As a mother of small children, I cannot imagine what you have been through. Your story is an inspiration on one hand and very sad on the other. An inspiration because you worked so hard to help your daughter and you found the help she needed. Sad because, for all our country has to offer, women are still treated as though they are hysterical beings.
I don't believe you are overzealous when telling your daughter's story and the emotional pain you have endured through trying to help her. You sound like a woman who took the bull by the horns and did what had to be done. This is admirable!! And while going to Germany isn't an option for all of us, for those that it is an option, we should be celebrating! With the success stories, we have more fuel to add to our fire here in our country to get the medical community to understand and start working to help those suffering!
For me, I have appreciated how you understand that being told IBS is more of a slap in the face than help. It's not that I doubt anyone who suffers from this disorder, I just don't feel you go under for surgery WITHOUT IBS and wake up with it. I don't know or understand why doctors who have much more education than I can believe that to be true either.
Thank you Karen for your wit, your understanding and your support. It means a lot for those of us that don't even have a regular doctor and never get to see the same doctor twice. It often seems no one understands, but coming here and knowing that you and others here do is a blessing!
At Sun, 29 Jun 2003, Karen Steward wrote:
>
>Hi Elaine,
>
> I am so sorry you are in pain......I know how you feel about
>being ignored in the US, as the majority of doctors just will
>not acknowledge the pain. Many will lump all your symptoms
>into the "IBS" bin, many think you are a mere "woman" and thus, there
>is your problem. It is a sad place that the ARD sufferer finds
>themselves in.
>
> There is a lot of emotion surrounding surgeons, Germany etc.,
>as this is such an emotional, painful existence. I am one of the
>women that posts about Dr. Kruschinski/Germany (as you know)
>and some appreciate it, others don't..................if I knew somethin
>to offer someone in the US, I would be on here posting about it
>.............unfortunately, I have never found any help in the US..... and
>God
>knows Melissa and I went in and out of doctor's offices day in and day o t,
>month in and month out, year in and year out...............and I came ho e
>and
>buried my head in the pillows and cried so many times as I saw
>my daughter once again go into her bedroom, fall into her bed
>in a darkened room and merely exist...............in pain. A mother
>is suppose to take care of her child, and yet, I had no
>answer for her. When I finally thought I had found her help and she
>had surgeries, she became worse................
>
>I may be overzealous when telling our story...........as I am so very
>thankful we have finally found help. I may not share in the way someone
>else thinks I should, however, it is my hope and prayer that others
>will be able to get the help they need. I am not perfect, and have
>never claimed to be, but I am working in the US to bring awareness
>to ARD......... there are many women working to bring this illness out
>of the darkness and into the light............every effort that each per on
>makes will bring us one step closer to helping people here in the US
>get the help they need. Melissa's story is in our local paper today! I
>am excited that one more story has been published, as this will help
>bring awareness. I encourage women, whether you are well or not,
>contact your paper and ask them to do a story on ARD.......let them
>know you cannot get help in the US...........if you are ignored, find
>another
>reporter and try again. If you are too ill to beat the bushes, contact m
>or someone else that is working on ARD awareness and we can help you
>reach a publisher in your area.
>
>At some point there will be a doctor or two that will acknowledge the
>pain and begin seeking ways to help US patients. I know we need
>SprayGel approved, and that is another demand we are making in
>your behalf......however, we will still need expert surgeons to accompli h
>surgery in a manner that provides the sufferer with the most hope that t ey
>will be free from the nightmare of ARD.
>
>I know none of this does you any good right now, and I hope you can find
>help right now from someone..............please don't ever accept this
>illness
>as your life sentence. Try to stay positive and believe that your day wi l
>surely come when you will receive real help.
>
>Best Wishes,
>
>Karen
>