I have one of these scheduled for next week. A trip to my friendly neighborhood neurologist!
It was originally scheduled for the day before Thanksgiving, but I rescheduled. You see, I was all in the spirit of my favorite holiday of the entire year...Thanksgiving! A time to celebrate all that I am thankful for! Since ms isn't one of those things, I just wasn't feelin' it. My rain check is dated 1/12/10.
But all I did was prolong the inevitable. The appointment is still going to happen. I used to have to go quarterly, but talked my way out of that in lieu of 2x/yr, which is now pushing 2x/18mos. We're still going to assess my "progress". Progress, in this case, is not a good thing. The goal is to walk out of something like this hearing, "no change". I feel a lot like NFL coach Jim Mora in the infamous post-game interview when he said, "Playoffs?!?! Don't talk about playoffs! Playoffs? Playoffs?" It works for me. "Progress?!?!?!" Yeah, "progress" my...well, you can fill in the blank.
First, I'll get to share what life's been like since my last visit. Here's the bad thing, or maybe it's the good thing? I never know exactly how to answer that question, because I try not to pay attention to it. Next, I'll get to track an object side to side, up and down, and to my nose. Then, I'll get to close my eyes, reach my hands out, and attempt to touch my nose with a random finger of her choosing. Oddly, she never chooses my angry finger. Maybe I'll ask about that sometime. I'll get to read those really fun numbers in the color blindness book of wonder! I'll get to show off my strength! Throw in a dash of tuning fork for good measure, which is held to my knee caps and ankle bones..."tell me when it stops vibrating". Is it normal to feel that in my teeth? And then she'll reach for a pin...
There's a glass dish filled with safety pins the size of something you'd use on Baby Huey, and I'm going to be poked with 'em in random places. She knows how I despise this part. Once, I asked if I could at least choose my own pin. Like when my mom had to choose her own branch off the tree to be beaten with. To make the game more sadistic, I'm supposed to close my eyes or look away as it's jammed into my skin. "Sharp or dull?" Um...sharp!!!" Am I bleeding yet? Did I get the square? All you ex-Hollywood Squares fans will identify with that one. Next, the back of my hand..."whew, dull". Other hand..."YEOW". What really stinks is when I get all or most of them wrong. That happens almost every time. Yeah, pretty much every time.
It's a long ride home with plenty of time to think, actually too much time. And so when I flunk my many tests and get a little down on myself, I begin to hear the pep talk that dear friend/chiropractor gave me nearly 7 years ago. It randomly replays out of nowhere when I need it most. She told me it wouldn't change the type of mother I am to my kids. She said all sorts of other really great things, but that's the one I hang onto with both hands on that hour long drive home.
She's right, you know. It doesn't change the type of mother I am to my kids. Sure, I might slow them down with my 8 stops by the ladies' room! BUT! I love them with my entire being. I still tend to their needs, still help with their schoolwork, and do my best to see that they have and receive everything they need. While ms changes lots of things, it hasn't changed what's most important to me...the type of mother I am to my kids. Thanks, dear friend/chiropractor...your words are still golden:-)
Wednesday, January 6, 2010
Tuesday, January 5, 2010
'Lil Help?
I remember yelling that quite often in my childhood days. Remember it? You'd be playing ball and throw it into the neighbor's yard as she hung laundry? "Sorry, Mrs. So-and-So! 'Lil help?" Or you'd hit the ball into the next area where other kids were playing? "Yo! 'Lil help?" Before you knew it, your ball would come flying back your way. Well, unless your Mrs. So-and-So was like ours. In which case, she kept the ball. And like, your mom would have to go get it...or, in my case, not.
I probably shouldn't write today, because today is a day that MS is kicking my butt 6 ways to Sunday. Heck, I even capitalized it. But maybe writing today is really okay, because it'll be raw and uncut. MS Mom Gone Wild-esque.
Invisible symptoms. Invisible, because you can't see them. I have no problem telling you how much they suck! I've shared before how, when you see someone in their 30's using a walking aide or a wheelchair, you think to yourself, "Self, how can I help that person?" or at the very least, you try to get out of their way. If someone's slowly walking your way with a slight grimace on their face, however, you'll probably think, "dude, what's YOUR problem?" At least that's what I would think. Today, I am that person...the one with the face.
I have a tingling sensation in my head. Sounds pleasant, right? If anyone's ever been to a chiropractor or PT and had electric stim, you'll get this analogy. Imagine the pads stuck to your head...toward the top left. Imagine the machine on the "fuzzy" setting. Got it? Great. Now turn it up to a setting of 12. There! You've got it! The intensity increases randomly and becomes so strong that my entire head feels as if it's vibrating. And it hurts, too. It's enough to upset my apple cart, but I can deal with it. When you're a migraine sufferer, tingling and vibration is annoying, but you consider yourself blessed that that's all you've got going on in your head! Can I git' an amen on that, fellow migraine sufferers?
I feel like I'm standing on pickers! Well, sometimes. Every 3rd or 4th step, my feet just feel kinda numb...but mostly, standing on pickers. Not fun, but I can handle that too.
It feels like I'm walking in snow up to my waist. Or at least it takes the same amount of effort to move each leg. I have the urge to walk through the hallway here at school and be all, "oomph! Ugh! Whew!" with each step. Somehow I think that may draw attention to myself, which is the last thing I need and/or want.
My hands, lower legs, and feet are ice blocks. In a word? FREEZING! I have "heat" in my room. I put that in quotes, because the thermostat says 68, but I'm telling you it's blowing cold air. My son made the mistake of coming to me to ask if he felt as if he had a fever. I put my hand on his head and it made him yell, "Good Lord, Mommy!!!" Yeah, sorry about that, son. You feel like you're running a fever of about 212. Better get some Motrin on board STAT!
So those are my current invisible symptoms. All I want, besides my pillow...because it's the only thing that truly understands me in times like this...is a 'lil help.
I run the risk, on days like today, of becoming highly offended and angered when I have to do something simple like walk to the opposite end of the building to retrieve someone or something I need to work with. I silently complain about it. "Yeah, let me walk alllllllllllll the way down there to...(insert task)...I feel GREAT! UGH!" Each step takes effort and I've already psyched myself up, all prior to 7am, to get to work and give my whole self to the tasks at hand. Nowhere in that repertoire was walking around to pick up this or that. My ego yells, "HEY! 'Lil help!"
I run the risk, on days like today, of making MS bigger than me and bigger than my God. Confession time! During my morning coffee, all I could think of was that I had 10hrs worth of work to put in, 2 commutes between buildings, then making sure I got my kids to their events tonight. I didn't once remind myself that today's the day the Lord has made. He got me up out of bed, so He must have work for me to do. If He was done with me, I wouldn't be here right now. I tell Him, "but I hurt and I tingle and I'm cold and I'm tired and..." And He says...well, He says nothing. At least nothing I'm being still enough to hear.
I run the risk, on days like today, of not remembering exactly how blessed I am. There are hundreds of thousands of folks who would trade places with me in a heartbeat. So what if yesterday and today are crappy days, right? Collective, "right!"...c'mon, I'm convincing myself here, as well as you! Tomorrow will be better, because it almost always is. I need to remember that I have a job to walk around at, legs that are still carrying me - no matter how they may feel, and my old faithful pillow, which will be patiently awaiting my return this evening! But most of all, a God who loves me enough to put up with my complaining and who will see me through to a better tomorrow.
In the meantime, I'm still wanting just a 'lil help! I'll never learn! HA!
I probably shouldn't write today, because today is a day that MS is kicking my butt 6 ways to Sunday. Heck, I even capitalized it. But maybe writing today is really okay, because it'll be raw and uncut. MS Mom Gone Wild-esque.
Invisible symptoms. Invisible, because you can't see them. I have no problem telling you how much they suck! I've shared before how, when you see someone in their 30's using a walking aide or a wheelchair, you think to yourself, "Self, how can I help that person?" or at the very least, you try to get out of their way. If someone's slowly walking your way with a slight grimace on their face, however, you'll probably think, "dude, what's YOUR problem?" At least that's what I would think. Today, I am that person...the one with the face.
I have a tingling sensation in my head. Sounds pleasant, right? If anyone's ever been to a chiropractor or PT and had electric stim, you'll get this analogy. Imagine the pads stuck to your head...toward the top left. Imagine the machine on the "fuzzy" setting. Got it? Great. Now turn it up to a setting of 12. There! You've got it! The intensity increases randomly and becomes so strong that my entire head feels as if it's vibrating. And it hurts, too. It's enough to upset my apple cart, but I can deal with it. When you're a migraine sufferer, tingling and vibration is annoying, but you consider yourself blessed that that's all you've got going on in your head! Can I git' an amen on that, fellow migraine sufferers?
I feel like I'm standing on pickers! Well, sometimes. Every 3rd or 4th step, my feet just feel kinda numb...but mostly, standing on pickers. Not fun, but I can handle that too.
It feels like I'm walking in snow up to my waist. Or at least it takes the same amount of effort to move each leg. I have the urge to walk through the hallway here at school and be all, "oomph! Ugh! Whew!" with each step. Somehow I think that may draw attention to myself, which is the last thing I need and/or want.
My hands, lower legs, and feet are ice blocks. In a word? FREEZING! I have "heat" in my room. I put that in quotes, because the thermostat says 68, but I'm telling you it's blowing cold air. My son made the mistake of coming to me to ask if he felt as if he had a fever. I put my hand on his head and it made him yell, "Good Lord, Mommy!!!" Yeah, sorry about that, son. You feel like you're running a fever of about 212. Better get some Motrin on board STAT!
So those are my current invisible symptoms. All I want, besides my pillow...because it's the only thing that truly understands me in times like this...is a 'lil help.
I run the risk, on days like today, of becoming highly offended and angered when I have to do something simple like walk to the opposite end of the building to retrieve someone or something I need to work with. I silently complain about it. "Yeah, let me walk alllllllllllll the way down there to...(insert task)...
I run the risk, on days like today, of making MS bigger than me and bigger than my God. Confession time! During my morning coffee, all I could think of was that I had 10hrs worth of work to put in, 2 commutes between buildings, then making sure I got my kids to their events tonight. I didn't once remind myself that today's the day the Lord has made. He got me up out of bed, so He must have work for me to do. If He was done with me, I wouldn't be here right now. I tell Him, "but I hurt and I tingle and I'm cold and I'm tired and..." And He says...well, He says nothing. At least nothing I'm being still enough to hear.
I run the risk, on days like today, of not remembering exactly how blessed I am. There are hundreds of thousands of folks who would trade places with me in a heartbeat. So what if yesterday and today are crappy days, right? Collective, "right!"...c'mon, I'm convincing myself here, as well as you! Tomorrow will be better, because it almost always is. I need to remember that I have a job to walk around at, legs that are still carrying me - no matter how they may feel, and my old faithful pillow, which will be patiently awaiting my return this evening! But most of all, a God who loves me enough to put up with my complaining and who will see me through to a better tomorrow.
In the meantime, I'm still wanting just a 'lil help! I'll never learn! HA!
Tuesday, December 1, 2009
1 Thessalonians 5:16-18
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."
This is my favorite Bible verse. It hit me like a 2x4 the night I discovered it in my reading. The "give thanks in ALL circumstances" was the part that got me. At the time, I recall going through one heck of a flare. I had lost a great deal of function on my entire left side. We had recently returned from an incredible place called the Family Hope Center, where we sought help for our son, then struggling with autism. My stress level hit "ludicrous", which woke Alice, who then went on a terror spree! Maybe if I'd have coined a name for my immune system back then, I'd have had a better sense of humor about it? But all the tripping, the falling, the fighting to put the turn signal on as I drove, primarily right handed...the beating I put upside my own head as I tried to shampoo my hair - well, it just wasn't all that funny. In fact, it was downright scary.
My neurologist, who normally calms me when I begin to get a little verklempt, was noticeably concerned and quickly put me on a course of 'roids. She also made the prognosis that I would most likely not regain full function on that side. Well isn't that special? Early 30's and that's that? I came home and cried...a lot. Then I prayed. And then I called the Family Hope Center to ask what I could do for myself, since they were brain experts. They told me to do as much cross patterned exercise as I could muster, be it crawling, creeping, cross country skiing, or elliptical machines. They reminded me of what I'd just learned about my son...that the brain is fully capable of forming new pathways around areas of damage.
So I did! Got on my belly and tried to pull my hefty self across the floor. I was about 80lbs heavier than I am today. Oh I'm still a sturdy girl, don't get me wrong...but to pull an additional 80lbs of myself across the floor with hardly any strength on one side was next to impossible! By God's grace, it began to work....slowly and surely. After a few weeks, and only a few weeks, I regained full function. I went in for a check up, which is the equivalent of a monkey's performance. She proclaimed, "this is incredible! This just doesn't happen!" Just another time where God spoke louder than man.
But the most incredible moment in my life where God spoke louder than man...the recovery my son has had from autism. That's the one that I can't speak of without tearing up every single time.
Ask according to God's will
1 John 5:14-15 Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.
This is my favorite Bible verse. It hit me like a 2x4 the night I discovered it in my reading. The "give thanks in ALL circumstances" was the part that got me. At the time, I recall going through one heck of a flare. I had lost a great deal of function on my entire left side. We had recently returned from an incredible place called the Family Hope Center, where we sought help for our son, then struggling with autism. My stress level hit "ludicrous", which woke Alice, who then went on a terror spree! Maybe if I'd have coined a name for my immune system back then, I'd have had a better sense of humor about it? But all the tripping, the falling, the fighting to put the turn signal on as I drove, primarily right handed...the beating I put upside my own head as I tried to shampoo my hair - well, it just wasn't all that funny. In fact, it was downright scary.
My neurologist, who normally calms me when I begin to get a little verklempt, was noticeably concerned and quickly put me on a course of 'roids. She also made the prognosis that I would most likely not regain full function on that side. Well isn't that special? Early 30's and that's that? I came home and cried...a lot. Then I prayed. And then I called the Family Hope Center to ask what I could do for myself, since they were brain experts. They told me to do as much cross patterned exercise as I could muster, be it crawling, creeping, cross country skiing, or elliptical machines. They reminded me of what I'd just learned about my son...that the brain is fully capable of forming new pathways around areas of damage.
So I did! Got on my belly and tried to pull my hefty self across the floor. I was about 80lbs heavier than I am today. Oh I'm still a sturdy girl, don't get me wrong...but to pull an additional 80lbs of myself across the floor with hardly any strength on one side was next to impossible! By God's grace, it began to work....slowly and surely. After a few weeks, and only a few weeks, I regained full function. I went in for a check up, which is the equivalent of a monkey's performance. She proclaimed, "this is incredible! This just doesn't happen!" Just another time where God spoke louder than man.
But the most incredible moment in my life where God spoke louder than man...the recovery my son has had from autism. That's the one that I can't speak of without tearing up every single time.
Ask according to God's will
1 John 5:14-15 Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him.
Saturday, November 28, 2009
Working For The Lord
I started a part-time job this week for a friend who owns a fast food type of restaurant. I see the job as a true blessing for many reasons. First and foremost, I got to reconnect with her after about 20 years. I received the prayers, visits, and even gifts of many, many friends! And it provides our family with additional income needed to try to make a go of life. But it's been about 17 years since I've worked in a job where I'm on my feet the whole time. God love my boss/friend, she asked me more than a few times if I needed more breaks, am I alright, and is there anything she can be doing for me. This is where those "invisible symptoms" are pesky again. To look at me, I'm fine! Yep, that's a huge blessing...but not the reality. I worked 5 hours the first night and my legs were quite disappointed in me. They answered with cramping, pain, and stiffness, as well as a pinch of foot pricklies. The following night, MS saw the leg cramping, pain, and stiffness, as well as foot pricklies...and raised me an eye fly and cognitive fart. "What kind of sandwich did you say, Sir? My apologies. Again, Sir, what kind of sandwich was that again? I'm so sorry..."
They have a special name tag at my friend's restaurant that says, "Be Nice, I'm In Training:-)". I wished they had one that said, "AND...I have MS and am learning the hard way that I'm not 18 anymore".
I capitalized MS in this blog, because right now, it is bigger than I. But not for long! I will continue on working as hard as I can. I'm working as if unto the Lord!
They have a special name tag at my friend's restaurant that says, "Be Nice, I'm In Training:-)". I wished they had one that said, "AND...I have MS and am learning the hard way that I'm not 18 anymore".
I capitalized MS in this blog, because right now, it is bigger than I. But not for long! I will continue on working as hard as I can. I'm working as if unto the Lord!
Thursday, November 26, 2009
Things To Be Thankful For...
It's Thanksgiving morning and I've been reflecting on all I have to be thankful for. What better way to share it than via blog? Here goes:
1. My Husband - aka The Easiest Guy In The World To Please
I've just received the nod for Wife Of The Year 2009. Why, you ask? Well, I threw a couple of Grands cinnamon rolls on a baking tray, heated them up, iced them, and served them to my husband. I'm thankful that he's easy to please, because I feel as if I often have little to offer. Cooking? Well, I'm great if you don't mind leftovers. Early on in the course of this disease, I learned that my "energy bank" (thanks for coining the term, NMSS) was most full on Sunday afternoons. So what I do is make up a bunch of food and store it for the week. My son adheres to a gluten/dairy free diet, which translates to cooking everything. Not like I can throw a Chef Boyardee in his lunchbox or swing through McD's. He's grown up on leftovers. He's also used to a house that's um...lived in? I keep up with the laundry, the grocery shopping, and well...that might be about it. I might swish a toilet brush around the bowl here and there, but my house looks quite different now than 1978ish, like Mom with the perfect rows of lines the sweeper made in the carpet. Everything smelled like Pledge and Comet. 2009? No. Future wife to my son? You can thank me later for setting the bar...low.
2. My Parents
They're just awesome and that's all I can say to sum them up. It's funny how life comes full circle. Things I do with my kids today are things I did with Mom when I was their age. Things my kids do with Dad are things my Grandpop did with me. I'm also blessed to still have my grandmother. When I was a little girl, I remember Mom and I going to her house for a cup of tea each week.
3. My Mommom
If you're picturing a frail, pinky out, tea drinking grandmother...don't. My Mommom? Yeah, she drove a '72 Corvette with t-tops that displayed a license plate frame, proclaiming "Wrap Your Ass In Fiberglass". She wore stiletto heels, and won some sort of award for Best Bartender. She tended at very upscale dining establishments and knew all the important folks in town. There was one mansion in our town...now a golf course. Mommom tended all their private parties. Today, she's not much different. The Vette is now a convertible Chrysler, the stiletto heels? She still tries to wear them, but it's difficult.
Back when I was in college, she owned a bar. Oh yes, can you see how that would've been the best thing ever? College kid...coolest grandmother ever owns...a bar? Thank you, Lord, for making me a new creation! Anyway, the biggest part of her business was food. No one, and I mean NO ONE, cooks like my Mommom. She wanted a deep fryer so that we didn't have to broil our foods in the tiny oven. She and I argued tremendously over that deep fryer. One night, Dad called to say that Mommom was en route to the hospital. When I arrived, I was told that only 2 of us at a time were allowed in. But then, they called the entire family in, as they didn't feel she would survive the terrible accident she incurred from the deep fryer. As the rest of the family left the hospital room, I stayed. I didn't think she'd really know I was there. I laid my head down on her and cried, telling her I wished it had happened to me. She opened her eyes wide and said, "now THAT would've killed me, but not this". She also had a choice comment for the doctor she overheard as saying, "at her age, I don't really think...". It was something like, " 'F' him!". I knew then and there she'd make it! She spent 31 days in the burn unit and endured several surgeries to reconstruct her foot, as well as grafting to her legs. She used to say, as she'd raise her foot, "I can tell people to kiss my...!" The skin used on her foot during the surgeries was grafted from her backside. Her recovery was quite brutal and lengthy. It's not without lingering discomfort during seasonal changes, and she must be careful about sun exposure. Tough to do, considering she is a former model who built a sun deck on the roof of her home, with her own hands back in the 70s, where she would brown to perfection. But by the grace of God, I still have my Mommom. She still cooks the entire Thanksgiving dinner from beginning to end, and that food is incredible!
4. My Kids
Plainly stated, they are my entire being. Though I'm completely biased, I feel that they are the best kids ever. They're brilliant, considerate, friendly, compassionate, and beautiful inside and out. They already know what it means to live for Christ and often surprise me with the ways in which they handle everyday situations that come their way. Nothing means more to me than they do.
5. My Friends/Family
I seriously have the best friends and family. They know I've had a change in employment and what that change meant to our finances. I didn't even have to tell them, because that's not the way I roll anyhow. It's nothing for me to receive pots of homemade soup, a surprise card in my mailbox with a couple bucks in it, bags of clothing for my kids, or...most recently, the blessing of a television to replace our faulty one. My friends are such that, when they upgrade their personal items, they would rather bless us with the previous good than profit from it. It's been a very hard transition for me to go from the one in a position of abundance years ago, blessing my friends where I could - to break even point - to "uh oh". God has a way of humbling me that's about as comfortable as if I'd try to stuff myself back into a pair of Z Cavaricci pants from the 80s. But my friends? They've taught me that there's no room for pride, just like the Bible teachers. That we're all here in this crazy place for a reason and that reason is to bless one another. I give thanks for my friends/family on a daily basis and pray that God reward them richly. 60" flat screens with Bose surround sound systems for all of them in their heavenly mansions, that's what I pray for! It's rare to know such a large group of completely selfless people. I'm just that blessed.
6. My Pets
We have 4 dogs and 4 cats. They usually just kind of do their thing and are an unnoticed part of the amoeba that is our family. But...they have this uncanny gift of knowing when I'm not feeling my best. If it's been a day where I push to make it through work, drive home barely awake, shuffle into the house, drop the purse and briefcase to the floor, climb the stairs one by one, throw my work clothes to the floor, drag one of my husband's t-shirts over my head, and fall into bed...I soon have 16 eyes focused on me. Nothing says, "I'm here for ya" like a warm Basset Hound situating himself tight to your side as you allow yourself to melt into your fluffy, pillow top mattress. Everyone else just kind of finds a spot on or near the bed. It's a collective, "we got this", and I love it.
7. My Bosses
Lots of people with ms wonder whether or not they should disclose their condition to management. I didn't have to debate that with this job, because everyone I work with knew me for years prior to hire. I now work at the private Christian school my kids have attended since 2003. My condition became obvious way back when my kids were consistently late for school, or didn't make it at all. I went through some times where my eyes didn't show up. Since I wouldn't drive my kids to school with poor vision, we just stayed here. I reluctantly informed their teachers and administrators that I wasn't trying to rebel, I was really just exercising good judgement. So it's not a secret. What's best about them is, they keep it tucked away and don't bring it up. Once in awhile, if I'm looking a hot mess, they will ask if I'm feeling alright. They pray for me. They treat me like anyone else, not like someone with a condition. It's comforting to not have to wonder if there's some sort of underlying scheme to replace me, or that they're waiting for me to slip up, or that I'll be forced out as I was in my corporate job when they learned of my diagnosis.
8. The Little Things
Aren't they the best? I don't even like referring to them as "little things", because they mean so much. Stuff like coffee nights with friends while our daughters learn how to kick unruly boys' teeth in...I mean...take karate lessons, and my son plays chess with a Hungarian Chess Master. Or watching 4+ hours of dek hockey with a rowdy group of girlfriends as our sons play their hearts out. Or the hugs I get from the kindergartners at work in the lunchroom, where I come away with tiny ketchup handprints on my nice dress shirt. Or how about an excellent cup of coffee, extra sugar/extra cream? Or the look of my car after my kids wash it for me, where it's got 3 to 5 wavy clean spots and the rest is still dirty. And the seat warmers it's equipped with, as well as power liftgate that's so handy for grocery loading...especially because I'm short and my vertical jump isn't what it used to be, so closing it becomes an athletic event. The times my son refers to me as, "best mommy ever". The way my daughter waves good bye to me from the bus until we're out of one another's line of sight. The fact that I can see her...clearly...out of both eyes...as I stand upright...without swaying...while hearing...out of both ears...my son tell me I'm the best mommy ever. Thank you, Lord.
9. My Health
Oh yes, I said it. I'm thankful for this screwy condition. While I've always been an appreciative sort of person, it has helped me to appreciate everything a whole lot more than I would have if ms weren't part of my life.
10. God
Best for last. I am most thankful for God and the way He has worked in my life. There's this really cool preacher on tv, Bishop TD Jakes, who says, "there is glory in your story". Well, I hope that's something people can say about me someday. And not because I want the glory, but because I somehow glorified God. Thankfully, God met me where I was at. Years ago, I didn't know that was the way He rolled. I felt like I had to win acceptance. That’s religion. Now I know that we don't earn anything from God, it's given to us through grace. Yeah, we have to try to live right, but ultimately, it's all a gift. And I, for one, am thankful for that! Kinda takes the pressure off, ya know?
I wish you all a most blessed Thanksgiving!
1. My Husband - aka The Easiest Guy In The World To Please
I've just received the nod for Wife Of The Year 2009. Why, you ask? Well, I threw a couple of Grands cinnamon rolls on a baking tray, heated them up, iced them, and served them to my husband. I'm thankful that he's easy to please, because I feel as if I often have little to offer. Cooking? Well, I'm great if you don't mind leftovers. Early on in the course of this disease, I learned that my "energy bank" (thanks for coining the term, NMSS) was most full on Sunday afternoons. So what I do is make up a bunch of food and store it for the week. My son adheres to a gluten/dairy free diet, which translates to cooking everything. Not like I can throw a Chef Boyardee in his lunchbox or swing through McD's. He's grown up on leftovers. He's also used to a house that's um...lived in? I keep up with the laundry, the grocery shopping, and well...that might be about it. I might swish a toilet brush around the bowl here and there, but my house looks quite different now than 1978ish, like Mom with the perfect rows of lines the sweeper made in the carpet. Everything smelled like Pledge and Comet. 2009? No. Future wife to my son? You can thank me later for setting the bar...low.
2. My Parents
They're just awesome and that's all I can say to sum them up. It's funny how life comes full circle. Things I do with my kids today are things I did with Mom when I was their age. Things my kids do with Dad are things my Grandpop did with me. I'm also blessed to still have my grandmother. When I was a little girl, I remember Mom and I going to her house for a cup of tea each week.
3. My Mommom
If you're picturing a frail, pinky out, tea drinking grandmother...don't. My Mommom? Yeah, she drove a '72 Corvette with t-tops that displayed a license plate frame, proclaiming "Wrap Your Ass In Fiberglass". She wore stiletto heels, and won some sort of award for Best Bartender. She tended at very upscale dining establishments and knew all the important folks in town. There was one mansion in our town...now a golf course. Mommom tended all their private parties. Today, she's not much different. The Vette is now a convertible Chrysler, the stiletto heels? She still tries to wear them, but it's difficult.
Back when I was in college, she owned a bar. Oh yes, can you see how that would've been the best thing ever? College kid...coolest grandmother ever owns...a bar? Thank you, Lord, for making me a new creation! Anyway, the biggest part of her business was food. No one, and I mean NO ONE, cooks like my Mommom. She wanted a deep fryer so that we didn't have to broil our foods in the tiny oven. She and I argued tremendously over that deep fryer. One night, Dad called to say that Mommom was en route to the hospital. When I arrived, I was told that only 2 of us at a time were allowed in. But then, they called the entire family in, as they didn't feel she would survive the terrible accident she incurred from the deep fryer. As the rest of the family left the hospital room, I stayed. I didn't think she'd really know I was there. I laid my head down on her and cried, telling her I wished it had happened to me. She opened her eyes wide and said, "now THAT would've killed me, but not this". She also had a choice comment for the doctor she overheard as saying, "at her age, I don't really think...". It was something like, " 'F' him!". I knew then and there she'd make it! She spent 31 days in the burn unit and endured several surgeries to reconstruct her foot, as well as grafting to her legs. She used to say, as she'd raise her foot, "I can tell people to kiss my...!" The skin used on her foot during the surgeries was grafted from her backside. Her recovery was quite brutal and lengthy. It's not without lingering discomfort during seasonal changes, and she must be careful about sun exposure. Tough to do, considering she is a former model who built a sun deck on the roof of her home, with her own hands back in the 70s, where she would brown to perfection. But by the grace of God, I still have my Mommom. She still cooks the entire Thanksgiving dinner from beginning to end, and that food is incredible!
4. My Kids
Plainly stated, they are my entire being. Though I'm completely biased, I feel that they are the best kids ever. They're brilliant, considerate, friendly, compassionate, and beautiful inside and out. They already know what it means to live for Christ and often surprise me with the ways in which they handle everyday situations that come their way. Nothing means more to me than they do.
5. My Friends/Family
I seriously have the best friends and family. They know I've had a change in employment and what that change meant to our finances. I didn't even have to tell them, because that's not the way I roll anyhow. It's nothing for me to receive pots of homemade soup, a surprise card in my mailbox with a couple bucks in it, bags of clothing for my kids, or...most recently, the blessing of a television to replace our faulty one. My friends are such that, when they upgrade their personal items, they would rather bless us with the previous good than profit from it. It's been a very hard transition for me to go from the one in a position of abundance years ago, blessing my friends where I could - to break even point - to "uh oh". God has a way of humbling me that's about as comfortable as if I'd try to stuff myself back into a pair of Z Cavaricci pants from the 80s. But my friends? They've taught me that there's no room for pride, just like the Bible teachers. That we're all here in this crazy place for a reason and that reason is to bless one another. I give thanks for my friends/family on a daily basis and pray that God reward them richly. 60" flat screens with Bose surround sound systems for all of them in their heavenly mansions, that's what I pray for! It's rare to know such a large group of completely selfless people. I'm just that blessed.
6. My Pets
We have 4 dogs and 4 cats. They usually just kind of do their thing and are an unnoticed part of the amoeba that is our family. But...they have this uncanny gift of knowing when I'm not feeling my best. If it's been a day where I push to make it through work, drive home barely awake, shuffle into the house, drop the purse and briefcase to the floor, climb the stairs one by one, throw my work clothes to the floor, drag one of my husband's t-shirts over my head, and fall into bed...I soon have 16 eyes focused on me. Nothing says, "I'm here for ya" like a warm Basset Hound situating himself tight to your side as you allow yourself to melt into your fluffy, pillow top mattress. Everyone else just kind of finds a spot on or near the bed. It's a collective, "we got this", and I love it.
7. My Bosses
Lots of people with ms wonder whether or not they should disclose their condition to management. I didn't have to debate that with this job, because everyone I work with knew me for years prior to hire. I now work at the private Christian school my kids have attended since 2003. My condition became obvious way back when my kids were consistently late for school, or didn't make it at all. I went through some times where my eyes didn't show up. Since I wouldn't drive my kids to school with poor vision, we just stayed here. I reluctantly informed their teachers and administrators that I wasn't trying to rebel, I was really just exercising good judgement. So it's not a secret. What's best about them is, they keep it tucked away and don't bring it up. Once in awhile, if I'm looking a hot mess, they will ask if I'm feeling alright. They pray for me. They treat me like anyone else, not like someone with a condition. It's comforting to not have to wonder if there's some sort of underlying scheme to replace me, or that they're waiting for me to slip up, or that I'll be forced out as I was in my corporate job when they learned of my diagnosis.
8. The Little Things
Aren't they the best? I don't even like referring to them as "little things", because they mean so much. Stuff like coffee nights with friends while our daughters learn how to kick unruly boys' teeth in...I mean...take karate lessons, and my son plays chess with a Hungarian Chess Master. Or watching 4+ hours of dek hockey with a rowdy group of girlfriends as our sons play their hearts out. Or the hugs I get from the kindergartners at work in the lunchroom, where I come away with tiny ketchup handprints on my nice dress shirt. Or how about an excellent cup of coffee, extra sugar/extra cream? Or the look of my car after my kids wash it for me, where it's got 3 to 5 wavy clean spots and the rest is still dirty. And the seat warmers it's equipped with, as well as power liftgate that's so handy for grocery loading...especially because I'm short and my vertical jump isn't what it used to be, so closing it becomes an athletic event. The times my son refers to me as, "best mommy ever". The way my daughter waves good bye to me from the bus until we're out of one another's line of sight. The fact that I can see her...clearly...out of both eyes...as I stand upright...without swaying...while hearing...out of both ears...my son tell me I'm the best mommy ever. Thank you, Lord.
9. My Health
Oh yes, I said it. I'm thankful for this screwy condition. While I've always been an appreciative sort of person, it has helped me to appreciate everything a whole lot more than I would have if ms weren't part of my life.
10. God
Best for last. I am most thankful for God and the way He has worked in my life. There's this really cool preacher on tv, Bishop TD Jakes, who says, "there is glory in your story". Well, I hope that's something people can say about me someday. And not because I want the glory, but because I somehow glorified God. Thankfully, God met me where I was at. Years ago, I didn't know that was the way He rolled. I felt like I had to win acceptance. That’s religion. Now I know that we don't earn anything from God, it's given to us through grace. Yeah, we have to try to live right, but ultimately, it's all a gift. And I, for one, am thankful for that! Kinda takes the pressure off, ya know?
I wish you all a most blessed Thanksgiving!
Tuesday, November 24, 2009
Comfort Is A TV Speaker Away...
Today was probably the most bizarre day I've had. That should tell you something, since I attended a state college. No wait...college still had today beat. Oh nevermind, I'll just get to it!
I spent the entire afternoon in a hospital emergency room with a woman I never met. Well, this woman and my very dear friend. What began as one friend (me!)offering to accompany the other (her!) while she delivered church Thanksgiving baskets to families...suddenly became a medical emergency.
Because this gal's family couldn't get to the hospital for several hours, it meant that my friend and I were to take over all the typical hospital accomplice duties like accompany her to registration, intake, triage, etc. We didn't mind, of course. All that mattered was, and is, her well being. We both felt blessed to be called by God in that exact moment to serve in that capacity, and we'd do it again in a heartbeat.
There were times she was able to articulate rather clearly. She shared that she suffers from a chronic disease, that times are very hard, that she never thought she'd be in this place in life at her age, that nothing ended up like she thought it would, that she was so, so depressed. I stood there looking in her eyes, catching glimpses of when she was fully and totally with me, as well as when she was in that other, more incoherent, slurry speech riddled place. And while her story is SO not about me, I find myself reflecting on everything she said.
I get the whole "chronic disease, how did I get here, this is not the way I imagined life" theme. And the more I listened and digested, the more afraid I got. Enter "What If" game! I ran it all through my head...what if this is me in 20 years? What if my health gets to be such that I can no longer work, my husband's no longer a part of my life, and I find myself being helped out of my home by a stranger I met seconds earlier? What if my stress reaches stroke level? What if my kids are hours from being able to be there for me? What if I'm a burden to them and they actually want to be hours away? The "What If" game never made it to television because, quite frankly, it sucks. In fact, it reaches an unsurpassed level of suckdom. Yet I continue to play on certain occasions.
My little game was momentarily interrupted when the nurse introduced us to the television remote on behalf of our patient, who had fallen asleep. Even in her restful state, she appeared so worn down by life. I decided to put on a channel that played Christian music, turn it down to a relaxing level, and place the speaker next to her. When the staff came to take her down for a CT scan, she awoke and commented on the beautiful "inspirational" music...said she recognized the songs and really liked them. My friend and I spent a couple of hours in the empty hospital room, awaiting her return. As she was wheeled back in to await the results, the first thing she said was that she was glad we were there. The second thing, "where is that music? I really want my music".
As she asked that, I didn't see tears, nor apparent worries. It was plain to see that she was receiving God's comfort, and it came in the form of Christian music. That's when it hit me.
Yep, I know about chronic disease. I don't know how I got here and sure didn't expect this from my life. Times get hard. But I do believe the age old "God only gives us what we can handle" line. Then I really got to thinking...I just might be stubborn enough, strong enough, and dog gone it, crazy enough to get through this according to His plan. Kind of like Stuart Smalley meets the Bible! I believe that if continue to draw close to God, He will comfort me. I saw it in action today, through the eyes of a woman enduring her afflictions. Just another example of how God is good...all the time.
I spent the entire afternoon in a hospital emergency room with a woman I never met. Well, this woman and my very dear friend. What began as one friend (me!)offering to accompany the other (her!) while she delivered church Thanksgiving baskets to families...suddenly became a medical emergency.
Because this gal's family couldn't get to the hospital for several hours, it meant that my friend and I were to take over all the typical hospital accomplice duties like accompany her to registration, intake, triage, etc. We didn't mind, of course. All that mattered was, and is, her well being. We both felt blessed to be called by God in that exact moment to serve in that capacity, and we'd do it again in a heartbeat.
There were times she was able to articulate rather clearly. She shared that she suffers from a chronic disease, that times are very hard, that she never thought she'd be in this place in life at her age, that nothing ended up like she thought it would, that she was so, so depressed. I stood there looking in her eyes, catching glimpses of when she was fully and totally with me, as well as when she was in that other, more incoherent, slurry speech riddled place. And while her story is SO not about me, I find myself reflecting on everything she said.
I get the whole "chronic disease, how did I get here, this is not the way I imagined life" theme. And the more I listened and digested, the more afraid I got. Enter "What If" game! I ran it all through my head...what if this is me in 20 years? What if my health gets to be such that I can no longer work, my husband's no longer a part of my life, and I find myself being helped out of my home by a stranger I met seconds earlier? What if my stress reaches stroke level? What if my kids are hours from being able to be there for me? What if I'm a burden to them and they actually want to be hours away? The "What If" game never made it to television because, quite frankly, it sucks. In fact, it reaches an unsurpassed level of suckdom. Yet I continue to play on certain occasions.
My little game was momentarily interrupted when the nurse introduced us to the television remote on behalf of our patient, who had fallen asleep. Even in her restful state, she appeared so worn down by life. I decided to put on a channel that played Christian music, turn it down to a relaxing level, and place the speaker next to her. When the staff came to take her down for a CT scan, she awoke and commented on the beautiful "inspirational" music...said she recognized the songs and really liked them. My friend and I spent a couple of hours in the empty hospital room, awaiting her return. As she was wheeled back in to await the results, the first thing she said was that she was glad we were there. The second thing, "where is that music? I really want my music".
As she asked that, I didn't see tears, nor apparent worries. It was plain to see that she was receiving God's comfort, and it came in the form of Christian music. That's when it hit me.
Yep, I know about chronic disease. I don't know how I got here and sure didn't expect this from my life. Times get hard. But I do believe the age old "God only gives us what we can handle" line. Then I really got to thinking...I just might be stubborn enough, strong enough, and dog gone it, crazy enough to get through this according to His plan. Kind of like Stuart Smalley meets the Bible! I believe that if continue to draw close to God, He will comfort me. I saw it in action today, through the eyes of a woman enduring her afflictions. Just another example of how God is good...all the time.
Friday, November 20, 2009
Christmas Will Be Different This Year, Mommy
Yesterday, my son and I were on our way home after school and he says, totally out of the blue, "Christmas will be different this year, Mommy".
Ironic, since I happened to be thinking about the exact same thing. While I know full well that Christmas has nothing to do with gifts, and my kids are such that they wouldn't care whether or not they had 50 gifts to open or none, I had self imposed pressure and expectations to fill the space under the tree with stuff. But, this year ain't like last.
Enter sadness. Lately, I'd felt as if I somehow failed my family by losing my clients several months ago. I spent sleepless nights wondering if I could've worked any harder, done any better, been any more profitable. I was already doing the job of multiple people by my lonesome. That came at a cost, however. When you're on pure commission, you can't afford to put yourself on cruise control, not even for a day. The job meant tons of hours+daily effort+holidays included. To raise the stakes, I was the breadwinner at that time. My husband was caught up in the economical climate change before I was. When 20-somethings stopped building million dollar homes, his company folded. Nice while it lasted, but because they wanted their homes built yesterday, and/or in 18 degree weather, it meant forgetting what the man looked like on most days. He was often gone before the kids and I woke, home after we tucked ourselves in for the night. We knew he was around, however, because food was missing and contributions to the bank account showed up each Friday.
So I pounded the pavement, trying to find other clients to serve. If I was the person that others in the business called for advice, surely I'd have no trouble finding another job. I had great relationships with all of the important people at the companies I needed to interface with on behalf of my clients. Surely there would be someone in need of my expertise, right? Nope! The final nail in the coffin of sole proprietorship came when my pc died. So after months of fruitless pursuits and no means with which to actually perform the job that I thought I was so good at...
I teetered on that fine line between having it all together and losing my hole-filled mind. That's never good for Alice (the pet name I've assigned to my immune system, which could benefit from anger mgmt classes). She's a very light sleeper.
"Christmas will be different this year, Mommy", said the 10yr old, while gazing casually out the car window. In a split second, the past 2 years flashed through my mind and I had two choices: Ask him what he meant, or pretend I was sleeping. I decided to go with, "what do you mean by that, buddy?", totally unprepared to counter whatever it was he'd answer with.
"You'll be home the whole day!" Wow. I was immediately reminded of a school project his class did last year. It was a Wish Book, but not for Sears. My son's wish was, "for my Mommy to have a day off".
Is that what he's been thinking of? Spending more time with me? While I've been feeling like I've let him, my little girl, and my husband down? Enter tears in 3...2...
How could I miss the fact that God has been hard at work in this? He paved the way for me to acquire a job at my kids' school doing something I love to do that truly blesses others. Fringe benefit #1 - I get to hug my kids during my work day. Mine, as well as bunches of others who rush to my classroom to say hello and receive their hugs. I'm a little like Norm, but the setting is a Christian school rather than an underground bar. It's the neatest feeling to walk in the door and hear your name be shouted...and you're NOT in trouble!
And my husband? He's a fantastic provider. He's been blessed to find an assortment of jobs that help provide for our needs. Even with the 3 jobs he holds, he's still home much more than he used to be. We do things as a family now. We laugh...a lot. We draw closer to one another and to God than we ever had. I have an incredible family that's always available if we need anything. Great church family and praying friends? We've got that! I recently was blessed with a part-time job that will provide another necessary oar in the financial boat. To top it all off...I still get to see and hang out with the one person I knew I'd miss most from my old job. Her friendship is worth its weight in gold.
So if I change my perspective and begin to tally it all up, I'd say I'm really quite wealthy. My son hit me with a heavy dose of reality. I haven't let my family down. I did my best day in and day out in my previous job and left it all on the table. There wasn't one thing I could've done better, one day I could've worked harder, or one additional dollar I could have generated. God simply reached down to reposition me for His work, which I am passionate about doing. In the meantime, I get to spend entire Thanksgivings, Christmases, birthdays, and Sundays with my family. Not too shabby! It may have taken me nearly a year, but I'm finally getting it.
I don't follow easily, which is probably why this has been a hard situation to wrestle with. Yet again, a song is written all about me. "What It Feels Like To Be Led". Many thanks to the band for thinking of me...
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