This site makes me want to scream sometimes!

[Brendel]

I hate to say it but not this site does not always offer real help. Where I live there is an agency called Kimpatorin aid where it offers help to mothers who have just given birth. This prevents a spiral into ppd. Instead of saying develop a support system why aren't we trying to coordinate one state by state. Maybe we could find out how kimpatorin aide gets the help. I don't have any support. I have a mother who won't help, an MIL who won't help because she feels my mother should, a sitter who is out the door when I walk into it and a husband who's also overworked. What am I supposed to do about planning for a third? Especially since the thrust of this website says that no matter what vitamins you take, what treatments you do, you're going to end up sick anyway. I hate to say it, but I'm not sure what help this site can offer. Who wants to coordinate some real help? Sorry for the vent. Any takers?

[kathleen]

I understand your frustrations. I've never been to the site that you mentioned, I never even knew that you could get "real help" online. To be honest, I never even knew this condition existed until I found this site, it brought back my sanity because for the longest time I was told and believed that this was in my head, and I was completely alone with it. It gives me strength to know that there are so many out there who are going through what I'm going through and they are making it day by day, just like me. And I was just being whiney about my sickness. I knew full well when I signed up for this site that it was mainly for support and advice and for the most part, I'm really pleased with it. I know that there is no cure for what we have and the honest truth is that no matter what you do or what you take, yes, you will probably be sick until the very end. But a great group of ladies like these make the time go by MUCH faster for me and help me get through my days and wee hours of the nights when I just cant do it on my own. I'm sorry if you didn't find whatever it was you were looking for.

[mammaclare]

I am so sorry that you dont' feel that this site offers real help. Many would disagree as the simple knowledge you aren't alone can make a real difference for HG mommas, as can the wealth of information here.

I'd look to the name of the Foundation to see its mission--the Hyperemesis Education and Research Foundation. In terms of its mission, I believe this organization very much meets its goals. There is no other place on the Internet with more comprehensive information on the disease, its potential complications, its diagnosis, its treatments, etc. Additionally, funds raised by HER are intended for research of the disease so that maybe one day we can know enough to do more to prevent or treat HG.

The forums do offer support, and the buddy system can provide more personal support, but you are right--there is not physically available resources such as sitters, housecleaners, etc. I think (and I hope Kimber will correct me if I am wrong) that the funding needed to supply this kind of help to HG mommas all over the world would be beyond tremendous.

I googled Kimpatorin Aid and it appears to be local to NYC/Brooklyn and well supported by several funders in the Jewish community. It sounds wonderful, and it would be equally wonderful to be able to have local "chapters" of the HER Foundation to provide hands-on support to HG mommas. Perhaps that could be a long-term goal, but the financial backing needed would be huge, and if HER is to continue in public education and research, it would likely be up to local chapters to raise their own funds. Maybe it could pilot in a couple of larger cities? There would also need to be a strong local volunteer base, and sadly most women who find us do so in a time when they can't even care for themselves.

[krdoty]

Brendel -

I'm sorry that you don't find this site helpful. I think that this website is true to HER's mission statement. One organization cannot provide everything.

I forgot to check your location before I posted, so I honestly don't know if there are any users near you. I can tell you that after posting here, and also offering as much support as I am able, that I have had offers of help. Some women who live far away have offered to chat on the phone to help combat the loneliness. Many have helped me brainstorm to figure out ways that I can get through my day with less nausea and vomiting. A few locals have asked me what they can do to help me through this pregnancy.

[JennyK]

The HER Foundation has given me substantial help over two pregnancies. I learned about treatment options to best manage my illness, how to prepare for a second pregnancy, and got support from others who have suffered through hyperemesis. I'm sorry you don't feel this site has anything to offer you.

[IslandDreamer]

Kimpatorin Aid looks like a fabulous program. And, I agree, it would be nice to have something like that in my area for HGers, but I don't think that is part of the mission statement for HER.

The Foundation's focus is research, education, and awareness, and those areas are a tremendous strength: the most comprehensive research, a briefing on capital hill, resources for loss and other complications, etc., not to mention creating/establishing this forum. The forum itself is a support system and tool for education and communication.

I hope you're able to establish the program you seek. That would be wonderful.

[justme]

I understand your need for help in the midst of hg - it is a horrible disease that can be very disabling. I am so sorry that you have it.

This site has been a tremendous help for me in helping me to explain to others in my life the reality of hg, the toll it takes and how they can help (including my doctors). The resources can be life changing. And as for the forum - well it has helped me tremendously in knowing that I am not along, getting real emotional support, and I have found women around me that can help me and I can help them.

Perhaps using the information from this site can help you find physical help in your area - take the information to a local pregnancy center (those run by Christian organizations are often available for counseling regarding unplanned pregnancies and should you explain your need they may also be willing to help you, I hope). If that is not a possibility, then perhaps you could contact a local church that you feel comfortable with and again, using the info from this site, ask them for the type of support you may need outside of this site.

If you feel comfortable, please contact PamelaRose and see if she has someone in your area that may be willing to not only by a support buddy - but whom may be willing to come help clean the house, etc. I know that I personally am willing to do that for any hger around me as I do understand the desperate need.

Again, I am so sorry that you have hg. I hope that you will continue to allow us to support you and help you in whatever way we can.

Hugs,
Karen

[PamelaRose]

Perhaps you could ask Kimpatorin Aide to work with you during the worst of an HG pregnancy? Many HGers suffer from depression during pregnancy and deal with ppd fallout that is magnified by HG and its complications. If the goal of the group is to prevent ppd, maybe they'd consider being really proactive and helping out earlier in the case of a high-risk pregnancy.

We advocate being proactive because it's the only way many of us can hope to be "better" in future pregnancies. HG is multicausal, and there's nothing that can cure it or even guarantee to make it better. Planning and preparing can make it easier to endure, and in the process many women build up a support network through these forums. The online friends who went through my last pregnancy with me never cleaned my house or watched my children, but they got me through my darkest days with their insight and information and inspiration. I agree that an orgainization like Kimpatorin would be a great asset to HGers, but so far I don't know of anything like that. Perhaps someone who reads this thread will respond to that calling!

As for local HG chapters, the goal has always been to eventually have HG support groups in every state and major city and in the countries represented on the forums. And we're getting close in some areas. In places where I have a few ladies on the volunteer list, I've been using group emails to try to get them in touch. Some are eager, some are too sick at the moment to get involved, and some want to put HG behind them and move on. We see those same dynamics here on the forums, too, and it means the HG world is never the same for long. But we do have the beginnings, and over time I do believe that we'll be able to have regional HG support. We're taking it one day, one volunteer at a time right now!

[mrsbigdog]

I just want to say that this site saved my sanity during HG last year. The information available was more than I had ever seen in one place and just knowing that others were going through the same thing made a huge difference. The info we share with each other and the encouragement are priceless. My first HG pregnancy was way back before most of us had even heard of the internet and the second was back when very few people had regular access. The difference that access to a sight like this makes can only be appreciated when you have lived through a time when support from others was not available.

I'm very sorry that you need actual, physical help with things and do not have anyone you can rely upon to meet that need. That would make any pregnancy tough but especially an HG one. We did receive help in the form of meals from our church and we had offers of help with other needs (rides to drs, grocery shopping, cleaning, etc) which we did not accept. Perhaps you might be able to find support from a source outside of your own immediate circle.

I think this website does an excellent meeting the goals of the foundation and I want to thank everyone who gives so much to keep it going.

Donna

[tgger007]

I am so sorry you did not feel that this site has been much of a help. It was an amazing amount of support for me during some of the darkest times I have gone through. No, it was not able to send anyone to my house, but it gave me an outlet to vent, cry, and discuss ideas when I did not believe I could make it to tomorrow.

I would love to have a foundation and areas like you have mentioned. I believe we are slowly growing supports where that could be an option. But I do agree that some people after having HG just want to put it behind them. It is also such a small group of pregnant women that it has been hard to get the word out. My own Dr did not really know/understand about it.

Good luck to you in what you seek.

[Ivydragon]

HG touches and affects all parts of a woman's life, and part of the support we offer is advice in trying to decide what information to believe. So many women are told myths for treatment, and that HG doesn't happen every pregnancy. We are still counteracting wrong presumptions about HG.

The current website and organizations you see here are rather young. My first HG was 12 years ago - few people had computers, let alone internet access. I didn't know anyone else who had HG, and despite having a mild case, was the most sick of anyone I could talk to. My 2nd pregnancy was in 1997. My husband and I found some information on the internet which told us that we were lucky I wasn't dead, or hadn't bled from my eyeballs, and should have been having lots of eye appointments. Great - lots of help!

In 2001 I personally began reseraching HG. By then Kimber had her first HG site up, www.hyperemesis.org, and home internet access was common - and I found a discussion forum at delphi called the HuGS forum. There was no active moderator, the creator wasn't actively posting, and there were around 20 women. Within a year it had grown, and I asked for ownership. 2 1/2 years ago I moved it here, merging with Kimber's forum so that there would be one excellent resource for education and support. The forums you currently see are only 2 1/2 years old.

We actually have women who have now been volunteering their time for years for devoting support and time towards helping other HGers after them. Still, as Pamela mentioned, the turn over rate here is very high. Gradually more and more women stick around after their births to help support other HGers, but many are here for their pregnancy, and then gone. It's reasonable to expect so. We are women in our prime. We are in child bearing and rearing years, and we are bearing and rearing children. All of us either have a child, or children, or are pursuing a child or children. We know about HG, and face the reality of the impact in our lives. Without the internet, the possibility of knowing another HGer is a relatively small thing. I've met 3 outside of the forums, and none of them are friends, or have felt the need to keep in touch purely because we both had the same pregnancy diagnoses.

For quite some time we didn't have two HGers from the same state, let alone similar geographic regions. Now we've seen HGers meet in real life, but only a few since pregnancies are the main goal around here, and they aren't exactly conducive to travel and new friendships in real life.

It has long been a hope of mine that we can grow large enough to establish local chapters - but funding is out of the question - it'd all have to be grass roots self-funded attempts. That's what it's all been. All $ that is donated is put directly into research. No one has been paid for their time here - except for the web computer people. Much of the funding to keep things going comes from the pockets of those who are devoted to its creation. All of the women here who are in positions of responsibility volunteer their time. Keeping moderators in all positions here has been a challenge, let alone even contemplating trying to keep women actively helping in a local capacity.

We are hoping that by having an interactive online community that women form lasting friendships and create a net of connection that stays strong for decades - because research needs to be done on the long term impact of HG - for our children, and for ourselves. In the meantime, I'm hoping that we can continue to have a strong online support group. We have over 1,600 registered users - that's a really tremendous growth rate - but we certainly don't have 1, 600 active posting daily users. Eventually, we hope to develope local support groups, but it can't be rushed, and it depends largely upon the decision of each HGer after their last pregnancy. Do they move on and forget HG ever touched their lives, or do they stay involved despite knowing that they will never conceive again? You can check out the adoption and the no more for me forums - look at the number of posts compared to those of the 1st, 2nd and 3rd trimester forums - there is a large majority of HG sufferers who are not yet done fighting HG in their own trenches - and we're going to need a whole lot more who are done with pregnancy wanting to stick around before we can develope a stable enough system that would support local chapters.

If you have questions about preparing a protocol and taking a realistic look at if another HG pg is right for you - feel free to seek me out in the preparing for HG forum.

Andrea

[Gracie]

Just my opinion, but the site saved my sanity during my last PG and without it being here, I would NEVER have attempted another PG.

I've had a PPD in the past and I feel that the support of the women on this site prevented another for me. Knowing that you are not alone, nuts, a hypochondriac, a pampered princess or just looking to make everyone around you miserable is VERY helpful when coping with HG and less than compassionate bosses, coworkers, friends, and others.

The info and advice in preventing dehydration, med protocols, side effects, etc... is extremely useful in making an HG pregnancy the least "miserable" as possible.

[teddi]

HER is relatively new. And it was started by one person (well I know Kimber spear headed it w/AnneMarie). To start a foundation is terribly hard. And when you've got like ... two of you? And you've got .. the money in your savings.

HER is really a baby foundation, when you compare to other, larger, well funded organizations. Hopefully state chapters will happen in the relatively new future.

It's really UP TO US to raise $ and awareness and do the work to combat this disease.

In 1999 when I was pregnant with my son, I had internet access and AOL and was online (before a majority of Americans were). I searched and searched. That's when I found the newly baby new group on the Delphi Forums. That's now morphed into the forums here. Back then the Hugs site existed, just a collection of stories and links to the Delphi forums. The first time I "met" another mom online was like...1 month after I was delivered.

And in echoing Andy's comments about women staying and going. It's literally not easy for me personally to stay around and read posts. I want to help, and I will. But probably a good 80% of the time, I am very saddened at what some of our moms go thru. OUR moms, that's truly how I feel toward the other women here. And it's hard to be able to commit emotionally. There are times and days I'd rather just... be happy and in the moment and not relive the memories. But I still because I care alot about what I went thru, and helping in any small way to help other moms get thru. And get their babies here.

That's what keeps me personally going. And when and if the time comes for local chapters - I've already offered to start one here!

Baby steps in getting where we'd like to be I guess.

[Xphile_mo]

I would just like to say also that I feel it's a real shame that you didn't get what you needed from this site.

I am now 18 weeks pregnant and ONLY with this site and the fantastic women on it, have I managed to get this far. Being the only person I'd ever heard of with this condition (which the doctors still didn't tell me I had - saw it on my notes!) was really hard as everyone around me was treating me like a complete drama queen!!! Like I was just being pathetic about morning sickness and should get a grip of myself.

It was really only after they discovered I'd missed my entire honeymoon through vomiting AND ended up in the ER there (after waiting my ENTIRE life to go to NY) for i/v fluids etc that my friends and family realised I wasn't just suffering m/s. That helped them - but not me! I felt like a freak! NOBODY is this sick just by getting pregnant .... or so I thought. Finding the women on this website was an absolute godsend for me and I couldn't have coped without their encouragement and advice about treatments etc. They have been far more use than ANY doctor or midwife I've seen to yet and are nice enough to take time out of their own busy (or extremely ill) circumstances to lend an ear!! Some even contact you personally to give you more information if you need it!!

I LOVE the women on this site and hope to become a similar model of support after I have given birth and gotten over HG. I know how much it has meant to me, and if I can help just ONE woman know she's not alone then that's a brilliant achievement.

For those of you who don't find the help here that you need, I do empathise - we ALL know here how debilitating and mentally draining HG is and to think anyone has to go it alone is just horrendous. I send hugs to you all xx

[JasmineHG]

I will try to stay as positive as i can but i felt hurt by your post. What exactly are you expecting? If this place did not fulfill your needs- there is no point to trash it entirely. There might be other places more suited to your needs right now with PPD- i feel that this site truly centers around the throws of HG and batteling the daily illness. I feel as though you are throwing stones sort of speak and i am highly protective of this site and the angels on it. I believe this site has saved my ife and i can not imagine my pregnancy without it.
If it didn't meet your needs, sorry, move on I guess to a place where you can get the support you need. Thank you for stating your frustration and i am sure your opinion will be valued and your concern addressed. I am so sorry you are having a hard time- please do what you can to find some place that will give you the support you need. We will always be here for you no matter what- but there is only so much a "chat/forum" can provide. Please advocate for yourself and get the help you need....

[winter-soul]

brendel
you sound really pissed...not so much at this site but at your situation. its very frustrating to need actual physical support and not have your needs met......

when you said you were planning for a third does that mean you are considering having another baby?.....or are you currently pregnant? i may have misunderstood.

unfortunately there isnt a thing ANYONE can do to prevent you from developing hyperemesis. and that has to be a consideration when planning a pregnancy. if you have hg you will need help...you can get lots of emotional support here, a place to talk it and be undedrstood. I have printed much of the information on this site to give to my family, husband, therapist and so on to help them understand what i am going through. I have learned about medical options, and medications to make pregnancy easier.

all of that said of course there is no vaccine against hg. its a little known or understood illness and from what i understand fairly rare. after my bout with hg i determined not to become pregnant again...not only because i couldnt handle the physical aspects of the illness, but also because my support was so minimal the first go round i knew it would be impossible to take of a child and go through hg again. the baby i am carrying now was an accidental pregancy, and i have muddled through as most here have, but i will take every measure to be certian i dont become pregnant again. and do my very best to enjoy fully the daughter i am blessed with and her sister due in december

if you are considering a third child your right to look into any support you can get beforehand. i hope you can come up with a plan that provides what you will need. there are also options apart from carrying your own biological child...of course all of that is another matter and entirely personal to each mom. if you are currently pregnant, you have my empathy. if i could offer more, i would
winter

[jadeinoz]

I must say I disagree. This site has given me the strength to 'demand' help from health professionals. We are all spread around the globe - so 'real' help wouldnt be beneficial. I believe that if it wasnt for this site, i wouldnt have been pregnant. I was contemplating abortion because of this, and if it wasnt for this site, I would have gone ahead with it. They have given me the strength to get through it one day at a time, and its more real than any help that I have ever got from health professionals.