MS Connection Magazine - My Kryptonite

I really don't know why I read this magazine. True 'nuff, there are a few things here and there which are informative. Like how, back in the summertime, I noticed they were giving away Dorney Park tickets and celebrating a day for ms awareness. You figure, you should get at least something for your trouble, right? Be that amusement park tickets or a "membership card", like they were pushing last month. They'll really be talkin' my language when they offer Flyers tix, or at least Def Leppard.

The main article is entitled "Staying Up In Down Times". Why does this title remind me of certain commercials that appear on your tv around dinnertime or during sports events? The kind you're diving across the room to change the channel so your kids don't ask you what that pill is for? I digress. The REAL plot of the article is about working, ms-havin' folk. I was fine until I read this:

"Sandy tried a few careers before she found her current one. 'I just could not do the work,' she said of her previous job as a special education teacher. 'I had a 60-hour-per-week schedule, and I had severe fatigue.' So she switched to administrative work. She was let go from her teaching job, she feels, because of the cost of her health insurance."

Ouch, ouch, and ouch.

I'm trying NOT to see myself in "Sandy". I've tried a few careers. My job now? Educational therapist for children who learn differently. My work week? 60 hours per week. Fatigue? Shhh! There's one saving grace for me...I'm not on the school's health insurance. Whew!

So anyway, this article sparked fear in me. There are days I doubt and wonder how I'm going to get through the week. Then I begin to doubt further, playing through "what if's" that I won't even mention. I see my grandmother, who has a solid 40 years on me, working and hanging out with her friends and wearing her fancy clothes and taking her casino trips...and I think to myself, will I be able to do all that even 10 or 20 years from now? Well, I won't be wearing fancy clothes, not unless my stylish/pretty friend gets me on What Not To Wear. Suffice to say, I'll at least have good socks on. But seriously, people always say, "you're only as old as you feel!" Yeah? Then most days, I'm eligible for a senior discount, mmkay?

It's scary sometimes, no matter how much I will myself NOT to consider the future. When I read this magazine, it often results in an, "oh my goodness, I have MS!" sentiment! It's like reliving the dx over and over. Every pain is a little more noticeable, every eye twinge is more annoying, every trip to the bathroom is more inconvenient, and every tingly/fuzzy is more aggravating.

So what's a girl to do? Blog, of course! I love to blog. And I love to blog with a cup of Constant Comment tea in front of me and Christian music playing. As I was typing about my fears, I heard a song come on that I've not heard before tonight. The line that caught my interest, in between typing, was, "be not dismayed whatever be tide, God will take care of you. Beneath His wings of love abide, God will take care of you." So I'm taking that as my cue to put MS Connection magazine down...and pick up my Bible. Right after I finish this cup of tea, because it's just that good...

http://www.metrolyrics.com/god-will-take-care-of-you-lyrics-plumb.html

Why I Love Socks...

Aren't socks great? I mean, if you've never thought about it...just stop for a moment and reflect on the beauty of the sock.

Socks are great, because they are:

- unassuming! A sock will never expect to be a mandatory part of your wardrobe. They're okay with being bypassed all summer long while you carelessly enjoy frolicking barefoot or in sandals. They respect that.

- free spirits! They go in the wash, they come out...or not? It's all good to a sock.

- underrated! Many people don't consider the sock, but I do. In fact, it's one of the most thought provoking aspects of my wardrobe. Socks match the top...every time. It's just good planning, as well as a sign of high intelligence.

- usually on sale! 4 for $10? I think I will, thank you!

- filled with personality! Ever see some of the designs stitched on them? I found a pair on the rack at Dress Barn this weekend. Thick tan socks with stiletto shoes stitched on them. That's deep.

- a barometer! The perfect compliment to one's personality, perhaps even an indication thereof. Feeling blah? Go plain brown. Feeling spicy? Any sock w/stiletto shoes etched on them...because you can, that's why!

But my favorite thing about socks? I don't have to take them into a dressing room, strip down in front of the funhouse mirror - the one that adds 20lbs (that's what I tell myself) - to see if I look fat in those, or those, or those.

I have a friend, a very stylish and pretty friend, who has told me in the most loving of ways that I'd benefit from being on What Not To Wear. I don't disagree, as I'm sure it may do me good to ditch my 2x-too big sweatshirts, baggy jeans, and canvas Nikes with a hole worn in the toe for clothes that fit me. Throw my hole sneaks away? No way! No one's thrown me out and I've got holes in my head! True enough, I don't wear that ensemble to work each day, but it is a bit underachieving of me to have a main goal, each morning, after full physical inventory of function and pot 'o Dunkin', to make it out of the house in a matching outfit. Sometimes, just making it out of the house is a goal in and of itself.

Funny, said stylish/pretty friend and I joked about me going on the show again this morning over breakfast. Ya know, where I ate approximately 3lbs of fried potatoes in a sitting? Maybe it's really not the dressing room mirror afterall? Anyway, she said she could nominate me and that, hey, it's $5k toward a wardrobe! Mmmmmm...tempting, but even I couldn't find $5k worth of socks I liked THAT much!

Socks...the new black diamonds!

Today's My Little Girl's Birthday!

Isn't it a great time of reflection the birthday of your child? You go right back to where you were and all the emotions that swirled around at that exact moment. Cool, right?

I woke up this morning around 4am for my 3rd bathroom break. I always do my best thinking when in the bathroom and, thankfully, spend a great deal of time there. So as I patiently awaited my bladder's response to the "gotta go NOW" sensation I'd had 5 minutes prior, I got to thinking...I remember this day 12 years ago.

I wish I could say it was all huge amounts of bliss, but it wasn't. I was scared out of my mind. I was about to become a mother...the next morning? Me? You've got to be kidding...

I had been placed on bed rest only 4 mos into my pregnancy, but "bed rest" to me meant trying to get to bed before midnight. I was dx'd with pre-eclampsia around then, and was terribly ill throughout the entire experience. But I was managing a customer service dept in a large company at the time, as well as house and home by my lonesome (sorry, honey...love you!). There was no time for passing out, sky high blood pressure, eye floaters, questionable kidney function, and throwing up the point of dry heaving. Gatorade ice cubes were my sole source of nutrition for a good while. When I was too sick to go to work, I did things like hang the laundry. Pass out in the yard? Sure! As long as those towels could dry, it was worth it. My condition worsened to eclampsia, but it still didn't slow me down. Finally, my doctor explained just how serious the condition was. She literally yelled at me during one of my many stress tests. Wow. Mmmkay...lady, you're here (holding hand up high) and I need you to be here (hand at eye level). Okay, so you're saying I'm putting my life and my baby's at risk and bed rest means lay still, on left side, and try to stay calm. Stay calm while I'm being replaced at my job, stay calm in the avalanche of a marriage we had at the time, and stay calm while I then began to understand just how stupid I was for not listening to my doctor. K. I'm on board!

I was able to choose the day of my surgery, so I went with Friday the 13th. Always a lucky day in my family, but not for that day's hospital staff. It took 3 nurses before one got lucky enough to anchor the IV (I was hugely dehydrated) and the anesthesiologist a total of 7 sticks to land the block. I told him on the 6th stick n' fish, as I was dry heaving and sweating profusely from the pain, that I was going to punch him straight in the face if he didn't get it on the next one. That and my yelling out, "is there anyone in janitorial who can do this? Anyone at all?" He obviously did his best work under pressure and heckling.

But alas, block in place, my full girth on the gurney, being wheeled into OR with sky high bp, there was a song playing. "You Are So Beautiful" by Joe Cocker. I remember closing my eyes and thinking how beautiful our baby would be, how my parents and grandmom were waiting down the hallway to hear those 3 words "it's a...", and how amazing it would be to be a mother. A short while later, our baby girl was being held near my face. I was trying to touch her, but arms were still strapped down. I said, "hi baby..." with tears streaming down my face. Her response? An adorable little smile:-) It was simply beautiful, every moment.

Then my bp crashed and I don't recall a whole lot other than them rushing my husband out of the room, people in scrubs running around, lots of beeping of machines, orchestrated chaos in the OR, and a female anesthesiologist rubbing my head, telling me to look at her and that I was going to be alright over and over and over...oh well, obviously God thought I had more work to do here.

So I sloshed back to bed, giving thanks for our baby girl, for the past 12 years she's been "on loan" to us...because we feel like they're God's kids first, and He's entrusting them to us...and for getting me through whatevertheheck that was that happened that day. It's quite a ride, isn't it?

Psalm 139:13-18

You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex. Your workmanship is marvelous. You watched me as I was being formed in utter seclusion as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God! They cannot be numbered! I can't even count them; they outnumber the grains of sand! And when I wake up, you are still with me!

Rockin' The Little Cart...

I went to the grocery store today. Yeah, I pretty much go every day, because there's always that one thing I forget...every day. My husband says, "take the list!", and I do...but then I forget it on my front seat. Clearly, going back to my car entails that 58 steps that I might need later in the day, so I go from memory. It's photographic, like a Polaroid! But kind of like one where the picture runs? So I get a few things and the rest are really just disappointing shades of red, green, and yellow...

My grocery store has 3 varieties of carts to choose from. There's the jumbo, the double decker compact, and the race car, which should have a giant orange flag on top so as to alert everyone in the store to the fact that THIS cart cannot steer and contains children who aren't content with regular carts. Ever notice they don't observe rule #1 of amusement park etiquette? Hands and feet inside the cart at all times? Just once, I'd like to take that cart for a trip around the store, sans children. Wonder if anyone would notice?

I always choose the double decker compact cart. It's got a zero turn ratio, is lightweight, sleek, stylish, and 100% ms friendly. I've found that I can fit everything into it that I can in the jumbo, but without the physical exhaustion of manhandling it through the store and away from race car carts with flailing child limbs. Some part of me wishes I could have audible theme music as I walked through the store with my little cart. I'm thinking either Frankie's "Double Dutch Bus" or Janet's "Control" or Prince's "Controversy", because that's what I cause with it. Anyway, another thing I've found is that no one else enjoys my game of "Indulge That Cart" quite like I do.

Today, I eclipsed my own record! I managed to fit an entire week's worth of groceries into my ms friendly Double Dutch Bus cart! How did I do it, you ask? I got in touch with my inner Tetris player. I had boxes this way and that, meat sideways, pizza longways...eggs on top! I had to leave the potato chips behind, because it doesn't count if I have to carry it. I got to the register, already a bit fatigued from the pressure of it all, and drew more odd stares than usual. It felt as if I placed items on the belt for hours straight! People behind me were sighing and shifting their stances. I think they were sighs of jealousy, but I can't be certain.

The cashier completed the sale and angry totalled me. Oh no, sister, you won't shake my groove. I said, as I signed my check, "I just totally rocked the little cart with a week's worth of groceries, first time ever". To which she said, "yeah, good job"...to which I said, through a laughing, ear to ear smile..."next week, I'm going to rock the basket, what then!?!"

What A Week...

If you've ever seen that poem "What I've Learned", you might remember the line that says: "I've learned that your life can be changed in a matter of hours by people you don't even know".

Last week was beyond bizarre. Not because it was different than any other week, but because I lost sight of keeping a sane perspective on life in general. I usually float through each work week with ease. My job is incredibly rewarding, uplifting, and hugely satisfying. There's not a day I wake up, after taking full ms inventory of functioning parts, that I don't look forward to going to work. In fact, I could think of no better career to have than what I've got.

But last week, I lost it. The stresses of life creep up like my own personal Jenga and, if I don't stay in the Word and keep God first, I can feel the swelling in the back of my neck, the jabbing pains in my face and head, and I know it's coming. I've woken "Alice", who feels as if she needs to throw a five star par-tay in my body. This time, she hit me with a major dose of emotional lability (aka emotional incontinence) that nearly landed me in my local psych ward. Thankfully, a friend of mine from school manages that floor of our local hospital, so she may have let me out on my own merit. Or, at the very least, provided me with a good cup of coffee after the breakdown subsided.

So here's what happened. I had an issue with one of our bank accounts and decided to stop in in person to correct it. It's a very long story, but suffice to say it was typical of our luck and the answer was unfavorable. As I was walking out of said bank, all I could think of was how my husband and I have been having our back ends handed to us for nearly a year straight in all things money, and how we work so many jobs and hours (8 W2's sitting on my desk to file for '09, still ain't anywhere close to what we made in '08, but we're thankful for the jobs in today's economy). And that so much of our money is spent on fees, because we never seem to get paid in time to avoid being late. Like if something's due the 10th, we'll not have the money til the 15th. Over a year ago, no biggie. 2010? Biggie. Wasted money that we don't have, wasted hours that we've just worked...for nothing. And when you're me, virtually willing yourself out of bed on many mornings, due to fatigue? It gets to you. I took a fateful trip down memory lane. It made me then think of how much of ourselves we put into our old jobs and how it just didn't seem fair that we no longer had them. See the spiral into the abyss of "Me Me Me"? I forgot about God and how He closes windows and opens new doors. I was feeling more thrown through the window at that point. Train wreck in 3...2...

As I slowly walked the walk of sorrow to my car, I was overcome. Whatever verklempt is, times that by 10. I began to cry, which is something I don't do. My legs became weaker and weaker. By the time I got to my car, my legs quit. So there I was, kneeling on the curb, hand on door handle, crying hysterically. Not sure what came over me, but I yelled, "MY GOD! HELP ME!" (hello, fancy white jacket that opens in back with pretty buckles!) I then crawled into my car, tucked safely in the comfort of my 20% window tint, and completely broke down. What seemed like hours later, and I still don't know how much time transpired, a knock came on my window. It was just some poor guy who was pumping his gas next door and heard my yell.

He asked if I was alright - I couldn't speak. He said it looked as if I was married (had my hands over my face, he saw my ring) - I couldn't speak. He asked if he could call my husband for me - still couldn't speak. Nothing but tears flying, scream crying, and being completely out of control. But then, out of nowhere...I started laughing. Alice! Not now! Not emotional incontinence! I already looked crazy enough to this poor guy. He then asked if he could call an ambulance. Alas, my gift of speech returned. I screamed, "NO! I can't pay for that!" He looked at me like Pee Wee looked at Large Marge when she made that classic face.

He sat there with me for who knows how long, just talking, asking me if I counted my blessings that day. I hadn't. So we did that together. All the while, I flip flopped from welling up with tears to laughing and back again. So I explained to this perfect stranger that, you see, I've got this medical condition that can do this when I hit a level of stress equivalent to the height of dog whistles. Coincidence that this guy was in the place he was at that exact time? Eh, probably not.

So there it was, a person I didn't even know, changing my course. The emotional incontinence didn't stop until the next day, but the blessing is that it did. It won't be the last time it happens, but hopefully...wait, prayerfully...I can keep my eyes on the Lord and not get swirled up in my circumstances.

"...But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, "Lord, save me!" And immediately Jesus stretched out His hand and caught him, and said to him, "O ye of little faith, why did you doubt?" And when they got into the boat, the wind ceased."