OT I give up (also posted in NM)

[mamafigure]

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

[stevem53]

Hi Mama..I dont know what kind of surgery you are going for..Forgive me if Ive read about it somewhere and forgot..Ive got so much on my plate right now that I dont know which end is up..Surgery is scarey, period..If this surgery is going to give you a better quality of life, then there is definately some hope in it for you..You will be in my thoughts and prayers, and I hope that you heal up quick and that the surgery solves whatever the problem is..This is not an easy road sometimes, and I certainly feel for you..If we only had the magic wand

[mamafigure]

Steve, you are always a friend to everyone. It is abdominal exploratory with a laundry list attached.

I hope that your life simplifies and improves, as you deserve it.
mama

[rosebud]

I don't know the story behind this post, so I'm shooting in the dark. I would say you are sleep deprived out of your mind..literally. Sleep deprivation has a particularly vicious effect on our whole being and is a downward spin. It makes EVERYTHING worse. My advice is stop whatever your doing, take the sleeping pills and crash out for as long as it takes your body to restore itself. There is no substitute for sleep. The alternative is psychosis I believe and you don't want to go there! Once you've had the sleep you NEED the rest will fall into place. I'm not an educated expert on the subject, but I am an experienced expert! I've been to the edge of my mind and its not a place anyone should ever go. Do whatever you have to do to make your body sleep! Then sleep until you can't sleep anymore and you feel like your back in the real world
.
good Luck and check in with us to let us know how your doing once your past this.

[MKane]

mama,

I can undestand your anxiety. There is a possibiity of DBS in my near future and I will have similar issues. Hwever, there have been many situations in the past that terrified me. Learning to face the fear and do it anyway has helped me gain confidence.

Good luck
Mary

[mamafigure]

Thanks to both of you.

I did take 1/2 pill last night and slept from maybe 1 or 2 until 6:30 when the phone rang, and then went back to bed until 8:30, so that wasn't too bad.

It is nearly 2 now. If I take a pill, it won't really work until 3:30. I should be at work around 10 or 11, so that doesn't really leave enough time.

I am truly terrified of hospitals, and begged them to move this up. I have had this fear for many years and it continues to get worse. I can face my demons in a flight/fright reaction if I can get it done quickly (more fright than flight).

This all sounds so melodramatic, but since I have about 3 weeks left, I don't think my chances of making the actual surgery are real good right now. But that still leaves me with the increasing pain.

I am off to bed.

[BEMM]

Dear Mamafigure, unless your doctors have rock sure reasons for performing surgery, I would, if I were you, avoid it at all costs. Unless you are more than 80% sure that surgery is necessary and that it will be of benefit to you, I think you are better off without such a drastic procedure. Unless several doctors - not surgeons but specialists in whatever you have that they feel must be explored by surgery - agree that this is a necessary last resort, I would beg out and cancel.
Try every other means of finding out what is giving you such pain before you resort to surgery. I can't begin to imagine what it could be, and it sounds to me as if the doctors have the same dilemma. In general I think exploratory surgery is a bad idea.
I am certainly all for necessary surgery, and would encourage you if that were the case, but in your case I think Rosebud's advice might help you more than the doctor's.
I am so sorry that you are in such pain. I hope you find the cause and resolve your problem successfully. In the meantime, I wish you strength and perseverance.

The very best wishes,

birte

[KTM5665]

awwwhhhh, Mamma:(

have you considered having your surgery done with an epidural at all? they can still sedate you, but you'll be awake, with no feeling from the chest down. It isnt painful to have placed usually, and you dont fear the general anesthesia and whole sleep issues. Ive requested this option several times in the past and have gotten it! You also wake up less sick to your stomach.

I think you probably know in your heart...you cannot live in pain. It's always a wise choice to if you can, find out what's causing the pain, and deal with it if it's fixable. Your too spunky to not have a quality of life. I've never known you to be so sad sounding in the many years Ive read your posts( well...two or so:) ), anyhow...I can hear and see the pain and fear in your written words, mamma.

Please know that your friends are a rooting for ya here in Florida. My kids and I have you in our thoughts and prayers...will be out of town the next few days, but will check up on ya when I get home. Let us light a candle for YOU for a change. Your the mostkind hearted person around these days..no need to worry alone!

[mamafigure]

Birte and Alicia,
I am so glad to hear from both of you. I have been thinking about you and wishing you well.

It was so nice to wake up to your good wishes.

Birte, they have done every test (except the colonoscopy) that can be done and only fibroids and some other things have shown up. Nothing life-threatening. The pain has been bad enough that I can no longer ride in my wheelchair in town, cannot use a cane, so move in a bent-over hold-my-side shuffle. I don't know how much longer I can keep it up. The ibuprofen for pain is worthless, so I rarely take it as my stomach is very touchy right now. My husband sees surgery as the only option, but I am supposed to make the decisions concerning it.

Alicia, I am so glad that you have conquered your fears. I rarely do. I will probably try to get through this, but am not sure how. I know that your trials are much larger than mine. I just wish that this magnifying glass would pass from me.

Lots of love and gratitude,
mama

[ol'cs]

Is your problem a duodenal ulcer or a twist in the small intestines, or a small blockage that they couldn't see by x-ray? Intestinal conditions requiring exploratory surgery won't kill you, if that's what it is. With colonoscopy they can only go so far (up the decsending colon, across the transverse colon, down the asceding colon and only a short distance into the small intestine and the same with the top end, into the stomach and past the main sphincter into the fist few feet of the small intestine) before they have to do exploratory surgery into the small intestine using a smaller scope (we have over 30 feet of small intestine to look at). I just described this here for people who are wondering what you mean by "exploratory surgery" (if I didn't get it right, please tell me).
You shouldn't fret if that is what it is. They can find the problem that is causing the pain and usually normalize it with drugs or surgery which they are ready to do during the exploratory if it's minor.
I sympathize with you and everybody with pain and anxiety, especially with people with abdominal pain because they are hesitant ot give you any pharmacologic relief before exploratory, usually because it slows muscular motilty, which makes it difficult to do exploratory because they need an empty intestine, and the use of the fleet enema to clear the small intestine may be contraindicated. They will probably use the quik acting anestetic that they use for routine bowel colonoscopy (i forget the name of it). When they have done the deed, you'll come to fairly quickly, and they will give you some pain medication. Of course only you know where you hurt and i could be totally off base here, but i have a feeling that once this is over with you will be OK. cs

[mamafigure]

Thanks for your concern. Your ideas make sense. I pm'd you.
mama

[ZucchiniFlower]

Dear Mamafigure, unless your doctors have rock sure reasons for performing surgery, I would, if I were you, avoid it at all costs. Unless you are more than 80% sure that surgery is necessary and that it will be of benefit to you, I think you are better off without such a drastic procedure. Unless several doctors - not surgeons but specialists in whatever you have that they feel must be explored by surgery - agree that this is a necessary last resort, I would beg out and cancel.
Try every other means of finding out what is giving you such pain before you resort to surgery. I can't begin to imagine what it could be, and it sounds to me as if the doctors have the same dilemma. In general I think exploratory surgery is a bad idea.
I am certainly all for necessary surgery, and would encourage you if that were the case, but in your case I think Rosebud's advice might help you more than the doctor's.
I am so sorry that you are in such pain. I hope you find the cause and resolve your problem successfully. In the meantime, I wish you strength and perseverance.

The very best wishes,

birte


That's my view, too, based on what little knowledge I have of your situation. I had chronic pain in my belly and refused exploratory surgery for myself. If I did have endometriosis, they would have put me on a hormone pill that I didn't want to take, so I figured what's the point. After about a year, the pain disappeared.

I would want to know how your treatment would change if they found this or that, and do you even want that treatment.

I would also get a second opinion. I saw a female gynecologist who was already talking hysterectomy before she even examined me. I did not let her examine me!

Trust your instincts. Do NOT always trust your doctor.

[mamafigure]

Thanks, this is my third opiinion, and I respect him. My problem lies with me.

mama

[Jaye]

I'm a mama, too, and a stepmama, and I want to tell you what I have taught my own children.

Growing up means taking ever increasing responsibility for your own decisions. This means not only that you get to choose for yourself, but also that you have to bear the consequences of your choices.

No one ever makes a decision with all the information available that they need to make the decision. There are always unknowns and, therefore, risks.

You can choose how you feel. Anxiety is physiologically the same thing as excitement, and, apart from some illness such as a brain disorder or chemical imbalance, you can adopt a useful attitude, a self-defeating one, or something in-between. (If you are unable to adopt a positive attitude without just putting on an act, maybe it's time to discuss the possibility of depression with your doc. Or not. Something to think about.)

If you keep doing the same thing in the same way, don't expect the outcome to be any different than it was before.

We can only change or control ourselves, not other people and not Mother Nature. Depending on others involves risks, and only we ourselves can decide which ones to take.

If we maked our decisions carefully and responsibly, with all the information we can find and all the honesty we are capable of, then when the future moment of terror comes we will be wise to trust the decisions of the self who made them with a clear mind and a cool head.
As a mother, what do you want to teach or model for YOUR children?

I hope there is something here which is of use to you or someone reading.

Best wishes,
Jaye

[mamafigure]

Jaye,
What you say is true, but that does not really help in the place that I am. I kept everything in and that wasn't working, and so started to share some of my concerns, hoping that it would help. It does, some.

Some decisions, after they are made give a sense of release and commitment. This decision does not.

I know that I am acting childlike, and I know that the problem lies within me, but that does not make it any easier. I have had some depression over the years, have tried a couple of meds, but they made matters worse, so I normally can handle things. There are two things I can't get my thoughts around...surgery/dr stuff and the anniversary of my son's death which is coming up next month. These two have lives of their own.

I very much appreciate you sharing your wisdom, and I appreciate your concern. You are right, I am in this alone.

mama

[Jaye]

mama,

I'm think we're seeing this from different angles. By setting my reply in the context of my own family I had hoped to remain clear of giving you advice directly. I don't in any way know what you should do. Your name called my own motherhood to mind, and I can see that it looked like I thought I was mothering you. Not my intention at all.

Let's peel off another layer from my words. I experienced very critical mothering as a child and have learned to look to myself, and any mother-spirit or paradigm or model I can use, to nurture myself when I need it. This is merely a revelation of how my mind works and is probably the setting from which I was thinking. It would certainly be off-base for me to be scolding you for anything. While I can't predict if someone else will find my words useful, I'm still sorry to have caused you discomfort.

Another layer: It happens I'm having a total hip replacement on Tuesday.

All the best to you,
Jaye

[BEMM]

to say GOOD LUCK Jaye.
If courage flags a bit, think of England's Queen Mum's hip replacements! She had two of them, and I remember a little vignette of her in a film clip of a church service: There was a lot of standing up and sitting down - and the Queen Mum was up and down and up again as quickly and as easily as the young people aroud her - and that was with two new hips - and she must have been well over thirty years older than you at the time.
Royal hips or real people's hips - the replacements really work.
I paid attention to it because it was quite jealous-making. I can't get up without a major struggle.

Mend well and quickly.

The very best wishes from birte

[mamafigure]

You are fine. I use my parenting as a tool, also. I'm sorry that you have to have surgery and I wish you the best. My grandmother had it a few years ago and breezed through it. I think that she was 90 at the time.

My own mom just had knee replacement today. It looks like it went well.

Don't ever think that you have to apologize to me. I am just in a wierd place right now, so I am sorry that I have burdened everyone with my problems.

Take care - and get well soon!!

kathy

[pegleg]

Hi old gang (as in time - not age)! And hi to you, too, mamafigure :)

We've been talking about this surgery.. And I am shocked that some people have advised you NOT to have the exploratory surgery. If I had the pain as long as you have (and the other symptoms), I would jump on that table in a minute. People die of gangrene or a rupture from something as simple as appendicitis. I advise you not to mess with the "unknown."

And here's a big part of your problem: you said I am sorry that I have burdened everyone with my problems. Will you stop already? You aren't a burden - or these nice people replying would not have taken the time to do so.

I've gotcha on my prayer list and it looks like a few others have, also. You'll do just fine - I know it.

And keep us posted - WE CARE!

Your friend -
Peg

[mamafigure]

Thanks, Peg.

I hope that you are doing better tonight...but you should be in bed.

I was so sick when I got home, that even though Kevin was here, I fixed a quick supper for them and went to bed. I was up in an hour, took the blasted zanax well over an hour ago and I am still wide awake...and hurting, too.

I am gong to make up a list for the dr and anesthesiologist and see if that helps. I will meet with my counsellor tomorrow, but for the life of me, could not accomplish the two goals that she set out for me, i.e. sleep, and a scenario that I could escape into.

How anyone can be so scared of so many medical things is beyone my comprehension.

Thanks for being a true friend, and I hope that you feel better tomorrow,
mama

[ZucchiniFlower]

Mama, can they do Laparoscopic surgery? I hope so. That can be done as day surgery, and you can heal at home.

It sounds like it's imperative for you to find out what's wrong. If that is so, then it's best to trust your surgeon, and take it one step at a time. Try not to anticipate.

That's how I got through 3 hours of biopsies. I told my brother, "I really don't want to be there", but I had faith in the process. It's how I got through breast cancer surgery. As they were clamping something to my legs, and putting on a big face mask, I felt as if I were in the space shuttle, getting ready to take off, and I thought, "I don't think I want to be here", but I had faith in all the doctors in that room. The mood was jovial, and that relaxed me.

All the way through, I concentrated on how lucky I was to have such great medical care. I really felt very grateful.

If you think of how lucky you are to have people trying hard to figure you out and help you, it will be easier to be more accepting.

It's important to be a realist in these matters and not succumb to childlike fears. When you're up against the wall, face it. My mother taught me that.

Since you had a third opinion, and your surgeon must be very experienced, since you trust him, then let him do what he does best and help you help yourself.

~Zucchini

[mamafigure]

Zucchini,I am sorry that you have had so many challenges in your lifetime. And you still have your sweet, positive nature about you. I admire that.

I, on the other hand, when to counselling yesterday, took a whole zanax last night and still spent most of the night up and crying. It is stupid and childish, and I know that on one level, but I am too scared to really put things into the what others would call the proper perspective.

I did write out a paper of questions for the dr and anesthesiologist, but am afraid that there is also a section of things that I have to ask for...and I've never been good at asking for things. Things like no IVs after surgery, not being put to sleep without my husband being there (as you can see, sedatives do not work), and leaving the same day. I'm sure that any decent dr would get up and run if he saw me coming.

Anyway, thanks so much for your kindness and the thoughtfulness that you and others have expressed to me.

This is supposed to be laproscopic, so what's my problem?

mama