Yeah seriously, it's a website I kept noticing on my Facebook home page. I decided to click on it and play along. It's a little like E-Harmony, but for people with various medical conditions. Symptom matchmaking. Interesting...
Creating the profile was one part kinda fun, two parts kinda strange. There are 1302 pages with 15 patients per page. 19,530 hole-filled people on 1 website. I found that I'm not the only one sans medication. 764 patients use "prayer" as their first line of defense. 45 are on the gluten free diet. It's nice to know I'm not alone. My other treatment is high levels of vitamin D. I receive this treatment on my back deck, radio on max volume, smoothie in hand. It's really the only way to do it:-)
The site assigns you a little man, which is supposed to symbolize...you. He looks a little like an Oscar Award statue. I don't know whom to thank, however. Sure, I've got my ideas as to how I got MS. Remember the little red chewable tablets from elementary school? They highlighted the plaque on your teeth so everyone could see you didn't brush properly? If it wasn't those, it was the fact that I drank from a garden hose on a daily basis in spring and summer, and played outside for hours. I'm digressing. There are a series of little blocks for the little man that are color coded. You want as many green ones as you can string together, because that means you're smooth sailing. I plugged in my info and came up with 3 green blocks and 3 light yellow. Light yellow essentially means it's a noticeable symptom, but not worth a dark yellow block. I then went through pages and pages of patients who have experienced MS as long as I have. There are hardly any green blocks. There are mostly light and dark yellows, and a few reds. Did it get me thinking? You betcha.
Sometimes that lady from Univ of Delaware is right, circa 2007, when she told me I deny the disease. I don't always face the facts, I don't often consider the what ifs, and I don't usually give a lot of thought into what symptoms I'm experiencing and properly weight them on a scale of 1-10. It's not that I'm denying the disease, I often just don't have time to spend worrying about it. And when I do have that rare time...and believe me, I do...I have to cite Bible verses to remind myself that it's all in God's hands.
I just received a comment on my profile. A nice gal welcoming me to the group. I'm not sure I'll do well with this sort of forum, but it will be interesting to peek at every now and again. I'm more the blogging type:-)
Monday, May 31, 2010
Sunday, May 9, 2010
Day 16 = Good:-)
So it's Day 16 of the eye flare and I'm feeling pretty well! So well that I actually forgot about that part of my "wake-up physical inventory"!
I can now move my eyes nearly all the way to the left without dizziness. This means I won't have to concentrate on turning my entire body while driving, so as to avoid moving my eyes when looking "left, right, left". It went something like..."pivot, right, pivot".
Looking back at the flare to find the highlight, I'd say it was the day I had "morning bus duty". This is a time where I must be at school earlier than usual, 8am sharp, in order to walk out in the parking lot among the many school buses. The drivers then open their doors and the children rush toward the school. It's similar in theme to like, if you were responsible to walk out in front of the starting gate at the Kentucky Derby? Imagine standing about 20 yards in front of the gates. The only thing holding the horses back from trampling you is the mechanically controlled gates? Except the only thing holding the children back are 1/4" thick accordian bus doors.
So I was cutting it close, because I had to drive so slowly. My son, anxiously looking out the window, said to me, "Mommy, are your eyes better today?" Me: "a little bit, honey" (lying is permitted during flare) Son: "why do you have to get up extra early to do bus duty when you don't feel well?" Me: "Because it's part of my job, honey...just hang in there, we'll be there soon". But his question gave me permission to play the, "if I had VISIBLE symptoms..." game. I then noticed a man on a lawn tractor, backing down a driveway? Bizarre. I thought it couldn't be, had to be the eyes playing tricks. So I kept on slowly keepin' on when all the sudden, it looked as if 3 versions of said lawn tractor were fast approaching my center field of vision, from the left, as I was focusing on the street ahead. This eye flare gives you a Matrix-like effect. But WHOA! BRAKES! This idiot backed out into the street, directly in front of me! As I was sitting there, post brake slam on, catching my breath, man on tractor sitting about 2' in front of the "Chrysler" emblem of my hood, NOT so much as looking at me in acknowledgement...he slowly put the mower back in gear and proceeded forward, returning into his driveway. You gotta be kidding me.
I spent the rest of the drive to school wondering...
Who mows the driveway at 7:45am?
Who doesn't have a sense that they drove into the middle of the street?
Who doesn't realize that, when they drove into the middle of the street, a car is RIGHT ON TOP OF THEM??? Did he have NO peripheral vision for God's sake?
And then I recalled the day I was flying high on Neurontin and decided it a good idea to mow, plunging straight into my own car door. Eh, nevermind my negative judgements, Lawn Mower Man. ROCK ON!
I can now move my eyes nearly all the way to the left without dizziness. This means I won't have to concentrate on turning my entire body while driving, so as to avoid moving my eyes when looking "left, right, left". It went something like..."pivot, right, pivot".
Looking back at the flare to find the highlight, I'd say it was the day I had "morning bus duty". This is a time where I must be at school earlier than usual, 8am sharp, in order to walk out in the parking lot among the many school buses. The drivers then open their doors and the children rush toward the school. It's similar in theme to like, if you were responsible to walk out in front of the starting gate at the Kentucky Derby? Imagine standing about 20 yards in front of the gates. The only thing holding the horses back from trampling you is the mechanically controlled gates? Except the only thing holding the children back are 1/4" thick accordian bus doors.
So I was cutting it close, because I had to drive so slowly. My son, anxiously looking out the window, said to me, "Mommy, are your eyes better today?" Me: "a little bit, honey" (lying is permitted during flare) Son: "why do you have to get up extra early to do bus duty when you don't feel well?" Me: "Because it's part of my job, honey...just hang in there, we'll be there soon". But his question gave me permission to play the, "if I had VISIBLE symptoms..." game. I then noticed a man on a lawn tractor, backing down a driveway? Bizarre. I thought it couldn't be, had to be the eyes playing tricks. So I kept on slowly keepin' on when all the sudden, it looked as if 3 versions of said lawn tractor were fast approaching my center field of vision, from the left, as I was focusing on the street ahead. This eye flare gives you a Matrix-like effect. But WHOA! BRAKES! This idiot backed out into the street, directly in front of me! As I was sitting there, post brake slam on, catching my breath, man on tractor sitting about 2' in front of the "Chrysler" emblem of my hood, NOT so much as looking at me in acknowledgement...he slowly put the mower back in gear and proceeded forward, returning into his driveway. You gotta be kidding me.
I spent the rest of the drive to school wondering...
Who mows the driveway at 7:45am?
Who doesn't have a sense that they drove into the middle of the street?
Who doesn't realize that, when they drove into the middle of the street, a car is RIGHT ON TOP OF THEM??? Did he have NO peripheral vision for God's sake?
And then I recalled the day I was flying high on Neurontin and decided it a good idea to mow, plunging straight into my own car door. Eh, nevermind my negative judgements, Lawn Mower Man. ROCK ON!
Tuesday, May 4, 2010
I Want To Use...
...that motorized jazzy cart thingie in the grocery store. Just once.
I'm on Day 10 of the flare where I get dizzy when I look to the left in any capacity.
Went to get my groceries and was dismayed to find that none of my little carts were available. You know what THAT means. Ginormous cart, herein referred to as "G-Cart". It was taunting me a la Friday The 13th..."ch ch ch ch ch...hah hah hah hah hah". Alright, G-cart. Let's get it on!
I wrestled the hell out of that cart all the way around the store, throwing eye flare caution to the wind, shopping both right AND left sides of the aisles, skidding sideways around corners, knowing I had just a small amount of energy remaining for check out! I got overconfident, borderline careless. I decided to teach it a lesson. I dared to move to the front of it and pull it about by its basket! WHO'S YER DADDY NOW, G-CART!
Wait, what? I feel like I'm forgetting something. O M and G. The 2 cases of bottled water? Aw man. But they're all the way...over...THERE??? (looking clear across the store, becoming dizzy. Thank you, Day 10 of eye flare). Well, I gotta have 'em. Otherwise, I'll face my husband and have to hear him say, "hon, you GOTTA take the list with you...INSIDE THE STORE!" To which I say, "Hey! You're not the boss of me!"
Alright, I got this.
G-Cart and I made the trek to the next zip code to retrieve and manhandle 2 cases of 35 count bottled water. But this time, I was fully engulfed in a double elbow lean.
Next...check out. Load items on belt and pray that gum cracking teens can be bothered enough to bag. No? Oh it's alright, sweetie...let me do it. You're too pretty to work. I gotta double bag anyway. You'll see why later. Following are the remaining steps of my grocery-izing.
- write my check. Handwriting at this point is a series of scratch marks on paper.
- fumble for driver's license with now spasming fingers.
- push G-Cart, which now feels like a tourbus, to the car and unload it.
- drive home without looking to my left.
- drag bags up stone walkway and into house (thus the double bagging)
- put items away
- collapse into overstuffed furniture
With all of this effort and exhaustion, you'd surely wonder to yourself, "why doesn't she just ask her husband to do it?" That's easy. Pride!
Strongly considering the motorized cart thingie. Though I fear I'd experience road rage and pummel the center aisle shopper. You know the one, she's got all day to be there and won't let you by? You don't want to excuse yourself around her, because she should just KNOW that she doesn't BELONG in the MIDDLE! Hey Muffin, commit to a side. K? Yeah, she'd be wondering what hit her.
That was kinda fun to blog about:-) The grocery store is like an athletic event for me. Sometimes I win, sometimes I lose...but I ALWAYS have a good time!
I'm on Day 10 of the flare where I get dizzy when I look to the left in any capacity.
Went to get my groceries and was dismayed to find that none of my little carts were available. You know what THAT means. Ginormous cart, herein referred to as "G-Cart". It was taunting me a la Friday The 13th..."ch ch ch ch ch...hah hah hah hah hah". Alright, G-cart. Let's get it on!
I wrestled the hell out of that cart all the way around the store, throwing eye flare caution to the wind, shopping both right AND left sides of the aisles, skidding sideways around corners, knowing I had just a small amount of energy remaining for check out! I got overconfident, borderline careless. I decided to teach it a lesson. I dared to move to the front of it and pull it about by its basket! WHO'S YER DADDY NOW, G-CART!
Wait, what? I feel like I'm forgetting something. O M and G. The 2 cases of bottled water? Aw man. But they're all the way...over...THERE??? (looking clear across the store, becoming dizzy. Thank you, Day 10 of eye flare). Well, I gotta have 'em. Otherwise, I'll face my husband and have to hear him say, "hon, you GOTTA take the list with you...INSIDE THE STORE!" To which I say, "Hey! You're not the boss of me!"
Alright, I got this.
G-Cart and I made the trek to the next zip code to retrieve and manhandle 2 cases of 35 count bottled water. But this time, I was fully engulfed in a double elbow lean.
Next...check out. Load items on belt and pray that gum cracking teens can be bothered enough to bag. No? Oh it's alright, sweetie...let me do it. You're too pretty to work. I gotta double bag anyway. You'll see why later. Following are the remaining steps of my grocery-izing.
- write my check. Handwriting at this point is a series of scratch marks on paper.
- fumble for driver's license with now spasming fingers.
- push G-Cart, which now feels like a tourbus, to the car and unload it.
- drive home without looking to my left.
- drag bags up stone walkway and into house (thus the double bagging)
- put items away
- collapse into overstuffed furniture
With all of this effort and exhaustion, you'd surely wonder to yourself, "why doesn't she just ask her husband to do it?" That's easy. Pride!
Strongly considering the motorized cart thingie. Though I fear I'd experience road rage and pummel the center aisle shopper. You know the one, she's got all day to be there and won't let you by? You don't want to excuse yourself around her, because she should just KNOW that she doesn't BELONG in the MIDDLE! Hey Muffin, commit to a side. K? Yeah, she'd be wondering what hit her.
That was kinda fun to blog about:-) The grocery store is like an athletic event for me. Sometimes I win, sometimes I lose...but I ALWAYS have a good time!
Saturday, May 1, 2010
Retreat...Sans Spew!
Just getting back after our ladies' church retreat. Like I shared previously, I had a spot in the itinerary as a speaker. I'm so NOT the public speaking type. SO not. But I made it through without spewing, which is a new and fantastic accomplishment!
The topic was "Perseverance Through Faith". Piece o' cake. Okay, not really. Because let's be honest, it's easier to give up, or to have a fecal attitude, or to seek things that will take the pain away - if only for a moment or five. It's hard to always "persevere". Sometimes, it's downright exhausting. But it's necessary. Otherwise, we run the risk of getting on our own nerves.
In this anxiety-riddled speech, I talked about how a person really doesn't need faith to persevere. I was that way for 27 years, so I can totally relate. I felt like I could take on any challenge...all by myself. And then came something like MS. Well, that's something I failed at taking on sans God. Epic fail, to be exact. But accepting the gift that God has given us in Christ, and that's really all it is, right? Simply accepting it? It takes all the pressure off of me. If I allow it to, which is the hard part.
The analogy I wanted to make at the retreat (but didn't, 'cause I forgot and was trying not to spew) relates to learning to drive.
I remember driving with Dad, who found it helpful to yell at me as I nervously navigated the town's narrowest streets. He'd yell, "LOOK AT ALL THESE CARS, YOU'RE TOO CLOSE, MOVE OVER! WHAT ARE YOU DOING? MOVE!" Most times I got in the car with Dad, my stomach would churn, heart would race, and eyes would be focused on everything around me. Good times!
But then, I'd drive with Mom. I remember the time I was 16 and we were going to the shore. She decided to put me behind the wheel. What was she, nuts? I was white-knuckling all the way to NJ, but playing it cool. I remember seeing the construction signs on the highway. 1500ft...1000ft...500ft...oh my! And then I saw them. Cement barriers! Insert theme music from Psycho! Collective scream! "EEEEK!"
They formed a one lane cattle shoot for what seemed like miles. I felt sick and thought I'd pass out or, at the very least, would slam up against them repeatedly, in a side to side motion, until Mom and I were essentially driving on a rolling frame that WAS a '79 Olds Cutlass BEFORE we entered the cement maze of death. Mom asked what was wrong and I told her I was afraid I'd hit the barriers. I'll never forget what she said..."oh, those? Psht. You don't even look at those. Just keep looking straight ahead. You won't hit them. If you just keep looking straight ahead, you won't even notice them". I still think of that discussion, even though the chances of wiping out the right side of my car are much greater now. The true "straight ahead" and my brain's version differ by about 3"...
Dare I get spiritual on Mom's statement? Could I not think of my circumstances as those cement barriers? When I focus on them, I run the risk of making quite a mess of things. Once I come through the Trial Du Jour, I might be dented and like, take the equivalent of a face shot from an airbag. But if I look straight ahead...well, you get the picture. {{{Thanks, Mom}}}
Persevering through faith means you don't hit the wall, 'cause you're not the one driving. And that...is a beautiful thing!
The topic was "Perseverance Through Faith". Piece o' cake. Okay, not really. Because let's be honest, it's easier to give up, or to have a fecal attitude, or to seek things that will take the pain away - if only for a moment or five. It's hard to always "persevere". Sometimes, it's downright exhausting. But it's necessary. Otherwise, we run the risk of getting on our own nerves.
In this anxiety-riddled speech, I talked about how a person really doesn't need faith to persevere. I was that way for 27 years, so I can totally relate. I felt like I could take on any challenge...all by myself. And then came something like MS. Well, that's something I failed at taking on sans God. Epic fail, to be exact. But accepting the gift that God has given us in Christ, and that's really all it is, right? Simply accepting it? It takes all the pressure off of me. If I allow it to, which is the hard part.
The analogy I wanted to make at the retreat (but didn't, 'cause I forgot and was trying not to spew) relates to learning to drive.
I remember driving with Dad, who found it helpful to yell at me as I nervously navigated the town's narrowest streets. He'd yell, "LOOK AT ALL THESE CARS, YOU'RE TOO CLOSE, MOVE OVER! WHAT ARE YOU DOING? MOVE!" Most times I got in the car with Dad, my stomach would churn, heart would race, and eyes would be focused on everything around me. Good times!
But then, I'd drive with Mom. I remember the time I was 16 and we were going to the shore. She decided to put me behind the wheel. What was she, nuts? I was white-knuckling all the way to NJ, but playing it cool. I remember seeing the construction signs on the highway. 1500ft...1000ft...500ft...oh my! And then I saw them. Cement barriers! Insert theme music from Psycho! Collective scream! "EEEEK!"
They formed a one lane cattle shoot for what seemed like miles. I felt sick and thought I'd pass out or, at the very least, would slam up against them repeatedly, in a side to side motion, until Mom and I were essentially driving on a rolling frame that WAS a '79 Olds Cutlass BEFORE we entered the cement maze of death. Mom asked what was wrong and I told her I was afraid I'd hit the barriers. I'll never forget what she said..."oh, those? Psht. You don't even look at those. Just keep looking straight ahead. You won't hit them. If you just keep looking straight ahead, you won't even notice them". I still think of that discussion, even though the chances of wiping out the right side of my car are much greater now. The true "straight ahead" and my brain's version differ by about 3"...
Dare I get spiritual on Mom's statement? Could I not think of my circumstances as those cement barriers? When I focus on them, I run the risk of making quite a mess of things. Once I come through the Trial Du Jour, I might be dented and like, take the equivalent of a face shot from an airbag. But if I look straight ahead...well, you get the picture. {{{Thanks, Mom}}}
Persevering through faith means you don't hit the wall, 'cause you're not the one driving. And that...is a beautiful thing!
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