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.