Neuromuscular In memory of Rose Marie.


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Old 10-03-2006, 10:40 PM #1
mamafigure mamafigure is offline
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Default OK, I give up

I have started far too many threads, but I seriously need help. I am beyond terrified for this surgery coming up. I know that many of you have faced much more difficult things - but this is a near impossibility for me. I am about ready to cancel my surgery.

The pain gets worse nearly every day (today was about the same as yesterday, but yesterday was the worst that it has been). I am working, but am having extreme difficulty, mostly sitting at my desk these days.

I registered with another forum and they try to help, but my friends are here.

No one knows what is causing this, so this one obgyn wants to take care of everything, hoping that the cause will disappear. I wasn't prepared for that.

I am so terrified of going to sleep, of being hooked up in any way to any tubing, to having drugs pumped into me, of losing my memory (ie versed), of staying overnight - even of laying down in a hospital bed. I am going crazy.

I talked to my gp. She gave me a generic zanax. I have taken 1/2 of 3 pills in the last week. It takes 1 1/2 hours to get to sleep, but then I am drugged out for hours.

I talked with a friend who is a counsellor. I have so many issues that she is going to try to concentrate on just 2. Sleep, and getting me to feel that making a decision about surgery is empowering. I told her that I would try in the sleep dept, and would work on visualization (which I do anyway) but there was no way I would ever see making a decision about surgery empowering. I feel like a rat caught in a trap.

I used to use a wheelchair for shopping. Now that is too painful.

Anyway, if you have some other advice, please let me know.

mama
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Old 10-03-2006, 10:51 PM #2
Curious Curious is offline
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gentle hugs {{{{{mama}}}}}}

i wish i had advice for you. i just wanted to let you know you were heard. i hear your pain. the thought of any type of surgery is scary.

i'm glad you have a friend who is going to help you. she is on the right track on visualization. making the choice to have the surgery, i see that as empowering. no matter how many dr's give you advice surgery, it is you who makes the choice over your body.

post this in other areas of the forum. the support is here. maybe on the general forum or sanctuary?

take care mama. i will come back.
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Old 10-03-2006, 11:02 PM #3
mamafigure mamafigure is offline
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Thanks so much. I cannot post in sanctuary, but maybe in general. I feel ashamed to admit how low I am, but thank-you for your kindness.
mama
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Old 10-04-2006, 02:00 AM #4
lexiathedragongirl lexiathedragongirl is offline
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Dearest {{{{{mama}}}}} I wish i could take the fear and pain away. I feel that what you are going through is beyond what any of us can help with; i can possibly understand a small glimpse of the where and why, but your counsellor friend is probably the best to help you through this. I know I duck and weave myself

But we are here and thinking of you, love you, and want you to find happiness and release from the pain and fear. It will be good, it will turn out for the better, it will help.

Thinking of you (((((mama)))))
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Old 10-04-2006, 02:44 AM #5
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((((((Mama)))))),



I know that feeling so well. I was so panic stricken just before my emergency gall bladder removal surgery that they were going to cancel the surgery. I couldn't stop crying. I was just about hysterical.

One of the doctors came over and asked me if I wanted to cancel the surgery. I told him to stop being an ***

I've had a few surgeries and miscarriages and things where I've had to be sedated. What used to happen was that I would become so depressed afterward that they had to keep me in the hospital a couple of days longer. Turns out it was a reaction to the sedation that they used to use. The anesthesiologist went back and looked at the record to see what they had given me so that he could use something different.

So ... I don't have that problem anymore.

What was causing me to be so upset just before the GB surgery was that no one knew where I was. I checked out of one hospital against doctors orders at 11PM and went through the EW in the hospital where my primary doctor practiced. No one knew I was there. And, for some reason, that just freaked me out.

This is gonna sound like such a simple solution -- but, believe me, it works.

Talk about it.

Arrange to meet the nurses and the anesthesiologists that will be taking care of you. Let them know how frightened you are. That way when you go into the operating room, you'll know the people that are going to be caring for you. And, they'll know you too -- know you as a person, rather than as a piece of paper in a medical record.

I understand that sheer, scared of the walls closing in, taking all your decision-making power away from you feeling -- I've felt that. And, I've come through it. You will, too, Mama.

Talk with everybody. Here, At home. At work. In the grocery store.

There's a kind of subtle role-playing way of discussing your 'issues' with everybody in The Universe -- they don't really realize the depth of what you're talking about, but, it helps you, nevertheless.

This is how it works: say you go to the grocery store and the clerk asks you how you're doing. Instead of saying 'fine' like you always do. Tell 'em you're freakin' losin' your mind -- you've got surgery coming up and you'd rather go on a date with The President So, what you're doing is making a joke and not letting anyone now how 'serious' you are. But, they get the message and they're usually willing to talk about a similar experience -- either their's or someone else's. Whether you're joking around or whether you're serious -- the talking about it helps.

This is another example: you tell someone, "I'm losing my mind. I'm trying to get all the housework done before I go in for my surgery and there just aren't enough hours in the day to get it all done. I wish I could hire a housekeeper for two days." They'll sympathize with you and maybe give you some suggestions.

I read in a book somewhere that -- tea and talking is Jewish therapy. you talk about a painful/bad experience over tea with someone until the experience becomes just words that you share with another human being. That's not anywhere near a direct quote; it gets the gist of it across though.

There are so many of us that share similar feelings and experiences. When you allow people to help you, those shared feelings and shared experiences become much easier to bear.

Bless you, sugar. BIG HUGS.

Barb
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Old 10-04-2006, 07:46 AM #6
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I woke up this morning to the best wishes of friends. Thank-you from the bottom of my heart. I am talking about it to everyone now, but I don't say exactly what the surgery is because it is very embarrassing to me (one person guessed it, but I swore her into secrecy and she told me a story that I cannot repeat so we're even).

It is a very foggy morning, and that's where my mind is. I feel rather foolish asking for so much attention, but I am so glad that you are out there so that I don't feel like I am languishing in the dark all alone.

Take care,
mama
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Old 10-04-2006, 10:45 AM #7
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((((((mama)))))))))

I wish I knew the perfect thing to say to help you. I do understand the feeling of terror about surgery and being sedated. I hae a few really bad teeth that I need to be sedated to get them fixed, and I flat out refused.

I know that teeth and sedation at the dentist is nothing compared to your surgery, but I wanted to let you know that I can relate to the sedation fears because I live them myself.

I like Moose's suggestion of getting to know the hospital staff beforehand. If I remember correctly, the hospital is not nearby for you, but if going there is too difficult, maybe talking to them on the phone would help?

I wish I could remember who gave me the following suggestion when I had to go for an MRI and I was terrified of the tube, but someone on the forums suggested that I bring the forum with me.

Write down everyones name from the forums and put it in my pocket, and whenever I get scared to think in my head about what that person would tell me. And as I go through the experience of being scared to also think in my head about what I will write to the forum when I get home, and then think about who would reply and what they would say. Then also think about how everyone elses day was going, what they would write about their day on the forum, and how I would reply to their day.

That really helped me a lot while I was in an MRI tube for over 2 hours. It gave me something to think about so that my anxious thoughts could not and would not invade my head.

I'm lighting a candle for you. I never light candles because of my cats, but I am going to go outside for a smoke and light a candle for you in the middle of my yard.

(((((((((hugs)))))))))

Take care of you,
Liz
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Old 10-04-2006, 10:58 AM #8
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Liz, Thank-you. I will write more later - need to open the library
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Old 10-04-2006, 12:07 PM #9
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hello, mama
I am one of those who hate surgery. I have had a few, since I am born with a neuromuscular disorder. I hate to be placed on my backside on a table under a lamp and let people handle my body,to lose control and let go.
Nothing can make me like it.
My solution is to talk about it with people, and tell myself: I am not there yet, so far I am home, so far I am just in the reception area, etc, trying to
postpone the nasty feeling till I am there at the point of no return.
If you find the surgery necessary and beneficial, remember the result will be a better future for you.
Sending you my thoughts, wishes, hope and friendship, we are many following you on the road.
Per, Norway
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Old 10-04-2006, 02:04 PM #10
mamafigure mamafigure is offline
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Liz and Norwegian,
Your ideas are helping. I think that I will printout the best wishes of my forum friends. I am also a procrastinator, so, Norwegian, it looks like there is a reason for being one.

Thanks for your friendship and your best wishes.
mama
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