It Just Is What It Is

I’m almost afraid to say this because it will inevitably cause something else to happen, but for right now… in this moment… I’ve stopped getting worse.

* knock wood if you got it *

And for right now, not getting worse is good enough.

My friend Nicole gave me a [loving] talk the other day about the fact that, in my disdain for complaining, I actually never talk about my life in the present tense at all. And she’s right. [don’t you hate it when that happens?] I tend to talk about things after I’ve worked my way through them.

The biggest part is that I don’t want to complain… I don’t want to hear myself speak aloud all the troubles if I can’t follow it up with what I’m going to do about it. For me, it always seems like I’m just adding weight in my heart when there are problems and no solutions.

It’s complaining without purpose. And I just really don’t like how that feels.

It’s also difficult because, in truth, the direction my life is heading is simply not pretty. And talking about what that means for me, if I look at life realistically, means a lot of loss. For me to process that I have to give myself a chance to sit for a moment and look at that reality. To acknowledge it, to mourn it, to let it go. That’s hard for people to listen to because their first instinct is to tell me I shouldn’t look at the future, I can’t give up hope, I can’t let myself go there. But I have to go there. It exists and pretending it doesn’t isn’t going to make it go away.

Trust me when I tell you I have hope. If some miracle happens to me tomorrow I am going to embrace it with every fiber of my being. But I also have to equally embrace the not-so-fun-stuff. If this is my life, if this is where I am at, then this is where God is at, too. And if I’m wasting all my time and energy trying to pretend the future doesn’t look like it does, then I’m wasting God’s time as well. I know that I need to face what life is looking like now so I can accept it, hand it to Him and find joy in the midst of it. It would be nice to go around it, but the only way is through it.

It just is what it is.

To answer the question some of you asked in the comment section: Yes, the past three and a half weeks have been like this simply because I left the house that day.

I have to tell you, I was prepared for it to be rough but I had no idea how bad my body and it’s reactions had gotten. I think because I have been so diligent about isolating myself and keeping things consistent for my body and health, it just wasn’t clear to me that I was still getting worse despite the lack of exposure. There was still some piece of me that thought it would just be a hurdle. I was still thinking of masks and oxygen and ways to get around this, but there is no way around this. I am completely and totally, from here on out, confined to my home.

No open doors or windows, no sitting on the patio or letting Riley go for a walk. No friends’ homes, no movies, no church, no outings. I won’t ever again sit by a bonfire to watch a sunset. I won’t smell the fresh dew on the grass in the early mornings when the air is crisp and the lake is smooth as glass. No weddings or funerals or graduations or school plays. More than all of those things put together, I think of my nieces and nephews – the lives they have ahead of them – and my heart aches as I become a supporting player watching from a distance.

But it is what it is. What I’m going through now, because I left my home for a few hours, is something my body just can’t do again. I was expecting the level of pain from the extra movement and short ride in the car, but the issue with my lungs/body reacting to everything and anything it was exposed to was far more than I imagined. And the problems with the resulting medications has simply added to the intensity of it all.

Hence, the long few weeks. I can’t tell you how much I appreciate all of you being flexible with me not posting everyday. I miss being on here so much, but it’s been a weight off my shoulders to have the freedom to just sit down and write when I feel I can. The steroids and breathing treatments and other meds have a lot of side effects for me, which means I have to really just go with the flow of the moment. The most obvious side effect is that I now so closely resemble the Stay Puff Marshmallow Man from Ghostbusters I’m waiting for offers to star in the remake. I’ve expanded so quickly that at some point everyday my skin actually aches. Add on the shakiness, the sleeplessness, the exhaustion that fights the constant feeling of being antsy, the hot flashes and the weird feeling of a slight vibration all through my body all the time, and you have the parts that I can learn to live around.

It’s the other stuff that has made this hard. Because of my disease, I have gone off and on steroids a lot. And because of my disease, it takes larger doses of steroids to take care of the problems. We try to not stay at the higher doses for longer than absolutely necessary because each time I go on and taper off, the rebound pain that comes afterward is more intense. So, after the two week mark this time, I tried a small step-down of the steroid. My lungs weren’t great, but I wanted to see if the small change would make a difference or if they would stay stable. Two things happened. One, my lungs didn’t stay stable. Two, my body went insane.

The next morning I woke up to a lot of pain in my knees and I could barely hobble behind George to get to my meds. It got better after I took the steroids but never went away, and would intensify before my next dose. It wasn’t fun, but it honestly didn’t alarm me… weird pain happens to me all the time so I stayed at the lowered dose that day. And then the next morning I woke from a dream where I was screaming in pain, to realize I really was. I had waves of pain from my hips to my toes and struggled to get up and out of bed, only to put my feet on the floor and discover I couldn’t put pressure on my legs. I couldn’t walk. The pain was too much and my muscles wouldn’t hold me… I got myself to the walker and sat on it, pushing myself on the walker to get my meds, all the while in more pain than my brain could process. It seemed to take forever and, in a word, it sucked.

I took my meds and waited for them to kick in and quickly realized that I should not have decreased my steroids. Yeah, I catch on quick like that. So I’m back on a higher dose and take it during the night as well to make sure it stays evenly in my system. Before you all start to type frantically in the comment section, I promise you I’m perfectly safe in my home, I have my Lifeline button if I need it and I have no intentions of doing anything different without being prepared on all fronts. Promise. :) I am, admittedly, dreading what will come when my dose changes, but whatever happens I will be thoroughly informed of what to do by my doctor and will be ready.

The reason I’m telling you about it is because so many have emailed to ask how I am and what is happening here, and I feel like I owe you the truth even if I don’t like how that looks. And I don’t like how it may worry you. And I don’t want you to feel bad for me. I’m also telling you so you can understand what I mean when I tell you that how I feel changes frequently throughout the day and makes writing consistently a bigger challenge than usual. But you should know the first thing I want to do in my moments of strength is to sit at this keyboard and type for a bit, even if it did take all week to put together this long post. :) And it’s lovely for me to know that you’re still out there when I do.

So, life has difficult times. That still doesn’t mean they are bad times… it just means we have to deal with what is in front of us when it’s in front of us. For now, I’m adapting to this challenge. I’m taking my moments that require rest, taking my moments that require me to challenge myself and push, taking my moments of sorting through the realities and taking my moments of joy in the middle of it all.

Oh, and taking lots of moments with this face:

So, now you know my day-to-day… hope you’re not sorry you asked. :) Know I really am dealing with this ok and my goal in life hasn’t changed: I’m simply going to fulfill God’s plan by living the best life I can with what I am given.

It just is what it is.

Riley Speaks…

Someone is having withdrawals from his blog mascot fame.

I told him NorEaster asked for photos of him in the comment section today and he seemed to perk up a bit…

Then he started barking orders.

Obviously he’s been thinking a lot while we’ve been laying around, because he had some big ideas for me…

Let it be known that when the alpha speaks, I listen… so here’s another song I recorded back in the day:

04 Turn and Love  by  gitzengirl

Thanks for being so patient with me, guys. I’ll work on a post to update you on life in general… I’m just realizing while putting this little one together that it’ll have to be done in spurts instead of my normal way of writing [which usually consists of me sitting down and babbling until I’m done, otherwise known as rambling], but I’ll do my best to get one up by Monday.

In the meantime, enjoy the song and I hope you have a GREAT weekend…

Miss you all!

Hit and Miss

Wassup, peeps?

Ok, so I hate to do this, but I think I’m going to have to be a hit-and-miss blogger for a little while. I wish I could say that things are getting better, but between some side effects and pain and my lungs taking longer than I thought to bounce back… I’m kind of getting my butt kicked.

I want so much to be on here writing everyday, but how I feel changes multiple times a day and I just know there’s no way I can be as consistent as I’d like to be. And the last thing I want is for you all to worry if I just randomly don’t post something one day!

So, I’ll really try to pop in as much as possible… maybe work on some blog-peep question posts that I can put up from time to time just to keep in touch and see your faces. [So feel free to fire away with questions in the comment section if you have them.] This way you don’t have to worry if I don’t show up some days, and will hopefully be pleasantly surprised if I show up a few days in a row.

Sooner or later I’ll get back to my 12:01 AM posts every day, but until then don’t worry if I disappear for a minute. Just trying, literally, to catch my breath.

Great Minds

This is one of my favorite faces on the planet.

I took these photos a few months ago when Mr. Tyler came with his Grandma Linda to bring my groceries. It’s handy having my godson be the grandson of the woman who brings me groceries every week. Definitely improves my chances of seeing him. :)

My spunky Tyler is a boy with an imagination… and he definitely inherited his mom’s gift of telling a story. Just like Susie, he knows how to share the details whether he’s relaying something factual or just letting you know his latest big idea. In this case, he had big ideas about the war he brought along with him to set up. His Grandma and I were given very definite instructions as to how to move the soldiers, what the guns should sound like, and who was supposed to win in this epic battle.

And while I always knew he was smart and cute, I was blown away when he started telling me that each “robot soldier” had 100 lives, and that each bullet only killed ten of those lives. He then proceeded to fire bullets and subtract by 10s, keeping track of each soldier and how many bullets they had left before the end of the war.

He’s a preschooler. Subtracting by 10s. In his head.

As his godmother, I would like to tell you he gets it from me, but not even I can pretend that anything having to do with math and numbers could be because of my influence. So I’ll just take credit for the imagination part and chalk the rest up to good genes.

Of course, one part of the scenario his imagination didn’t figure in was the enemy dog combatant…

… which may have caused us to start over from scratch a few times.

I’ll give you one guess as to who was left standing when the battlefield cleared… smirk and all.

Brought to You by the Letter C

I’m going to cheat a bit today if you’ll all indulge me.

I think between the meds, the trouble breathing and the whole I-can’t-remember-what-sleep-feels-like thing, it’s been hard focusing enough to write anything that might actually be worth reading. But since one of the suggestions for a “C” topic was cars I thought I’d share my most interesting car story with you that I wrote in one of my very first posts. I figure most of you haven’t read it yet anyway and it might be good for a chuckle today!

Do still leave a “D” topic suggestion for next week in the comment section… I’m determined to get my mojo back this week and will be posting some new stuff starting tomorrow. I’m sure I will be ready to write something Delicious for next Monday!

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Floods, Fires and Cars, Oh My…
[originally posted June 10, 2008]

The storms and rain have been so constant and unrelenting this year, which means we are having flooding problems in my town. The news just broke in saying there is a mandatory evacuation for downtown Cedar Falls, showing video of the levy and large numbers of people sandbagging in the hopes of keeping the water at bay. They are warning people to be prepared that we may lose electricity and our water supply, and keep emphasizing that the water levels are going to be worse than the flood of 1993.

I was in college at the time of the 1993 floods, and when you're younger everything seems a little less dire, doesn't it? We lived a few streets down from the Hill, which is where all the local college bars are located. One night, as we watched a river of water flowing down the street, my roommate Shaun and I had the brilliant idea of putting on our swimsuits under t-shirts and shorts and walking through the rain to the bars. It took all of three steps to lose our flip flops and, being the bright college students that we were, we ran the rest of the way there barefoot. How we didn't step on something that required a tetanus shot is just pure, dumb luck... and it was a ridiculously fun night.

That was the tame part of my flood experience that summer. The flooding in Ames was dire as well, so my brother Jerry and his wife Amy wanted to go help sandbag around Hilton Coliseum. Their oldest daughter Anna was only about 5 months old, and I offered to drive to Ames and watch her so they could help with the sandbagging efforts. At the time I was driving, only one road into Ames was left open and the line of cars on that road was endless going into town. The cars were moving at a snail's pace as the troopers were directing traffic, so a lot of time was spent sitting still waiting to move another inch in the right direction.

In the previous month I had been calling dad periodically with concerns about my car, an Oldsmobile Cutlass that was a bit unpredictable. It didn't have the little gauges that told me the exact temperature levels, but a little orange temperature light kept coming on and staying on for long periods of time. Being that I know nothing about cars, I thought I should share this information with dad, but his response was that it was just a "dummy light." He told me not to worry about it – he was sure it was a problem with the light itself and not the car.

Which brings us back to that afternoon and the slow moving line of cars on that long stretch of road. I was rocking out to the radio with my air conditioning on, waiting for the next lurch forward when I heard this popping sound, followed by a clunk. Then smoke started billowing in through the air conditioning vents and something certainly smelled like it was burning. I turned off the key, leaped out of my car and did the only thing I knew to do... I started pointing at my car and announcing to everyone that it was on fire.

The gentleman in a truck behind me was kind enough to hop out and help me get my hood open, put out the fire and let the car cool off. A state trooper came by to say, "Yep... your car was on fire..." and told me I could ride with him into Ames. He dropped me off at a Hardee's where my brother Jerry came and picked me up, and when I got in the car Jerry had other exciting news for me. At first I thought he was just messing with me when he told me that my new nephew Thomas had been born that day, a full six weeks before he was due. Seriously, people, what more could possibly happen?

Funny you should ask...

Jerry dropped me off at his house, and then went driving to the location of my abandoned car. He called from his cell phone as he was getting close to find out the exact location when he suddenly burst out laughing. "I think I found your car," he said. "It's surrounded by fire trucks."

When we pulled my car to the side of the road, someone must have closed the hood and it was hot enough that it started on fire again. Because I had locked it up and taken my keys with me, they couldn't pop the hood and the fire required trucks to come. Now, I should have been more concerned about my car and the contents in the trunk, but my only response was to ask Jerry to please call dad for me and tell him. I sooo didn't want to be the one to do it.

When he got back home he told me he called dad, who started inappropriately laughing as well. Apparently I had complained enough about the car not working that he took me seriously and had traded in the car the day before. We didn't even own the burning vehicle anymore. Of course, dad settled a fair trade with the dealer later, and after a few days of watching Anna we met dad and I got in a new-used-Oldsmobile and headed back to college.

So, I'm not looking forward to the prospect of losing water and electricity and my mind along with it if the Internet fails me during our current flooding crisis... but today's lesson is that there is always a silver lining, people. My car is not on fire.

Relax…

Riley just informed me we’re taking a break today… he’s needs a minute to chill out and relax, you know, since he leads such a rough life and all. Seeing as he’s the alpha dog around here I really have no choice but to do what I’m told.

I’m very well-trained like that.

We’ll both meet you back here bright and early Monday morning … in the meantime, I hope you have a beautiful and relaxing summer weekend!

Found Photos

We have a winner of the [soon-to-be-made-I-promise] canvas! :) According to random.org, the winner is:

Elisa: Thank you so much for your inspiration! Through the rose gardens and stormy seas we are to keep our focus on the Lord, and you have been an encouragement to me through this blog. Not a dutiful focus, but one rooted in joy and delight in Him.

Email me at gitzengirl@gmail.com with your mailing address and I’ll get it out to you as soon as it’s made!

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I went searching through some folders tonight looking for these pictures I had forgotten about … my friend Wente [who is one of the Big House Girls] had come through town several months ago and ended up stopping in for supper with me and Susie. And, of course, I pulled out my favorite accessory… the camera!

Don’t I have the cutest friends? Wente was such a good sport, since she enjoys getting her photo taken almost as much as I do. In the process of taking pictures she almost got excited about it, though, because she thought that maybe I would stop putting this photo of the Big House Girls on the blog every time I referenced them:

The thing is, Wente is the LAST person in the world who would normally be wearing a crown on her head and a Barbie doll sweater over her shoulders. We were celebrating her engagement in the above picture and took great pleasure in making her wear them despite her feeling ridiculous. You know, because that’s what friends do when they’re happy for you.

Susie and I appeased her that night by taking a group picture, but since our friend Amy wasn’t present it was really a moot point… the Big House just doesn’t work without Amy, our lying-about-bats-in-the-house member of the group.

The night was eventful enough even without Amy there, however. Not only did we do a lot of laughing, talking and looking at old pictures, but it was also the night I opened my laptop to show them photos and it died right before our eyes. Susie had moved the screen to angle it better and the moment she touched it the lights went out and never came back on. The laptop that had been dying a slow death had finally bit the dust.

Poor Suz. That kind of thing happens to her all the time. Ironically, the fact that she touched it and it died was so funny to me that I wasn’t nearly as freaked out as I would have been!

Anyway, the reason I went looking for the photos is because of Susie’s mom, Linda [the one in the middle]. She brings me groceries once a week and this past Friday she brought her two oldest friends, Dixie and Joy, along with her. I hadn’t seen them in a few years and was instantly taken in by their laughing, talking, giggling selves.

They kept teasing me during the photo-taking session that I was capturing mine and Susie’s future on film. That it should serve as a warning, because before we knew it we’d be just like them.

How blessed we are.