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.