We Could Have Had It All: Aubagio

After combing through Aubagio’s website I came away with nothing. I called Genzyme, the drug company that makes Aubagio, 3 TIMES. I got Tim on the “help” line. After listening to my questions about the blood brain barrier (BBB), and then the molecular size, in Daltons, of the particles that make up Aubagio,Tim on the help line couldn’t get enough HELP to help me!

I refused to give up. The best Tim could do was refer me over and over again back to my physician. THAT was where I had started! All I really needed was a Genzyme scientist or research specialist! Why didn’t they have somebody like THAT on call!?

My confusion: I have one world class Neurologist who is “for” Aubagio and one who is not. The one who is not only gave a vague uncertainty of the blood brain barrier as his reason why. Now the other neurologist is not returning my calls with a prescription for Aubagio or an explanation as to why he’s had a change of heart.
Then, the Wall Street Journal prints an article stating that doctors are suggesting patients not rush to the new medicine.
http://online.wsj.com/article/SB10001424127887324595904578123420502281086.html

So…I’m on my own with my magnifying glass and my medical journals! What I find is that Aubagio, like the other disease modifying drugs, reduces relapses and such, but I question whether or not it compromises the BBB, and if so, how it affects the MS brain, its many lesions and their various changing locations within the brain? The unanswered questions and lack of understanding has made me decide to continue my Rebif regiment. I’ll continue to inject until Aubagio has been on the market longer. How long? I don’t know.

What treatments have you found to work best for you?
What alternative or holistic treatments would you suggest?

MS and Tragedy: Connecticut School Shooting and Katrina

This has got to be the saddest day in our country, with the exception maybe of 9/11. Today is the worst mass school shooting in our history. How can I write about anything on such a dark day? I turn the radio off, get my notebook and drive to my favorite Cafe’. As soon as I walk in, who catches my eye but Stitches the Clown? I try to walk by with pleasantries, “You look GREAT, I bet you’re gonna make somebody really happy” I say. Stitches response is, “Why not you?” I am stumped, speechless. He comes right over and slaps a smiley sticker on my sweater and gives me a hug. What’s a good clown without a bag of goodies? I get a little bitty notebook, a pencil and a super cool star shaped eraser. As I’m saying “Thank you,” up walks his wife, Band-Aid. I can’t leave now, I’d LOVE to take their picture for my Blog. They’ve turned my day around already.

Band-Aid tells me that Stitches has been married three times. Thinking I have a great joke I say, “What happened Stitches, you couldn’t hold ‘em together?” (Laughter should be here) Stitches says, “No, my second wife died from Cancer”. That was THE END of my career as a Clown. Band-Aid says, “MY husband died of an aneurysm.” Stitches finishes with a smile, “Went QUICK…no suffering!”

Band-Aid tells me, without a smile, “Ya know Stitches had Cancer two years ago. Actually he still does, the doctors say it’s amazing how low his numbers have dropped. It’s Leukemia.”
Just as I think of leaving, the place is flooded with kids! Really, really happy kids. One little girl runs up and hugs another just because they’re so happy to see each other. You would never know they went to the same school and were in the same class. I overhear one little girl say with glee, “I’m soooo hyper”. This must be the same as “happy” in my day. I say to one of the girls “Is your mom here and will you please take me to her?” I tell the mom that I have MS as I hold my cane up a little. I explain that I am writing for my blog about MS and I like to keep it happy and uplifting, but after today’s shooting in Connecticut …I start crying (can you believe it!) somewhere around happy and uplifting! I tell her that I’d love to take a picture of the girls for my post today because they are so happy and full of life. She quickly rounds up the other parents for permission and VOILA ! I have my picture.

This is GREAT. I feel like I work for the newspaper again, I start looking around for “that” picture. You know the one that capture’s all things. But I don’t work for the newspaper anymore and my MS soon reminds me. I sit down, still I am happy.

When I learn of tragedy now, it must be filtered.
The news cannot be watched.
I get the number of dead, city and state, from my husband. Was it a Congress Woman or a teenager? Was it in a theater or an elementary school?
NPR is not my friend.

Katrina hit with a vengeance,
I watched CNN for days, my husband tried to pull me away, but couldn’t.
I saw a body float down the street.
I saw a man push his dead mother in a wheelchair.
There were people on rooftops screaming for help.
I was looking for my brother.

When new tragedy strikes, the feeling in my stomach is exactly the same; the hole in my heart just gets bigger. My MS is always an issue; the stress is too dangerous of a risk. I turn CNN off, and I am happy to meet Dr. Band-Aid and Dr. Stitches.

“The last time I saw my brother one month before Hurricane Katrina”

Tell Me What You Think:
Have you or a loved one been affected by a natural disaster?
If you could only save one thing when your home burned down (hypothetically speaking), what would it be and why?

Model credit to my happy little helpers:Emily, Maddie, Allison, and Carly.

Part 1:MS and Genetics“A Conversation with my Daughter”

Part 1: MS and Genetics

“A Conversation with my Daughter”
We were talking at the dinner table, my daughter and I when she said, “I think I’m going to have MS when I grow up.” Just like you might say, “Pass the salt.” What happened in my brain was akin to the World Trade Center being hit. I looked into her eyes for some hint of joking, there was none. I asked,” Honey, why do you say that?” Her response,”because I’ve had Optic Neuritis” That’s it! There goes the second tower and the fucking Pentagon! Who PUT such trash into my baby’s mouth?! I NEVER taught her those words! Why are they there?

Part 2: MS and Genetics

Part 2: MS and Genetics
“A Conversation with Myself”
It’s crumbling, right here, right now, right before my eyes. This wall of denial I’ve taken 20 years to build to protect us, just like that… gone. She sat there, my baby, vulnerable and frightened, looking at me.
In that moment I was free from all fear. It was liberating, as though fear had been a monkey on my back and now it was gone. I sat up taller, chest further out…why? I knew instantly that from hiding behind my denial…not facing the fear; I was left weakened and controlled by it. Now, no longer able to use denial as a cover, I became empowered, and yes… my baby was watching me. So FUCK YOU MS! Yeah you’re bigger than me and you present LOTS of challenges, but with each one you give me another opportunity to show my baby strength, courage, dignity, grace and humility. Just a few of the things my mother taught me.
So, no MS, not fuck you…thank you (in a twisted sort of way).

Part 3: MS and Genetics “A Conversation with You”

I posed a question in an MS forum that I frequent, “Would you like more information about MS and Genetics posted on my blog?” and the answer was a resounding, yes! There were 73 comments in total but the one that ultimately convinced me to post this was from a young woman who is 29, has MS and because of the uncertainty in regards to the Genetic research, is struggling with whether or not to have children.

I can only say: I am so sorry for your angst. I did not have the time to agonize over MS or genetics as one child was already here and I sat pregnant with the other when the diagnosis was given. I am grateful for that…just as I am grateful for being told that same day, that MS carried no threat to my children genetically.

Many years have passed since my diagnosis and many things have changed. There were no drugs available then. I had to be put on a waiting list for the first disease modifying drug that was being approved. Now there are several disease modifying drugs to choose from. And with just a little faltering, I have been on one of them the entire time. As a parent (and a partner in this with my husband) I felt a huge responsibility to do “my part” to fight this thing with all that was available to me. To keep it at bay for as long as possible, preserving my nervous system until something was discovered! Now there is stem cell research, and just as I am truly beginning to tire of the injections, oral medications are becoming available. There is much to be hopeful for.

That baby, the one with all of my MS tainted genes, got my good ones too, and her Dad’s as well. Be very selective when you chose the Dad! He could bring genes a lot worse than MS. So far she’s been a girl scout, an Honor student and a Drum Major, now she’s in college. When I start to walk “drunk” she’s at my side in seconds holding my hand to steady me and we always laugh.  Imagine that, my teenage daughter holding my hand…in public!

Yes…I am sorry for your angst, but I am happy for your out look. Your unborn baby’s future is bright.

Maybe she’ll even hold your hand.

 

 

 

PART 1: MS and Three Drunk Guys, “There Are Noises in my Laundry Room”

— Nov. 18, 2012

My son, Kyle, is a handsome, young bartender living “The Life”. Moved out. Single fellow. Nice car. Nice clothes — and bills…agh!!! The minute his sister goes away to college, he moves back home. Me? I couldn’t be happier! I didn’t know how much I would miss him OR worry about him until he’d gone.

Kyle never brings anybody home — EVER. It’s like we’ve got cooties. So when he sent me a text at 2 a.m. asking, “Mom, can I bring three friends home?” I was ready to put out punch and cookies! But, I just said, “Sure. You know your Dad’s schedule so keep it down, please.”

I awoke at 7:00 a.m. — usual — husband’s gone to work — usual — bumps downstairs in my laundry room…UNusual. I look down the stairs, start to go — then I stop. Someone is in the guest bathroom in the hall. OH! Kyle has company and I have on PJ’s!! I run back up. “Kyle!” I call out. He appears. “Yeah Mom?” I ask “Is everything OK?” He looks up at me and I know something’s “off”. He looks confused, bewildered, whatever it is, I’ve never seen “that” expression before. Whatever it is, I’m glad he’s home. His response —  “Ugh…yeah, I’m figuring that out now.” “Ok Honey.” I turn and walk away.

YESSS!! I’ve finally learned! I’ve got it! He can handle it, if I just LET him. The LESS I say, help, and do — the better! As I bask in the glow of enlightened parenthood, Kyle disappears — and I wait. I can’t walk away, but I can’t help either — so I wait. I am still his Mom. I’ll always wait. For what, you ask? I don’t know exactly. I just wait. Maybe he’ll say, “Mom, will you help?” — but he doesn’t, so I turn and go to my room. I walk away.

Just then “it” comes up the stairs; an odd, unidentifiable sound.  What the hell IS it? Where the hell is it coming from?! I’m puzzled. The “it” that I hear is definitely WATER. I go onto the landing and look over the banister. Clearly, there is no one in the bathroom downstairs.  To add to the strangeness, this water sound is loud and echoing; like it’s in a tunnel, or maybe that of a waterfall!

Kyle is capable of handling whatever this is… remember? Walk away — NOW!

(10 minutes later)

In walks Kyle.

Kyle: “Mom, do you have any towels that you don’t want?”

Me: “We can look, honey.”

Kyle: “The beach towels aren’t real absorbent.”

Me: “Well, honey, all of my other towels are good. What do you want them for?”

Kyle explains

Me: “OMG!!!”

PART 2…TOMORROW

 

Part 2: MS and Three Drunk Guys,”He Thought It Was The WHAT?”

— Five hours earlier

Kyle and his buddies are leaving the bar and they have been drinking. Kyle, who had been tending the bar, was the designated driver, as usual. Going to the car they notice Todd trying to put his keys in his car door, but he can’t. The keys keep falling on the ground, again and again. They know Todd goes to school an hour away and that’s where he’s planning to go. This is clearly not a good idea, so they gather him up and add him to the group in Kyle’s car.

They get to our house. Kyle hands out bottles of water, blankets, and pillows. My husband counts three bodies — each asleep on the floor as he goes to work at 5:20 a.m.  Kyle, semi-conscious in the chair, assures his Dad that all is well and promptly goes back to sleep.

(7:00 a.m. or slightly after)

Kyle’s friend, Todd, stumbles into the laundry room and Kyle tells him, “No, Man — that’s not the bathroom — it’s on the other side of the kitchen.” Meanwhile, Kyle comes to the bottom of the stairs to answer my call. You see, I’ve been awakened around 7:00 a.m. by the unusual bumping sounds coming from my laundry room.

It is in that moment — the moment that Kyle comes to answer me at the bottom of the stairs, that Todd goes back into the laundry room, puts a handful of Bounce dryer sheets into the dryer for freshness, and proceeds to pee into our Maytag dryer!!

When Kyle tells me what has happened, I HUG him and tell him everything is going to be fine! My default in a crisis situation is a hug FIRST — then a quick reminder that it’s not the end of the world… yet. I tell him to GOOGLE it and do whatever it says to clean it up. This just can’t be the first time this has happened! I’ll bet you a million bucks we’ll find that some drunken frat boy somewhere has peed in a dryer before!

PART 3: REALLY SOON!

Part 3: MS and Three Drunk Guys, “This Contract States”

– 9:00 A.M.

Kyle has to wake Todd and tell him what has happened. Meanwhile, I’ve drawn up a quick contract in Grandma’s Holiday recipe book in the kitchen. (It was the only thing on the counter!) It says that Todd has urinated in Estizer Smith’s dryer on blah blah date, at blah blah time, on blah blah street. It states that Todd is fully responsible for repair OR replacement of said dryer, if needed, to be determined by ME, Estizer Smith. It is to be signed by Todd, with not only his address and phone number, but that of his parents, as well. I know he’s an adult, but parents still carry a lot of weight!

The other two are up now and come into the kitchen as if to leave, but I ask them to stay. I want witnesses outside of the family that Todd understands my contract. Kyle pulls a chair up in front of the sofa where Todd is sitting. The family room is dim; they’re sitting knee to knee. Kyle is speaking in a low voice.

Todd drops his head into his hands. He can’t believe it.

When they walk into the kitchen together, it’s actually the first time I’ve seen Todd. He looks younger than the others, and very sweet. When Kyle introduces us, Todd looks me right in the eye.

Todd: “I’m so, so sorry. I don’t know how this happened but, I am really so sorry that I did this.”

Me: “Okay, Todd.”

Todd: “I’m soo, sorry. Really!”

Me: “Okay Todd, I believe you. I do. It’s o.k. But, this is important to me. I want you to read this contract and be sure that you understand it before you sign it.”

Todd: “I totally understand it and it’s all my responsibility. Um, is there any way my parents can… um, NOT know about this?”

Me: “Todd, the most important thing here is that no one was hurt. This was just my dryer but, Todd, you were soo unaware of what you were doing — can you imagine if you had been driving? You would have been very dangerous. This could have been so much worse. You could have died, other people could have died. This could have been our worse nightmare come to life. Luckily for you, and a lot of other people on the road, you’ve got really good friends who stopped you and brought you here! What if you had gone to pee in my washer instead and the top closed on you… OUCH!” (Shit, did I just giggle? I’m trying my best to hold it together here, but the kid just peed in my dryer and it’s hilarious. He’s so pitiful, he thinks it’s the end of the world, and it’s not!  Ok, ok, be stern!)

Me: (with my straightest school teacher/mom face) “Todd, NEVER again, right?”

Todd: “Absolutely not! No — not ever!”

Silence. Point made. 

Kids leaving together, call out in unison: “So sorry we had to meet under these circumstances, Mrs. Smith.”

Me: “Oh, it’s okay, you can come back…anytime! As a matter of fact, (giggling full blown now but trying to cover with a piece of paper), you can come ThanksGIVING! “

(Turning to look at the perpetrator and still giggling)

Me: “Hey, Todd! The Bounce was a nice touch!!”

New MS Drug –Aubagio…I’ll have to wait even longer!

The Wicked Wizard (Neurologist) of the East (Philadelphia) Instructed his army of flying monkeys to kidnap me and take away my Aubagio dreams…he told me NO AUBAGIO!

Wicked Wizard: “I don’t care what the wizard of Chicago told you, I will wait a YEAR before I prescribe this new MS drug. If you insist, let the Chicago Wizard give it to you! I will not argue.”

Me: (steaming) “I have been taking these shots for TWENTY YEARS, (in my head-you *#@%^) and Aubagio has successfully been used on HUMANS for the last THIRTY YEARS for rheumatoid arthritis, meaning it’s been watched for THIRTY YEARS ALREADY, what more do you want!?”

Wicked Wizard: “I will not argue.”

Flying Monkey: (Associate Doctor, Both hands on chest referring to self) “You know WEeee are the MS specialist.”

Me: “I will not argue either, but I will wait for an explanation that I understand.”

Wizard: “For 30 years they saw how this medicine affected the joints in people, NOT how it affected their brain, and MS affects the brain.”

Me: (still angry) “Deaths are not an issue, right? So, what’s the problem?”

Wizard: “The Blood Brain Barrier! That is the problem!”

Now, the nice little Monkeys make it their business to try to explain to me the Blood, Brain, Barrier. The Wizard, gruffly asks if some internet information would suffice? By now, my eyes have glazed over with all of the medical jargon, but buried underneath all those words I’m still alive. Deep within my brain, I have heard this term. Either, I have taught it, or learned it, but at some point it has been in my academic life! That tiny, tiny sliver of light allows me to laugh at the Wicked Wizard as he and his Flying Monkeys leave the room. I WILL SURVIVE(Donna Summers) I’ll Research the Blood Brain Barrier!

Has anyone else been turned down by their Dr. for Aubagio? How do you feel about it?

Today I met Mary

Mary’s Story
I’ve spotted my table for the day and put my things down but I’m much more interested in what the lady has at the table next to me. I lean in on top of her an say “hmm, Positive Discipline, I think that’s great! I’m a huge believer in all things positive especially when it comes to discipline. I used to be a school teacher and I’ve raised two kids and I’ve used it in lots of different ways.(all in one breath) Do you mind me asking who you’re getting these books for?” Her name is Mary, when she starts to talk I ask, “Do you mind if I sit down?”… I have a friend for life.
I was in my favorite book store and cafe. Coming here is one of the ways I fight depression and its one surefire defense against isolation. I always talk to strangers, I can’t help it. And if there are no suitable strangers, I just visit with my friends the “Young Barristas” and write.
As it turns out, Mary’s daughter has been with a man for only two years, recently marrying him. She has a son, eight years old, and this man (now the stepfather) mistreats her son, in the name of discipline. This is all according to other family members (Mary’s brother). Mary’s never witnessed it herself, and this man is who the books are for.
WHOA! Mary…unless you want to be an EX mother in law over night, I wouldn’t do that if I were you. Clearly, with Mary and I being the instant best-friends that we are, she confides in me and I counsel her. She tells me all about him, and he doesn’t sound like a very nice guy at all. (The voice in my head says…”okay spit it out already, he sounds abusive!”) I share with Mary (I’m sure it seems quite random) that I had been in an abusive relationship when I was young. From what she has told me, this guy has shown many of the warning signs of an abuser already. I shared with her how important my families support was in me finally being able to end that relationship. Family and a good therapist! Never stop being a listening, loving, ear and KEEP the therapy discussion on the table. At some point she will hear you.
Mary’s daughter has not told her that her new husband is abusive. Mary never told me that her son-in-law was abusing her daughter; I just got a bad feeling in my stomach about him. When Mary got up to leave she hugged me and kissed me on the cheek.