Sunday, March 28, 2010

When MS Goes Shopping...

Well, it was that time again. Time to try to find my way through the hell that is clothes shopping. You think I'm exaggerating? Dress Barn. Place of gnashing of teeth.

Dress Barn had consolidated skinny girl clothes and sturdy girl clothes. Sturdy girls would typically enter a clothing store and immediately bear right. There, we could find clothing in our size, without having to wade through skinny girls. We had sturdy girl camaraderie. We didn't make eye contact. We minded our business. But Dress Barn thought we should all get along. Guess what, Dress Barn. We don't.

Skinny girls, you know I love you, but I really don't enjoy seeing your top in the very front of the rack, compared to my sturdy girl top in the back. My shirt sticks out 3" on each side of yours, which is how I know about where to begin looking for my exact size. I also don't enjoy hearing you say to your fellow skinny girl, as you whisk a top off the front of the rack, hold it to yourself, and squeak, "omg I love you think my boobs would look bigger in it?" Out of my way, muffin. I'm looking for a shirt that does the opposite. ...You're makin' me want to eat.

Why is it that skinny girls shop in numbers, anyway? Sturdy girls don't. We don't need anyone else to tell us we look good in that shirt. I know I look good in that shirt if it covers my stomachs. If I can fool you into thinking I only have one stomach, then that's the shirt for me. But I did have a friend join me today. MS! Glad it could make it, I was a little lonely.

I'm on the other side of a flare that was passing through over the past week. Stupid weather change. My flares usually end with paraesthesia and extreme hypersensitivity to touch. Like husband with close cut mustache/goatee who likes to kiss me on the top of the head or cheek as he walks by? Yeah, his facial hair feels a lot like Hellraiser's needle face against mine. I shaved my legs today. I won't tell you how painful that was. Now back to Dress Barn...

I take a plethora of shirts into the dressing room, where the mirrors add 50lbs, and begin the fun. I put the first one on and it had some sort of elastic around the sternum/thoracic area. I'm a chiropractic biller by nature, I refer to things by bodily region. Felt like an "MS Hug". OMG THIS SHIRT IS ANNOYING THE DRESS BARN OUT OF ME! OFF NOW! Try on another. PICKY! OFF NOW! Alright, this one looks safe. Stylish/pretty friend told me that shirts with ruffles up top may be good for me. Wow. That's a LOT of ruffles. Macy's called...they want their float back. OFF NOW! Here's a crinkle shirt. Stylish/pretty friend said those look good on sturdy girls. Wow. Love how it accentuates every single stomach I own, as well as one stomach I didn't even know I had! OFF NOW! Out of tops, time to reload.

Back out to store to put all those clothes back on their respective racks and get new ones to try on. I was thinking to myself, "Good Lord, I wish I could just find something that looked good on me, this is hell." All the sudden, I couldn't remember where any of them went! I stood in the middle of the racks that seemed to reproduce and multiply since I was last out there. I panicked! Sales girl asks, "are you looking for something?" I explained that I just wanted to put all these tops back, but can't remember where they go! She says I can leave them on the rack at the dressing room. Thanks, sales girl. I turn around to head back there and walk dead into the middle of a clearance rack, knocking tops on the floor and having to hold myself up from falling. Everyone turns to stare. I inform all that, "I'm good!". As I'm picking everything up, I find some really pretty tops that were casualties of my mid-rack collision! They were perfect!

See what happens when you talk to God during an innocent shopping trip? You find exactly what you want, even if He throws you straight into it! Now where's the closest ladies' room...

Friday, March 26, 2010

When MS Comes To Work

There's really no choice to be had as to where ms will accompany me, but I'm usually pretty good at hiding it. That's the blessing of "invisible symptoms"! In fact, one of my favorite compliments is when folks say, "I'd have never known!" or "you're kidding! I never would've thought you had ms!"

So today, I tripped on an invisible thing on the floor today in front of a group of students, who then laughed at me. A few minutes later, I misjudged the door jam of my classroom and have a bruise on my arm as a parting gift. I also banged into one of my students, because I was making my way from one end of the room to the other as I was explaining a concept. I decided I could probably explain just as effectively while one spot. Later, I was standing in the doorway of the front office and noticed another teacher wanting to enter, so I moved backwards. I slammed into the $5.99 plastic shelf that holds supplies, making it go all "leaning tower of Pisa", and almost knocking everything on the floor. None of these occurrances were too much for me to recover from, however. Part of me laughed at ms. In fact, I was mocking it. "That all you got? MS, please!"

Today was Open House at school. In other words, prospective parents stop in throughout the day for tours of the campus. I work the front desk for 3 hours from the time classes end until the end of the business day. So it's about 5pm, I'm an hour from the weekend, I've had a Dunkin' Donuts caramel iced latte, I'm in a state of sheer euphoria, I've not done anything stupid in a few hours, I'm feelin' pretty sure about myself. In comes a prospective family. Psssht, piece o' cake!

They enter, I stand to properly and professionally greet them. They do their tour and return, wanting paperwork. HA! I know exactly where THAT is...over there in the file cabinet! MS, you lose again, 'cause I just remembered stuff! I stand up, seamlessly avoid tripping over the wires that are laying across the floor behind the desk, sashay my way to the file cabinet and...THUD!!!!!! STUPID SLIDING DESK THING THAT MY LAPTOP SITS ON! DIRECT HIT TO THE THIGH! IMMEDIATE AND INTENSE PAIN! It was nearly a "WOMAN DOWN!" situation. I buckled.

Ever hurt yourself while you're on the phone, like step on a metal toy or electrical cord plug? And you hold your breath or something so the person on the other end doesn't know? Yeah, that's what I was doing, except come on...they could SEE me! And how do I even pretend that didn't just happen? Because they SO just witnessed! I nearly moved the entire 800lb wooden desk with the force of impact! Times like this I think I should've joined the MS club that the magazine spoke of. THIS is why you need that membership card. I could have said, "wow, that was awkward! Don't be alarmed...I'm a member." :::flash orange card:::

After work, I stopped by our local dairy for some milk and dark chocolate buds. They're my ms medication. Antioxidants. Anyway, there's a sign on the counter about the Walk MS event. I strike up conversation with the cashier/owner and tell her I'm walking the event with a friend of mine. She says she's also walking, her sister has it. I say I do, too. She says, "you're kidding! I never would have guessed!" Awwww. My fave compliment:-) I thank her as I walk toward the door, feeling my thigh injury with every step. I tell her I'll look for her there and, as I'm smiling peacefully, I proceed to trip out the door. Wonder if she wanted to take back what she just said?

Habakkuk 3:19 "The Sovereign Lord is my strength! He will make me as surefooted as a deer and bring me safely over the mountains."

Thursday, March 25, 2010

"I'm Sorry...What Virus Are You?"

"'Cause I'm MS, (insert inappropriate word)!"

Alice. You can't dress her up, you can't take her out. For those who don't know, a quick recap is in order. "Alice" is the name I've assigned to MS as it resides in my body. Alice likes to party, let me tell ya. She and I, years ago, would've gotten along quite well. But we're very different people now. I really wish she'd just grow up already.

Alice has been partying for a couple of weeks now with no signs of letting up. Come on, am I the only person singing "Tick Tock" in my head right now? The party don't start 'til I walk in? Anyway, it's a rave up in here.

Today's MS Symptoms Du Jour are face and head pricklies, no sense of self on the right side (a la slamming into the door jam in full stride as I was getting ready for work this morning), and the sensation that someone's got their hands across my throat, squeezing. And their hands are hot. Hot, squeezing hands. On my throat. All day.

The other thing that gets Alice in a party mood is illness. Other people's illnesses, not mine. None of what I'm about to say has ever been substantiated by a medical professional, so this is purely opinion! If I figure that my body is attacking itself for no good reason, and your immune system is supposed to attack foreign bodies, can you imagine what havoc is wreaked when a virus DOES enter the mix? I think it's something like this...

Alice in Lady Gaga-esque black leather party outfit, having a blast. Strep Throat walks in, let's give him a red Flava Flav suit with a gold alarm clock necklace.

Alice: Um, who are you and how did you get up in here?
Strep: I'm just tryin' to give somebody a sore throat and be out, I've been partyin' all around school and found my way here after a kid sneezed on this chick, so mind yer bidness.
Alice: Oh hell-to-the-no, I run this show!
Strep: And you are?
Alice: I'm MS...(insert inappropriateness)! STEP!

And then, she starts giving commands to kick his simple self to the curb. "Nerves in the face, get to stingin'! Neck, get to swellin' up! And somebody choke this chick...because I said so, that's why! You don't know me!"

So while I do not contract the viruses the kids at school are sent home in droves with, I believe I do suffer from them in a very different way. One of my students sneezes openly, no facial coverage, and all with a half second warning. If you ever want to see a sturdy girl who's closer to 40 than 30 pull off a scene from The Matrix Reloaded, come watch how I move when I hear that half second warning sound. Back flip, egg roll, triple axle, stick the landing...saliva be darned, you can't touch this!

Waiting for the party to stop...waiting for the party to stop...shhhhhhh...

Tuesday, March 23, 2010

2nd Thing I'm Going To Do When I Get To Heaven... run. Run and run. Like a gazelle, I say! First thing I'm going to do is find my Aunt Sandy, hug her for as long as I can, and catch her up on all the years she's been missed here in this crazy world. And to tell her that we really could have used her right about now. But after I do all of that, I'm going to run.

Maybe I long to run because I can't anymore. Running is the new chicken cheesesteak with mayo, extra onion, and sweet peppers. That thing I can no longer have without severe health consequences that result in me being flat on my back in a hospital bed.

I've been noticing this new thing where my mind tells my feet to do something and they give my mind the toe? It's like "the finger", but come on, feet don't have fingers to give. It happened again tonight. Took my kids to visit my grandmother and had both arms full of clothing for her PT rehab stay. I feel like I should specify it's PT so people don't think she's in "rehab". The receptionist says to me, "you can take the elevator, looks like you have your hands full." Oh no no, I'm much too proud to take the elevator. I can scale the stairs, thank you. MS won't have victory over ME! I get halfway up the stairs, mind says, "step up", foot says, "whut?"...and I trip up the stairs, stumble a bit, and nearly fall backwards. Wondertwin powers activate! Form of...SLINKY! Not. Wouldn't it be cool if that were possible? "Meet you at the bottom, kids! :::boing, boing::: Instead, I think that fall would result in me knocking the wind out of myself and trying to hold up 2 fingers like in that 70s movie "Piranha".

I've been thinking a lot about mobility lately. My grandmother recently lost hers in the snap of a finger. They're not quite sure what happened with her, but she's been struggling for the past month. She was fine, driving her convertible and working...and now immobile. I see her laying in her bed and needing help just to get into a wheelchair. It's something I can't even wrap my mind around. How can you go from working to wheelchair to flat in bed?

Satan tells me that could be me at any moment of any given morning upon waking. Keeps me up at night.

On my drive home from visiting her, I thought about times I spent with her as a little girl. She drove me around in her Corvette with T-tops out. I'd come running out of the house to hop through the window, Dukes of Hazzard style! There was the night she babysat me and let me eat the whole bottle of Flintstone vitamins. I ran all night. She was the most popular bartender in fine dining in the 70s and 80s, working 3 different establishments. If my mom needed me to be cared for, I spent that brief time at the end of the bar, eating every last maraschino cherry and talking with the high class grown ups who stopped by for a drink over lunch. I remember taking on the body language. The slight hunched position, holding my coke in the same way they held their screwdrivers and whiskey sours. I knew to turn my soda glass over when I had my fill. Then I'd hop down and run around. I remember how I'd run and play in her backyard, pretending her rhubarb plants were giant venus fly traps trying to eat me up. I'd run and run, throwing rocks at the windows of the old factory behind her house. It was closed down, relax. But I'd pretend it wasn't, so I'd run. I felt fast...agile...weightless. I think that's what it'll feel like in heaven as I run, sans bizarre plants, property damage, and maraschino cherries. It'll be good. Actually, it'll be perfect:-)

I think it's pretty clear what I need to do, besides pondering how cool it would be to morph into a slinky. I think I need to go read my fave Bible verse, 1 Thes 5:16-18, which says...

16Be joyful always; 17pray continually; 18give thanks in all circumstances, for this is God's will for you in Christ Jesus.

The day will come that I run...and not on Dunkin'

Tuesday, March 16, 2010

I'm Vibrating! That Must Mean...'s time for spring! Ah yes, springtime. Flowers blooming...and paraesthesia! Birds chirping...and electric shock sensations in your face! Gentle rain showers...and peeing yourself! Easter egg hunts...and trying to remember where your keys are!

So yeah, I'm vibrating across the entire lower half of my body. I don't mind it like I used to, back when it was so bad that it kept me awake at night. I'd lay next to my husband as he slept, vibrating like a massager was under the mattress. I'd startle him by smacking his arm all, "oh come on, tell me you don't FEEL that!" Him all, " can you stop hitting me?" Sorry, honey...but were you not the man standing across from me who answered to the affirmative when asked, "in sickness and in health"? You did, pal. All you.

I'm also enjoying the "MS Hug". From a website: Sometimes described as feeling like being squeezed by a boa constrictor, compressed with an ever-tightening rubber band, or wearing a chest high girdle, the MS Hug actually does not interfere with the ability to breathe. I have that all across my head. Olivia Newton John called...she wants her 80's style terry cloth workout headband back. Come on, I can't be the only person who recalls the video to "Let's Get Physical" when those headbands are mentioned. Her or John McEnroe.

I had a small accident today at work. Never had that happen before, and was instantly infuriated by ms. Really? I just went to the bathroom 25 minutes ago, and you want to go and do this to me? Really??? I now understand that I really can't put it off when I feel the urge to go to the bathroom. And anyone needing my attention in those moments will just have to wait. Either that, or they'll have to understand that I may be urinating as they speak to me. And really, is whatever they're saying THAT urgent? Well I'll tell ya, my bladder begs to differ. Yes, I really just wrote all that. No, I can't believe I did. My pride went out the window a long time ago, folks.

Fatigue. That's what the doctor feels precedes these sorts of symptoms. I feel as if I could sleep for 2 days straight, but I don't know that I'd be any less fatigued if I did. So what do I do? I drag my tail out of bed, schlep through the house, suck down a minimum of 4 cups of extra strength coffee per day, and do what the rest of us life! So what if I vibrate a little, or have my head squeezed a little, or even pee a little? This is the day the Lord hath made...and I will be glad in it. And dry.

Sunday, March 7, 2010

Puddle Jumping Is The New Zoloft

Well, I wish it was that easy for everyone. But I can tell you with certainty that the above title was true for me today.

I'm having a bit of a rough bout lately. Most times, I just float on...push toward the goal...persevere! But over the course of the past week? No. I've allowed my circumstances to get the best of me and I've been just plain angry. But then happy. No wait, angry.

Reading usually calms me, except when I decided to read this month's issue of MS Connection magazine. Page 12's article "Emotional Toll Affects Relationships". Alright,'s go time. Dr. Lamar Freed, a psychotherapist, says that we can have a dramatic set of mood swings, especially when fatigued. We can overreact to situations, get upset, angry, even giddy. A study shows we have twice the level of withheld anger as the general population, a phenomenon the researchers attribute to nervous system damage. They continue to say that withheld anger in ms'ers makes sense, because we have a difficult time talking about our challenging experiences with someone who doesn't have ms. If we display negative emotions, it frightens people. We cover up our negative emotions, withdrawing...or only try to exhibit positive emotions. Lamar, you tricky, tricky fellow. How doth thou knowest me so well?

How did I feel after reading all of that? I laughed at it, of course! Then I became irate, then slightly amused, but then annoyed, and finally...humored. No I'm kidding, though emotional lability is a familiar friend.

It sometimes requires a conscious effort to not allow the extreme highs and lows to shine through. It's like...I totally know I'm having that struggle at a particular time, but I fight to keep it hidden. The last thing I need is for anyone to know that "Alice" is playing ping pong. I haven't always been perfect at hiding it, however. Those closest to me have surely noticed, but only one has ever been brave enough to broach the topic. How embarrassing THAT conversation was! Once I got over the initial shame of failing at keeping everything in check and being called on it, I attempted to explain how that's one part of what ms looks like for me. When she didn't take my word for it, it was even more uncomfortable! But that's one of the many things I love about this friend. She isn't afraid to ask tough questions, will always give me her initial reaction - unedited, and will then be open-minded enough to listen and digest. Because she has always supported me unconditionally, regardless of whether or not she's in agreement with me, she read up on the subject and realized that yeah - it's real, and it's real weird. What her willingness to "study" has done is opened up a line of communication. While it's not often a topic of conversation, I know that I can be open and honest about the weirdness of my invisible symptoms with said friend. I don't really often share those things with my husband, because you may recall that his reaction of choice is to go catatonic. I think it would be cool if Pink Floyd would start playing as theme music..."hello, there anybody IN there?" God love him, he's the only man for me:-)

Fast forwarding to this afternoon and my extreme annoyance/overall horrid mood, which I really couldn't put a finger on...I decided to call said friend and ask if she felt like going for a walk. Exercise really isn't my first choice, so we weren't 10 steps into the walk before I got the, "okay, what's going on?" inquiry. I answered with what probably sounded a lot like Charlie Brown's teacher. Our walking path was nothing but ankle deep puddles and mud every few feet, all of which became even more annoying to evade as I was spewing forth my host of emotions. How does a true friend respond when you're regurgitating such rawness? I'll tell you how. She suggested we stomp in the puddles..."ya ready? GO!" Instant gratification! Alice stopped her game of ping pong for the moment and my sneakers are still drying on the porch.

The Bible talks about two being better than one and "where 2 or more are gathered in my name, I am there." I can honestly say I'm always in the company of the Lord. Even if I'm alone in physicality, there's always someone thinking of or praying for me. I'm truly blessed to have a husband who loves me in spite of my neurological shortcomings, as well as friends who support me unconditionally...who think of me when they visit parks that have an abundance of restrooms throughout, who will go out of their way to walk next to me when I'm not quite up to emotional par, and who never mind getting a little muddy in the name of emotional balancing. Helen Keller said that "walking with a friend in the dark is better than walking alone in the light". If only she'd have had a friend to walk through the puddles with!