Tuesday, October 9, 2012

10 minute Tuesday

My post for 10 minute Tuesday!
-------------------------------

I'm trying to make dinner, but I keep getting distracted by the scene out my kitchen window.  Two of  my children and three neighbors are playing.  So innocent and cute, they are crawling around in the grass.  The two biggest boys are apparently running the game and they take turns leading the crawling children around.  Buckets are gathered and the crawlers pretend to eat from them. 

Oh yes, I am attempting to make meat loaf.  Not particularly my favorite but my four boys love it, so I make it for them.  Another glance out the window and I see my daughter laying on the backyard table while the rest of the children hover over her doctor-like. I see my son carefully lift her off the table and she resumes her crawling.

Two other kids, my son and his friend jump on the tramp.  I see them laugh and talk together as they jump.  The crawlers are now chasing each other around. I'm not really sure if the crawling game is over or if this is a new part of the game.

My two big boys are getting ready for soccer.  One child is pacing the floor, because his brother won't hurry up.  A trip to their downstairs bedroom tells me that the errant child can't find his soccer jersey.  He settles for a regular old t-shirt and they're on their way.  I am relieved that it's still (barely) warm enough and (barely) light enough that they can ride their bikes to practice.

I put the meatloaf in the oven and get ready to shred potatoes for hash browns. I had originally planned on baked potatoes, but at the last minute changed my plan.
-----------------------------------
10 minutes is up!

(The meal was delicious, if I do say so myself)

Friday, August 31, 2012

yoga for dummies

So. 
Yoga.
The picture above is pretty much what I picture yoga to be about.
Or this:

And while I have been doing yoga, yoga-ing, practicing yoga for about 6 months, trust me that I don't look like either of these pictures. Trust me.

It surprises me how much I like it.
It surprises me how much I need it.

I'm doing a very easy-beginner-free app that I put on my iToy. I do it in the privacy of my own home. Occasionally my kids will join me. It takes twenty minutes, it's nothing fancy. Think yoga for dummies.

The first time I ever tried it, I spent the whole time muttering to myself, "I feel like an idiot."  And the second time and the third time and so on......but then I realized that every time I did yoga, I felt better.
Every.single.time.

It's a good way for me to stretch out all kinds of muscles. I'm really bad at the "breathing" that is supposed to accompany the stretching, but I'm really just doing yoga as a way to facilitate stretching, so I wonder if it matters?

I try and do yoga at least 4-5 times a week.  Sometimes I make my goal, sometimes not. When I don't make my goal, I always feel it.  It's as if my muscles are tightening up like beef jerky that's been left out in the sun too long. 

The National Multiple Sclerosis Society refers to muscle issues as spasticity.

Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.
While this sounds like my problem, what I don't know is, if it really is spasticity or is it just a result of having to rest so much due to fatigue? 
That's what I like to do with MS, play the guessing game.  Well, it could be this, but maybe it's this. Or how about this? It does wonders for my peace of mind.
Regardless of what the issue is causing my muscle tightness, yoga seems to be doing the trick.  Even a dummy version seems to be helping.
Although, the real question is, if I bought a peach colored loin cloth would it work even better?


Thursday, August 23, 2012

How YOU doin'

Do you remember Joey Tribbiani from Friends? Matt LeBlanc in the hilarious role as a slightly clueless Italian playboy?



Every time he'd see a good looking girl he would say, "How YOU doin'?"

People ask me that a lot.  Though not necessarily in the Italian-Joey-I'm looking to score sort of way. Sometimes I think they really do want to know, but I know that sometimes we say it just out of habit. "Hi! How are you?" I have said those exact words to complete strangers, when truthfully I didn't know them or really care how they were.

Lately, I never really know how to answer this question.

I'm generally a private person (yes, I recognize the irony of a blogger saying that). And I'm usually pretty optimistic, so my normal built in response is, "Good!", or "Fine!" I don't even think about it, the words just fly out of my mouth.

One friend in particular, after hearing that response, looked me in the eye and said, "No really, how are you doing?"

Busted.

So I'm trying to be more honest in my responses.

But then I wonder if people really want to know?  Do they want to know that I feel crappy most of the time?  Doubtful.  Chronically sick people can be boring. 

So I'm trying out the response, "Depends on the day."  Which is true.  Sometimes I'm so-so.  Sometimes I'm terrible.

I hope that someday I can reply with truthful words, "I'm great, how are you?"

Until then, Depends on the day, is going to be my answer. 

Like it or not.

How about you?  Do you answer truthfully or out of habit?








Wednesday, August 15, 2012

shallow is as shallow does

I'm feeling very shallow today.

It's my hair.

Like most women, I want my hair to be something it's not.  It seems that if we're blessed with naturally curly hair, we want it straight.  If it's straight we wish for curls.

I fall into the naturally curly category.

My hair was a raggedy mess through Junior High as it slowly started turning from straight to curly. I was still brushing it with a brush every day wishing and hoping I could get "feathered bangs." A look that sadly (possibly thankfully) I never could master. My hair just wouldn't cooperate.  Real hair brushes and curly hair are a bad, bad combination that results in really poofy hair.

In high school, I got rid of the brush and had learned how to deal with all the curls, .  My long curly locks were the source of much admiration as all my friends paid big bucks to achieve their spiral curls with perms.

I was curly all through college and happy about it.  Naturally curly hair is easy to maintain and I considered it "my look."

After college when my first baby came, my hair started to loose some of it's curl.  After my second baby 18 months later (!) a lot of the curl was gone.  In a regrettable mood one day I had it all chopped off.  I pretty much looked like a boy and the curl was definitely gone.  It turned out that I didn't like looking like a boy and it took a long time to grow out.

Now here I am, 14 years and five kids later.  Slowly my curly hair has returned, but I've worn it straight almost the entire time.  I consider myself a straight hair person.

Enter MS.

The first indicator I had that something was wrong was when my right hand went numb for a week.
Eventually both of my hand were so numb that I could barely use them.  My straight hair was one of the first causalities.  I just couldn't blow it straight with a round brush and then flat iron it. Out of the question.  I decided going curly was the best option.

Great idea except for one thing.  I've hated it every single day since. I just don't like the curly hair anymore.  It's not me, it makes me feel like I'm 20.  (I'm not 20.)

Medication has given me my hands back (mostly) so, after weeks of deliberation, I decided to go back to straight hair.  There are so many aspects of my life that MS is making miserable. Things that I have no control over whatsoever.  But I can, to a degree, control my hair. I still have a choice.  And my choice for now is straight hair. 

I went to a hair salon this morning and got it cut.


It may be shallow.  It's definitely dumb.  It is just hair after all, but if it makes me happy that's all I care about.

I know that there is always the possibility that in the future of this dumb disease, I may progress to a point that I can't "do" it anymore. If that day comes, I'll go back to curly, but for now at least, I am in control of my silly hair.

Take that, MS.

Thursday, June 21, 2012

how weird is that?


Who would'a thunk?

Me 'n Jack Osbourn have something in common.

Besides our famous rock star fathers and fuchsia haired celebrity mothers, that is.

We've both been diagnosed with MS in the last year.

See him here talking about it.


(Thanks to this gal for the idea!)


Wednesday, June 20, 2012

me

Sometimes I'm sick of me.

No, really.

I not a "seeking the limelight" sort of person.  I prefer to be behind the scenes.  Someone told me in high school that before knowing me, they thought I was stuck up, because I seemed so quiet. It seems like an odd association but then again, it was high school.

So when the news of your diagnosis makes the rounds with your family, friends, neighbors and church associates, all of a sudden it's hard to be just "you."

You are suddenly the girl with MS.

MSgirl.

The one with MS.

MS R us.

A complete stranger, who had heard of my diagnosis wanted to talk to me about it a few days ago.

Is it wrong that I get bugged by this?

I spend enough time in my head pondering and worrying if my latest numbness or pain means I'm getting worse, or is it just a bad day? 

I realize that people are concerned and empathetic about my situation. I know this.

But I just want to be me.  I'm the mother of seven amazing kids.  I'm creative.  I like all kinds of music.  I play the piano (sort of).  I like to sew and decorate my house.  I like to plant flowers.  I love to read.

MS is just a small part of me, at least for now.  It doesn't define me, yet.  The day may come that I am incapacitated by it, but for now I just want to be me.

Just me.

Monday, May 21, 2012

planner schmanner

Do you know what I hate about MS?  Oh well, there really aren't enough words to answer that question, but the one thing I'm thinking of today is ---I can never plan for anything.

Generally speaking I am a pretty disorganized person.  I never owned a Franklin Planner (uhhh, does that date me?), half of my life is written on a paper calendar and half of it is on an iToy. I like to say that I have too much creativity running rampant to organize my sock drawer or closet, but maybe that's just laziness.

Still though, sometimes I would like to be able to say, "Yes, on Thursday I would love to meet you for lunch."  That's the kind of crazy, outlandish planning I did back in my old life.  My pre-MS life.  I knew that barring a major natural disaster or a really bad hair day, I could plan on lunch and go to lunch on Thursday.

Not anymore.

I can't plan ahead.

I may have all the desire in the world to meet a friend for lunch on Thursday, but I know now that I may wake up Thursday morning barely able to get out of bed.

It stinks.

I mourn the time when my biggest problem was a bad hair day.

How about you?  Can you plan ahead?

Tuesday, May 8, 2012

Ann Romney

I don't want to talk about politics, but I do want to talk about Ann Romney. I don't want to talk about Mitt, their money or whether she "works" or not.

I do want to talk about the fact that she has MS.  Just like me. 

You see MS doesn't discriminate. According to the National MS society website,  In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. 

There are a whole lot of us. One big happy (?) party.

Ann isn't alone in her celebrity MS status, Alan Osmond and his son David, Annette Funicello, Prichard Pryor and Montel Williams all have MS.

I don't really know if Ann will change her residency to 1600 Pennsylvania Avenue Northwest Washington, DC next January.  I hope though, that the current shine of the media spotlight on her life and naturally her MS, will be for the good. 

My hope is that, a possibly really, really famous person struggling with MS will help shine the media spotlight on the rest of us.

The rest of the big happy (?) party.




Friday, May 4, 2012

if I only had a brain


Yesterday I bought a weekly pill organizer.  Yes, just another hit on my pride. I previously thought pill boxes were for really old demented people or really sick people. I am only sort of old. And I like to pretend that I'm not sick.

Yet, I came to the conclusion that I need a pill box.  I take Gabapentin in the morning and at night. Several times this week at around 11am the strange thought came to my mind, "Did I take my pills or not this morning?"  I didn't know the answer. 

It seems that when you are in a routine of taking pills every single day, eventually those days begin to run together in your mind and all of a sudden you can't remember today's events from yesterdays.  It's annoying and embarrassing and a little funny all at the same time.  Seriously, by 11am I can't remember what I did at breakfast time?

So enter the fabulous pill box.  It's actually going to be pretty handy.  Today at 11am I realized I had not taken my pills (again! Hello?!) and the pill box confirmed this.  Maybe I should re-think those thoughts about "really old demented people" because that makes 4 days out of 5 this week that I have taken my medicine late.....

So how about you?  Do you use a handy pill box or do you still have a brain?

Tuesday, May 1, 2012

C is for Copaxone


The week after my diagnosis, I sat in a Neurologist's office.  He was pretty matter of fact, stating, "I'm pretty sure you have MS, there's no cure, but some drugs are available."  He then handed me pamphlets for three different drugs, Avonex, Copaxone and Rebiff and said, "Study these and pick one."  I should have been a neurologist.

My husband and I studied the literature separately and came to the conclusion separately, that I would start with Copaxone.  The side effects presented in the literature seemed mild compared to the other drugs.  I was not that excited about the prospect of a daily shot, but decided the benefits of minimal side effects outweighed my aversion to a daily shot.

Several weeks later, a month's supply of Copaxone arrived on my doorstep and the following day a nurse came to train me on how to self-inject. The nurse was very kind but the whole experience was very overwhelming.  She showed me and my husband how to use a syringe and had us practice on a little plastic pyramid that had a rubber sheet at the top which a needle could go into.

The nurse handed me a syringe to practice on the plastic pyramid.  As I held the syringe in my shaky hand, I started to cry.  That moment was a crushing reminder that my life would never be the same.  I remember crying and saying, "There's a reason I was not a nursing major! I don't like shots!"

I am happy to say that once I composed myself, I learned how to inject properly, although using a self-injector helps a lot.  I don't particularly love injecting myself every.single.day. But for the most part it's no big deal, I've been doing it daily for about 5 months.

So. Do I like Copaxone?  Honestly, I'm not really sure.

Copaxone is injected daily, like I already said, and you must inject into a new spot every single day.  So over a weeks time, I inject into both arms, both hips, both thighs and my stomach.

I'm just not sure if the Copaxone likes me.  Every time I inject, I get a huge hard, red, hot welt that lasts for about 5 days until it fades into just a purplish bruise.  These welts are usually about 3-4" wide.  I look like some kind of drug addict.  My thighs seem to react the worst, which I can't really explain since my arms are much skinnier, so it seems logical that they'd be in the worst shape. On each leg I have the current welt, last week's fading welt and the faint marks of the two week old welt.  Trust me, it looks sexy.

I've talked to Copaxone's customer service people, "Shared Solutions" multiple times.  They are very friendly and helpful(?) it's just that none of their advice had changed my welt situation. They've recommended warming injection site before injecting, or an ice pack on the site after injection, or both. They've recommended adjusting my needle depth higher and lower. I've tried all these things and nothing is working.

I do think I feel a little better.  Is it the Copaxone?  I don't know.  Maybe it's the Vitamin D I started taking.  Maybe it's just a coincidence and I would have felt better now anyway.

One thing I know for sure, I will not be wearing a bikini* this summer.






* Ha, ha. I've never worn a bikini.

Friday, April 27, 2012

a smash bang job


Yes, this is my car with the driver's side window obliterated.

I don't even know what happened.
I was driving to my son's competition at the high school.
I was about one block from the school in the left turn lane, waiting to turn.
All of a sudden I head a loud bang on my left and turned to see the window cracked into a bazillion pieces.
I don't know if a rock hit it or if someone driving past threw something at my window.
I managed to drive through the light and then stopped and called my husband and 911.
I then drove the rest of the block into the high school parking lot,
causing the smashed window to fall into my lap.


A policeman came to take a statement.
He was super helpful, especially when he said, "Personally, if I was a person* I would go to a car wash and use one of those vacuum thingys to take care of that glass."
And then he left.
Yes, I realize at that very moment there was probably an armed robbery, a murder and a tsunami taking place so he couldn't help me one little bit.
~
Not only did I have glass bits sticking out of my clothing and in my shoes, but how exactly was I supposed to drive away to that magical car wash, with my seat and door and everything full of glass?
~
So I did what any self respecting 40 year old woman would do,
I called my husband and cried.**
He made arrangements for (a different) son's soccer game and came and rescued me.


Needing to be rescued makes me frustrated and embarrassed and grateful all at the same time.
But, I guess we all need rescuing at one time or another.
The trick is focusing on the "grateful" part and forgetting about the rest. 




*obviously he was a robot.
**sometimes I really hate being a girl.

Monday, April 23, 2012

unexpected

Life, I am sure you know, is unexpected.

I didn't expect to have four sons. I didn't expect to have three daughters. I didn't expect that one of these daughters would only spend 14 days on earth. I didn't expect to have grey hair quite so early. I didn't expect to live in Ecuador for 16 months. I didn't expect to love my neighborhood so much. I didn't expect to have such an amazing husband (though I hoped for it). I didn't expect to be such good friends with my sisters. I didn't expect to be so flat chested (although I should have known!).

I didn't expect to be diagnosed with MS a month before my 40th birthday.

I'm still not used to it.  Sometimes, I think in my mind, it's like having the flu.  Something that will knock me down temporarily, but I will eventually bounce back to normal. I'm having trouble adjusting to the finality of MS.  It's not going away.

I had a really good week last week.  I felt better than I have in a long time.  I got lots done around the house; cleaning, sewing projects and other things I've wanted to do for months.  Although sadly my pile of ironing didn't get any smaller.

I start to think, "I'm better! It was a rough couple of months, but now I will be normal again!"  These are happy thoughts.

Yesterday we went to church, ate a delicious meal together as a family, then went to see our darling newborn nephew at the hospital.  The weather was gorgeous and I was happy.

We returned home after the hospital visit and as I was changing clothes, I started to feel a change.

Within 10 minutes it seemed like every molecule of energy in my body had been sucked out.

I slowly shuffled to the couch and could hardly move the rest of the night.  I am the same today.

Life is unexpected.

Thursday, April 19, 2012

dandelion dilemma

Every spring we get a lot of dandelions in our yard.
Last year I spent a lot of time spraying each individual flower with poison.
It was a lot of work and frankly a big pain, and physically I'm pretty sure I'm not up to it this year.
~
So I decided on a lazy different approach.
I told my six-year-old last week I'd pay him a nickle for each dandelion flower he picked, figuring at least they wouldn't go to seed and make a million more dandelions.
~
In a very short time he racked up twelve dollars.
I could see that I needed to change my game plan.
~
This week I told all my kids I'd pay a penny a flower.
~
I seriously underestimated how many dandelions there are in our yard.
~
I now owe the kids close to $30.
And a day later there are a ton more dandelions growing.
~
Apparently I need a new business plan.
I think my new plan is going to involve lots of emotional fist shaking and the words,
"Curse you dandelions!"
~
(At least it will be cheaper!)

Tuesday, April 17, 2012

morning



I am not a morning person.
I never have been. 
My mom laughs about my teenage grumpiness in the mornings.
(I'm glad she can laugh about this!)
But now, it's 2012 and I am 40 (!) years old....
I am still not a morning person.

So why oh why, did I make an orthodontist appointment for my son at 7am this morning?
Meaning, I had to take all 5 kids with me and leave the house at 6:45am.
I have no idea.
The stop at a donut shop afterwards almost made it worth it.
(The kids think it was definitely worth it.)

Friday, April 13, 2012

a gift

We went to a surprise birthday party last night for a neighbor who, not that long ago, didn't know if he'd ever see another birthday. 

When we moved to our neighborhood a couple of years ago, he and his wife were one of the first ones to come and visit.  I felt embarrassed as my children acted, well, like children. They were excited to see visitors and ran around happily to and from the room we were sitting in.  Our new neighbors both sighed contentedly.  They lamented their quiet, empty house lacking in the joyful noise of children.

About a year ago, the first signs of cancer appeared, heartbreaking for his family and our neighborhood.  He declined rapidly.  The cancer and the drugs treating the cancer quickly ravaged his body.  Yet his spirit was cheerful and optimistic.  Soon his appearance was so altered we hardly knew it was him.  He continued happy and kind.  After a while I forgot what he used to look like.

I often saw him puttering around his yard.  He came to church with a surgical mask on.  He couldn't shake any hands out of fear that germs would compromise his already struggling body.  I never saw him without a smile.  He would often tell me, "I told my wife this morning, it's gonna be a good day, I didn't die in the night!" Then he would laugh gently at his own joke.

The party last night was well attended.  He seemed surprised that people would come to celebrate his life.  What he doesn't understand is, that he is a gift to us. A friend, a neighbor, an example.

On days when I feel down physically or emotionally, I hope to remember our neighbor. "It's gonna be a good day".

********
In slightly less emotional other news:
I saw a beat up old black truck today that had the words "Truck Norris" printed on it's hood.  And yes, the driver was sporting a mullet. 

People are awesome.

Monday, April 9, 2012

iParking

(Pardon the silence, it's been Spring Break for my kids!)

I own a couple of iToys, and I love them.  A lot. How about you? Do you iGadget?

When Steve Jobs died there was a lot of media coverage on his life and mention of his biography.

Intrigued, I got the book from the library and started to read. I enjoyed reading about his childhood and his teens and early twenties, but once he became a full fledged adult, the thought kept coming to me, "This guy was a real jerk." One of the main themes for the last 2/3 of the book was how badly he treated everyone, how he wanted full control of everyone and everything, how he played mean mind games with all his employees, etc.

Now, don't get me wrong, I have no doubts that he changed our world, mostly for the good. But, changing the world and thinking YOU rule the world are two entirely different things.

The book mentions several times that he had no regard whatsoever for handicapped parking spots. He felt like he had the right to park wherever he pleased, and did so, often in handicapped parking spots.

This really burns me.

In my pre-MS life I wouldn't have dreamed of parking in a handicapped spot.  I don't recall giving it much thought, but I knew those spots were not for me. Then, a few months ago, my husband insisted I get handicapped parking license plates.  It was painful to admit that there are often days when I really do need that extra help.  On days when I don't, I don't park there, freeing up the spots for those who need them.

A couple of weeks ago, I drove to our local high school to watch my son compete in a debate tournament.  I arrived after school hours and the large parking lot was almost empty. Except for the lady who was sitting in her car parked in the handicapped parking section, sideways. She effectively blocked the majority of the handicapped parking spots. With no other option available, I took the remaining spot that was furthest from the school.  After a few minutes her daughter came out of the school, got into the car and they drove away.  I may or may not have mumbled something to myself resembling the words, "Stevette Jobs".

I realize that Stevette Jobs probably parked there innocently, knowing that school was over for the day. Stevette Jobs probably thought, "I'm not going to get out of my car, so I'm not actually parking here." I am sure it didn't even cross her mind that she would inconvenience someone.

That's exactly the point.

Don't be a Stevette.

Monday, March 26, 2012

Katniss, Panem and Me

I'm sure you're aware of the latest craze to take the country by storm.
The Hunger Games.
The movie, based on the book, made about a ga-zillion dollars over the weekend, my $12.00 included. I happily handed it over after months of anticipation.

I enjoyed the book and I enjoyed the movie.
 (Despite the brutal premise.)
Yet while watching the movie, I had a strange moment of reckoning*.

While Katniss was being dragged up to the stage to face her destiny,
 I momentarily felt just like her.
I am a prisoner in a war that I didn't ask for.

Then I realized, oddly enough that I am Panem and The Capitol too.

My body, that five months ago decided to quit functioning properly, is Panem.
It's where I literally live, no matter how disfunctional it may be.

My MS is The Capitol.
It chose me.
I have no choice.
It governs unjustly.
I try to survive.
It changes the rules on a whim.
I try to adjust.
It strips away my dignity.
I persevere.
It tries to break me.
I resist.


Effie Trinkett, spokesmouth for The Capitol is fond of saying,
"Happy Hunger Games! And may the odds be ever in your favor!"

My wish to you is the same,
 May the odds be ever in your favor, May you beat The Capitol at their own game.
Whatever your Capitol may be.




*Yah, yah, I know it's all fiction. Work with me here.


 
I selected this post to be featured on my blog’s page at Multiple Sclerosis Blogs.

Wednesday, March 21, 2012

my marbles

Sometimes I feel like I'm losing my mind.
Yesterday for example, I picked my teenage daughter up from her job 30 minutes late.
 In desperation, she started walking home and then I drove right by her.
She is mildly amused by my craziness.

Then I came home and realized a deadline for a Cub Scout activity was upon me. I spent a good hour frantically getting the things ready, wondering "why did I wait until the very last minute to do this!"
My husband kindly informed me that Cub Scouts is tomorrow.


I can often be found muttering to myself, "I am losing my marbles."
My three year old sweetly asked me, "Did you find your marbles mama?"


I have to wonder, is this old age? I'm only 40. 
 Is this what they refer to as MS brain fog
 Or am I just literally losing my marbles?


I suppose there is no way to truly know, but if you happen to find my marbles, could you please return them!?



(My daughter last summer.)

Friday, March 16, 2012

confession and giggles

Confession:
I don't really like to exercise.
I am NOT one of those people who have "run a marathon" on my bucket list.
The only running I do, is to the fridge to refill my ice cream bowl.

Yet, with MS, I need to be exercising.

I know this, but it's still a struggle to motivate myself.
Sometimes I'll have a really great motivated week and do my Yoga and Treadmill daily.
Then for no explicable reason (other than laziness), the next week I will do NOTHING.

Awesome.

I came across a web site lately that is really helpful in motivating me to get off my duff.
This site has all kinds of great MS related articles and advice.
Dave Bexfield (the founder of ActiveMSers) is hard core active and features MSers who ski, hike, do triathlons, etc.

As I said, I'm not aspiring for any of that craziness,
but I would like to feel better physically and mentally.
And, I would like to say I walked on my treadmill for two whole weeks in a row!

ActiveMSers.org also sends out a e-newsletter chock full of great tips.
Yesterdays newsletter for example, talked about Kegels.
What? You don't know what Kegels are?

I've had seven babies so I definitely know what Kegels are,
but the word Kegels makes me giggle.
Although truthfully, the definition of Kegels just isn't exciting enough to justify my giggles.
So I decided to make up my own definitions:

Kegels: Irish snack food. As in, "Aye, wee laddie, pass me a 'nother Kegel to go with my Pint and Kiss the Blarney stone while you're at it!"

Kegels: Hair conditioner. TV Commercial featuring unbelievably beautiful model with unbelievably massive mane of hair, "Ladies is your hair limp and lackluster? Dry and damaged? Try Kegels for ultimate protection and hair satisfaction"

Kegels: "Must have" toy of the holiday season. Scene: Harried mother and father who have visited every Toys R Us in the tri-state area. Mom, "Honey if we can't find that Kegel, little Suzy Schnukums will be devastated!" Dad (involuntarily shuddering), "I can almost hear the screeching now!" Mom, "We have GOT to find that Kegel! I don't care what it takes, we will not deny Suzy Schnukums her Kegel happiness!"

If you're interested in the real definition of Kegels,
it can be found here.

Now go do your Kegles!
(giggle, giggle)

Thursday, March 15, 2012

happiness

I feel like I have so much to be happy about.

I have a wonderful, supportive husband, 6 (yes, SIX!) amazing and funny kids, a home and good friends.  There are tulips peaking out of the dirt in my yard, my three year old has adorably curly hair, I can eat chocolate whenever I want, I wore my blue converse today, I spent a great evening with awesome friends last night, my favorite jeans don't have a hole in them yet.  You get the idea.

Yet, sometimes, lately.....

I struggle.

MS can do that to you, I know.

Today I decided to start a gratitude journal.
Writing things down is therapeutic for me.
 I enjoy the process of putting my scattered thoughts
 into coherent (or sometimes not) sentences.

I think it will help me each day to remember my blessings.
And on days I am struggling, I will look back at what I've written and remember.

We all need to remember and recognize the good things in our lives.

For today:
I am thankful for beautiful blue skies and the warm sun.

What are you thankful for?



Wednesday, March 14, 2012

newbie

I am new at this game. It’s been five months, one hundred and fifty one days to be exact, since I experienced my first MS symptom

To those who have struggled with MS for many years, five months may seem trivial, but to me, as a so-called beginner, it’s been a long five months. I feel like I’m just beginning to understand the changes in my life, I am just beginning to learn how to deal with these changes.  In other words I feel like a MS preschooler.

Do you remember preschool? For most, it’s a happy time of life. MS and preschool are surprisingly similar!

ABCopaxone.  Preschoolers learn their ABC’s.  The first thing I did was learn about was the various drugs available for MS.  I chose Copaxone and inject myself daily. Did this scare me to death at first?  Yes, (I may have cried) but now that I’m experienced, it’s no big deal.

Nap Time. Do you remember rolling out a mat for your preschool nap?  Turns out, a daily nap works great for MS too! At least that’s the excuse I keep giving myself.

Recess-it’s not just for kids! Possibly the best part of preschool was recess.  I have very few memories of preschool, but I do remember sliding down a slide at recess time. In MS, “recess” is simple:  Exercise daily!  I walk on my treadmill when possible. Something as simple as stretching also helps me feel better.  I have a beginner’s Yoga App on my iPad that I’m starting to love too. Do what works for you.

Arts & Crafts.  Every month Copaxone shows up on my doorstep, packed in ice, in a Styrofoam cooler.  The coolers are starting to pile up in our garage.  My children happily used two of these coolers to make Valentine’s Day Mailboxes to take to their school Valentines parties. What other creative ways can you think of to use those coolers?

Dress Ups.  Did you have dress ups in Preschool? A box of costumes that facilitated becoming someone or something else?  These days I feel like I am constantly wearing a costume.  My first MS symptom was numbness in my right hand.  After a few weeks, the numbness escalated into outright pain.  Not being able to use my hand interfered with my ability to blow dry and straight iron my hair.  So I gave up the hair battle and have gone naturally curly, which is much, much easier.  Do I like my curly hair? I’m trying to.  I still feel like it’s not really me (ironically), hence the “costume,” but I’m trying my best to adjust.

Story Time.  Where do we get our MS stories?  From the Internet of course! There are many great online resources for MS.  In the early days soon after my diagnosis, I spent time reading all kinds of information online.  After a while though, it just got plain depressing.  The uncertainties of MS can be scary for newbies, but it is important to be informed of all the good, the bad and the ugly. Knowledge brings power!

Field Trips.  We get to take field trips too!  Trips to your doctor’s office can be fun!  Ok, maybe not fun, but at least helpful.  And maybe if you’re lucky, you’ll get a sucker.

Play/Game time.  Are you exercising your brain?  I’d never played a Sudoku game in my life till a couple of months ago.  Try it, your brain will thank you!

Wash your Hands. We learned in preschool how to wash our hands.  This is more important than ever, keep those germs away, keep yourself healthy.  Always remember to wash your hands before injections.

Graduation! I’m going to go out on a ledge here and assume you graduated from preschool with flying colors. I did too!  This gives me hope that sooner or later, I will be a graduate of MS preschool.  Wish me luck.