Part 6: Bev is pain-free following her April 22, 1999 adhesiolysis...

From: Helen Dynda (olddad66@runestone.net)
Thu Mar 1 19:06:42 2001


[ NOTE: All of the following information was posted by Bev after her April 22, 1999 adhesiolysis.]

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Part 6: Bev is pain-free following her April 22, 1999 adhesiolysis...

I do believe that the more educated one becomes to their own disorder, the better equiped they will be to discuss treatment with a doctor -- even down to what needs to be done in a surgery, if you elect that route! I also feel that adhesional lysis, performed in a certain way, CAN reduce the amount of reformed adhesions; and, in all probability, decrease the formation of de novo ( new ) adhesions.

I firmly believe that there are NO adhesion barriers available today that will be effective in dealing with adhesions -- and I mean NONE!

Once you learn what type of procedure is best for an adhesional lysis, you can discuss it with your surgeon -- even dictate how and what you wish to have done for you and this disorder!

Always remember these words..."YOU ARE NOT ALONE!"

I stated the other day that if anyone thought that adhesion disorder can't kill...ask Dr. Wiseman who the second victim of Dr. Kavorkian ( Dr. Death ) was...well I'll tell you...it was a 56 year old woman who suffered chronic pelvic pain! Our disorder, ARD...OURS!!!

I suffered and still suffer from this disorder, surgery or not...I am addicted to pain meds and am withdrawing from them at this time. I am scared to death every time I eat as I think I'll get constipated and will suffer such horrible pain...BEFORE, DURING and AFTER I defecate...yes, have a bowel movement. I live with the fear that I'll start to pee my pants again as I did for 10 years...and I am ONLY 48 years old now...so that put me at 38 years old living liked that!

Every little pain I get in my abdomen fills me with fear that the adhesions are back...but then I talk to myself and run through what I have learned about OUR disoder and I settle myself down and I am better... better for awhile.

Because I have educated MYSELF about adhesion disorder, I will make it through this part of it as well; but I will always live with that fear of them reforming...it is ever present in the back of my mind and I find myself feeling anxious at times to live every minute that I have now...and I will! I share only from experience and what I have learned living with this... I don't know anything any better than the rest of you -- maybe just from a different perspective, thats all.

I need to hear your perspectives also. No, not for personal gains, not for any study, not really for any other reason than the fact that you have what I have; and I am so grateful for the sharing as that to me IS educating myself yet on all this new stuff. Thank-you Helen, Anne, Chris, Michele, everyone who has the courage to reach out to touch the lives of fellow sufferers like me...and let's build this thing...and let's pray for strength and progress...as folks....

I WAS dying as I lay on my couch not being able to eat, I vomited all the time...had become intolerant to ALL my medications last September ... couldn't have a regular BM without laxatives, and I couldn't sit for over 10 minutes without excruciating pain...went outside only 2 times in April 1999 ... that was to make the trip to New York City for surgery...2 times. I went from my bed to my couch ... took pills, waited, oh god how I waited for 7pm so that I could take my heavy dose of sleep and pain pills and go to bed again!

I remember looking outside and my husband asking if I wanted to try to take a walk...I was too weak and he knew that; but I said no as it looked like it was going to rain, it looked cloudy and not real inviting to me. You know what, friends. My husband said the sun WAS shining and there wasn't a cloud in the sky! But, by the grace of GOD, it looked uninviting to ME...and I didn't have to suffer the reality that I was just too ill to even take a walk outside.

What a good GOD I have...didn't want to tempt me, I guess...but I really think he didn't want to hurt me even more! Social life...nope, not interested...couldn't eat or sit anyway...hadn't sat at my own kitchen table in two years. If and when I ate, it was reclining on the couch!

I loved my husband and 3 children so much...but I was ready to go as I was just so tired...so tired -- not unhappy, not unloved -- just ready to sleep forever and not lay and watch life go by, even that didn't matter anymore...I was just so tired! The thought of dying wasn't scary...wasn't depressing. It wasn't really anything as I was just too tired to want tokeep laying around vomiting and in pain so that everyone else was at peace knowing that I was still around or something...I WAS DYING!

What IS life if it isn't living? What is the highest quality of life for me? To just be able to get up in the morning and move about...no vomiting, not a lot of pills, to be able to eat. I pretty much still live on egg custard and yogurt, some scrambled eggs. NO CHEESE as cheese is so constipating that I will forever be afraid of it...and I live in the dairy state of WISCONSIN -- so I won't be doing any commercials, I suppose!

I mentioned to my husband the other day how bright the sun was shining as we were preparing to take a drive...with ME sitting up in the FRONT seat, not laying in the back with pillows...WOW...now that IS life!!! I notice all the little things now...but to me they are the big things. I went and shopped for groceries last week...alone!

Two weeks ago my husband said he was getting tired and was going up to bed. I said, "Ok, honey, I'll be up in a bit when I finish puttsing here." He stopped and looked at me...it was 10pm!! He was looking at the clock, so I did too...we both started to laugh. HE was going to bed and I was staying up! Then we just hugged and I started to cry...I mean REALLY cry ... you see I WAS STAYING UP!!! That's all...just something so simple; but to me it meant LIFE....

I can't continue sharing right now. I'm sorry, but all this reflection causes me to have to deal with this and I can't...I just want to enjoy the time I've been given. Please offer support, education, your stories ... anything that will reach out and give hope and a chance for life for all adhesion sufferers...all who suffer pain for whatever reason... for GOD sakes...if for no other reason...for yourselves!

GOD BLESS EACH OF YOU!

Bev ( bnb@cybrzn.com )


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