me admitted to a room this afternoon. Wow, over 24 hours in the ER! I am awaiting my second dose of the every-24-hour antibiotic and am hoping they get my bedtime meds right this time. Oh, and I get a needle in my belly for blood thinners, too. Since I'M NOT MOVING.
My dad took my cell phone in today to get that working again, so at least there's that. I can text people. At 40 cents/minute, I'm not calling anyone. I also got a private room. That's a positive. As Thalia said, "at least it's a PRIVATE hell". I'm in a bed with that air mattress that moves, to prevent pressure sores. Not that it helps MUCH, but it's better than the bed I WAS in. I need a monkey bar, though. Badly. But of course physio has to order it, and they're not in until Monday.
It doesn't sound like I'll be getting home before Monday :( I need a lot more of this antibiotic. The burning is still CrAzY and it should be a lot better by now. I hope this second dose helps, the doctor said it's super strong and should! I think I left it too long and had too many useless antibiotics in my system. So now I need to wipe the slate clean.
Anyway, it's after 4:30 now. Dad is coming back with some decent food and a couple things from home I need. Anna will be here around 7:00 to give me a bit of a rubdown and wash my back. I'll also need an enema. Being bedridden and bowel movements don't mix, by the way, and I need to get this out of me!
Later that night...
Thalia came too, and her and Anna just left. I never did get my fleet enema, apparently a doctor has to order it and it's Śaturday night, so... I did, however, get a couple other things. A big chair so we can use the lift and move me over there sometimes, AND a bigger bed. Not as wide as at home so I still can't roll over by myself, but better than I had.
Oh, a doctor was just here, and told me the phosphate in the fleet enema interacts with my antibiotic. So, there goes that. He also told me the amount of stuff I take for sleep isn't helping me sleep. Newsflash! I sleep terribly anyway, I guess that's not helping much. Sigh. So he's giving me less because they've never seen results with more! Okay, fine. At home I split them up differently throughout the night and get an hour or two at a time.
Anyway, when Anna and Thalia were here we were talking about my death and how hard it's going to be on everyone, especially my family. It tears me up because it's a choice I'm making, and I don't want to hurt them. But for me? IT CAN'T HAPPEN SOON ENOUGH. Oh my god. I wish it could be now. Especially now that I'm once again in a hospital bed. Nobody can understand the pain and suffering I'm going through here!
Sunday, March 15
Wow, this is going to be so long before I can post it!
This morning Anna came and with some help, got me showered. Not an easy task for anyone, me included, so cold and uncomfortable!! But all's well that ends well, as I'm clean and dry now. However, the doctor just came in and said I'd be here for at least a couple more days. ARGH! They're going to change my Foley catheter sometime today, they said that might help. These antibiotics should be working by now and the fact they're not is worrisome. This is the strongest they've got! If this doesn't work, I have one hell of a resistant infection happening here.
Evening - changing my catheter didn't help. I'm still burning :( tomorrow is Monday, so I'll be assessed by physio and also psych... I made the mistake of telling my doctor when I got here about my plans when that law comes into effect. However, it's NOT law yet, so in the meantime they follow protocol. That may be another reason I may be here longer. FUCK. Psych has to assess me and be sure I'm fit to go home, or I'll be checked into the psych ward again. FUCK. Me and my big mouth. I need to tell them whatever they need to hear to let me out of here! If they can send me psychologist who does home visits, I'll absolutely take that. I don't want meds, but I could certainly use someone to talk to. I need to cope for another year.
Anyway, I'm set up for another night in hell...
Monday, March 16
I officially have e-coli in my urine. Cleanliness is so important!! It's difficult when you need to rely on others to clean stuff.
Today was busy and hellish! The O/T came in and the first thing I said was "get me a monkey bar over my bed!" She asked for photos of my setup at home, and that they'd try to replicate it best they could and get me back to my "baseline" (how long am I expected to be here?!?!) then she left. No physio, no nothing. Òh, but apparently she "assessed" me and that's good enough. Then I got a totally lousy excuse for a sponge bath. Then a doctor from psych came in and talked to me, I think it went well. She said she'd be back later with another doctor. Then my dad came, and Thalia messaged me from my apartment, so I asked her to take photos and email them to my dad. He then promised to print them and come back later.
Then Thalia arrived, and was starting to stretch me when the psych doctors walked in. Because I had talked about her in my first interview, that doctor took her out in the hallway and they spoke. It's always good when Thalia talks to them, it helps them see I'm not crazy lol. While I was talking with them my mom arrived! It's been busy. After psych left, I visited with mom and she played with my ultra-fancy bed. She found a vibration setting so I got a bit of a massage!
Then she left, and real hell began. I'll try not to get into details, but I spent over an hour trying to have a bowel movement, with two nurses, a couple water enemas, manual de compacting, and a difficult clean up and bed change. Then I was set up for supper, and my friend Shawna walked in. Just in time for me to feel sick to my stomache and have a bout of diahrrea. So then came another difficult clean up and change. Now I'm lying here with no gown (I think they got tired of changing it) and a diaper in case it happens again. I LOVE MY LIFE.
Anyway, while that was going on, Thalia arrived. Then my dad. Then Shawna left. Then dad dropped off the printed photos and left. Then Thalia set me up for the night, and she left. So no stretches today, rub down, or Japanese Mint oil on my sore muscles, as there was no time without Thalia being interrupted. ARGH it will be an even rougher night. Tomorrow will hopefully be better
Tuesday, March 17
I got wifi tonight! I'll upload this.
Today was a diahrrea day. Dad brought me Imodium and Thalia brought me burnt white toast. I'm going home tomorrow around 5:00, and I don't want this following me!!! I'd rather be constipated for a few days. This clean up isn't easy for anyone. I think I had four bouts.
Five days on this antibiotic is the maximum, so I better be cured. I'm still burning but I'm hoping it's partly in my head from being in this position and will feel better once I'm in my own bed. Diahrrea doesn't help... It's how I got e-coli in my urine to begin with! And they never clean you properly in a hospital. Swear to god. I don't know how these nursing assistants passed their exams!
Anyway, transport was booked for 1:00 and then a psych doc came in here freaking out, "we need more time to gather resources! Dr. Mohan is working so hard to set stuff up, I know it's really frustrating for you, but we need more time." They think if they can get my pain under control that would make my life better. Sure, perhaps, but not THAT MUCH better. And I've tried everything for pain, they don't work. But they swear they will think of something, so I will let them try.
Anyway, it's time for me to sleep. Paramedics will bring me home on a stretcher and lift me straight to my chi machine! After that I'll get lifted to my own bed and start fresh on Thursday with a shower. I'll use my lift for awhile and practice standing and exercise to get my legs back. Wish me luck!
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