educating ourselves and our families.....

Are you pregnant again after having preeclampsia once already in a previous pregnancy? Post your thoughts/concerns here - there are others who share your feelings. This is also the home of our Bedrest Buddies Support group.

educating ourselves and our families.....

Postby meljoi » Fri Apr 09, 2004 08:07 am

I am interested in knowing any tactics you all might have in educating our families regarding PE-without getting the reactions that I am getting. My mother (a former Toxemia sufferer) whom I sent the address to this website to, refuses to even look at it. My DH, who was my rock through Peyton's very difficult (an painful) pregnancy and delivery thinks I am vesting too much of myself in this website. I know the birth of Peyton and witnessing what all I went through tore him up and maybe it's that fear that is keeping him from wanting to know more. It seems that when I talk about PE his eyes glaze over...he doesn't share my enthusiasm for wanting to educate myself and my family regarding PE. Everyone's reactions seem to say.....that I should not read about PE, educate myself, or try to educate them. Almost as if pleading ignorance will cause PE to skip over me this time around.
Whereas, I feel as though my diagnosis came so late last time and because I now truly believe I had it so much earlier-I feel as though I need to know every possible warning sign. After all-educating myself about PE is not going to GIVE me PE ! I am somewhat frustrated.....I know I am early in this pregnancy (6wks)-I am not talking about PE nonstop with everyone, but I feel as though some effort could be made on everyones part to try and understand what it is we actually dealt with last time-and hopefully will not have to deal with again. Because the diagnosis and induction came back to back-I think everyone feels that
aside from the difficulty in delivery-it all went very smoothly. Nevermind the dizziness and racing heart for months after Peyton's delivery-which I now associate with the aftermath of PE......no one thought it to be anything, even myself-I thought it wast trauma caused by the diffult delivery.....something every mom goes through. After educating myself now, I feel quite differently.
So....before I write a book here, if anyone has any GREAT tactic on how to inform others-without making myself look completely paranoid...please let me know.
(but shouldn't I be a little paranoid, anyway????)

Melissa Joi 32
DH Jeremy 43
mama to Peyton John 12/04/00 (severe pre-e @ 38wks)
2nd babe due 12/04
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Re : educating ourselves and our families.....

Postby sandy » Fri Apr 09, 2004 08:36 am

Great question...what has worked for others? I have the same questions. Thank you for asking it.

~Sandy/DD born via emergency C at 35 wks/1 day June '03 due to Severe PE/class III HELLP/chronic HBP/asthma
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Re : educating ourselves and our families.....

Postby lauras » Fri Apr 09, 2004 09:16 am

I'm not responding with an answer (Sorry!) but I'm glad you posed the question. I'm totally paranoid and no one I know wants to talk about it, either. My DH is wonderful but he doesn't want to worry about things unless they start happening. His approach is we'll do what we can and take what comes. I am really envious of his calm. Most everyone else I know pretty much avoids the topic of pregnancy around me.

I hope there are some interesting replies to this topic.

Laura 32
DH 32
Isabella 11/25/01 - 30 wks -severe pe
Another girl! 8/24/04
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Re : educating ourselves and our families.....

Postby annegarrett » Fri Apr 09, 2004 09:30 am

I have to jump in here because I am the original preeclampsia zealot (she says modestly) and if ANYONE is accused of talking about nothing else--trust me--it is me. My youngest is 4 1/2 years old so I have been rambling on long past my "expiration date". I am sure it gets tiresome to the people around me. I know my (ex) husband was not as excited about knowing about it as I was, I know my mother was very defensive about it all. She didn't want to know.

I think this is a natural and normal reaction on some people's part to what they perceive as a life-threatening event. I think I am the same way. My mom had terminal cancer for years and I really could not think about it because thinking about it made it real and what could I do about it?

I am going to sound like Ann Landers here but you know I think everyone copes differently and you can only change yourself. You can do some honest self-assessment and see if you do have balance about the issue (I appreciate your zeal so am not suggesting you don't!) and you can also appreciate that how you cope is going to be different from those around you. I bet they are reading up on the issue in their own way and own time but just not wanting to really dwell on it. The truth is our site does largely show the worst case scenario because those are the people we attract--the people who have had the worst experiences. People who have mild PE and sail on through blithely unaware don't log on here and focus on PE for the next pregnancy. And we don't want them too. 25% of our women are women who have lost babies. That is an abnormally high number compared to the normal rate (which I don't remember off hand but will find out) and those who write their stories are people who largely have been through * and back. While it is the norm HERE--it is not the norm for the disease and we do need to keep that perspective.

All that said--I obviously fully agree with being armed to the teeth with information--but you can't force others to feel things the way you do and even though they may not be expressing it in the same way you would--I have no doubt that they care and worry very much about you. Trust them to find the information they need in their own way and own time. Men in particular have a very tough time going into that painful place that PE sometimes takes them. I can't imagine how tough it was for my ex-husband to watch me as I nearly died and to be thinking about the 2 kids he would have to raise on his own. He won't talk about that time to this day--and despite the fact we are no longer married--he truly feels great sadness over that time and I know it forever changed him.

ANYWAY--that is my perspective. Hopefully it helps.

Take care,

Anne Garrett
Executive Director
Preeclampsia Foundation
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Re : educating ourselves and our families.....

Postby laura » Fri Apr 09, 2004 09:50 am

For me, my husband had to actually MEET Anne before he was on board... Then he became a quasi-zealot himself and began accosting pregant women and asking them about their swelling[:p] He gave the PE speech to a woman who was SEVEN WEEKS at a wedding over the weekend. I have to reign him in. He still doesn't spend any time here- but at least now he 'gets' it. He just processes info in a different way than I do. His eyes glaze pretty easily over most things.


I think before, we were just these weird women who worked each other up... now he gets it. Also, when we did the first bout with severe pe, he (and I!) didn't really understand what was going on, we didn't know that the recovery process was so hard, and neither of us was prepared for the emotional fallout.

Also, too, I was disappointed that the people in my life didn't understand the process, but eventually I accepted that this was my deal to work through, and I just let it go.

AND SOME PEOPLE NEVER GET IT. My inlaws were here recently- my FIL was pushing us to have another child (our second will be 1 yr next week) and I responded that I don't want to. Why? Because I can't afford to get sick again and spend another four months on bedrest with two little kids to care for. His response? "Nothing's going to happen. why are you so negative all the time? Just think positive" Well, I'm two for two. One is chance, two is a trend, three is habit. It would be plain irresponsible of me to make another one without some serious planning beforehand. But will anyone ever get it? I doubt it. *sigh*



Laura
Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/
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Re : educating ourselves and our families.....

Postby deerhart » Fri Apr 09, 2004 10:19 am

I think I got a bit lucky that people probably expected this out of me.

Simply put, everyone who has baulked at me I tell them THIS is who I am. PE has simply become another thing in my life that has helped to create and shape the person I am today, just like athletics did in high school, and how law school will in the future.

My husband is supportive, not because he understands it or because he wants to think about it, but rather he knows its impotant to me and its just as much a part of me as our 2 children are.

My children came into this world when they did because of PE, and who knows what that will mean to them in 25 years.

We are like cancer surviors, for many, its not something they just shove behind them and say its done and over with but rather they take it to heart and it becomes a part of who they are, to the point its a label after their name.

Quite frankly, if it does mean that much to you, do what you want and tell them that it means that much to you. Then they have to make the choice of either ignoring something important to you (which can have some major drawbacks), helping you foster it, or giving you room and some encouragement.

We do not stay constant as a person, we grow and change depending on the circumstances and experiences we go through. This, like any other diagnosis is something that has to be ingested, processed, and then dealt with. Everyone deals with it in many different ways and people move through the process at different speeds.

Personally if it was me (and this is just what my personality is LOL) I would tell them to stop brushing me aside and if they prefer to ignorant and stupid so be it, but that I am not going to be the fool as its my life, my body, and my children going through it, and I dont give a hoot what they think I should do because last time I checked ignoring something never stopped it! (okay I am not very nice sometimes, but I did when we were discussing having our 2nd child have to tell my husband that it upset me greatly that he had a don't worry this won't happen again attitude whenever I talked about PE, and it was a protection mechanism for him, he was scared it would happen and didn't want to admit it could because then he had to deal with the fear)

One other thing that seemed to help here was to actually have someone in the medical field explain the condition to them. My OB was fairly open that we had about the same chance to get it again the 2nd time as I did the first. I also had doctor friends that sat my hubby down and set him straight on what PE really can do to me and the baby.

Also, everyone's perceptions and reactions changed once again after I had my blood tests done and they came back showing blood clotting issues.

Erin

Moderator - First Time Moms, Parents of Preemies
Missouri State Coordinator
Mommy to Alex and Mason
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Re : educating ourselves and our families.....

Postby paljane8 » Fri Apr 09, 2004 10:22 am

Just along the same lines. I think sharing those "stressful" details with those who understand and can offer support is crucial for you. Those in your life who can't right now may still be processing the trauma at their personal comfort levels. Please know that this forum is a place you can share. Those pivotal people in your life may (like Laura's husband) come around over time.

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-4yrs (PE)
Janie-5/03 (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/
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Re : educating ourselves and our families.....

Postby catherine » Fri Apr 09, 2004 10:27 am

ITA with Anne and Laura, I just wanted to chip in one little bit.

I think that many people will understand and sympathize with the concerns of a mom who delivered a preemie and had to go through the rollercoaster of NICU when she becomes pregnant again.

For the rest of us....so many people think that if you get preeclampsia close to your due date then by definition it wasn't anything particularly serious. It's an "ugly" disease, you swell up like a balloon and often don't have any other visible issues. How many of us even want people to see the "new baby" pictures where we are captured forever resembling Shrek? Plenty of people walk around this country every day with severe hypertensive issues and think that 140/90 relatively low! For the vast majority, delivery cures the problem and the fact of your recovery is lost in the normal post-partum period. Often, you didn't notice or couldn't tell what was normal post-partum and what was post-preeclampsia. This may lead your family to think that it probably wasn't such a big deal, they aren't necessarily as concerned as they might be over things like preterm labor, haemorrage etc. Perhaps that's why so few of us knew anything about it at all until we happened upon preeclampsia by ending up at the most severe end of the spectrum.

I think that these factors contribute to other people not getting it. One person at a time I guess.....

Catherine
Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors
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Re : educating ourselves and our families.....

Postby meljoi » Fri Apr 09, 2004 10:28 am

Thank you Anne and Laura for your responses.....and to the other gal's for chiming up and making me feel like I am not alone here in hating that people think I am completely paranoid.
I agree, maybe educating myself is most important, it is *me* that will be going through the pregnancy. And I think DH's glazing over and lack of discussion is total fear-aside from you gal's I just really feel like I have no one to discuss this with. All my close friends had WONDERFUL pregnancies-PERFECT deliveries....something we all pine for. They are willing to listen, but I truly feel as though it's like,
"enough already-get over it"....god, I wish I could. I long for a calm mind that isn't plaqued by why, when and what if. So, all that being said, I am going to try and silently educate thyself! And with the help of you wonderful women.......I will find some calm!

on another note.....is it only moderators that can have their photo along with their post? If not, how do ya' do it???

Thanks again everyone.

Melissa Joi 32
DH Jeremy 43
mama to Peyton John 12/04/00 (severe pre-e @ 38wks)
2nd babe due 12/04
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Re : educating ourselves and our families.....

Postby meljoi » Fri Apr 09, 2004 10:38 am

well.....A bunch more of you chimed in while I was about to post.

I want to thank each and everyone of you......
you understand, and I can not tell you what that means to me.
Maybe DH and the family will come around,
Deerhart.......I envy you!!! I hate to call myself passive.....but-well, I am passive. Hey this might be cause for me to become assertive, right? I vowed that I am going to be assertive with all my medical care this time around...so who knows, watch out family!!!!!!
ha ha

Really, you guys are great
Thank you so much for the support!

Melissa Joi 32
DH Jeremy 43
mama to Peyton John 12/04/00 (severe pre-e @ 38wks)
2nd babe due 12/04
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