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My DC experience

PostPosted: Oct 06, 2005 12:26 pm
by Ivydragon
Sorry this has taken me a while to get to. I tried to take a few days just to play w/ my kids and reconnect w/ my dh, and this week I'm trying to put our house and schedule back together - what a joke.

DC was an adventure! I'd never been before. I learned not to care what was on my feet - I should have changed to my more comfy shoes way earlier than I did. The map is deceptive - it doesn't look far - it is. Taxi's are expensive, but they are much faster than the metro, which is easy, but time consuming if there isn't a metro stop within 2 short blocks of where you want to be. I really thought DC was spacious - lots of green area - naw, that's just in that middle section. Everything else is massive stone buildings that are incredibly ornate, and right next to one another. I lost all sense of direction, and without fail every time I came out of the metro I went the wrong direction first. The city doesn't sleep. No wonder the President leaves the capital to get a break - it's always noisy. I'd pass men in full business suits and then a woman running w/ her child in a running stroller out for a morning jog, and a tourist with a camera. I felt really pretty safe wherever I went, thankful for a bathroom I could use, even if it was leaky and there wasn't a clean spot to put anything down, and for a chance to eat when I was hungry, and for sleep.

The delegation met for dinner the night before the briefing. So we all had a chance to get to know each other. Everyone is really nice. Dr. Goodwin and his wife are really passionate about helping with HG. He's been interested in doing research about HG for 15 years and was told by a collegue that "there wasn't any money in that". Well, now there very well may be funding - we're hoping so, anyways. It was interesting that his perception was that we were helping women who were already in the pit of HG. He has theorized that proactive treatment would lessen the degree of HG - and that some women are as sick as they are because it wasn't treated agressively early enough, and that it would be hard to prove. Yet we know here what type of a difference it makes, and I've seen the results of proactive planning for a few years now. I knew I had a unique perspective of HG, but I had no idea it was THAT unique. I have a feeling Ann Marie King knows, though. She wrote a beautiful bio about me - I was quite humbled. Dr. Goodwin said he'd like me to be part of the team that helps to compile a set protocol for treating HG. I hope he was sincere. It'd take a lot of information compiling first, anyone want to help?!? Kimber and Ann Marie really did a great job of choosing speakers. Ones that would carry a double understanding in representing HG.

The morning of the briefing was exciting. Congressmen Weldon was late, and we started 1/2 an hour late. Some of us speaking towards the end were concerned that we wouldn't be allowed to speak, but once we got started everyone spoke. It was really emotional. I read stories here all of the time, but it's totally different to hear it first hand. I spoke last, before Dr. Goodwin wrapped up with a few last comments. I'd warned Ann Marie and Kimber that I could hardly get through my speech (when practicing it) without crying. I hardly speak of my own HG experiences, and had never written it all down in one place - the whole of it. I cried during my speech. I was so embarrassed. I was fine quoting everyone else, but not in speaking about my own broken heart. I know I was looking around the room as I spoke, but I didn't really see anyone at all. I have no idea who was there. I know Congressmen Weldon was standing in the back of the room because someone said he had indeed come, but I was oblivious of everyone.

From what I initially saw, I think we had about 10-15 people come who weren't speaking or there to film and photograph our speeches. The room certainly wasn't full. I think we were all disappointed with the lack of attendance. But, the comments afterwards showed our impact. While several from our delegation went up to Congressman Weldon's office, I stayed behind and the camera crew spoke with me. One guy from Britain told me I'd brought a tear to his eye, and then went on to want my contact information so that we could connect us with his Sister-in-law who is an editor at a large medical magazine in the UK, read by Drs. and pharmaceutical companies I think he meant here, too, the readership. He also suggested that a visual story of HG would have more impact - would bring more impetus for funding and change. Suggested that a photographer be sent out to get photos of a woman suffering HG. Another of the crew said that we had spoken so strongly that they had congress would have to do something about this. Later Kimber and Shari Munch (another speaker who spoke on the social cost of HG) were stopped in the hallway by a young man who had attended for a collegue and was really struck by what had been said. He had told his secretary who admitted being related to someone with HG. He said we'd had a really good attendance, and that is was amazing that we'd had two Congressman agree to attend and speak in person. He said that even Erin Brokovich only had 30 people attend her congressional briefing. Ann Marie reported that Dr. Goodwin hadn't known how much loss and despair was a result of HG and was even more set on not quitting this cause until funding was accomplished. We also have a video tape of all of us speaking. That will have far reaching impact for a long time to come. I know that the head photographer had looked up HG after giving Ann Marie a bid and gave us a discount after he reallized what we were all about. I was told that the videos were going to be $14.00 a piece. Are lots of you interested in buying a copy? I can let Ann Marie know. I think it would be cool to have a copy myself.

Anyways, I came home absolutely exhausted. I felt very vulnerable to HG after the briefing. I was happy to come home, feeling like I was slipping back inside a protective shield between me and HG.

I think we made a huge impact. I'm hoping that what we have learned here, in the forums by our own experience and desire to not suffer so greatly, will make a bigger impact than we reallized. There are people connected with HG who are in places of influence and connection who are developing networks to fight for research, funding, and publicity. They are dedicated to this cause, and aren't going to quit until their objectives are achieved. We have a voice.


PostPosted: Oct 06, 2005 2:00 pm
by dwtegli

Next; I would love to help, and I would like to purchase at least two copies of the videotape.

PostPosted: Oct 06, 2005 2:08 pm
by Ivydragon
Wendy, I absolutely LOVE the photo of your child. That would be one of my all time favorites if it was my kid in our family scrapbook!

I'll need help finishing the archiving of HuGS, and then it'll be easier to sort through all of the protocols that have been written over the years. The best part is that now we've had many of these women who've written protocols go through another pg, they can review it and make comments on what seemed to work well, and what didn't from their experiences. It'll take a bit of work, but if there are several of us willing to work on it, I think it could be really valuable information.

Thanks! Andy

PostPosted: Oct 06, 2005 2:26 pm
by dwtegli
Thank you, it is definitely a favorite. He sure liked the frosting. Didn't eat much of the cake though. How typical.

Just let me know how I can be of help.

PostPosted: Oct 06, 2005 2:47 pm
by BrandiJK
Wow, what an experiance. Thank you all, once again, for taking the time to do this.

I would love to help, but am afraid I won't be able to do much at this point. Can I step up to help when no longer in HG?

Just reading your experiance stirred up my emotions. Thank you again. I will def. be purchasing at least one tape, and my mom may want one as well.

PostPosted: Oct 06, 2005 3:32 pm
by Ivydragon
Of course you can volunteer to help when you're up to it. I don't expect that it will be a quick project. There's tons of information to wade through.

Hugs, Andy

PostPosted: Oct 07, 2005 7:59 am
by Marie
To all the ladies who attended,

Thank you for putting a face and voice to HG awareness. For many it is just too difficult to revisit once it is done and behind them. Your strength and courage to relive those emotions for the sake of many is truly heroic.


PS please reserve me a copy.

PostPosted: Oct 07, 2005 8:17 am
by nomore

Im so glad you were able to be in DC to represent us. I too got a teary eyed reading your post on this. I certainly want to help.... but more realisiticaly it will have to be post HG for me.

Thank you yet again for all you do for us. I was so encouraged reading about DC that perhaps someday there will be better treatment for women who suffer. I can only dream it will be better someday.

I too would like to purchase a video tape. I may not watch it until this peanut arrives, as Im sure it would be pretty emotional, and Im not sure Im really up for it right now. Right now its tough reading the posts of the people in the 1st trimester, as their suffering is still so close to me.

Thank you again,


PostPosted: Oct 07, 2005 9:29 am
by jjbeck
Hi Andy. Thanks again for attending. Glad you survived DC.

Yes, I would definatly like to purchase two or three copies of the tape.

PostPosted: Oct 08, 2005 10:45 am
by stephensmam
Thank you for all you do im so very proud to know you, God bless all who went with you to DC and hopefully it has made a difference in peoples perception of Hg i would love to help in any way i can i absouloutly agree that agressive treatment as soon as possible when you have hg makes such a difference, the protocal i had for my pg on sarah is proof that getting ivs asap and steroids do work zofran didnt work for me but i know it does work for others i did try and started taking it from week 4, i had all that worked out with my dr before hand and like you i get so angry when i see the posts from the 1st tri girls who are suffering so much from the lack of medical intervention and maybe a simple tablet to ease their suffering , its so frustrating so its so important to get drs to understand what hg is and does to us what you and kimber are doing is so very important and vital to the future hg sufferers.

!!!!!!!!!!THANK YOU!!!!!!!!

Jacqueline x

PostPosted: Oct 08, 2005 10:49 am
by stephensmam
I forgot to say id love to buy a tape to
Jacqueline x

PostPosted: Oct 12, 2005 10:29 pm
by Proudmama
Thank you so very much for taking time away from your busy life to travel to DC and speak on behalf of every woman and their families suffering (past present and future) from HG.
I would love to buy a tape. Have you heard any more about how we can purchase a copy? Please let us know. I would love to show it to my family.