Re: Hi

From: Heather Hetrick (backupzeus@ymail.com)
Tue Jan 27 23:37:28 2009


Kelly, Yes I am on 75 mgh patches every 72 hours. To get them to stay on I make sure to clean the area well just from the body oils, I stick them at the top of my legs (I found I lost more on my arms or I get a rash on the more sensitive areas of skin) and then put tape on all four sides. It doesn't work every time. I have woken up in a ball of pain with them stuck to my nightgown or the bed. Some of it is the brand also. If your insuance company will only pay for generic I found out in June that there are other companies that make the patch that are considered generic by insurance standards that stick better. If you are getting the brand in the light blue and white pack (can't remember of course), there is another brand that looks just like the name brand, the brand I picked up yesterday are Aveva and it seems to be sticking pretty good. The pharmacist is the one who helped me out with that. Hope that helps you getting them to stay

I have a 16 year old girl, 13 year old boy, and 11 year old girl. The 11 year old has high functioning autism. Her TSS is wonderful and helps out alot. My 16 year old and 13 are a great help most of the time. I have to keep my body as straight as I can but I still am as active as I can be. I do some housework for about an hour, then have to lay down for an hour and alternate. This way I don't overdo and still get everything done. Now the only doctor that will touch me is about 1 hour away and I can sit for about 30...So a trip like that hurts for a while afterward and I spend quality time with my heating pad...But I take my kids everywhere they need to go, most days. When the weather is nice we go for walks as long as I can leave sight of a bathroom. I go slower and they aren't hikes anymore but we are hardly every home so that way if I do have to stay home the kids aren't so sick of being here. I do some work online so I can lay straight and still get a bit of money. I went from taking care of 1 plus acres of ground to not being able to push a grocery cart...Yeah it is depressing. I worked in a warehouse and still came home and did everything so I can't slow down entirely without going crazy.

It is funny you mention hating putting your kids through this...I just mentioned that to the councilor today. I go every week for coping skills with the ARD and having a child with special needs. My oldest doesn't want to go to college because she doesn't want us to be on our own while I just told her gifted teacher today that I WANT her to go and get out of the house. I don't want my illness to hold them back from living up to their potential. It is bad enough if something happens to me their little sister is going to need some guidance because I don't know if she will ever get everything she needs to be an independent adult. We have my foster daughters kids over, ages 2 and 3, but everyone takes turns playing or watching so it isn't all on me. I want the kids to be kids unfortunately there are some days I need them to make supper or keep an eye on their little sister. My youngest needs alot of reminders, appointments, and modifications but the TSS and teachers help as much as they can in making her more independent to help her and me.

I do agree that you have to keep as busy as you can. This helps give you some feeling of worth since there are limitations that weren't there before. I was on an anti-depressant but it made me feel worse and the councilor says I am doing good without it. It wasn't for depression but it was to help with the pain. Another sufferer in the area that I get together with sleeps all day and is so depressed and miserable.. I kept telling her to start with a short list of accomplishments to get through the day, it will help the pain and the depression. She is pointed in the right direction and doing a bit better.

Hope the patch information helps! Hoping you a pain free day!

________________________________=0AFrom: Kelly Murray <klmurray_61@msn.com>=0ATo: Multiple recipients = ion helps! Hoping you a pain free day!

___________________________of list ADHESIONS <adhesions@mail.obgyn.net> Sent: Wednesday, January 28, 2009 12:55:31 AM Subject: Re: Hi

Heather, Are you on the Fentynal patches? How do you get them to stay on? I change mine every 72 hours and I have used liquid bandaid and waterproof first aid tape and I always get water in the patch when I shower. Forget about taking a bath, it really seeps in. How do you take care of your child with autism if you have to rest a lot? Do you have any help? I don't know what your pain level and sickness are but I know for a fact that if I don't get up and try to do most normal things, I am worse. I am not saying you lay in bed all day but have you tried moving around a lot? Of course when I don't have my very active 3 year old granddaughter, I rest and I seem to feel almost worse if I rest on the days she doesn't come over. Now I have bad veins in my legs and will have surgery this Friday. I am hoping it will be a snap so I can watch my granddaughter. The other thing is that when my three children lived at home, I was in bed a lot and now I just hate that my kids had to go through that. I was always so active before I had this and it drug me down but now I am not going to let it take me down because it does affect your family and kids and I want to live before I die. Have you tried any other meds like anti-depressants? I know it is a drag to take a lot of medication. I am on about five different ones and I think that does help a little. ----- Original Message ----- From: Heather Hetrick To: Multiple recipients of list ADHESIONS Sent: Tuesday, January 27, 2009 6:01 PM Subject: Re: Hi

I am sorry that you took it like that. My purpose was trying to calm others by providing the reason behind the delay. No I don't want to continue to be laying in bed on Fentynal and Percoset fighting for disability while raising three kids on my own, one with autism. I lost my job and my house of 10 years because of this disease in the last year, never mind the time I loose with my kids every day. I am not saying stop being pro active or spreading the word. I am trying to set up an ARD day at the local walmart myself on Sept 24 this year to hand out flyers and get information out. I got the resolution passed for PA, might as well use it. I spend my time in the bathroom, waking in the middle of the night throwing up, not able to sit more than 15 minutes with my kids to eat dinner, along with the other adjustments that this family has made for me. I am just saying that getting upset and stressed about it isn't helping anyone. You get tense, your muscles tense and your pain level increases. I manage best I can till the FDA passes something and was just hoping to share that there are companies out there trying to get us help. My doctor at Hershey Medical Center is great and I know not everyone has that luxury so I shared what he found out on his own, that's it.

Sorry my words can't provide you the comfort or answers you want and need.

________________________________ From: diana rodriguez <dinilka@yahoo.com> To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>=0ASent: Tuesda= _________________ From: diana rodriguez <dinilka@yahoo.com> To: Multiy, January 27, 2009 7:21:38 PM Subject: Re: Hi

some people sound way too calm about been sick!!!!!!, what we have to wait ,the spraygel was suppeosed to be in the market in 2003. We don't know who is who in this blog. No human being wants to go on and on in pain. We are not wire that way. We are not equipped to go through so much pain. I am very sorry but you don't sound like a person with our condition. You sound like many of my doctors. You are in this blog to stop people from being pro active. We have to pay attention when people sound like you. What is your purpose?. One of the doctor who was part of the trial who is a well known gyn doctor in Texas has a different view. How much you were paid to run that , what is the company that you represent?.

________________________________ From: Heather Hetrick <backupzeus@ymail.com>=0ATo: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>=0A= _________________________ From: Heather Hetrick <backupzeus@ymail.com>Sent: Tuesday, January 27, 2009 6:37:04 PM Subject: Re: Hi

My doctor talked to one of the doctors in TX that did the trial in the states. On the Confluent CD that I saw before my surgery in Germany you are not to spray the organs, just the walls of the abdomen with the SprayGel. A few women got sick/one died with the testing from TX because they sprayed the organs. Confluent is a private company without all the bucks that a company like Johnson and Johnson has to throw into the testing that the FDA needs to pass something. I costs more than 125 million dollars to get something tested and passed by the FDA. Any surgeries done by the surgeon I had in Germany was forwarding his results to the FDA for consideration if you signed the release form. Anything that any company is coming out with to help with adhesions is going to have to pass the FDA so we can have access to it in the states.

I will agree that it is crazy that while it is made here it can't be used here! I complain every time there is a new ED commercial on TV. What good is that when the women are in to much pain to reap the benefits of those wonderful drugs?! Yes get the word out about this disability just so people can go to the doctors and know they are not crazy and force the issue. Advocate for your health! But I don't know if it is going to make the FDA move any faster...They still need at least 3 clinical trials, and review results after each one. We just need to wait.

________________________________ From: Kelly Murray <klmurray_61@msn.com>=0ATo: Multiple recipients of list ADHESIONS <a= o wait.

________________________________ From: Kelly Mudhesions@mail.obgyn.net> Sent: Tuesday, January 27, 2009 5:47:46 PM Subject: Re: Hi

Maybe the Spray Gel isn't all that they say it is so we can't look at these products as if they are the cure-all. Maybe they are our best hope but I say again in my posts' that we can't look at these products as if every one is going to be okay afterwards. They need to do the clinical trials for a few years and see the results before they make it to available. ----- Original Message ----- From: diana rodriguez To: Multiple recipients of list ADHESIONS Sent: Tuesday, January 27, 2009 1:27 PM Subject: Re: Hi

hi,

we should make an effort to contact anybody who can help us to solve this puzzle. Spraygel and Sprayshield is made in Massachusetts and send to 20 countries. After 10 years this company making this product and knowing the need of the People still the product is not approved widely in US. They should have goodddddddddd answers when be questioned. Too many death and lot other partailly disable and other severe disabled. It is not right patients flying to Germany for surgery when the product is made in our backyard.

Probably, somebody have been lobbied again the product or in favor of the present products in the market. thanks God, the lobby thing will not be permitted anymore. Spraygel and Sprayshield is the same product and both from the same company and approved in 20 countries. Something here is very wrong,way too wrong,please let's do something together. The person who mentioned Oprah and Dr. Phil she/he is so right. Let's write together, let's go the radio, try to make this an everyday thing to, our family member can be part of this. they can be very helpful. We should write everyday not just a single a letter. please ask everyone in your family to be part of this cause or be our advocates and will see changes. Some of us we are severe disabled and some of have lost or know a person who have die from or related disorders. you can find info at info@confluentsurgical.com address 101 first avenue Walham, Massachusetts phone1781-693-2300-2331 We need to made this a priority, we need to wrte letter, go to the radio.

________________________________ From: Linda <lindahalford@comcast.net>=0ATo: Multiple recipients of list ADHESIONS <adhesions@m= radio.

________________________________ From: Linda <lindahalail.obgyn.net> Sent: Tuesday, January 27, 2009 1:20:40 PM Subject: Re: Hi

Well said...I agree. Until someone has walked a mile in your shoes, they have no right to judge anyone. I have tried every conceivable kind of medication and combinations but after awhile I became immune. The ones that help best (oxycontin, morphine) keep a person so drugged up they can't function normally. Anyone taking pain meds must also use something every day for their bowels. Even thought it hurts, we must try our best to move as much as we possibly can. I find the product Bed Buddy (moist heat pad) is good for pain. You heat it in a microwave for not more than 2 minutes then place it on the painful area. I'm now trying methadone (lowest dosage) and neurontin, plus lorcet 10/650 twice a day. These meds can affect our liver so it's important to drink lots of fluid and get check-ups on liver function. It's very sad to think there is help for those of us who are suffering with ARD but our government is withholding it. If German doctors are using products that keep adhesions from reforming, our U.S. doctors should also have them available to them. ----- Original Message ----- From: Karynn To: Multiple recipients of list ADHESIONS Sent: Tuesday, January 27, 2009 5:29 PM Subject: Re: Hi 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 members...it doesn't belong here. and you know that, in your heart, you know that. Karynn

j-dreichman@sbcglobal.net 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.

DeLayne

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.net To: 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.

DeLayne

From: Linda <lindahalford@comcast.net>To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>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 th >e best you can.

----- Original Message -----

From: Jan Finley To: Multiple recipients of list ADHESIONS Sent: Monday, January 26, 20 >09 6:12 PM
Subject: Hi

----- Original Message -----

From: Jan Finley To: adhesions@adhesions.org 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.

Jan

----- Original Message -----

From: Jan Finley To: msziggy45@gmail.com 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.

Jan

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