Birthdays

My Birthday 2012

Look closely. You will see the strained smile. The panicked look in my eyes that is screaming "HELP ME". We do this thing in my family where we keep celebrating holidays even though they are fails. My sister and I took this picture to lie to FB. That cake got thrown on me, FTR. You can imagine who threw it.

Boy#1's Birthday 2012

 

 My Birthday 2013

I took this picture on purpose, too. Because I remember the ill-fated party and picture from last year. I wanted to recognize that my life is much better now. It was a nice day - lots of nice people, sentiments, and fun. Good. I like this picture. I don't look like I'm about to crack up, so that. means. a. lot.

 Boy#1's Birthday 2013

That's right. I'm drunk. And, the best I could do with my kindle was to capture myself sort of smiling with my eyes closed. I make no promises when a birthday with that child will be enjoyable for me. Thankfully, it isn't about me. This is an improvement from last year. At least we actually left the house (which did lead me to drink). But, we went out!!!!!!

A Teenage Dream

Here's the deal, Pickles. This girl needed some Xanax - not thorazine and librium. Or,  a priest. 

Throw in a PRN of Zyprexa.... Her skin probably would have cleared up. 

I always struggle with how much information is too much information. But, in the context of what I want to say, I need to give an outline of the last 10 months of medication and Boy#1's ability to function:

July '12 last days of private school with a suicide attempt daily. Teacher and administrators highly wanted me to find a RTC for him to live for a while. Or, have him put inpatient. He is very complicated, I have no idea how I could find a RTC that would work with him. Children's was being remodeled. Again, the doc and I messed with his medication and started the journey of clozaril. He was on 15mg of Haldol and 500mg of Thorazine.

July '12 through August '12 was the great clozaril approval marathon.

August '12 (Mid month) began clozaril. Titrated the dose sloooooooowly to keep immediate difficult side effects at bay. Quickly began to see improvement. Ditched the Thorazine because it was like throwing Skittles in the kid's mouth.

August '12 in march the episodes. I cannot possibly describe them to you. Videotaping them is a serious violation of his privacy. I felt like with every single good thing that would happen, a monster would also sneak up behind us. First, his eyes would move back in his head and would move back and forth. Then, his neck would arch backwards as far as it could be extended. Then, he would start to choke on his spit. Then, he would not be able to speak. Then, His entire body would contort. Then, he would start crying. Wailing. I had to pick him up and carry him to the bathroom. To the bed. He was hungry, so he would shove so much food into his mouth (with me trying to make him stop) until he would choke.  I took him to the ER. His school called the ambulance. Same thing - nobody thought seizures. They would agree with my assessment that it is anxiety induced (because I'm brilliant), but no answers.

December 21, 2012 Began my week of hell. He got sick and quit responding. No drinking. No speaking, no moving. He got the flu and I experienced my first true episode of catatonia. I went to the ER 3 times until somebody listened. Every test was run. The things that were positive were: brain atrophy and a EEG that showed a sort of sleeping wakefulness. 

Since then, we did a 72 hour EEG that showed nothing abnormal. His staring spells where you can move his arm up and it stays there? Catatonia. His episodes? Extreme delusional thinking and behavior provoked by anxiety.

A week and 3 days ago, he started Xanax in the afternoons. One small episode and it was relieved by a PRN of Zyprexa. All I have had is a few days where my afternoons are not spent in some sort of hellish state. I know I will bounce back.

Anxiety. Terror Fear. The teenage dream.

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!!!