MS and Schizophrenia (luckily i only have one of the disorders)

Schizophrenia.

Boy#1 is 13. It makes me feel creepy to blog about him. But, I will a little anyhow. He is struggling a little right now, but this is a historically bad time of the year. The summers seem to disrupt his thought pattern the most. He has been hospitalized this time of the year the most. He has forged a friendship with a very unique girl. She greets us in Japanese, she loves anime, she is pretty out there, and she doesn't seem to notice Boy#1 is out there, too.  I like it.

MS.

I had an MRI. T-spine and brain. I think it was a worst case sort of outcome. I'm not shocked by this. My old brain lesions have become dominant again (basically, recovery undone) and I have new active demylenation. Some new lesions in my frontal lobe, and other places. The frontal lobe is a kick in the pants because I'm moody enough already! Spine: there has been overall progression of multifocal (multiple locations) plaques and spinal cord swelling. These things make me feel sad.

I am off of IVig. I am supposed to start an injection series for adrenal fatigue. And, the new oral medication.

The other thing... The MRI picked up sinus problems. And, my only real complaint is that I have had these headaches with a lot of pressure in my forehead (I thought maybe a weird migraine). No, sinus stuff. So, I went to my ENT, he looked at the MRI and wanted to operate right away. Then, I went for a CT scan right then and he called 20 minutes later to tell me we need to wait because the infection was too severe to safely operate. So, next week. I also have to take doxycycline for 3 months. LOL

So, dammit.

My MS

http://tedxtalks.ted.com/video/TEDxEast-Ari-Meisel-Beats-Crohn

I might be having a relapse. I might be jumping into a new stage of of disability. I don't really know, I'll probably never know, and I know I don't know what to do. 

KNOW

a (1) : to perceive directly : have direct cognition of (2) : to have understanding of <importance of knowing oneself> (3) : to recognize the nature of : discern
b (1) : to recognize as being the same as something previously known (2) : to be acquainted or familiar with (3) : to have experience of

2

a : to be aware of the truth or factuality of : be convinced or certain of
b : to have a practical understanding of <knows how to write>

3

archaic : to have sexual intercourse with

This is the definition of KNOW. These are all of the things I lack when it comes to multiple sclerosis. (I left the archaic definition in because it made me giggle. Nothing can steal my potty humor.)

I see TED talks of people healing themselves of autoimmune illness with diet and exercise. I see that that video of the very strong willed man who used yoga to regain mobility. I should be inspired. Instead, I am selfish. I am jealous. I am angry. 

YOU MUST UNDERSTAND I HAVE TAKEN EVERY MEDICATION EXCEPT GILEYNA (MY  HEART ISSUES EXCLUDE ME) I am no longer on chemotherapy (cellcept, imuran, tysabri). I probably owe the use of those medications to my sinus problems. I have gallstones and kidney stones. I guess I had a gallbladder attack a few weeks ago that sent me to the ER (the pain was confusing). I could not empty my bladder at the hospital. I had to have an in and out catheter to check my urine for infection. I most likely was dehydrated from the vomiting from the nausea. So, the well meaning and not informed doctors sent me home with a catheter to give my bladder a break. The catheter was not emptying correctly. That led to a whole new kind of pain. So, I took it out. Besides, the last thing my already lagging bladder needs is a week long break. It'll never pee on its own again.

I am so tired. All of the time. It isn't fair to my kids. I hate it. I fall asleep like I have narcolepsy. Then, I wake up and Boy#3 is sitting there watching me and he pats my arm and says, "You feel better? You got a rest." It kills me.

I don't want to be Superman. I don't want to run with tires around my waist. I just want to not be weak. I'm at that place where I am willing to eat worms.

 http://autoimmunetherapies.com/helminthic-therapy-worm-therapy-index.html

The Kayak Homeschool Day

I sort of ranted last week about how failure is so awful and defines my parenting. I mean, it does some. Some days are fails. Some days are epic fails. But, a lot of days are just days. I'm the one who can choose to remember the good, right?

My post hurt my family's feelings. And, that makes me sad. Because it was really describing one day. Not every day. Considering the crazy I contend with, I am pretty happy. I choose to be. 

I've gotta say I owe it to my family and my homeschooling family. It is really awesome to have people around you are sharing the experience of raising and educating your children with. Also, it is lucky to make true friends. Friends you will not forget because we are in many ways each other's village.

Slowly, but surely!, I am letting these aspects of my life become more what defines me. I'm sitting here and I am still in my pajamas, but we did school. They learned something. 

We had our end of the year homeschool celebration and it was just a great day. It was pretty, fun, educational, and relaxing. Almost all of the kids learned to kayak - (my two bigger boys and the boy cousins LOVED it). And, you know what??? I went kayaking. Twice! Totally crazy. I took Boy#1 out in a kayak made for two. Then, I went out with my friend. The kayak instructor had asked me several times that day if I would go out and roll the kayak. So, I finally did. He gave me the wobbliest and most likely to flip kayak. So, I delivered. 

I used to be the kind of girl who would flip a kayak without persuasion. Bit by bit - I'm reclaiming her.

Failure Rate

Parenting a special needs child is hard (LOL). I have decided that there is a really high failure rate involved in my parenting. As in, I'm really just failing.

I  know some of you will read this and say I'm not. Or, feel compelled to say that. And, some of you will wholeheartedly agree.

I tried to explain my frustration to my husband (I was screaming, so I doubt he heard what I was saying). How would he feel if he showed up at work and everyone there was annoyed with him? EVERYONE!!! How would he feel if all he ever got was constant criticism? Every single review is a bad review. How would he feel if he tried new and different things and still everyone there was annoyed with him? STILL!!! How would he feel if from the very second he got to the office people started yelling at him? And, worst of all, how would he feel if he got home from work and he was met with the same things? It is a fucked up not funny version of Groundhog's Day. Only, I am 100% sure I will never ever figure out what it is I'm doing so damned wrong.

I'm tired. The failure spills over onto everything. It is pretty toxic. Today was awful. I got up to screaming defiance. I'm sure I'll go to bed hearing it. I don't know. I didn't try all that hard today, either. That comes when all you feel is that you are never right no matter what you do. According to your three employers.

On Mother's Day I was talking to my grandparents and lying about how they're doing. Smiling. Nodding. My husband was getting irritated with the kids. The nerves were jangling. I start itching. I look down, and I'm breaking out into hives. I'm actually breaking out into hives sitting here writing this. So, this is hello and goodnight.

I haven't blogged in a long time because of the failure rate. But, what the Hell. It is what it is.

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.