Friday, June 10, 2016

Cholestasis: the emotional rollercoaster

In honor of ICP Awareness Day.

Even normal pregnancies are fraught with many emotions. There's the emotions surrounding the transition: excitement and nervousness. Then there are the emotions about going through pregnancy itself: Ee! I'm going to have a baby! Oh my gosh, you mean I have to go through nine months of THIS? This random thing is making me cry. The baby is kicking! It's so beautiful! Aggh, my life is over!

You get the idea.

When you find out that your pregnancy is high risk is another matter altogether. 

I know for other high risk moms that there is a lot of anxiety and stress surrounding their pregnancies. Extra appointments; possibly lots of medication; worrying about the baby; worrying about their babies needing extra help when they come out; worrying about long-term ramifications to their babies and possibly themselves; etc.

Now, I speak only of my own experience having a rare pregnancy-related disease here, but these are some of the emotions I experienced, most especially during my second pregnancy. 

Relief

Relief? Say what?

I remember both times feeling a sense of relief when I was officially diagnosed. It was more of a "thank heavens, I'm not crazy after all!"

There was also the relief that I was being taken seriously and I would be getting the treatment and monitoring my baby and I needed. I was also relieved that there was a time limit to my suffering, since I wouldn't be allowed to go past 37 weeks.

Stress/Anxiety/Worry

The drugs are going to cost HOW much? Agh! 

How am I supposed to take care of my three-year-old when I'm so tired and itchy?

What are people going to think seeing all these scratches and bruises on my body? 

Crap, I have to find someone else to watch Kate so I can go to ANOTHER NST!

I am SO TIRED

How many more weeks? I can't do this anymore. 

I am so sick of explaining a million times why I have to be induced early. 

This low fat diet so I don't have another gallbladder attack SUCKS.

These are just a few of the thoughts that stressed me out during my second pregnancy.

Did I mention that stress makes the itching worse? Oh yes.

Frustration/Anger

I was mostly frustrated with all the ignorant comments and questions I got as my pregnancy wore on.

You're being induced at 37 weeks? WHY?! (my liver wants to eat my baby)

What's cholestasis? (my liver is not working properly and is becoming homicidal towards my baby)

How's your blood pressure? (MY BLOOD PRESSURE IS FINE!)

This is your last baby, isn't it? (Let me have this one first, mmkay?)

Oh, it's better to let baby cook longer! (not if your body is trying to kill baby)

Are you worried about NICU time? (I'll take a little NICU time over possibly losing my baby)

Aren't you supposed to be on bedrest? (my medical team hasn't told me I need to)

Do a liver cleanse! (number 1, cleanses are not safe during pregnancy or anytime really. Number 2, cleanses are a load of bunk)

Did you know that using hormonal birth control causes it? (genetics caused mine. Now leave me alone)

You look terrible! (Why thank you, have you heard of thinking before speaking?)

Stop scratching! (Try not breathing--not so easy, is it?)

You get the idea.

I have had people tell me (after expressing my frustration with these comments) that most people don't know about cholestasis, so I should just get used to these comments.

When an expecting mother says, "I have preeclampsia", most people know that it's serious and will hopefully offer sympathy. I want it to get to the point when an expecting mother says, "I have cholestasis" that people will say, "Oh, I've heard the itching is just awful!" or something along those lines.

As it is, when someone tells me that they have heard of cholestasis, I want to cry tears of joy and kiss them. I just tell them, "Thank you for not making me explain what it is! It's so refreshing!"

I confess that I really got annoyed when other pregnant moms whined about having normal pregnancies. Still do, actually. I know I shouldn't. I just wish I could have a normal pregnancy.

Isolation

I felt so completely alone when I was going through it. Most people were kind to me, but no one (except my mother, who had ICP herself) really understood just how miserable I was. My support network that would have helped me out was down during my last trimester: my mother-in-law was caring for my father-in-law in his final days; my good friend who would have happily "kidnapped" Kate was sick (unknowingly pregnant, long story); and most of my ward was also pregnant.

Oh, and I am really really bad at asking for help. No, really, I am. I just don't ask for help. I really don't know why this is.

I should mention that my husband was incredibly supportive, even though it was hard for him to see me go through something he couldn't "save" me from.

It got to a point where I only left the house if I absolutely had to. I became self conscious of my scab and bruise-covered limbs--I was seriously afraid people would think my husband was beating me or something. Sleep deprivation makes you think crazy things. Oh yeah, I was also too tired to leave the house unless I had a very good reason. And it was hot outside, and the heat made itching worse.

Depression

I already have depression, but sleep deprivation and feeling like my body was turning against me only made it worse. There were days I wondered just how I was going to make it to 37 weeks without losing my mind.

Actually, I did pretty much lose my mind. I wanted to jump out of my skin and run away.



Next up, I will talk about the emotions I experience after having two itchy pregnancies. Stay tuned.







Wednesday, June 8, 2016

Weekly Check-in: Coming out of the fog?

Physically: Zzzzzzzz....Livia has not been sleeping well. At all. We don't know why. Argh. But even when she does sleep well enough, I have insomnia. Grr. 

Emotionally: Feeling slightly better...maybe? I haven't felt quite as foggy in the head despite my sleep deprivation. Maybe it's adrenaline. 

Spiritually: Not doing so hot. I've been feeling empty and trying to fill the emptiness with really ridiculous things--maybe spending a little more than I should, too much internet time, trying to escape reality. I really need to do more meaningful things with what little free time I have. 

Goals: take things a little bit at a time in all areas in my life. Stop with the all or nothing thinking.

Wednesday, June 1, 2016

ICP Warrior

I am an ICP Warrior. Two times over.

What does that mean? I had Intrahepatic Cholestasis of Pregnancy (or simply, cholestasis) twice. ICP is a rare liver disorder (1 in 1000 pregnancies in the United States) where bile production is slowed down or stopped, causing bile salts to develop in the bloodstream. One of the most common symptoms of ICP is intense itching.

Intense doesn't begin to describe just how miserable the itching is, at least for me.

Imagine you have bug bites all over your body, and I mean every square inch. The itchiest kind. Then turn your skin inside out. That should give you a small idea of how bad it was.

No, this itch cannot be helped with Benadryl (though it can help with sleeping for some). No, lotion will not help because it is not dry skin. Unless that lotion has menthol and/or lidocaine in it, then it will give some temporary relief. My favorite remedy was the Aloe Vera sunburn relief gel that has lidocaine and menthol in it.

And no, I could not just stop scratching. I couldn't help it! Okay, I could stop long enough to slap the itching spots and stomp my bare feet on the cold kitchen floor, or smack my hands on the dashboard in my car.

The itching was much worse at night, so I didn't sleep. With Kate, it was really only about two weeks (which was bad enough). With Livia...I had nine weeks of itching. Nine sleepless, miserable weeks. I was given Atarax to help me sleep, but it didn't help. It got me to sleep, but when I woke up in the middle of the night, the itching just got worse, AND I was drowsy to boot.

To give you an idea of just how bad the itching was, I will share some pictures of my battle wounds. Warning: if you're squeamish, you might not want to look.












I also had a lot of bruises because cholestasis can interfere with Vitamin K absorption.

I was induced at 37 weeks with both Kate and Livia. Other than a bit of jaundice (because of early delivery), Kate had no complications. Livia ended up spending 48 hours in the NICU because of breathing issues--her lungs hadn't been QUITE ready when she was born. But 48 hours in the NICU was better than possibly losing her if we had waited longer to induce.

Kate on the day she was born
Livia being monitored in the Nursery.
Both are completely happy and healthy :)

But here is the scary part:

Everything I went through was with proper treatment. I never had to fight my healthcare providers for diagnosis or proper treatment. Early induction was a given--I didn't have to fight for that either.

There are many women who have to fight their providers about SOMETHING related to cholestasis, whether it be diagnosis, treatment, and sometimes even early induction. Or else their doctors tell them that itching is normal and they are crazy (this happened to a college friend of mine who I helped get diagnosed).

I am grateful every day that I never had to fight for diagnosis, treatment, or induction. I even remember telling the midwife who ordered my tests with Livia about some providers not taking this seriously, and she was shocked. "We take cholestasis VERY seriously at this practice!" she exclaimed.

"Laura, you talk about this too much."

Yes, I do talk about this a lot. The reason I am so passionate about spreading awareness is because there are still healthcare providers who are ignorant about this--saying nothing of the general public. People have a general idea of what preeclampsia and gestational diabetes are, but when you say you have intense itching...they sometimes start asking, "Is it your blood pressure?" or "Do you have to go on bed rest?"

Another reason I am passionate about this is because my particular case of cholestasis is the result of genetics. I am a third generation Itchy Mom, but the first in my family to be diagnosed and treated. We got the dominant form of the gene, which means I have passed this down to Kate and Livia. It is my hope and prayer that by the time they reach childbearing age, more will be known about cholestasis and even more can be done for it.


They are worth every last itch
June is ICP Awareness Month. This year, our theme is ICP Warriors. We are warriors because battled cholestasis and somehow survived. Many are warriors because they fought for proper diagnosis and treatment. We are all warriors because we are fighting to save more babies.

For more information, check out icpcare.org

Sunday, May 29, 2016

Checking in

I've been thinking, and I am going to start doing weekly check-ins about how I'm feeling physically, emotionally, and spiritually. You know, be accountable of sorts...and so people don't worry too much about me (are people worrying about me? Shut up anxiety)

Physically: Blah. Bedtime has been a battle at our house recently with both kids, ergo, zzzzzzz.....or I wish I could. Of course, being tired is par for the course with parenthood I guess. 

Oh, and I'm getting my gallbladder out in July. I had a few attacks recently, and I promised a few very dear people (like Stephan) that if it happened again, I'd make arrangements to get it out. It happened again, and now my gallbladder has an eviction date.

Getting my gallbladder out before I turn 30...that was totally one of my life goals! 

So, I've had a conflicted relationship with food recently. 

Why am I waiting until July for my surgery? So I can get everything in order for the kids. I'm not so much worried about surgery as I am hijacking my children's lives. I am such a mom.

And no, this will not prevent ICP in future pregnancies, so don't even ask.

Emotionally: Uggghhhhhhh

I had a therapy appointment this week. Processing is both challenging, but freeing once the session is over. We're seeing progress, but it's still going to be a long road. 

But I've been really struggling with my anxiety especially these last few weeks. Like, really. I've been fighting the urge to be convinced that everyone hates me and is trying to sabotage me. Of course, whenever I say this out loud, people try to be nice to me, but then I think they're only being nice to me out of pity. So...yeah, I pretty much think people either hate me or pity me.

Well, except for a few select people. Stephan is one of these few people. 

Yes, my head is a pretty screwy place to be in right now. *insert swear words*

I've also been stressed out about things. Planning ICP Care/Itchy Moms Meetup (I am so bad at planning events it's not even funny). Need to contact landlord about some household repairs, but STUPID ANXIETY makes me think that I am horribly inconveniencing her even though this is her job...etc. etc.

Spiritually: Needs improvement

We have 8:30 church currently and I won't lie, I hate it. Sure, it's nice to be out of church before noon and have the rest of the day to enjoy...but it is so hard getting to church on time with two young kids, especially if Livia has had a rough night. She seems to pick Saturday nights for her rough nights for some weird reason. We keep getting to church after the Sacrament, which is frustrating because one of the main points of going to church is partaking of the Sacrament.

I try to remember that the Lord knows the desires of our hearts and blesses us. 

But dang it, I just want to get to church on time! #mormonguilt

I also try to remember that currently, the main point of taking kids to church is to get them in the habit so they don't totally hate it later on. Hopefully.

Someday my kids will know what it's like to actually sit in the chapel for Sacrament meeting...

I haven't been good about doing spiritual daily things--I really got to do that. I haven't been reading my scriptures very faithfully because I've gotten into the bad habit of thinking, "I have read these soooo many times that it's so BORING now." Yeah, I probably need to rethink my scripture reading habits. Sigh...


Goals: find some way to make scripture study more meaningful and get out of the house more


Friday, May 6, 2016

Dear Kristen Bell, can we be friends?

You just came out with your own battle with depression and anxiety, and you have the crippling fear of people not liking you.

I thought I was the only one!

True, you say that you compensate by being bubbly and fun. I compensate by acting like I don't give a damn and proceed to subconsciously sabotage friendships so I can have a reason to say nobody likes me! Yes, I am totally screwed up.

Okay, maybe we can't be friends then. Or maybe you can teach me to be bubbly.

Or at the very least, my four-year-old and I loved you in Frozen and our daughters can be friends and play together!

Maybe I'll watch you in "Bad Moms" this summer.

Anyway, thanks for being open about your own struggles with mental illness. I already thought you were awesome for being pro-vax and just being cute all around, but opening up about your own battle just makes you all the more real. Let's have a playdate sometime, okay girl? Okay!

Signed,

Laura

Friday, April 22, 2016

Show me the miracle!

I had some very kind messages after my last post, and I thank all of you for them. They mean a great deal.

By some miracle, I am getting regular appointments! True, I am still on the cancellation list, but enough people are "graduating" (in the secretary's word) that stuff is opening up. Childcare has been working out so far as well--the last few appointments, my mom has been up visiting and she has been able to help with my girlies. I have had offers from friends to help as well, which again, means a lot to me.

I seriously wasn't expecting things to work out like this.

My therapist and I have started processing (DNMS therapy) and the few sessions we've had so far are already making a difference and have opened my eyes to some things. I'm even noticing a difference in my girls, especially Kate. I've told Kate that I'm going to a special doctor to help my mind feel better so I can be a better mommy to her and Livia.

Things aren't perfect--I have a ways to go, but I am seeing the tender mercies rolling in and I am very grateful for them.

So...thanks everyone :)

Thursday, April 14, 2016

Critical

I have finally gone back to therapy, after close to two years.

My therapist had been wondering about me. That's why I like her--I'm not just a number. She never forgot me!

She did a follow-up anxiety assessment. When I started seeing her a few years ago, my anxiety. was classified as "severe".

At this appointment, my level was critical.

CRITICAL

That's worse than severe.

I had no idea that my anxiety could get any worse than severe.  

Of course, it's not like the last two years have been stressful. I mean, other than a miscarriage, my husband getting laid off, going through unemployment, husband adjusting to new job, me having a difficult pregnancy, husband's father dying, and then having a new baby...

Yeah, pretty sure most people don't have that much craziness happen in a decade. What can I say, we seem to enjoy doing all the stressful things at once in this family. I don't know why, but it is what it is.

It's one of the reasons why I haven't been posting much, other than you know, children. I have been so overwhelmed and unable to focus, not to mention worrying about people disapproving of me posting about my mental illness. Oh yeah, that's another part of the anxiety that has been showing up: basically feeling like everyone secretly hates me or just doesn't care about me...except for a few handful of people.

One of my best friends, upon telling her this, remarked, "I can't imagine how that must feel!"

Yeah, it's hard for me to understand as well. 

And I hate feeling like this. 

I told my mom about this, and she said, "It's a miracle you didn't have a complete breakdown!"

Thank God I never had one.

But oh, I'm pretty sure I got close a few times.

I finally reached my breaking point when one night, I had these horrible thoughts and visions going through my head. I couldn't sleep. When I say horrible, I mean it. It was scary. I'd rather not go into details. When I couldn't sleep, I went to the computer and just typed out the thoughts I was having, just to get them out. After I finished, I knelt down in prayer.

Heavenly Father, I need help. I need to get back to therapy, but my therapist has a long waiting list and I don't have much childcare. If it be thy will, let me get an appointment within the next month and help me to get reliable childcare for my kids. 

I called two days later, and as luck would have it, my therapist had an opening (thanks to someone canceling) in the next few days. My husband was able to take the morning off to take care of the girls for me.

I'm still on the cancellation list, but I'll have regular appointments in the next few months. That should tell you how amazing my therapist is. Childcare is still dicey. My mother-in-law works long hours currently and the friend I trust my kids' lives with just had a baby. Plus, there's my crippling fear of inconveniencing people. Yes, I am fully aware of just how messed up I am.

After my appointment, I felt more hope than I had felt in a long time. I could finally say, "I'm going to be okay."

I am going to be okay.

I just have to take it one day at a time.

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