There Are Days

Ten years ago (well, nine years and eleven and a half months), I graduated from high school.  I remember sitting in the second row of chairs, surrounded by people I'd spent most of my life knowing.  I remember looking around me and seeing how easy they had it.  How simple and enjoyable and effortless their lives were.  How beautiful they were.  How little they struggled and how seldom they had to fight.  I stared briefly at every face.

And I remember them.

But the last ten years have taught me something.  They didn't have it easy.  Their lives weren't necessarily any simpler than mine.  They didn't have a unequal share of happiness.  And they fought.  They grew up with one parent, they were abused, they had eating disorders and were addicted to drugs and self harm.  But they fought.  And because they fought, they got to keep going.  They got to build lives and families and careers.  They got to develop strength and faith and wisdom. 

I see those things reflected in them now.

And I see them reflected in me now.  I'm thankful.  I'm thankful for the lessons and for the joy and for the beauty and for the relationships I've had since that day.  Sometimes, I get overwhelmed by the negatives though.  On mother's day, I let that happen.  It was an empty, heavy day.  I found my thoughts constantly focusing on one thing:  my Gramma, who was the closest thing I had to a mother growing up, is in heaven.  My babies are there too, and I've never met them.  And my mom?  There's an ocean of time and emotional distance between us.  I miss her, always.  She's sick; each night when I am trying to fall asleep, I inevitably find myself thinking about the fact that I don't know if I'll ever see her again.

I let myself focus on that, and it pulled me down. 

This week has felt like swimming through quick sand.  My physical energy is depleted.  Emotionally I've been on edge.  Mentally, my thoughts are jumpy and disconnected.  And each day has gotten just a little harder.

Those things have combined with the reappearance of pain and other symptoms from endometriosis to create days like today.  Days when I'm just... unwell.  Unwell enough to lack the strength even to sit upright.  Unwell enough that I can't focus to follow the plot in the book I'm trying to read.  Unwell enough that my body temperature is up and my blood pressure is down.  Unwell enough that lab work is coming back abnormal.

There are days like that in every one's life, as far as I can tell. 

And as far as I can tell, the only thing I can really do about it, is to rest.  So that is what I am doing.  I am resting.  I want to be with people, to do things, to "be productive."  But there are days when that seems to be too much to ask.

There are certain truths that keep rolling through my head and heart though.

Cast all your cares on Him, for He cares about you.

Come to Me all who are heavy laden, and I will give you rest.  For my yoke is easy and my burden is light.

He leads me beside still waters.  He restores my soul.

Fear not.

Fully God, fully man.  He has done it all, lived through it all, faced it all.  Perfectly.  I don't have to be perfect, because He already was and still is.  And that is why I can have faith and hope.

Even though there are days...

Unrelated.

So, this is unrelated to stuff I usually post about.

I made a choice months ago, that if a particular opportunity fell through... I was all done fighting for it. 

It fell through.

It isn't God's will or plan.  It isn't best.  It isn't something that time will fix.

And it isn't something that can be ignored for a while and then readdressed.

This was the last chance.

And now it's gone. 

I am numb, partly.  And torn to shreds, partly.

So if you would be willing to pray for me... that would be good.  Part of me says "No, don't give up."  But part of me says "Enough is enough.  No more money, no more pain, no more broken hearts."

And the second part is louder than the first.

So if you see me red eyed, don't be shocked.  I've got a good reason to cry, a good reason to be angry.  Don't try to fix it with words.  Just let it go.

NICIAW - Endometriosis

My name is Jenn.

The invisible, chronic illness I live with is Endometriosis, stage IV.  Endometriosis, for me, is a disease in which tissue similar to the tissue that normally lines a uterus, grows elsewhere.  In my case, that means my ovaries, my fallopian tubes, my bladder (inside and outside), my large intestine, my small intestine, all the spaces between pelvic structures, as well as my kidneys, ureters, my liver, spleen, diaphragm, and right lung.  Each time my body cycles, those abnormal growths, which cause pain and problems by simply being there, start to bleed (just like having a period).  Only they bleed heavily and intensely, and it drains me of all energy and makes me very ill.  Not to mention the pain.  The bleeding causes inflammatory responses which cause the formation of adhesions and scar tissue, which then creates more places for the endometriosis to grow, and causes pain and problems of its own.  I also get cysts within my ovaries and what's left of my tubes, that get very very large and then rupture, causing loss of blood and bodily fluids, abdominal swelling, and sheer agony.  The adhesions that formed prior to my last surgery effectively turned my abdominal cavity into a solid mass.  There were new arteries that had grown and the adhesions weren't the typical filmy bits of scar tissue, but were thick, meaty tubes of tissue.  My last surgery could not be completed in one procedure, and the second half had to be completed two months later.

I was officially diagnosed following a laporoscopy on March 23, 2007. 
But I started having symptoms when I was 13 and had my first ruptured ovarian cyst.  The ultrasound revealed that the cyst was denser than typical "luteal or hemorrhagic" cysts, and the word "endometriosis came up in conversation.  It was dismissed as I was far too young.  At the age of 18, I had my appendix removed as well as a large ovarian cyst that I was told was called a "chocolate cyst."  At the age of 21, I had to have a biopsy done on my bladder due to the endometriosis that was growing there.  And yet, no diagnosis was offered.

The biggest adjustment I’ve had to make is realizing I face life-long pain and knowing that conceiving without medical assistance is no longer possible, and that at the age of 27, I have reached the end of my ability to bear children.

Most people assume that I still have time to have children, but the endometriosis has destroyed so much of my body that I am out of time.  If we get an opportunity this year to try, it might work.  Otherwise... we are done.  I am young, but that doesn't mean I have time.  They also assume that Endometrios just means I have painful periods and probably sore ovaries and tubes.

The hardest part about mornings are not knowing if I will be able to stand up when I get out of bed.  Will the pain be so severe that I cannot stand up?  Will I throw up?  If I do, will it be vomit or blood?  What about my lung?  Am I going to cough up blood?  And the adhesions - will one tear free today, causing intense pain and bleeding, possibly even landing me in the hospital?

A gadget I couldn’t live without is my electric blanket.  Sometimes, when I'm bleeding internally, I get anemic.  And so very, very cold.  The electric blanket helps me stay warm, and keeps me from shivering (which hurts even more).

The hardest part about nights are when I am so tired but I am in so much pain that I can hardly make myself breathe, never mind fall asleep.

Each day I take hydrocodone, naproxen, and elmiron pills, and at night I need ambien and ativan to help me sleep.  I also take prenatal vitamins, fishoil, and evening of primrose oil. (No comments, please)

Regarding alternative treatments I have tried so many.  Supplements, dietary changes, visualization for pain management, faith... all of those things have come into play, and have helped... a little.  Also, I have done an experimental run of chemotherapy, which was effective in causing me to loose about 1/2 of my hair and while the disease did not progress, there was no remission.  And as soon as the regiment was over, it started growing even faster than before.

If I had to choose between an invisible illness or visible I would choose invisible.  I don't like sympathy, I don't like being the center of attention, I don't like "Aw... you look awful."  But at the same time... there are days when I feel like I am being shredded from the inside out and someone will say "You look really great" and I will think to myself "NOT.POSSIBLE.GO.AWAY."

Regarding working and career, it has destroyed my career.  Do you know people don't seem to hire you when you openly admit that there are days you can't get out of bed, unpredictably.  And you have surgery 2-3 times each year, and each time could mean up to 1 month away from work, plus if you get a period you'll be missing at least a week for that, and if you ovulate, you might get a cyst requiring up to two weeks in bed.... they say they are equal opportunity employers, but.... how can anyone expect to be hired after disclosing such information?  And I feel like it is the opposite of integrity to withhold it.

People would be surprised to know how much this disease really, really hurts.  And how discouraging it can be.  But life is still beautiful, still a gift, still something to cherish and live as fully as possible.

The hardest thing to accept about my new reality has been admitting that I really do hurt.  I really am in pain, and I really could use your help.

Something I never thought I could do with my illness that I did was... well, we're still working on this one.  I want to have a baby.  I want to wait, but I can't.  If I'm going to do it, it's got to be now.  We will see if this happens.

The commercials about my illness... there are commercials about endometriosis?  I've never seen any.

Something I really miss doing since I was diagnosed is dreaming about future babies - about finding out that we'd gotten pregnant this month.  And I miss being able to be intimate with my husband without pain.

It was really hard to have to give up the idea that our children could be conceived, carried, and birthed 100% naturally.

A new hobby I have taken up since my diagnosis is blogging, actually.

If I could have one day of feeling normal again I would spar until my legs quit working, and then lay on my stomach on the beach and trace designs into the sand.  To end the day, I'd be painlessly intimate with the person I love most.

My illness has taught me to take care of myself.  To not say "I can" when I can NOT.  To ask for help, and to not be ashamed when I need a time out.

Want to know a secret? One thing people say that gets under my skin is "If it's God's will for you to have a baby, you will... at just the right time."

But I love it when people give me a big hug and say "I remember" on December 17th, which is the day our little girl was supposed to have been born back in 2006.

My favorite motto, scripture, quote that gets me through tough times is,
   "O Lord, My God, when I in awesome wonder
    Consider all the works Thy hands have made
    I see the stars, I hear the rolling thunder
    I see Thy pow'r throughout the universe displayed...

    Then sings my soul, my Savior God to Thee
    How great Thou art, how great Thou art!"

When someone is diagnosed I’d like to tell them, it's a tough road.  But not a hopeless one.  Look for the beauty in your life... because it is still there.  And now, it can mean even more than it ever did.

Something that has surprised me about living with an illness is how easy it is to get depressed and self-centered because of it.

The nicest thing someone did for me when I wasn’t feeling well was tell me to lay back down and rest.

I’m involved with Invisible Illness Week because I support others who have "invisible illnesses."  I know many people who silently suffer, and I want to give them a chance here to be heard.

The fact that you read this list makes me hope maybe it touched something in you that will help either you or someone you love.

Today's The Day

Today, the Fed-Ex man didn't knock very loudly.  Or maybe I dosed off.  We're going to say it was his fault though, not mine.  So I didn't know he was here, and he left one of those wonderful tags hanging on my door.

The delivery?

Leuprolide.  It's the injectable medication I am starting to help (we hope) with the endometriosis.  So he couldn't just leave it.  So he took my medicine with him and left.

So I called the pharmaceutical company.  And they put me in touch with logistics for Fed-Ex.  And they put me in touch with their special group that handles the delivery of perishable medication.  And they called the Fed-Ex guy on the phone and told him to come back.

He did.  Six hours later.  And as I was signing, he smiled and said he had no idea what could be so important inside the box... after all how much could one medication cost someone?  Oh, if only you knew what you are so often delivering.

Anyway, I have been waiting and waiting for this stuff to arrive.

And after I opened it and gave myself the first dose... I realized something.  I have almost a full two week vial left from last year.  It expires 9/30.  So I can use it.  Duh.  Of course the stuff we just got now will be useful, since I'll be on this for at least two months.  But still.

And just like I remember, the shots don't hurt a bit, but they leave crazy red splotches on my belly as the medication disperses.  Anybody remember if I was premedicating with Benadryl last year?  I can't for the life of me remember if I was or not... Yeah.  Right.  I didn't share the IVF process here.  I forgot about that part.

And no, I am not currently in any stage of the IVF process.  I am genuinely using Leuprolide to hopefully suppress the endometriosis.