Tuesday, April 23, 2013

Baseball and Pheresis

That's my boy!

Now those are two things you always think of together, aren't they?

Yah.  Jacob had baseball practice last night...they all had to be in full uniform because they were getting team pictures done too (and of course individual if you wanted it....so I of COURSE got the key chain, the 5x7 (and one for you mom), the button, the team photo....)  Jacob is just SO stinking cute out there!  Half the time it's like the Bad News Bears.  But so precious.  (Except for Chuckie... see yesterday's post...)

But the kids are just darling.  There are a couple who are pretty good!  They can throw well... Jacob bats really well...and he's a lefty, so he's a good asset.  But of course I'm his mother, so I'm going to say that!

Tomorrow is pheresis.  I just start to feel better from the Hideous Illness that befell our family towards the end of MARCH...now, I get to go tomorrow to get all my blood sucked out and feel like crap so I can feel better again.  YAY ME!!

Or not.

Plus, Jacob is going to miss his last practice on Friday because I have an appointment in Grand Rapids, plus pheresis, so we'll never be back to Allegan by 6.  And his first game is Monday already!  They've only had a handful of practices because it's been so rainy....  But it will be fun.

They have a really great coach...Jacob loves to help him.  Got to talk to him a little bit about MG, as he asked what treatments I was receiving. (I told him Jacob wouldn't be there Friday because I'd be in the hospital in Grand Rapids.) He asked really intelligent questions, and it was cool to have just a casual but informative discussion about MG.  Spread the word!!

So I should be fine for Monday's game...Doug can push me in a wheelchair if not. I wouldn't miss it for the world!

Monday, April 22, 2013

The Drug I Hate to Love

Prednisone.

Evil in a little white pill.

Moodiness.  We're not talking run-of-the-mill-PMS moody, we're talking zero to bat shit crazy in 1.5 seconds.  From "Oh what a beautiful day" to "If you say that one more time you are going to regret it for the rest of your life" in the blink of an eye.

From, "Look at my sweet boy-child out there playing ball, having the time of his life" to "If someone doesn't control their obviously A.D.D. potty-mouth bad-attitude disrespectful insolent obnoxiously heinously out of control spawn, lasers are going to blast from my eyes and disintegrate him" in 2.2 seconds.

Coach: "Use your glove to stop the ball."
Said Above Described Monster-Child (screaming): "Why?  I'm gonna use my feet."
Stomps and screams to the back of the rotation, "I HATE BASEBALL!"
Coach (next time wonder boy was up): "Use your glove!"
Chuckie:  "I'M GONNA USE MY FEET! I HATE BASEBALL.  STUPID BASEBALL.  CRAPPY CRAP BASEBALL!  AHHHHH!!!!"
Coach:  "Settle down!"
Spawn:  "Why?  I HATE BASEBALL!!"

I thought my brain would implode.  Thankfully he was not in Jacob's rotation, so I didn't have to break any bones deal with him talking to or around Jacob that way.  All I can say is that if I had been subjected to that rotten little imp for another 30 seconds....Armageddon.

So what else...oh yes, one of my favorite side effects.  Hunger. So extreme...cravings...ridiculous cravings.  Not like, "Gosh I'm a little hungry, I could use a snack" hungry, but "I'm going to eat this cupcake after this box of crackers and half a pound of cheese and ham slices with homemade bread at 11PM" hungry.

I've already stripped the bark off the mulberry tree with my bare teeth.  Good thing we have lots of other trees around.

It's insanity.  So why, you ask, would I put this psychotropic in my body? 
psy·cho·tro·pic
[sahy-koh-troh-pik] 
adjective
1. affecting mental activity, behavior, or perception, as a mood-altering drug.

So I can breathe.  Not so I can breathe better, or so I can run, or so I can be strong, or so I can breathe like a normal person.

But so that I can breathe and not DIE or end up in the hospital.  Isn't that fun?

I try to keep what I can from my family (Doug and Jacob mostly).  I mean, I know Doug understands because we've been down this road before.  And it IS a temporary increase and then taper.  But holy crap.  I had forgotten the madness of such a tiny pill.  Here I am at 11:38 PM NEEDING to get something out of my system before I go to bed so I don't lay there and bawl.

Crazy bad drug.  But without it...I'd be a goner.  And so we carry on in crazy-town.  Alllll aboard!

Saturday, April 20, 2013

Catching Up

I have had the craziest year.  Seriously.  Even before that. I think it started in November with the first round of pneumonia...coughing up blood... I remember I started the year off with a bang by getting a chest x-ray on my birthday.  I've been on antibiotics more this year than I have in the last 3.  I can only take one that I know of, so here's hoping my body doesn't change its mind again!!

I've had trach troubles, tummy trouble, taking care of a sick boy while having 2 wonderful visitors (THE highlight of my year)... And my office is STILL CLEAN!!  Whoooooo!

But it gets downright discouraging!  My goodness.  It's been one thing after another.  Plasmaphersis, CT scans, nodules in lungs, pneumonia, pseudomonas, strep pneumonia....THEN after taking care of a sick boy, I got to take care of a sick boy AND a sick husband, and then I got it after all of that!

Finally had my ENT appointment yesterday, and he's thinking a longer trach tube will do the trick.  Right now my natural, God-given trachea is flexing its muscle memory and trying to spit the dang thing out.  That's why I can't breathe half the time....because I'm breathing through an opening about the size of 2 1/2 coffee stirrers.  (Why, yes, I did measure...)

I'm behind on my writing, I'm behind on homeschooling, I'm behind on this 40 day prayer thingy I'm doing with Tracy...I just feel like throwing in the towel sometimes!  It's like, man, can I just catch a break or what???

Where is that Calgon when you need it??

However.  Because I serve a Living God, and because so many of my friends, my family, my family's friends, have been praying for me (unceasingly I suspect!) I am still here, I'm still kickin' (albeit weakly)...and I am thanking God for all the amazing things in my life.

A totally wonderful pick me up in the form of an unexpected card in the mail.

A totally wonderful (actually TWO) packages from a wonderful blogger friend, that was so gracious and undeserved.

An awesome visit from 2 precious college friends. 

A clean office.

Someone sending a friend of mine money so I could get my whole house cleaned TWICE!

There really is so much to be thankful for.  I DO have a lot going on health wise.  But I also have so many blessings in my life.  So today, let's all try to focus on the positive.  Even if it's that you're still alive.  Because I would miss you if you were gone.

Saturday, April 13, 2013

Random Letters Volume 306 ( Or Something)

Dear Nasty Cold/Flu Bug,

You have FAR overstayed your welcome.  You need to leave.  Like now.  You cause my chest to feel like needles are being ripped out when I cough.  You make me shove kleenex up my nose and drink tea like a little old lady.  May you go far, far away and infest all the people who have ever given me a hard time or treated me like crap.  Yup.  I said it.

Sincerely,

SICK of being Sick!



Dear Dreams,

I don't know where on earth you are coming from, but you are strange!  From having lunch with a friend who has passed away to a friend I haven't seen in forever to 2 old men millionaires (I can't remember what THEY wanted) and a gigantic house....the snow, the germs...all in one dream.  No wonder I'm tired all the time.  Go find someone else to invade...I want some nice, happy, uneventful, restful dreams!

Sincerely,
She-Who-Dreams-Too-Crazily


And just because I cannot resist.... (Thanks to a friend Doug works with for this one...)
Dear Dude Who Drives This Truck:
Really???  Sick, but Hilarious.

Sincerely,
Too Sick to Laugh, But Otherwise Would

Wednesday, April 10, 2013

From Beth Moore

This is an original blogpost by Beth Moore about the tragic death of Rick Warren's son, Matthew.  I think EVERYONE should read this.  She makes a wonderful point.  I am subscribed to her blog so I get the emails, so I copied and pasted here so you can read it, or just click the link below to go to her site.  Regardless, please read it.

http://blog.lproof.org/2013/04/sadness-and-madness.html

"Saturday shortly after noon, I filled up the dog bowl on the back porch with water and pitched dishes in the dishwasher so that I could head out with Melissa for a bite to eat and maybe a little shoe shopping. She’d spent the night with Keith and me in the country and we’d had a lazy Saturday morning over coffee and conversation. I’d set out my purse and keys and decided to wipe down the kitchen counter before we walked out the door. Just as I sprayed the cleaner and grabbed the dishtowel, Melissa walked in staring at the screen of her phone with the oddest expression.

“Mom, I don’t know if it’s true or not but I’m seeing references on Twitter to Rick and Kay Warren losing a son.”

She was ashen. My stomach flipped and, over the next few minutes as she read to me bits and pieces of breaking news, we feared the worst. I felt a hot sickness in my throat. My relationship with the Warrens is the same as most of yours. I have simply been served and led well by them. Although I had the joy of ministering to women on the Saddleback campus some years ago, my stay was brief and our schedules were wrapped entirely around the event. I have not had the opportunity to get to know the Warrens in the way that personal friends know one another but I always knew in my heart that I’d like them so much. We’re similar ages and in similar seasons with our families. Meanwhile, I have  loved them and esteemed them in Christ as faithful and mighty servants of the living Lord Jesus Christ. And quite possibly, among the mightiest to ever serve this generation.

Within an hour of Melissa walking into the kitchen with those first pieces of news, someone very close to the Warren family confirmed the tragedy on Twitter. We were heartsick and not for media personalities or even public servants. We were heartsick for a family of real people with breakable hearts. And we wept. Many of you undoubtedly did as well.

An odd mix of feelings overtook me with increasing force through the afternoon and into the early evening. The sadder I got, the madder I got. Mad at an astonishing satanic force that stoops viciously and swoops in unscrupulously to attack children and to prey on their weaknesses as they grow up, shooting so relentlessly at one spot that they can barely get to their feet between arrows. I’ve been that child and many of you have, too. Madder still that the devil in all likelihood delights in nothing more than targeting the children and dearest loved ones of true servants of God. Nothing tries our faith like the suffering of our children. At the end of the day, our faith is what the devil is after most. Without it, it’s impossible to please God. This is why Paul could say with relief nearly palpable on the page of his final letter, “I have fought the good fight. I have finished the race. I have kept the faith.

We’ll all finally make it to our finish lines but the cliffhanger along the way will be this: will we keep our faith? That isn’t the same thing as keeping our salvation. I don’t believe my salvation is something I can give back. I received it by grace through faith from Christ Himself and my works don’t secure it no matter how my woes obscure it. His grip never loosens. Nothing can snatch us out of our Father’s hand. What’s at risk is our active belief in who God says He is, what He says He is like, and what He says He can do.

Is He good? Is He faithful?

So the enemy sets out to knock the feet of our faith out from under our walk. And there is nothing more effective toward that end than targeting the ones we love most on this planet.

I don’t say that to scare you. I say it because I believe it is the hair-raising truth. No, we are not abandoned here as victims on this damaged sod. We are not abandoned at all. Our God is with us. The Spirit of His Son is in us. We are more than conquerors through the One who loves us. We are not at the mercy of Satan. We are at the glorious, life-breathing mercy of our Lord Jesus Christ, a mercy that leads, as Jude 21 says, to eternal life and will ultimately spill like a river into a sea of reality where no sufferings of our past will compare with the glory of our present. In the meantime, greater is He who is in us than he who is in the world but make no mistake. This is a vicious world we’ve been left to serve. One God still loves or we would not still be here.

And then, in that mixture of emotions Saturday afternoon, I got madder and madder at the bullies in the Body of Christ. I thought how much it turns out that the Warrens have been through personally and, if they are like most leaders, all the while putting out fires and putting up with a bunch of trash-talk from people who would call the same Jesus Lord.

God help us. In the words of James, These things should not be so, my brothers and sisters.

I don’t believe one of us here in this community thinks that leaders should be immune to questions, constructive criticism, and accountability.  That’s not the kind of thing I’m talking about here. I’m talking about bullying. There are Scriptural means for going to a brother or sister to reason with them about matters we genuinely consider to be off base, misleading, or in error. You and I both know that much of what happens out there in public forums is the furthest thing from biblical.

It is slander.

I went on a walk through the woods Saturday late afternoon and did something I don’t often do. I cried angry tears. I got so mad that I could have hit somebody. I kept thinking how believers attack one another and sling stones at each other like the other can’t bruise or break. And all the while that person may be in so much personal pain that it’s nearly unbearable. I’m not transferring this to the Warrens. I do not know them personally. I’m telling you what I know to be true about most people out there. Most of us are in significant pain of some kind. That doesn’t mean defeat necessarily. It just means pain.

Life is hard enough without hatefulness rife in the Body of Christ. We are called to carry one another’s burdens, not pile relentlessly on top of them. We can still hold one another accountable. We can still ask questions. We can still disagree. But we can do it with respect.

I’m sick of the bullying. The mud-slinging and the meanness. I’m sick of careless, idle words thrown out there in the public square and professing believers in Christ standing on the necks of their own brothers and sisters to sound smart and superior. As if it’s not enough that we are surrounded in this culture by Christian haters, we’ve got to have our own hater-Christians. It’s insane.

When we turn people into caricatures, everything’s game. The moment we depersonalize them, our consciences harden and we can mock and slander at will and have a blast doing it. Snide blogs and tweets and Facebook posts about various leaders can also be effective ways to jump in their spotlight. Bullies aren’t just mean. They’re self-serving. They’re platform-hunting. They have to borrow one to perform.

No, I don’t think that saying all of this will change it much but some things still need to be said. Sometimes we need to speak up and call something wrong. There’s a bigger issue in the Body of Christ than immorality. It’s hatefulness. If the greatest priority Christ assigned to us was love, the gravest offender is hate.

Just about the time cynicism threatens to overwhelm us and turn us into the very people we can’t stand, genuine love – the real thing – erupts right here on this earth like concrete breaking open to a spring. Compassion and tremendous affection are pouring forth from the Body of Christ for the Warrens right now. It is right and it is lovely. We have been served well by them and have learned so much from them. To respond with expressions of love, comfort, and intercession is our honor and privilege. We must and we will.

But even now at the hardest moment of their lives the Warrens can teach something vital if we are willing to learn. Their heartbreak demonstrates what has always been true but has never been more profoundly overlooked: these who serve us publicly also suffer privately. They are not caricatures. They are not just personalities. They are people living on a painful planet with the rest of us.
The Warrens will come forth like gold. The enemy will not win. They will fight the good fight. They will finish the race. They will keep the faith.

I love the Body of Christ. I don’t want want to get cynical. I don’t want to sit around and hate the haters or I become one. But this morning I just want to say this. We can love each other better. Let’s do. People have enough hurt. Let’s be careful with one another."
Beth Moore

Wednesday, April 3, 2013

Holy COW!

And in this case, I do mean cow, as in moo.

I so don't belong on a farm.

Our biggest cow, Oats, a black and white cow (can't remember what kind...I don't like to get too close to my food, although yes, Jacob did name them...) started leaning way over the electric fence to graze in the yard.  I guess the grass really IS greener on the other side. (ba-dum-bum)

But this gigantic moo-cow is leaning over the fence, pushing against it, to grab little green clumps of grass.  I'm thinking, that thing is going to break the fence, (while Doug is at work, of COURSE) and I'm going to have an 1800 pound animal rampaging frolicking around my yard, playing chicken with the fast moving metal boxes in front of the house.  (Cars, for those of you who don't speak cow).

I'm thinking, either this grass is AH-MAZING, or the electric fence is not working, OR they have become immune to it.  Made me very nervous, I will confess.

So one day, I'm looking out the window, about 4:00ish, and what do I see but Oats, up in the pasture closest to the road, tossing around and trying to CONSUME the plastic snow fencing Doug had wrapped around my spirea bushes.  Well, I watch enough animal planet to know that if a cow eats plastic fencing it's going to die.

Of course Doug is not home yet, and although it is nearly APRIL, it's below freezing out.  So I yell to Jacob that we have to go save the cow, and grab my parka.  He's got long sleeves, sweatpants, socks and boots on.  I, do not. Since the house is always uber warm from the wood furnace I usually have shorts on, as I did this fateful day.

So I'm going outside while trying to zip the overly warm winter coat I never wear, and the zipper doesn't work.  As soon as you put the plastic thingy in the zipper thingy, it splits.  Nice.  So, I have a coat blowing around in FREEZING cold weather, trying to figure out how to get the snow fence away from the cow and the cow away from the *electric* fence!  So I run at it shaking my arms and making boogedy-boogedy-boo noises, and it runs like a scared rabbit.  Albeit a bit more clumsily.

So thank God Jacob knew how to turn the electric fence off (why would I?  I'm not a farmer!), so I had to walk down to the big barn, push the button in and walk back up the hill.  If you've never been to my house, imagine the MOST uneven, hole-filled nightmare of a yard, and trying to walk up it after you've had 6 too many to drink and you're wearing roller skates.  That's about how easy it was for me too.

So I get to the top, and I had a shovel I was going to try to reach in and snag a corner of the fence with to pull out.

{crickets}

Yeah.  THAT worked.  So I step on the barbed wire (with my heavy duty crocs), and pull up on the middle wire so Jacob can scramble through and get the fence and get back out.  Don't worry, I was standing there freezing my arse off with a shovel ready with my "boogedy-boogedy-boo" should the cow return.  We were PERFECTLY safe.

So we retrieved the fence, I walk down the drunken-roller-skate hill, turn the fence back on, and walk back up said hill.  I JUST reach the porch when Doug pulls in.

REALLY?!?!?

So the next day, the dang cow is pushing against the fence with all its girth, EATING my spirea bush!  It was half GONE!  I start beating on the window, because cows are really scaredy cats.  Doug is yelling at ME because I'm about to break the window.  I'm like, "I am trying to save my spirea bush!!  They are FINALLY growing!!"

Well, it turns out that a section of the fence was actually down (probably an errant deer) so there never WAS electricity running to the fence, which is why the beast could practically bust through it!  Doug found and fixed the broken fence, and order has been restored.  I just SO wish I could have seen the look on the cow's face the first time it went after my bush after the fence has been fixed!  Muuuuuwwww---hahahahahaha.....

Yes, I know I'm mean. So call PETA on me.

Tuesday, April 2, 2013

BUGS!

Not the crawly kind, although certainly still a bit creepy.

As some of you may know, it has been a rough winter for me and my lungs.  Lots of coughing up of blood (I'll spare you the pictures....really.  I took them to show the doc because the questions they ask about it are just crazy.), and pneumonia, CT scans... oh boy!

Last week I did some sputum cultures.  That's the technical jargon for hacking through my trach into a cup so they can check it for bugs.

Well.  The doc called back today and lo and behold, there were indeed some "bugs" in there.  Three to be exact.  The first one is Streptococcus pneumoniae.  Yeah, you can google it if ya want.

The second is pseudomonas. That's a pretty good link, if you want to know.

The last one is proterus.  Seems pretty tame compared to the first two.

Anywho.  So I guess the idea is that these bugs (bacteria) can colonize in my lungs without me being actively sick.  And if I get sick, it could be one or all of these charming, uninvited guests that is the culprit.

And apparently, because of my health status (or lack thereof) these are not things I will ever be able to get rid of completely, medically speaking.

But God is Mighty, and Powerful.  He is my Strong Tower, My Refuge, and My ever-present Help.  He is in control, and I'm good with that.

Monday, April 1, 2013

I Really Am Still Here!

I had the blessing and privilege of seeing 2 college friends this past week!  And they both came to my house!  My friend Tracy came up from FLORIDA, and my friend Mary, whom I saw in Frankenmuth in January, came down for a night as well!  It was AWESOME!

We were very, very busy!!  Tracy got here last Tuesday, and Mary came Wednesday.  Wednesday night we went out to Grand Rapids (ooooohhh!!!  The Big City!!) and went out for dinner and shopping. We had SO much fun!!

Also, the girls helped on Thursday to clean my office.  It was a PIT.  Then Mary, sadly, had to leave Thursday, so Tracy and I finished it up Friday and Saturday.  It took the better part of THREE DAYS to get this thing done.  BUT.  It's AMAZING!
Look!  I have a FLOOR again!!!  Everything is stacked, labeled, in its correct place.... FABULOUS!  Never underestimate the power of a label maker.   However, I DID underestimate the TIME it takes to label things!!
The black thing leaning up against the wall is a frame...we got that hung up as well!
My incredible work station!!
I actually have a desk!!

More of my gorgeous, EMPTY floor. 

HUGE thanks to Tracy and Mary for helping me, and what a wonderful time we had.  I'm sure they'll be more posts....especially about tin fishes!!!