Friday, November 15, 2013

Overheard: kindergarten love edition

"Mom? Do you want to hear something really gross?"

"Uh, ok?"

"Connor is in love with me. He told me on the bus today."

"Hmmm, what did you tell him?"

"That I was NOT in love with him."




(Bwa ha  ha ha ha ha. Little heartbreaker.)

Wednesday, November 13, 2013

eight year old woes or why parenting is hard

Last week at Parent Teacher Conferences we got a letter from H. It's so adorable I decided to post it here. I wanted to just scan it for the added handwriting effect, but it's written very lightly in pencil and I doubt it will come out.

Dear Mom and dad I wanna new bike. And you always tell me to go play outside. And my bike and kindove everything else is a handy down And I don't even know how old it is. And even kindove junky and old and rusty. And it is super super hard to pedal it. And it's seat is really relly hard.
Name: H.

Truth be told, his bike IS really old and junky and rusty and a hand me down. I'm not sure about the pedaling, but I do imagine the seat is really hard.

Life is hard when you're the fifth child.

Especially when, while your parents find your letter adorable to the max and they would love to rush to the store and buy a new bike based solely on the adorableness.... truthfully, they aren't exactly moved to get on the "new bike" bandwagon.

The reality is that you have trouble taking care of the current rusty junky bike......and your scooter, and your ripstick, and your toys, and your balls and your clothes and your shoes. Your definition of putting things away is dropping them in the yard, the house or your room and walking away.

Our definition is different.

So my darling boy, let's work on this together. You practice putting things away (our definition, not yours) and we will think about a new shiny bike.

Deal?

(Oddly enough, H is a great worker, despite his slovenly ways.)


Tecfidera Update: Tomorrow will be four weeks.  In the last week I have had no stomach issues and only had my face burst into flames twice. Progress!

Monday, November 11, 2013

weekend funnies

-Yesterday at church the kids were being asked what they were thankful for.  When it was eight year old H's turn he said, "I am thankful for Genetic Engineering."  I mean, really, Who isn't?

-Also, yesterday, ten year old S was complaining for a long time about a stomach ache. I asked him multiple times if he had done the usual things to relieve a stomach ache, and he said he had.  A few hours later he was still complaining, so I started thinking out loud to myself and said the word appendix. He asked about it and I explained that sometimes your appendix gets really sick and has to be surgically removed.

And with that bit of news, I never heard another word about his stomach ache. Apparently the word scalpel is an instant cure.






Thursday, November 7, 2013

Tecfidera - the costs

Ok, folks, I've been on Tecfidera for three weeks now.

Since I wrote about it last week, I've had ups and downs.  Almost literally as I clicked my "publish post" button, a stomach ache started. A stomach ache to end all stomach aches.  It lasted about 2 1/2 days and was so bad I could hardly get out of bed. But since then I've been fine and my face hasn't burst into flames either. So I guess that's good!



I'm thinking today about the costs of Tecfidera. It costs $54,900 a year.(!)

After my insurance kicks in, my price is $1587 per month. Which is $52.90 per day, $26.45 per pill.There is co-pay assistance available, but it runs out after $10,000/year which means after six months the $1587/month is all on me.

This excellent article, states that: "The rest of the cost of Tecfidera has nothing to do with what the ingredients are - it's all about what Biogen had to pay to get it on the market, and (most importantly) what the market will bear. If insurance companies believe that paying fifty thousand a year for the drug is a worthwhile expense, the Biogen will agree with them, too."

This article, states that Biogen Idec, who manufacture Tecfidera had a 32 percent jump in their revenue in the third quarter. Biogen is obviously making money off Tecfidera,  yes, along with the two other MS drugs they manufacture, but it's clear that Tecfidera had increased their earnings substantially.

I get it. Drug manufacturing is a business.  They are in it to earn money. BUT, but, I can't help but bristle that prices are set according to what the market will bear, according to what the insurance companies will bear.

How about what the people who desperately need these drugs can bear?

I understand that the drug companies need profit, but really? $54,900 a year per person. That's a lot of money.

It's estimated that 2.3 million people are affected by MS worldwide. I am one of those people. Just a regular girl hoping that one of these MS drugs will help my sick body.

In addition to being just a regular girl, we have a regular income. I'm a stay at home mom, we have 6 kids. My husband is not Donald Trump. I am not Oprah. We are not wealthy. We are regular, and to be honest $1587/month is going to be a stretch.

Thanks, Biogen.




Wednesday, November 6, 2013

alejandro

Two weekends ago, the day my teenage daughter, R, had been dreading for weeks came upon us.

She became a mother. A mother specifically to (anatomically correct) Asian baby boy "B" who she lovingly called Alejandro, lest he be confused about his racial identity.

Alejandro would be among the living for about 50 hours and she was required to take care of him, as if she were his real mother and as if he were real. When he cried (through a speaker in his belly) she was responsible for figuring out what was the matter. Did he need a diaper change, a bottle, a burp or rocking?

Alejandro was heavy and life like, complete with a bobbly head. He came with a computer chip embedded that reported back to R's teacher if he was properly being taken care of.  A chip in his diaper that reported back to the teacher if his diaper was changed in a timely matter.  If his head bobbled too much it told the teacher. An electronic bottle needed to be held right to Alejandro's mouth for the proper amount of time.

Serious business, right?


The part that she was least excited about was the fact that baby Alejandro was programmed to cry intermittently during the day and during the night. The point being that baby Alejandro was supposed to be like a real baby, and real babies cry all day and all night.

"I'm going to get NO sleep for two whole nights! It's going to be terrible!" she moaned before Alejandro even showed up.

I assured her that no one has ever died from sleeping poorly for two nights. She seemed skeptical. Teenagers, you know, they need their sleep. And then I laughed to myself because her room is in the basement.  Hey, I'm just the fake grandma, there's no reason I need to lose sleep too.



The day came and R got the baby from her teacher and then raced home from school, dropped him off and headed back to basketball practice. So in the first two hours of Alejandro's life I had to baby sit. Welcome to fake grandma-hood.

Frankly, it was nerve wracking.  I was afraid it (he?) would cry and I wouldn't know what was wrong. And what if I jiggled the head when I picked it up and the computer reported it?!?! It was really quiet for the first hour and a half and we wondered if it was even alive. Then we realized it was breathing.....well, the sound of breathing anyway. Then out of the blue it started crying. A recorded baby cry that sounded totally real and slightly creepy.

Let me tell you, a fake baby that actually cries is highly interesting to all the assorted neighborhood kids that happen to be moving herd-like through your house (ask me how many times a day I say, "shut the door please!"). I had quite the captive audience as I attempted to soothe the crying fake baby.

When Miss Basketball got home, I happily handed over Alejandro and she tended him for a whole hour before she had to leave to fill her volunteer time with the disabled. This time, she had made arrangements for her friend next door to babysit while she was gone for the next two hours.

Let's all say it together now, "deadbeat parent".

Ha, just kidding. After that, she was totally hands on. Night and day, she was mothering cute (creepy) Alejandro. She even took him out on the town on Saturday for a serious shopping expedition with her aunt (who tried her hardest to hit all the major local shopping delights while they were visiting).

And then, as quickly as he came, he was gone.  He breathed his last creepy electronic breath, and we all sighed in relief.

Teenage motherhood is not something I would predict in R's near future, and mothering Alejandro just reinforced that fact. She does not want to be a mother now. Someday, yes, she will be an amazing mother, but for now we are both content that she's an amazing kid.

Tuesday, October 29, 2013

Tecfidera - report card

I started taking Tecfidera on October 17th, twelve days ago.

The first time I took it, I felt a little trepidation as I held that blue pill in my hand ready to swallow. I wondered if my face would immediately burst into red hot rashy hives.  Fortunately, it did not.  I took the pill and pretty much forgot about it until 5 1/2 hours later when I started feeling really hot.

Sure enough the "flushing and redness" side effect had hit. And boy did it ever hit.  I looked like a  red hot mess! After about an hour the effect had worn off and I was back to normal. The next day I only had a little trouble with the flushing, it seemed to be at about half the strength of the initial day. By the third day I didn't have any trouble at all.

Also to note, I didn't have any of the listed "stomach trouble" during the first week. I was really careful about taking the pills with a meal.

After the first seven days, the dosage doubles.  I took the new pill, again wondering what would happen. It turns out that the higher dosage was definitely noticed by my body. I spent the initial day with some pretty intense stomach distress (TMI, sorry!), but by the second day I was better.

I also experienced the flushing and redness for about an hour the first day, but again, by the second day it was better.

Since that first day of the higher dosage I've hardly noticed any side effects. Yesterday however, I had a little stomach rumbling (but nothing too terrible) and then a few hours later my face burst into lovely shades of blotchy red that lasted about an hour. I don't know at this point why it hits some days and not others, but the side effects are supposed to get better with time.

Overall, the side effects have been tolerable.

The most noticeable obviously is the red faced flushing.  I've been at home every time it's hit and my kids tell me, "Your face is really red!" If it hits when I'm out in public, I suppose I may have to explain why I look like Katniss Everdeen, the girl on fire.


Overall, I would say I've been happy with Tecfidera, red face and all.

Thursday, October 24, 2013

heroes and hope

Last weekend we watched The Amazing Spider-Man with our kids. Since we are such a boy heavy household we watch a lot of super hero movies. I will admit, I do like the occasional super hero movie.  What's not to like? Handsome muscly men flying or swinging or jetting around the world saving the day. I don't want to watch them over and over and over like my sons do, but once or twice is ok with me.

I enjoyed the movie. I think the actor did a convincing job portraying a goofy, awkward teenage boy. The movie had comedy, a little romance and adventure, all important elements for an enjoyable experience.

The part that I most enjoyed though, was watching it with my family.

I loved hearing my boys laugh and laugh at the funny scenes. I loved hearing them whisper to themselves, "That's so awesome" while watching a completely unrealistic (although admittedly awesome) scene.

I loved watching them watching the movie.

I think super hero movies are popular because we all want to believe that good will always triumph over evil. Yes, there is evil in our world. It might not realistically be in the form of a giant lizard-man taking over New York city, like the movie, but it's there.

I believe that no matter where we come from, no matter our upbringing, no matter our culture, we have hope. We want to believe that in our time of need, help will come. Our help may come in the form of a friend, a family member,  or a stranger. Maybe it will come in the form of a song, a book or the Internet.

If perhaps it comes in the form of a spandex wearing web slinger, well that's ok too.



Wednesday, October 23, 2013

glorious fall

The world looks so glorious right now.

From my backyard to the west, I see this:

To the east I see this:
(I strategically edited out the neighbors blue pool slide, 'cause it kind of wrecks the view for me.)


All my favorite colors, as far as the eye can see!

While making dinner last night, out the window I spied my two youngest with our the leaf rakes. Every year, the first time the rakes come out, the kids are always excited to rake leaves. They drag the leaves into piles and jump in them and it all seems new and exciting. 






By next week however, when we are positively drowning in leaves and the raking becomes a mandatory chore, they will change their minds....

Oh well, at this point ignorance is bliss!

Tuesday, October 22, 2013

fire it up

Last summer, one of the work projects my kids worked on was digging a fire pit in our back yard.  It's in the back north east corner of the yard under two massive evergreen trees.  It's like a little woodsy nook in our yard, it even smells woodsy!

The fire pit isn't actually finished, but we decided to use it anyway last night just for fun.  The weather has been so gorgeous, and it was a cool night but not freezing.

I don't really know why I like the fire pit. I totally hate smelling like smoke and I made everyone take a shower when they came in. But there is something fun about it. My absolute favorite fire pit ever, is found at the beach house we vacation at once a year.  The warmth of the fire combined with the salty air and the waves crashing in the background is heaven, as far as I'm concerned.


The kids love it too. 

One thing I've learned about boys over the years is that they're all pyromaniacs.


Thursday, October 17, 2013

Tuesday, October 15, 2013

two years

Today is the two year anniversary of the day that, well, everything changed.

Several months ago, I wrote about it elsewhere, here is an excerpt:

----------------------------------------------------------
I lost my hands in October of 2011. I had been happily sleeping in on a Saturday morning. The sun was streaming in through my window, nudging me awake. I groggily stretched and noticed that my right hand was numb. Thinking I must have been sleeping on it, I fully expected the numbness to go away in a few minutes.

It didn’t.

Days went by and it was still oddly numb. One week later, I realized that not only was my hand numb, but my right foot and the whole right side of my body. I began feeling a strange sensation, like water trickling down my right side. I kept telling my husband, “I feel like I’m sweating profusely, but every time I check, there is nothing.”

The severity of the numbness in my hand progressed to pain. Within a few weeks both of my hands were in agony. My hands, which I had previously never given a second thought to, were useless because I could not stand to touch anything. My children and husband were doing the cooking, cleaning, and laundry. I sat at dinner one night, crying because I could not pick up the grilled cheese sandwich they had prepared. The texture of the grilled bread felt like stabbing fire.

It seemed like the ultimate cruel irony. I sew, I craft, I blog, I enjoy photography, I have seven kids and a husband. I lead the children's organization in my church. With useless hands, how could I do these things?

Several doctor visits and two MRI’s later, I received the diagnosis. Our phone rang, the caller ID indicating that it was my doctor. I sat down on the overstuffed chair in my bedroom, in the dim morning light of a grey day. My heart pumping madly with nervous energy, I answered the phone. “While there is not a definitive test for Multiple Sclerosis, all the signs show that you have it. There are lesions on your brain and on your spine. I can recommend a Neurologist who specializes in MS, if you would like. I’m really sorry.”

I’d like to be able to say I was up for this challenge from the start, but I wasn’t. The realization that life as I knew it was over, crippled me. Depression, something I had never before experienced, hit with a vengeance. With my husband at work and my children at school, I lay in bed for weeks, numb with grief and fear. My youngest daughter watched movies for hours on end while I barely functioned.

Thinking of my future was terrifying. How long before I would be in a wheelchair? When would I lose complete control of my bladder and other body functions? Would I lose the ability to speak? When would my mind lose the battle to the lesions dotting my brain?

I wallowed in depression and grief for most of two months. Then I decided that with the new year, I would start again.  I listened to Dieter F. Uchtdorf’s talk, “Forget Me Not,” over and over and over. His words soothed my troubled soul. “Sisters, wherever you are, whatever your circumstances may be, you are not forgotten. No matter how dark your days may seem, no matter how insignificant you may feel, no matter how overshadowed you think you may be, your Heavenly Father has not forgotten you. In fact, he loves you with an infinite love.”

I began to feel hope. The way I had always envisioned my future had been changed, but I still had my life. I had a loving husband and wonderful children. I had friends and neighbors who had served our family in countless ways. I remembered what I had for a time forgotten, that God knows me, loves me and watches over me.
-------------------------------------

Now with two years under my belt, it feels good to know I've made it this far. Physically, not much has changed. I have the same challenges, but not really any new ones.

I still wonder what the future holds, and it's still scary, but for now I feel a sense of pride knowing that I can do this.



Monday, October 14, 2013

a sad way to go

If I am found mugged and unconscious in a seedy back alley, know that my doctor, insurance and pharmacy are to be blamed.

They drove me to drink.

It all started a month ago when it became clear that I could no longer take Copaxone.  I called my doctor and started the process of applying to take Tecfidera.  After the paperwork was completed, my doctor assured me that it would take about one week, two weeks tops before the medicine arrived.

Now 38 days later, I still do not have my medicine.

I have made multiple phone calls, trying to expedite (ha) the process.

I call the pharmacy.  They say, "It's not us, it's your doctor."  I call my doctor, they say, "It's not us, it's your insurance."  I call the insurance, they say, "It's not us, it's the pharmacy." Repeat. Repeat. Repeat. Repeat. Repeat. Repeat.

I'm starting to feel desperate and perhaps, alarmingly angry.

I hate this process.

Let me clear this up with a list of other things that I hate to do:
#1- Slowly drive a rusty nail through my eye.
#2-Put a pulsing hornet's nest in my underwear.
#3-Swim with eels, play with sharks, and kiss an alligator.

Yet, I would do all these things together while riding a unicycle blindfolded* before I would willingly get on the phone again and deal with my doctor, insurance, and pharmacy.

I suppose I am going to have to talk to them again, 'cause yep, still no medicine, so the only logical next step is a drink of something hearty.

And yes, I'm not a drinker, and have never even had a sip** of something alcoholic, but these people are doing to drive me to drink.

I will go to the big city. I will look for a friendly guy staggering around holding a bottle in a brown paper bag. I will ask to join his tea party and probably before the liquid passes my lips I will pass out just from the smell, seeing how I'm not an actual drinker.  Then the guy will mug me and drag me to a dark alley to hide the evidence.

Where I will be found by a policeman and after he wakes me up, I will groggily gasp, "They made me do it."






*ok, fine. I'm exaggerating.
**I did once, unknowingly, enthusiastically (I was pregnant) eat cake that was soaked in liqueur. (I loved it.)




Friday, October 11, 2013

Screamer



Have you ever watched a movie and seen someone spontaneously scream out of fear? It's always seemed so fake to me. I always thought, "oh brother, no one really does that unless they're acting."

Turns out, I'm a screamer.  WHO KNEW?

Twice in my life, out of instant and complete fear, I've involuntarily screamed.

I suppose this means I would be a good actor, with my screaming ability so perfected.

(I would be a terrible actor.)

Example 1:

I was walking down a sidewalk in an upscale neighborhood in Cuenca, Ecuador. The wealthy in Ecuador always had large walls surrounding their homes, with entry gates, and occasionally with armed guards posted. They also seemed to have a love for exotic dogs.

Heading to an appointment, I was walking quickly with a friend and we were talking a mile a minute, as per usual. We could see that the house ahead of us had two large white fluffy dogs sleeping in the driveway, outside of the gates. We approached the house, still absorbed in our conversation and not paying any attention to the dogs. Dogs that looked similar to this:

Right as we passed the sleeping dogs, they jumped up and started barking their heads off at us.

I jumped and screamed one loud bloodcurdling cry of fear.

Then I laughed and laughed because this was the first time I had ever involuntarily screamed in my life and I didn't know I was a screamer.

Example 2:

About ten years after the Ecuador-scream-that-was-heard-around-the-world, I lived in a small house on a large piece of property.  We had a pasture and two cows, named (by my children) Harry Potter and Hermione.  All summer long, Harry and Hermione would eat anything green that grew in the pasture, but by October, the pasture was all dried up and we fed them oats twice a day.

One cold and frosty morning I went out to the pasture feed the cows. My father-in-law was visiting and he went out to watch. I opened the lid to the oat barrel and reached inside to get the scoop.  Right when I looked down, a mouse, inside the barrel, jumped up (with his fangs bared and his claws reaching for my throat) and I screamed.

Whoops, wrong mouse.

Yeah, yeah, this guy's mean cousin.

Ok, fine, it was just a little mouse and it only jumped up, scaring me. This time my father-in-law laughed and laughed. I did not laugh, as I was recovering from my heart attack.

And so now I know. I am a screamer. As humiliating as it is, I am a screamer.

I wonder what my next encounter with primal fear will be?

How about you? Are you a screamer?


Wednesday, October 9, 2013

fall=yay!


I feel sort of a mild panic attack coming on that winter is on it's way and before we know it, we'll be under 4 feet of snow and it will be 10* outside.

Do you ever get that feeling?

In order to enjoy a beautiful fall day yesterday, I went to the park for a picnic lunch with my youngest. When we left the house it seemed warm-ish, but by the time we stopped at the store for donuts and then went to the park, it was coldish.

Fortunately we had two winter coats in the car.



Note to self, quit buying donuts at the local market. They're just not that good. Drive an extra 2 miles and go to the donut store.  As I was eating my not good old fashioned, I thought fondly back to my college days when my roommate and I would stop at the food court and buy two old fashioned donuts, at least once a week. Now, those were delicious donuts.  

I don't think B's was that good either. After she ate all the frosting off, she was done.


Yeah, yeah, I know in theory that we need winter. Snow pack, water levels, drought, blah, blah, blah. But this CA girl is never giving up the thought that we have a miserable, cold, dark, grey winter.

Blech.

Can you be a snow bird when you're 41, and have 6 kids in school?

'Cause seriously, don't tempt me.



Let's sum this all up:

Fall=Yay!
Winter=Boo. Hiss.

Tuesday, October 8, 2013

carry on

I live in a small(ish) town.

Over the last 20 years it's population has probably quadrupled, but it still seems small town to me.  There are plenty of old timers who've lived here for forever. There are lots of new people like me. There are homes that were built by the people who settled this town, side by side with new homes. Every summer there is a parade and a rodeo and a festival in the park. It's a happy town that feels like a safe place to raise a family.

However, just over a month ago, one of our town police men was murdered while working his shift. Early in the morning, he came upon two transients, high on Meth, sitting in a car at the side of the road. At some point in their interaction, he was shot. He attempted to drive away while they continued to shoot. He died.

This tragic situation rocked our community.

This heart breaking event took place about two blocks from my home. A makeshift memorial has been set up at the spot where the officer died.  I drive by it almost daily and every single time I drive past it, I feel deep sorrow.

I didn't know the officer. Yet I think of his young wife and son, who are now living without him. Their lives have been changed forever.

I'm also aware of friends and neighbors who are hurting for one reason or another. I have stupid MS. My sister has stupid MS. My son has very little hearing ability in one of his ears.

All hard things.

A few days after the shooting, my husband and I were at Home Depot. We ran into some friends who are experiencing a really hard challenge. Yet there we all were at Home Depot buying things like light bulbs and paint. After we said our hellos and were headed back to our car, I had a moment where I looked around at all the people in the parking lot, scurrying to and fro and I thought to myself, "Every one of these people probably has something in their lives that is breaking their hearts. Yet, life goes on. We get up, we go to Home Depot, we carry on."

Sometimes though, it's hard to get up and get going.  One major side effect of MS is depression. Right after my diagnosis, I experience more dark days that I knew were possible. I didn't know if I would ever get out of bed again.  Miraculously, I managed to pull myself out of it. Once in a while I still have a blue day, but I usually blame it on PMS. (Ha!)

A man I greatly admire spoke about depression in a discourse over the weekend. His words offer hope and empathy. Go here to hear his kind words of comfort.

My wish for you, is that you will always be able to get up. To carry on. To know that however difficult it becomes, life is always a blessing.

(Dill from my garden.)


Thursday, October 3, 2013

what's black and white but mostly grey?



"I'm afraid I'll do a bad job," he told me with emotion in his voice. "And, I'm afraid I'll do a good job and then I'll have to do it forever."

My son, a soccer player, had just been asked to play goalie for his team.  A position he does not enjoy playing. A few years ago, while playing goalie, he was scrambling for the ball and ended up getting kicked in the head. Twice. He hasn't played that position since. But, his current coach, in all fairness, was giving each boy on the team the opportunity to play goalie, and it was my son's turn.

I can totally understand his quandary. Who wants to stand in a net covered box, waiting for a ball to come slamming into your body with a possible kick to the head to follow? (Not me.) Not to mention the pressure. During the game, passing and kicking the ball around is a team effort, but when the ball heads for the goal, the goalie is ultimately responsible for what happens.

He's just twelve years old but I thought his assessment of the situation was pretty insightful. No one wants to fail. No one wants to be forced to remain in an unhappy situation, even if it benefits others.

For the soccer game to succeed, each team needs a goalie, whether the goalies like it or not. So for my son, the situation is both good and bad.  Bad-because he doesn't want to do it, but good- because if he does it, he will benefit the team and possibly be a good goalie.

Good and bad, all mixed together.

This pretty much sums up how I feel about my Neurologist.

He is supposedly the best in my state. He's considered a MS specialist. He travels the world attending conferences and keeping up to date on the latest pertinent information.

Yet, he has zero personality, his office staff is highly inefficient, and any communication with them is an exercise in extreme frustration. I've been their patient for two years now and no one knows who I am. I've left his office on more than one occasion vowing to never return.  Yet, I keep going back.

Good and bad, all mixed together.

I suppose that life is like that.  Opportunities come along and they're not always as clear cut as we would like. Things aren't always black and white, most of the time there is a lot of grey.

And that's what keeps life interesting.

Like it or not.






Monday, September 30, 2013

laundry quandry




Today, Monday, is my laundry day. (Ugh)

Dirty laundry is the bane of my existence.

There are eight people in my house, and eight people make a lot of dirty laundry. Dirty laundry that needs to be washed on a regular basis, namely-weekly.

I've been campaigning for years that we should all move to a nudist colony 'cause then my life would be laundry free and so much easier, but my husband says, "No thanks." (party pooper)

So I carry on with my eternalaggravating, horrible, weekly laundry chore. I learned a while ago that I can not do anything on laundry day, BUT laundry.  I can't go shopping, I can't cook anything fancy, I can only do laundry or I will never get it all done in one day and it will stretch out for days on end like a case of particularly vicious stretch marks (or for example, this really long, run on sentence).

You may wonder why I don't have my children do their own laundry? One simple reason really, they don't have enough dirty clothes each to justify each of them running loads separately. Knowing my boys like I do, they would consider three pairs of underwear a load. And can you imagine how many loads would run every week if all six kids washed their clothes separately? (They do however, all take turns doing everyone's laundry all summer long when they are off school.)

This morning, right at 6am, I had everyone gather their dirty clothes and they sorted it into the appropriate baskets (whites, darks, mediums, towels). I was grabbing a load of darks when I noticed in one of the baskets what appeared to be a book.

Lest this confuses you, as it did me, let me clarify: I don't wash hardbound copies of Harry Potter. I wash shirts, pj's, jeans, underwear, socks, sports clothes of all kinds, and lots of other clothing type things, but I do NOT wash books.

I do however have children who, while cleaning their rooms, (mistakenly) think their dirty clothes baskets are some kind of magical catch-all for anything and everything. A soccer cleat with no partner? Drop it in the dirty clothes basket.  A Nerf gun? Drop it in the dirty clothes basket. Old homework papers? Dirty clothes basket. A Harry Potter book? Dirty clothes basket (obviously).




This my friends, is where I draw the line. The children at fault admitted to the misdeed.  One child admitted to placing the book in the basket (really?), the other child was at fault for sorting it into today's laundry piles.

And I am happy to report that my laundry loads will be lighter today. Not just one Harry Potter book lighter but all the offender's laundry lighter. They get to do their own! (Breaking my own rule.)

Parenthood. It ain't for sissies.


And for that matter, neither is laundry for eight.








Friday, September 27, 2013

books glorious books!


Since I seem to be writing a lot about reading this week, here are the best books I've read this year, in no particular order.

I love Gary D. Schmidt and read lots of his books over the summer. He always writes in the voice of a young boy, and I don't know if I think this is hilarious because my life is surrounded with teen/tween/young boys, or what?



Other Gary D Schmidt's that I recommend are Lizzie Bright and the Buckminster BoyTrouble (FYI- PG-13), and First Boy. I started What Came From the Stars, but it's very science fiction-y and I didn't like it.
Except for What Came From the Stars, I give all the books 4 out of 4 stars.

Oh my, Leif Enger, how I love your books!
I normally read at lightening pace, but with these books, I make a conscious effort to slow down and relish the gorgeous words.
Highly recommended.
4 stars.



I didn't expect to like this book.  Her blog is really fluffy and cutesy and I imagined her book would be the same.  I decided to try it out, mainly out of curiosity. I'm happy to say it was good. I will tell you though that it's in three parts and the second part deals with her plane crash, etc. and I sobbed my eyes out. It was really painful. But sometimes I like a good cry, it's cathartic.
3 stars.


Truthfully, it's been a while since I've read this, and I'm a little fuzzy on the details.  I do remember liking it, but it's probably PG-13, since one of the themes is choir boys and how they are "made" to stay sopranos..... ahem.
3.5 stars

 Just read this last week.  So very good and heartbreaking and redeeming all at once. I know a book is good when I think about it long after I put it down, and this is one of those.  Plus, I really love the artwork on the cover. I stopped several times while reading to admire it. Highly recommended, but PG-13, and Mom (hi, mom!) I don't think you'll like it.....
4 stars

Just finished this yesterday.  A good read, not the best thing I've ever read, but I would recommend it.  The story of a family who lives in Cambodia's largest municipal dump (!) and their fight for survival. (Based on a true story.)
3 stars

Read this with my book group, and I found it sad but good. I think often we don't realize, living in the USA that many, many people and even kids are living day to day, hour by hour and they don't know when or if the next meal will come.
3 stars.


Normally, I don't read books that make me think too hard. I'm much more of a read for pleasure type of gal. But I kept hearing about Quiet - The Power of Introverts in a World That Can't Stop Talking by Susan Cain, so I decided to give it a try and I really loved it. It's very interesting. There is no doubt in my mind that I'm an introvert and my husband is probably even more so.  If you are an introvert or you're related to one, I recommend this book!
3.5 stars

Finally, Wonder by R.J. Palacio. A must read for any kid going into Junior High and an interesting read for adults too. It will make you stop and think about your personal approach to dealing with people that look different.
3.5 stars

Well, that's it for today.
 But never fear, I picked up 5 new books from the library yesterday!

Wednesday, September 25, 2013

to cheat or not to cheat, that is the question....

Fact #1: I'm an avid reader. There is never a time that I'm not engrossed in a book. In fact, I usually have a stack of about 4 books waiting to be read.

Fact #2: I'm a cheater.

Well, let me clarify that....

I don't cheat at games. I don't cheat on my husband. I don't even speed while driving (ahem, mostly).

But I always, always read the last page of whatever book I'm reading, after I'm about 1/3 of the way into the book. I don't start a book knowing that I will cheat, but I will be reading happily along when all of a sudden, I have to know what the ending will be like.

I don't like surprises. I want to know if the book is going to end happy or sad. I want to brace myself and be prepared if it's going to be sad.

My sister, who won't even read the inside jacket or the back of the book to get the summary, because she doesn't want to spoil the story, obviously thinks this is blasphemy(!).

Sometimes there is just a short paragraph on the last page, and sometimes the page is full. But I can usually tell what the "feel" is, by reading whatever is there. Most of the time, reading the last page doesn't give away the ending of the story, but it just lets me know whether to expect "happy" or "sad".

Is this cheating?  Probably, but I really don't care, it's a system that works for me.

This habit of mine, is just one of the many reasons MS is frustrating to me. I want to know the end of the story! Yes, I realize no one knows the end of their life story. But when you add MS to the equation, it changes the normal life story. Now that I know what I know, I'm pretty sure the end of my story will involve harder things than the average healthy person.

What I really need is a crystal ball!






  

Monday, September 23, 2013

game time (or not)

We are not a household of gamers. We do not own a gaming system or video games or DS's or Gameboys or whatever is the latest toy. Do our four boys wish we had these toys? Yes, they do. But my husband and I think they are a waste of time that could be better spent playing outside, or doing sports or whatever.



This article, however is really interesting to me. Not interesting enough to actually go buy the game (sorry, boys) but definitely food for thought.

How about you?  Do you game? Do you think it could help with MS troubles?


Friday, September 20, 2013

C is for Copaxone- the follow up

I'm done with Copaxone.

I've taken it for 21 months but my last shot was a week ago. It seems as if Copaxone is trying to kill me, and frankly, I rather die via the slow excruciating MS method.

One of the lesser known side effects of Copaxone is: Some patients report a short term reaction right after injecting Copaxone. This reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing.

In other words, you feel like possibly you are going to die from a heart attack. I've experienced this side effect five times total in the last 21 months, with 2 of the attacks in the last two weeks. And just to make it extra fun, each time the attack happens, it's worse than the last time. One part of the side effect that they don't even mention on their web site, is that about half an hour after your real fake heart attack, sometimes (not always) the chills will hit like you have an instant case of the Avian-Portuguese-Zombie flu. I was shaking so bad it woke my husband up. 

By the next morning I felt like I'd been hit by a truck. On most days I don't feel that great in the morning, so having a real fake heart attack the night before isn't really helpful.

Let's recall that Copaxone is a daily injection.......now who wouldn't want to have a real fake heart attack followed by the Avain-Portuguese-Zombie flu, EVERY SINGLE DAY!

I was already in the process of switching over to Tecfidera when my last attack hit. But starting a new medicine involves lots of paperwork, phone calls, and time. My doctor (who I don't really like, but that's another story for another day) seems to think I can just stop the Copaxone and wait for the Tecfidera to come. Which is fine by me. The thought of popping another shot in, and waiting for the next real fake heart attack is entirely unappealing.

Bring on Tecfidera!  Pills, no injections. Side effects could possibly be a flushed (red) face and GI troubles.  So I will look like I've spent too much time at the beach and I'll need a bathroom near at all times. But! No real fake heart attacks.

Maybe I should go back to school and become a mega-brain scientist who invents the next great MS drug. It will be taken in the form of chocolate bar to be eaten once daily. It will magically melt in your mouth. The side effects will be hair loss on your legs (for women) or your face (for men), so you don't have to shave any more. Another side effect will be instant improvement in your skin, no zits or wrinkles.  The final side effect will be minty fresh breath 24/7. Now, who wouldn't want that!

A new miracle drug.  I'll get right on it.

Thursday, September 19, 2013

Michael J

By the time I was 14, I was 5'11" tall. I towered over everyone I knew. I was always known as the tall girl.  When friends signed my  yearbook at the end of the school year, their entries always had some form of "you're so tall!," as if I didn't know this and needed people to point it out to me.

Back then my dad, a regular giant himself, at 6'5" loved to tease me about my love for Michael J Fox. (Google tells me that Michael J. Fox is 5'4".) "How can you love a guy that's that short!," he would laugh. But I didn't care. I had started my love affair while watching Family Ties on tv, and then when Michael J. Fox starred in Back to the Future the deal was sealed. He was smart, funny, sarcastic and cute.  Who cared that he was 7 inches shorter than me?

Fast forward time to when I was 39 and had received my diagnosis of MS. It had been a few months and I was still wallowing in despair. In the library one day, I happened to come across Michael J Fox's memoir, Lucky Man. I knew that it dealt with his Parkinson's diagnosis and it featured my favorite short guy, so I brought it home.

I enjoyed the book, and I felt it dealt very truthfully with the realities of receiving a life changing diagnosis.  He treated the subject with self deprecating humor and charm. In a small way, it reminded me that people everywhere are dealing with things that they didn't plan for.


This morning while eating my breakfast I read the above article in Good Housekeeping magazine, a small excerpt is found here.  He is still the same funny, charming guy that he's ever been. He hasn't allowed Parkinson's to define himself. He carries on, he lives his life, he works to find a cure. He is happy. In the article he talks about "joy". He says, "That's really the emotion I'm most at home in. Not that I can't experience sadness or desire or whatever. I'm just most at home in joy."

I like it.

The article closes with: "Look at the choices you have, not the choices that have been taken away from you. In them, there are whole worlds of strength and new ways to look at things."

Wise, wise words from my favorite short guy.