HG Awareness Day -- Our Journey

In the same way that HG seems to have completely taken over my blog for the last almost-year, it completely consumes your life. I still have not completed the PICC line series because I am editing pictures for it, a surprisingly long process, but I wanted to do this.  You see, today is Hyperemesis Gravidarum Awareness Day.

Didn't know there was such a thing? 

Yeah, me either, until this year anyway.  In fact, prior to this year I was completely and blissfully unaware of pretty much anything to do with HG.  Ignorance, as they say, is bliss.

While I certainly shared a lot here on the blog about infusion pumps, IVs, and doctors appointments I feel like I never really talked about HG.  I know that sounds really contradictory, but I rarely touched on the emotions or described how sick I was, it was certainly implied but never explained.  This was largely because acknowledging hell, while you are walking through it, is incredibly hard to do.  I worked extremely hard at remaining positive, and admitting out loud how hard day to day survival was ... well, that made the reality, the depression, and the fear all that more real.  It was easier to just focus on the mechanics of day to day living -- how to use a Reglan Pump, how to sleep with an IV hooked up to you -- rather than begin to touch the explosive iceberg of how it made me FEEL.  

I think I will attempt to do that now.  Because this condition is horrible, and the only way we will ever be rid of it is to build awareness and hopefully a cure someday ...

The hardest part of HG, emotionally, is the isolation.  It is deeply, profoundly, cripplingly isolating.  

Showing off after my first IV.  I had over 40, not including
the 24/7 infusions with the PICC line.

I was bedridden at first, so I was away from my husband and children.  I couldn't go anywhere at all for the first several months, so I saw no one outside of my immediate family.  Even once I was a little better, actually socializing was pretty impossible.  I couldn't go anywhere with food for fear of getting sick.  

And no one gets it.  I had a lot of loving people around me, but I was the only one vomiting bile several times a day.  I wouldn't pretend to understand what it was like for those who love me to have to watch me deteriorate, either.

The time that is meant to be your happiest is also your most miserable.  You are robbed of the joy that pregnancy brings.  While no one is comfortable for ALL of their pregnancy, the very nature of it is physically a challenge for most women, there are still good days.  Still things to look forward to.  While the end result of an HG pregnancy is the same as that of a regular "fluffy" pregnancy -- you have a baby -- the joyful stuff is difficult, if not impossible, to just enjoy.  

How much medication will I have to take to not puke on my guests at the baby shower?  Will I even be able to sit up that long?

Every time the baby kicks you get more nauseated, its like motion sickness from the inside.

I don't marvel at my changing body, I weep as I see myself deteriorate.  

While I get to see my baby a lot at all these ultrasounds, I hold my breath for the first 10 seconds until I see that flash of a heartbeat is still there...

Small sample of medical supplies

My first trimester is a blur to me now.  Honestly, I don't know how we survived.  I barely made it out of bed most days, I hid under the covers, dry heaving and sobbing, while my husband cooked the kids dinner.  I started to loose weight, first only a few pounds, then twenty.  I could see that my legs had actually atrophied from being so bed-ridden.  Neither my husband nor I really told anyone.  At that point we were both really thinking this would lift soon, surely.  I shared much of my later trimesters on Facebook from my phone with friends and family who'd ask, but I couldn't even get to the computer in the beginning or stand the sight of my phone scrolling.  When I was able to, I had to stay away from Facebook and Pinterest because of all the food posted on both.  

At the end of that first trimester I was incredibly sick despite being on pills and my doctor panicked and began my home health care journey.  Any hope I had that I would be "normal" again was foolish, but I wasn't at death's door anymore.  Anti-nausea medication is poorly named because it does not, in fact, remove your nausea.  It makes it so you throw up less, if you are lucky.  Treatment for HG is more hope than science, the medications I was taking are not approved for use in pregnant women and are usually given to those undergoing chemotherapy.  

I eventually did get a reprieve from the actual throwing up, but I never stopped the nausea or dry heaving.  I actually wretched so bad the morning of my induction I was scared I would pull muscles again and it would hinder my ability to handle labor.  

While other pregnant women could look forward to things, I was surviving.  While other pregnant women could indulge in cravings I was avoiding food at all costs or identifying my "safe" foods (the ones I magically could keep down or were less punishing for me to throw up).  While other pregnant women were combing over baby name books, reveling in the exciting hope and plans that come with the addition of a new person to the world, I was vomiting thirty times a day.  I was hurting, everywhere.  I was dry heaving more times than I could count with such force I pulled muscles.  I burst blood vessels in my eyes and capillaries on my face with the force of my throwing up.  I didn't need to see or think about, or smell food to get sick, the way normal women with morning sickness do.  Speaking, the simple act of opening my mouth, would make me throw up.  I would whisper to my husband when he'd ask me something, because the vibration of my vocal chords would make me throw up.  I had the constant taste of death in my mouth.  I was so weak that moving at all, was just too much some days.  

Source: http://www.helpher.org/

My stomach was covered in bruises and welts from my infusion pump and my bad reactions to it.  My arms were littered with puncture marks from IV sticks, at least half of them failures.  My veins were so scared they were palpable to even my untrained hands because they were so hard.  My lips were permanently chapped from the near constant state of dehydration.  My gums would bleed because of how much I was puking and because I could barely brush my teeth because the toothbrush made me gag -- a sick irony if you ask me.  I have scars from both of my PICC lines.  Our house was taken over by medical supplies, boxes arrived each week and my husband moved furniture based on how easy it would be to drag an IV cart around.  

I wanted desperately to not be pregnant, but was simultaneously terrified of my pregnancy ending.  I was supremely guilty for thinking of myself.  I wanted relief, and the only way I'd get it was to survive until my due date. I was terrified that I wouldn't get better, that we wouldn't make it, that there would be some horrible lasting impact on my baby from lack of nutrition or the countless medications I was taking.  Some women with HG suffer from organ failure.  Some women lose their baby.  Some have even died themselves.  

It was hell.  And few people can begin to approach understanding it because we all have our own experiences ... and we all have our own challenges and crosses to bear.

At three years old, the Beans drew me with an
IV and infusion pump because it
became normal

HG was undoubtedly the most challenging thing I have ever lived through.  It changed me as a person on a level few things can.  Honestly, I cannot think of an element of my life it did not change.  The experience taught me a lot about myself as a person, a lot about my incredible husband, a lot about my closest family and friends.  I took refuge in my faith because I had little else.  I watched both of my existing children mature in a way that was both painful for me and warmed my heart.  

I read somewhere that women who's mothers battled HG have a higher risk of developing it themselves.  This saddens me more than I can express.  My daughter is already an HG survivor and if she chooses to become a mother she may have to face it in a different way.

This means I have to do my part in raising awareness over the next twenty some odd years.
This means we need to find a cure, or at least a reasonable means of treatment.

Now.   

vaccinations and peanuts

As the debate on vaccinations and the tensions over the measles outbreak continues to concern us all, I have noticed a really troubling (and annoying) little meme or phrase that keeps popping up.  It haunts my facebook feed with a nagging and insidious hidden barb that bugs the crap out of me.

Or this one:

And if it isn't a meme or a cute little graphic, it is an attempt at a witty tweet.

No, Kristen-I-adore-you-otherwise-Bell, it is not a "good point" made by @MotherJones.  I respectfully disagree with you there, though, again, I freaking adore you otherwise.

It is a random, unrelated, unfair point.  

It is an apples and oranges argument, one having very very little to do with the other. It is something within allergy circles that I have seen come up recently, parents really upset by this sentiment who sometimes have a hard time articulating WHY it bothers them so badly.  I wasn't sure what about it bugged me so much first, but I knew I hated it immediately.  The first time I saw it, a meme shared by a friend on facebook much like the Wonka one, I groaned out loud.  

I posted this on my personal facebook page when I was still having a hard time articulating my distaste for the "joke" or "vent" and was met with a lot of well meaning and kind responses.

Most people assured me that those memes were not meant to insult allergy families.  Most of my very pro-vaxxing friends wanted to address the importance of inoculations and how children need protection from these illnesses.  When I discussed it verbally with a friend she assured me that as an allergy mom I am just used to being the butt of a joke and so I am taking it personally when it isn't about me, or my kid, or even peanuts.  

But is it?  And if it is not, WTF is the point of bringing it up?

That ^ cartoon paints me and the anti-vaxxing mom with the same brush, literally and figuratively.  That cartoon illustrated precisely what my underlying nagging little fear was when I saw the meme start to regurgitate itself across the internet with increasing frequency. The implication is that we are both irrational and selfishly overseeing our children's perceived (insert finger quotes and eye rolls here) needs with no regard for anyone else. 

I still find it difficult to articulate though, because I know that the people sharing it when I do try to say why I hate the sentiment will reply with "but that isn't the point."

Well it may not be your point, but as in all arguments, if the ONLY way you can dispute something is by bringing up an unrelated something else then are you really proving anything?

This idea is meant to be witty, biting, and direct.  But it is really none of those things at all.  

Does it bother me that they are aligning me with anti-vax parents?  Yes.  Not only because I personally chose to vaccinate my children to the fullest extent I can (more on that in a moment) but also because not vaccinating is a choice.  A CHOICE.  We never got a say in whether or not a peanut, or milk, or parsley could KILL our child.  No one asked me.  No long-debunked research studies, no famous former Playboys turned parental activist ... I never got to sign a waver for this life.  Choosing to not have your child receive the MMR shot or any other shot is a choice, a decision purposely made.  Food allergies are a life sentence handed to you by fate.

Does it bother me that I am put in, let's be blunt here, the same category as fanatical, uber crunchy, kinda "out there" parents because of this argument?  Yes. Not because of the level of granola in my life, but because that category isn't meant to be a flattering one.  Those parents are instantly dismissed on the grounds of being, I hate the pun, nuts.

Does it bother me that in order to make your point you have to drag my kids into this argument, where they have no real place?  Yes.

Many children, mine included, with food allergies cannot receive certain vaccinations because of the way they are produced.  Some involve egg, some actually involve milk contamination, some children with food allergies carry other diagnoses that leave them immuno-compromised and they are not supposed to get those shots because the vaccination could actually kill them.  My kids get every shot they can have, and I hold my breath in fear for each one just in case because the threat of those shots is not an imaginary one.   

As a food allergy parent we get used to having to field certain questions and sometimes certain annoyances from other people.  It is really hard sometimes to not get really defensive when people are POed about not sending a PB&J to school because it is inconvenient for them while it could make my child suffer tremendously within seconds just to be in the same room.  When I start to think about how defensive, and admittedly, angry it can make me to hear parents complain about "inconvenience" and "annoyance" when these precautions can prevent my kid from dying ... I do begin to see the point the authors of these memes, status messages, tweets and what not are trying to make.  This could kill innocent children.  How can you not get behind something that prevents that?

While I do get it, I really wish people would stop bringing peanuts into the vaccination argument.  Mainly because if you chose to not vaccinate, that is your choice and this is a battle you chose.  It ain't my battle, I have enough of them and want no part in this one. Your on your own here.

The bottom line, either way at the core of any of these points are innocent children.  They are not meant to be banners in your war -- stop using them as such.  Whether your point is "if I can be forced to not send peanuts you should be forced to vaccinate" or "you are just as big of a pain in my ass as those kids are" ... please, stop using MY innocent children to further your point in this debate.  

get the memo, Baby!

Not like consistency has ever really been MY thing, but I have been bad about maintaining any kind of schedule with posting.  Its hardly surprising, but it does annoy me.  It ain't looking like it is going to get any better though.

A week ago I got an infection in my PICC line.  It was pulled as soon as my white cell count confirmed infection.  It has been rough without it in some ways, but I have honestly been proud of how stable I have managed to keep myself and things were looking okay.

Then I had another doctor's appointment yesterday.  Baby Pinkie Pie went from measuring beautifully and hitting all the milestones she needs to, to being labeled an IUGR baby (intrauterine growth restricted).  Fancy acronym for "small, too small" baby basically.  I also learned that BPP stands for biophysical profile because I will be having one of those a week i
n addition to NSTs (non-stress tests, but I at least knew that acronym).  So I am now at the doctor twice a week and one failed test or lack of enough improvement from one week to the next means baby time.

I handled the news great in office.  It was about 3 AM that I suddenly realized how much I have to do and how much I can worry about.  Needless to say it was not a restful night.

While I am unable to DO a whole lot because I am sick still and weak, I am very much in planning and working mode.  Nesting times a bajillion yo.

The good news is that we are 33 weeks and my next BPP (which is the test I worry about "failing" more than the NST at present) will be at 34 weeks.  That is a good marker to hit.  Every week is a GOOD thing at this point.  I have been saying that I just want to get to March and that is still a great goal, but we will just have to take it day by day at this point.  Irony being what it is the little stinker could still make it to her due date and just give us a stressful last 7 weeks.  Ideally she will.  Sheesh.

Since I can do nothing for her technically, I am focusing on making the hospital bag, overnight bags for the kids, and getting a car seat picked out so we have the bare minimum stuff covered.  Everything else will work out and be fine, but I kinda have to figure that stuff out and I am lucky to know that with advanced warning.

Not sure how well I will post, but I do know that I *like* getting to write when I am worried or stressed.  So, hopefully I will get to do that a little better because it will help my sanity.  Even doing all the tedious explanatory PICC posts will help me, and I find that I share my posts in my support group more than I anticipated so I want those done in case they can help put another mama's mind at ease.  Pregnancy, parenthood, is unpredictable and overwhelming enough on its own.  The moment you add complications it just makes it even scarier and while it is cliche, knowledge IS power.

So fingers crossed I have lots of regular posts about baby still cooking and growing in addition to all the other stuff I have wanted to post and just haven't gotten to yet!

Pick-me-up

As of my last post, I was pretty much a total downer.  Sorry 'bout that, but to be honest this has been a roller coaster.  Greater than any other medical roller coaster *I* have been on personally and it would really be dishonest of me to only post the good stuff.  Some days I am like "I got this, I can do it!" and other days I want to mope and feel very sorry for myself.  I believe I am entitled to have both days.

Today, though, is a good day.  So I figured a little writing and catching up was in order.

Since I left off I have had to have my PICC replaced once due to it clotting off somehow.  I will post about that independently because I know for me, the removal process and what could go "wrong" with a PICC consumed a lot of my thoughts especially in the beginning.  It is better now, though I still worry and have some anxiety about something going wrong again.  Not that I logically have need to worry, just when you go through stuff sometimes it makes you worry.

Anyway, I have wanted to just throw something out there in case my last post left anyone upset because I was pretty down.  I was only a few hours out from getting my PICC and it is overwhelming in a lot of ways.  It represented a huge change, and mentally I felt very much like a failure not only because of all the things I couldn't do (some of which now I can) but also because the PICC was such a "last resort" kind of thing that getting there felt like a big step in the wrong direction.

Perspective is everything, however.  While there are still bad days, and while I will never say that I looooooove having a PICC line, I will say that I 100% do NOT regret getting this sucker.  It has been the right choice for me and for my baby.

I have to be more transparent, with myself even, on the bad days.  I have to give myself permission to vent, because I find that I am constantly trying to reprimand myself for feeling crummy about the way things are now.  It is okay to feel bleh, angry, depressed ... that is all normal.  Even if it is all worth it in the end, it sucks right now.  I can't -- and won't -- give into it, but it isn't being fair to me or fairly representing HG to only post my sarcastic spin on the misery or advice on how not to be a total buttface to someone with HG.  

I am working on a PICC series -- this one will include having it placed, removed, and the day-
to-day stuff.  Since some days are better than others I am not sure how long it will take for me to actually manufacture those posts, but I am working on it.  I am also working on some other posts that may feel a little diary entry-ish to a reader but I have a lot of time to think lately and I know eventually I will want to look back on my thoughts during this time.  Blogging about it is as good a place as any to slap those musings down for posterity.

So since it is a good day health-wise, I am here writing and will hopefully crank out a couple posts or at least get started.  Today I am feeling good enough that being positive and hopeful is possible, so I am focusing on that and will keep on moving forward either way!