Re: Hi

Tue Jan 27 07:03:02 2009

WOW!!! I am all for trying to help yourself and I know even for myself I have to push to get out of bed because I have not only horrific pelvic adhesions from a hysterectomy I did not need,but Lupus as our terminally ill 5 year old little Girl who depends on me and yet in a strange way I depend on her...she is my heart and my life. Yet,I would never ever think of putting someone else down because of how they feel and what they can accomlish in a day. In my opinion Sabrina nor anyone else should be made to  feel like they want to be removed from this email list and support that 99% of the members offer because of someone who is so uncaring and unkind. Clearly,someone who is so "Harsh" does need any support themselves and should be the one to "Step Back" and let those of us that do need this use it for what it is and an understanding person on the other end of our emails. Again,I am just really taken back that someone can be so uncaring.   Ashley

--- On Tue, 1/27/09, Karynn <> wrote:

From: Karynn <> Subject: Re: Hi To: "Multiple recipients of list ADHESIONS" <> Date: Tuesday, January 27, 2009, 7:59 AM

DeLayne, Really!? You're going to be harsh to people who aren't as fortunate as you?  really?!  We are ALL suffering with this double cursed condition...some of us for QUITE a bit longer than 25 years.  If it isn't ruling YOUR life...fantastic!  That's a great achievement!  Consider yourself lucky, or blessed as anyone can be who suffers from ARD and pause a moment for those that are not so fortunate.  No-one, absolutely NO-ONE wants to be unable to do the little things in life that bring them joy and NO-ONE absolutely NO-ONE comes to this board in the hope that they will be made to feel like saps, losers or to in any way be made to feel less for expressing their feelings and frustrations with this disease.  Berating people who are worse off than you on a forum designed to help lift spirits is just unkind.  My heart goes out to all of us,  whether we still have some semblance of a life or are holding it together by a thread.  This should be the place we go to scream, rant and pray together, it's a place of welcome and hope for everyone.  We learn what we can and take what we can from here and some it works and some of it doesn't and some days NOTHING WORKS.  After 40 years of ARD I have learned that some days it just doesn't pay to get out of bed and other days, you feel like dancing and sometimes you dance when you don't even feel like living... and sometimes you don't.  But the last thing you ever do is berate someone else who is hurting.  This isn't about pats on the back for coping.  It's just about coping. Bless you all and please, please be kind.  It doesn't hurt to be thankful but it hurts to berate.  Until you feel another person's pain, you can't know.  We have had to deal with enough of that from doctors, friends and family doesn't belong here.  and you know that, in your heart, you know that. Karynn wrote: Well Caroline when you have lived with adhesions for 25 years come talk to me. I am not the only one on here that has suggested some form of exercise. Noone said anyone had to do what one said on here it was just a suggestion. Get over yourself! I am not like you, I have not let the diease take over my life.


At Tue, 27 Jan 2009, Caroline Bittleston wrote:

I'm with you Sabrina. I'd love to be able to go for a walk with my partner.....or with my kids......or yes, indeed - even just go shopping for groceries without having to ride my mobility scooter. For the last 3 years I have been unable to spend more than a few minutes on my feet at a time, and even then I have to be very careful, and I move very slowly. I use a mobility scooter when I am out of the house - and just recently the doctor prescribed a tripon can that I'm supposed to use around the house. My adhesions have cause such extensive damage to the nerves that I am now prone to falling, so I have to be very careful. I live in constant pain, despite pain meds - I do NOT "lie around" all day. I spend my days doing my best to manage the home. Three years ago I was a professional business woman. I travelled regurlarly on business, I was asked to speak at national conferences, I was respected in the industry. Then all this happened......and now I consider it a good day if I can manage to do 2 loads of laundry. I've done PT, I've done the special programs, seen special doctors etc etc. And yes, I even own a Wii! I can't play the thing - but my kids enjoy it. Please be careful what you advise people to do on this list - remember, not everyone is the same. sincerely Caroline

Date: Mon, 26 Jan 2009 21:13:17 -0600From: comeawake@hotmail.comTo: adhesions@mail.obgyn.netSubject: RE: Hi

please remove me from your email list. Get a wii? My hysterectomy and C-section caused me to NOT be able to do activities anymore. I wish I could, then I would get a wii, or wait maybe I would skip the wii and just go for a walk with my husband or teach my child how to ride a bike or go shopping for my own groceries....get a wii....sigh:(

Date: Mon, 26 Jan 2009 21:02:44 -0600From: j-dreichman@sbcglobal.netTo: adhesions@mail.obgyn.netSubject: Re: Hi

Get a Wii!! Play at your own pace. Don't know if you know, but they are putting them in nursing homes to help the elderly and it is working they say..


From: Linda <>To: Multiple recipients of list ADHESIONS <>Sent: Monday, January 26, 2009 8:39:25 PMSubject: Re: Hi

I really need to hear this because I've been lying around depressed, not exercising or doing anything much. I'm going to take your advice and get out of bed starting tomorrow!

>----- Original Message -----
From: Kelly Murray To: Multiple recipients of list ADHESIONS Sent: Tuesday, January 27, 2009 6:11 AM Subject: Re: Hi

Jan, You are correct about physical activity. I started Jazzercise a year ago and it has helped me. Of course there are days that I can't go but I try to go at least 2 to 3 times a week. The strong colon cleanses may not be for everyone. When I have used them, my stomached was very very sore from the adhesions pulling but a mild one seems to do okay. After being on this site for a few years, it seems that the people that stay in bed have the worst pain and depression. You have to try and live a semi-normal life the best you can.

>----- Original Message -----
From: Jan Finley To: Multiple recipients of list ADHESIONS Sent: Monday, January 26, 2009 6:12 PM Subject: Hi

>----- Original Message -----
From: Jan Finley To: Sent: Monday, January 26, 2009 8:03 PM Subject: Fw: colon cleanses, etc.

The below came back to me as spam and I am trying to resend it.


>----- Original Message -----
From: Jan Finley To: Sent: Monday, January 26, 2009 12:33 AM Subject: colon cleanses, etc.

You can do your own colon cleanse with hardly any expense. The one I use involves Epsom salts, olive oil and lemon juice all in various degrees depending upon your particular profile. There are premixed ones found in health food stores, but I would not dare recommend what might be best for you. There are many websites that you might research...Just type "colon cleanse" into your search engine and Voila! - You will be able to sort out the genuine from the wackos, I hope.

The first time I used the "natural one" based on an alternative med suggestion, I thought it was going to about kill me before the benefits of it were over, and I have never used that strong a dosage since. But, WOW, it worked! If you go for that, be prepared NOT to go out of your house for a while, from 4 to 12 hours.

As for as rebounding is concerned, I found it coincidentally when I was looking as an alternative to road running on days it was too cold to go outside. In spite of my condition, I firmly believe in staying active. Rebounding has many benefits, not the least of which keeps things moving in the intestinal track, as well as loosening the areas where the adhesions are most painful. Another method I use to get relief is to use one of those large exercise balls and, lying backwards, extend the torso as far as possible, thus stretching the entire abdominal area. It is not for the "faint of heart", but both methods really work if you stick with it - and can stand the initial discomfort. Eventually, you find that your condition has improved, though never gone - It can hit you sometimes when you feel as if you've done EVERYTHING right- but you just pick yourself up, dust off and keep trying.

One other thing that you, or someone else, mentioned....You can get a Homedics (or other brand) self-massager and use it in the area where you are having the most obstruction. Once again, this is not a cure (I doubt there will be anytime soon, as it is not cost-effective condition for physicians to treat), but it can provide some relief.

Over a 25-year period, during which most physicians would not even acknowledge that a condition such as ours existed, I have had to improvise my own methods of relief. Staying physically active has worked best for me, but I know that is not the answer for everyone.

After posting my last message re: "Oprah", I got to thinking that there are few celebs, including Oprah, who would take up our cause, because it has no "glamour", and the embarrassing side effects we all have would make it difficult for a lot of us to "go public", as it were. I'll still give my "two cents" to bring awareness, but I am skeptical to say the least, because most people who take on causes want a "happy ending"......

In any case, I encourage you -and everyone- to be, continue to be active, not just in bringing attention to our plight, but staying as physically active beyond what you think you can stand. - Don't want to go all "Zen" on you, but go into your pain, become a partner, rather than resist - It will serve you well when it strikes unexpectedly. And stay healthy in your other "parts".

Be glad to have your family and friends, and take comfort in their being. Be glad for the adhesions website, and know there is always comfort here - and often good advice.

You take care, too.


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