Back in the Saddle

For some reason, this seems so appropriate right now. Except I can't whistle. On the bright side (get it?), though, I can still hear every word they're singing, at least for now. Hope you all find a way to look one the bright side today. :)

Another Bump in the Road

La la la la....I can't hear you. No, seriously. I can't hear you. Well, I mean I can hear you, but just not real good. And I can't always make out what you're saying.

You see, apparently my brain has decided that it doesn't really want to send sounds to my ears so I can clearly make out what people are saying. I knew the hearing in my right ear sucked. It's been that way for about 10 years--since this whole MS thing started. But now my left ear's decided it wants to get in on the action.

I started noticing it when I was in noisy places. It became harder and harder for me to hear what people were saying, and you can only say "what?" so many times before it gets a) embarrassing and b) annoying to whoever is trying to talk to you.

According to the ear doctor, what's happening is the noise is getting in my ear, but just not getting processed by my brain. My ears are fine. My brain is not. As if that's a shocker to me. That's why when I'm in a crowd or someplace like a noisy restaurant, or even a meeting, it's hard to hear. My brain is trying to decifer all the information it's receiving and basically just freaking out and making it all sound like Charlie Brown's mother on the phone.

So what to do? What to do? Well, the doctor says it may get better. Or, it may stay the same. Or, it may get worse. Real definitive answers, right? I seem to get that a lot with doctors these days. He said in a few months we could look into hearing aids and see if that may help some. But it might not.

But for now, I guess I'll have to pick myself back up again and keep moving forward. Sometimes, like now, it's just a little harder.

Take Care of My Crib

Yesterday we took down our crib for the last time. I cried the whole time. It's going to a good home where it will be put to good use. But the problem is, see, it's not in my home...with one of my babies in it. And that's hard. But it's time.

To the couple putting their baby to sleep in that crib, take care of it. I know it may not look brand-spanking new, but it's been well used, loved, and taken care of. Let me tell you about its history.

It's 13 years old. We excitedly got it when we found out we were expecting our first child. We really couldn't afford it at the time--it was a pretty high-end purchase for us--but we wanted our babies to have a top-of-the-line bed. Sometimes I would go into the nursery and just stare at it before Maddie was born. I'd arrange and rearrange the blanket and stuffed animals awaiting her arrival. Now we're filling out high school registrations for her.

When she decided to escape one day, we converted it to the daybed, which she also bucked. We dismantled it and put it in storage for the next time.

When Alex came along, he didn't spend much time in it the first year. He was sick, you see, so he stayed in our room most of the time. But in time, he also made his way into the crib, where he treated the mattress like a trampoline. But don't worry, we fixed the springs he detached in the process, so it's fine now.

Then there was Riley. If you see the teethmarks on the side of the bed, that would be from her. Her height was just at that level and she used to chew on it when she woke up before we got her out. Never crying, never yelling, just standing there chewing when we'd walk in.

And finally came Kacey. Thanks to this damn disease, I knew she would be my last. Not by choice. In fact, I was already pushing the limits of my MS by foregoing treatment so I could have both her and Riley. My brain and body knew it was time. My heart still doesn't.

It was while I was out of town that I found out she had left her crib for a big-girl bed, never to return again. I'm not taking it well. So yesterday when I dismantled the crib and loaded it up to be delivered to you, I was closing a door I wasn't ready to close yet. But I send it to you with love and hopes that years from now, you, too, will be able to remember all the times you laid your baby to sleep in that crib. I know I do.

Time Out, Please

As I write this, I am sitting in the back of my car handing out candy for Halloween. Maddie is at her friend's house. Alex took off with his friends and one of their dad's, and Riley and Kacey are with Mark. It's just one more example of how things are changing--too fast.

I remember when I could take a picture of all of them in their costumes. Now kids are missing, and other friends have moved into the photo. It's different, and I'm having trouble adjusting.

Over the past couple weeks, Mark, Maddie and I have gone on two high school visits. High school. As is not grade school. No, this can't be happening.

Last week, Kacey climbed out of her crib--forever--and straight into a "big-girl bed." And there she has stayed ever since while an empty crib sits across the room. This weekend we will be dismantling it--never to be put together by us again. It's breaking my heart.

Now, it's not like I didn't realize that changes like this were going to happen. I've heard all the advice to relish the time you have with your kids. As Gretchen Rubin, author of the Happiness Project, points out, "The days are long, but the years are short."

I've tried to hold on to each tender moment and milestone. But lately, I'm losing my grip. Big girl beds, high school applications, first Communions, graduations, friends replacing parents. Life is whizzing by too fast. And I don't like it. Not one bit.

In Search of Slogans

So when I took part in the breast cancer walk a few weekends ago in honor of my awesome sister-in-law, I noticed quite a few catchy slogans concerning breast cancer. I'm sure you've seen some of them:
"Save the Ta Tas."
"Hell, yes, they're fake. The real ones tried to kill me."
"Squeeze a boob. Save a life."
"I'm here for the boobs."
"Walkers for Knockers."
"Saving Second Base."
 And the list goes on and on.

So, I thought, why not make up some of my own catchy slogans for MS. I can develop them now and present them at the next MS walk. It can't be that difficult, right? So, here we go:

"Save the Myelin!" What? Not the same punch as Ta Tas?

O.K., well how about, "Hell, yes, I'm on immunosuppressants. The lesions are affecting my body's ability to transmit nerve signals." Won't fit on a shirt? All righty, then. Hope 'bout this?

"Get an MRI. Maybe diagnose MS." Hmm, not real catchy.

"I'm here for the brains." And I wonder why we can't get as much attention.

"Walkers for nerve endings" No? "Walkers for brains?" That's kind of creepy, isn't it?

OK, OK, OK, I got it. How about "Saving home plate." See, cause home plate is kinda like the brain of the baseball field. It's where all the action takes place and everything. Get it? Oh, nevermind.

Wait, I have an idea!!!! Orange is the color of MS awareness, right? Well, how about "Orange you glad you don't have MS?" Perfect, right?

Fine.  If you don't like any of my ideas, I dare you to come up with your own. Those breast cancer people have a lot of money and probably someone whose job it is to sit and make up their catchy slogans. I don't.

Watch Your Words

The other morning I stopped at the local gas station to get myself a fountain Pepsi. The workers there and I are familiar, but nothing deeper than a gas station/customer kind of relationship. As I was filling up my cup, one of the workers looked at me and asked if I was having another?

Another what? I thought. Another drink? Is my caffeine addiction that well known?

And then I saw her look at my stomach and it clicked. This is the same gas station at which I sometimes stopped during my last pregnancy.--Yes for Pepsi. Don't judge. But back to the story at hand.--Oh, O.K. She thinks I'm pregnant again. Awkward.

No, I answered as politely as I could, expecting a profuse apology in reply. Nope. Crickets. All righty then. I grabbed my drink and beelined for the register.

I guess I shouldn't be surprised. It's not the first time I've had someone say something inappropriate to me. And I'm quite certain it won't be the last. It happens all the time concerning my MS. Usually I can roll with it. But there are sometimes I wish people would stop and take a moment to think before they speak.

Here are just some of the things I've had said to me:

* "At least it's not cancer." No. No, it's not. And for that I'm grateful. But it still sucks.

* "Must be nice to be able to take a nap during the day." I wish I didn't have to. But, having said that, maybe you should try it. Doctors recommend it.

* "You don't look sick." Why thank you. I feel like shit.

* "There is a reason for this." Really? If you find out what that is, could you please share it with me? Because so far I've gotten no message from God.

There are many more, but I won't bore you. So instead, I leave you with this: Please don't start any rumors. I'm not pregnant, apparently just fat. Thanks for noticing, Mrs. Gas Station Store worker. It certainly made my day. Not.

So Much for Swimsuit Modeling

The other day I ran my hand over my arm and noticed something I hadn't paid attention to before. On the backside of both of my arms, where I used to do my injections before they became too painful, were tiny little dents. They didn't hurt, but I certainly could feel them.

Then I checked my stomach, thighs, and hips. Yep, yep and yep. I remember the nurse who came to teach he how to administer my shots mentioning something about lipoatrophy. Because it's such a weird word, I didn't bother listening or looking it up at the time. I was kinda more concerned/interested in the whole injecting myself with a needle thing. Silly me.

Well, since then I've learned exactly what lipoatrophy means. It means the destruction of fat cells in localized areas where the medicine has been injected. Destruction of fat cells? Woohoo! Oh, wait. What? When the fat cells are destroyed they leave a crater behind in the skin and underlying tissues. And it's permanent? Crap.

So, O.K., let me see if I understand this correctly. I have lesions on my brain. I have seizures. I never know when or where this disease is going to pop up. I take this medicine to try to counter all those things and now it's going to leave craters all over my body? What the hell?

And no matter what I do they will never go away? So I will never have a swimsuit modeling career? Or wear sleeveless tops? Or rock belly-baring midriffs? Oh. Wonderful. Good to know.

But that's O.K. Maybe swimsuits are out, but certainly there's gotta be a niche market for turtleneck and high rise jeans models, right? If so, me and my lipoatrophy are all over it.