About nine years ago I came down with some strange viral infection called wedon'tknowwhatthefuckitisandyou'reshitouttaluckbeotch. The best way to describe it is to say it was similar to mono or lyme disease. This whateverthefuckitwas got in my neck, shoulder, arm. I was really sick for 3 months, weak and dumb as hell for another 6. I could read text, but most of the time it made no sense to me. I couldn't understand movie plots or follow simple instructions. I would get confused and forget what month it was. Whateverthefuckitwas left me with permanently damaged muscles and nerves in my right shoulder and neck. I've been to about 30 doctors at last count, and tried every kind of treatment, but there are some things doctors can't fix. I usually tell people I have arthritis because it's just easier.
Over the years I've learned tricks to avoid triggering a cycle. Most of these involve avoidance. Riding or driving a car is the biggest trigger. I try to limit car time, and never go on long trips if I can avoid it. (I got brave and went to Milwaukee a few years ago and it took about 3 months to finally have a pain-free day.) Another trigger is typing. I got a laptop which really helped. Add to that a mouse i trained myself to use left-handed. I thought about voice-activated software, but I don't think I could write like that. I learned if I could reduce my movements, even small ones, it helped. That's why I don't capitalize. I'm typing this in Word, so it capitalizes most things for me. Blogger doesn't. When I started blogging I realize the only way I could do it was to not use caps. I can say I've been much better over the past two years. I also think moving to a warm place will help, because I always get better in the summer - sometimes to the point of forgetting I even have a problem.
Anyway that's way too much information and the story behind the no caps.
35 comments:
That's not TMI - you usually have to go into exquisite detail regarding some type of bodily excretion to reach true TMI.
I'd wondered about the lack of capitalization, but not enough to get all nosy and ask about it. I had no idea - thought it was a just a mild e.e. cummings fascination. The reality is far less charming and light-hearted. You're the second person I've met in the last 9 months who has had an illness of the wedontknowwhatthefuckitis variety. That's creepy. And it pretty much sucks.
You're one ornery lady, though. No mystery illness is gonna keep you down for too long! Really glad you've found a way to blog without flipping your body out. The blogosphere is much more fun and interesting with you in it. Oh yeah, and the books are pretty good, too. ;)
What the fuck are you still doing in Minnesota?! Get thee to a more temperate clime ASAP!!! You're not gonna let a few southern crackheads stop you are ya?
angie, maybe i should have called it too much boring information. :D
yes, the wedon'tknowwhatthefuckitis is no fun. it makes it especially hard because there's almost a stigma to having something like that. people tend to not believe it, which is why i rarely mention it, and why i tell people it's arthritis. and of course i no longer have what initially started it.
yeah, i need to get out of here!!
I have also wondered about the no-caps, but actually, I thought it was a nice little personality quirk. I can always tell your comments apart from others on blogs! :-)
Though I'm not generally in the businesss of dispensing medical advice, what you have sounds a lot like fibromyalgia, which my mother has in addition to rheumatoid arthritis. Has any doctor ever tested you for that? Unfortunately there isn't a whole lot they can do about it, but there are certain drugs and dietary stipulations that can help, and a plethora of homeopathic remedies...
I'm not a doctor, but I play one on TV. *G*
I gotta agree with Angie. TMI is scatological. Maybe sexual. Maybe both. Especially if it involves goats.
So whatever happened to the Savannah thing? Ditched or are you thinking somewhere else? The Southwest is nice, but, let's be honest, there's only so much pastel, Mexican kitsch and Kokopellied turquoise a person can take.
And it does sound like Fibro, which until recently, a lot of doctors refused to acknowledge even existed, since it's a syndrome of a bunch of symptoms but no evidence of a root cause.
I know some people with this and there have been some things that have helped them immensely. Like acupuncture. I'm not sure they do needles in the land of the Cheeseheads, but I would highly recommend it. Wow. What does that say about my elitist L.A. outlook?
That and some general bodywork from a good massage therapist, if you're not doing that already, can help a lot.
And no, the needles don't hurt.
s.w. -- it's very similar to fibromyalgia. i was tested, but of course the results were MAYBE. :D a lot of my self-treatment is what a person would do for fibromyalgia.
stephen, savannah is definitely not out. i loved my recent trip there, and that's the place i'm seriously thinking about. it's just hard to work that kind of thing into a writing schedule, but i have to do it.
massage is the one thing that really has helped me. i've been to a couple massage therapist here who almost killed me though, so i quit going. i need to try yet another person. i used to go to someone in iowa who would listen when i said don't touch me there! :D
acupuncture is the only thing i haven't tried simply because everything else i tried made me worse. oh, and my insurance won't pay for it, so that's a huge drawback.
"The Southwest is nice, but, let's be honest, there's only so much pastel, Mexican kitsch and Kokopellied turquoise a person can take."
Shut up. Okay, I admit I'm tired of the red-kerchief-around-the-neck coyote junk, but there's a lot more cool stuff here than just kitsch. That shit's just for the damn tourists. And the Californians who moved out here & have convinced themselves they have to have it to be authentically southwestern.
I grew in the south (Georgia, Mississippi, North Carolina) and there's some good stuff there - but I doubt I'll ever live there again. I really love AZ, though. Even if it is a damn Republican state.
ANYWAY, hope you find another massage therapist, Anne. A good one can help a lot, one who doesn't listen is worse than useless - they make it worse.
i was waiting for that comeback, angie. haha!
both arizona and new mexico would be appealing if a person didn't have to drive so damn far to get anywhere -- which i can't do. i lived in NM, so i know how that is. oklahoma is the same way. my dad moved from oklahoma to ocala, florida, a little over a year ago. he told me ocala was right outside orlando. i thought fantastic! direct flight, hop in a car, go right to his place. hell no! ocala is 100 miles from orlando. that is not right outside to me. but after living in OK, 100 miles is nothing to him. in OK we' go out to eat, and he'd say we were going someplace down the road -- and drive 40 fucking miles. :D are we THERE yet????
Yeah, yeah. Reactionary chick that I am, I couldn't let that one slide - 'specially from a dude living in LaLa land!
;)
I hear ya on the driving. Though I have to say I thought it was hilarious when we first moved here from Chicago. Somebody would suggest a store or restaurant, and then say "but that's all the way across town." I was used to a 40 min. El commute to school and an hour drive to work. Fifteen minutes was nothing.
The sad thing is that if you want to live some place nice in AZ, you are probably going to have to drive to get to a major airport or city. Phoenix is almost as shitty as L.A. in terms of crime and pollution. Tucson is nice, though. Big city that hasn't gotten out of control yet. Great arts community there - music, art, theater, and my personal fav, Flam Chen (fire group).
Dunno. Savannah still seems like the best of the lot so far! Georgia was my favorite state in the south anyway. You've got the coast and mountains & delta in between - really pretty country.
I admit I thought it had to do with a kind of e.e. cummings way of thinking about words. you can certainly make the case that the case of the letters is just an arbitrary rule, and it's not like we don't have plenty of those already.
It makes sense, given what you describe, that you'd skip the key. it definitely is more comfortable to just type without having the perform the Vulcan nerve grip on the keyboard after every period or question mark.
For massage, it sounds like it is a matter of style. I have two massage therapists I go see. one does gentle soft tissue work, which is great when I just feel tense. another folds me into pretzel shapes and squeezes me with vice grip fingers. he's good for when i get that knot just to the left of my spine and just above my shoulder blade. It sounds like the more gentle therapy may be more appropriate for you -- just enough to ease the tension without contributing to your pain.
Accupuncture could help. It was great for my carpel tunnel years back. It's good for chronic muscle and joint pain, in my experience. It did nothing for my sinus headaches, even though I was promised it would. It might be worth a session to see if it helps, though I understand the insurance thing. I have to pretend to be injured to see my massage therapist. "Hi, it's Bill." "Oh, did you fall off your bike again?" "Yeah, that's it."
Uh, that you'd skip the SHIFT key. Doh!
Not boring info at all. I just thought you were an eccentric typist.;)
I hope you can find some peace and pain relief soon.
I was with the e.e. Cummings group.
Not boring information at all, it adds to our concept of you as a person. Sometimes when you only "talk" to someone on a blog, it can be de-humanizing.
I had sort of the same thing happen, except it was in my lungs and left one severely scarred to the point that I have an asthma "type" problem but not really asthma - so I just say that's what it is to keep from having to go through the long and boring explanation ... like I just did here. :)
Come to Texas. There are enough suburbs around the airport that driving wouldn't be that much of a problem.
I'm so used to your typing in lower case that if I saw anything different I would:
a. Believe you had a miracle cure.
b. Think someone other than you typed it.
I vote for Texas, too!
This is so trippy and has to be a pain in the ass. Sorry you have to go through this. I hope you'll find a warming place to live soon.
Funny, I've never wondered about the no caps!!
angie, yeah savannah is top of my list. i think AZ is too bright for me. :D
bill, vulcan nerve grip is right! lol!
well, i received a massage gift cert for christmas, so we'll see how that goes. and next time i meet my deductable i need to seriously look into acupuncture. i was going to an acupuncturist for awhile who was supposed to be really good. she didn't use it on me because she was about 80 percent sure it wouldn't work in my case.
thanks, heather! i thought it was time for an explanation because i was thinking about how annoyed i would be to read something with no caps.
That's a tough road, Anne. Nothing is more frustrating than an illness doctors just can't figure out. It almost sounds like limited meningitis or encephalitis, if there is such a thing (especially given the executive brain function effects right after the infection).
I'd give you a hug, but I don't want to put you in the hospital. ;)
bailey, yep. you would get what i'm talking about! texas is still a consideration, but not high on my list. :(
jeff, i saw jesus in my toast this morning so you never know!
jaye, lol! sorry! maybe i need to visit my brother and check out texas again. but the area i'd probably want to live -- the hill country -- also requires a lot of driving.
kelly, thanks for not wondering! :D that's funny. thanks for not judging me. :D
jason, you might be on the right track. i once talked to someone who'd had viral meningitis, and i wondered if that's maybe what i'd had. i've considered so many things! a hug's okay. just don't get me in a headlock.
:D
If I recall, you were the one going to put ME in a headlock a bunch of months back. ;)
Still saying you should look at Charleston. Never noticed the cap thing, but then I know about the neck thing so maybe I just figured that was the reason for it. Or not. Anyway, as someone who lives out of driving distance, I wish they could sort out the problem and you could go distances again!
Maybe it's your inner chihuahua trying to get out!
jason, i wondered if you'd remember that. lol!!
anne, yes, you've certainly seen my neck in action. :D
and i can't believe that personality test said i was a
chihuahua!!! i never thought of a chihuahua as being a bitter hag, but oh well.
I live not too far from the Hill country(I'm in San Antonio) and there's definitely tons of driving involved anywhere in this area. In fact all the driving is what pushes me to stay home more and more. I hate that it takes forever just to go up the road(if that makes sense)
This is weird; it's the second time this week that viral meningitis has popped up. I had a long chat with my best friend this week and she told me that she spent most of November with viral meningitis. She's still trying to get over it and the doctors told her it takes a LONG time to recover.
I don't blame you for cutting corners where you can; health first. Do whatever it takes so that you(and your body)have less stress. Just don't you dare stop writing those books that give me nightmares :D
Just thought of something: have you considered taking up yoga or pilates?
alex, thanks for comfirming what i thought about the hill country. several people have told me i should move there, but i was pretty sure it wouldn't be right for me.
i've tried yoga and didn't find it helpful. i think pilates would maybe be too much. walking really seems to be the best -- but can't do much of that in the winter here. in summer i'm the crazy lady who walks all over the place. nah, really everybody walks and jogs here. but i need a doublewide jogging stroller and a golden retriever to really blend.
"...your inner chihuahua trying to get out!" LOL...I love it!! Just remember they have as much spirit and spunk as the biggest thing movin'!!
As for it taking "...forever just to go up the road..." in Texas, I can definitely second that! After living in two different areas of the state, I can definitely say that Texas is just miles and miles of miles and miles!!!
dee, i never knew i had an inner chihuahua until yesterday. it all kinda makes sense in a scary way.
I have a friend who is currently experiencing the same sort of thing. I shared your blog and she said she could have written it herself. It got especially bad when she went on a cruise this fall. Her whole body hurt by the end of it. She has had everything tested including the idea she had liver disease. Luckily it has somewhat receded. Your blog really was comforting to her.
patti, i'm glad your friend found this comforting and that she's feeling better. one of the hardest things for me to deal with has been the reaction of friends and relatives. i've learned that i have to adapt to the problem and pace myself in order to have a life, but some people see that as giving up. my sister in law will say come on out and we'll go up in the mountains. it will involve 4 hours regular road, then another three over rugged terrain, then a day of backpacking in. i'll say i can't do that. then she'll say okay, next year. no, won't happen next year either. i'll never do anything like that again. and they get mad. go get that fixed. that's probably the most frustrating aspect.
Okay, put me in Heather's camp (H, it's okay, I only snore at night): I thought it was an eccentricity and an endearing one at that (because you do it). I'm really sorry to hear about your disability. Thanks for writing about it, though. I know it seems like no one would ever want to hear about it; that would probably be true if no one gave a shit about you. Such is not the case, however, as you can see in the comments. I think you're brave to trust us enough to tell us about it. Anyway, I'm getting gooshy so I'll shut up but still, hugs to you. To renew my Man Card I think I'll run down to Iowa and talk to a massage therapist with a baseball bat and see if that won't cure his hearing problem.
hulles, the hard-of-hearing therapist was in st. paul -- on grand -- so you don't have to go far. thanks in advance. ;)
I'm so sorry to hear about your lingering illness, and hope that you are way better soon. Two years ago I suddenly and inexplicably lost my ability to hear speech in my left ear. Medical science has no idea why. With all our great science, there is still a lot we don't know.
Arizona is a warm place, even in winter. There's even something charming about the summer heat. And there's plenty of mystery in the Southwestern deserts. just ask Tony Hillerman.
If you ever want to visit, I'd be happy to show you the town. You can even stay in the Teenager's room...as long as you don't mind the smell of socks. And, I'm sure M.G. and Angie would be thrilled to help tour guide.
Wishing you a FANTASTIC new year!
elizabeth, you are a sweetheart! and you are so right about medical science. and i think it's hard for some people (ahem -- family) to accept that doctors don't have all the answers.
i do sometimes think about flying out there for a few days just to hang out with the 3 of you. that would be fun!
and weird because we've never met! hehe! but i like weird!
I always assumed the lower case was an artistic decision. I think it suits you, although I can't say why exactly.
You better not kill anyone at any point in your life. This blog has all the information the FBI need to profile you. :)
daniel, you are SO RIGHT! there's not much i haven't spilled on here. hmm. wow. i really can't think of anything else to confess.
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