(no subject)

[sathor]

Don't really feel much better today, honestly. I made a campfire last night and sat out by it all on my lonesome - the moon was full for the first time I ever remember on my birthday. Played some guitar and stayed as philosophical in mind as possible.

My scalp is in the scaly phase now - feels somewhat like scabs. The inflammation went down a lot (around Thursday I swear a lump on the back of my head was bigger than it has ever been.) Not sure if the bump drained yet or not - no real indication on my pillow cases, anyway. Having long hair kinda changes that, though - back when I shaved my head, there'd be blood and pus on the case in little round circles. I know, whoever is reading this, probably doesn't want to hear this...but hey, this is a journal after all. When I die, it's probably going to be one of the only things left of my presence. I know I certainly don't have the network, friends or family to keep me metaphorically alive. At least someone will see the kind of fucked up shit I've had to deal with. Maybe the people that think I'm totally fucked up, "shut-in", "anti-social" will figure out that, you know, maybe I just went through some serious shit for years. Saying it that way, makes me a little fucking angry at my last ex. Of course I'm fucking depressed. The doctor's can't figure it out and I'm exhausted/weak/sick for weeks on end every couple months to a year. Why the fuck couldn't you just stand by me? Why do I ALWAYS have to be fucking PERFECT? Nobody else does though, that's right.

My only hope is that I will in this life figure out some truths, help some others to find it, and leave something behind for future generations. Everything else feels like it's falling apart. Ugh.

What a shitty birthday.

Comments

[elenbarathi.livejournal.com]

Oh dear, what distressing news - last time I was on here, you sounded like you were doing so much better. Hey, at least you had a campfire, the Super-Moon and your guitar for your birthday.

I'm sorry your scalp is doing so poorly. The gory details don't distress me; only you must understand that when a Healer reads descriptions of symptoms, the natural impulse is to do differential diagnosis. So: if you don't mind my asking, what treatment(s) are you currently using, how long have you been using them, and what results are you getting? If none, what does your doctor say about that? Have you had any tests of your immune system, viral load, etc.?

Your last ex... *sigh* She couldn't stand by you because it wasn't meant to be, hon; that's all. But you know this 'never', 'always', 'nobody', 'everybody' stuff is Stinkin' Thinkin'. You don't always have to be fucking perfect - whatever that even means, and as if such a thing were even possible - and you also don't have to feel bad about yourself just because some people don't like some things about you.

Nobody ever likes everything about anybody else. Everyone's gor both good and bad qualities, and opinions differ widely on the definitions of 'good' and 'bad'. Everyone's got different deal-breakers, too; what seems a minor flaw to one person may seem a huge red flag to another.

That whole 'if only' mindset is like the Mirror of Erised in Harry Potter: it can only make a person unhappy. "If only everything had been different, everything would have been so different!" - yeah, true enough, (if trite and tautological) but what of it? We have no power to go back in time and make anything be different - which is a very good thing, because most likely we'd Butterfly Effect ourselves into flaming chaos. The past was what it was, my friend; being bitter about it is a waste of your present.

*hugs hugs* Anyway, many HAPPY returns of your birthday, and may the turning season bring an improvement in your health. Hang in there!

[sathor.livejournal.com]

This was a huge vent session, it's true. I am better than I was - but old habits die hard and as inward looking as I am (while once I thought that was a good thing, maybe not so much) it can be hard to keep the negativity quelled all the time.

I don't have any treatments. It seemed mostly better while I was using sulfate-free shampoo, and I had switched back to a different brand (ran out) for about a week or two before this flare up. I have some more sulfate free stuff...we'll see what happens. The detergent I use for my bed sheets is sulfate-free now, too.

When it gets terribly bad, I will put hydrogen peroxide on it after I shower and scrub well - things open up a bit after that, and the peroxide DOES seem to make some difference. It's just treating the secondary parts of it, though...what interests me is what's going on that's allowing that to happen, which appears to be cicatricial alopecia. I know corticosteroids, topical or oral are often given as a treatment, and I haven't tried those yet (the topicals can be over the counter, so i might.) Even still, it's so random with the way it comes and goes, with no real way to determine what in the environment (if anything) is causing it.

I have a CBC performed every year where I work, because of how nasty petrochemicals are. According to the company doc, I'm completely in the normal range for immune function and everything else. Viral load, I don't know about. They say some forms of cicatricial alopecia are accompanied by high or low numbers in certain areas of a CBC...but i don't seem to have those flags.

The only drugs I had results with were anti-inflammatory, as far as I'm concerned. Anti-biotics seem to treat the secondary infection but if I go off of them, eventually, it happens again. Anti-fungals did absolutely zilch. The biggest problem is that the symptoms WILL clear on their own. It makes it hard to determine what's working and what isn't. I've considered the possibility that nothing does, too, and it just does it's life cycle over and over again.

I know you're right of course as far as the rest goes. It is a terrible entry full of terrible thinking, but it was my thinking nonetheless. At times I wonder if even when I'm feeling chipper and more positive, I'm really just covering up those worries of eternal screwed-up-ness.

In any case...thank you for the happy birthday wishes. It really wasn't so bad, just a hell of a lot quieter and lonelier than I remember any of the others being.

Hope you're doing well

[elenbarathi.livejournal.com]

I'm doing well enough - my birthday and my daughter's birthday were both really quiet too. It's already seeming like early Autumn here; Summer's flown right by.

Ack, hydrogen peroxide; that's like weeding your garden with a flamethrower. Sulfate-free shampoo sounds like a good call, though. One can't fix a systemic problem with topical solutions; I hope eventually you'll find a systemic approach that works for you, but it might take some tinkering.

" At times I wonder if even when I'm feeling chipper and more positive, I'm really just covering up those worries of eternal screwed-up-ness."

Well... you've had those worries of eternal screwed-up-ness for many years, and it's only quite recently that you've taken up arms against toxic rumination, so naturally the worries creep back in every chance they get. That's like weeds too: it's not enough to just get rid of the stuff you don't want; it'll come right back unless you fill the space with stuff you do want, and keep on weeding while it gets established.

Y'know, people with health problems often end up being healthier than people without, because we have to live a healthy lifestyle. The same is true of people with mental-health problems - anxiety, depression, mood-swings, etc. - if one can't afford the luxury of a negative thought, one has to commit to living a mentally-healthy life, and thus may end up more cheerful, stable and resilient than those who didn't have to. It's a process.

[sathor.livejournal.com]

Well, I recently discovered one thing. Corn.

I ate corn on the cob last week, on a tuesday. Sometime wednesday afternoon, at work, I had such bad cramping and bloating (inflammation) that I literally thought I was going to die. I was convinced I ate razor blades or my appendix was going to burst.

I came home and took a laxative, laid down. A couple hours later still pain and bloating, finally went to the bathroom and felt slightly better. Got better after that. Couldn't figure out what caused it until I mentioned it to my mother. She figured the corn, I did some research...and apparently, that's a severe reaction that some people get.

I've had a sneaking suspicion about corn for awhile. Corn syrup replaces most sugar in sodas (when I drink a lot of soda, my facial scars/redness flares up, sometimes even my scalp gets worse.) Same thing kinda happens when I eat a lot of corn based cereals or tortilla chips or what have you.

So I think I've got that figured out - my body doesn't seem to like corn much at all. That's one down - I just need to break myself of even the occasional soda habit, and stay away from foods that have corn anything in them, and see how that goes for a month or two. I'm very hesitant to take dairy out of my diet because it has such a high protein content and I am a bit of a body builder anymore - gluten on the other hand I could probably manage, but it'd be a very difficult and slow process eliminating it. I like a lot of things that are simply -made- on the same equipment as gluten-containing products, such as Oats, that my body otherwise has no issue with (and oats are pretty much a super food, anyway.)

It's going to be a long process figuring it all out. I'm hoping I end up healthier and happier as a whole because of the challenges I've had...but I'm still not so sure about that. There's a lot of things in my life that I can't seem to fix or figure out...even though I'm trying.