Monday, July 15, 2013

For all those hyperemesis moms out there...

I go back and forth on how much or little I should share about my battle with hyperemesis gravidarum in this space. I don't want to complain, so I try to keep it light-hearted. BUT it has occurred to me that this pregnancy condition is rarely talked about, commonly misunderstood, and a source of true loneliness for all those who suffer from it.

I've heard it said before that one of the reasons we don't hear more about hyperemesis from survivors is because once you deliver that baby and the nausea fades...all you want to do is put it behind you. I wholeheartedly agree with this. I distinctly remember one of my first thoughts in the hours after giving birth to Sister Stinky (a long process, sans epidural) that if I had to choose between experiencing that labor again or experiencing my pregnancy with her again...I would choose labor. Every time. Because the nausea really is that bad.





A hard earned baby "bump!"


I know that, after I give birth to Baby Sister, I will feel the same. (At least, I hope that I am once again relieved of my nausea after giving birth and that it doesn't linger!) So, I realized that, if I want to share some of the reality of this experience with you, friends, then I'm in my final days of being able to do that.

I hope sharing some of this will help you to better understand anyone you may know who has suffered or will suffer from this terrible pregnancy condition. Because friends, the worst part about hyperemesis is the utter loneliness of it.

So, I wanted to debunk some common hyperemesis myths and close with a few grains of wisdom I've gathered from my second bout with it.

Myth #1 - Hyperemesis only describes those who throw up alot. 
No. No. No! I've thrown up with both pregnancies, but not very much. For me, hyperemesis is a crippling nausea and frequent dry heaving with some throwing up in the first trimester (i.e. being unable to leave bed for the vast majority of the time) and a source of misery and altered activity the rest of pregnancy (sometimes still confining me to my bed, still making eating difficult or impossible at times, etc.). It occurred to me the other day that some people might not have any real experience with nausea (even when not pregnant, I'm still prone to severe motion sickness at times) so this might be hard to wrap your mind around. But if you have ever had any nausea, imagine that ten times worse and lasting for months! I've had nausea to some degree every day since Thanksgiving 2012. That's a loooong time to be feeling nauseous. I do have some good days, but most days I am nauseous for at least half the day and sometimes even the whole day.

Myth #2 - Hyperemesis is just like morning sickness, but with more throwing up.
Wrong again! Hyperemesis is a tricky beast, and normally none of the go-to morning sickness remedies work for hyperemesis. At no point in this pregnancy have I been able to stomach the thought of saltines. Ginger drops and tea helped in a very minimal way (i.e. kept me from throwing up but not necessarily from dry heaving and definitely didn't stop the nausea). Eating small meals didn't help (although that was all I was able to stomach for a long time). Things that wouldn't bother someone with morning sickness are a source of pure torture for a hyperemesis sufferer (not just going off my own experience with it here, but including stories I've heard from other former hyperemesis sufferers). Fresh air often does NOT help a hyperemesis sufferer - on the contrary, fresh air has often made me feel even sicker at certain times of year and in certain parts of the country, because of my heightened and mixed-up sense of smell! My mother-in-law couldn't understand what I meant when I told her I can drink water because of the smell and taste...but I'm sure any hyperemesis sufferer knows exactly what I mean (many hg sufferers struggle to shower for this very reason). My food tolerances are strange...for example, spicy foods have been one of the only things that have helped my nausea this time around! There is no logic to hyperemesis, and it's different for every person AND every pregnancy!

Myth #3 - Hyperemesis isn't that bad, but sufferers of HG just build it up in their heads.
A lot of people, having never experienced nausea as severe or prolonged as that of HG just can't wrap their minds around what an experience like that looks like! Most women who experienced morning sickness in their pregnancies try to commiserate with the HG sufferer and can't understand why the HG sufferer can't push through the way they could. However, one of the symptoms of HG vs. morning sickness is being unable to take care of yourself, and unable to perform daily tasks. An HG sufferer may try to push themselves through the nausea - and may find that it lands them in the hospital. Overexertion (i.e. trying to do normal, daily activities) can cause the symptoms of HG to worsen to the point that you can't stay properly hydrated and may need to make a trip to the ER to rehydrate. Trying to perform daily tasks is not wise for an HG sufferer!



Post delivery. Finally nausea-free!


Myth #4 - Hyperemesis is easily treatable, and tends to pass by the halfway point of pregnancy anyway.
First of all, from my own experience and the women I've talked to, Zofran (the classic morning sickness medicine) does little or nothing for HG sufferers! Most doctors don't know there is any other option! My previous ob/gyn happened to order a compounded version of a  a medication that is only now being re-introduced into the American pharmaceutical world. This medication is the only thing that finally brought my dry heaving under control and lowered my level of nausea enough that I could get out of bed and get closer to normal functioning. Unfortunately, very little is known about hyperemesis, because little to no research has been done on it.

Also, hyperemesis does go away around the halfway point for many sufferers, but there are also still hold-outs like me! For us, the nausea makes the second trimester equally miserable, and the third trimester nearly unbearable at times.

Myth #5 - There's nothing I can do to help a friend with hyperemesis.
There is ALOT you can do! Friends, family, pastors...these people can be a huge lifesaver and can make living possible! For example, I wouldn't have been able to receive Communion at Mass for a number of weeks had it not been for our pastor. When I had to stay home from Mass (while we were still trying to stop the hospital rehydration visits), he made sure to send the Abbot home with Jesus for me. And when I returned to Mass and could only sit out in the vestibule and couldn't walk up for Communion, he brought Communion out to me every time. He came to our home to give me the Sacrament of the Anointing of the Sick - a definite turning point for me! (I doubt I would have had the grace to get through my first trimester without it!). And he just cared and was understanding.
Friends and family helped in a lot of different ways. Even though I couldn't eat, my husband and daughter still needed food, and it was hard for my husband to cook, work, and take care of our little girl. So meals brought for them were a lifesaver! Friends taking our little girl on playdates (especially when her Daddy was at work or in class and not available for back-up) saved me many afternoons. Family and friends going out of their way to check in with me was a huge help, too...otherwise I would just feel so forgotten at times!
The best advice I can give to someone wanting to help a loved one suffering from this? DON'T stop helping! We had a rush of offers for help in the first few weeks, but they dwindled down a lot after that - but my nausea didn't! We had (and have) a few friends who still offer to lend a hand and they have made all the difference! HG is not something that a family can get through on their own...they really do need outside support!!!


Supportive loved ones are a MUST for the HG sufferer!


Myth # 6 - Those suffering from hyperemesis could never have a large family. It wouldn't be wise.
This is one of the most depressing aspects of the HG support sites I've found. Most women who have experienced HG think they can't or shouldn't have more children. Now, I'm not saying that there aren't some rarer instances where the HG is so severe that the life of the mother and child are at risk and so future pregnancy should be postponed indefinitely. There are some truly terrible cases where a mother and child couldn't survive the fight, and where it might be wiser to avoid pregnancy (which is totally achievable through natural means, without having to resort to birth control). However, I think that two things are needed for the vast majority of HG sufferers - 1) support for them and their families and 2) doctors and a medical world willing to seek a cure for HG. Even with only #1, HG sufferers can still have larger families, but hopefully the medical world will start investing more into research of HG so that a cure may be found!
In the meantime, if you feel called to have a big family...don't despair! It can be done, and some women even end up having a pregnancy or two sans nausea mixed in!

All that being said (and I'm sure I'm missing something) HG sufferers want most to be surrounded by people genuinely caring and trying to understand what their experience is like. For most women, pregnancy is a joyful time (and filled with much eating!) and for a woman with HG, pregnancy is often a very mentally and physically (and even spiritually) challenging time. It can feel very lonely, since few people can relate to an HG pregnancy experience. That being said....having friends and family who truly want to understand - even if they don't perfectly - can be a total life-saver!

There are so many aspects of life with HG that someone having no experience couldn't understand - how isolating it is to not be able to bond with friends over meals for the better part of a year, what it's like to be incapable of doing much of anything at times, avoiding turning on the heater or air conditioning - even when desperately needed! - because the smells lead to such sickness...these are all little details of life that people don't think about. But talk to your loved one with HG - this condition affects every aspect of ordinary life!

                    

                                                The byproduct of HG is sooooo worth it!

And now for a precious piece of wisdom I've gained from my second bout with HG.

You see, HG makes no sense in the temporal world. So much suffering doesn't seem worth it - even if the end result is a beautiful child. BUT, BUT if we are orienting our lives toward the cross, even HG can be seen as a gift. Only in this life, in this world, do we have an opportunity to offer up our suffering and unite it to Christ's own suffering on the cross. HG, so prolonged and miserable, is a unique opportunity for offering up suffering. Thinking of it in that light makes it so much more bearable! Yes, I can't give to my daughters and husband what I'd like to at times because of the nausea - but in those moments I can offer up my sufferings for them and for the intentions of others in my life, and then my suffering ceases to be in vain.

Although I hate the suffering of this nausea (and have grown thoroughly tired of it and my small list of safe foods and of needing to curl up in a ball in the dark and quiet as much as I've had to and of things like watching TV or reading making me feel sick), I do acknowledge that the opportunity to offer up my suffering in love is a unique one! I try to bear that in mind on the roughest of days.

That being said...please do still continue to pray that I go into labor soon, that the nausea goes away once I do go into labor, and that I may be given the grace of patience and endurance in the meantime. If nothing else, HG has a way of breaking your spirit over time, and rest assured it has been a looooong 8 months of nausea and it has truly weighed me down!

Can you do me a favor? Can you say a prayer for all those who have suffered from HG, even those not currently pregnant? (Long after the nausea is gone, the experience can lead to depression and PTSD, among other lingering side effects.)

I hope these thoughts are helpful to you, friends. If you are a sufferer or survivor of HG - please know you are not alone! And if you know a loved one who is suffering in this way - please do your best to support them and let them know you truly care.

7 comments:

  1. Goodness, I can't imagine having to deal with this for so long! And I can see how it would be incredibly isolating and frustrating, not being able to participate in daily tasks. I think it's wonderful, though, the deep connection you found to grace, and that you allow others to help you - I always have a hard time asking for help, even when I know I really need it - but giving someone else the opportunity to do good is a gift to them as well as to yourself! Wishing you a most happy delivery (soon!)
    -Jaime

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    1. Thank you sooo much for your kind words. They mean so much!

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  2. This was a timely post to find. Prayers to you and your family on your imminent arrival! I too have suffered through 2 pregnancies with HG and it sounds about the same spectrum as yours only mine went away around 5 months to be replaced with prodromal labor and 2 months of mandatory bed rest (better than HG by a long shot but it was still crummy). With my first pregnancy it got to the point where I wanted to die. My second I understood the beast of my burden a little more and that helped me through. Yesterday I was terrified I was pregnant again. Like, end-of-the-world-crushing-painful-panick-at-the-thought pregnant. We are practicing NFP but with 2 kids it has been a lot harder to keep track of things. We aren't as of today but I've been having conversations with my husband about our options. I didn't realize NFP was really our only option (He's Catholic, I'm Lutheran). I was devastated. Every post online explained why and I get it but I just knew that "they" didn't get it.

    But, you do.

    It helps just knowing there are others who understand. We always wanted a bigger family but I was hoping to do that through adoption. I realize now though that we can't completely, medically close that other door. I cannot ask my husband to do that knowing what I know now. Thank you for your beautiful thoughts on orienting the suffering from a cross perspective. I'm sure I have heard it before but hearing it from the source of an HG survivor gives me a little more hope in surviving another pregnancy if that's God's will down the road. In the mean time, I'm going to be a bit more vigilant about my NFP.

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    1. I'm so glad you found this helpful!! My husband and I are both Catholic and practice the NFP Creighton model and have found it very helpful! So if you want any more info on that, let me know!

      Having a large family is definitely possible with HG! You just need to know what you're getting into, get some support from family and/or friends, and just develop the mentality "this is just how I experience pregnancy". It doesn't make you any less miserable but it does help you mentally get through!

      Also, I do know some moms who suffered from crippling nausea for the first 3-5 kids and then had a pregnancy with no nausea...so there's always hope of that, too!

      Btw, I feel so bad for you...HG and bed rest and long prodromal labor is an awful combination! I've only been experience prodromal labor for the past week or so...I can't imagine experiencing it as long as you have!!! You must be one tough cookie :-)

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  3. Thank you for this post!! I'm not sure if I had HG exactly, but I did have debilitating nausea for over half of my pregnancy (it probably would have lasted much longer, but luckily Zofran worked for me). I was re-reading a journal that I kept during that time and cried simply remembering how I had felt I lost five months of my life. I found that I couldn't even discuss pregnancy with anyone but my closest friends until the nausea subsided, because I was always so negative about pregnancy (not my baby - I was excited for her! But the pregnancy experience in general). Remembering the Atonement of Christ truly helped me survive those days!
    Thank you for this post, it's such a good description and hopefully it will help other women not to feel alone :) and it brought me comfort to hear your perspective on HG+large families!

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    1. It definitely sounds like you had HG...thank goodness the Zofran helped you! I honestly think that as awful as the physical suffering can be with HG, the loneliness and isolation that comes from it is even worse! I totally relate to your take on pregnancy...I like the baby but not pregnancy!

      And yes...so much hope for HG sufferers who want large families. Don't listen to what people say otherwise! You just have to find a coping method for HG at its different stages, and it is still miserable but not impossible!

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    2. My darling I had the same issue I had 3 children with hyperemisis , it was the most painful experience not being able to hold your child , not being able to live a normal life 😩

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