Saturday, November 28, 2009
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
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.
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
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
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...
Wednesday, November 18, 2009
I don't know what possessed me to open the mailbox today, because there's never anything uplifting in there. Just a large group of folks who want money we don't have. Nonetheless, I did and found an envelope inside that said, "MS Membership Drive". I cracked a smile. I knew I had blog material...
With a gift of $30, I'll get a membership card and a year's subscription to the Momentum magazine.
A membership card.
When, where, and to whom would I show that off? Do I whip that out before the cashier rings up my groceries? Do I brandish it to Mr. Policeman the next time I'm pulled over for speeding or window tint? Maybe it comes numbered 1-10 so I can present it for my follow up MRIs? Get 10 scans and my copay's waived on the 11th? Movie store? Public library? I could present it to get my late fees waived. "clearly you see why I've forgotten that I took that book/movie out 3 months ago"...
Wouldn't you think part of the perks of having ms is that you just GET the membership card? I mean, anyone can fork out $30 to join. But what about the person who makes a lifelong commitment and actually HAS the lesions? Personally, I think THOSE folks should not only get a membership card, but also a jacket. A Members Only jacket, to be specific.
Thursday, November 12, 2009
Yesterday, I was having a casual conversation with my boss about a friend who also has ms. She, like me, has "invisible symptoms". Said friend and I have occasionally had in depth conversations over dessert where she has expressed that her husband just doesn't "get it" and how that can sometimes pose a bit of a problem for the two of them.
I shared with my boss how sometimes I feel like my friend. My husband is a fantastic guy, but he'd just as soon swing from a jungle rope a la Tarzan to get past a laundry basket of freshly folded clothing than carry it upstairs. He'd rather win at Dish Jenga than load the dishwasher. He'd rather take the strands of hair that collect in the tub's drain and fling them up against the shower tile than reach out of the shower to the trash can to properly dispose of them. Sometimes I think he's trying to create a piece of art. Oh come on, don't pretend that I'm the only one who loses half a head of hair each time I wash it. Praise the Lord that I can grow twice that in my sleep...
It's my own fault. In the early days, I gushed over him. I served his homemade dinners to him, retrieved his iced tea, dished out his ice cream, and didn't ask him to raise a finger. Then came a drastic change in energy levels, and a whole lotta focus on self. I went from thinking, "how can I serve him" to wishing he'd have gotten a subscription to Psychic Friends Network so he could know that today was a bad day and I needed his help. And that, when I explained to him that I was feeling weak, not seeing straight, or some other scary thing, he'd go catatonic and I'd angry carry, angry load, or angry de-hair, feeling hurt and offended.
So, as I was sharing some of this with my boss, the following phrase came out. "It's not that these husbands aren't great guys, I mean, when they married us...we were so strong and could do everything. And now, I think my husband wonders if he'll get a call some morning that mommy can't get up out of bed and walk..." Uh oh. Fear struck, enter tears in 3, 2... WHOA! Where'd THAT ultra sad thought come from? Who me? Couldn't be!" But it was. And every scary thought hit me all at once. Well that was just stupid of me. But thankfully, the boss is cool, she is one of my best friends, and she has tissues.
Today, I went on a field trip with my son. For some reason, my health dramatically declined throughout the trip. Lost feeling in my feet, was vibrating from the waist down, I was swaying, and could barely stay awake. If it weren't for my 32 trips to the bathroom, I'd have been asleep on my numb feet.
Last stop was the gift shop. I stood there listening to the beautiful music of "Oh Holy Night". I had to consciously tell myself my legs were NOT weak, I was NOT swaying, and I was wide awake. I was singing in my head when my son decided to take my hand and have a dance with me. Suddenly, the swaying became an asset...as long as I did it along with the music. And I began to get verklempt all over again, but for joy this time and not fear. 'Cause like my favorite parts of that song say:
Long lay the world In sin and error pining,
'Til He appear'd And the soul felt its worth.
A thrill of hope The weary world rejoices,
For yonder breaks A new and glorious morn.
Fall on your knees! O, hear the angels' voices!
And in His name All oppression shall cease.
Sweet hymns of joy In grateful chorus raise we,
Let all within us Praise His holy name.
I don't need to cry over what might never happen. I just need to remember that, no matter what happens, it's all just temporary. Forever is a whole lot better.
Saturday, November 7, 2009
Here's another article from my Momentum magazine. It should be required reading as part of the ms fan club, in my opinion.
"Cognitive changes in ms are very different from those that appear in Alzheimer's. MS generally affects a few specific functions. Those functions include memory; complex attention; speed of information processing; planning and prioritizing; visual perceptual abilities; and word finding."
As I read, I was all, "check, check, check, check, check, and check!" What's great about it, however, is that these things are intermittent for me. The other great thing is that they never directly impact my children or the quality of my work. And, most times, those around me do not notice. Well I digress...I think my boss noticed that I was 10 minutes late for work today, but what she didn't realize was why. And, because she is pretty incredible, she never mentioned it. I think she knows that no one feels worse about falling short than I do. Speaking of falling short, I've shrunken again. Feeling like Lily Tomlin as Edith Ann in my oversized computer chair.
Occasionally, when I'm feeling generally overwhelmed, I can't get myself together to begin my day. I don't mean the usual outfit critique of, "I look fat in this, let's try again". I mean, "this sock is dark blue, isn't it? Wait, now these socks don't match. That first one WAS black. Ugh, I can't get this necklace clasped because of the tremor in my finger. Are these the brown shoes or the black ones? Close enough. Uh oh, these are two different shoes. Omg, I forgot to put deodorant on. Take the shirt off and do that. Ok that's done...but now I don't like that shirt. Wait, did I put deodorant under my right arm? Nope, shirt off again.
And there you have it, about 8 extra minutes. The other 2 minutes came from choosing the wrong way out of my driveway. Why did I turn left? I never turn left. Well, I do if I'm taking the kids to karate. Do I stop and turn around? No, just circle back. Run in the door at 8:40am with all my might. Don't make eye contact with anyone, just get in the room and start working. Ugh, it's already 9am, time to run back out to the next item on my itinerary. Run, Tina, ruuuuun!
Wednesday, November 4, 2009
I happily paged through and hit p24. Says here "Sleep Debt Warning Signs". Ugh, what is this...Cosmo? And why must we refer to my insomnia as debt? Am I not in enough of that as it is? I spent the last 2 Friday nights on the phone, trying to get our creditors to take one step to the left off our chests. I remember when Friday nights meant going out on the town with friends, racing my car a little, maybe hitting a club. But now, my cool factor has far surpassed that. Oh yes...now I find joy in calling companies and asking for hardship plans. All this to say, you can see why anything with the word "debt" included is exhausting.
Here are the Sleep Debt Warning signs, according to CosmoMomentum:
- If you need an alarm clock to wake up (duh?)
- If you're tired right after you get up instead of feeling refreshed (because the alarm clock woke me?)
- If you either can't fall asleep, or you wake up after a couple of hours and can't get back to sleep
- If you kick off your bed covers (do we not all do this?)
- If you get up frequently at night for any number of reasons (you try giving birth twice in your life and having said babies use your bladder as a punching bag in utero!)
- If you snore (my husband snores enough for the both of us!)
I have all of those but the last one. But don't most of us? Or have I forgotten what "normal" is?
Debt is definitely a four letter word to me. Well, I'll tell sleep as I told a particular, unwavering creditor, "you'll have to get in line behind everybody else!" So there!