Wed. Night White People Group

I'm a little proud of myself right about now.

I've got the amiable personality, so I'll put my feelings and opinions aside when dealing with others. What I think has nothing to do with how I treat you or even what I allow you to think of me. What you think of me is really none of my business.

Now, let's add religion. I rarely speak of my personal religious beliefs, unless it is with someone I can have a more theoritical discussion and not a passionate-dogmatic argument. No one person will change another's mind. This is why I usually smile and nod when anyone starts peddling their particular brand of salvation.

Problem is I find it terribly disrespectful. Imagine I walk up to someone who isn't Caucasian, Female, American, Democrat, Heterosexual, Red-Hair-Dyer, Harry Potter Nut-Job, or any other cultural affilitian, and take it upon myself to convince them, unasked, why they should become like me. "Hi, I'm in your neighborhood to invite you to a Wednesday Night group meeting. It is to teach you about being White and to help you overcome the temptations of being Black. Come on down!" It could get me shot. (Why? Because there is nothing wrong with being Black... see the analogy yet?) So, why then is it okay and presumed necessary for some Christians to insult in a similar manner?

So now what brought me to this rant. I belong to a support group for people that have my disease. It's actually been really wonderful. I would reccommend everyone check out Daily Strenth (it's on my side-bar >>>) there's something for everyone. Well, we have a new member. A lady who has a 9 year old daughter who has been recently diagnosed. She posted asking a few questions and I was the first to answer. We are all very supportive and help each other. Today she sent me an email through the group asking more questions about medicine side effects, and then proceded to write a book about Jesus, how she was lost, how she hopes I find Jesus, and ended a blurb about the "gift of pain" leading to salvation.

How friggin disrespectful!

Normally, I smile and nod, and go about my day. Seriously annoyed, but oh well. This time I did something. I established boundaries. I am so proud! Here's what I wrote back, after I addressed all of the IIH questions:

For me, Daily strengh is a place for support, tolerance, and understanding, and so it is in that spirit that I feel I need to address the remainder of your email. Diversity abounds in the world as well as in this group, so please understand how someone might find religious peddling disrespectful, as I do. I don't believe it was your intent, you seem like a good person. My personal relationship with God is just that: personal.

Then I went on to talk about her daughter's health again and wish her well. No ill will, just some personal boundaries. I'm pretty proud of myself.

Career Change!

And while anyone who already knows may think I am speaking of my husband who lost his job last week, I'm not talking about him. I had so much fun painting those kids on Friday. My head was okay. The heat wasn't so bad until the sun moved, and even that wasn't too bad. And it's something I'm good at and can get better at. It's a shame I need insurance. And steady income. And I like my coworkers. And I need something to do everyday. But one day I will be able to book some work! One day!

Truth in Advertising?

The Banana Boat commercial depicts a yellow umbrella (much like the insurance company, but theirs is red). This umbrella, I presume, is to illustrate how the banana boat line of suncare products protects us from the sun, much like the shade from a big yellow umbrella would if it were constantly floating overhead. Problem: none of the umbrellas pictured actually provided any shade, therefore protection, from the sun. Would this be subliminal or Freudian truth in advertising?

Just a thought, I'm going back to bed now.
Bax out.

And So are the Days of Our Lives

Shit, spoke too soon. Wouldn't you know it, the very next day I began to feel worse, and it's been a steady downhill since. Doesn't help I've had a parade of people trying thier damndest to raise my BP so the dome of my skull explodes and my eyeballs pop out of my head like some cartoon. I think I may need to excuse myself from all family functions for the rest of my life.

My eye appt went well, which means nothing is damaged, but I still have the papilledima. This is good news. Although I now wonder when I will reach the ceiling of the effectiveness or safety in dosing of my meds. I'm now noticing a pattern with my meds, and I bet he can only increase my doses just so much. We'll just have to wait and see.

Odd bit of happenings occurred over the weekend. Julius asked me to hang out with him. I had to take Olivia to a friend's house for a sleep-over, and Julius asked me if I wanted to go skateboarding with him. I said I'd love to, even though my head hurt cause this never happens, as long as I didn't have to do the skateboarding. We went to the elementary school parking lot, stayed for a little over an hour, and it was good.

Again

I realize I have become one of those one-dimentional individuals that can only talk about one topic on their blog. I take refuge in the fact that I talk about other things on facebook and in actual conversations.

Anyway, I feel like I'm doing better. The moderate to severe pain is only a few times a week. I don't have the tinnitus (sonagram sounding heartbeat in my ears) when I lay down. I used to wake everyday with a headache, now it doesn't start until I've been up for an hour. My head hurts all day, but its now like a "white noise" and I can work through it. Better still, I feel like myself.

Don't get me wrong, I'm still a little freaked out. My vision acts a little wierd sometimes. I always feel better weeks 2-5 of new meds before I start feeling bad again. I'm very paranoid when I can't think of a word, or picture an intersection, or spell something, or cuss like a sailor. One of my friends from the support group is about to get a VP shunt, like the one in the video. If I end up needing one, this is what I want... but what a hairy ordeal. Requires at least three incisions: head, neck, and abdomen. Scary. I didn't look for cool animation for the eyeball surgery... DO NOT WANT! But hopefully, I won't need this and avoid a shaved head.

This may be a lifetime ordeal... I am trying to get a handle on quality of life issues. I saw someone who's had it for 28 years. I'm not sure this is how I want to live for the next year, let alone the rest of my life. Hmmm.

What stage of grief is anger?

I've lost nearly 30 lbs. since August. Woah. Thirty Pounds. I barely move anymore, but I also barely eat anymore, so it took 30 lbs to actually get any smaller (and I'm not really smaller). I bought my first shirt that was a size smaller over the weekend. Funny thing is, I had to buy my other two shirts and two pair of pants the usual size cause I haven't shrunk that much. What is really sad is that the last time I weighed this, I was two sizes smaller. It's hard to get my head around. More so, it's hard to get excited. I'm more into working on self-acceptance, and those people (of all sizes) who would rather be sick than fat annoy me. If I talk about this (weird weight-loss) out loud, I get congratulations (fair enough I guess), but I've had people call me lucky. I'm in constant pain and I'm scared shitless, but I'm lucky. I'm losing weight without doing anything, so I'm not really getting smaller, so I've lost 30 lbs of muscle, and when I do start taking off fat it will likely leave behind nasty bags of elephant skin, but I'm lucky. Oh yea, and when I am a smaller, nasty, baggy, wrinkly, elephantine looking Jen, I'll still have a chronic illness. Someone else can be lucky, I'd rather be fat.

Man, this sucks

So this has been an insanely bad week. Pain has gotten much worse. My work week was only 2.5 days long, but I seriously questioned my ability to keep my job. I can't decide to just not work... I carry the insurance, not to mention the fact I like my job and I don't want to think about what would happen to me if I didn't have somewhere to go every day. There are people who live with this for years... decades even. Well, they don't work, and they end up on months long waiting lists to see neurologists who accept MCD and get spinal taps in the ER (Highly NOT Recommended). So I found myself saying over and over, "I need a plan." Yeah... I don't have one of those yet, no clue actually. Just "do what you can and let go of the rest" and the fear of the day when that will no longer be good enough.

Anyway, I saw my neurologist on Friday. He's an odd fellow. He seems to be in his 50's and was probably home schooled (no offense). He just lacks social skills, that I would almost peg him for having a personality disorder of sorts. Well, I described how my pain has gotten worse, how I've noticed very subtle vision changes (but I am very hypocondriacical), and the facial tingling. I actually got a reaction out of the facial tingling bit. So he upped the dosage on two of my meds, should take a week to feel better he says. I ask when we will begin to talk about shunt. He said a shunt will happen when it is necessary to save my vision. So, I see my retina dr. in May, but hopefully new med mix will have my pressure down and my eyes will be okay.