Annette Funicello

Many years ago, I watched a Lifetime network type show about Annette Funicello and how she had multiple sclerosis. I clearly remember thinking, "One day I'm going to have that disease." Yes, you might think I'm crazy. But, Lord knows my parents remember me bugging them at the time about it. 

I don't exactly believe it was precognition or anything mystical. Maybe just for that moment I had a glimpse at my strange DNA or whatever the catalyst for MS is that was floating around in my body. But, I remember that moment. All of these years later, I was diagnosed and the day I was told it was MS I thought, "Of course I was right." I am right a lot.

Clinically, I have a lot of damage. Physically, I deal with it very well. I think that is what happens when you have kids. And, kids with special needs. I don't ever really feel like I have a choice. I hate my medication. I make no secret of that! It sucks and it steals my time with its side effects. Of course, it gives me time, too. 

What is hard to explain is that I have been on every medication approved for MS. They don't work. That also sheds light on the course of MS that I have. The one medication worked, but I'm allergic. allergic allergic allergic There is one oral medication that I cannot take due to heart issues. So, I've been on every approved medication and off-label available. And, then - IVig. 

So, BG 12 (now named Tecfidera). The oral medication with no side effects (more or less, they say) that I have been waiting to take for a long time. Over a year. It was released last Wednesday. Yippeeeeeeeeeeeee I got an email from my neurologist's medical assistant to come in and she even called to make the appointment so we could "talk about" Tecfidera.

Sometimes, I wonder about myself. I just took it to mean that I was starting the medication. I am so darned special that my neuro called me in to get going right away. I am special. 

I got up, got dressed, actually grabbed my kindle to snap a photo of myself signing the paper to get started (it is that easy!!!), and ran to my appointment. I should have known better. But, I didn't. The NP saw me first and told me that they had reviewed my records thoroughly and were not going to start me on the new med. I've always had a progressive pattern of MS, so it is what it is. I am ambulatory on IVig and the risk of stopping does not outweigh the benefit of not having to suffer through this shitty medication. 

So, I left. I stopped and told my my mom. She knew I had been waiting for this a long time. 

I'm not going to say I'm not upset. It is just the way medication is, though. Imperfect. I feel sort of confused with my feelings because I had put way too much hope into this medication, and now it is just gone. In every way these last years have been one disappointment after another when it comes to treating MS.

The only thing I know is that it is sad that Annette Funicello died. MS is not a fatal disease, especially with disease modifying drugs. But, for me - yesterday was sad. I have little hope of a new drug coming out anytime soon. And, I could really relate to Annette Funicello and she passed. Godspeed, Annette the Mouseketeer.

The Appointment

All of those times that I said I wouldn't care if Boy#1 had seizures or not - just as long as I knew something! - I was lying.

I was hoping for seizures.

I know that is screwed up, but seizures can be treated. Maybe not fully controlled, I don't know. But, treatable. Tangible.

I don't deal well with these vague diseases that have no effective treatment.

So, the doctor and I now use the "S" word. It is what it is. It is Special, though. There is no paradigm for treatment. No foreseeable outcome. I don't know of anyone like him, so it is just special. Unique. One of a kind.

The Clozaril makes him a lot better. But, it doesn't seem to reach through to these catatonic episodes. Which are awful. So very hard to watch and to try to stop. 

The Episodes are making me so tired, too. Because I feel powerless. That has to be the worst feeling for a parent. And, I get angry. Because it is draining me. 

So, once again... It is me, the shrink, and an arsenal of medication VS the S word!!!

Progressive

This is my modified turn FB red profile picture.

This "turn Facebook red" idea has actually made me feel funny. And, strangely left out. I have no idea if I will be able to articulate these thoughts. It is bothering me, so I'll try. The idea of marriage equality is considered progressive. Which boggles my mind, but it is what it is.

pro·gres·sive   

/prəˈgresiv/

Adj: 1. Moving forward; advancing
       2. Proceeding in steps; continuing steadily by increments
       3.  Pathology Tending to become more severe or wider in scope

Noun:  A person who actively favors or strives for progress toward better conditions, as in society or government.

Those are the parts of the definition of the word progressive that apply to my life. I definitely favor better lives for all of society. And, equality. Love. Prosperity. Fairness. Those are my favorite things for people to have access to. Of course, many people do not. I am not an activist. I feel sort of silly even turning my profile picture red. The only things I can say I am actively doing are not eating at Chick-fil-a and trying to raise my kids to be decent. The only thing you can really count on happening is no Chick-fil-a.

If I had time - I would be an activist for children with special needs. Specifically, mentally ill children. But, shit. The great divide that exists between people who could actually make a difference is huge. Maddeningly. So, I find myself trying to help out when I can and really just not doing anything. I cringe to even say this, but I have to survive getting Boy#1 to... Well, older than he is now.

But, I find myself so jealous! I want a big unified organization! I want people to support my cause. I want for people to change their profile picture for my kids! Dammit.

Of course, thinking about all of that brings me to the ways the adjective form of progressive affects me. And, Boy#1. 

Sometimes I try to figure out exactly how progressive MS is affecting me. Aside from the fact that none of the FDA approved medications work. (except Novantrone. I am not approved to take that drug, so I am blissfully unaware of its possible benefits) I'm not sure anyone can really understand where that leaves me. I usually cannot explain what it means. Then, I saw the words "master swim class". And, I realized what progressive means. 2 years ago (or so) I took master swim. I loved it and actually could swim quite well and for a very long time. I was able to share lanes and circle swim and keep pace. Then, I had a relapse. One leg just wouldn't work. So, it was too frustrating and actually impossible to participate. I was supposed to go to physical therapy. I didn't. All the same, I wouldn't be in master swim class today no matter what. That is progressive.

I have fallen twice in the last 2 days. Hard. I landed on my arm really strangely. The Father thought it was broken because I couldn't push down firmly with my fingers. Then, I realized - I just can't push down with my hands. I fell again and it just hurt. I can't keep falling. My legs are just giving.

That leaves me with Cellcept. Which I haven't started even though I just have let anyone who might think about it just think I did start taking it. I haven't been! Which I don't think any of my family reads this (i don't care, i babble when talking anyway), so they'll still be unaware. However, I'm getting my teeth fixed. Onward, ho!

Then Boy#1 also has a chronic progressive illness that I try to mange. Not easy. I don't even know if one single thing I am doing right now is useful.

That is my whole problem! I want to have enough energy to be active to be an activist to be progressive. I have progressive MS that is causing my health to progressively worsen. How can this be??? I feel sidelined. I want to be me, but activist me. I don't want to just write a silly blog and change a picture or two. Lame-o.

He's Just Weird

Boy#1's EEG was normal. I figured it would be. Staring spells and awful episodes were caught and I noted the time, and there are just no disturbances. 

This is great. I guess. I mean, I don't really want to add seizures to the list. Actually, the list is pretty short. Mental illness. I hate that word. Some days, I feel like that word is just surrounding me. I have to stop feeling like that. 

This is just it. This is all. He has things that happen that don't make any sense. I've spent my entire adult life trying to make sense out of it all, and it is just fruitless.  I blame it on the medicine. I blame it on the weather. I blame it on my parenting. I blame it on the food he eats. I drive myself insane looking for reason for the madness. It is just madness, though. Right? 

This week I felt like shutting it all down. Never speaking about this again. The only thing that stops me is knowing that so many people still think this is all a made up by parents fake diagnosis. It is not. It is very real. It is chronic. It is impossible. It is life altering. The outlook is grim. (I feel unkind saying that, but it is how I feel today.)

No seizures. Just really screwed up behavior seizures.

Answers

I feel somewhat conflicted when I write because some people reading this sometimes have to talk to me... But, maybe it is better. Maybe that way I don't have to answer questions. Or, the "How are your kids doing?" answer is just answered - and, that is that.

For Boy#1, no answers yet. The neurologist isn't sure what he's going to do. I was hoping to know by today, but, I know that I will not know anything over the weekend. Something is wrong, we all know that. Who knows what, though. 

The Ampyra miracle walking medication is not going to happen for me. I was really sick to my stomach the entire time I took it, so it made me wonder. Lab work confirmed that it is messing with stuff which is messing with me. I don't really care or want to talk about the stuff. 

PROFANITY* (*as the title of this blog suggests, the subject is the use of curse words as adjectives. if you are offended by curse words, quit reading now.)

Things have been sort of dreary lately, so I thought I would lighten things up with my take on the use of curse words. I really always feel bad when I write a bad word. I guess maybe it looks worse than it sounds. Because, apparently, I cuss a lot. So, hearing words fly from my own mouth doesn't seem to bother me.

I went to get Boy#3 out of bed this morning and he had his blanket and pacifier (yeah, I know. I'll ditch the pacifier when I ditch it), and he looked at me and said, "I'm pissed off at you." Well, Good Morning! I mean, do I pick him up out of bed and put him straight into time out? Where the Hell did he hear that? Oh, right. Me. I'm not going to blame it on tv or another adult or another kid. Yeah. Pissed off sounds like something I probably said yesterday.

On the way to get my medicine this morning, I had my mom's car. It has Sirius radio. I like the channel Lithium. Yes, the irony is not lost on me that the music that "defines my youth" is on a station called lithium. I get it. hahahahaha

First, I heard Rage Against the Machine. I mean, fuck is the main word of that song. And, singing along felt pretty cathartic. They kind of stylistically build up to this crescendo of "Fuck you I won't do what you tell me"s. It felt pretty good to sing along. Mother Fucker.

Then, Pearl Jam's Jeremy came on. Which led me to think about the very best time I've ever had while hearing the word "fuck" being said. I went to Lollapalooza about a million years ago and saw Pearl Jam. Oh, I was waiting for it! Eddie Vedder comes out and starts with Jeremy. He knows we know about Jeremy. He was bullied right down the street from us. And, we know it and we know he killed himself and Eddie Vedder knows it... So, he starts singing. And, he comes to the verse I'm waiting for:

Clearly I remember
Pickin' on the boy
Seemed a harmless little censored
But we unleashed a lion
Gnashed his teeth
And bit the recess lady's breast

He gets to the line "Seemed a harmless little.... FUCK". Because, you know, the word was really sort of just starting to be used consistently in music and I was waiting to hear it! Yeah. Best time ever hearing the word fuck.

Oh, btw. Bullying has been a problem for lots of years. I mean, this was a pretty long time ago and you had a kid offing himself in class because he'd been picked on too much. Seems like we should be catching on by now...

How Hard

We have a few neighborhood boys that we've known a long time. They are used to Boy#1. They bring him to me if he's having an episode and ask if he needs his medicine. I reassure them that he does simply need medication and thank them for helping him. Then, I sit down and wonder why I get so lucky and how much of an impact this has on them. They keep coming back, so it must be okay.

Last night his friend was here and no other kids (very rare). So, Boy#1 started to have an episode. It went something like this:

Friend: Boy#1 Boy#1 It is okay, don't get upset.
Me: Come on Boy#1, I'll help you get to the couch.
Friend: You get his arms, and I'll get his legs.
Me: (oh how sweet, please don't let me cry)
Friend: Okay, Boy#1. You'll be alright. You just need your medicine.
Friend to me: You'll get his medicine now?
Me: Oh, yeah, in just a second. (he's already had it)
Friend: He's okay, right? He just needs his medicine and a nap, right? You don't really think he has seizures? I don't want him to.
Me: He's fine. We'll figure it out. Okay?

He looked so sad. And, I realized it is so sad. And, how hard it is for more than just me.