oh starz,

i'm sorry you went thru that. i'm an RN & still have had problems with my hospitalizations no matter how i think ahead and plan. but i can offer a few things to think about.

have a current list of your meds with the doses & times you take them.
you must impress upon your dr how important your regimen is to your well-being.

find a person to advocate for you. they must be strong & willing to be at the hospital as much as possible.

if there are problems you MUST speak up. yell if needed. ask for the charge nurse. the nursing supervisor, the dr. call the dr yourself from the hosp.
there are also people who are patient advocates in the hospital setting. ask to speak to one. you can even try to contact the chaplain as a go between.

try to have family or friends take shifts & stay with you as much as possible during a hospital stay.

with all my experiences being hospitalzed & being an RN i still have problems. with my last hospitalization i told myself that something unexpected will come up so don't expect things to go swimingly. and, they did. it was my big mouth & complaining that helped. and, don't be afraid to tell your dr if something isn't right. chances are he probably doesn't even know.

i hope you're healing and heading back on track.

I had several surgeries from 2011 through 2013. A hysterectomy and then others due to issues from that.

The first surgery I had was, I guess, my "practice run" with the hospital staff. There was a nurse in my room what seemed like continuously for the first day. I'd mention I needed my Baclofen and they'd either tell me "it's coming" or ask me how to spell it or just tell me they'd pass it along to whoever these things get passed along to.

After the third missed dose I was literally climbing the walls. Literally. I knew my little pill bottle was sitting on the dresser at home but it might as well been locked up at the pharmacy.

I never got a Baclofen pill while I was in the hospital. I was only there for two days but I had to stop taking it a full 24 hours before my surgery so by the time I got another dose it was four days. I vowed never again.

Next surgery I packed my "contraband" well and made sure it was somewhere I could get to it. It would make the nurses mad but I didn't care. I knew they wouldn't take my requests seriously and I was right.

I checked with my neurologist and with the hospital anesthetician to make sure I could take baclofen with the meds I was given while in the hospital ad they all agreed that it was fine.

I will never again put myself at the mercy of the hospital staff to get my needed MS meds.

After having been in and out of the hospital over the last few months, I'm with Kitty about packing your own meds. and the good advice of having an advocate.

To that end, I now have an Advanced Directive that spells out in minute detail to my advocate and medical personnel what I will and won't allow, as well as how and when they can do it. It keeps things on track even when or if I can't speak or act for myself but also when I can, especially with respect to medications and treatments.

It isn't too difficult to write one up and there are several programs available on-line that make them legal documents according to state or province. I did my rough draft with the help of "legal docs" and then had my lawyer check it and do the final copy. Doing one ahead of time, when things are not an emergency situation, allows you to really think through many potential situations and make decisions for yourself so that you can relax more easily when/if you need care.

My GP, appointed advocate, family members and lawyer all have a copy; and I take 2 copies with me when I need to go to the hospital. One is given to admissions or the nurse's unit where I'm put and one stays with me in the room on the side table in clear sight.

During my last stay in hospital, some of the nurses said that it would make things a lot easier for them and their patients if more people had one. My GP also supported my having one.

In short, I have found that it helps everyone get along better and helps to ensure that you get the care that you need and want, while preventing getting what you don't.

With respect to the shoulder pain, it isn't uncommon to get that after abdominal surgery, especially if it was done via laparoscopy. A fair amount of air is pumped into the abdominal cavity during such procedures and it is the remaining air that puts puts pressure on the diaphragm. That pressure often refers pain to the shoulder, as does bowel gases which are also often present after such surgeries. If it is the latter, using an over the counter stomach remedy with simethicone in it (Gas-X, Phazyme), will often help to relieve it.

Hope that you feel better soon .

With love, Erika

Thank you everyone, sad thing is I had my pills with me, had my cell phone with my schedule that I went over with the nurses as well, my family members were there for most of it, but we were all just kind of ignored. The worst was my final night in the hospital, I really thought they were out to kill me at that point, but I was also pretty much insane with pain by then.

I will definitely be drawing up some kind of document, and hopefully getting my neuro, primary and pain mgmt doctors to sign it to say "yes give this poor kid her DRUGS you crazy psychos!" But I guess a lot of it was my own fault, I didn't fight them hard enough, wasn't in much of a state to, but still I should have been more forceful. It's just I had foolishly thought my nurse and I going over everything the first hour I was admitted was going to take care of that.

But I also didn't mention above, I was in the ER for 6 hours before I even saw a doctor, and had, by the time the choose to give me something for pain, been in and out of consciousness, screaming bloody murder when conscious, for 7 hours all told, and started off Saturday morning already behind over an hour on my usual medications (that was when things started getting really hairy in the ER and the doctor really didn't have much of a choice but drug me or club me)

I mean we went to the ER at 2am and it was dead, spent an hour as the only ones in the waiting room, got a bed around 3am in the back, was sent for a chest x-Ray at 7 am (when I was supposed to take my pills) 9am is when the doctor finally got around to seeing me, 10 am I got an IV and pain meds, 11 am I finally got the ultrasound of the gall bladder and then boom admitted in less than 30 minutes to the hospital.

don't kick yourself. i honestly don't know what is wrong with hospitals/staff today. when i was an RN there was such a thing as a nursing care plan for every pt.

i think now you only see the RN when she's passing meds and that's all they do. the rest of the time you're cared for by an aide.

the first day after my back surgery when i got moved out of ICU to the floor the first comment my aide said to me was "my name is.....i have 12 pts all by myself today. i'll do the best i can.

meantime i'm flat on my back with 2 incisions; one front, one back. i was actually afraid for myself. many more snafus from my rehab experience but i won't bore you.

just do the best you can. i also think it's a good idea to take meds to the hospital. but, make very very sure that IF you take your own you're not in conflict with what the staff is giving you.