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: Harry. 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.
(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!
-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.
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.
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.
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.
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.
(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....