Wednesday, September 30, 2009

It Gets Worse Before It Gets Better...

As with any "flare", it gets worse before it gets least for me. Like, if I'm having the sunburn feeling across my back, it'll get skin graft worthy before it dissipates. And if my emotions are really askew, they'll become unrecognizable to me before they improve. Today is that day. I know this, because I'm well aware that it cannot get worse! I feel as if I may start crying at any moment and I'm positive it will not stop for a good while once it starts. So! I'm toughing it out, sucking it up...all those super cool athletic catch phrases! The bottom line is, I'm not gonna do it.

Like I was saying, emotions...all over the map...due to overabundance of stress over the past couple of weeks. Next usually comes physical pain, which has just started. Every muscle in my feet and calves is tight. The skin across my chest and the top of my back is starting to burn a little. It'll get worse before it gets better, but I take comfort in knowing I'm well into the cycle. I currently have no ability to plan ordinary tasks, such as getting ready for work this morning. Shoes before socks, brush teeth without putting paste on the brush, leave access card for building clipped to the 3rd outfit I tried on and threw back on the bed...check, check, and check!

Once I got to work, because that was a conscious effort in and of itself, God took over. My sessions with my students were flawless. Just as in my days of working in medical never interfered. I may have put the butter from my morning breakfast in the freezer, but I knew that we were supposed to get a check from Aetna on such and such day and exactly how much it would be for.

I'm thankful for that ability. At one of my many quarterly check ups with my neuro, she informed me that my "days of multi-tasking are over". Sorry, sister. You've got the wrong lady. I can work circles around lots of people...just don't ask me to pack lunch for the day, because there might be a shoe in your lunch kettle. Dating myself again...I don't think they make kettles anymore. Remember the KISS one? I do. I had that and Charlie's Angels. Oh no...retro'ing again!

Everyone's got a strategy. Heck, I say that word a hundred times a day to my students. "You need a strategy for this math problem", "you need a strategy for studying this material", etc. In reading my friend's post about her current emotional struggles, she is using the "withdraw" strategy. She plans to hide out until the storm passes. When I read that, I caused me to consider my strategy. I realized that I will purposely put myself in situations where I am among others. But sometimes that's not the best route to take.

I liken it to when you go to the eye doctor and they dilate your eyes so that you can try your hand at driving home half blind? You find yourself concentrating very hard to do what you could do as an autonomic response just 5 minutes prior. That light's red, right? That car's coming but I can't tell how fast, so I'll sit for an extra second. Better safe than sorry. Everything you do is second, third, and fourth guessed before you do it. If you screw up, CRASH! Well, this is similar. Interacting with people is automatic for me. But now, I have to second guess everything before I say it...then third and fourth guess how it may have been interpreted! Talk about exhausting!

So all these years, I've thought it best to take the approach of seeking out social opportunities as a coping mechanism for these occasional ms emotional oceans, as opposed to withdrawing. But after yesterday and today, I'm wondering if my friend isn't onto something! Yesterday, I was so off my game in a work meeting that I looked like a goof. I couldn't string a thought together and stuttered like Porky Pig. Today, I was reminded that the only perfection I have is in Christ. He never disappoints, never offends, and is always with me. I can't place the burden of making/keeping me happy on those around me, because who can possibly bear that load? If I can't organize my thoughts, I certainly can't expect someone else to. My Lord is the only one capable. Maybe my new strategy, so as to protect my reputation and safeguard such variable feelings, should be to withdraw...with my Bible! Being alone is scary when I'm feeling like this, but the only 100% safe person to be with is Christ. Well, some Constant Comment tea couldn't hurt as well, right?

Thank you, dear friend, for your posts. They are blessing me!

Tuesday, September 29, 2009

Be Still...

I try to remember to say those 2 little words to myself over and over. BE STILL.

I remember, back when I was a little girl, Mom would yell, "why can't you just be still?" I liked to run around the back of her '72 Buick Skylark, jump on the backseat, and stand dead center on top of the bump for the driveshaft, resting hands on each corner of the front bucket seats to steady myself. Head directly in her field of vision in the rearview mirror. "Why can't you just be still!" The 70's were so cool. Kids today don't get to experience the thrill of laying up in the ledge above the backseat, under the back window. Nor do today's kids understand that we had safety features far surpassing those of a brand new Chrysler. We had......."quick action Mom arm"! They've since tried to duplicate it with things like seat belts and airbags. My car supposedly has airbags in every nook and cranny + a 5 star crash rating. I'll tell you right now, if there was a crash test where it was '72 Skylark w/Mom arm vs my car w/entirely inflatable passenger compartment, I'm going all in on Mom arm! Thinking back, the only time I lost a tooth from being thrown against the dashboard, my Dad was driving. Dad arm is not at all like Mom arm. He was too busy trying to steer out of it, whereas Mom could multi-task. O, M, and G...I'm totally retro'ing! It's been a hard day, this seems to be when that happens!

In fact, it's been a very hard week and it's only Tuesday. Seems like when something completely overwhelmingly emotional happens, it's a red carpet for my old friend - Emotional Ocean. I doubt that's a wikipedia term, though I could coin it. Somebody flicked the switch! I'm happy, but I'm sad. I'm up, but I'm and I'm out. Hey, I'm an Alanis Morissette song! Be still...

The Bible says, "Be still and know that I am God". That's my assurance that I am not alone, ever.

Outwardly, I'm fine. I'm having to consciously decide to be fine, however. I know this is just another way ms presents itself in my life. It'll go as quickly as it came on, and I'll be fine. In the meantime, I'll continue to mirror the song lyrics from Natalie Grant's "Perfect People".

Never let 'em see you when you're breaking
Never let 'em see you when you fall
That's how we live and that's how we try
Tell the world you've got it all together
Never let them see what's underneath
Cover it up with a crooked smile
But IT only lasts for a little while

And in this case, the IT means this Emotional Ocean. I'm an old pro at covering it up and pressing on, however. But I'm hoping one of my friends will tell me if my smile is crooked, because that's a whole 'nuther ms symptom that I should know about!

Sunday, September 27, 2009

The Times That, "I Get So Lonely"

Yeah, it's a Janet Jackson song. I've gone to every concert she's done here in my city, so it's no wonder one of her songs might stick with me. There are times...boy are there times...I get so lonely!

My rational mind knows how ridiculous that sentiment is. I have probably THE most incredible support system. My family members are all-stars, my friends are straight from God, I have an amazing what's the problem?

I used to think depression was a state of mind. I have family members who suffered from it and I'd think, "I wonder why they just can't get happy?" And then it came at me about 5 years ago! I remember on one of my many drives to the holistic practitioner, the rain was so hard I could barely see. I had my wipers set on "holy crap" mode. Tractor trailers were zooming by on the opposite side of the road. Car time for me is very reflective. I got to playing the "what if" game. What if I wake up tomorrow and my usual morning "inventory" is off? Usual morning inventory goes like this:

Did I hear the alarm? Ears, check!
Do I see the time? Eyes, check!
Can I swing my legs to the side of the bed? Cool!
Can they get me across the floor? NICE!

When I play the "what if" game with myself, I've taken my eyes off of my Lord. We all remember the story where Jesus tells Peter to get out of the boat and come to him, Peter looks down and goes into the water? I've been in that water A LOT! That day, especially. I thought some very awful things about life and about myself.

I knew I was in trouble. But where could I be completely real in total confidentiality without risking reputation for what I needed to share? Dear friend/chiropractor! That poor woman. Writing these diary-like entries has reminded me of how often she intervened to get me out of sticky situations. Like I've said before, God gives us just what we need when we need it. He does that in many ways, and putting someone in our lives to stand in Christian love and support is one of 'em. Anyway, I had a very difficult conversation with her that resulted in me going to my neurologist and receiving some anti-depressants. The neuro felt it was chemical, ms gets into its little K-Tel chemistry set and plays around at times. It could resolve in time. I took the medicine for awhile and was able to wean off after about a year. What a very dark and hopeless time. Thanks for the chemistry experiment gone wrong, ms! Love ya for it!

Doesn't mean I don't get lonely, though. And you might know the aforementioned song's lyrics, "I get so lonely, can't let just anybody hold me". I often don't want to share my raw feelings with others, not even my husband. If I do, I'll look weak or something, right? And I'm strong, can't let 'em see me sweat! Well, most of the time. But God knows. I worked on putting the next couple of lyrics in my heart and making them all about God. They go, "You are the one that lives in me. Want no one but you". Janet...Miss Jackson, if you're nasty...would be proud to know I turned her song into a Christian one!

I realize that if I base my feelings of happiness/completeness on people, even if they're completely awesome (and I'm blessed to know plenty of them!), I've set myself up for disappointment. People will always disappoint, not because we try to, but because we're imperfect and can't help it. My focus has to be on Christ. He never disappoints, ever. So when I get to feeling lonely and I make the mistake of starting up the "what if" game, or feeling as if someone has let me down, I look to Him to calm the storm. Oh me of little faith, why do I doubt?

Since I enjoy songs so much, I'd like to share this one...

Saturday, September 26, 2009

What Do I Say To These Kids?

That was quite a pickle. I battled with "do I or don't I". Seemed like a million people said I was doing them a disservice if I didn't, while my parents told me it was ridiculous to share it with them. Growing up in my family, you just didn't talk about stuff. For example, my mom had 6 breast lumps removed over the course of as many years. I think I knew about 1 of them before the actual surgery. You don't tell your kids about things that will worry them...that's what I grew up on. But then I received that month's installment of the NMSS magazine that talked all about how you should tell your kids about ms and what to say! Ok, that's my cue!

I think my daughter was about 9 when I sat her down at the kitchen table to explain my condition. I chose her because she was oldest and, in my opinion, better able to understand without being afraid. My son was 8 and I didn't give him enough credit, plain and simple. So I sat down across from her and proceeded to give my best performance...explaining the condition in an age appropriate manner, just like the magazine said. Checking to see if she had any questions, which she did not. It was so difficult to discuss something like ms as I looked into those big, beautiful eyes. All I could think of was how I idolized my parents growing up. No one was stronger and more perfect than Mom and Dad to me. I didn't need no stinkin' stuffed animals or security blankets...I had them! So like, surely my daughter couldn't think of me as a security blanket personified if I had some weird illness! I was thankful to finish the conversation and get to bed. All the worry of what to say and how it would go was a one-night cure for my insomnia. The talk went off without a hitch, ended well, and I was still in the running for Mother of The Year, 'cause I did what I was supposed to do according to that article.

The next day, we went grocery shopping. At the end of our always endless conveyor belt of items, the cashier asked if I wanted to donate $1 to the ms walk. Oh perfect, I thought! We JUST talked about this and now she'll see that ms is something lots of people have and that there are even walks for it! I proudly donated the $1 and completed my paper shoe for the wall! As we walked to the car, I mentioned to my daughter that it was pretty cool how that store was raising money for ms...right? She looked up at me with those big, beautiful eyes and said, "what's ms?" Me all shocked, gently reminded her of what we talked about the previous night? Ya know, the thing that makes Mommy really sleepy? Her all, "yeah, you get sleepy because you're tired." HA!!! Yes, sweetie...that's exactly it. Clearly, I was premature in disclosing it to her. Mom and Dad, yet again, proved to be right. Always...right.

My son, on the other hand...the one I thought wouldn't get it? He always got it, I just never realized. From the time he was old enough to open a door, he'd open it for himself and for me. He's got a knack for sensing when I'm not feeling well each and every time. It's uncanny, almost as if he has a subscription to Miss Cleo or something. At the ripe old age of 10, he will hurry to my car door to open it. When I pull in after work, he runs out to carry my things in. I've never officially told him, but I don't need to. We've been through lots of scary stuff together, my son and I. He's been in ICU, a trauma unit (twice), and 2 nationally recognized children's hospitals on more occasions than I can count. Throughout those scary visits, he was always locked onto my eyes in a sort of, "I know you're there...and I'm alright" manner. I find myself looking at him that way once in awhile. Guess this is just how we roll.

God always gives us just what we need. And sometimes, that need is fulfilled by a little boy who takes his mom by the hand and walks her to the front door after a long day's work, carrying her briefcase in his other hand.

(2 Corinthians 9:8 NIV) And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work.

In Sickness and In Health...

There are times I think to myself, "I wonder if he'd like a redo on that?"

I met my husband when I was 16 and, according to him, it was love at first sight. I personally think it was the catholic school uniform, but I'm not going to diminish my effect. Anyway, we started out as friends and it blossomed into more. Ok, collective "awww"! He was always so flattering. He loved that I was a strong willed, take charge kind of gal. He's a very "go with the flow" sort of guy, and he liked the challenge that I presented. Back then, the challenge (as defined by him) was to get me to say "yes". I was always into something, in the mix, life of the par-tay, movin' and shakin'.

Fast forward to 2003. I had said "yes" some 9 years prior, then he gets wind that the wife's got ms. My husband's coping mechanism when the crap hits the fan is to go catatonic. So while I hoped for a giant hug, I got the catatonic stare. My initial and very selfish reaction was...this isn't about you, honey. I'm going through something here, ok? Suck it up! So I never asked him how he felt about it back then. But I felt bad for him. Going gets tough for me, I call my Mom. If it gets REALLY tough, I call my Dad. But my husband doesn't have that same support system that I have, nor does he have anyone to spill his worries to like I did. It was just him, all on his own. Unless...there's another personality in his head that he goes to hang out with while he's catatonic? I'll have to ask him in the morning!

Early on, we fought more often than not. All the sudden, it infuriated me if he walked past the full laundry basket without carrying it up the stairs. Or stacked his dirty dishes in the sink like a game of Jenga. I'd yell, "I shouldn't have to do such and such because I have ms and I'm exhausted and haven't stopped crying and my back hurts!" Sudden onset catatonia. Lost him again!

It took a few years before we started to get the hang of this ms thing. I'd communicate my daily "status" by putting a sign on the fridge. If it was one way, he'd know I was good to go. If another, he knew he had to do the housework that night. That was helpful to some degree, though his timeline for housework differs from mine. But afterwhile, we found a common ground. And let's not discuss how certain facets of ms impact husband/wife situations, right? Anyone with it knows, so I don't need to elaborate!

We recently celebrated 15 years of marriage and I can't imagine life any different. I love him more each year, each month, each day. But sometimes I lose focus on my blessing of being joined with him and let doubt get the best of me. I'm pretty much a complete 180 from the girl I was when we met and were dating, which is a very good thing. He married crazy, strong willed, party girl. I sometimes wonder if he ever wishes he could trade me in on a newer model that more closely resembles me circa 1994? Oh who am I kidding? He'd be bored if he were with someone other than me. I mean really, what fun is a wife sans lesions?

On our anniversary, I broke down and asked him if he ever wanted a redo on that vow. His response? "Do you want a redo on the 'for richer or poorer' vow?" Hmmm...sarcasm in lieu of catatonic state? In the words of Paris Hilton, "that's hot".

Friday, September 25, 2009

"Which One of You Is Here To Be Seen?"

That's what the lady said about 5 years ago when I went to a study at the University of Delaware, husband in tow. Him all pointing at me like, "duh!" HA! As I told him after I was signed in, "that's how good I look...they couldn't tell!"

Invisible symptoms are a blessing, but also a little bit of a curse. Let's face it, they're symptoms nonetheless, but when you see a person using a mobility aid at 30ish yrs old, you think, "aw, let me get that door for them, carry these groceries to their car, or load these 2 bags of rock salt into their trunk". But when you've got invisible stuff - meaning you're in pain, so tired you could fall asleep on your feet, or your emotions are off the chart - people are left to think, "what the?"

I've lost friends over my emotional highs and lows. A friend recently put it in proper words. She said if a relationship is based on whether or not someone makes you laugh or feel happy, then it's over if said person defaults on that. Only the deepest friendships are those that survive it and, in my opinion, are worth the effort. Another friend uses this quote, which I love. "I make mistakes, I am out of control, and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best."

So there I was, U of D, feeling like the Bionic Woman. Go into this room and do grip strength. "She's off the chart", said the college student! Then, I got to catch a ball! Really? You really want ME to catch a ball? Do they not know I was a collegiate athlete and have played ball from NY to FL and every state in between? Of course not, because I have ms. But I'll catch your giant red ball, just don't humor me with a stupid little toss. Wing it at me, alright? Challenge me. Touch my nose with eyes closed...check. Stand on one foot, close eyes and stand still? Sure, want me to crouch down on that one foot or even hop with eyes closed? Because I can do that, too. The therapist found me intriguing and struck up conversation. She said something like, "wow, it must be hard for you to have been so athletic and to now have a lifelong, debilitating disease". You know how just before you're in a car accident, everything slows way down? That happened to me at that moment. I had a full range of emotions that spanned from wanting to slap her in the face - to wanting to cry - to wanting to slap her in the face again. I shook her off like a piece of dryer lint and moved onto the next station which was...the shrink!

She asked to see me minus my husband, so the poor thing sat outside the door. He knows me too well, figured it would be approximately 2.2 minutes before I'd have enough and walk out. I walked in and sat down, awaiting the endless spew of knowledge she'd surely deliver. Instead, I got 20 questions, or maybe a handful before I left. My recollection may not be exact, but I'll do my best:

Q. "How are you doing with your ms?"
A. "Fine" (thinking to's not mine, lady)
Q. "You're fine with having ms?"
A. "I can't change it, so I try to keep a positive attitude. Attitude is everything."
Q. "How do you feel about having ms?"
A. "I dislike it"
Q. "What are you on for your ms?"
A. "my knees" (I then had to explain my medicinal drama, and how I'm in God's hands)
Q. "You have small children, are you sure that's in their best interest?"
A. "well, someone once said it's all about my 'quality of life', and I had no quality of life on that medicine." (I got that from dear friend/chiropractor:-)
Q. "You seem to not understand the seriousness of your condition. Do you understand that this is a lifelong, disabling illness?"

Explosion in 3..........................2...............................1........................

I yelled, "what do you want me to do, cry over it? 'CAUSE I WON'T!" Jumped up out of my chair, exited the office a la Kramer from Seinfeld, and saw my sweet husband sitting there with a look of concern. Me all, "we're outta here, hon"...pointing to the door. That's my husband in a nutshell. Always there in silent support, always a look of concern, and always just a little unsure of what I might do next. I think it keeps our marriage exciting, ya know? What fun is a predictable wife, I ask? Keep life spicy, I say! Though he may use another "e" word to describe our relationship. That word may be "exhausting".

Where's The Faith?

From "" - Jesus assures us that our heavenly Father will take care of all our needs (Matthew 6:25-34). Therefore, we have no need to worry about anything.

Yeah. I know all the Bible verses that address worry. I know that God is ultimately in control. As shared in previous posts, I'm have no man made weapons at my disposal to combat ms and the slew of symptoms I experience in a given day. That leaves me fully, totally, and completely dependent on Him. And really, isn't that what we're supposed to be? Head knowledge is one thing, but making it a way of life and keeping it as such is another. I'd say that most of the time, I'm at peace with my circumstances. But I still fail the trials when the going gets rough. Allow me to explain...

For the past 2 months, I've had this intermittent nerve pain in the back of my head, across my face, and into my ear. My hearing was muffled, my face felt like it was melting, and I'd get this occasional feeling of fullness behind one eye. So being the tough girl I am, I pushed through it, went to work every day, and tried to be the pleasant little Christian gal everyone knows me to be. But inside, I was thinking...I hope this goes away soon, because I cannot tolerate this daily pain. Two months later and the pain got stronger and became a daily thing, rather than a "once in awhile" thing. I hate pain. I especially hate nerve pain. So who came to visit? Oh hello, Worry! It's been a long ya been?

My story of wicked nerve pain ends well. I had a problem in my neck that dear friend/chiropractor corrected. Of course, there was no guarantee that the adjustment would fix all of my problems...and she never makes that promise. But she did her thing and I know she prayed me through. When I sat upright and didn't feel the "hot nails on my face", well, I couldn't get myself together! The tears of joy kept coming! Then joy turned to shame and I was inches from ugly crying.

Earlier in the day, I heard that other voice that we all hear when we get really depressed. I thought to myself, "is this it? I'm going to have searing pain for the rest of my life?" and I'd quickly run through 1 Thes 5:18 - "give thanks in ALL circumstances, for this is God's will for you in Christ Jesus". I'm sorry, but nerve pain sucks! Can't imagine giving thanks for that. Then came the worst of the worry! Can I be a great mom to my kids if I'm taking high doses of neurontin each day to get through? Can I go to work and function like that? Heck no, last time I took that stuff, I plunged my brand new John Deere straight into the driver's side door of my car! The great thing about neurontin? I couldn't have cared less! Sat there on my shiny green tractor, laughing hysterically! You know who didn't laugh? My husband, that's who...

So where's my faith? Do I give praise only when I'm walking, working, seeing, etc.? When the symptoms are tolerable? I usually feel like I walk side by side with Jesus. Last night, when I realized I had worried so much about enduring that awful pain and what it might mean to my parenting, my marriage, and my work...well, I realized I strayed from my walk. And it was emotionally overwhelming. I realized that, even in my unfaithfulness, He chose to surround me with people who love and care for me. People who could witness the rare occasion where I fall apart at the seams and love me nonetheless. And one particular dear friend, strong in her faith, to remind me where I'm supposed to be. I can't worry about tomorrow, because tomorrow will "worry about itself". Why didn't Annie sing about that? Tomorrow! Tomorrow! I'll feel worry...tomorrow! It's only a day away...

Thursday, September 24, 2009

MS Treatments - The Early Days!

Avonex, Rebif, Copaxone...oh my! Those were my choices as set forth by my neurologist at my very first appointment. Ever feel like a little kid in a lonely room with a grown up giving you choices you don't want to deal with? Mmm hmm, that was me. I remember that my previously mentioned dear friend/chiropractor was willing to make the journey to the appt with me, which was yet another moment where I was completely blown away by how caring and supporting someone could be. But I played the tough girl card. "No no...I can do it...I'm ok!" I was so not ok. I just remember sitting in that chair, wishing I was anywhere else, hoping Alan Funt was hiding behind the wall with Candid Camera and would pop out to say, "SMILE!". But Alan wasn't there. In fact, no one was. Just me and 3 boxes of medicine that I didn't want to take. As with anything, if the "do it for your kids" card is played, I'm in hook, line, and sinker. As I shook my head "no" to the 3 pretty boxes, the doctor said, "you're young, you have small children, you'd be doing this for them." Ugh...give me the once a week shot then, whatever.

Needles + me = spew! But I did it for my kids. The dr said to take it at night and on a weekend, so the side effects wouldn't interfere with my ability to go to work. So each Saturday at 11:30, I took my syringe up to the bathroom, locked my kids out, and OOOOOOOOOOOW! My first thought was...can this needle be any more dull? Second thought...One shot down, a lifetime to go! I was sore from head to toe within a few hours. Just a side effect, said the dr! With each week that went by, shot after shot after shot, the side effects were overwhelming. The all over pain and stiffness was so bad that I couldn't care for my kids, much less get to work. I decided to read the package insert. What a mistake...or not? I went back to the dr and said I was done with that crap! She got me to agree to another scan to see what "activity" may be present before we make a decision as huge as going off the medicine. Well, the scan showed increased activity. "The medicine can make it 2% of patients". Allow me to introduce myself! I'm 2%!

Since I have a general distrust of the medical profession, with the exception of dear friend/chiropractor, because she's never wrong, I decided I was booking an appt with THE best ms center in the country. Surely they would have a magic pill to give me that would make it all go away. Or maybe they'd say it wasn't ms afterall! Cleveland Clinic! Yes, I was sure the trip to Cleveland would solve all of my problems. In all honesty, it did help my marriage. My husband and I made a long weekend out of the trip and, for the first time in about a year of my being dx'd, he sat next to me to hear the verdict. While CC was nice and all, and the view from the hotel was beautiful, they didn't sneak me a magic pill, nor did they disagree with my dx. The trip was very hard on my husband, who stood at the pier and looked out over the water, crying. All 6'0", 250+lbs of him...crying. I remember not knowing exactly what to say or how to comfort him, because heck, no one knows what tomorrow will bring. So I told him to stop being a girl about it, sheesh. Looking back, I wonder how he stopped himself from throwing me into the water?

I then decided I was going to take supplements. So each day, I swallowed about 30 some odd pills. I still had a great deal of nerve pain, so I chased the supplements with some Advil. I went to a holistic dr in NJ and another in Quakertown. Eventually, I ended up in the hospital with ulcers. Crap.

I went to the sanctuary alone, knelt at the alter, and yelled at God. What exactly was I supposed to do now that NOTHING was working? No medicine, no supplements, no magic Alan Funt! I mean come on! And it hit me. I was doing exactly what He wanted me to do, draw near to Him. Now I'm not saying that everyone currently taking ms medications should throw them in the trash! I'm saying that I'm 2%...that's all.

Wednesday, September 23, 2009

What MS Feels Like To Me...

It struck me that I didn't share what symptoms I have on a given day! Geez, how can I utilize this as a therapizing blessing if I don't do at least that much? If nothing else, it will give those around me a better understanding of why I may act the way I do. Ok no, ms probably has nothing to do with my behavior. I guess I should own up to that honestly!

From here on out, MS will be called ms. It doesn't deserve to be capitalized, in my opinion.

I would say my first symptoms were cognitive...but I don't really remember. Oh come on, that's funny! Anyway, I worked in a company where everyone was assigned a key code to punch in with. Just 4 easy numbers. Can't tell ya how many times I set the alarm off just trying to get in! I didn't make any errors within my actual work, nor did I forget things where my kids were concerned. It just started as things like that stupid access code, my phonemail password, my computer logins, etc. I chalked it up to aging. 30 is the new 80, right?

Nerve Pain - (the burning, tingling, sharp sensations) in various parts of my body. My back felt sunburnt. Occasionally, I'd be having a conversation and get a sharp pain in the mouth and up the face. Remember chomping down on tin foil with your back teeth as a kid? Yeah, yeah! It felt just like that! Except there was no tin foil... Again, writing off the fact that something big was happening with my health, I chalked it up to multiple sports injuries. It was coincidence that the pain in my face was near where I had a couple of teeth knocked loose in a ball game. Oh yeah...I scored the run AND have a nice pair of false teeth to show for it! But I soon learned that my old injuries had nothing to do with these strange happenings.

Mobility - I noticed I was unable to walk my usual couple of miles per day for exercise, because my foot had a numb spot in it that would eventually make my legs go numb in a pattern similar to the inseam of your pants? It would wash down the outside of one leg, then up the inside, then cross over to the inside of the opposite leg, then the outside...and BANG! Down I'd go! Though I was quite round back then, I wasn't Weeble-esque enough to "wobble but not fall down". Oh did I fall! My solution at the time? Don't exercise...that stuff'll kill ya!

Vibrations - Oh behave. Not even going to say where I felt it! Rest assured, I've already heard and made every joke imaginable. Anyway, moving on! It was so strong that I could not sleep through it. It was beyond me how anyone sitting next to me on the sofa or laying next to me at bedtime couldn't feel it! I remember my parents buying a recliner with massager built in, thinking it would help my pain? I put the massager on and about went through the ceiling! That sensation, similar to a massager, is identical to the vibrations I felt. Good times!

Retro'ing - I call it that, because my neurologist didn't have a medical term. For example, I picked my kids (then only about 3 and 2 yrs old) up from my parents' house after work one day. I drove to my childhood home, pulled up out front, and it hit me...omg...I don't live here! I then tried to call my mom, because it's just what I do when the crap hits the fan, and I dialed my childhood phone number! Hey! You're not my mom! Admittedly, I was pretty scared that day. I remember my daughter asking why we were stopped there, and all I could say was, "I don't know, sweetie...I don't know". Not sure what came over me, but I regrouped and was able to get us all to the correct house!

Emotional Incontinence! Yes, FB's real. Even Wiki knows. [1] Patients may find themselves laughing uncontrollably at something that is only moderately humorous, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example. Come to think of it, I've been like this all my life!

Visual Disturbance - I can't forget about my "eye flies". I have black spots in my field of vision that float and dart around like flies. Because I bore easily, I consider them a blessing from God, because they keep me busy. Like when I'm in a boring meeting for work? Bored no more...I watch my eye flies!

Vestibular - misjudging myself in space! That's the funniest one I get! It's always the right side of me that catches the corner of the table, the door knob, or even the pillar in the middle of a room. Walls that slightly jut out for design? Oh yeah, I've walked right into them. I also have a nice flattened out spot on the right side rear of my pretty car. Stupid fence. It so wasn't there when I started pulling out...right? So on those days, I make sure to park away from everyone else!

Urinary Urgency - Probably the most inconvenient and bothersome symptom I have is bladder stuff. I have spent the bulk of my children's' field trips in the rest room. I know that the public restroom stalls are largely made by a company called Hiny Hiders. I'm blessed that my sessions with my students are 45 minutes long, because I can't hold it any longer than that. I have a friend who told me to try Depends if I'm on a trip or at a venue like say...Dorney Park...and don't want to keep running to the ladies' room? I haven't been able to do it out of pride. I feel like my mother will appear out of nowhere and slap me for knowingly peeing in my diaper. But I'll tell ya, the thought has crossed my mind. Maybe when I'm 40! Would anyone mind if I were urinating as I was having a conversation with them? I guess as long as I didn't say, "whew! That's better" afterwards?

Fatigue - oooooh yeah. I'm all for implementing a corporate naptime. Except my naps are hours long. There have been times I've said out loud, "you gotta get up"...and I meant me! I have willed myself out of bed on more occasions than I care to admit. Yet 8pm comes and I'm wide awake! Can't get to sleep at night, can't get up in the morning, fight to stay awake all day. Hey wait...I think maybe 37 is the new 17! 'Cause that's how I was back then!

Well, I think that's it for symptoms.

Over the years, I've learned not to focus too much attention on how I feel, because then I'm not able to focus on life! One thing my dear friend/chiropractor always talked about was "quality of life" and "affect". Heart you for instilling that in me, CST:-) But really, her words apply to all of us. I can't live the quality of life that God would have me live if I'm stuck on every trip to the bathroom, every weird pain, or fatigue. I try to count blessings one by one, not symptoms. Emphasis on the word "try"!

My 2nd Post!

And I promise the next one won't be "my 3rd post"! Ok, maybe it will. I don't know yet...

This morning I woke up and found that my hearing in my left ear ain't what it was when I went to bed. Remember the old commercial, "is it live...or is it Memorex?" Well, in the same cheesy commercial voice, I play the, "is it structure (meaning did I sleep wrong and my neck is a hot mess?) or is it MS? Time will tell, but in the meanwhile, I'm giving thanks to God for giving us 2 ears. I've got one that's taking a vacation of sorts, but the other one showed up for work this morning!

Maybe this slight hearing loss isn't the worst thing, and let me explain. I'm an educational therapist and work with children who learn differently. This job is a bigger blessing to me than anyone can imagine! This week, the students are cohesively whining, however. Kind of like when you called your friend back in Jr High and asked what they were wearing the next day...I think the kids got together and decided this week is for whining. Today, I'll only hear them perfectly from my right ear. I'll do everything in my power to stand so that my left ear is closest. I can see it now as they ask, "why do you keep standing on that side of me?" You know, I'd whine if I were them. The thought of some crazy lady telling me to trace figure 8s on a chalkboard and firing math questions at me as fast as I answer the previous one, in addition to all the other wacky stuff I ask of those kids...well, I think they're good sports! If they only knew how much I loved each of them, and how my daily prayer for them is that they reach their full potential in Christ. Ok so that may not help them to stop whining. Sure, they might feel a little better about their sessions but...

Off to the best kind of meeting ever...a breakfast meeting! Have a blessed day, all!

Tuesday, September 22, 2009

My First Post!

Hello? ...tap tap tap... Is this thing on?

So this is my very first blog. I was totally peer pressured into it by friends on Facebook. If it stinks, it's their fault...not mine!

Not quite sure where to start, so I'll choose to go with the day I learned I had MS. MS = Multiple Sclerosis. You know, holes in the head. I remember saying as a kid, "I need such-and-such like a hole in the head"! But I've discovered that holes are for cool people. I was always the cool kid, right? Just because I'm old now doesn't mean I lose coolness. In fact, I'm SO cool, I have them in my cervical and thoracic spine as well! Prince sings a song about holes in the head. And no one is cooler than Prince!

It was late August of 2003. My son and I were sitting in my dear friend/chiropractor's exam room as my husband was being treated. Earlier that day, I had gone for a brain scan. My mother, having such confidence in said dear friend/chiropractor's abilities as a diagnostician, insisted on taking the films to her that day for review. I still remember how she wouldn't make much eye contact with me, and was uncharacteristically quiet. Hmm, that told me that she knew what was causing my insane symptoms, and it was gonna hurt to hear it. As we were all walking out of the exam room, I turned to ask her if she had a chance to look at those films. She said yes, and that there were "areas of demyelination". Ouch! I rushed husband and son out of the room, because I was coming apart at the seams in 3...2...1. Didn't want them to see me ugly cry. Ya know, crying so hard you can't breathe and stuff comes out of your nose? Praise God for you, CST, I'm sure it was a hideous sight! But she hung in there and encouraged me with everything she had. She told me many things that MS wouldn't change in my life...perhaps the most memorable was that it wouldn't change the mother I was to my kids. My kids are my entire being. She must've known that my immediate thought upon hearing that dx was, "how will I raise them?".

Next came the hard part. The drive down to my parents to tell them. I walked in and asked to see them out back, away from my grandmom. Mom and Dad sat together on the swing and I said, "um, it looks like I have MS". Seemed like 10 minutes of silence went by before Dad got up and walked away, not saying a word. I remember the single tear falling down his face, though. Mom held me tight and cried. I realized that the message was definitely harder on the person relaying it.

So all this probably sounds pretty depressing, right? I agree, let's move on.

Four years earlier, I had come to know God. When your son is born with a rare GI disease and you spend several days in a scary hospital with even scarier initials to represent it, you have a way of finding your Savior.

My journey thusfar in my health, 10 years post initial symptoms, has been quite intense. I've had to leave everything I thought I knew of myself at the door, as well as every familiar self-measuring tool. When I was younger, my worth was validated according to how many newspaper headlines my athletic achievements could score. Or what that person thought of me...or that person, or that one. I spent a lot of wasted time and energy with that thought process! I have God now. With each curve MS threw, I gained more strength in Christ. Let's face it, I'm not out there rippin' up the field, court, etc. anymore as a headliner! There are days I lose feeling in my feet and legs just walking out to the mailbox! And judging my worth by what others think of me? Let's just say I learned quickly that my worth is rooted in who I am in Christ. I'm much happier knowing that:-)

My motto on MS is, "why NOT me?", as opposed to "why me". And my mantra is, "I have MS, but it doesn't have me". You will not hear me call it "my MS", because mine it ain't! It just is. Heck, I don't even like capitalizing its initials, so I usually don't! I try to find something humorous in it no matter the symptom. It wouldn't have always been that way, and I thank our Lord for that outlook!

Well, that's all for now. I promise this will be the most lengthy post of all, because it's the background for my random thoughts that FB friends seem to enjoy!