Sunday, June 28, 2009

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:

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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.

Friday, June 26, 2009

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!

Tuesday, June 23, 2009

Hit and Miss

IMG_7204 wassup

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. smile_wink

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.

Monday, June 22, 2009

Brought to You by the Letter C

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

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!

a to z

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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.

Friday, June 19, 2009


IMG_023111 f

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!

Thursday, June 18, 2009

Found Photos

We have a winner of the [soon-to-be-made-I-promise] canvas! :) According to, 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 with your mailing address and I’ll get it out to you as soon as it’s made!

***** ***** ***** ***** *****

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.

Wednesday, June 17, 2009

HDG: Expecting Gold

hump day

Dilemma: my hands are too shaky from all the meds right now to make you a pretty new canvas for today… BUT, I just like these giveaway days too much to skip one. To satisfy my need to give stuff away and my inability to write legibly at the moment, I’ve decided to do a repost of a canvas I’ve already made in the past. This way, you still get a canvas, but I get a little extra time to make it for you!

Just leave a comment at the end of the post to enter the drawing and as soon as my hands get steady again, I’ll mail out a canvas that looks just like the one below to the winner.

Well, it might not look just like the one below. They are handmade, after all. But it’ll look pretty darn close. smile_wink

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Expecting Gold
[originally posted: June 21, 2008]

I was reading through some old posts and I realized just how much I refer to life being about the silver lining. That's not just some sort of "Pollyanna-ish" way to look at life for me. There is a quote on the wall in my alcove by Maurice Setter that says "Too many people miss the silver lining because they're expecting gold." I love that quote not because of the optimistic silver lining, but because of its focus on the expectation of something better.


I think our expectations of what we want life to be often overshadow the good things that are already in front of us... and that's when we miss the silver lining. When my sister was going through a divorce, we were on the phone talking about hard decisions and out of my mouth came these words that I would later cling to for myself as well... "All God asks of us is to live the best life we can with what we are given." The point is, we are all given different blessings and different crosses to bear, which means we can only take care of what's in front of us in that moment and do the best we can.

I don't know if it brought any relief to my sister, but as my life changed over the years it proved to be something I needed to hear. I needed to remind myself that my old gifts were gone, and they didn't serve me in living my best life anymore. I had new gifts and crosses given to me, and I had to rethink how to live my life with them. It took awhile to find my new normal, and that continues to change on a daily basis. But when my focus is on living the best life I can with what I have in that moment, I always find my silver lining. I'm not expecting the gold I used to have. I'm not looking for the gold that I think I should have. I'm looking at the silver right in front of me and saying thank you every day.

And I know I can't just apply this to my own life... I have to apply it to the people in my life as well. If I am really allowing the people around me to live the best life they can with what they are given, I can't put my own conditions on them. Some people have been given more of a capacity for compassion, some for actions, some for being loving. I have to trust that people are doing the best they can, so instead of expecting gold from every person in every situation I can be thankful for the silver lining they inevitably bring to my life in other ways.

Same applies to my body and my health. I am always prefacing any plans I make with the stipulation that I won't know until the day of if any of it will happen. Heck, I really won't know until the minute of. Back when I was able to get out and about, my friend Meg had picked me up one night to go watch Susie's husband Mark play in his band. I knew before we left that my day hadn't gone smoothly, but I was sure I could push through the pain and go with them. I got in her car, and during the very short ride to Main Street the shooting pains in my leg had me shifting around trying to find a comfortable way to sit. We got to the bar, I got out of the car and took about three steps on my crutches - and I was stuck. I couldn't stand up straight, couldn't walk to the bar, couldn't walk back to the car. [Yes, it was as embarrassing as you are imagining.] Susie and her brother Steve helped me to the car and Meg drove me straight back home.

I was hoping for gold, but I wasn't expecting it. Deep down I knew there was a huge chance the night wasn't going to play out as I had hoped... but I didn't miss the silver linings. Steve and Susie were there to help me into the car. Meg wasn't worried about missing the first set and instead made sure I got home ok. And here's the biggest silver lining of them all: all of those people would try again with me any time. Really, how can I be anything less than grateful for that?

Now, let me just say that sometimes disappointment weighs heavy on me. But in my disappointment, the same rules still apply... I do the best I can with what I have. Is it usually all I want to do? No. But in the end, focusing on the silver lining is what gets me through the day.

I really think, in this life, we find what we are meant to do when we stop focusing on what we are kept from doing. I have to remind myself of that sometimes, but the more I acknowledge that silver lining, the less I notice the gold that's out of reach.

So tell me, what silver linings have blessed you today?

Leave a comment before midnight CST to win a [yet-to-be-made] canvas! Only one comment per person, please…

Tuesday, June 16, 2009

Sting of Words

I’m happy that I can say, for the most part, I have very little conflict in my life. I don’t yell, have big fights, hold a lot of anger against anyone. People have hurt my feelings and I’ve hurt theirs, but those moments have been few and far between… and usually very unintentional.

Which is why the experience I had this past Friday night was so incredibly shocking to me. I would have never dreamed of blogging about it, except the longer I sat with it the more I realized that – like all things in life – there was a lesson to be learned.

I have an upstairs neighbor who has lived directly above me for a couple of years now, who I really don’t know at all. I’ve seen her two, maybe three times in the hallway and honestly wasn’t even sure of her name. Those few times we smiled and said hello… nothing memorable, just neighborly.

The thing is, she and her boyfriend are very loud. In the beginning it was loud parties and loud music, but after some complaints were filed from multiple neighbors those died down. Mostly we all just put up with rude things, like cigarette butts landing on my patio from her deck above or being woke up at 3am from the noise. Annoying, yes. But, being the non-confronter [read: wimp] that I am, I just picked up the cigarette butts and dealt with it.

You all know I’ve been feeling less than stellar, and this past Friday around midnight or so the noise was really getting to me. There was a lot of loud talking, running around… sounding like they were moving furniture. And I was exhausted. I normally let it go, mostly because I have no way of telling her to be quiet. I can’t walk up the stairs to knock on her door. I don’t know her name or have her number. So I walked into the kitchen, grabbed the broom and rapped it on the ceiling.


Less than a minute later, there was a knock on my door and the very angry sister of my upstairs neighbor started laying into me before I got the door propped open. She was literally shaking with anger as she started telling me I was a rude little person... that she has a three year old with every right to be running around if he felt like it, and I needed to back off and let them socialize with her sister. She said they would be in and out all weekend and I’d better get used to it... I was rude for hitting the ceiling, should stop complaining and leave her sister alone.

I know you all don’t know me in person, but I don’t know how to fight. I’ve never yelled in an argument in my entire life. Which means I was standing there, stunned. Before I could literally get a word in edge-wise she said, "Oh, and I have MS. We all have problems. You being sick or whatever doesn't make it ok to mess with her life.”

That’s when I understood the feeling of being sucker-punched.

Tears stung my eyes, I looked at her and told her I was sorry about her MS, that I barely know her sister and don’t have her number to call her, I can’t walk up the stairs to knock on the door and had no way of letting them know how loud it was other than to hit on the ceiling.

To give you an idea of how all of that looked, my lungs can only get about four words out each breath right now… so I was obviously laboring to a degree just to tell her that much.

She told me again that she has been sick, too, and to get off my pity party.

I honestly barely remember how it ended… I knew I was seconds away from crying from the sting of the words. I was very upset, but calm. I told them the way they were talking to me was totally ridiculous, I was sorry if they were offended and that they needed to leave my hallway. I closed the door and locked it behind them. Part of me ended it so quickly for my own safety, and part of me did it for the little three year old who had followed his mom down the hallway and was witnessing it all.

Now, here’s the part where I get to why I’m telling you about it. After I sat down, rather stunned, and tried to process what went wrong and how that could have been so completely out of control, a couple of things became very clear to me. The sister had come to my door, very angry with preconceived ideas about me and my life. A sister that I’ve never seen or met before. My neighbor doesn’t know me… she could deduce that I don’t leave the house, that I’m not out and about, that I walk with a walker and am sick. But she doesn’t know me.

From her words, they assumed I was a bitter person trying to make them miserable. My neighbor created her own story about me in her mind, simply because my life looks different. A woman with a disease of her own glanced into my life, assumed I was an angry victim who believed the world owed me something and was totally prepared to put me in my place. I didn’t get a benefit of the doubt. I didn’t even get to speak. I got the full force of whatever anger and resentment had built up in her life.

I was the instigator that night by not ignoring the noise. I’m sure it did seem aggressive with the bang on the ceiling. But the family had to have talked about me, made decisions about me, made judgments about my life long before that 30 second walk to knock on my door and tell me that me being a sick and bitter person was all they saw.

They were so wrong. And later I wondered how many millions of times in my life I’ve done the exact same thing. I can obviously say I would never treat anyone the way they treated me. It boggles my mind. But I can’t say my mind has never made stupid snap judgments. What did I think about people I used to see in the mall? How did I make judgments about their appearance or the way they spoke to their kids? Did I think someone was lazy for driving their car two blocks away rather than walking, without even knowing if they were able? Did I think someone was a rude person because they didn’t have a smile on their face, not knowing what had happened in their lives that day? Did I get so wrapped up in my own world that it made me feel better to judge their worlds, which I knew nothing about?

That night, I was a complete and total mess until I stopped and looked at it from an outside perspective. Until I looked at it from the angry sister’s perspective. Until I considered that I have no idea what is happening in her life that makes vicious words a soothing feeling to her. As cruel as she was, a part of me is so sad that a person can live with that much anger inside.

I’ve lived through enough to know that I don’t like or need drama in my life. I have wonderful friends in the building who I could call if anything like this happens again, but I’m honestly hoping the confrontation left with the sister. There will be no more ugly words, because I won’t participate. But I will take this lesson from it: the next time I make a decision about someone I will be basing it on who they are, not who I think they are.

As someone who has apparently been judged for awhile now without realizing it, I can tell you the difference can be immense.

Monday, June 15, 2009

Brought to You by the Letter B


Happy Monday, blog peeps...

Thanks again for all of your kind words last week, and for giving me all those great ‘B’ suggestions for today’s topic. I’m still running pretty slow since my outing over a week ago, but am finally feeling a bit stronger. I’ve moved from holding on by my fingernails to having a decent grip on the railing, and I can’t tell you how much good it does for me to see even little improvements.

It also does me good when life hands out little gifts… like the fact that, when I was unable to do anything but lay still and do breathing treatments this weekend, my cable company had a free HBO movie preview weekend!!! Ahhh… there is a God! And He likes me!


It also fit in perfectly with one of your ‘B’ suggestions:

For B, I think it should be books and blockbusters.

So, books and blockbusters it is!

Back when I was an English major, I knew upon walking into my first class that I was not going to fit the stereotype very well. I was a showered, make-up wearing, clothes picked-out girl with a Mountain Dew in hand… walking into a room with two options. One side had an array of grunge, black outfits and crazy piercings, while the other side was doing their best to look like they didn’t care about the insignificance of college life… they were far too busy making sure not to speak unless each word was at least five syllables long. Oh, how they tried to be existential and above it all.

Yes, my peppy post-cheerleading self was totally out of place. And I loved it… partially because the people were as interesting as the books, and partially because, like the books, it opened my world to entirely new experiences.

The point of me “not fitting in” is a way to explain why I am the worst person to ask about my favorite things. Favorite books and blockbusters? Favorite style? Favorite music? The truth is, I just don’t really fit the categories… I’m a hodge-podge of likes, the definition of the term eclectic. More than I like any style, I like what a style does for me.

What do books and blockbusters do for me? They totally get me lost.

I remember riding in the car once when I was little, absorbed in some book or another, when I screamed aloud and nearly scared my mom off the road. I had forgotten where I was, what we were doing… the scene in the book was so vivid in my mind, and the emotions of the characters had so completely taken over my being, that the surprise in the plot surprised me right into a scream. And that’s why I love a good book.

I like my brain to be challenged. I love Patricia Cornwell’s series about Kay Scarpetta using forensics to solve crimes. I love figuring out who did what and why. I love it even more if they can surprise me. I love action and adventure… both in books and in movies. I love a fast pace that takes me from moment to moment, not allowing me enough time to daydream back to my own reality.

I love fantastical stories that could never happen, but seem so possible you expect to wake up the next day in a totally different reality. I love the fact that some of my nieces and nephews went to bed the night before their 11th birthday expecting an invitation to Hogwart’s Academy just like Harry Potter. I would have thought it possible at that age, too. If it could happen in a book, if I could see it in my mind and feel it in my spirit… then somewhere out there I thought it just might be true.

Which probably sums up why I don’t do horror or scary movies/books. Mysteries and suspense? Oh, yes. Being terrified… no thank you. I’ve never seen Silence of the Lambs, but the preview where he said, “Clarice…” was enough to send shivers through me for days. I already know crazy exists, I don’t need to feel it deep within!

My two favorite courses in college were ones with heavy reading. In my Literature and Psychoanalysis class, we took anything from Shakespeare to Faulkner to Hawthorne and psychoanalyzed the characters using Freud and Nietzsche. I was so in over my head, but it helped me learn to read in an entirely different way. Whether a classic or a romance novel, I suddenly found myself more involved, more lost in the world of the characters, lost in the “why” of everything.

The second class that sticks in my mind was an entire semester dedicated to Milton’s Paradise Lost. I can state unequivocally that I love Milton because my professor loved Milton. She was so difficult. An ‘A’ on a paper from her pretty much made your college career worthwhile. I could go into other classes having not even finished a book and talk my way through a relevant discussion, but in her class I could bring my A-game and leave having to start over from scratch. I loved the challenge.

As much as I loved those classics… loved prose and mythology and words that melted like butter when read with the right tongue… I am so not a book snob. My favorite reads are still the ones that lose me into an alternate reality. I love a good Nicholas Sparks, Danielle Steele, James Patterson. I couldn't care less if they are the same story over and over again, as long as you take me on a journey that keeps me turning the page. I find the pace, the flow of the words, the imagery that’s conjured is so much more important than a critics lofty opinion. I’m no critic… when I read, I am purely a fan.

Blockbusters are the same. I love a classic. I love action, adventure, romantic comedy, drama. I love the clothes and the speech and the way people decorate their homes. I want to live Meg Ryan’s life in You’ve Got Mail… opening my children’s book store everyday after walking by rows of flower shops and buying a bagel from a street vendor. I want to be as plucky as Kyra Sedgwick in Something To Talk About when she defends Julia Roberts as only a sister can. When Meryl Streep opens the movie Out of Africa by saying, “I had a farm in Africa at the foot of the Ngong Hills,” I’m suddenly on an adventure that has swept me to a foreign place. I don’t think I watch movies as much as I put myself into their lives and pretend for an hour and half that anything is possible.

I just want to be entertained. I want to not be in my world for however long they can keep me in theirs.

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a to z

Ok, people… time to earn your keep. smile_regular Go to the comment section and hit me with your best ‘C’ topic idea for next week!

Friday, June 12, 2009

Flashback Friday: Relay for Life

Since our local Relay for Life event is coming up, I’m going to use today’s Flashback Friday to republish a post I wrote about it last year. I’ve been involved in the Relay for many years, raising money for cancer research in different ways. I used to walk in the relay, I’ve sang at the opening ceremonies, made luminaries and donated canvases to raffle. Each little way of helping has been a privilege and as this year’s Relay is fast approaching, and my health is anything but fast improving, I’m not going to be doing as much as I’d like to promote the cause.

So the least I can do is promote it a little bit on here… you’ll have the opportunity to give if you’d like, but most importantly I’m posting this to bring awareness to the event, and encourage you to get involved in your local Relay for Life as well.

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Reason To Relay
[originally posted 6.18.2008]

When I was in grade school we had traveled during the winter to an away basketball game one of my siblings was playing in. While at the game, a huge blizzard had hit and continued to rear it's ugly head as a caravan of cars headed back to our hometown. You literally couldn't see your hand in front of your face it was such a complete and total white out.

As the caravan crept along my dad had to walk to the front of the line and sit on the roof of the lead car in order to tell them if they were still within the lines on the road. He sat, perched in the cold, until we came to a farm house he recognized as belonging to a family that went to our school. They weren't home, but the caravan of cars all parked at their acreage and we filed into the house (I have no idea how they got in) to wait out the storm.

The winds were so strong that Dean Dodds, who at my young age seemed like the largest man I'd ever known, carried me from the van to the inside of the house to keep me from getting blown backward. We made it in the house and it was nothing short of a modern day Little House on the Prairie. The men went to light the fire in the fireplace while the women went to the kitchen to see what could be prepared for food. The mood turned from ominous to fun once the large group of people got into the house and we played cards and listened to the grown-ups retell the happenings of the previous hours.

It was getting late and we were obviously all settling in to stay for the night, so mom took me to a back bedroom where we shared a bed with Dean's wife Doris. I had known Dean and Doris for as long as I could remember, but when I went in Doris had already taken off her wig and was propped up against the pillows in bed with just her handkerchief on her head.

It was the first time I saw cancer.

I didn't know why she didn't have hair; I didn't even know she was sick. I do know I probably stared longer than I should have, but Doris seemed unaffected and just smiled at me. I don't remember being scared... but we never talked about it at the time or after that. I think I later asked my mom why she had a wig and mom told me she was sick, but the word cancer was never uttered.

Back then it was still an unknown. It was still rare in my world. And now it seems to be as common a word to children as talking about a cold. I am sure there isn’t a person reading this who hasn't somehow been affected by cancer. My Uncle Bob died last year of cancer, my friend Mary Burns' husband John lost his cancer battle previous to that. And it is because of my friend Kelly's family that I am involved with Relay for Life.

relay photo
The photos above are of Marv and Kaitlyn, Kelly's dad and daughter who have both died of cancer within the past five years. Kelly, her husband Nick and daughter Megan created a team called The Smiling Kate's, which I’ve been honored to be a part of. Their involvement in Relay started when Kate was still with us and they all worked together to raise money to fight this disease, as well as enjoy the camaraderie and fun the event creates. Back when I was more able-bodied I had the opportunity to sing at the opening of Relay a few times and it remains one of the most meaningful experiences I've ever had.

I am very aware of my shortcomings, so I can tell you unequivocally that I am the world's worst fundraiser. A natural salesperson I am not. My pitch would go something like, "If you don't mind, I mean... if you maybe have the ability to help, if it's not too much trouble..." You get my drift. Our local Relay is coming up, so here's what I'm going to do. If you have been looking for a way to help someone, this is an easy way for you to go about it. Click on this link and it will take you to my Relay page where you can donate. No pressure; just an opportunity.

And if you aren’t able to give financially, I encourage you to look at ways to volunteer your time for your own local event. It’s an amazing opportunity to come together for those whose lives have been touched by cancer, so other lives don't have to be.

Thursday, June 11, 2009

Random Bits and Pieces


He was feeling a little neglected lately and wanted to pop in and say hi. Just trying to keep up his good standing as blog mascot. :)

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First thing first… we have a winner!!!! picked:

The NorEaster: "A life story in fifteen steps?"
Well, I'm glad we get to take a long walk with you on your blog, Sara! I don't know about anybody else, but I need your perspective. You are, in so many ways, my joy.

Congratulations!!! Email your mailing address to and I’ll get it shipped off to you. :)

And thanks to all of you for your always-kind words and support. It really does make a big difference having you all here.

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_MG_7501 [no point to this photo, really… just thought he was cute…]

Here’s the part where, after a series of serious posts, I stick in a random blog-upkeep note for you all [after having distracted you with a cute puppy photo]. Awhile back I implemented a new commenting system that overrides the normal Blogger comments you were used to. It’s had a few hiccups, as all things do, but for the most part I’m liking it a lot. Some of you have had questions about how to comment with it, so I thought I’d take a quick minute to talk you through it.

They’ve expanded a few things since I first installed it, so where it says “Guest” … you can either leave it as Guest or click the drop-down arrow for choices of how to sign in. If you have a Facebook account, Google Friend, Twitter, Yahoo, Open ID, Blogspot, etc., it allows you to sign in through any of those accounts. I think that should import your avatar from that account as well, but you’ll have to try it and see. If your avatar doesn’t show up, you can add a photo after you sign in by clicking on the blank face, if you choose.

Whether you sign in or not, the important part is the next three fields. Your nickname is how I’ll know it’s you. If you have a blog or website you’d like to put in the URL field [always start with http://], a link to your most recent post will pop up under your comment so that other people can easily get to your blog as well.

And finally, you want to put your email address in the last field… no one can see it [not even me], so you won’t be getting random people emailing you or anything. If you notice in the comment section, each comment has a button under it that says “Reply.” The button is so I can reply to each of you directly, and you can all reply directly to each other’s comments as well. This is the main reason I changed the comment system… I like the idea of having a conversation within our little community. But the only way you’ll know if someone has replied to your comment is if you leave your email address, then the reply will come to your inbox and you’ll know I or someone else had something to say to you!

I know, I know long explanation just to tell you how to comment, but since there were questions by some, I figured there might be a few more who were confused. The big test will be whether or not I’ve just confused you even further! [It’s been known to happen…]

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Can you tell I feel like I used up all of my words in my first three posts this week? Yep, my brain is pretty random today. I’m also fairly sure it’s been completely taken over by the steroids… I’ve been trying to write out my grocery list for the week and it’s getting a little embarrassing.

Normally I just copy and paste my list, as I pretty much eat the same old boring things each week. A little rice, a little meat, some fruit… the basics. I’ve been trying to eat those things all week and none of them are sitting well with me.

But these things sound divine:
Lays Potato Chips. French Onion Dip. Powdered Sugar Donuts. Glazed Donuts. Marshmallows. More Potato Chips. Did I mention French Onion Dip?

So, if this turns into a foodie blog, it’s totally not my fault. I’m blaming it on the steroids. Tune in next week when I give you step-by-step instructions on how to squirt Hershey’s syrup directly into your mouth and call it lunch.

Riveting stuff.


Wednesday, June 10, 2009

HDG: Attitude of Joy

This was a topic suggestion for Monday’s alphabet-sponsored post:

"attitude" I would like to talk to you about how you keep such a good attitude. Is it something you just are or do you work at being positive? And how do you achieve it each day, moment, etc. And do you ever find yourself in the dark place of a bad attitude?

…so, I thought I’d make it into a Hump Day Giveaway post!

hump day

I love the movie Out of Africa. The woman Meryl Streep portrays is Karen Blixen, who wrote under the penname Isak Dinesen. This is one of her observations about life in Africa in the early 1900s:

"Difficult times have helped me to understand better than before how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever.”
– Isak Dinesen

I couldn’t agree with her more.

That’s not to say it’s always simple to be happy and have a good attitude. Not all of life can be looked at through rose-colored glasses. I will admit I have a natural tendency toward that, which is great. But with the way my life has played out there came a point in time when I made a conscious decision that I wanted to choose happy. I wanted to choose gratitude. I wanted to choose joy. I wanted to spread that around as much as I could.

I sometimes feel like lamenting. I usually choose to move on instead. That isn’t always easy, but it has become second nature over time because life left me with little other choice. And like the quote says, difficult times allowed me to realize that worrying about what can’t be changed is really so very unimportant. In that difficult stuff, the stuff where abilities and things are stripped away, I’ve come to see how much of that I never really needed to begin with. I miss it, I loved it, but it was just window dressing on my life. And now when I get small glimpses of those moments, they are treasured and not taken for granted.

Last Thursday, my parents came down to take me to an appointment with my doctor, Annie. I’ve been having a hard time with my lungs, and while I used to just have problems reacting to the air when I went outside or opened a window, I have now started having reactions to the air on people when they come into my home. After a couple of instances in a row, I couldn’t get my breathing back to normal and needed a chance to talk with her about my best plan of action.

Of course, going to the doctor meant going outside. I knew this was not going to be a good thing for me. I was preparing myself for a rotten couple of weeks, reacting to the air, having to go on steroids, breathing treatments that make me feel awful, burning eyes, ears, throat. This wasn’t going to be fun.

But I was going to go outside. I was going to feel the fresh air and soak in the rays of sunshine that have alluded me for so long. I knew it was going to be awful for my body, but I also knew those fleeting moments could be great for my soul if I just took the time to savor them. Thursday was a gorgeous day here in Iowa. The temps were in the 70s, the sun was shining, a fresh breeze was blowing. I looked out that window all morning, telling myself that this would be worth it. It would be a hard few weeks, but this was my one chance to be outside and it was a perfect day.

As Dad walked with me out the door of my building to the waiting car, the sun went under the clouds.


I laughed, said isn’t that just my luck, and declared that the sun better shine when we got to where we were going. We drove to the lab where I would need to have blood work done, the sun shining on the way. Dad pulled up to the door and the sun hid behind the clouds again… playing its game of hide and seek. As we walked into the building, a woman with her four little girls were walking ahead of us… the girls had an abundance of braids in their hair with at least 30 brightly-colored clips each. The mom excused herself as they were blocking our way and I commented on how lovely their hair looked.

She began to tell me, in the short walk down the hall to the lab, how much she loved doing their hair. She had been in prison and her oldest daughter had to learn how to tend to the little ones, but she was glad to be doing it herself again. They were on their way to the surgical center where her baby was in surgery and we wished each other luck. Mom looked at me as we parted ways with the family to go into the lab and said, “I didn’t know it was possible to learn a whole life story in 15 steps.” I didn’t either, but it was so nice to be out… to engage.

Leaving the lab and showing up at my doctor’s office was the same story… I couldn’t catch the sun if my life depended on it. I was trying to enjoy it out the car window, as I was enjoying the trees and the grass and roads I used to drive down everyday. And even though I was a little concerned that my glaring white skin would sparkle in the sun like the vampires in Twilight, I wanted to feel the sun on my face more than anything else that day.

By the time I got in to see Annie, I wasn’t doing well. My voice was going, my breathing was bad, my pain was increasing by the minute. It had been awhile since I had seen her [I’ve been going mostly to my rheumatologist now] and she hadn’t realized how much my life had changed in the last year. We talked through my prognosis, my medications, my options of what I could take to help with my lungs and the accompanying symptoms. We talked about some heavy topics and laughed about dumb jokes. She hugged me three times and we both knew, after 15 years of treating me, I wouldn’t be coming in to see her again. She would make my medical decisions, but it would be through home nursing now so I won’t have to make an extra trip out of my house again.

As Mom and I walked into the parking lot and dad pulled up with the car, I stood outside the door and decided I wasn’t getting in until the sun peeked out from behind the clouds. Mom and I talked about the perfect temperature and refreshing breeze. We talked for a moment about the things we discussed in Annie’s office, and I told her that no matter how life progresses for me from this point out, it was ok. I was good with it, that God and I are good about it.

Then the sun came out.

And Mom said she thought God was good with me, too.

So, the honest day-to-day stuff you were asking about: my body isn’t doing very well. I'm in pain. I’m not breathing well, my eyes and ears and throat burn. The steroids and breathing treatments bring their own host of issues that leave me feeling unwell. I’m very tired.

But all I can think about is that woman and our brief chat as we walked down the hall. I’m hoping whatever got her into prison is something that is behind her in life, and that those braids in her daughters’ hair will keep her wanting to be home with them. I love that I had a chance encounter with a stranger and engaged in real life for a moment.

I can’t stop thinking about how blessed I am that Annie has taken care of me all these years, treated me with respect and love and will continue to have my best interest at heart, even from a distance.

I can close my eyes and feel the breeze, feel the sun on my face and see the bright orange color that rests on the inside of my eyelids when they are closed and facing the sunshine. I can smile remembering that, for a few fleeting minutes, Mom, Dad and I sat in those patio chairs I’ve been longing to relax in and ate McDonald’s french fries just because we could… the damage was done and we were determined to take our moments.

I have a lot of things that aren’t going right because I left the house on Thursday. Those things will take awhile to leave my system. But I choose the joy. I choose the conversation, the relationships, the breeze and the sunshine.

And especially the french fries. :)

I choose the joy. When something is going badly and I’m dwelling on it, I think instead of something for which I am grateful. I swear to you, it’s as simple as that. You just have to decide today, and again tomorrow. And before you know it, you’ll have an attitude of joy more than any other attitude you have at your disposal.


To win today’s canvas, simply leave a comment before midnight CST and I’ll announce the winner tomorrow! [Only one comment per person, please.]

Tuesday, June 9, 2009

Blog Peep Questions: Round 5

blog peeps logo

In keeping with the theme of answering questions about my illness that started in yesterday’s post, I’m going to answer two blog peep questions I’ve received that were very similar…

1. When you are going through a hard time, do we always know?

2. Are you struggling day-to-day when you write posts that aren’t about your illness/how much do we see of how you are day-to-day?

The answer is no, you don’t see a lot of the daily stuff on here. Other than the straight-forward details about the disease I explained to you yesterday and in an earlier entry, I’d say you probably see about 5% of my daily struggle in my posts.

But here’s the thing, I hate to even call it a struggle. I know that sounds weird because it’s difficult everyday… and everything I do requires thought and effort and energy. But the truth is that it’s just my version of a normal life right now. And that normal is changing all the time.

Not talking about it has absolutely nothing to do with being willing to talk about it, though. I think we’ve covered over the past year that I’m more or less an open book… and am not shy about telling you of my many ridiculous antics. I’m also not shy about talking about my disease or answering questions, so if you have specific questions you should feel free to ask and I’ll do my best to answer you.

The reason I don’t talk about my day-to-day life in the ‘struggling sense’ is simply because I don’t sit around and think about it all the time myself. I just live it. There are moments that are incredibly frustrating, tiring, maddening, sad and exhausting. Everyday. But that doesn’t make my day a frustrating, tiring, maddening one. I reduce them to the moments they are rather than letting them define my whole day. I find that lamenting over all of those things only produces more lamenting. And I don’t want to live in a space that is taken up by the negative. It’s just simply not a fun way to live.

You know by now that I consider all of you who show up everyday to be my friends, and I want you to know that I don’t often talk about my day-to-day struggles with my friends that call me on the phone or stop by to visit, either. I want to spend my time in the joyful things… in hearing about their kids and their outings and their lives. I want to talk though their normal troubles and get lost in real life with them. If they ask me how I am, I tell them… but often not in the little details. It doesn’t change my reality and it does nothing but worry them, so it seems like complaining without purpose.

And that’s kind of how I judge what I talk about here: does it have a purpose? I share with you the ways I’ve struggled, how I’ve worked through different situations or emotions, and being sick is obviously a big part of those discussions. But I don’t want to talk about being sick just for the sake of talking about it… I want to talk about my illness as a way to show you how I have dealt with different situations, and hopefully learned to embrace and accept things. How I’ve learned to trust God with my life and realize that my life isn’t about me and my wants, as much as Him and what He needs from me.

I also have a purpose in updating you on the big things… if I don’t share with you that I can’t leave the house or open a window, then you’re going to be pretty darn confused about why I stay inside all day. :) I want to tell you about the big things because they shape my stories, they alter how I view the world, they help make me who I am. And there have been a couple of times, as there are periodic times with my friends, when I absolutely have to tell you that I am sad or exhausted or just plain fed up. It doesn’t happen often, but there are moments when the only way I can make room for joy is to get rid of the sadness by speaking it out loud. And in those moments, I’m glad my friends or family are on the other end of the phone, and I’m very glad all of you are here.

But the little things… the day-to-day… they are constant and never-ending. If I told you about it every day then this wouldn’t be a real representation of my life. Many years ago, when I made my list of Life Goals, number five was: To spread the joy, not the fear. My physical world is made up of the day-to-day pain and sickness, but my LIFE… my life is made up of joy. And that’s the part of me I want you to take with you everyday. Even when I do talk about the emotions or the physical struggles, I want you to leave knowing that joy can come from the hardest times and the ugliest places. You just have to choose it.

But I’ll talk to you more about that tomorrow. :)

Monday, June 8, 2009

Brought to You by the Letter “A”


Wowza. You people know how to alliterate.

I was hoping to have a couple of ‘a’ ideas to choose from, but I never expected the comments last Monday to be so entertaining! I have to admit I originally intended to choose the most fun and wacky topic suggestion, but then a few of you commented about wanting to know more about my illness [Ankylosing Spondylitis] and things associated with the disease.

A couple of you asked straight up:

* Any new research, medications, etc for Ankylosing Spondylitis? Well, it does start with an "A"

* I second the idea to talk about your illness and research, etc. related to that topic for "A". I know it would help us all understand your day to day struggles.

Another asked about the emotional side:

* "attitude" I would like to talk to you about how you keep such a good attitude. Is it something you just are or do you work at being positive? And how do you achieve it each day, moment etc. And do you ever find yourself in the dark place of a bad attitude?

And one of you pulled out some rheumatic alliteration:

* Okay, finally got one...
anticlimactic antics in annoying arctic air around associated arthralgias...

It would have been appealing to put all artistically articulated alliteration attempts one-after-another in the post and leave it at that, but I figured it would be cheating a bit if I let you guys do all the work for me!

As it turns out, you’re asking about my disease during a week where it’s making life even more difficult than usual. I’ve been half-tempted to take the week off, but I decided instead we may as well just attack it head-on, right? The next few days will be posts answering some of the questions/topics you have asked about this illness, and since I know I’ve gained a lot more readers since my one post explaining the disease a year ago, I thought I’d take today to explain the basics.

I have a disease. It sucks.

Ok, maybe that was a little too basic. ;) Let’s try that again.

My disease is called Ankylosing Spondylitis. It’s a genetic, systemic, autoimmune disease… which means it’s hereditary, it can affect pretty much any system in my body and it all stems from my own immune system attacking me.

Good times.

The way I explain it to kids is that when they have a cold, their body sends little Pac-Man cells to eat up all the bad germs so they can feel better again. My body gets confused and can’t tell the difference between the bad germs and the rest of my body, so the Pac-Man cells just attack everything. And that ends up making me feel sick and in pain.

To grown-ups, I simply say my immune system is ignorant. The Pac-Man [also known as the HLA-B27 antibody] started out by attacking the joints in my sacrum [low back], spine and neck. As the joints are attacked, inflammation occurs and scar tissue forms around the joint. The goal of the disease is to keep attacking until that scar tissue forms into bone and fuses the joints together. The process of attacking/fusing is what causes a great deal of pain.

There was a time, not long ago, when doctors believed this was purely a man’s disease, but there is more research now about the affects of the disease in women, and they are discovering that the disease can progress differently in the genders… but the truth is that it’s different for every person. Some people fuse quickly, and after fusing the pain burns out with the disease process. Some fuse slowly or not at all, some have many systems affected, some only have certain joints that cause problems. There’s really no rhyme or reason and there is certainly no predicting it.

I’m one of those people who deals with inflammation all throughout my body and systems. I have pain in my joints 24/7, feeling them every moment of the day. Some days certain areas are worse than others, and different joints flare more at any given time. There are days where I can be walking behind George [my walker] without a problem, and the next moment I can’t put pressure on one of my ankles. That may last 10 minutes, that may last 10 days. I honestly never know and never count on anything, just dealing with what comes as it does.

I can have inflammation in my eyes [iritis], inflammation in my lungs, problems with my digestive system, fevers, chills, night sweats, nerve pain, you name it. I have leukopenia, which means my white cell count is low and goes lower when I’m sick, so if you come to my house with a sniffle I could get pneumonia. I take medication so I can eat, breathe, sleep, move, go to the bathroom, deal with pain, migraines and a host of other issues. My lungs have become more of an issue because my ribs don’t expand as much as they used to, which means my air capacity is [at maximum] around 60%.

The other problem having to do with my lungs, which I’m dealing with now, is that allergies are directly connected to the immune system as well. As my disease has progressed I have found myself allergic to almost everything… smells, allergens, cleaners, wool, flowers… and now I’m simply allergic to the air, hence my confinement to my home. No open windows, no going outside, no warm sunshine on a beautiful day.

The pup can’t go outside anymore either, as he carries the air in on his fur and causes reactions for me. It’s definitely an on-going process and I am constantly learning to adapt to each new thing that arises, but I will say that as time has gone on the adapting process gets easier and happens faster. Acceptance comes more naturally with practice.

Now that you have a general idea of the illness, I’ll address the million dollar question: why can’t they fix it?

Well, there are a lot of new medications out there that have made huge differences in people’s lives. Some that have been living with the disease have seen improvements, and patients who are just developing the disease are able to take medications and avoid a lot of issues, or at least have the development slowed down.

I have tried every medication at my disposal, and I am only able to take one medication that has any impact in fighting the disease. The n-saids, which help with inflammation, nearly destroyed my digestive system. I took methotrexate, which is a chemo drug, and withstood migraines three days out of every week for as long as I could, but eventually my rheumatologist pulled me off of it. [Thank God.]

There is a newer class of medications, you’ve probably seen the commercials for them: Enbrel, Humira, Remicade, Orencia. These are fantastic drugs that have made a huge difference for a lot of people. I have allergic reactions to them… the kind where my throat starts to swell shut. So, those are out.

The one medication I take for the disease [other than the pain killers] I can only take in a limited amount before my white counts drop to a level the doctors aren’t comfortable with.

In other words, I’m stuck. And I’ve exhausted every option. And yes, I’ve tried homeopathic things that were worse for me than any drug I’ve ever taken. I spent years fighting, and I will always try what I can in the future, but accepting what is, living with it, embracing it and finding joy in it is the only way I know how to live a productive life. And as much as this disease has taken from me, it’s also given to me and taught me and strengthened me.

But I’ll tell you more about that over the next few days. This post is plenty long enough already. :)

Now, since you’ve made it through all those fun details, I feel it’s my duty to provide you with a photo to leave you smiling for the day:


You just gotta love that ‘hawk.

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Alright now, blog peeps… don’t forget that you still have work to do. Next Monday will be brought to you by the letter “B” … and you have to come up with the topic. Now go to the comment section and fire away!

Friday, June 5, 2009

Only A Savior

Hello, sweet peeps…

Running a bit slow today, so in the absence of my words I thought I’d leave you with my voice.

05 Only a Savior  by  gitzengirl

Hope you enjoy it and have a beautiful weekend… I’ll meet you back here Monday for our first “letter sponsored” post. :)

Thursday, June 4, 2009

Dan the Piano Man

People, I have met the Dog Whisperer’s long lost American cousin. I have no real proof that they are indeed related, but since I’ve never seen anyone tame my ornery pup so quickly and easily, I figure it has to be something in the blood.


Meet Dan. Otherwise known as Riley’s new BFF.


Dan was my birthday present from those faith sharing girls I introduced you to yesterday. Ok, well DAN wasn’t my present, but his handy piano-fixing skills certainly were. Dan the Piano Man, as I have just now decided to call him, had virtually no experience with player pianos… but we quickly discovered we are like-minded in our approach to fixing things: if we take enough things apart we’ll figure it out eventually.


Did I mention Riley fell in love with Dan the Piano man? Yes, he did, and he was more than willing to be Dan’s happy helper through the entire process. Just so you know, I wanted to put Riley on a leash, but Dan was getting a kick out of him. He even brought his wife back to meet the pooch after the piano was fixed.

I know where to look if Riley runs away from home.


I was totally enthralled with this whole process. And I think Dan was pleased to have someone he could explain his work to and show the details that impressed him. The fact that this piano is over 100 years old and working so well kind of blew both of our minds. Apparently the old adage, “They don’t make ‘em like the used to,” is absolutely true.

In the end, other than a desperate need for a good tuning, fixing the player wasn’t all that difficult. He found a hose that had an old piece of dried up tape falling off of it, so we replaced that tape with good old black electrical tape. Hey, if someone else thought tape was a good idea, we were happy to go with it, too.


Then Dan the Piano Man realized the bolts and screws [or whatever those things were] that held the roll of music in place had 100 years of gunk built up on them. So, he took them to the sink, washed them up with Dawn soap, and VOILA:


The player piano started playing like a charm. Gives new meaning to the term elbow grease. And it’s proof that Dawn dish soap really does cut through the toughest grease… truth in advertising, people.


Yep. I don’t think it’s the music Riley was adoring. Dan the Piano Man/Dog Whisperer can apparently fix pianos and tough dogs.

***** ***** *****

I loved reading about your friendships and the ways people have loved on you through the little details… there is no doubt that time, love and attention are the main gifts we all appreciate so much.

Now, for the winner of yesterday’s canvas:

Mandy: I LOOOOVE details!! I say "the love is in the details" all the time when I'm making something stupidly detailed for someone.
The first thing that came to mind for me was my bridal shower - my incredible neighbors put together a gorgeous bridal shower, and one of them made this crazy banner that said "Jack and Mandy" in script, another made a bustier cake, and another wrapped plastic-ware in napkins and tied ribbons around each one!! It totally made me feel loved.

Congratulations!!! Email me at with your mailing address and I’ll get it shipped out to you!

Wednesday, June 3, 2009

HDG: Love is in the Details

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If you’ve been reading my blog very long, you’ve probably noticed me referring to my Faith Sharing Girls… and now you get to see their cute mugs for yourselves! Meg, Susie, Deb and Leslie are phenomenal women who show up at my house every other week to participate in faith sharing, chatting, eating and just being all around great friends. I’m so incredibly blessed.

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This is a photo of Susie’s mom, Linda, and Meg. Linda is the one who gets my groceries for me every week and puts up with Riley’s constant longing for attention every time she walks through the door. Because Meg is the only one in the group that doesn’t have a May birthday [Leslie and I were actually born on the same day], she and Linda decided to do a lovely surprise birthday dinner for the rest of us.

I was in on it, of course, since it was at my house, but the other three girls didn’t have a clue. Being in on it was kind of a present to me, because I SO love being in the know. :)


Linda used to run a bed and breakfast before she moved to town, and showed up at my house with her own dishes, silverware, dainty glasses and everything. She loves collecting antiques and has the loveliest things… and it certainly changed the look of my table.




The linens were given to her by her friend Dixie, who had brought them back from a trip to Italy. Trust me, when I found that out I was tempted to move my plate to my lap so anything spilled would land on my jeans instead of the table cloth. That Linda is obviously a trusting woman.

I’m sure some of you are looking at that table and noticing the fine stitching on the linens, the value of the plates or stemware, or the delicate pattern on the fork. And they are precious. But what I see is the love in the details.

It’s present in the way Linda and Meg thought about us, how they took joy in making us feel special. How each table piece was chosen, not to display Linda’s pretty things, but to display the affection she feels for each of us who love her daughter.

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Each one of my friends that sat at the table that night have the same qualities about them. They love in the details. They show up at my house every other week, not because they don’t have someplace better to go, but because they don’t want to be someplace better without me. When we sit in my red room to go through the chapter we’ve read, they sit in the spots where they know I’m not comfortable and leave the comfortable chair for me.

They leave their busy lives and faster pace behind them at the door and settle into my slower moving way of life. They don’t rush me if I’m out of breath while I’m talking and they fill me in on conversations they all understand because they see each other and out and about, but I miss while I’m here in my home. They show their love in the details, and they do it in an unassuming way that could easily go unnoticed.

But I notice. Every little bit of it. And I am grateful.


Susie was giving me a hard time because I was taking photos of everything… the food, the salt and pepper shakers, the linens. I was capturing each detail to show all of you, and also so I would never forget them myself. Some may simply see a plate of food, but I see the love in the details.


And apparently, so does Suz. I loaded photos from her camera onto my computer later that night so I could see pictures from a friend’s baby shower I had missed. She took detailed photos of another friend’s new home, of people and decorations and… yes, the plate of food they were served.

My first thought: “Oh, I’ve taught that girl well!” But really, I haven’t taught her a thing. She was just loving me with the details, as they are all so good at doing.

IMG_7386A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope.”

I can’t imagine any details more important to friendship than prayers, love and encouragement, which is why this canvas fits my friends so perfectly. I’m passing it along to one of you today so you can hang it on your wall as a reminder of how to be a great friend, or pass it along to someone who has been all of those things to you. I’m lucky I didn’t need the quote to teach me a thing… I learned it from the best of them.

To win today’s canvas, leave a comment telling me how someone has shown you love by paying attention to the details. Make sure you comment before midnight CST, and I’ll post the winner tomorrow. [Only one comment per person, please.]