Re: new friend

From: Rainchild (
Tue Feb 4 16:12:53 2003

Hi Jenny,

Yes, it would be nice to live near each other...I could share my doctors with you. I would love to have someone that I knew in this city that can share adhesions with me. No, don't get me wrong, I don't want anyone to have them, but since you already would be nice. Houston is a long ways away. I'm in Boise, Idaho. I moved here about almost 9 years ago from Calif. I love it here, but I still miss home. I will e-mail your personal address and we can talk. You are a wonderful person and don't you ever let any doctor tell you otherwise. I'll have to share my personal experiences with you with the doctors that I had before. It wasn't always this easy. I have been denied medical attention many times. And yes, I have felt like I was a burden to my other doctors. And when the receptionist heard my name, would sigh like it was a hardship for them to leave the doctor a note to call me. I had to go thru them and just recently tried to get my medical records from this one particular doctor and his staff said I couldn't have them any more. I got out my notes that our sweet Helen had sent us about our rights as patients and guess what? I got my records transfered without another word from them. Knowing our personal rights gives us POWER that most doctors are sure we don't know about. I thank our Helen for giving us this power to help ourselves and others. I could tell you countless stories about how I was wronged with my past docs but I have found good ones now. Now, we need to find you some to help you. I'm hoping that it won't take you very long to find a really good doc that cares and is willing to help you. You are loved here and cared for here. And yes, you have a great big hug for yourself from me. Keep searching, Jenny. You will find one that does know about adhesions, and if he doesn't but is a good doc, he will be willing to learn about them and referr you if necessary, to a doc who does. Good luck and e-mail me any time. You can use my personal addy if you want. Love and hugs and painfree moments....Tonya

>----- Original Message -----
From: Jenny <> To: Multiple recipients of list ADHESIONS <> Sent: Tuesday, February 04, 2003 12:20 PM Subject: new friend

> Hey Tonya,
> I have to say that I could almost feel a big hug in your "book"! :0) It
> really did brighten my day. Wouldn't it be nice if we all lived close
> so we could help each other out?! Where are you anyway? I need your
> doctors! I am surely going to work at educating the doctor I have. With
> all the mess I have been through, my gyn who I have had for 12 1/2 years
> is quitting his practice. It was kind of nice because he had adhesions
> from a surgery he had to repair a bleeding ulcer and also a gall bladder
> surgery. He knew that they caused pain. He had really been a wonderful
> doctor for almost all the 12 years. I don't know what happened over the
> last couple of years, but he changed. He would be real friendly to your
> face, but if you called about something, he was not the nicest person.
> He was different. In August when I had to go to the ER, I was in his
> care. He had ordered a CT and the upper GI with small bowel follow
> through (I think that is what it is called.). I had gotten the CT scan
> back and read that I had a cyst on the ovary and a kidney stone. I
> thought that was funny because I didn't have any ovaries! His nurse said
> he wasn't real concerned with that reading, but more concerned with the
> bowel series. I woke up a couple of days after that bowel series and
> could hardly stand up. I called his office and all his nurse would tell
> me was that it was not a gynelogical problem and I needed to call my
> pain management doctor or go see my PCP. And everytime I told her that
> it was something different, not adhesion related, she would say the same
> thing. So when I go to the ER what do I find out? That my ovary had
> grown back and there was a cyst on it! Gee, what's that? A gynelogical
> problem! Even after 2 CT's and an ultrasound he wanted to deny that I
> had grown back an ovary. It has been confirmed though through 2 more
> ultrasounds. And like I said, we got a letter a week and a half ago
> telling us he was quitting his practice. I don't know if he just got to
> the point that he didn't enjoy his work anymore or if the malpractice
> insurance was just too much. When he first started out, he was
> wonderful. He cried when my youngest daughter was born. That is the
> only one he delivered.
> You and I do sound alot alike. Yes my days have been going from my bed
> to my couch and back. I do homeschool my kids, so I go and sit at the
> table to do that for a couple of hours. Sometimes that kills me.
> Sometimes I do some and take a break then come back to it. The older
> kids work pretty much on their own. Sometimes they need extra help, but
> that is no big deal. But the younger ones are hands on. I have to be
> right there with them. I have come to rely so much on my daughters. I
> got married young (19), got pregnant 3 months later. So my oldest
> daughter is 16 as of Jan. 26. I can't believe it! Anyway, it's my
> second oldest (14 1/4) who is really helpful. She cooks dinner and is
> the one who initiates the others cleaning. I do cook when I can.
> Luckily though Brit likes to cook. So even when I do cook, she is right
> in there to help me. She surely will make someone happy one day. I
> know what you mean though, thank God for TV. If we didn't have cable,
> I'd go nuts, especially at night. I very rarely can sleep. I took a
> nap yesterday but have been up since then. I am really hoping I can get
> some sleep soon. I have been trying to get laundry done last night and
> today. That is a never ending chore around here. Maybe we can email
> each other personally, if you want. I will put my email at the bottom
> so if you want to talk that way, we can. Well, I just cannot sit at
> this computer anymore. Do you ever have pain in your butt like around
> where your tailbone is? I know it is adhesions. Everytime I have had
> pain there in the past and I had surgery, they have found adhesions
> wrapped around the rectum or lower colon, or the rectum is being pulled
> or bent over by the adhesions. It is just when they hurt like this, I
> can hardly get up. It takes a few minutes. Anyway, I really need to
> go. I sure did like your book though and wanted to thank you so much
> for it. I wish I could reach my arms right through this computer and
> give you a great big hug! Thank you for being a friend!
> Bunches of love and lots of hugs!
> Jenny :0) in Houston
> At Tue, 4 Feb 2003, Rainchild wrote:
> >
> >Hi Jenny,
> >
> >I do know exactly what you are talking about. My life is changing so
> >rapidly that I can measure it by the weeks. I had my last surgery in Aug
> >2002, and from there on I can tell you week by week how the adhesions
have > >grown. I used to be able to work out regularly and live a very full
life. > >But little by little I am unable to do much at all. I find myself laying
in > >bed more and more. Thank God for TV! I am in pain management now and I
> >have tried to work out with the pain meds in me, this only aggrivates my
> >adhesions to the point that I end up in bed for a couple of days. I am
> >unable to go shopping for groceries any more. The last couple of times
that > >I went, I ended up hurting so bad that even my breakthru meds didn't
work. > >I know the vicious cycle that you are in. On a good day, I might be able
to > >do some laundry and the dishes, but by the end of the afternoon, I'm in
such > >agony that I'm useless and end up laying in bed the whole next day. All
> >this started happening right after my last laporoscopy in Aug. At first
I > >thought that it was just healing and taking longer, but then after it had
> >healed and the pain was getting worse, I realized that the adhesions had
> >gotten so much worse. I now have them on my liver (well, I knew that
they > >were there for some time) and now a new place, on my right kidney. When
I > >have to go pee, I can feel pulling and tearing on my right side. At
first I > >thought that it was my liver or something, but after tests and cat-scans,
my > >liver appeared to be fine. So I went to a doctor for the kidney and that
> >was fine also, except you cannot see adhesions. But they said no stones,
or > >blood or infection. That leaves one thing and that is adheions. I've
never > >had them there before and it hurts like hell every time I pee. My gyno
> >thinks that the adhesions have wrapped from my intestines around to my
> >urethra (sp) and onto my kidney. This doctor actually has given me his
> >blessing to go to a pain management doctor. I got a new surgeon and he
> >won't do another surgery on me but is in agreement that I should be in
pain > >management. I've never had a doctor believe in me the way that these two
> >do. They talk often to each other and share thier knowledge and share my
> >records with each other. And my pain doctor is in on it to. He also is
in > >agreement with my surgeon and gyno. I finally have a team of docs trying
to > >help me. It's very hard living with adhesions, but I know that in the
end, > >if I can just get to Germany I will be okay. I am actively trying to get
> >the money now to go with my fiance. We are very encouraged by the number
of > >people who have already gone and are painfree for the most part. This is
> >our hope! Jenny, when I started coming to this site in November 2002, I
> >didn't even know that others were out there just like me. I had one
really > >close girlfriend and even she gets tired of me talking about my pain.
She > >wants to go shopping or out dancing and I can't. Now she comes to visit
me > >and expects to sit on the couch or on my bed. You have a new friend
> >here....ME! I know that I speak for all of are welcome and
loved > >here and you have all of us as friends. It's hard to live with this, but
> >having my extended family helps so much. I've learned more about
adhesions > >than some of my docs used to know. I've shared this info with them and
they > >are actually coming to this site to see what I'm talking about and then
we > >discuss it together. That's wonderful!!! More doctors need to be like
> >this. But any ways, I'm writing a book to be the meds
> >....LOL....I get so talkative on them LOL. My fiance is very caring
also > >and he takes me out once a week also for our weekly DATE. It does
brighten > >up my weeks....most of them are very lonely while he's at work, but we
are > >very fortunate to have this support at home. Not everyone does. It's
sad > >but true. Take care and I hope that I haven't bored anyone to tears. I
> >really just wanted to talk to someone today and you and I are similar, so
> >there it is! Hope you are having a painfree would be
asking > >too much for a painfree day!!! :-)
> >
> >Take care and God bless you,
> >A new friend,
> >Tonya
> >

>> >>----- Original Message -----
> >From: Jenny <>
> >To: Multiple recipients of list ADHESIONS
<> > >Sent: Tuesday, February 04, 2003 5:30 AM
> >Subject: My Posts
> >
> >> Hello Everyone,
> >>
> >> I hope you are all having pain free days. I just wanted to say I'm
> >> sorry if my posts are more like a book. I have not posted on here
> >> regularly in almost 2 years. That is when I decided to start school to
> >> get my mind off my pain. But since my pain has gotten so bad I can't
> >> sit through class any more, here I am again. I haven't felt much like
> >> going any where because I hurt so much. I move from my bed to my
couch. > >> Anyone else out there like this? My honey is wonderful and tries to get
> >> me out of the house at least once a week for dinner and a movie, or
> >> something. This helps me to not get too depressed and lifts my
spirits. > >> I don't know if anyone else is like this or not, but I have gotten to
> >> where I don't hardly call any of my friends anymore. I hate when they
> >> ask me how I feel and I have to say bad, or if I say I'm okay, they
know > >> I am not really. I just don't want to sound like a whiner or
complainer > >> to them, so I just don't call. Basically, pain is a major factor in my
> >> life. I hate even thinking that. Even going through pain management,
I > >> am limited on what I can do even though I try. And when I do push
> >> myself to do more than I know I can, then I pay for it in a very bad
> >> way. So I will try not to complain too much, although I feel like I
> >> already have. Sorry! I hope to make some friends here. Hopefully I
can > >> be an encouragement and support to you and brighten your day as you do
> >> mine. Anyway, I know my posts have been long, so I will make this one
> >> shorter. Hope you have a great day!
> >>
> >> Lots of love,
> >> jenny
> >>

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