How to I get hospital staff to understand my needs?

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I'm having a hystorectomy in six days, it's all arranged. The doctor said the averege stay is 24-48 hours. I can't tolerate any kind of noise from a TV or radio. How to I get the hospital staff to understand that if my room mate has their TV or radio on, I will have meltdowns?

Last edited by PunkyKat on 06 Jan 2011, 1:18 pm, edited 1 time in total.

i recommend bringing head phones with ur own music and noise cancencing head phones or ear plugs for other times

I can't wear headphones. They don't block out noise one hundred percent and the feel of them sets off a meltdown. That's what everyone keeps suggesting but it dosen't work. I need scilence when I have meltdowns. I've tried that in the past with no sucess. Ear plugs aren't effective.

Sample Medical Letter

Write it out and give a copy to your anesthesiologist and to your nurse. The anesthesiologist is in charge of your recovery and should be able to help out. Doctors appreciate you giving them information, and thinking about it clearly beforehand is better than trying to remember what's up while you're all upset about going into surgery. And you'd be in the room before you go into surgery so you can hand your note to the nurses then.

Wouldn't the letter just give them an excuse to shoot me up with more Paxil when I get upset?

Put in writing what drugs you do not wish to be given.

Hospitals usually have social workers to help patients. How about calling the hospital and asking to speak with a social worker, explaining your concerns, and seeing if he or she has any suggestions to help you?

I don't know what hospital it is yet and my parents keep telling me if I go in and dictate things they will not let me have it anymore because it is an "elective" surgery. I had to beg the gynocologist to let me have one. I practicaly hand to go down on my knees. My mom is threatning to have the surgery cancled if I keep asking her questions like this and if I don't "behave myself". My mom says I will probably only be in the hopsital for one day and to basicaly "deal with it". How to I explain to her sometimes I can't "deal with it" for a second? Keep in mind, my mother is somewhat of a "curbie". How do I get my parents to realise these are very real issues for me and not just wanting the "penthouse plaza room" at the hospital. I would be happy if it were cockroach infested as long as it was private.

My mom is saying if I'm this worried about someone not turning the TV off or someone talking too loud, I should have the surgery called off. I wish she would at least show some sympathy. If I do have to stay in the hospital, I am actualy looking foward to it because I'll have a break from her if I can convince her to let me stay by myself. If I tell her this, she'll probably snap and call the doctor and tell them to call off the surgery.

Last edited by PunkyKat on 05 Jan 2011, 9:20 pm, edited 1 time in total.

You're getting a hysterectomy without it being necessary???

According to my mother is is not necassary. But my periods are black and last for months. A hystorectomy is in my best intrest. My periods make me anemic. . My phycatrist even said birth control wouldn't be in my best intrest because it would mess up my horomones even more and make my mood swings worse. I wonder if I truely do have mood swings or if it's just because I'm not getting my needs met. Anyway, if I couldn't get a hystorectromy legaly, I'd just stop eating and force my body to stop menstrating or something drastic. I'm sick of all these doo gooders who think I may want children someday. If I had got pregnant, I think I would force myself to abort it or at least kill it shortly after birth. The sensation of femeine products makes me have month long meltdowns and can't sleep because of how much the sensation bothers me. I've tried everything. You still have periods with birth control and with my hormones already being f****d up, I can't take them. A hystorectomy is in my best intrest regardless of it being "necessary". We spay dogs and it is not nesassary. Can we please get back to the original topic?

Last edited by PunkyKat on 05 Jan 2011, 9:31 pm, edited 1 time in total.

This may not be a bad thing in the short term. I say this only because a hysterectomy is major surgery and you don't need to have complications with your incisions and such. I don't know the details of your meltdowns but if they are at all physical, you could tear your incision. It might be better to be in a drug induced calm for a few days. Call it a mental vacation to la la land.

goodness, anbuend, do people really read (and more importantly FOLLOW) your instructions included in your letter?

I have a medic alert bracelet that says succinctly "I have Autism and may not immediately react to your commands/requests" but I can't ever remember anyone reading it even when I am speechless and holding it out for them to read.

Merle

When you go into the hospital go an hour or two early so you can give them enough time to switch your room. If they are in the middle of a room shortage they will put you where they want. I got stuck in a ICU for five days because they did not have any single rooms for me due to a room shortage. I have really good insurance so they let me stay in ICU since there were five rooms sitting unused. You might get lucky. But seriously come in early and be nice.

Tell them your blood pressure and stress levels will increase if you are around people you do not know due to your Aspergers. Also let your doctor know about social anxiety or even print out some things about Aspergers you would be suprised how many medical experts have know very little about autism. What ever you do not have a hissy fit over anything the nurses will get you back. One of my former co-workers wives was a nurse and she has some funny stories about messing with pain in the ass patients. Good luck.

Last edited by Todesking on 05 Jan 2011, 9:47 pm, edited 1 time in total.

There's the patient information intake stuff they make you fill out weeks before surgery. Before the surgery, they go over all that again just to be sure it''s accurate so they won't give you any meds you are allergic to. You could tell them while they are finding this stuff out about needing a room of your own and why. When the staff are filling out those forms is the time to mention autism.

If I don't get a hystorectomy, I'm probably going to need an epic blood transfusion every month. I used to think most people were just big sissies but aparently I lack the ability to feel physical pain. Well, what normal people would call pain. I had to have blood drawn and the bandage bothered me more than the needle "jab". I had my wisdom teeth removed with a local and everyone kept telling me I was such a trooper. I thought they were just sissies.

I just tend to discoiate during my meltdowns. I'm worried something is going to be the straw that breaks the camel's back and my personality is going to split. I've tried taking drugs to make me calm and they did the exact oppiste of what they were supposed to do. I have to be extra careful about my paxil dossage because if it isn't just right, I have horrible panic attacks FROM the paxil. If I don't get panic attacks, I get horrible dizzy spells where I can't stand up without falling. The only physical meltdowns are just when I have to teach some jerk to respect my personal space. This salesman would not stop following me and being persused creeps me out a lot. I was afraid he was going to follow me to the car and get in until I bought his sented oil. I showed him my middle finger and fourtunatly that got the message across. If it didn't, I was afraid I was going to have to kick him in the privates.