In Which My Body Hates Itself…..So we start a game of guess the autoimmune disorder.

“I hate my body.”  I know I shouldn’t. I know the Bible says I’m fearfully and wonderfully made….I’ve taught classes for girls about treasuring themselves as God treasures them. But, to be honest…between failed surgeries, more surgery scheduled, chronic pain and daily frustration due to my body being uncooperative with my life……. I hate it, anyway.

Apparently, my body hate’s itself too. My primary care physician ran loads of blood work last week so we can try to figure out if there’s an underlying cause to my lack of fusion… (2 failed ACDF’s in the past 18 months.) One of the tests he ran was a long shot. For auto immune disorders.

Bingo! We have a winner. Or a loser…. something like that. I feel like the poster child for this year’s MOPS International Theme: “A Beautiful Mess.” 

I’ll be having more blood work tomorrow to try and figure out exactly what auto immune disorder I have. Auto immune disorders are (basically) your body attacking it’s self as if it is a source of infection or invader. (Your immune system attacks organs, joints, etc instead of things like.. Strep throat. Sorry body.. my neck is not strep throat. You’re: Confused. Knock it off.)

So… now we play the game called: Guess the Auto Immune Disorder. Is it: Lupus? Ankylosing Spondylitis? Rheumatoid Arthritis? Hashimoto’s?   Right now- I have no clue. Just a lot of pain and frustrations, and really? No time for this. I have things to do, a life to live… and miles to go before I sleep.

Miles to go, Before I sleep.

I guess some of those miles will be walked in the company of an autoimmune disease. Fortunately- (For me) I’m not alone. I have several friends affected by auto immune disorders…. it’s good to know I’m not alone.. even here.

Dear Lord… I don’t get this messy season of life. I feel like every time I come up for air, a wave crashes on my head. I don’t LIKE this at all. But- I thank you for the doctor finding this new problem and trust you to keep guiding and healing through the wisdom I believe you give. I pray that I walk through this season with faith and in love… every day. Faith in your love for me… and in love for others….Lord help me not become so self focused that I miss opportunities to love others. Lord help me with the feelings of frustration, fear and pain. Help me to stay focused on you. I’m asking that you heal me and my husband lord…. but either way… we trust and walk with you. I love you lord….. But I’m not liking the plan right now… not at all. amen. 

⁷ Where can I go from your Spirit?
Where can I flee from your presence?
⁸ If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
⁹ If I rise on the wings of the dawn,
if I settle on the far side of the sea,
¹⁰ even there your hand will guide me,
your right hand will hold me fast.
¹¹ If I say, “Surely the darkness will hide me
and the light become night around me,”
¹² even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

¹³ For you created my inmost being;
you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
¹⁵ My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
¹⁷ How precious to me are your thoughts,^[a] God!
How vast is the sum of them!
¹⁸ Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

Psalm 139…. yes, Lord… Even here.

 

Posterior Cervical Fusion…. Prep. In which I’m getting ready for surgery, again.

I’m that person. The one who wants to know what to expect and how to prepare for surgery. Prior to my ACDF’s (2- c5-6 then 5-7 after the first failed.) I found videos, blogs, and lots of spine health boards with tips for recovery and preparation.

Yesterday we scheduled a PCDF from C4-T1. (Previous surgeries were through the front of my neck- this one is through the back.) Pain has been increasing and function has been decreasing since Decemberish… so it’s time to do the next thing. Problem is- I’m not finding much helpful information about this surgery. I’m scheduled for July 3rd.

So far I’m finding that:

1) It really hurts.

and

2) It really hurts.

That’s not enough information for me.

So- here’s my plan. I’ll be blogging the preparation and recovery as I can. There needs to be practical, accessible information for the next (woman- specifically) to find. So.. in addition to my usual posts….. you’ll be seeing some of these as well.

I have a little over 2 weeks to prepare. Here’s my basic plan:

Housekeeping- taking some time to do major cleaning while I can. And to prepare for the help I’m planning to have post surgery. (Planning on having a cleaning service this summer. Highly recommend for post surgery.) Stuff like: declutter and prepare for a more (temporarily handicap) accessible home. (My mobility will kind of suck for a while… and Cleaning services usually do basic stuff. Not Pick up and declutter stuff.)

Meal planning- Get some meals prepared in advance and into the deep freeze. (Yes- I know people will want to help… but I’ll feel better knowing I have some things ready;)

Family preparation: it’s summer. I plan on making plans to enjoy it as much as I can prior to and after surgery. I’ll also be making plans for my youngest so he doesn’t feel ripped off by yet another summer spent with sick parents. (Day camp stuff maybe? Will check into pool membership, (I’ll be able to sit by a pool:P) End Goal: we have a family tradition timeshare the first week of sept. We’ll be working towards getting there;) We need a vacation.

List making. I’ll be making daily household maintenance check lists for my guys to use during my recovery. That way they’ll know what needs to be done each day and can help. (Will actually just update what I have- I use flylady.net for home-management.) Grocery list prep. (basic staples)

    Personal preparation:

•  Nails, haircut and roots. (yes, these are things I need to get done before surgery. Pedi too, if I get a chance.I won’t be sitting in salon chair for a while. ) I’m also going to be eating extra healthy and exercising as I can… the better health you’re in before surgery- the faster your recover.

    Take care of medically related needs- I already set up my amazon wish list for the medical/rehab stuff I’ll need during recovery… shower bench, bed rail, stuff like that. I’ll order with time to get everything ready- together- installed.)  I also had enough blood drawn to drown a vampire. We’re checking to make sure there isn’t anything systemic that is causing me not to fuse.  Primary care physician is on top of that. Next stop: bone density test on Monday.

Sanity Preparation: (recovery=boredom. Boredom= cray cray.)

• Netflix cue/amazon instant video library maintenance. (I probably won’t be able to read for a while… too much pain/distraction. So your movie/ TV recommendations are appreciated.)
• Bookstore stock up reading plan (For when I can read;) Kindle is already stocked. But recommendations for that are good too;) Kindle is easier to read from post- surgery. Don’t have to hold it up.
• Project planning- I’m a knitter… lots of recovery time will most likely mean: knitting time. However- the posterior approach may make knitting very painful. Not sure. But will be ready. (patterns/yarn and needles will need to be accessible without bending/ twisting. etc.

Spiritual Preparation: 

•  Lots of prayer, worship and listening.

Work preparation:

• Get as much writing/ MOPS International work done in advance as possible. Be sure to alert anyone impacted by my “down time.” (will send out emails and probably set up an away message for my inbox.)  Computer time will be limited. (Can’t look down at screen post surg. Will be able to use social media.. phone probably…but we’ll see.)

Things already to go:

I already have this awesome mirror for once I can drive.

Already have a recliner with heat, massage and power recline. All it’s missing is power lift…. but I can do without that;) (recliners are a back surgery patients’ best friend. Besides Jesus, I mean.)

I promise tomorrows post will be something less medical… But- Like I said…. it’s hard to find info for this— and the next few miles I walk are in the shoes of a mom preparing for surgery… I know I’m not the only mom to experience that… so I’ll leave my footprints here… for the next mom to find;)

Dear Lord- so much to decide and do over the next few weeks. Please help me to be wise, to honor you and to not do more than I should…. Lord- work through the doctors, and be with any mom who is facing surgery and is trying to prepare…. 

 

In Which Letters From Camp Reflect My Own Prayers….

He had everything he needed. (Including underwear and socks for each day- which by the way-he never changed. Not once. Gross. I know. He showered each day, but slipped back into his undies faster than a formula 1 pit stop.(kids + public showers and change areas= torture. Just sayin.) under those panicky conditions I can almost understand. (I remember desperate locker-room prayers…”Dear Lord, please don’t let anyone see my junk.” The official locker-room prayer of every tween.) If he’s ever in the Guinness book of World records it will be for: least often changed underwear with the cleanest backside and most nagging survived.

But, he had them. Along with a smuggled against the rules flashlight. Cause I knew he’d have trouble getting to sleep.

And a dated note from me to encourage him each night. And bug spray. And sunblock. And 3 new books….and countless t shirts. And jeans. And slippers. He had it all.

He even knew that God goes before and with him everywhere…..we talk about that all the time…

And yet, that note says it all: “I can’t take it anymore, I’m homesick.”

A heartbreaking scrap of paper, shoved into an envelope in hopes that someone would hear his desperation. And rescue him.

It’s the only direct contact i received from camp. There were no cell calls. No texts. Not even an email. (With the exception of a daily summary email from the teachers. Which helped ME survive.) It was an adventure in preparing him….and then letting him go.

The letter arrived, after he did. It’s the only letter because it was written on the first night of camp. After that- he was too busy having fun to write. I’m convinced it was grace that it arrived after he did.

I’m sad he had a rough first night…. But, I’m glad the letter didn’t arrive in time for me to immediately climb into my car and go: RESCUE my BABY.

Because he would have missed out. He would have missed out on fun…..and on overcoming his fear.

The truth is: He could take it. He did. He even: had fun. So did I. Coincidentally, my husband was also out of town. It was a time for me to sleep in, watch movies on the big tv and maintain control of the remote. (I’m the only woman in the house- that’s a pretty rare event.)

And a chance for me to let go of (my false sense of ) control and trust God with my kid. Or try to. Let’s just say lots of prayer was involved, too.

There are moments in my life when my prayers sound a lot like Noah’s note from camp. “I can’t take it anymore. I’m homesick.” I can’t take chronic pain. I can’t take the seemingly never ending stress of my husbands ongoing cancer battle. I can’t take one more piece of home- machinery breaking down. One more car problem. One more decision about health care. One more thing.

The truth is: I feel homesick, too. For a time when there won’t be anymore crying…pain, sickness, stress, sin, parental struggle, marital struggle…..loss to grieve. Fear to confront or hope- disappointed.

I long for heaven. For a time when God will wipe away my tears and my body will be whole. (And I’m pretty sure a size 8.)

I wonder if my prayers of desperation are met by God with the same response I had to Noah…..”you did it! I knew you could! I’m sorry it was so hard that you though you couldn’t…..but I’m proud of you for continuing on, anyway.”

Fortunately, my prayers are faster than the USPS. My prayers of desperation are heard. God encourages through his people, his word and his creation….I listen. And then…. I do the next thing to get through..,.

Someday camp will end, and I’ll reminisce about all I learned and experienced.

I can do this. So can you.

“Dear lord, that note from Noah broke my heart. I’m so glad you got him through, and that he grew and had fun. I’m also glad that you are compassionate when I send up my own desperately scribbled scrap prayers ….thank you for being even here…. When I’m not sure i can take it anymore. Thank you for getting me through. I love you Lord and ask you to wrap your heart around all who read that feel the same…..in Jesus’ name, amen.”

Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord goes with you; he will never leave or forsake you.”

I’ve gotta be honest- the first part of the verse makes me feel bad…. Cause I’m not strong. I don’t feel courageous. I am sometimes afraid. But the second part? That makes it possible to get through thee first part;)

 

In Which 5th Grade Camp, Gives My Heart a Cramp.

“5 days, Mom!”  For just a moment, I thought maybe I’d been in a coma, missed summer and woke up right before Christmas… my kid sounded that excited.

“Till what?’ I asked. Starting to doubt  my coma till Christmas theory. I could see a neatly folded pile of laundry on the floor. If I were in a coma for months, I highly doubt any laundry would get done…let alone neatly folded.

“Camp, Mom.” My youngest replied. With just enough of an attitude to raise my mommy-respect radar but not enough to launch a disciplinary SCUD missile. (Sorry, ’80′s Cold war moment there.. I’m better now, I think.) Had it been followed by even a hint of  ”Duh.” I’d have gone nuclear. (Oops. Wasn’t quite done with cold-war references.)

That was 5 days ago. This weekend was a flurry of baking, funeral help for some friends and camp preparations. Camp preparations involved a lot of putting name and initials onto personal belongings. Let’s just say, I could not be more thankful for Mabel’s Labels.  (Nor could my kid- or he wouldn’t be able to distinguish his form other campers boxers… always bad.) Every morning he ticked off another day towards camp.

That is until this morning, when he suddenly didn’t look so excited. He looked mostly: scared.

“What if I can’t do it, mom?” Came the voice from a face tucked so far into his hoodie he could have been mistaken for a Jedi Knight or a ninja.  (I think boys use hoodies as cloaking devices when they talk about feelings. It’s as if they can say how they feel as long as you can’t see them. Whatever.) “Noah, You can do this. I know you can. You have what you need, and you’ll be with people we trust, who take care of you everyday. If you need us, we’ll be here.”  

“What about my inhaler?”  He asked.

“Packed and labeled.” I replied.

“My allergy meds?”  (He was just double checking, I’m sure.)

“All set just, like the note said”  

Then he stood up, dragged his suitcase and bedroll-in-a-garbage-bag because I couldn’t find a better “waterproof” container for it last night,  at 10:00 pm to the front door.  (yes, 10:00 pm last night  is when I finally finished packing him up. I may have procrastinated in the passing hope that he’d change his mind, or that the camp would be closed due to a water main break… or something equally prohibitive but not earth shattering like that….)

No such luck.

 

“Does Anyone have a Religious Problem with Sitting in Judgement?”

“Does anyone have a religious problem with sitting in judgement?”  I’m pretty sure the Judge thought it was a simple question. For me- it wasn’t. Granted- I tend to over think things. But when posed the question… I really had to ask myself: “Do I have a religious problem with sitting in judgment?”

Anyone who reads my blog knows that I strive to overcome bigotries small and large.  I am passionate about grace. (Mostly because I’m so thankful God is gracious to me. I need it. A lot.) I am constantly writing about, thinking about and challenging Christians for being judgmental. Mostly: myself.

But Wednesday- was different. A new experience for me: Jury duty.

For which I thought I had a “get out of jury duty free card” hanging around my neck. (Neck brace- due to failed cervical fusion. Not my most fashionable accessory- but it keeps my head from falling off… so yeah. it works.) Still. I was chosen.

Wednesday my name was: Juror #12.

Which is when that prickly question was posed: “Does anyone have a religious problem with sitting in judgement?”

The question followed a series questions like:

• Does anyone have strong feeling about guns that may influence your judgement in this case?
• Does anyone know the defendant, or anyone being called to testify?
• Does anyone have a medical or other cause that would affect your ability to to sit in judgement? (Yes- I got called out on this one- to which I answered: Well. I’ll be uncomfortable… but I’m always uncomfortable. I should be fine.)

I hesitated to answer the religious problem question. What the judge was actually asking was: Does anyone have a religious problem with sitting in LEGAL judgement on this trial?

Which, I don’t have. Because:

 

CVS- not just for drugs… Now dispensing: mercy and kindness.

Phone call from kid crying- due to migraine. Check.

Bank. Check.

Kid picked up from school due to migraine. Check.

Cash paid for camp. Check. (See # 1- But-not actually a check- the school wanted cash. ((Did you know that still exists?) Which would have been fine, if I knew my PIN number….Which:  I don’t. Which also would have been fine if I had a physical bank… and could have cashed a check. But , we use an online bank…. so: not so much. UGH. )

(Yes. I said I went to the bank AND that I don’t have a physical bank. After a 20 minute phone call with the online bank of doom- I was told I can get a cash advance on my credit card at any bank. BUT- that I could be charged. They didn’t. But I would have paid.- Also- new PIN is being sent. Don’t judge me. 1) I have a hard time with numbers. and 2) I’ve received 3 new cards/ pins in the past 12 months. BLAH.)

Anyway:

Phone call to schedule pediatrician appointment. Check.

Phone call to schedule genetic counseling/testing appointment for hubby- Check. (Cancer= enough appointments to baffle Google calendar. Justsayin. A lot.)

Trip to CVS to pick up allergy meds and energy drinks with migraine-y kid in tow…. Check.

Except- almost not check.

Because CVS is where I almost broke my neck. (Can you do that while in an actual neck brace? Let’s just say I don’t want to find out…)

 

When there’s nothing there. God still is.

Quiet. It’s very quiet at the Cancer center. They try to cover it up with classical music playing softly through invisible speakers constructed by some medical 007 musical research team. But, even high class, spy created music cannot drown out the quiet. The quiet keeps growing. It gets louder with every person who walks through the door. The quiet grows in the hush of emotions being held  in check. The quiet is the sound of the tension between managing fear and hope.The quiet is the holding of breath before the breaking of news.

I am: not quiet.

In trying to keep myself from being driven mad by the quiet-(And driving everyone else nuts in the process-)  I tend to pace, knit, listen to music or books on my iPod , read and or wander, while we wait. Sometimes all of the above at the same time.  Trust me. But it’s not just an abundance of nervous energy.

The truth is: I’m looking for God. I’m desperate for a reminder of his presence in this place. In the quiet.

Most of the time- I find something. A word. A visual. Something. A tiny nest of peace found in storm of anxious silence.

Last week- I found: nothing.

I walked around the corner. I looked at every piece of art, (Art therapy is big at cancer centers. Gotta love that.) expecting to find some little reminder. A bird. A nest. SOMETHING. I found: Nada. Nothing. Pretty, challenging and intriguing stuff. But: NOTHING.

I did the magic bible trick-(Come on- we all know the magic bible trick- it’s when you ask God to say SOMETHING and then flip open your bible like a leather magic 8 ball and “claim” what is written there as a personal promise.) I landed on the blank leaf between old and new testaments. I tried the spiritual discipline of iPod shuffle. (Same deal- just with your iPod.) A random Lascivious Biddies song popped up. I feared my ipod would spontaneously combust due to some “Nothing but classical Music” cancer center policy that I probably received a copy of, but never read. (Cancer= a lot of papers. Like- if we stopped printing so much rainforest devastating cancer information paper- we could find the cancer cure- amount of paper. Justsayin. it’s a  lot. I don’t read it all. Of course. )

Just: