Title here – witty later

Today I feel bad for not being crazy enough. Or not hurting enough. Or not being diseased enough. I know this is the depression lying. Telling me that others are soooooo much worse than me and what the hell is wrong with me that I pretend to be sick.

Then I do something that proves my illness like, say, cut myself or pull my hair or bang my head on something to feel better. (Which I haven’t done in years.) Or I walk with a cane or have to take a LOT of pain medication and sleep a lot. (Which I did yesterday – the cane- and should have done today-the sleep.) Or don’t sleep at all. That’s why the start of this is at 2:46 am. Because I’m not ok. Because I am fragile enough to feel like I am actively dying. Or that I am fragile enough to believe I am better dead. 

On my good days I wonder why I don’t have a job. On bad days I wonder why I am alive. Stay awake at 4am and make myself feel worse? ( In this case, yes, because my 10 year old was up at 3am and I can’t let him do that.) Or sleep, and still feel bad? (I just went to check on him and he’s still sleeping so lightly that the hall light woke him up.) Some days it is a choice between feeling like crap or feeling like shit. 

And here’s where the fun comes in: when you feel like this and people don’t believe you. Whether it is about the depression or about the sleep. Or the pain. They question your medical choices. Your meds. Your pain levels. Your depression. Are you sure you have tried hard enough? What if you walked more? Or tried eating more bananas. I had a doctor tell me recently to “eat more red fruit” to cope with a massively low potassium level. I wish I was kidding.  Welcome to finding a new GP. Because I’m pretty sure if that was the answer, my other doctor wouldn’t have called me and said “Your potassium level is super low, please call GP soonest for help with this issue.” And when I called back to to say “Uhhhh Dr K said to eat more red fruit and I’m not sure that’s the answer” and she said “Well, no.  Take double the double amount you already take and retest” and my potassium was still low, this kinda lead me to believe that there’s an issue here and it’s not my adherence to the food pyramid. Even though they have totally changed it from when I was a kid and I don’t understand it or remember it any more. Much like cellular level physics and New New Math. This shit is all new and confusing. And I still say doing subtraction is better than guessing and frustrating the shit out of those of us who know the answer. 

If not being believed and being treated to “brutal honesty” was the answer, more of us would be walking upright and less of us would contemplate dying as a rational answer to our problems. In my case it isn’t a need for suicide, it’s more of a need to not be here; not be this. To be Other Than Alive but without all the freak out that comes with it. Which seems near impossible to do so I keep doing the alive thing. Which still sucks, mind you. I just can’t come up with a better way to be Other Than Alive. And the honesty thing doesn’t help. I know how you feel about me and my illness. I can feel it when I talk to you over coffee. Or read your Facebook posts. Or just by your silence. If it was honesty I needed, I have a Truth Speaker in my life. She will never lie to me. But she also knows when to tell me Truth. And it isn’t always. And it some cases it is never. 

Side note: I haven’t heard from my best friends in weeks. In some cases, years. Because my illness made me too hard of a friend to keep, or I got tired of explaining and apologizing. It’s hard to be a good friend when all you do is need. Money, time, help or attention. In some cases, even asking for gentle treatment becomes too much. Telling people that what they are asking of you is too much, but having a never ending hand out for help. (Spell check just changed “help” to “gecko”. Pretty sure I have yet to ask you all for gecko with my pain. Although, maybe it would help with depression and I’m passing up a perfectly good cure. You never know, do you?) 

I’m exhausted and I am out of answers. And time. And money. And ideas. And me. I’m out of me. I once thought of myself as so expansive as to be able to be enough for everyone. Now I feel like I am not enough for even me. And I *have* to be enough. I have too much riding on me to not be. 
He’s asleep on my floor. Or at least attempting to sleep, laying on my floor. I think I will join him in at least trying. But not on the floor. I promise to be funny later. Just can’t do it at 4:51 am with a sour stomach and an aching body. 

When is a size 16 *not* a size 16?

See, that’s a trick question. Believe me. Every woman who read that went “HA! There IS no *real* size 16!” I’m not sure about Europe, but I do know that here in the US, there is no sizing that goes across brands. Or even different styles in the same brand. I have tried on two dresses, same size, same style, different color – and had one of the two not fit me. What I’m trying to get at is that I don’t grab six dresses of the same size off the racks and after trying one in, assume the rest will fit me, or *not* fit me, in the same way. I have to take the time to try them all on and see what works. And that’s just size. We aren’t talking about that cute little peach dress you grabbed that looked amazing on the hanger and made you look like you’re someone’s least favorite child and this is what you get to wear, Cinderella. Because that happens too.  Just a little too green to go with your skin.  That cut of the front makes you look super busty. There are 100 different reasons that dresses and pants and shirts all don’t or do fit. This whole paragraph is a lead in to medication. So, sorry, to all the men who don’t get this analogy. 
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When you are first diagnosed, or even before that, you will be playing medication roulette. There are  a ton of what I refer to as “starter meds” out there for whatever it is that ails you. And these are medications that have been used for better than half a century. I won’t bore you with a history of any medications, but understand that when I say we have hundreds of meds, these are usually all descendants from an original handful. That until recently, we didn’t even understand *how* they worked on the body, we just knew they did. 

Then add medical diagnosis parameters that didn’t exist even ten years ago. And that’s when shit really gets fun.

When someone asked me “Ugh – don’t they have you on the right meds YET?!” I wanted to cheerfully punch them in the mouth and say “NOPE! STILL FUCKING CRAZY!!” but then we get into that whole “danger to self or others” and I don’t want to have that conversation. Again. 

Imagine for a moment that you need glasses. Some of you already do, so this one is easy for you. Imagine if they guessed at a prescription for you, told you to try them out and if you didn’t see better in six weeks to two months, come back and we will try something different. You still wouldn’t be able to see, but now add headaches and nausea and walking into doorways to it. And trying to explain to people that no, you can’t see yet, but you’re sure hoping that this set of glasses helps. And sorry you can’t make their party, you’re too busy puking from not being able to see right. Now – cross out “being able to see” and put in “being depressed”.  But don’t say it too loud because there are still some ugly stigmas attached to depression that aren’t attached to needing glasses. 

And now think of this – every six weeks to two months, my medication changed. Trying to find one that worked for me, let alone worked and didn’t have hellacious side effects. If it only takes five meds, that’s about a year’s worth of dicking around with meds.That isn’t even talking about if they want to increase medication A twice, add in medication B, take you back OFF medication A, increase medication B and add C… And so on, with a few “same family, different formulation” variations. Then we are talking two years to find a medication to treat your depression. And is there anxiety that goes with it? Are you trying to crowbar more than one xanax a day out of your doctor? And then there are the REALLY fun medications. The ones that don’t make you feel better, and actually make you feel worse. 

I think that is enough to ponder for now. I think I can bring this all together in our next exciting episode. For now I leave you with a photo of Bear really enjoying himself.  

 

Gave myself time off

I don’t even read my email or Facebook while I am working a convention. So, I gave myself a healthy pass for not writing every day. But working at a con for three days gave me many much more material. And funny stuff. And stories about feeling very small. And stories about spending time with beautiful women who play Destiny and are hilarious and kind. And about now important my support system is and why I would be lost without it.  

And since I am now cursing the layout, have a joke that a new friend showed me. It’s from her store from Cinci Comic Expo this week. Lilah* bought me some dragons in eggs. But these were the best joke. Tomorrow I will be serious. 

 

A Woman of a Certain Age

I started this with the idea of listing all the stupid things said to me and about me in reference to any illness I have. I also hope to amuse myself along the way. I have an awful tendency to use the fuck word, but most of the time it’s just like breathing. I don’t even notice. I refuse to say what or even how many shortcuts I have on my phone that have the word fuck in them.


I figured I would start with this one as it is one I was actually talking to someone about, today. It was an old friend, Kay*, who has chronic illnesses herself. It was a conversation about actual age and what she wanted to do for a specific birthday, and we started talking about how this wasn’t how we thought things would go. And not in the general “Oh, gosh, I never saw myself with kids” or “Never thought I would see myself living in Florida!” No. This was things like “Never figured that my teeth would have fallen out and my tendons are disintegrating. I expected to be a little more attractive.” And these were things that we know are related to our chronic illnesses and maybe, in her case, exposure to some pretty fucking serious chemical poisoning for years and years. And this reminded me of a doctor’s visit I had a couple years ago that left me slightly baffled.

I had gone to see my OB for some kind of ladyguts** (TM) problem and I was ticking off symptoms, one after the other. I will spare you them, but it was a hell of a list. He looked me dead in the eye and said “Well, you *are* woman of a certain age.” I like this doctor. A whole lot. I would refer him without a second thought to anyone who would ask. But I was stunned speechless. “Uhhhhh what the fuck does that actually mean?!” was what I said to him. He blinked back at me and said “Well, you know, it’s just that… I mean, at this point in time…  Well. Ok.” I could see him back tracking and attempting the conversation, again. And after we had a productive pause, he went on to discuss with me the things that, while I was too early to be having at 38 or 39, seemed to be having and it wasn’t out of the question. This discussion included medications I was on, things that had happened, the number of children I had. And it was a discussion. Not a vague hand wave to tell me not to worry. That what I had wrong with me was just me overreacting to a heavy period. Turns out, that wasn’t it at all. And if I hadn’t pushed, it probably would have lead to a couple more years of me being miserable for no reason. It lead to a series of tests that showed that there was something that wasn’t normal for a “woman of a certain age”.

My rheumatologist tried using that phrase on me once. And I was much less kind. I was still learning how to communicate with her and deciding if I wanted her as a doctor I was going to be spending a lot of time with. She was awfully new to the practice and to being a PA in general, and I just don’t suffer fools gladly. We managed to work around it. And I am glad we did. Dismissal of symptoms because of the age of the person in question is a big, red warning flag that means you need to find another doctor. Because the symptoms that I am having mean something is wrong. It could be that I need new insoles. It could also mean I need surgery to correct my big toes. (Yes, I know someone who this happened to. No. Thank. You.)

Here comes the second stupid in the same post. I figured since y’all are new, like me, we should just lump a couple dumb things in the same post –

I have lumped this one in with “Oh everyone hurts at 40” because of the age thing. The abject refusal to believe that there is something wrong with me other than “getting old”. No. Not everyone hurts at 40. Not like this. If they did? No one would be going to work or playing softball. They would all be on large amounts of opiates and stay in bed a lot longer. I don’t hurt because I’m 40. I hurt because I have several physical issues that cause all kinds of pain. This isn’t a back ache. It’s vertebrae crumbling and discs bulging. And disc desiccation. So. No. Your blithe dismissal of my physical issue for whatever reason is rude. And wrong. And hurtful. So stop it. Not being able to vacuum my house, clean the cat boxes and do laundry all in one day has nothing to do with my age and everything to do with needing ice packs and Vicodin with a Xanax chaser after that much house work.


Well, that went on much longer than I thought it would. And I am not pleased with it. Which isn’t a request for back patting, it is a statement of intent. This one didn’t go the way I had planned. It wandered away like a small child with a finger up their nose and didn’t come back. But I remember reading that several authors say the same thing over and over – write. Write every day even if you don’t have a thing to write about and you don’t want to write. So. I write. I claim I get a pass while I am in Cincinnati this next weekend. But I have heard that I can put WordPress on my iPad and bug people that way. I won’t even name drop. I mean, unless you want me to. And then I will totally name drop. Because I am a HUGE dork and am always stunned when I have gotten to work with or hang out with someone with A Name because OMG HUGE DORK.

*Names have been changed because first, everyone deserves their privacy and second, y’all had best not sue. You’ll end up with five cats and a five year old laptop. If you’re lucky and don’t get the youngest child, too.

**Ladyguts is a word my daughter taught me. GirlChild may not have invented it, but it sure made me laugh.

Beginnings

The Epic Room of Epicness in all its glory.
The Epic Room of Epicness in all its glory.

That noise you make when someone who is famous and YOUR IDOL FERCRISSAKES follows you on Twitter. I mean, they can always unfollow and you’d never know. Twitter doesn’t send you a message that says “LOL loser, they hit the wrong button”. And thank god for that.

 

Love and thanks to my Epic Sister who is in my phone as Christine the Goddess, for helping me set this up and doing the technical end of things. Between being out of the industry, pain brain and just sheer laziness, it would have never gotten this far without her.