NICIAW - Year Two!

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.  Even if you already submitted something last year, feel free to do so again this year.  You deserve to be heard.

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 10th - 16th, 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:

I am NOT sorry...

So, I hear it all the time.  "I'm sorry, but..." "... I disagree."  "... I don't want to."  Blah blah blah.  I'm sorry but... it is a phrase I have come to truly loathe.

It isn't used as a positive phrase the majority of the time (i.e., I am sorry to have to say this, but your test result came back badly.").  It's just used as an excuse to say things we would not dare say without some sort of get-out-of-jail-free card. 

"I'm sorry but your hair looks really bad."

"I'm sorry, but that's what I want and so that's what I will do."

But the one usage that gets me going... that torques me off and makes me want to scream is this... "I'm sorry, but that's just what I believe."

We need to stand up for our beliefs, not hide behind insincere apologies for them.  I believe in God, Creator God who created all that is and was and will ever be.  I believe His son came to earth in human form, while somehow retaining his God-hood (is that a word?)  I believe he lived a truly sinless life, and was crucified one day when he was about 33 years old.  He didn't stay dead though - three days later He rose and ascended and is seated at the right hand of God the father.  I believe that that sacrifice is what earns me a place in heaven.  I have given my heart and soul to Him,and I believe it is all real.

And I'm not sorry.  I'm not sorry I believe it, not sorry I said it.  I'm not sorry if it offends you and I'm not sorry if you disagree. 

It's Supposed To Hurt

I burned my finger recently.  Was putting in a baking sheet with supper on top, and the front of my finger hit the oven rack.  I heard it go "psssttt" before I felt my hand jerking back (luckily, without the baking sheet full of food).  It's a tiny burn - from my fingernail down to the knuckle, just under half an inch.  And it's just on one finger.

And you know what?  It hurts.  It's distracting.  It makes me feel generally uncomfortable, even though it's just a tiny injury.

That's how our conscience should be.  When we blurt out a bad word, it should sting like this.  It should distract us and bother us.  When we fudge the truth just a little, it should burn.

But our consciences are like my dad's hands.

He is a mechanic (a gifted one, at that), and does a lot of welding and other things that burn his hands.  He doesn't even feel them anymore.  He can have big, angry blisters and not have even noticed they were there until I ask what they are from.  Sometimes, even after he thinks about it, he can't remember. 

We get that way.  We get so used to our little transgressions that we fail to feel the sting. 

The problem with that isn't the absence of pain.  The problem is, when our conscience hurts, we turn to God.  We pray, we repent, we resolve to change for the better.  When that happens, the result is good.  But when we get so accustomed to the little pains, we don't bother turning to him - because we aren't even really aware that anything is wrong at all.

Psalm 139:23-24
God, examine me and know my heart; test me and know my anxious thoughts.  See if there is any bad thing in me.  Lead me on the road to everlasting life.

We have hope though.  No matter how seared our consciences are, God can still search us and show us what we need to see.  The question is, are you (and am I) brave enough to do that?

Your Walk Talks

Growing up, I had an outstanding youth group leader, Mr. Jay.  He had this way about him... we played games and went hiking and had adventures, and we also would sit in the study at the church and discuss the really deep issues in life.  He took a group of kids who would never have been a group by choice, and knitted us together into something beautiful.

One of the things he used to say was this:

"Your walk talks, and your talk talks, but your walk talks louder than your talk talks."

In other words... yeah, what you say matters.  It gets through to people.  But not to nearly the degree that what you DO gets through.

I was laying on the couch this afternoon thinking, and that's what kept coming back to mind.  I know for me personally, my walk and my talk don't always line up.  I send mixed messages, even though I'd rather not. 

What areas of your life do you need to examine and sort out?  What things do you need to answer once and for all, so that your walk and your talk are saying the same thing?  Just one little phrase that stuck in my head (and I'd bet lots of other teenagers heard him say it and let it stick in their heads too), that gets to me every time I let it.

Prayer Request

My daddy cut his finger today, really badly.  He cut almost entirely through his extensor tendon.  He's waiting now to see the doctor for titches and surgical evaluation - not sure yet if he'll be able to just get stitched up or if he's going to need surgery to repair thing.

**update**

Dad's home from the clinic with plenty of stitches in.  He's not in a splint or cast right now; enough of the tendon is intact to not need that.  He's nervous about possible infection or lingering pain, so if you could pry specifically about that, I'd appreciate it a lot.

***update again***

Dad's finger is feeling plenty stiff but otherwise is okay.  He's not liking having to be careful not to muck up the sutures, but that's just expected and par for the course.  He is healing well.  Thank you for praying everyone.

Exercise Regimens, Cancer and You

For the first time, I have chosen to allow a guest post.  What he says, I agree with very much.  I think his message is important and unlike other requests I've had for guest posting, I feel that this one is worth passing on to my readers.

Exercise Regimens, Cancer and You

Guest Post by David Haas

Cancer can bring your life to a screeching halt, but you’ll find that as you go through treatment and as each day comes closer to normal, you still need to move forward. One way to normalize each day after a cancer diagnosis is through exercise. The National Cancer Institute states that exercise has an enormous positive benefit on both cancer treatment and cancer risk reduction. However, if you have never exercised before it can be hard to get into it.

If you are worried about getting started with exercise, remember that you do not have to do it alone. You will find that there are likely family members and friends who are wiling to help you, but if you want good concrete information, take it to a gym and talk to a professional trainer. At the very least, the gym will help you learn how to use all the different equipment. A lack of knowledge in this area is very common with adults, and when you are nervous about using the equipment for the first time, remember that everyone had to start from somewhere!

Remember that you do not need to stick with one exercise if you find that it is boring, dull or painful. As a matter of fact, the old saying of “no pain, no gain” is completely wrong. Good exercise leaves you feeling sore and pleasantly tired. Exercise taken too far leads to pain and fatigue. If you are pushing your body too hard, you’ll find that you won’t be able to exercise the next day. This is something that can make a huge difference in how well you do in the future, so remember to take it easy, especially if you are nervous about getting started.

Once you have started, stay started! Anyone can do a few strenuous exercises over the space of a few days, but it takes a great deal more effort to keep at it for a regular stretch of time. Make a schedule and stick to it. Remember that just by exercising three or four times a week, you can make a huge difference in your physique and well-being.

Whether you are dealing with breast cancer, testicular cancer or mesothelioma, you’ll find that exercise can improve your general health and rate for success. At the very least, exercise can improve your mood. Exercise releases endorphins into your body, and it allows you to clear out the stress that you may be experiencing. Take a few moments to consider what your options are and what kind of exercise is most likely to suit you.

Exercise can be fun. Don’t let a lack of experience and depression stop you. Consider the link between cancer and fitness and use what you know to spur you forward.

What I Am Proudest Of

This is what I am proudest of.  Out of every thing God has given me the ability to do, everything I have accomplished, every drop of sweat and blood and every tear, nothing has meant as much to me as this. 

When I was twelve, I was just a scrawny, insecure, abused little girl with no hope and no concept of "future."  All I had was the present, and the present was nothing I wanted.  But one afternoon, my dad came home from his new job and handed me a newsletter put out by a local hospital.  He said "read the class list - see if there is anything in there that you would like to do together."  My eyes landed on "Karate for adults and children aged eight and up.  Maximum 25 students."  Dad and I made 23.  All of us white belts, with one lone black belt as the instructor.  That man became first an instructor and then a mentor and then my doctor and then my friend, as years passed.  And it turned out not to be Karate - it was Tae Kwan Do, but with some Judo and Hapkido mixed in. 

At our school, earning a black belt is no easy feat.  It takes years, and it takes everything you have to give - and then more.  At age twelve, I saw that and suddenly, I had something in my future.  Something I wanted - needed even.  Something that I could do. I knew I could.  It literally changed everything about who I was.  Not dramatically, especially at first.  But a subtle shift from hopeless to hopeful, from lost to found, from broken to healed. 

There has not been a day since, that I have questioned whether God used martial arts to save my life.  He did.  He still is. 

And that is why this is what I am proudest of.

P.G. With No Baby

I've been told  many, many times that "whatever is wrong is self inflicted" in reference to my leg.  And I've been assured that it definitely couldn't hurt as much as I say it hurts.  I've been told I'm not sick, that there's no physical reason for the symptoms I battle daily.

But recently, that's all changed.  My doc believes in me and has fought to help me heal, and has endured the highs and lows as my leg gets better and worse unpredictably.  And finally, there's a word for what I am fighting.  Two words, actually.  Pyoderma gangrenosum.  Look it up if you want, but be warned that most articles include graphic and rather unappealing pictures.  Basically, it means my body attacks itself from the inside out (so in that regard, I suppose you could call it self-inflicted).  It favors previously damaged skin, but I have no control over when or where or how badly it will do so.  When it flares, my skin first turns red, then warm and spongy, then blisters, then peels and rapidly erodes  until I have ulcers muscle-deep and usually bigger than a silver dollar.  It is excruciatingly painful - far more so than it should be given the wounds themselves.  It has coupled with a disturbing lack of immune response to allow infection after infection to form, for which I am almost daily at the clinic receiving treatment. 

Now, that said, I'm not trying to whine.  I honestly have a beautiful life, made that way by a faithful God.  It's just that people often wonder what it is that is actually wrong with me - what keeps me so sick so much of the time.  And this is certainly not the only problem, but it is a big one.  One I'll overcome.  And when I do, God will get the glory because it will be by His grace.

Lisa Snot

As kids, we learn language by listening.  We repeat what we hear - exactly as we hear it.  Trouble is, sometimes our brains will twist around what really goes in, to match what we have previously heard.  The results, I think, can be hilarious.

For example, when I was in second grade, we were asked to write about a person we would like to meet some day.  Any person in the world.  I chose José Canoosey.  You know, the guy at the beginning of the national anthem?  I wanted to find out why it mattered what he did in the morning, by the dawn's early light.

A friend of mine for years believed that things were "nuke-warm."  His logic?  When we nuke stuff, we don't always do it long enough so it comes out just kinda not warm and not cold.  We were in high school before I finally convinced him that most of the world referred to that state of being as LUKE warm.  Which made him ask, "Who's Luke?"  Good question, friend.  Good question.

Another friend recently shared that growing up in church, she found herself wondering every service who Lisa Snot was, and why Lisa Snot went into temptation. 

A child in my class has been memorizing definitions of the various forms he does.  One such definition refers back to the Silla Dynasty (Korea).  But in his head, he has always heard and therefore believed we were referring to the SillY Dynasty.  And he wanted to know who or what made that dynasty so silly, and why we were disrespectful of it by calling it that.

So.  Tell me about the things you or your friends or children you know have heard and said, only to later find out you were just a little off the mark.

Where Honor Lives

July 4th, in our nation, is a special day.

We celebrate freedom.  Families gather, we eat food that tastes yummy but probably isn't so good for us, we spend time laughing and running barefoot through the yard.  Together.  Then we gather to watch various substances that have been crammed into little vessels get flung into the air where they explode in bursts of color and light.

And it's all very nice.

But it's not what is inside me on this day.  Today I don't think about exuberant displays of freedom.  I don't think about living in a country that has so many little "perks" that we are forced to complain about the little stuff because the "big stuff" just isn't a present problem here. 

I think about honor.

In my head, I think about Independence Day when I was maybe ten or twelve.  My best friend and I were with my grandparents on their boat, watching the fireworks display surrounded by other boats as we floated in the Mississippi.  The light and sound from the fireworks was bouncing off the bluffs that surrounded us.  It was loud and bright and you could feel the energy in the air.  Excitement and exhilaration.

I looked down from my perch, with my legs dangling high above the water and my arms resting on the rail around the roof of the boat.  There was a small bass boat tied to our boat - nobody we knew.  But for the first time in the hours we'd spent so close together, I looked at them.  A young boy - maybe five years old.  His little life jacket stood out against the dark floor of the boat where he sat, leaning on the legs of an older man.  He was probably seventy, maybe more.  He wore a navy blue shirt and his gray hair was thinning.  His face had "the look" - you know, the expression that says "I love my life, I love who I am with, and this moment is beautiful" at the same time it says "I have seen and heard and lived through things most of the world can't even imagine.  I have seen the darkest parts of the world."  And I could see in his eyes, that the darkness he had seen was what let him really appreciate the light around him now.

Usually, after the pyrotechnics are completed, it is a rush to get every boat started and compete to be the first to leave that stretch of river.  But before that rush starts, there is always about two minutes of silence, where people are waiting to see if it is really over.  And that night, the silence was pierced after about thirty seconds.  Somewhere in the darkness, on a boat or perhaps standing somewhere on shore, two people had and played bagpipes.  The familiar sound of our national anthem was almost haunting as it rolled and echoed across the water.  Most people silently stayed where they were; unsure whether they should respond or not.  But the old man in the boat next to ours?  He stood tall and straight, his hand raised in a sharp solute, eyes fixed on the flag displayed on the front of our boat.  In that moment, I saw honor alive and well in him.  But it doesn't end there.  The small boy was almost asleep in the bottom of the boat.  He watched the man stand, watched him solute, and struggled to his feet.  He did his best to emulate the man he clearly admired; feet together, knobby little-boy knees straight, shoulders back, and his best attempt at a solute. 

As the anthem faded away, some people started to move.  And then slowly, softly, the first strains of Amazing Grace floated through the darkness.  The man continued staring at our flag as tears rolled down his face.  The young boy looked up at him, and then took his hand.

"Gwampah, I wuv you.  I wepect you.  Fank you for pwotecting us.  I wemembew.  And I wemembew yoah fwends too.  I won't evah fowget."

And that, my friends, is where honor lives.  In the heart of the child who saw, recognized, and embraced that which was worth honoring.

Yesterday was Father's Day.

Usually, on Father's Day, I write something for my husband.  Something to the effect of "You're the one I love and you have children who live in heaven and you're still a daddy."

And that's all true.

But this year, I'm doing something a little different.

I left yesterday noticeably not mentioned.  Because the truth is, it doesn't matter what words I use.  It doesn't matter how heartfelt or true or poignant they are.  Nothing I can say is going to change the fact that when my husband walks in the door after work, there are no tiny feet or sticky fingers or shining eyes to greet him.  There aren't any words that can fill that void in his heart and in his life.  And there isn't anything I can do to change that.

It is hard to know where the balance is.  When does "living life anyway" become "denial of reality?"  How do you know if it's "healthy grief" or "abnormal fixation?" 

What do you say when you love someone and you are literally willing to offer up your body in an effort to make his dream come true?  How do I show him how much I really would fight to change this, when no amount of fighting actually will change anything at all?

And what should a person say when words seem only to muddy the waters? 

Is saying "Happy Father's Day" really the best thing for my husband?

I have thought about it a lot this year.  Mother's Day came and went.  I was told "Happy Mother's Day" and I spent time thinking about Annaliah and when my husband gave me the beautiful card he got me, I was touched.  But I haven't looked at the card since; because it hurts.  And I know for him, it hurts when something reminds him.

So rather than trying to use words to put a band aid on the hole in his heart that was made the day our daughter stepped into eternity, I am just saying this:

"I love you.  I am in this with you.  And we'll see her soon."

And I am reminding him of the one thing that He has spoken softly, many times:
Be still and know, that He is God.

What If?

It seems like the longer I live, the more chances I get to ask myself "What if?"

What if June 1, 2006 had gone differently?  What if that ultrasound had shown a healthy, living fourteen week baby?  What if my deep-rooted fear and sinking feeling had been unfounded?

I'd have a child now; she'd be about five and a half.  I'd be thanking God for the time with her and mourning how quickly it had passed.  And she'd have had five and a half years of experiences to shape her into who she is. 

Instead, my baby went to heaven before I got to meet her.  Instead, my husband and I saw that still, silent ultrasound and spent the next day begging and praying and trying to hope that things weren't as they seemed.  Instead, we chose her name with tears and longing.  Instead, we watched her due date come and go and our arms stayed achingly empty.

What if on January 31, 2007 I had let my Gramma stay at my house to take care of me after my knee surgery?  What if she had not been in the van during that crash?  What if the van hadn't been there?  What if the driver of that milk truck hadn't chosen to use his cell phone?  What if the road crews had done a better job of spreading salt on that particular stretch?

Would that mean that today, I'd be able to ask my Gramma how to love my dying friend?  Would it mean that I'd have someone to give me the push I need to love without reservation?  Would it mean I'd have fewer nights filled with empty, silent tears?  Would my heart hurt a little less?

What if I had chosen to ignore the growing attachment and attraction I felt toward Derek nine years ago?

I'd have loved and perhaps married someone else.  And I'd have missed out on so much.  I'd have missed the laughter and the joy and the tender moments.  I'd have missed the frustration and fear and uncertainty.  I'd never have stood in disbelief as I watched my new relatives dance in a circle to weird Greek music.  I wouldn't have found myself having to choose between what I wanted and what was right as I responded to certain situations.  I wouldn't be laying on the couch with my leg in the air, knowing that tonight my husband will come home and I will be proud of how well he did today as he works a job that he is not "naturally gifted" to do.

What if in September of 1999, the person visiting me in the hospital had simply said "That is sad and I am sorry" when I told him I had to find a new home?  What if his wife had said she didn't want to start again with yet another teenager?  What if my dad hadn't been agreeable?  What if the doctors had said no?

I wouldn't have learned to love.  I wouldn't have learned to laugh, or to trust, or to be honest.  I wouldn't have experienced unconditional acceptance into a family that loved me just because they wanted to.  I wouldn't have had the foundation I needed to go out into the world and build a life.  And truthfully, I probably wouldn't have survived.

What if my childhood had been easier?  What if I'd never been betrayed, abandoned, or abused?  What if I hadn't survived things that are almost unspeakable?

I would have been closer to "normal."  I wouldn't have been living with PTSD for as long as I can remember.  I would have had less fear, less anger, less pain.  I wouldn't have had to be as strong or as brave.  I wouldn't have learned to lie about everything.  I could have "just been me."  But I wouldn't have had a reason to develop the compassion I have today.  I wouldn't have such a personal motivation to drive so much of what I do.  I wouldn't know how profoundly forgiveness changes a person.  I would never have seen the amazing transformation that happens when someone literally turns from evil and surrenders to Christ.  I probably wouldn't be as accepting of others and I am certain that I'd have less wisdom, less strength, and less hope. 

I could go on, and on, and on.  Because there are hundreds, no, thousands, of "what ifs" in my life.  In every life.  There are so many things that change the course of our lives from that moment on.  Sometimes, we get the better option.  Sometimes, we don't.  Always, we can choose to look back and ask "What if?"  Sometimes, doing so can help us.  It can give us insight, it can give us wisdom, help us make better choices in the future.  It can give us a chance to be grateful and an opportunity to embrace peace and acceptance.  But it can also hurt us.  It can make us regret things we cannot change.  It can make us grieve, it can make us angry and uncertain and afraid.  We can look back and feel slighted and compel us to make decisions that are hurtful to us now.

I have one final "what if" that I would like to ask.  One question that I think we all need to answer for ourselves, in our own hearts and minds.  One thing that needs to be settled permanently within each of us.

What if I choose to look back at my life from time to time, and ask myself how things could have been different, and then I take that perspective and use it to answer the 'what ifs' that face me every day, so that I can face tomorrow without regret?

Leg Time

1st Peter 2:24:
Who His own self [meaning Christ] bore our sins in His own body on the cross, so that we, being dead to sin, should live righteously:  By His stripes you were healed.

Healed.  It is with joy and excitement and hope and thanksgiving that I speak that word.  Healed.

For years, I attacked my own body.  I kept it hidden from most of the world, but not from the doctors who worked so hard to help me heal from those attacks.  I received compassionate, skilled medical care; many who admit to self injury are not so fortunate.

But medicine and time can only heal so much.

My right leg has been hurt quite badly, many times.  A few years back, it caught up to me.  Requiring yet another set of sutures landed me in the hospital.  Hospitals are good places to go if you are sick.  Hospitals are also good places to go if one wishes to be exposed to a plethora of hurtful bacteria.  My leg got infected, and for the first time in my life, the medical care I received was sub-par.  It festered and deteriorated for months before I had the first of too many emergency procedures.  At that time, it was found that the years of injury had caused significant vascular impairment.  In other words, you can only wreck so many arteries (big and small) before your foot simply doesn't get enough blood.  Because of the circulation problems and the effects of stress on my immune system and the unfortunate combination of resistant bacteria, it has been a rocky road since then.  I have spent more days either in a walking boot or on crutches, than I have spent walking normally.  I've got very limited sensation.  Lasting muscle weakness.  Pain, all the time.  And when stuff happens - little stuff, like a scuff on my heal from the stairs or a scratch from one of the cats - it doesn't heal like it should.  It can't. 

Last fall, things cascaded downhill really quickly. 

I am proud to say, though, that I have not done anything to deliberately harm myself in any way since the beginning of 2010.  I've been taking care of my body; seeing it as a gift from God.  It has been a fight.  A difficult, frustrating fight that has been worth it every second of the way. 

But it is in my medical record that I used to hurt myself, deliberately.  Every time a professional has entered the picture to try to help with my leg, it has been assumed b y them that I am still doing things to hurt myself.  It's led to ineffective and unprofessional treatment.

I am now three months into a process of trying to heal the ulcers that broke through the surface of my skin graft and proceeded to worsen and deepen for weeks as wound care specialists treated me for infection.  Infection that isn't present.  And it has been three and a half weeks of daily (yes, every day) appointments with my family doctor.  Three and a half weeks of finally having someone acknowledge that this is not something within my control, and it is not something I have caused.  Three and a half weeks of compassion and the best medical care that my doctor and the nurses working with him can provide. 
And healing is happening.  All the fancy solutions and ointments have been abandoned in favor of simplicity.  Pain relief has been not only provided but encouraged.  Nobody is wasting time trying to place blame.  And the wound that physically should not be able to do so, is healing.  Rapidly and well.  Skin is growing where skin can't grow.  I am completely without signs of systemic infection, and there is also no evidence of bacterial colonization.  Some of the defects that were present even after reconstruction and grafting surgeries have been filled in with healthy tissue.

It is nothing short of amazing.  Even miraculous.

And instead of a future full of continuous appointments and frustration and pain, there is an end in sight.  The day is not so far off when I will be able to leave the clinic and know that I don't have to go back any time soon.  Don't get me wrong; my doctor and the nurses and even the receptionists are wonderful people.  People I care about, people who are uplifting and kind, who are the sort of people I would choose to spend time with simply for the sake of their company.  It's just that the daily appointments, the constant need for said appointments, and the amount of energy, time, and attention being devoted to me, feels suffocating.  I'm the sort of person that prefers to fly under the radar.  Solitude doesn't feel lonely to me - it feels peaceful.  There are times when I am not sure what I look forward to more - being healed or the simple reality of not needing and not receiving this sort of intervention every day. 

Eventually though, I will be well enough to just pack a bag and go stay with my dad and family without having to worry about making it to my next appointment.  Eventually, my time and energy will be put into something more, something better.  Eventually, I  won't require so much as an Advil or Tylenol for pain relief, let alone narcotics.  Eventually, I'll walk into that clinic on two feet with no crutches in my hands, and I will undergo the recommended yearly physical exam, and there won't be any problems.  I'll smile at the nice people and walk back out the door.

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...

There's This Song

And for the last five and a half weeks, it has been intermittently true.  There is someone in my life who some say, I should not love.  Some say, I should not care.  But I do, and I always will.  And that someone... is sick.   Really sick.  And for a few different reasons, I cannot be there.  I think maybe it looks like I don't want to be there.  Or like I am not comprehending the seriousness of what is happening.  Or like I am just... choosing to be absent.  And I think that is maybe giving, to some people, the impression that I don't care. 

Couldn't be further from the truth.

Being here is okay, most of the time.  But there are moments, every day, when it feels like it is tearing me into pieces.  Moments when I think of this person and I literally cannot breathe.  I think of the pain that is being endured and the battles being fought and lost, and I find myself wondering where this could all go.  In my heart, deep down, I have a pretty good idea, and I don't like it.

So if you see me and there are tears streaming down my face or I look tired or pale; or if you think I am avoiding you or neglecting relationships... that it isn't about you, nor is it even really about me.  It is about someone I love and miss deeply and fear greatly for.

This song is performed/recorded by LifeHouse. 
Lyrics are (C) State One Songs America

Broken
The broken clock is a comfort
It helps me sleep tonight
Maybe it can stop tomorrow
From stealing all my time

And I am here still waiting
Though I still have my doubts
I am damaged at best
Like you've already figured out
I'm falling apart
I'm barley breathing
With a broken heart
That's still beating
In the pain
There is healing
In your name
I find meaning
So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you
The broken locks were a warning
You got inside my head
I tried my best to be guarded
I'm an open book instead
And I still see your reflection
Inside of my eyesThat are looking for purpose
They're still looking for life

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating
In the pain
(In the pain)
Is there healing?
In your name
(In your name)
I find meaning
So I'm holding on
(I'm still holding)
I'm holding on
(I'm still holding)
I'm holding on
(I'm still holding)
I'm barely holding on to you

I'm hanging on another day
Just to see what you will throw my way
And I'm hanging on to the words you say
You said that I will be okay

Broken lights on the freeway
Left me here alone
I may have lost my way now
I haven't forgotten my way home

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain
(In the pain)
There is healing
In your name
(In your name)
I find meaning

So I'm holding on
(I'm still holding)
I'm holding on
(I'm still holding)
I'm holding on
(I'm still holding)

I'm barely holding on to you

Super Mature and Effective Pouting Technique

I have to say... I have not managed to start or maintain a popular... anything.  The creators and maintainers (is that a word??) of Blogger have.

But this new interface truthfully feels unfinished.  And awkward.

Not impressed.

So I've been pouting by not posting.

Effective and mature, yes, I know.  :)

Random Things

In the 23 days since I last wrote, it feels like everything has changed.  And also like nothing has changed.

Most of my writing and "sorting" has been done in my journal.  My paper and glue, use-a-pen journal.  Rather than try to recap all of it, I'd prefer to just... share.  A little bit of two of the entries.  Enough to show you what's been on my heart, enough to illuminate the struggle and the fight and to show you that even in those things, there is beauty.

---

God,
I need you.  I need you to consume me like a fire, burning away everything that can be destroyed.  I need you to change my heart and renew my mind according to Your will.  My own will is sinful and imperfect.  I love with hesitation and with impurity.  I speak lies with ease and I am afraid of the truth.  But part of me still wants to bend to your will.  My soul is weak and my body is dying, but my spirit is alive and cries out for You.  So fill me, change me, consume me.  Rewrite my script, and make yourself the primary role.

Save me, oh God, and I will be saved for all eternity.

"I Have Eternal Life"
Truly, truly, I say to you:  Whoever hears my Word and believes Him who sent Me has eternal life. 
~1John 5:24a

---

I need to go home.  To my family, to my Father, to my church.  I miss God.  I miss His Word.  I miss His love.  I miss His Presence.  And I miss my Pastor.  I miss his influence in my life.  I miss his protection.  God gives us so many people for so many things... but He only gives us one Pastor.  If something happens that makes it impossible for that Pastor to keep being our Pastor, God can give us another.  But it's not a matter of simple choice.  It's a matter of necessity and a gift born of love.

I have so much I am hiding.  So much shame.  But my Pastor loves me.  He really does.  He always will.  He loves me as a daughter.  And the pain of not being under his care, of not having a leader in my life, of choosing to walk away from that gift, is shredding my heart.

Today, I realized something.  If any of the kids in my class came to me, after being gone - regardless of how long they'd been gone or why they left or what they'd done while they were away - even if the things they'd said or done were so horrible that they hurt the deepest parts of me - I would run to them with open arms and hold them and tell them I never stopped loving them.  And my Pastor is better at love than I am.  So it is time to go home.

Lord, help me and give me the courage and strength that I need to do this.

I Made My Bed...

But now I want to get up.

I was so little when I started deliberately hurting myself.  So little.  And stopping... stopping was honestly the most effort I have ever had to put forth to follow through on a decision.

And it was worth every drop of sweat and every tortured moment.

I have not and will not, ever, choose to go back down that road.  Because when I was five, maybe I didn't have a choie.  Maybe then, because of my youth, I was without other options.

But now, I do have a choice.

I also have a large skin graft on my leg that has broken down and degraded and ulcerated.  There isn't a solid explaination.  And the question has been raised - did I do this to myself?  And more importantly, did I do so deliberately?

And my answer... doesn't seem to matter.  No.  I didn't do anything to harm myself.  Well, I have stubbed my toes a few times lately, and I've pulled a couple muscles working out.  But nothing deliberate.  There are so many ways I could try to argue, so many things I could try to do to prove myself, but... what is the point of doing that?  Would it actually convince anyone of ANYthing?  I don't think it would.

The only thing I can do is trust the truth to be revealed - whatever that is.  Something has to have caused this.  My prayer is that someone, somewhere, figures out what.  And that somehow, someone can stop it from happening again.  I don't really care who or how or what... just as long as my leg can heal. 

And I can't even earnestly and genuinely insist that they are all completely off their rockers.  They are wrong, yes.  But they wouldn't be thinking along these lines in the first place if I had never had those problems.

They are just doing their jobs.

That's what I tell myself when they ask and I breathe deeply and fight to uncurl my fist and everything ni me wants to scream and yell and pitch a fit.

What is happening now, is not my fault.

But the questions it is raising, they probably ARE.

Swearing In

In court, if you are part of an actual trial and you have to testify, they have a procedure in which you are "sworn in."  Once you have done that, you are committed to telling the truth, the whole truth, and nothing but the truth.

So help me, God.

I am swearing in, here. 

And it scares me.  I've always maintained a certain amount of detachment, freedom, from this blog.  That won't change.  But I also have frequently hidden behind "this is not for public knowledge" to avoid telling the whole truth about situations.

This post is months in the making, folks.  That's weird for me.  And different.

But the phrase at the top of my blog talks not just about being living proof, and not just about carrying light into the darkness.  It talks about the truth giving light.  And the truth is, there are ways to maintain privacy and anonymity without concealing that truth.

The truth is, I have been in a tooth-and-nail, knock-down-and-drag-em-out fight for my life.  In November, that fight had a temporary time out, as I was too sick do any more than lay in a hospital bed being filled with medication and connected to lines and tubes and having lots of surgery.  But I've healed well physically, and I'm back in the fight full force.  And I claim here to be honest, I claim to want to use my life, both the good and bad parts, to touch others and minister to them, and show them how God can do so much to help them.

And it's been clear for some time now that accomplishing that means telling the truth.

The truth is, my fight is the sort of fight that Ephesians 6 talks about.
And that about wraps it up. God is strong, and he wants you strong. So take everything the Master has set out for you, well-made weapons of the best materials. And put them to use so you will be able to stand up to everything the Devil throws your way. This is no afternoon athletic contest that we'll walk away from and forget about in a couple of hours. This is for keeps, a life-or-death fight to the finish against the Devil and all his angels.
Be prepared. You're up against far more than you can handle on your own. Take all the help you can get, every weapon God has issued, so that when it's all over but the shouting you'll still be on your feet. Truth, righteousness, peace, faith, and salvation are more than words. Learn how to apply them. You'll need them throughout your life. God's Word is an indispensable weapon. In the same way, prayer is essential in this ongoing warfare. Pray hard and long.  (MSG)

If the things I am fighting, were things I could fight on my own, then I wouldn't need God.  I wouldn't be leaning completely on Him.  I wouldn't be entirely dependent on Him to just get through the day.  I wouldn't need a supernatural boost to walk out my back door and try to face life.

When my daughter went to heaven, I thought I was truly and entirely broken and dependent on my God.  And then my Grandma was killed, and I realized I had never known dependence before.  And then, something changed.

The past I had been fighting so fiercely to hide from everyone who loves me, started leaking out.  A little bit at a time, the truth started to spill out.  Tiny bits at a time were revealed first to my husband, and then to my Pastor.  My husband, didn't know what to do.  He didn't know what words to use or what he should feel or what I needed... and he didn't know what he needed either.  Our Pastor, wasn't lost.  He wasn't overwhelmed.  He wasn't confused. 

And he wasn't surprised.  Through a series of meetings and pre-meeting letters, I shared more of my past with him than I'd shared with anyone.  And I was amazed.  It didn't hurt him.  It didn't hurt me.  It didn't cause a cascade of terrible events.  And it didn't change the way my Pastor treated me or my husband.  He continued to show us God.  And His love.  And for the first time in my life, I thought maybe I didn't have to hide the truth.  I thought maybe I could actually tell it and still be okay. 

The first counselor I saw was a good man.  I do mean that - he was good.  He was kind and compassionate and loved God and assured me that my Pastor was right when he told me that this counselor would understand and help without any need for me to feel out of place or ashamed.  But... he didn't seem quite strong enough to handle the things I told him.  I started... tentatively.  I shared just a little bit at a time, things that I knew were more... average.  Things I went through that I assumed lots of others had gone through as well.  And those first admissions were received with compassion and gentleness and support, which is what I needed.  He reminded me often to lean on God and to let my faith carry me.  Which would have been fine, but the things I was not saying, make faith and trust so very difficult.  And terrifying.  And I was convinced he was not strong enough to handle it if I were to tell him the things I still had bottled up.

He eventually decided to ask another counselor for help, to attempt doing EMDR

Flashbacks and nightmares and almost every symptom associated with PTSD took over my life.  Each day seemed longer and harder than the day before.  I couldn't eat - on a good day I would manage an entire tangerine and a handful of goldfish crackers.  Most days, it was less than that.  Anything more and I would vomit uncontrollably.  It wasn't an eating disorder; it was fear and anxiety and depression taking over my body.  Out of desperation, I turned to the only thing that had ever overcome the memories in the past.  I started cutting myself, deeper and more extensively than ever before.  With that came dishonesty and shame and constant fear that the wrong people would find out.

My self-destructive spiral landed me in the hospital.  It saved my life; I would never say otherwise.  But I was repeatedly reminded that I was there for crisis intervention.  My past was not appropriate subject matter for any of the counseling services received there.  A close friend visited daily and became the only person I could share the memories with.  Slowly, painfully, they came out.  Not all and not even most.  But some, a little at a time.

The counselor I started seeing after being released was different than anyone who had tried to help me, ever.  The first thing I noticed was that he was strong.  And intelligent.  Painfully blunt, which is what I crave in communication.  He was and is in many ways similar to my Pastor; the difference was, I actually care what my Pastor thinks and feels about and toward me.  The counselor, was only a counselor.  I had no fear or shame in revealing what was really happening, because there was no pre-existing connection.  He was in my life for one purpose and only one.  And that was what I needed most.

Since then, it has been two years.  Those two years have been spent in this battle I talk of.  I am overcoming a past that belongs in one of those horror films that is too bizarre to be believable.  A past that consisted of polar opposites in almost every arena.  The things that were done to me, the things I saw and heard, the people in my life, all seemed to be either very, very evil or very, very good. 

I was hurt.  When I was a child, a very, very young child, I was hurt.  I was abandoned and neglected and abused physically, emotionally, sexually, and spiritually.  As I grew, I had two worlds.  The world of good parenting and love and loving God and doing healthy things, and the world of abuse and shame and pretending to worship something distinctly not God.  Harming myself was my way to bring back reality on days when it all became too confusing.  It is something I started doing in kindergarten - maybe earlier, but I still clearly remember the first time I chose it as a way to turn off the images playing through my head.  It was the one thing, other than my body, that was part of both worlds I knew.

The abuse continued for years.  It was horrific and graphic and nearly destroyed my spirit, soul, and body.  I am not sharing details here, not because it's "not for public consumption" but because when it comes to sharing, they aren't needed.  It's not the specific events or even the people involved that make living today so hard.  It's what those things did to shape my thoughts and my beliefs and the way it impacted my body.  It's the fear and anxiety and flashbacks and disconnects and the random things that trigger terror and anger and specific thoughts.  And it's the way it interferes with my faith and my beliefs and the way I feel scared and ashamed almost all of the time.

God is the one constant that has been with me.  The only One who is strong enough and faithful enough to see me through.  And He has put people in my life to act on His behalf.  I don't know exactly what I will be sharing in the coming months.  I probably will never go into any detail; I just feel like the details of what I went through aren't what the world needs to know.  I think the part that matters most is how it changed me - and how I am fighting those changes now.

Thank you all for reading and for your support and encouragement. 

Half a Dozen Roses

When I was growing up, I wasn't one of those little girls who longed for Prince Charming to come my way and sweep me off of my feet.  I didn't need him.  I had my Daddy, and I had my Grampa.  The loved me and cherished me and were the men who taught me what a man is supposed to be.

I was less than six months old on my first Valentine's day.  My Daddy didn't do anything for me - I was a baby, after all.  But my Grampa gave me a fancy card and bought me a single red rose.  He was my very first Valentine... and that is something that nobody else will ever be.  After my dad regained custody of me, when I was about six and a half, he started a tradition of buying me flowers - lots of them - and chocolate and a fancy card.  He did such a beautiful job of showing me I mattered and was loved and that he thought the world of me.  So did my Grampa.  Others did, too, but there is something special about being a little girl and being treated that way.  Something sweet that lasts.

But even though my Grampa was my first Valentine... I was not his.  My Gramma was his Valentine.  Their love is so beautiful, that it makes me cry.  And I don't cry.

On January 31st, 2007, my Gramma was killed in a car crash.  It has been six Valentine's days since then.  Six days that celebrate love.  Six days that my beloved Grampa has had to watch the world celebrate while his heart breaks. 

This morning, I stopped and bought Grampa a dozen pastel roses.  They are his favorite.  Red ones and white ones make him cry - red because that's what Gramma always got him, and white because that is what we adorned Gramma's casket with when we lowered her into the ground. 

I also bought a dozen red roses.  Red for love... that special love that long-lasting couples share.  That love that I saw between him and Gramma after 49 years of marriage.  Six, I gave to him.  One for each Valentine's day since she went to heaven.  He got a little teary when I explained their presence and why there were six red ones.  I didn't tell him about the other six.  I was already having a hard time holding my composure.  I forgot to remove the price tag from the cellophane wrapper.  I don't know if you know this, but at least around here, roses aren't cheap.  Especially not in the morning on Valentine's day.  And especially if you want them to be exquisite.  When he saw the price sticker, he blurted.  I blurt too.  I think I learned it from him.  He was amazed that I would spend "that much money just to say I love you to an old man."  Of course I would.  Of course. 

I left, and before I even put my car in gear, tears were starting to slide down my cheeks.  Hot, salty tears in the cold winter air.

I went home and did the things necessary to prepare for teaching martial arts, and then I took the remaining roses - six perfect red roses - and drove to the cemetery.

I sat in the snow by her headstone, staring at the words inscribed across the top.  "And Jesus said to them, ye must be born again."  I cried.  I said some things that I pray she got to hear... even though I'm not sure exactly what people in heaven do and do not have access to.  Then I took the first rose from the cellophane.  I broke the stem, because her absence has broken so many hearts.  I laid it on the black marble base, and thought about that first Valentine's day without her.  The rawness and shock hadn't faded at all yet that first year.  I took the second rose, broke the stem, and laid it next to the first.  I remembered how that second year, Derek and I had clung desperately to each other and were living in constant fear that something would happen and we would have to know the pain Grampa was feeling.  The third rose, the third stem, for the third year.  That year, Derek and I celebrated.  We celebrated our love.  The fourth rose didn't want to break - the stem bent back and forth several times before it cracked.  A thorn pricked the skin on my thumb, and I bled one bright red drop.  That fourth year, I was starting down the road I am still on.  The road of admitting how broken and how hurt I truly was; not just about Gramma, but about so much.  The fifth rose broke easily.  The fifth year.  The fifth year slipped past; nothing happened on Valentine's day.  I forgot to call my Grampa, and forgot to call my dad.  I didn't even think to say anything to my husband.  It was like that rose stem - stiff and insignificant.

The last rose... the sixth one... made me cry the most.  I cried because this year, I have watched so many who professed profound and everlasting love hurt one another.  I cried because if Derek and I have the sort of love my grandparents had... if we are that way 43 years from now... I cannot even fathom being given such a gift.  I cried because my Grampa is hurting and missing her and loving her.  I cried because I feel like she is the best parts of me.  And those best parts are not gone, but they are hurting.  The best parts are damaged and incomplete.  I cried because I've been trying since the day she died to figure out how to live in a world where she isn't... and I still don't know.  I cried because I actually thought to myself "Gramma will understand how I'm feeling.  I'll just call her..."

Six red roses.  Red roses on black marble, surrounded by white snow.  Broken stems for broken hearts.

And above it all... those words.  "Ye must be born again."

I cried because none of this pain is permanent.  I cried because I am redeemed, and so was she... and so anyone can be, if they will accept it.

Tonight, I have that heavy, tired, blurry-eyed feeling that one gets when one cries too much.  Every once in a while, I pick up my camera and look at the pictures I took.  I may share some day... but for tonight, they are mine.  The moments were mine, the tears were mine, and the comfort God whispered to my heart is mine.