Aug. 2nd, 2012 10:50 pm
smibbo: (Default)
I got the disability. A year of retroactive too.

I'm so blown away I just keep saying "wow" and grinning and laughing and crying.

A large part of that is just relief, I'm glad its over, but DAMN does it feel good to know there's now a "safety net" behind us at all times. We can take me off the private health insurance too because medicare is part of it. I don't have to clean houses anymore!
(I will still keep my current regulars as they're all sporadic clients and I like them. The point is that I don't HAVE to clean houses then see all the money I sweated and hurt myself to earn go to the grocery store and STILL not have enough for next week. OMFG I cannot tell you how relieving this is. Truly. Things are really truly going to be better.

I feel like my entire life of busting my ass, scrounging and going without and sacrificing and giving myself migraines and bruises on a regular basis, it FINALLY comes back and I can...


For the first time ever I feel like I have permission to truly relax about life. Just a little bit. Stop being scared. Just stop worrying. A little bit.

Wow. Just wow.
smibbo: (Default)
So I've been having weird times, medically speaking. Got a flare-up recently (yes I know its only been two months) and its my own fault. I was spotty about taking my valacyclovir due to weird schedule issues and I KNEW I was playing with fire but you know how sometimes you just can't really accept soemthing? Well obviously I still have acceptance issues with this stupid virus. I somehow thought skipping a dose here or there would be okay, my body would probably be fine. Yeah, great going, Cass. I dunno, this whole thing is still new to me. Do you realize its been almost exactly a year since I was finally diagnosed with meningeal herpes? And things have been so goddamned stressful since then, its hardly surprising that I've had flare-up after flare-up.

And you know what's really at the root of this stupidity of mine? Fucking sexism. (stay with me here, it makes sense) I STILL have severe issues of "validity anxiety". I STILL have this tendency to think no one will believe me, that I'm just being a hypochodriac, that I'm not really sick, that its "all in your mind"

"Seriously, Cass, get a fucking grip," I say to myself. You'd think I'd be past this by now. I'm forty-five years old and I still feel like a little girl when it comes to getting sick. I hear versions of "stiff upper lip!" whenever I feel crappy for any reason. Really. And its maddening too. Because I'm the first person to yell at people about this: you are just as valid as anyone else. your concerns are just as important as anyone elses. But do I apply that to myself? Ugh.

Well the upside to getting old comes into play here; now I am more likely to accept illness and go take a pill and/or lie down now. Because I just get too tired and too sad to fight it. So much easier to just say "okay,I'm sick" and go take something and lie down. Let the world go to hell. It niggles at me, sure, pricks at my conscience to know that while I'm lying there, doing nothing, things are sitting around needing to be done. I'm not being productive. AUGH! LAZY LAZY LAZY! my brain screams at me.

At the very least, I even think about people I could be staying in touch with, letters I could write, phone calls i could make. But I'm lying there, feeling like shit and beating myself up anyway. How non-productive can you get?

So anyway... flare-up city and its my own fault. At least this time I figured it out relatively quick and resolved to double-up or triple up like the infectious diseases specialist told me to do. So it won't get any worse. (and at times like these I think "geeziz, worse? yes, it could be worse, but holy hell I don't WANT it to be worse!!!") but its bad enough I'm taking pain pills again. Which ruins a lot of things I want to be doing. But not completely.

Oy, i know i'm blathering on. The point of this entry really was to just document how dumb I was and now I am pretty damned sure I got it CEMENTED in my head that this isn't some freakin walk in the park. This virus is for-fucking-real and its really in my damned body. I HAVE to take the damned pills every freakin day, WITHOUT FAIL. Its okay if I forget and take it late but I GOTTA take it. and if I can't remember if I did, take it anyway; taking an extra won't hurt me at all.

But the side-effects... I'd forgotten. The nausea and headaches from the valacyclovir. The grogginess and near-stupid of the pain pills. The constipation (yes I went there) from it all at once. THe absolute sedation of the phenergan. Oy.

SO I saw a psychiatrist today. She's good. Hells bells, floodgates opened too. Started telling her about my symptoms and next thing you know I'm bawling in the office. When you say everything that's going on at once, suddenly you realize how bad it can be.
So my welbutrin is going up. Like double. Apparently I have not been taking a therapeutic dose.

And she was completely cool about helping me with the disability papers. Said she'd done it plenty before and she knows it can really help the case. Well how about that? Some good news?

This year i was able to buy some christmas/hannukah gifts for people other than my kids. Man that felt good!!
smibbo: (Default)
I did indeed call my disability lawyer about the latest developments.

Me: So I'm scheduled to see a neurosurgeon and an orthopedic specialist about my back
Lawyer: what's going on with that? is it the meningitis?
Me: no, well I don't know, I just have a problem. My back has been in pain, like serious severe pain, ever since my last stay in teh hospital. Its been going on for three months now
Lawyer: Oh that's GREAT!
Lawyer: oh! uh, I'm sorry. wow, that's not what I meant, I mean, I'm sorry, that is probably really awful for you but um, ah, its great for your CASE. wow, I'm really embarrassed. I'm so sorry. that was awful of me...
Me: [bust out laughing] that's okay, you're a lawyer, you're allowed to say that
smibbo: (Default)
I have had headaches all my life.

As a person with a "chronic illness" (I don't think headaches are considered chronic but the term applies here) I have done what many other sufferers have done: I have a categorical system of description for the myriad forms of pain I receive.

My first migraine occurred after my first child was born. I was getting ready to go to class, looking over the book when suddenly I realized I couldn't read. Letters on the page were disappearing and making it impossible to decypher what was right in front of me. It was like reading phonetic Chinese written backwards. I found this curious and interesting. I told my husband and roomate what was happenning. My roommate said "oh... you're getting a migraine attack. You might as well forget class and go lie down"
"that's ridiculous," I said, "I've never had a migraine in my life! I don't have a headache, just these weird floaty sparkles"
"Trust me, that's a migraine about to happen. Go lie down"
I was chuckling when I went up the stairs. As soon as I got there, I was ravenously hungry. I grabbed a bowl of frozen cherries and started munching. I must have eaten a pound of cherries when the nausea hit me. Then the pain started. It was amazing. I lay down on the bed holding my face and covering my eyes. It was like my first nervous breakdown but without all the tiredness and confusion. It was bright, searing pain. I thought my eyeballs were going to implode. After about an hour, I went and threw up violently. Then it was over. I was exhausted.

I didn't have another migraine for a good ten years. Soon before my third child was born. After that, it was another eight years, during my hospital visit of Spinal meningitis. Ever since that hospital stay, I've been getting migraines at least once a week. I finally went to the doctor and got a prescription and the meds are wonderful. I love Imitrex (even though I don't love the price)

Now, everytime I feel a twinge in my neck, or a dull thudding in my temples, I wonder "is this a migraine building up, or is this just a 'regular headache'?"

Because, see, I still get "regular" headaches too. That never stopped. I stopped taking tylenol/aspirin/ibuprofen for all but the worst headaches a long time ago. I learned to just go about my business and barely notice it. There's no point in fighting a condition if you're stuck with it forever, right? I'm not interested in being dependant upon pain medication unless I am debilitated by the pain. The question is, how often do I walk around in mild pain and not even know it? How often have I lumbered forth, acting like the hind end of a goat just because I'm in pain and I have learned to dismiss it? Where's the line?

Then there's the issue of migraines specifically. I've been looking up information all over since being told by that neurologist that I have migraines. I've come away impressed by the wealth of advice, research and science dedicated to this problem. After learning so much, I start to wonder have I been having migraines all this time and just didn't know it? is that what my nervous breakdown really was? A three day massive migraine?

No answers, just thinking.
smibbo: (Default)
kids gone yesterday. [ profile] decrepit_doll didn't call me before so okay. Yeah, that kinda brought me down but everyone's telling me "that's probably a good thing..." and I know what they mean. Baph was feeling good. When he asked me about it and I told him, I tried to act casual but he still said "I'm sorry hon..." and you know that actually made me feel better.

We went to the Upstart show. Buncha bands playing but we're there to see Jem.
Jem was great... it was kind of weird because she has such a soft breathy voice and her band was totally tight but after a couple of songs, it sounded damned good. She did a cover of "Master Blaster" by Stevie Wonder and it was really good to hear. They also covered some song by The Stone Roses which was a fabulous end to their set.

Thing was, I started having a neck ache. It ws bugging me and bugging me. After about two hours, it turned into a major pain in the neck. So, okay. We decide to go to the ATM machine so Baph can pay cash for his alcohol. By the time we get to Kroger, I was started to just wish I could lie down. So I lay down in the backseat while he's in the store. By the time he got back, I knew this was serious. I took some Imitrex and sat down in the front seat with his hat covering my eyes.

For the next 45 minutes, I was in hell. Waves, very predictable and familiar waves, hit me over and over again. Even though I was crying and clenching my muscles, a part of me was fascinated by it all. There was the slim poker that would stab me from the base of my skull all the way to the back of my eyeball. Then, there was the icey-cold plates that crept around the sides of my head. There was the lead that was poured straight into my jawbone until it filled up and overflowed into my temples. Then there was the flamethrower that occasionally licked all around my brain. Every now and then I was pretty sure my brain was being squeezed out my chin.

Like I said, it was weirdly fascinating. I got the idea that creatures from another dimension were attempting to gain entry into my skull and thus were trying different methods to crack it open. Of course, it wasn't working so every attempt meant someone else would say "you're doing it wrong, what you need to do is hold the flamethrower like this before you turn it on, here let me show you" then another alien would pipe up with "No, I realy think we just didn't pour enough lead into her jawbone, ya gotta make sure it's loaded up properly" so another one butts in with "aw what do you know? I'm telling you the poker will work! Heat it up and let ME have a try with it!"

I assume that argument was weirdly entertaining to them as well.

After 45 minutes and two tylenol later, my head clears up and I'm sitting with a head full of medication and leftover endorphins. Nice feeling!

I practically floated on air I was feeling so good. That whole "yeah but once the pain's gone see, that's why I do it" kinda made sense to me then. Only kinda. I giggled, I was languid, I ate, I laughed, I laid down on the grass and enjoyed the music. It was grand.


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