Before and After

My friend Kelly and I have a running joke that I should never say, “That’s my plan.” It gets me in trouble all the time. I’ll look at a situation, find the best possible scenario and make it my plan… and then it all inevitably goes to hell in a hand basket. So now we think about the best possible scenario and decide that it sure would be nice, but declare emphatically that I’m totally not planning on it.

Because if it’s a plan… it’s not happening.

After my whole episode of waking up in the kind of pain that made it so I couldn’t walk, I really believed I had been through the worst of it. I made the mistake of having a plan somewhere in the deepest recesses of my brain of how this latest setback was going to right itself, and was positive I’d be on an upswing in no time.

I’m sure you can guess how that’s been turning out.

This past weekend went swiftly to the aforementioned hell in a hand basket, and I think it’s safe to say Saturday was one of my worst days ever. I won’t bore you with the details, but I will say I have no doubt now this is going to be a long road of getting back to my normal self. Or, at the very least, establishing a new normal for myself. Patience and fortitude are going to be my new mantra.

In the midst of all this, I sat here thinking about how grateful I am to have started this blog last year. I really just wanted to see if I still had it in me to write, but now I think it actually took off like it did – and all of you found me here – because I would need this to keep me going in times like these. I would need it to keep me mentally motivated and participating, even when I physically can’t, and even if it is at a different pace.

So, this sporadic schedule of posting is probably going to go on for quite awhile because I’m not making any plans [even in the quiet thoughts of my own head] as to how these next several months are going to go. I know the road I’m on, but I’m still trying to figure out how the heck to walk down it. So I’m going to deal with what comes as it comes, and I’m going to come here to what feels like my reprieve as much as I can to talk to you all. And tell you some stories. And answer questions. And keep myself connected to the outside world. And make sure you don’t forget this nose:

Because really, who could live without that nose?

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And it’s good to remember that in the midst of all of life’s insanity there’s always good stuff, too.

Like the fact that Mom and Dad came for a visit on Friday afternoon, and I put them to work with some heavy lifting. Part of me wanted the couches moved around because of the “different decorating” philosophy I talked about in my last post, but mostly it was because I discovered my flowered couch was a lot more comfortable for me right now. It has one long seat cushion, is more firm and has higher arms to lean against… all of which makes it easier for me to get up and down and is more comfortable for my ribs when I’m sitting up. You’d think cushiony would be better, but I’ve learned it’s not so great to “sink into” furniture.

But I digress… the point here is that I took before and after photos per your request! I have to tell you, it feels like I got all new furniture because the switch makes my house look so different.

Here’s my red room before:

And the red room after:

Riley wasted no time testing out his new couch position:
“Seriously, woman… all this decorating is getting out of hand… will you just leave well enough alone already?”

Here’s the piano room before:

And the piano room after:

And here’s a shot just so it makes sense why I call it the piano room:

I now think I’m officially done redecorating/rearranging, which is probably a good thing. I actually had the thought pass through my mind to paint over my wall of doodles when I get stronger and change that up, but I think I would totally regret that impulse. Best I quit while I’m ahead and just enjoy the comfort of my “new” couch, don’t you think?!?!?

“Change one more thing and I swear I’m leaving you…”

Yep. Riley agrees.

Brought to You by the Letter “D”

Oh man, this was the perfect letter for this week! You won’t believe how easy it was to choose one of your suggestions to work on for the A 2 Z installment … Decorating.

Yes, I know you’re all scratching your heads. I’m barely functioning for a month now and somehow decorating fits perfectly into my life in the midst of it all? Well, you have your ways of coping… and apparently I have decorating.

The first week or so after I had my outing was a rollercoaster. Well, it’s still a rollercoaster, but I’m at least getting used to it being that way now. The first week I was so weak and tired, but the first few doses of steroids made me so fidgety, antsy and unsettled – which is a weird combination. Couple it with the fact that I was looking around my house and realizing I was going to be looking at the exact. same. thing. every. day. forever… and you have a girl who might have been going a little stir crazy.

Stir crazy, but without the ability or energy or air to do anything about it. Not that I let that stop me or anything.

I’m someone who likes to fix things, so when life is completely unfixable I tend to look to something that can be done. I need to give myself the power to accomplish something regardless if it’s important or necessary, simply because doing is better than stewing. [That was totally an accidental rhyme, for the record.]

On one particular day, every time I had to get up off the couch to fetch something or go to the bathroom I would take decorations off my end tables and furniture, set them on George and wheel them into my main living room where I would set the decorations in the middle of the floor. It took all day, but by the time I went to bed that night all the decorations from my piano room, bedroom and red room were in a pile – and my rooms were bare.

I kind of enjoyed it for a minute because apparently, when you can’t breathe very well, having things looking cluttered makes you feel claustrophobic. Mostly, it was just good for my sanity to feel like I was somehow starting fresh.

Which is what I did the next day.

I did the same process, only in reverse. Every time I got up I would wheel George to the stockpile and try to make sure that I put decorations in different rooms than they originally came from… you should so try it sometime. It’s amazing how you don’t appreciate things that you pass by all the time, but see them in a totally different way when moved around. The “re-decorating” part took a couple of days, partially because I was getting more tired as the days went on and partially because I tend to futz about when decorating. I’m still moving little things here and there, probably more for distraction than actual aesthetics, but that’s ok with me.

Mom and Dad are going to be coming for the day on Friday and I think I might even have them switch my couches from one room to another. Not because I think they’ll look better, but because it will look Different. And right now, making things look different is making me sane.

Different Decorating.

It’s the latest in coping mechanisms… I’m sure professionals will be recommending it in no time.

Ok, people… throw me some “E” suggestions for next week in the comment section. And before we go, Riley and his cute shirt that my friend Leslie gave him would like to wish you a Happy Fourth of July!!!!

Don’t forget to “Paws for Independence!”

Facebook Interview

Hey there, peeps…

Just wanted to check in with you all… I can’t even tell you how I felt when I sat at the computer and read all of your comments this week. It’s absolutely ridiculous how lucky I am to be surrounded by such kind and loving people. So many of you talked about how you feel like we’re friends even though we’ll never meet, and I have to tell you I know exactly how you feel. It’s not always easy for me to tell people about it when things are rough, but I have such a real sense of friendship with all of you that it just didn’t feel right not letting you in this part of my life as well.

I wrote about it for you, but in the end I’m the one who was given so much by your comments. You all help me more than you know. So thank you for that.

Ok, onto today’s post…

I still haven’t written anything new, so this totally makes me feel like I’m cheating on a college paper or something… but here for your reading pleasure is a random questionnaire I took on Facebook when I first joined it a few months ago. I don’t normally do this kind of stuff on Facebook, but I’m kind of glad I did this one so I have something fresh to share with you. :)

Hope you enjoy some random facts, just for fun…

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Do you believe a good life is attainable? Or is it something that is out of our control, i.e. subject to luck etc.
totally attainable, if you choose to love the life you have

Beach or mountain?
beach

Left-handed or right-handed?
right

Close your eyes for a moment, who pops into your head?
Nicole and the twins [I keep forgetting to ask her if it’s ok to show them on the blog or not… people, they are SO CUTE.]

Do you say "I love you" in the relationship?
if I love the person then I say it all the time

Aliens have landed and selected you to visit their home planet. Do you go with them?
sure

Describe your perfect Sunday morning?
I loved my old routine of singing at church and then eating at Panera with my friend Kelly and her family

If you could be successful at any job in the world, what would that job be?
writer

If you could live anywhere in the world where would it be?
my impulse is to say Hawaii [even though I’ve never been there], but anywhere by a lake would be good

If you could be someone else for a day, who would it be?
Riley, then I could figure out why he pees in the kitchen

If you have friends coming for supper what would you cook?
a takeout menu

What makes you cry?
not a lot. I usually only cry if I'm exhausted

What makes you laugh?
my friend Susie… she doesn’t think she’s funny, but she is

If you were an animal in the wild, what would you be?
scared

If you won the lottery, how would you spend your millions?
I'd build a condo that had tons of windows and a skylight so I could feel like I was outside. Then it would be all about setting up trusts for nieces/nephews and charity

If you could travel back in time, what mistake(s) would you want to correct?
some incredibly bad hairstyles

Do you believe that the cup is half empty or half full?
half full

Who was your hero as a child?
bionic woman [I wrote about my obsession here]

What do you do for fun?
be with friends. laugh. drink. eat. tell stories. laugh some more.

Are you an outdoor or an indoor person?
I want to be an outdoor person but am obviously meant to be an indoor person

If you had only six months to live, what would you do first?
start asking people to come visit

What 3 words would your best friend use to describe you?
gives her all [at least I hope she’d say that]

Where do you see yourself in five years?
I don’t have a clue

What are you most proud of in your life?
I'm most proud of the people in my life

Do you own any pets, and if so what do you have?
YES... Riley the wonder dog [he kind of owns me, really]

Do you have any tattoos, and if so what and where?
no, but I'd like one

When do you plan on getting married?
never

Get the number or give the number?
give the number

How do you feel?
with my fingers [that’s totally my Dad’s favorite line]

What size shoes do you wear?
7.5 or 8

Water or 100% Juice?
water

Would you rather be hot or cold?
cold

Would you rather lose an arm or a leg?
leg

Favorite Place to Eat?
anywhere that's not my house; probably Montage or Texas Roadhouse

Opera, Musical, Concert, Play, Performance, or Other?
musical

Your favorite Disney Films?
is Mary Poppins or Annie a Disney movie?

Why did the chicken cross the road?
because it has no ability to reason and instinct led it there

Juice and crackers or milk and cookies?
juice with cookies

Favorite fruit?
apple

Are you a cat or a dog person?
dog

Would you rather be blind or deaf?
deaf

Define yourself in 3 words...
encourager, friend, empathetic

What is your favorite TV show?
Alias. Best.Show.Ever.

Kill the spider or let it out?
kill it

Walking past a beggar, spare change or ignore?
spare change

Where do you want to travel next?
to my patio. and then to a friend's house.

What would you do if Michael Jackson asked you out?
laugh hysterically [I answered this a few months ago, obviously]

What is your favorite food?
pork chops, mashed potatoes w/milk gravy and corn

Do you read Harry Potter books?
yep… kind of obsessed with them

What is your favorite place?
being at the lake

If you could have one super human power what would you choose?
the power to lose weight at will

Have you had a beer in the last week?
nope

Vitamin Water or Gatorade?
I haven't tried Vitamin Water, but I'm guessing I'd like it over Gatorade.

Flip flops or sandals?
sandals

What do you do on Fridays?
write a Flashback Friday blog :)

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Ok, just for fun why don’t you tell me at least one random/interesting thing about you in the comment section … that should keep us entertained for awhile.

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:

Click To Play

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.