Re: Hi

From: Kelly Murray (klmurray_61@msn.com)
Wed Jan 28 14:34:56 2009


Thanx for the info. I will try the tan tape. I itch also and have marks on places where the skin has broken from me scratching in my sleep. I am on Ambien also. I still wake up but when I do get a good night sleep, I feel a lot better. Your other suggestions are very good. I would suggest everyone to go to that site you mentioned.Kelly

>
> Date: Wed, 28 Jan 2009 13:12:17 -0600F
> From: backupzeus@ymail.com
> Subject: Re: Hi

I had to switch tape also because it would itch, I would scratch, lose patch..I am now using the gentle tape, it is tan. I have more success with that but it itched last time. I have percoset for breakthrough and usually if I have to get in the car (sit) I will take one before hand. This way the pain isn't getiting out of control making it harder to get it under control.Recently I went to my PCP and he asked if I was dreaming? I was only sleeping about 4 - 5 hours a night also. He put me on Ambian and that helps. I sleep at night and I am in less pain during the day. At first I thought "I am already taking all these other things that cause drowsiness why throw in something else?" But this way my brain gets a rest from the pain for 8 hours and it really does help. He explained about lack of sleep not letting the body/brain reset itself, etc. Redirectional theropy (thinking about something else) is good. Repeated thoughts and emotions create nerve pathways in the brain. Chronic pain impulses travel along well-worn pathways. By using techniques such as guided imagery to build new nerve pathways, “the pain pathways can become less active,” Rossman says. My doctor to me about this article if anyone is interested http://www.aarpmagazine.org/health/drug_free_remedies_chronic_pain.htmlSo I guess having my daughter with special needs gives me something else to concentrate on. Along with my crafts and books. I think about how to teach her social skills, or getting to the OT, or what I need to remind her to do instead of pain. My animals help too...

>
> From: Kelly Murray <klmurray_61@msn.com>
> Date: Wednesday, January 28, 2009 2:04
I will try it on my leg. I use them on my belly and upper "cheek." The tape seems to give me a rash and the liquid itches. I think I do have Aveva. I take 50 mgh every 72 with hydromorphone for breakthrough but Ihave breakthrough all the time so I don't bother taking them. The anti-depressants are good for pain and sleep some times. My hardest time is at night. I get about 4 hours of sleep and then the little one comes over at 6 am and is all ready to "play." I try to get her to sleep for awhile and some times she does. I thank God gave me my granddaughter because if I didn't have her I would focus on the ARD 24/7. I admire you for being able to take care of all of your children. My heating pad is my best friend. Kelly

>----- Original Message -----
From: Heather Hetrick To: Multiple recipients of list ADHESIONS Sent: Tuesday, January 27, 2009 11:38 PM Subject: Re: Hi

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 stayI 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 fro m 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!

From: Kelly Murray <klmurray_61@msn.com>To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>Sent: Wednesday, January 28, 2009 12:55:31 AMSubject: 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>Sent: Tuesday, January 27, 2009 7:21:38 PMSubject: 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>To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>Sent: Tuesday, January 27, 2009 6:37:04 PMSubject: 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>To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>Sent: Tuesday, January 27, 2009 5:47:46 PMSubject: 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.


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