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 us.....you 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 now.....got 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 moment.....it would be asking
>too much for a painfree day!!! :-)
>
>Take care and God bless you,
>A new friend,
>Tonya
>
>>>----- Original Message -----
>From: Jenny <jenklow@hotmail.com>
>To: Multiple recipients of list ADHESIONS <adhesions@mail.medispecialty.com>
>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
>>