Saturday, September 29, 2012

The Value of a Friend

Back when I was pregnant in 2010, I pretty much had no one to talk to about what was going on with me - no one who could understand, that is.  Of course my husband was there for me but he was sort of at a loss as to what was going on and what to do with me (as was I).  I had some friends who stuck by my side during that time but none of them had ever been pregnant much less had HG, so they were also clueless.  Of course it didn't help that I could barely talk on the phone or in person.

Even though I became involved with the forums at and eventually on babycenter, all of the women were in America or other countries and I never really made that connection with any of them.  So as nice as it was to read that other people were going through the same things as me (actually, most of them were much worse than I was), I didn't really get that bond that I had been looking for.

Then comes a random private message from K earlier this year, asking if she could ask me a specific question.  Sure enough, K is another unfortunate HG sufferer here in Israel where the care for this debilitating disease is subpar, for the most part.  She was already in her third trimester but was still suffering a lot and struggling with an OB who didn't really have a clue about HG but was willing to go along with some suggestions that she brought to his attention.

Oh boy, was it nice to be able to help someone out while I didn't need help at that point.  And you know what?  I think that the relationship is very good for both of us.  We both get it.  Most people don't realize that the effects of HG don't just go away once you give birth.  Physical recovery can easily take a year and emotional recovery - heck, I'm still working on that one and LH will turn two next month.

All of our non-HG friends get tired of us talking about it and more or less tell us to shut up and leave the past in the past.  What they don't realize is that HG isn't only our past - it is also part of our present and, most likely, our future.  We can't just shut it out and forget about it.  For us, talking it out is therapeutic and helps us work through some of the fears and anxieties that are left behind.  We just need a supportive ear to listen.

I am so glad to say that I have found that supportive ear in K, and I really hope that she feels the same about me.  To give you an idea about the kind of person she is - she knows another HG sufferer (TG), currently in the hell of her first trimester.  TG is currently hospitalized and has been for more than a week because her HG is just out of control.  Well K hopped on a bus one day with her baby and went to the hospital to visit TG, then stayed late so that she could be there when the doctor made his rounds so that she could talk to him and be an advocate for TG and make treatment suggestions.  Thank goodness she did - the doctor actually listened to her and implemented several of the suggestions.  Mind you, she had 3+ hours of bus travel each direction to do this.  Isn't she awesome?

So yes, I have found a gem of a friend and that is so so so so so so so important when you are in the HG world, just trying to get by one day at a time.  If you are an HG survivor, network and try to find an HG sufferer and befriend her.  Advocate for her.  Do for her everything that you wished someone had done for you.  You never know, you might save a life.

Monday, September 24, 2012

Some People are Buttheads

My friend K recently sent me a great article that had been written by an HG sufferer and survivor for a women's magazine.  In it she details her journey through her first pregnancy with severe HG in all its wonderfulness.  I think she did a fantastic job, although I must say that if I had been the one writing it there are certain parts that I would have stressed more to help get the seriousness across.

The next thing I hear is that in a later issue of the magazine a woman wrote in to the editor saying that since this wonderful HG momma hadn't had a PICC line, then clearly it wasn't severe HG and she demanded the magazine print a correction saying so - which they did.

If only I could get my hands on that letter to the editor, I would write such a scathing reply that that woman wouldn't know what had hit her.  How dare she do something like that.  Seriously - how dare she?

A little education here: just because you don't have a PICC line doesn't mean you don't have severe HG.  Some doctors are unwilling to place one because of the inherent risks, and I have never ever heard of a woman being given a PICC line for treatment of HG in Israel (where the original writer suffered through her pregnancy).  There are a million and one reasons why a woman wouldn't get one.

If you look at the HER Foundation website at the list of signs of severe HG, there is nothing there saying "you don't have severe HG unless you have a PICC line".  I mean, seriously, are you kidding me?

Do you know what it feels like when you go through all that pain and suffering - and yes, it is pain and suffering - and then when you open yourself up to the world in the hopes of educating others, helping other mothers going through it, and perhaps finding some closure yourself - do you know what it feels like when someone comes along and says that you weren't really suffering like you said you were?

Let me tell you a story.  There was a terrible car accident and both drivers are severely injured.  One driver needs a leg amputation, the other leg is shattered, his liver is lacerated, he has severe whiplash, and multiple head injuries.  You would say that this man is in critical condition, yes?  But wait - the other driver has all of these injuries plus seven more and spends three weeks in a coma etc. etc.  Now are you going to go back and tell the first man that just because his injuries aren't as bad, he really wasn't injured at all?  No, because it would be completely ridiculous to say something like that.

So Ms. Letter to the Editor, let me tell you this.  No one makes up having severe HG.  No one will give herself that label just to feel 'cool' or to make things seem more serious than they were.  If she was diagnosed with severe HG, she had severe HG - end of story.  You, someone looking in from the outside who has absolutely no clue who she is and what she actually went through, have no right to belittle her suffering and to demand a correction.

It doesn't matter if you yourself are an HG sufferer, if you are a medical professional, if you are random Joe Shmoe off the street.  Unless you are this woman or her doctor, you have no right to say anything.  The only appropriate response to an article such as hers is "I'm so sorry that you went through that.  I will pray that you never go through that again.  Now I know about HG and if I come across a woman suffering from it, I know where to send her for information and I better know how to support her."

Clearly the woman who wrote in to the editor knows something about HG because she knows that (in the US) a PICC line is frequently used to treat the worst cases.  But she clearly doesn't know enough to shut the hell up and not make a bad situation worse.

So please, think before you open your mouth.  Sometimes really stupid things come out.

Sunday, September 23, 2012

In Denial

I have reached an interesting stage in my HGness: a sort of kind of quasi-denial.  You see, I would so much love to have another baby right now.  I mean, the cuteness of the first one (now about to turn 2) is just so amazing that you can't help but want another one.

The fact that I had HG in my previous pregnancy is indisputable.  Sometimes I try to talk myself into believing that it really wasn't so bad and that with proper care I would have been totally fine.  With proper care I would have been better, I'm sure, but I wouldn't have been totally fine.  And I can't let myself forget what happened because if I do that - I won't be adequately prepared for what might come with a positive pregnancy test.

Another interesting side effect that has manifested is a decided aversion to doctors, especially new ones.  We moved to a new city two months ago and even though I know I need to see a doctor for something, I have been stalling and 'forgetting' and refusing to make the appointment.  I saw a doctor every week while pregnant and so many times it was a disappointing experience where they had nothing to offer me but a 'wait and see' approach.  I just can't bring myself to pick up the phone now and schedule anything.

As I wrote in my previous post on preparing for an HG pregnancy, it is best to sit down with your doctor in before even trying to conceive and to agree on a plan of action.  I know how crucial this can be to keeping away from the worst of HG, and yet I still can't bring myself to go in.  What if this doctor is no good?  What if she doesn't know how to treat HG or won't treat it aggressively?  What if she won't give me the higher dose of zofran that I never got last time and yet could have made such a huge difference?  What if, what if, what if?

I know that eventually I'll just have to suck it up and do what I need to do.  But I can't quite bring myself to do it yet.