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.

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.

I Homeschool. Hey, I'm No Fool!

For serious, President Lincoln.

I have been very hesitant to write this particular blog. People are sure to judge, but that is okay. I am homeschooling Boy#1 (and 2, 3, and nephew#1). Tax increase and higher insurance premiums mean we can not pay the tuition. So, good-bye therapeutic school.

There is no way in Hell I am putting that child in public school. He would get eaten alive. So, his psychiatrist is okay with homeschooling and I am okay and he is okay and away we go. The thing is, I enjoy homeschooling. In many ways, the decision makes me very happy. I also think the school he attended was not able to handle his episodes and they greatly underestimated his potential. Most people's argument against it is "worry for me". Yeah, well. Big Girl Panties.

The episodes. If I keep my act together and space out the medication just exactly right, he is fine. If I screw up - forget it. He actually has been able to verbalize that if he has the medication spread out, he doesn't do what it is he does. There is just deterioration involved with this horrifying disease. I don't know what it means, and I don't want to stipulate.

The teaching. I am an okay teacher, especially if I have good materials. Boy#1 is actually very good in math. He has severe dysgraphia, which makes his handwriting unintelligible. So, the first week I wrote everything for him while he worked it out. I have transitioned to him writing. I told him it was important to work it out because it will use lots of parts of his brain and it is worth it. I really love homeschooling because I can make up something like that and it sounds good and it might be true and it gets him to keep going - I do not have time to Google everything I say. So, I'm teaching these boys of different ages and we're moving along and it is all going to be alright.

Reading. Oh, reading. It is a challenge for all of them. I haven't been able to assess Boy#1's reading skills at all. We'll see. I read as much as I possibly can, so I am privately convinced it is their way to drive me nuts.

That was a bunch of stuff that is probably not terribly interesting.

I told The Father that he needed to teach them some PE skills. As in, how to not get hit in the face when someone throws a ball at them. There was some talk about "lost cause", etc. I said, "If I can teach them to calculate perimeter, area, circumference, and square roots... They can learn to catch a ball.". (i really hope nobody asks them to calculate any of those things any time soon. just know i am trying.)

The Art of Making Impossible Choices Confidently

Cogs and Gears
Spin round my brain at night
Whispers and Fears
Are what keep my mind alight
Insomniac nights are when
I discover I am a poet
The prizes and fame I dream I could win
Fuck that - I am a poet and I know it.

I claimed on FB (which automatically means what I said is truth) that I make impossible choices with confidence. Then, I was asked to explain myself. That got me to thinking. Maybe I do not seem confident. 

But, good grief. The choices I have had to make with ALL of my kids are the equivalent of about 50 Lifetime movies. I have to say - most of the time, I feel like I make the right choice. Everything sort of spins around in my head, then it clicks into place and I am okay with what I need to do. 

Here's the deal, pickles. Being okay with institutionalizing your child for a few weeks is really effing hard. The fact that I do it knowing it is the right thing even though I feel like my heart and soul are being shattered and I am the shittiest mom on Earth - that is what I call confident choice making.

An example of not making the right choice even though I knew it was the wrong choice and it blowing up in my face 1 hour after I made it: I let Boy#1 go camping. He cried and said he had been looking forward to it for a week and he always gets left behind. I had already decided he was not going. I was confident that it was the right choice, albeit the impossible choice. He leaves with his "soft kitty" (a new toy that is licensed by the makers of The Big Bang Theory) that sings the song when you press its paw. 

It broke. I get the call about 2 hours after they have left. He is hysterical and he is having an "episode". What to do, what to do... We'll just leave it at this: he checked out the rest of the day and had to sit in the car and basically made everything a kabillion times harder. Gah. I knew I was right.

Magic Pills

I was approved to start a trial of Ampyra. The magic walking pill for people with MS. I am excited. I asked my IV nurse about it and she said, "Ampyra works about half the time. Either it really helps or does nothing." Oh. Historically, those are not good words for me to hear. But, still. Maybe I will be in the half where it works and I'll be running soon.

Of course, in the great American spirit, it probably costs more than most people make in a year. (combined income) So, if I cannot demonstrate improvement - not going to happen.

People that see me walk probably wonder what my deal is. I try very hard to make my gait as normal as possible when I am around people. If I don't have to walk very far, it is generally okay. Just, please. Do not take me on a long walk. You will be carrying me on the way back. Or, if you are not the carrying sort, leaving me behind on the trail. I don't need walking assistance. I am way too uncoordinated to use a cane. A walker? Eh, not there. (although the shopping cart is my secret walker in the grocery store) I walked down the street to look at the moon last night - it took 15 minutes. It should have taken 5. So, it is just incredibly frustrating to be so darned slow. Oh, and I have fallen 4 times already today. Not like flat on my face or anything life or limb threatening. Just, ouch.

The Magic Pills arrive on Monday. Maybe they work. Well, Hell. There's a 50/50 chance they will!

The One Where Boy#1 Wasn't Really Bloody and Howled Down the Street

"Ah, the suburbs. Fostering the illusion of success since 1950." ~Daffy Duck, The Looney Toons Show

Do I ever hate it when our crazy escapes the house without my knowledge. 

Boy#1 had an "episode" early in the afternoon. There have been some change in routine, and, shockingly! - he's not adjusting so well. He will adjust, it will just take time. I don't know if he's just sad or unsure of how to express how he feels. 

We have a group of kids that come over to play with Boy#1 and Boy#2. To be honest, they come over to play our electronics. Boy#1 does not like to play video games. It is his one of his many forms of rebellion against the norm. (yes, i know. not only is he naturally different (hahahahahahahaha), he finds extra ways to be different to express "fuck you society who thinks I'm not part of you anyway".)  The boy his age in this group of kids is pretty nice and tolerant of Boy#1's quirks - a total Eddie Haskell. I'm not stupid, but I also don't let them play unsupervised.

Then, there's Boy#1's friend from down the street. He's pretty quirky and shows up in costumes and likes to make movies is probably glad to have Boy#1 to just be himself around. But, he is not home very much. The other day, someone knocked on the door and by the time I opened it, nobody was there. Then, I heard a voice say, "Go ahead. Ask me who I am. I dare you!" So, I said, "Who are you?" This boy falls out of our bushes in full old fashioned gangster gear stammering he thought Boy#1 would open the door. I told him to hide and do it again.

Yesterday, Boy#1 left to go see him. I didn't realize he was gone until he came back in crying, but unable to speak. Finally, I got it out of him that he had knocked over our neighbor's bird bath. (I'm really good. Scary good at figuring out what the hell he's talking (groaning) about.) So, I read him the riot act about not leaving the house without my permission and especially when he's having trouble! It was not an effective speech because he left again while I was on the phone in my room with a drug company.

It took me about 4 minutes to realize he had left again.

So, I'm going down the street towards his friend's house and I see two women trying to corral Boy#1 and "help" him. He was running in a circle moaning hysterically and his pants were sort of falling off. One lady was on the phone. With 911. I mean, they had no idea what was wrong with him and he was howling and he kept trying to get away to go down the alley. They also said he had blood pouring from his mouth. Oh, jeez. It was chocolate.

The police came and the paramedics. They were so nice. Didn't make me feel stupid for having pajamas with cats all over them on and a son with chocolate streaming down his face (also lying on the grass howling). They just let us get up and walk home with dignity. 

Dignity means different things to different people. For serious.

The Silver Lining Outlook

So, yeah. MS sucks.

However, Boy#1 is doing so well. Stable as we could hope he could be. Ah. How nice. It does give me time to whine and mope about myself which is indulgent and sort of neat for about half of a day. Do not wallow!

"Find the good - and praise it." ~Alex Haley

Maudlin Me

 This is a picture of me reading that Boy#2 took with the Ipad. Maudlin Me.

Maudlin is a word that my friend uses. I firmly believe that lasting friendships can be founded on understanding maudlin. 

Maudlin: weakly and effusively sentimental

I feel things too much. 

I am having a pretty hard MS relapse. There is pain involved. I have discovered that I don't handle pain very well. And, it is nerve pain. Which advil does not take away. It is pretty easy to feel sorry for yourself when you hurt. I also forget how very much a couple of possible brain lesions can really mess with my mood. Where simply hearing a song takes the breath from my soul and the tears from my eyes. Which is a terrible thing because I am almost always driving and I can't really see out of of my left eye.

My legs do not work quite right and stuff. Which sucks. Mostly, I am fatigued beyond measure. A lady at the store today asked if I was okay. I look sick and tired. I said, "What? I have an autoimmune illness. It is invisible. I look okay, right? That is what people tell me to post to my FB wall if I care....". So, the fatigue is showing.

I was supposed to start Cellcept. I did not. I had the sinus infection that would not end (MRSA and ecoli) and two of my back teeth seem to have gotten bad while I was sick. Not that Cellcept would even work. Nobody knows. But, killing off my WBCs might rot out my entire face. 

It is not that I feel sorry for myself. It is mostly that I worry. That I do not like the feeling that I cannot keep up. That the years are blowing past me. Stealing my essence. Leaving parts of me behind.  

Just Sad

I am just sad. There is really no better way to describe myself.

I will not stay this way, of course.

Boy#1 is pretty sad. The week in the "altered state" did him no favors. I cannot help but find myself terrified that he will slip into these states when things are hard. What if I am not there? That is a really big waste of time, worrying about that. I know that. But, today - I am worried.

I don't want to think about the implications of brain atrophy. If it is contributing to the "episodes". What it will bring for the future. It is not as if I can regrow his brain, right? So. Get over it.

I'm going to try to take better care of myself. That way maybe I will not feel so railroaded by life. The only thing I can really control is my diet, so I will give that a whirl. Having MS is really sucky. I am so tired (yeah, we're all tired. i get that. everyone is tired.). I move in slow motion. Everything is so stinking hard. I can walk. It just shouldn't be so hard.

So, yes. I am just sad. Tomorrow, I won't be.

Snot, Pee, and Me

Today was my IVig day. I hate this day. And, it just keeps showing up. Every 28 days. Usually, I sleep. Today - it was not meant to be. The IV clinic is set up in one large room with individual chairs that recline and iv poles. The nurses station is kind of in the middle. I know the nurses very well because I have been going there so long, so it is very comfortable. The IV meds make me very dopey. I guess I started having some weird nightmare and the nurse woke me up. The people that were in there first getting meds (most infusions last 2 to 3 hours) were talking about their snot. Oh, gads. I automatically thought I was going to hurl. I guess I dozed off.

I woke up to the man next to me. I think he was let out of the hospital too soon and they put him as an outpatient for IVig. He has a very complicated, reversible, and horrid neurological problem. Anyhow, he was really loud. He was paralyzed. He shouted on his phone and at the nurses. Then, by golly, he asked if he could have a urinal. Which he missed. This is not the normal way things go at the IV clinic. I almost hurled.

He is all alone. His sister-in-law (don't know where the wife is) came with her sister and helped him into the wheelchair and stuff to go home. They talked to me and were very nice. She said my chicken salad looked great, but she can only afford to make it with turkey after Christmas. I almost hurled.

I finally got done and left, then had to pull over. I hurled.

I picked my kids up from the cousins/grandparents house. They were all very loud which is very bad for my migraine. I managed to get them into the car. Boy#3 fell on his bottom which hurt his recently operated on peepee. Boys# 1&2 got into a fist fight over the front seat. I started crying. I turned on the radio and Edie Brickell was playing.

And I quit I give up, nothing's good enough for anybody else,
It seems
And being alone is the best way to be
When I'm by myself, it's the best way to be
When I'm all alone, it's the best way to be
When I'm by myself, nobody else can say
Me, I'm a part of your circle of friends
And we notice you don't come around

So, I wiped my own snot and laughed and drove on home. Funny funny funny irony radio.

Then, they locked me out of the house before I could get inside. I peed myself. I laughed again.  Oh, HO. Don't go throwing stones when you live in a glass house, CrazyMommy. You could have used one of those urinals.

His and Her's Brain Atrophy

Boy#1 was very ill and actually was in an altered state. It was really awful and seemed completely out there to me, but - it actually is not a strange occurrence. I think he shut down physically and mentally when he got sick and that led to severe illness.

This is where it becomes tricky making this my story and not putting his whole story out there. 

However, the initial CT scan in the ER showed brain atrophy. The doctor tried to delicately find out if this had showed on previous scans without saying the word "atrophy", but she could not. So, she finally said that was what was abnormal. It has maybe nothing and possibly everything to do with why he went into this reduced level of consciousness. I felt defeated at that moment, but it was the first of many defeated feeling moments.

He was actually just so sick that he was in an altered state of consciousness. It is really scary to witness, but his behavior was not abnormal when compared to the symptoms of semi-comas. 

I have multiple sclerosis and most likely atrophy. I do not even think to ask about my scans. I do have some problems with mental functioning. Not every day, just some days. You can tell by my Scramble With Friends score. Either it is great! Or, just unbelievably dismal. (great is a subjective word, please remember)

The implications of brain atrophy on Boy#1's CT scans and MRIs do not make me feel very good. He has lost some function. Most likely, it will continue. Some people will say that the meds cause atrophy. I will not bother arguing that with anyone. Schizophrenia and meds are what cause the atrophy. And it is a chronic illness. Meaning - it isn't going anywhere.

How does this affect me? It adds to my worry. How will I care for him? How do you help someone reach adulthood and manage adulthood who does not have the best level of functioning? Mom guilt. Always always always guilt. Because, I think there is a linear connection between MS and Schizophrenia.  I can compensate and deal with my brain atrophy. Plus, I do not have psychosis interrupting my thoughts. I am not sure how to help him. I guess just maintain what we are doing and hope for the best.

Truthfully, it is really hard to not lie to myself. To always convince myself that I can handle it and make it all okay. To say, "He is doing great!!! Great in school! GREAT GREAT GREAT" out loud and halfway believe it in my heart. The things I thought were important (learning to read) are not really all that important. Which completely sucks. For me, that is. Boy#1 honestly does not care.

Once again, all I can do is try.

My Mother, My Grandmother

My Grandparents finally moved closer to us. Their house was beautiful and had beautiful surroundings, but it was time to be near. That is good. My grandmother is in the hospital with heart failure. Luckily, she just needs a pacemaker. 

My Granny has been my best friend forever and ever. I stayed with her when I was young, she loved me when I was annoying, my grandparents visited me weekly while I was in college, and my husband proposed to me at their house because he knew it was my favorite place.

The concept of losing her is not one I like to think about. Yet, it is there. My mother is taking care of her in the hospital. It is best.

When I was very young, my grandfather was shot at work when someone was fired. The man used illegal bullets that exploded inside of his body. He was left alive, but paralyzed. My parents took care of them then.

I realized last night, my life has been full of difficult things - and wonderful things, but my family has always taken care of each other. Not everyone is so lucky. But, I have had my Mother and my Grandmother to show me how to stay put together and wear my Big Girl Panties. I am lucky.