Wednesday, August 31, 2011

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.

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Tuesday, August 30, 2011

Rewind.

Do you ever think that you're going through a "rough patch" in life?  One of those times where it's not terrible, but you certainly look forward to when things get better?

Have you ever been thinking that and found yourself, just days later, desperately wanting to push rewind, to go back to that "rough patch" because it was so much better than where you are now?

Me too.

It's not my place to say why, and it's probably not even my place to be as impacted as I am.  But tonight, I sit with tears running down my face (they have been for a couple days now), wishing with everything in me that I knew what to do, what to say... how to be... how to make sure I don't mess this up.  Because it's not about me at all... and yet, I am part of it, in a way.   A helpless, confused, sad, angry part.

I'll be fine.  I really will.  Because it's really not about me.  It's about someone else entirely... and while I've learned how to deal with bad things in my own life, how to handle the unknown and how to be patient and remain hopeful and enjoy life no matter what is going on... I haven't learned how to be the "okay outsider."  And I desperately, desperately want to do exactly the right things, say exactly the right things... but I don't know if there are any words or actions that are "right."

Rewind, please.  Go back to 2010.  June.  Let me start from there, please.  Let us all start from there.  Because there's a lot I would do differently, if I had known then what I know now.

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National Invisible Chronic Illness Awareness Week

I am reposting this because I've received several entries already, but I don't want folks to forget - there are still two weeks left.  Thank you all so much.

Please visit This Link to learn more about National Invisible Chronic Illness Week.

Thousands, millions even, of people suffer with invisible illness.  As months, weeks, and years go by, we learn to stay silent, to quit complaining, to "toughen up."  We learn to not ask for support or help.  We get tired of being  a burden.  Sometimes, we find ourselves dreading the next person who says "But you look just fine."  This year, from September 12-18th, I will be publishing as many stories as are submitted to me.  You can follow this checklist, or you can write it in any other format you choose.  But try to view it as an opportunity to show the world what it is like to be you.  It's important to me this year, to give my readers a voice.  You can email me at kyukidojen@hotmail.com and I will gladly post on your behalf.  Please include what you want me to call you in the post dedicated to you, and as well as you can, answer the following questions.  It is time to see just how NOT alone we really are.

1. The illness I live with is:

2. I was diagnosed with it in the year:

3. But I had symptoms since:

4. The biggest adjustment I’ve had to make is:

5. Most people assume:

6. The hardest part about mornings are:

7. My favorite medical TV show is:

8. A gadget I couldn’t live without is:

9. The hardest part about nights are:

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:

12. If I had to choose between an invisible illness or visible I would choose:

13. Regarding working and career:

14. People would be surprised to know:

15. The hardest thing to accept about my new reality has been:

16. Something I never thought I could do with my illness that I did was:

17. The commercials about my illness:

18. Something I really miss doing since I was diagnosed is:

19. It was really hard to have to give up:

20. A new hobby I have taken up since my diagnosis is:

21. If I could have one day of feeling normal again I would:

22. My illness has taught me:

23. Want to know a secret? One thing people say that gets under my skin is:

24. But I love it when people:

25. My favorite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them:

27. Something that has surprised me about living with an illness is:

28. The nicest thing someone did for me when I wasn’t feeling well was:

29. I’m involved with Invisible Illness Week because:

30. The fact that you read this list makes me feel:

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Monday, August 29, 2011

The Highground.

In Exodus 3, Moses was out in the desert and God spoke to him from within a bush that burned, but didn't burn up.   God spoke to him.  And Moses was instructed to take off his shoes, because he was on holy ground.

I grew up believing that if God was speaking to people (or a person) somewhere, that place became holy ground.  It wasn't the fact that there was a burning bush, it wasn't the miraculous lack of consumption in the fire, it wasn't even the fact that God was there - because God is everywhere.  It was the fact that God was deliberately revealing Himself and speaking to Moses

Saturday, we chose to skip our planned trip to the zoo, and we instead visited a couple veterans memorials.  The first was what I expected - lots of plaques, statues, a tank, a jet.  Those things are sort of... standard.  They are important.  They are meaningful.  And I really, genuinely enjoy going to them.  And I feel honored, and privileged, and so incredibly thankful for all that's been done on our behalf.  We took a lot of pictures for a project we are doing, and spent some time reading the plaques and some time being silent in respect and in memory of what had to be done to purchase our freedom here in the United States.

Then we started driving to the second one. 

As we slowed to turn off the highway, there was something very... different about it.  It felt... well, it felt special.  Spiritual, even.  I was very strongly impressed, inside, to not wear my shoes.

I walked barefoot down the walkway.  It was paved with square stones, each bearing the name of someone who had served our country, who had given the ultimate sacrifice.  I could feel the heat of the sun in each stone.  And I read the names.  All of them.  And the heavy, serious, "God is here" feeling stayed, and grew stronger still.

At one end of the memorial is the memorial that is pictured here:

What you can't see in this picture, is what that memorial was truly like to stand before. 

I don't know if you've spent a lot of time around statues that generate tears in the people who view them, but I have.  Tears leave salt rings after they dry.  Sometimes people will wipe the tears away with their hands, and leave a white-rimmed hand print.  It washes away as soon as it gets wet, but for just a while, it stays.  This memorial, had tear rings.  It had a hand print on the side of one of the faces, faint.  And then I noticed... the dog tags.  The dog tags were hanging off the soldiers' hands, they were around their necks, they were suspended with the many metal rods bearing the names of fallen soldiers.

And it hit me, hard and fast.  The "different feeling" and the fact that I couldn't get myself to wear my shoes, and the sadness and peace that were both prevalent... this was holy ground.  Here, at this memorial, God speaks to people.  Hurting, broken people go there and He ministers hope to them.  He ministers life.  They leave dog tags, they leave watches and medals, and with these little bits of material, they lay down some of their grief.  Because God meets them there, and he takes some of their grief, and gives them what they desperately need. 

During the time we spent there, I found myself in tears.  The changing of the guards at the tomb of the unknown soldier is more emotional.  The rows and rows and rows of silent, white crosses in Arlington cemetery are more somber and are enough to drive me to my knees.

But they are the closest things I've ever felt, to what was at the Highground on Saturday.  I read the names on the dog tags.  I saw the medals hanging among the chimes.  I saw the picture propped by one of the statues, with the words "I miss you and I will always love you" on it.  I did not photograph that picture. 

My words are failing me tonight.  Failing me miserably.

The gist of it all is this:  I went to the Highground.  It is a place where God meets people.  It is holy ground.  And it is truly a beautiful, sad place... and also a place of evident hope and faith.

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Sunday, August 28, 2011

Just One Picture.

This image combines three photos I took today.  And a watermark.  And I really, really like it.

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Saturday, August 27, 2011

Honey, I Love You

Six years ago today, I married my beloved Derek.  People then told us we weren't ready, said to wait, said to slow down... but we knew deep down, that waiting wouldn't change things... just prolong the "hard part" unnecessarily.  Yep.  We were that smart and also very mature.

But the thing is... when we married, we each had a secret.  A big secret, that we hadn't shared with the other.  Not in full.  For the first several years of our marriage, those secrets would rear their ugly heads and we'd beat them back down.  Quickly.  Before the other person noticed.

And then they started to be known.  Right around the time we had our third, fourth, and fifth miscarriages.  And my Gramma was killed in a senseless accident.  And I was trying to rebuild a relationship - a new relationship - with a part of my family I hadn't so much as spoken to in years.  And then I had my first endometriosis surgery.  We did some fertility treatments.  I had another surgery.  Then we did some more treatments.  I got depressed.  Derek got depressed.  I finally let my secret out, and it shook us until we were barely standing - and that, only by the grace of God.  And not long after, Derek let his out, and we were shaken again.  And then we tried another fertility treatment and more surgery, and it didn't work.

Derek stood helpless as I spiraled out of control, caught in the snares of PTSD and depression.  I was battling not just in my mind, but physically, too.  So much - SO much - had to be conquered.  The people we'd worked so hard to bring back into our lives ended up sort of being let back out. Not because we didn't love them, but because at the time, our focus needed to be exclusively on our God and our relationship... and any added stress could have caused this house to wash away the next time rain fell or the wind blew.  But we held on. 

And we've grown closer and stronger, and stronger, and stronger.  Two days ago, we were meeting with my counselor (yes, I see one.  No, it's not a secret.)  Derek had to handle some pretty rough stuff... and I have been noticing that the healthier I get, the more emotional my responses to him are.  Not out of control emotional... but emotional as in I feel things now, instead of just being numb.  I got angry.  I felt hurt.  And I told him.  And he didn't attack it.  He has never, ever, that I can recall, verbally (or physically or in any other way) attacked or put me down.  Ever.

And through it all?  He is mine.  I am his.  We are Christ's.  Do you know how truly beautiful, and rare this gift is?

And now that I've told you vaguely about the hard stuff, I will tell you some of my favorite parts of the last six years:

Laying in the dark talking until the sun starts coming up.  After going to bed early so we can "get lots of sleep."

Laughing so hard we cry, at silly, stupid jokes shared between us.

Having a chance to show love and honor and support to someone who forgives me when I don't do so well at it.  And someone who genuinely appreciates everything I do get right.

Having someone irrevocably, unwaveringly on my side.  In everything.

Swimming with dolphins. 

Being honored and privileged and fortunate enough to know the hopes and dreams of another, intimately.

Seeing my six foot tall, two hundred plus pound husband holding a 24-hour-old kitten, patiently feeding it a bottle and smiling.  In the middle of the night.

Watching our five cats light up and swarm around him when he gets home - and watching how happy he gets.

Growing and changing with someone I love.

Discounted admission to the zoo for our anniversary, because they were closing.  But let us in anyway and we didn't leave till almost two hours after closing time.  And it was okay, because there was a kids' overnight thing and I think the staff thought we were part of that.

Being safe and loved enough to be able to say "I am angry" or "I am sad" and not be afraid of the consequences.

APAP (automatic positive airway pressure) machine.  Like a C-PAP only it's not a constant pressure - it varies with his breathing.  The little black machine has done more for our marriage than any other possession we have.

Most of all, I am thankful that we have been married for six years.  We no longer get "You're so young and you aren't ready for marriage."  We no longer get called newly-weds.  We haven't heard "be married longer before kids" in quite some time.  And yet... it is still just as much work, just as hard, just as beautiful, just as amazing, and just as much an adventure as it was six years ago.

I'm ready for... hmm... about 83 more years?  I don't think I want to live to be older than 100.

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Wednesday, August 24, 2011

NICIAW - Thank you

I've gotten submissions both from my blog, here, and from a few other people I have directly asked.  I appreciate the feedback, and I look forward to letting other voices be heard here.

National Invisible Chronic Illness Awareness Week starts on September 12, so there's still lots of time for you to submit your own post.  You can use the survey questions I posted here, or you can write whatever else you want.  You can submit your posts either in the comments section or by emailing me.  If you use email, make sure you include something in the subject to catch my attention, or it might get overlooked as spam.

Anyway, thank you for your participation so far.  It's very much appreciated!

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Tuesday, August 23, 2011

In 10 Days...

In 10 days, I travel to The City.  I will go to the Hospital. 

And the Surgeon will cut into my body yet again (this will be the tenth time).  She will remove the remnants of my scarred and painful and fluid-filled, useless fallopian tubes.  She will separate organs that have fused into random solid masses.  She will use cautery and wire loops and blades and lasers to obliterate as much endometriosis as she can do safely.  Then she'll use InnerCede (a mesh that is body-friendly and dissolves after several months) and stitches to wrap things up and hold them in place and try to prevent scar tissue from going this crazy again.  And she has assured me that I will wake up in a lot of pain.

And I believe my God will deliver me.

I believe that His promise is one of children.  I believe some day, some how, it will happen.  I don't care if it has to involve doctors and embryologists and In-Vitro.  That's fine.  Because any way you look at it, conception, pregnancy, and then birth - it is all one massive miracle.  I will be honest - I used to be bitter.  I used to be jealous. I used to feel that it was so unfair that so many people were fertile and I was not.  It used to bother me that at a minimum, we required shots and steroids and anticoagulants to conceive.  It still bothers me that all nine of my children live in Heaven.  Not that they are there, but that they are not here.

But today?  If you conceive your babies with ease - I am delighted for you.  If you struggle, but it still happens "the old fashioned way" I am relieved that your struggles were rewarded.  If you used medication, I am thankful that your body responded correctly.  If you used IUI, I am thankful for technology and for your willingness to go beyond "just the basics" in your quest to have a child.  If you conceived with IVF, I am amazed by your strength and tenacity (and willingness to stab yourself with needles on a daily basis).  And if you conceived by an obvious miracle, when it was not possible for it to happen - it makes my heart swell with joy. 

I simply do not care how God works in my life.  I know He will, I know He is.  I know that if I die without ever once giving birth... my God is still God and still good.  I know I do not need biological motherhood to be happy, to feel complete.  I want it more than any other earthly desire, but I will be fine if it never happens.  My pity party was long and pathetic, but it's over now.  It's been over for quite some time.  If you were part of it - I apologize.  If you missed it, I'm glad. 

Some day, someone is going to call me mom.  And it's not going to be a slip of the tongue.  That someone will be a child.  I do not know who will carry and deliver that child.  I do not know what that child's biological or legal relationship to me will be.  But I believe completely that I will be a mother.  And I am fine with whatever it takes for that to happen.  When I talk about the fact that to conceive, we will need physicians and needles and procedures and laboratories, and we will call it In-Vitro Fertilization... don't be sad for me.  Rejoice with me because there is an answer to our situation.  If the day comes when I say we are completely out of the race for a biological child... don't mourn.  Rejoice with me because my name is written in the Lamb's Book of Life.  When I tell you we are adopting (we aren't, yet), don't tell yourself that it's second best.  It has never been second best in our eyes.  It is a dream, a separate dream.  A dream that is on hold for now, because for now, I still have ovaries.  Did you know that you don't need ovaries or a uterus or the ability to support a pregnancy for a successful adoption?

Anyway, I rarely write about fertility issues here.  But I wanted to today, because I want people to know that even if my dreams of being a biological mother never come true, I still love my God.  I am still thankful.  I still thank God for the gift of life.  I will not fall out or back away over this.  And I am not afraid, not ashamed, and not destroyed.

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Saturday, August 13, 2011

Rain

It's raining outside today.  Big, round drops of precious water.  The air smells of earth and rain and of the crops that are maturing nearby.  It is cool and the sound is quiet, steady... soothing.  The cloud-shadow makes things look a little flatter, a little less distracting, a little less harsh.

I love the rain, love to stand outside with my arms open to the heavens, letting it wash over my face.  Years ago, I was given a key to one of the churches on our town.  The pastor has since retired, so I no longer use that key.  But, especially during the 18 months of serious trial and hurt and fear that I've so recently come out of, that key was so important to me.  The moments of peace were almost impossible to find then, but sometimes... sometimes they were there.  Late at night, when the rest of the town was sleeping, I would go to that church.  That Pastor and his wife were my "parents" in high school.  I know their church as well as I know their home.  I would silently open and close the door, locking it behind me.  I'd walk on soft carpet through the darkness, up the stairs and through the narrow hallway, out into the sanctuary.  I'd turn the sound system off, and I would sit down at the piano.  The light from streetlamps or the moon always made just enough light to see by, filtered through the stained glass and gentle.  I would play softly, listening as the music resonated and grew around me. 

I would pray, I would cry for mercy, for hope, for healing.  Mostly for forgiveness.  And in the darkness, in the quiet, He would touch my heart.

And then I'd hear the sound of rain.  It would start imperceptibly quiet and slowly build until it was a rushing roar that surrounded me like air.

In the Old Testament, when the people really, really messed things up, God withheld the rain.  If you want examples, I would be happy to send you a list.  They are there though - Genesis, Leviticus, Deuteronomy, 1 and 2 Kings, 1 and 2 Samuel, and so on.  When the people sinned and God was angry, it did not rain.

But in Genesis, chapter 49, verse 25, it says "Your father's God helps you.  God Almighty blesses you.  He blesses you with rain from above..."  Psalm 68, verses seven and eight:  "When you, God, went out before your people, when you marched through the wilderness, the earth shook, the heavens poured down rain, before God, the one of Sinai, before God, the God of Israel."

And as the rain fell, I knew He was near.  As close to me as the air I was breathing, and mightier than every storm on the earth, My God was there

For me, when the rain comes down, it reminds me of God's love.  Of His mercy, His forgiveness, His grace.  It reminds me that even when I've done wrong, He is ready and mighty to save.  And my heartfelt cries, they do not go unanswered and unheard.  The Lord of All hears and answers.

And the rain falls down.

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Wednesday, August 10, 2011

Briefly

Yesterday, I learned five kids' names.  In less than a minute.  And I still remember them.  :)  That's neat, no?

But it's not what I want to write about.

I left the City last night about 7:30.  We live East of the City, and the sun was starting to set.  The first thing I noticed was how very deeply, darkly blue the sky was.  And how brilliantly white and gold and crimson the clouds were.  Then I noticed that the hills were green... so green.  A deep, almost-blue green.  And the fields were a bright, almost-glowing green.  Barns seemed so red.  Houses seemed so brightly colored.

I don't know why it was that way.  When I got home and looked at some pictures, they looked normal.  The inside of my house didn't seem vivid.  But looking out the windows... stuff looked vivid up until darkness made it all fade away.  And not just vivid.

Alive.  Bright.  Full of beauty.

And I don't know why.

All I knew to do was to say "Thank you Lord, for all you have done."

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!

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