>----- 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 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!
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 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>
Sent: Tuesday, 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>
To: Multiple recipients of list ADHESIONS <adhesions@mail.obgyn.net>
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>
To: Multiple recipients of list ADHESIONS <adhesions@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>
To: Multiple recipients of list ADHESIONS <adhesions@mail.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 talkto me
I am not the only one on here that has suggested some form ofexercise.
Noone said anyone had to do what one said on here it was justa suggestion.
Get over yourself! I am not like you, I have not let thediease take over my
life.DeLayneAt 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
sincerelyCarolineDate: Mon, 26 Jan 2009 21:13:17 -0600From:
comeawake@hotmail.comTo: adhesions@mail.obgyn.netSubject: RE: Hiplease
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: HiGet 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.DeLayneFrom: Linda
<lindahalford@comcast.net>To: Multiple recipients of list ADHESIONS
<adhesions@mail.obgyn.net>Sent: Monday, January 26, 2009 8:39:25 PMSubject:
Re: HiI 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 ADHESIONSSent: Tuesday,
January 27, 2009 6:11 AMSubject: Re: HiJan,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 FinleyTo: Multiple recipients of list ADHESIONSSent: Monday,
January 26, 2009 6:12 PMSubject: Hi
>----- Original Message -----
From: Jan FinleyTo: 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 FinleyTo: 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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