Postpartum

An unexpected result of having surgery has been pretty intense emotional swings and a growing sense of social anxiety.  I can't even go to the grocery store without getting all tense and freaked out, then I come home to nap it off.

I was quite confused by the new me, until my friend Sabrina made a stellar point:

"I had postpartum after two of my children," she said. "It sounds like postpartum."  Which makes sense when you think about endometriosis.  It is, essentially, a million little estrogen producers littered throughout your body.  Take those estrogen producers away (i.e. have them surgically removed) and overnight your hormone levels are different.

Certainly my estrogen levels are healthier now than previously, but it's taking my body a minute to get used to it.

Grace to Heal

Yesterday was the 3 week anniversary of my surgery, and I'm still healing.  This is hard for me.  A voice in my head tells me I should be healed already, that surgery was all I needed to be okay, that wincing when pain hits makes me a big baby.

Lies.  Damn lies. (Is that a quote, btw?  In my head it is.)

A friend of mine who has had 14 surgeries (poor girl) reminded me today that my body is healing.  I need to be kind to myself.  I had major abdominal surgery!  Of course my colon is still healing from where all the scar tissue used to be!  Of course I still have pain where my appendix used to be!  Her words were 'a cup of cold water in the night' to my brain and I feel permission to continue my convalescence, rather than pushing myself to start work again or pick my social life back up.  I do not need to go to church on Sunday, I'm still healing.  I do not need to go visit my ailing friend, I'm still healing.  I do not need to go meet my other friend's new baby, I'm still healing.

It is totally normal to be 3 weeks in and still recovering.

Firsts

Today I wore jeans (real pants!) and drove. =)

As silly as it sounds,

my surgical pain astounds me.
Ridiculous, considering my pain levels are miraculously so low that
when sitting still, I feel nothing.
Even walking, sometimes fine.
But if I move wrong and am reminded that my body is still in pain
I think,
"What??"
Like,
somehow,
magically,
only a week after major abdominal surgery,
I should be healed.

I am a massive lump

sitting on my rump
and being a big baby about recovery.
This pain is nothing compared to what I have had,
but it's still annoying not to be able to
sleep on my stomach or
pick anything up or
do my own laundry or
drive anywhere
while my insides heal.
I do not rest easy. It is a discipline. I must learn.

The best part about being sick

is the flowers.

Quick Update

I am alive.

:)

I don't know the full details of the surgery, as I was super drugged for a day and haven't met personally with the doctor yet.  He gave the information to my mom, but since she hasn't been reading up on and obsessing over endometriosis surgery for the past 5 months she doesn't really remember what he said.  What I do know is that:

- They took my appendix.  This was planned, because at the pre-op he said they often run into this problem with women with endo where their appendix bursts and the woman just thinks it's the endo/healing from surgery.  Scary!  So they took mine, which was good because it was "huge" and snaking around surrounding organs.  I was probably very near a burst appendix and, knowing me and my family, would have just tried to suck it up and live with the pain.  It coulda killed me.
- There was a lot of endo on my colon, as I already suspected.  I think he got it.  Mom can't remember, she just remembers he said there was a lot of "scar tissue" (endo) there.  But he's a good doc and obsessed with getting it all so I'm sure it's gone.
- One of my ovaries was swamped in endo and now it is clean and fresh.  Ready to drop eggs and make babies.  Any takers?

Aside from that, my incision points barely hurt.  The most painful thing has been the leftover CO2 (they blow your belly up) that hasn't fully worked itself out yet.  I keep giving my family members the "privilege" of massaging it out of my shoulders, where it likes to rest.  They've been more than affable about it.  Alright, that's it for now.  I'm a bit more coherent today than I have been, but my attention span at the mo is like that of a 5-year-old, so I'll post again after my appointment on Monday when I have more information.

Do you know the way to San Jose?

Here we go!  See you on the other side.

I'm in NorCal now, at my Aunt Carol's house, my happy place.  My nervousness has returned regarding the actual procedure, so please pray for me.  I know I'm not the first person in the world to have surgery, and many of you reading this have gone under the knife yourselves, so sometimes it feels a bit silly to be so afraid. But did you know I've had two aunts die from surgery?  One during; the other, a day later. I think more than anything this continues to be the main source of my fear.  Well that and the thought of not being in control.  I mean, just lying there, in a controlled sleep, while strangers cut into your naked body.  It's just a weird thing, that's all.

There will be scars.

One through my belly button,
two on the sides of my belly.
Little purple-red dots.
One for the camera,
two for the tools.
This is laparoscopy.

Drastic Changes

There is fear in recovery.

It took me a long time to admit to myself how sick I actually was.  I tend to think that I can do anything I try to do, and that I will be the best ever (A+++!), so it took the endometriosis getting really bad for me to acknowledge that I couldn't.

Couldn't keep moving forward.
Couldn't support myself.
Couldn't heal myself.

I finally did acknowledge my need (thank you, E.R. trip of 2010), but it still took months of living with my parents and working for them - even borrowing their vehicles since I sold mine in 2010 - before I internally defined myself as dependent.

I'm glad it was hard for me to embrace dependency, because dependency can be dangerous.  Just as there are both healthy and unhealthy forms of independence, there are healthy and unhealthy forms of dependence.  Healthy dependence says, "I need other people.  I can't function autonomously.  I am just one piece of a much larger whole and I need to learn to work in conjunction with all the other pieces."  Unhealthy dependence says, "I'm going to let everyone else do all the work so I never have to face my fears or grow as a human being or contribute my share."

That second form is such a trap (and on a totally polarizing political note, is where welfare gets sticky for some people) because life is scary sometimes.  It's scary to be an adult and have to stand on your own.  It's scary to provide for yourself - to be the person in the job interview selling your skills and praying they're good enough for the employer.  No one can prove yourself but you.  Sink or swim, success or failure, no one can do it for you but you.  So when you've been sick and gotten used to others providing for you - to never having to really be good at anything because the real adults around you were gonna take care of it no matter what - then health...freedom...independence...is scary.

And it's rushing upon me 860 miles per hour.

When surgery is past and I am recovered I will have nothing but myself standing between me and thriving.  I am ready...like a woman is ready to give labor...like a soldier is ready to go into combat...like a virgin is ready to get married.

Two Words: Bowel Prep

On Thursday of last week I was going to start a juice fast.  I have to go all liquid the day before surgery and can't eat certain foods (like beans or red meat) for a few days leading up to it, so I thought, why not?  I have to do this nasty bowel prep the day before surgery anyway (12oz Magnesium Citrate, 4 laxatives, 1 suppository, 2 enemas), so why not get my colon ready just a few days sooner?  Make the bowel prep that much less painful?  Explosive diarrhea isn't so bad if there's nothing to explode.

But I'm a stress eater.  Not a sad eater - if you break up with me I'll just lose 10lbs and be hotter than ever .  An I-just-quit-my-job-so-I-could-have-surgery-and-go-back-to-school-sweet-Jesus-where-am-I-gonna-get-an-income-in-two-months-? eater.  Which is why I just finished an Udi's Gluten-free Pizza and two So Delicious Coconut Bliss Ice Cream Bars (seriously...like eating a giant frozen Almond Joy...)

Wouldn't it have been great if I had stuck to my juice fast on Thursday?  Pressed in to the Lord and drawn comfort from Him?  Mm?  Yeah...well, as the French say, "Tant pis!"

So...TOMORROW!  TOMORROW!  I love ya, tomorrow... tomorrow I'll start my juice fast.

Time and Money

I was supposed to work this entire week but Dad doesn't need me so I am at home instead. The extra time to prepare for surgery is nice as I get my room in order (I moved all the furniture around and have made it as recovery-friendly as I can), but the fundraiser made around $2,000 less than my anticipated need and my own financial situation isn't strong because of being sick for so long, so missing my last week of work is a stretch.

However, on top of not working this week I also had to pay Dr. Cook the full amount for his cut of the surgery (paying the hospital et al comes post-surgery). The total amount? Two thousand dollars less than the paperwork said I'd be paying. Two thousand less than I expected to pay when Bekah and I came up with the fundraiser amount.

Is surgery the right decision? Well I would say Someone keeps opening doors in this direction...

Thank You

Here's the thank you note Bekah is posting through Give Forward.  Some of you gave anonymously, so I'm also posting it here since I can't thank you personally.  You guys are amazing!

Dear friends,

 

I'm sorry I didn't get this thank you out sooner, but how do you thank people for something so important?  I am really blessed by all of you - though the Give Foward website doesn't reflect it, some people also gave to me personally, and with all the gifts combined you guys raised over $8,000 for me!  That's monumental, and I am extremely grateful.  If you guys hadn't pulled together and been so gracious, I would've had to wait at least one more year before I could afford surgery.  So thank you.  Thanks for caring about me.  Thanks for helping me in my greatest hour of need.  This experience of opening up about the disease and accepting help from my community has grown me in big ways and helped me understand how we ought to care for and interact with one another. I am really overwhelmed.  Really and truly.  I mean, $8000!  That's a lot of love. :)

 

Bekah will continue to post updates on the Give Forward website and on Facebook if you would like to hear how surgery goes.  After all, you paid for it!  Oh, and I also found out they record the whole thing and I get a copy, so in some ways you could see it as having funded a full-length motion picture.  Movie night, anyone? ;)

 

Thank you again, so very much.  From the bottom of my heart, thank you.

 

Love,

Rachel

Honestly?

The anonymous donors drive me crazy.  Like, I get it.  And I myself love that feeling you get from giving anonymously, like you're carrying a marvelous secret.  But how I would love to be in on the secret! :0)

One more day for the fundraiser!

Due to logistics, Bekah extended the fundraiser one more day.  It ends tomorrow at midnight, so if you still want to give you can!  It's pretty amazing how far we've come.  God is good!  And so are my friends and family.  Thank you!

Yard sale totals

Sorry I didn't post this yesterday.  Looooooooooong day.  We made about $350 at the yard sale.  It's less than I've ever made at one of these things but I'm not upset about it. A few weeks ago I would have been, but God really is using this process to refine me.  I am content and I am living in trust.

And the best part is that some of my friends donated really awesome clothes that didn't sell, so my wardrobe has expanded by two weeks. :)

Phlebotomize This

Okay, I hate having my blood drawn.  I don't mind needles, but I hate blood.  Bleh. *shudder* So I'm getting my blood drawn this week and I'm waiting in the waiting room and I keep seeing this phlebotomist come out to the desk area to do paperwork and such.  And he's creepy and he's the leering type and I just pray, "Please Lord, please!  Don't give me that guy!"

And God took it a step further when He answered my prayer (with an "Okay beloved Rachel, I won't"): He gave me a phlebotomist who had such bad endometriosis at one point in her life that she had to quit her job.  Then she had surgery and now she is better.

God was kind to give me that.

One

day til I get my blood drawn,
week til my fundraiser ends,
month til I have surgery.

And one bad period left to get through.  Here's hoping it truly is the last one!

Calling it Out: Shame, Part I

It's been exactly a week since my sister started my surgery fundraiser.  That small action has called up a perfect Pandora's box of stuff for me to deal with.  I want to talk about it here for two reasons: 1) Naming an issue helps you move past it. 2) I said I wanted to help raise awareness about this disease.  I meant it, and chronicling my experiences might help bring awareness not just of the disease itself, but of the emotional side to it.

I have a lot of shame over this illness.  I don't think I realized how much until everyone I knew suddenly knew that I had it.  I've been thinking a lot about the sources of that shame and I think it stems from:

1. Not being believed for the longest time ("You're just being dramatic" "Everyone has pain sometimes." "Just drink more water." "Is something else going on in your life?  Should I prescribe Zanax?")
2. Not being healed yet, despite many efforts, many doctors, many dollars spent, and way too many medications and supplements.
3. The intimate nature of the disease.  This has been a huge source of embarrassment for me ever since I started having symptoms.  Do I want you to know I missed that church event because I was in pain?  No, because now you know that I was on my period during said church event, cause my period is the source of my pain.
4. Missing out.  A friend of mine once described me as an IOU.  Ouch. I should just muscle through this, right?  Make myself go to things even though I'm in pain?  I also look flaky because, besides missing events I say I'll attend, I now have a hard time committing to anything just in case that day is one of the days.
5. Being weak. I have five sisters.  I'm the only one with this condition.  I'm also the only one who's ever needed surgery for an illness rather than an accident. I.don't.like.this.

Those are the main sources of my shame, and here are the truths I've been trying to tell myself to combat that shame (you could be praying these things for me too - and speak them over other women in your life who have similar diseases!):

1. On not being believed: I don't need other people's approval.  I know this pain is real.  And I know that many other women have had similar experiences to mine in not being believed at all, and not even being diagnosed until they were 10 or 12 years into the disease. I am not alone in this.  One story I remind myself of is my friend's mother-in-law, Sara.  She's from an older generation where this disease really wasn't understood or tolerated.  Doctor's not only disbelieved her, they put her on anti-psychotics.  She became an alcoholic to deal with it all (the physical pain of endo and emotional pain of being thought of as insane). Finally in her 40s, a doctor knew what was going on, told her about it, and performed surgery for her.  After the surgery he gave her photos of her diseased organs and wrote in Sharpie all across the top, "Sara's NOT crazy!"  (And if that story doesn't make you cry, I don't know what will.)
2. On not being healed yet: God has a plan.  The outpouring of love I've had from friends, family, and perfect strangers since deciding to have surgery has been so healing to my heart.  It's a long story, but the love of others is healing me from several years of heart-breaking events.  If I didn't need surgery, I would never have experienced this outpouring.  God is good.
3. On the intimate nature of the disease: Women have periods and everybody poops.  GET OVER IT.
4. On missing out: I may have looked flaky all these years, but I'm not a flaky person. I am incredibly committed to everything I do.  In fact, I had to quit college on two separate occasions because of health and finances (which go hand-in-hand) and both times went back to finish, completing my B.A. in linguistics in 2010 at the age of 28.  
5. On being weak: We are all weak, we're all just pretending not to be.  We are all mortal.  We are all needy.  It is good to have a physical reminder that turns me to the Lord.  Not everyone has that blessing!

Alright, lunch is over and I have to get back to work.  Later this week I'll post again about shame in asking for help.