I hate this feeling

I'm sick again. Not the type of sick that would require a rush visit to a hospital or anything, so everyone can take a collective breath, and refrain from calling and yelling at me, thanks. But my lupus is having a field day, and I hurt. And because I've been kind of stressing out lately, my speech has gone wonky on me as well. It's been this way for days.

Unfortunately, there were some calls that I *had* to make, regardless of how crappy my speech was doing. One of which was to my new prescription insurance company, because I needed to make sure their formulary covers my meds, because I can't afford them any other way, and I don't live without some of those medications. C'est la vie, right? Unfortunately, I got a customer service representative on the phone who was a complete asshat, and I was already having a bad day.

While I am aware that I talk painstakingly slowly when my speech is impaired, I *am* understandable. I use very small words, and I'm very sorry for that. But there was absolutely no call for the guy to cut me off and ask to speak to my mother, as though I were an incompetent child. In my continued, painstakingly slow manner, I asked for his supervisor. To whom I explained that I have a brain injury, and that I am a fully functioning adult, and that I was checking on the status of anti-seizure medications, along with several others, and that I was extremely insulted by that particular customer service rep. And I don't really care if I got the man in trouble. That was exceedingly rude and uncalled for.

And while I was explaining this, and I was upset...Mona laughed at me :( She says I sound like a four year old who is just learning how to use big words. And while I know she's right, it doesn't change that I feel rotten. And coming on the heels of "Can you go get your Mommy little girl?", it was just an all around suck.

And I laughed it off, because I know she was just teasing me, but I can't control how I talk any more than I can control getting sick the way I do.

And I hate it more than anyone else could possibly imagine, this complete lack of control. There is nothing worse for someone like me, someone who has always been articulate, been a functional adult sounding person, to be forced to sound like a child verbally. I stutter, and I sound like a fool, and people mock me continuously. And all I can do is sit and take it. And the worse I'm mocked, the worse my speech gets, because the more upset I am, the longer it takes to regain the control. And I'll be this way for the rest of my life.

And don't get me wrong, I'm grateful than I'm alive. I'm unimaginably grateful to my surgeon, the one who left me with any speech at all. I can walk, and talk and communicate. I'm grateful to be alive. I am. I'm grateful for a lot of things.

But being mocked and broken and handicapped is disheartening at best. And at worst, it's crushing. It's heartbreaking, because I can't sit and cry and wail about it. I can't even explain why I'm upset *when* I'm upset, because I don't have the words to explain it. All I can do is sit in silence, and watch the people around me, and be frustrated at my inadequacy.

And at the root, that's how I feel now, almost all of the time. I'm inadequate. I'm sick and broken and a half a person. When I'm feeling fine, it's great. But when a flare hits, and my speech goes out, I feel like less than real. Inadequate. I can't take care of a child. I feel irresponsible because I can't make "plans" and know that I can keep them set in stone, because if I have a series of bad days, no matter what plans I've made, I simply may not be able to handle them. Some days I simply don't drive, no matter what I had going on. The State of California says I can. *I* say I cannot. I choose, responsibly, not to put anyone else at risk.

I feel inadequate right now, because of the mockery this week. And I can't even argue about it, because my speech has gone from bad to worse every day for the last several. And all I want to do is cry. And I'm tired of that.

Daily blogging

It's been a rough couple of days. A lot of that is my own fault, and I can accept that. But it's still been a rough couple of days.

I am angry, that I had another seizure. Angry at myself. Angry at a few other people who contributed to the stress I've been under. Just angry in general, somewhat. I simply want to be healthy again. I don't want to have to worry that I'm broken again. And I hate myself for the fears and doubts and insecurities that rear up when things like this happen.

I'll be going in for a consult with my doctor, who won't actually be able to read the MRI films, but I have to go there are a starting point to get referrals out to everywhere else. It bugs, but there isn't much I can do about it.

After I see my baseline doc, I'll be going in to see a good Neurologist here in town. Among other things, I'll be having the full neuro workup done. Yay. It was so much fun last time, that I'm just *really* looking forward to it.

I don't know. I want to be nice and calm and serene, but I'm not. I'm angry, and feel like having a childish tantrum, even though I know that won't help anything.

And poor Danny is getting the shit end of the stick, because I don't know how to handle things. I used to be able to handle them, but I can't anymore.

And I'm so tired. Physically tired. Emotionally tired. I just feel beaten. Things were going well, and now they aren't anymore. Or maybe they still are, but it doesn't feel that way to me right now.

I'm so frustrated.