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asleep at mal 9/09
alumiere
more less than good news 
2/27/09 2:11
asleep at mal 9/09
what's really got me down is the results from the doctors appointment which wasted half my day yesterday and cost me $1600+ for the visit and the meds for the next 30-60 days depending on the medication (and that doesn't include the meds that i can actually get at walgreen's) - and so far bc/bs won't cover a cent of my treatment - i can't really afford this, but without treatment i'd be killing myself...

he's been running more tests and i'm getting worse, not better

my adrenal system has gotten a bit better in some ways so i get to stop taking cortisol, but thyroid function, systemic yeast infection, and overly coagulative blood is worse - so more thyroid meds (smaller doses 2x/day), back on heparin, fluconazole (which i can only tolerate for about 10 days before it makes me really sick), double the dose of the anti-coag pills to 2 2x/day and add nystatin in the hopes of getting that back under control

and he wants me back on <20g of carbs/day (which means more weight loss - i DO NOT need/want to lose weight, but my body doesn't react well to that few carbs and it just happens)

oh, and apparently i have fibromyalgia - he's ruled out all the other possible causes for some of my symptoms - it's not just chronic fatigue as a result of the thyroid issues which was the original thought...

so more drugs for that including clonazipram and flexoril (the later was previously prescribed only for bad pain days) every night to see if they help - if i'm understanding his diagnosis correctly i've probably had fibro for years (since grad school at least) and been mis-diagnosed and treated incorrectly - luckily i'm allergic to most nsaids so at least the wrong treatment for the pain didn't destroy my liver...

the diagnosis explains some of the difficulty concentrating and multi-tasking which are fairly new; it's entirely possible that the stress of my split going to hell coupled with the excessive work hours last spring/summer/fall worsened my mild symptoms to what i'm dealing with now - which is terrifying to me - i'm making stupid mistakes and finding i have to triple check myself on simple things - also new

gah - how am i supposed to react to this? i do everything i can to take good care of myself; eat right (eat really well actually), exercise regularly, try desperately to get enough sleep (i've been tracking it; i average 7.5-8 hours a day, although i always wake up at least once during that time, usually more), i try to do what the doctors recommend, and i just seem to get worse

and even with the added meds i still can't fucking get to sleep - insomnia is recognized as both a potential cause/aggravator of and a symptom of fibro

wow - depressing post; is it sunday yet? (can't go dancing tomorrow; moving takes precedence; i intend to be out sunday though or i may lose it the rest of the way) - i hope that given some time i'll learn to cope with this too, but really - wtf have i done to make this my life? i don't want to spend the rest of my life coping, i want to enjoy being alive

no comment necessary if it's just an i'm sorry or a hug - i know that already and i love you all for the good thoughts
Comments 
2/27/09 13:16 (UTC)
Let me know if you want any fibro talk, I am a vetran of it these days.
Hugs
J
2/27/09 13:27 (UTC)
and a lot of friends are having major problems themselves right now - i wish i could make it better for all of us...

Ditto!! I've been VERY lucky, actually. I'll send some your way :) Feel better and I hope all things health, new home, ect, improve! *hugs*
(Deleted comment)
2/27/09 16:15 (UTC)
i wish it were meds; the yeast is a common side affect of the hashimodo's syndrome - instead of processing carbs normally my body takes them and feeds the candidia (and breads, beers, other things made with yeast make it worse)

basically there's no cure for this, only keeping it a low levels maybe - at least mine is in the bloodstream and doesn't manifest itself in other ways
(Deleted comment)
2/27/09 17:12 (UTC)
dialysis? my kidneys function fine so not a good answer

i've never been a beer drinker and i've given up bread completely

and your question below - yeah i can have nuts
2/27/09 13:56 (UTC) - worried for ya.
The essence of what I have to say is wrapped in a hug.

I don't blame you for being scared. The idea that you've been medically chasing the wrong issues is a terrifying one. It feels huge. It's like: fuck, how much damage have I done to myself? Fuckin' doctors. I'm glad they're on the right trail now because that brand of pain is a scary one.

Are there foods you can eat that help the weight stay that aren't carbs? Since my weight issues are the polar opposite, I'm totally uneducated about this. It's not healthy for anyone to TOO much fat, but you're a crazy-active woman, w/ the exercising. Some richer foods ain't gonna hurt you much. I'd not thought about this: apparently it's better for you to eat with someone regularly, whether you are trying to gain OR lose weight. It makes you eat a trifle more slowly & attentively. & I know you'd said you & Ty have crazy different schedules. Since B & J are a straight shot up the way, how close it that? Mebbe if your/Bellz's work schedules allow you can have regular lunch/dinner dates when Ty's not around? I know it's way easier for me not to eat slowly/properly when there's nobody else around. I had a pal who used a low-carb protein powder as his every other drink when he was trying to gain weight safely. Neither of these is a Big Shiny Answer, just little things that you're likely already doing that may help. Also, not just nutritionists, but bodybuilder trainers, know all about low-carb weight gain. Does any of your circle know any of them? You'd have to modify their advice for the metabolic considerations of your thyroid, but they might have some tricks you haven't heard of.

You might want to talk to Alexa, about the fibro. She too was misdiagnosed for quite awhile (of course unlike you it took her a LONG time to even see a doc). I know the meds for fibro, though more meds is never good, are way - WAY - better than they were 5 years ago. Ten years ago they basically patted you & said that's too bad! I'm horrified & saddened for you that they could have gotten it this wrong, but if the treatment proves to be a step in the right direction than I'm relieved. Ms. Alexa feels MUCH better after dealing w/ the fibro; still cold = painful, but the sudden jarring pains & absentmindedness seem to be much better. So that's a faint glimmering of good point in what is admittedly a depressing post.

You're getting *the right amount* of sleep, but it doesn't sound like you've been getting good solid sleep for quite awhile. Frankly w/ all the flux in your life (adjusting to Ty, as lovely as he sounds, then move #1, now move #2) I am not surprised. Yet solid sleep, not fitful sleep, is just as important in our bodies' coping w/ things as is good diet & meds, etc. Maybe even more so than meds. I'm always hugely more prone to sickness & even injury when my sleep is light. As a sad & light sleeper by nature, I have to crate a total cave of white noise at night to get the 7-8 hours we're supposed to have. If my honey sleeps over, forget it, I just wind up on the couch. But the lil' environment I have going when solo seems to do the trick. Oh, I wish you luck in that.

I feel (my eight cents continues!) the stress of how your ex handled your split, the fiscal fallout, & the fairly steady stream of Major Change in your life over the past year are largely to blame for the topsy-turviness (duh right?). so once you've developed a regular routine of coming & going & sleeping in your new place, like a month or so of A, B, C, then D, perhaps your ability to focus & rest wil improve. & I don't mean focus = obsess about your health. Just finding new ways to cope that develop into a soothing pattern. We may giggle at the idea of support groups, but finding one for PCOS gave me so much insight on how to deal. It looks like your general area has one for fibro, & I'm sure more skilled digging than my quick glance would turn up something for thyroid disease. That would have to wait until you're a little more settled in but might help.

[cont'd]

Edited at 2009-02-27 01:58 pm (UTC)
2/27/09 16:51 (UTC) - Re: worried for ya.
thanks - i am scared, and my brain is struggling to wrap around yet another level of broken

weight - yeah, i know about protein powders and drinks (i have a hard time w/ them - they make me really nauseaus to the point that i can' always keep them down)

rich foods? oh gods do i eat rich foods - but i find it really hard to eat enough food (and impossible to get enough fiber) when it's just meat and cheese - the last time i went down to this level i started to move toward ketosis (when you don't get enough carbs your body processes food differently and that's bad too); i've been trying to find a balance but when i'm down that far on carbs it doesn't happen (balance that is)

i also find it really frustrating because i'm eating as much as i can and barely hitting 1000 cals a day - the all protein diet is ridiculously filling

sleep - yeah, i know - but unless i drug myself into oblivion i don't ever sleep 7-8 hours at a stretch regardless of anything else around me; i sleep 3-4 hours, wake up for a bit, then sleep another 3-4 after another dose of sleep meds - between the pain and the nightmares it's just not happening

ty actually helps with the sleep a bit; when i'm curled up with him i sleep a bit more soundly and i'm less likely to get out of bed when i have a nightmare

i've found a couple of fibro groups online which i'll likely join - hopefully that will help
2/27/09 13:57 (UTC)
[cont'd]

I know I don't have to tell you to stand your ground w/ your new landlord, but yeah. You're establishing your dynamic w/ him now. So now is when you have to be politely assertive. If he's not getting back to you, leave a message/send a certified letter w/ these problems again (especially the screaming toilet &b the heat! Gah!) & say if you get the problems fixed out of pocket, you're taking it out of the rent. I mean, no need to be mean about it, just find wherever it is in your lease that says he's responsible for the problems, reread it to his voicemail, & call whatever social services renters have out there (tenant's association, etc) & make sure the law backs up your right/need to fix these issues. I mean, even in CA it gets COLD, & someone w/ your medical issues needs to be able to warm up.

Most place's issues come to the forefront at moving time. No place ever reveals itself until you're there. If I'd known about the tissue paper thin walls in my units, I might not have moved here.

Once you figure out how to cope - & you will. You are one tough babe! - You can get back to a more normal rhythm of doing the job, working on dreams on the side when ya can, lovin' your guy & bein' loved by him & maybe a few lucky others, dancing with friends, etc. Don't let this overwhelm you. I'm relieved you're in CA when this is happening, clearly a better atmosphere for you than MD would be. It's like nay other big project I've seen you tackle successfully..like, oh, moving across country, dealing with the split (even if how it was handled by other parties was wrong), family, friends; you are a born manager. You can manage this. I hope you bitch way more often than you currently do 'cause even if ALL friends can offer is "hugs" or they're having their own problems, people miss you & want to help. OK, sometimes it's not a full cup they're offering, but even just writing it all down for progress's sake is key. (Um, so I am not a total hypocrite, I WILL make more time for my own health too.) Sometimes we just wanna hear you.

& yeah, here's the obligatory, I love you. I'm kinda glad I'm not your type, actually, 'cause then when I say things like I wish I could cuddle you & make you warm, you know it's nurturing I mean. & when you call me gorgeous I know you mean it. ;)

I know likely 99% of the above you've already thought of. Luck, & at least call Ms. Alexa, as I'm sure she can properly empathize.

Edited at 2009-02-27 02:02 pm (UTC)
2/27/09 17:22 (UTC)
i know what you're saying - but i don't always want to post this stuff even semi-publicly - i keep a personal journal as well and track a lot of this there

i will try to do a better job of posting though - it gets hard because i really don't want this journal to just be another place to bitch about how much things suck
2/27/09 15:32 (UTC)
I have a package to send you! Should I use the Van Nuys address? Or is there a newer address that's more convenient?
2/27/09 16:21 (UTC)
i'll email you the new address - we're bouncing back and forth between places so much i forgot all about that - but can you put off sending it til the middle of next week?
2/27/09 16:37 (UTC)
You bet. And congratulations on the new home.
3/12/09 11:40 (UTC)
hey - got your package today - it's huge (and there are enough f$*&#%@ foam peanuts to fill my tub ;) ) - many thanks

hope things are getting better (or at least less topsy-turvy and stressfilled) now that the store is closed; i'm sad we didn't get the chance to get to monterray before you had to close though
2/27/09 16:11 (UTC)
put your next rent payment directly in to an escrow. thatll get the land lord on the phone right quick. maybe even a threat to do so would be good. In any case doccument doccument doccument and dont unpack anything thats not vital... yet.
oh and HUG, neyah.
2/27/09 17:51 (UTC)
i was diagnosed with fibromyalgia. Hugs! It sucks but if you eat well, try to get sleep, and remain patient with yourself, it gets easier. Key to all of this is remaining patient.

people who don't deal with sleep dep issues haven't a clue how it fucks up everything - memory, stamina, the ability to articulate things clearly. so make sure you communicate when you're feeling sleepy to your friends so that they understand.

I found meditation helpful. I'm working too hard right now to make time for it... but, well... eventually.

be careful with the clonazepam. It's addictive. You'll only need to worry if you need more of it for the same effect, but still..

xoxo!
2/28/09 8:56 (UTC)
Do you need help on sunday? I'm working tomorrow, but Sunday, if you need anything, you know where to find me.
3/1/09 22:24 (UTC)
The first time you try the Flexeril, make damn sure you don't have to do anything for the next twelve hours. Especially if you're within the normal BMI range. It has next to no effect on me--just takes the edge off the arthritis--but twenty minutes after taking half a pill, my wife is so gone I have had to carry her to bed on occasion. I can get her out of bed again in eight after half a pill, eleven after a full pill, but not if I want to, you know, keep my head attached.

It is now Sunday. I have my coat on in the house. I so envy you left coasters right now...

and even with the added meds i still can't fucking get to sleep - insomnia is recognized as both a potential cause/aggravator of and a symptom of fibro

I know you can't afford it right now, but I'll tell you fer surten--buying a Tempur-Pedic was the best two grand we ever spent, both for Allison's fibro and for my arthritis. When tax refund time comes around, assuming you're not getting fucked like we are this year, if you have the money to invest, I can't recommend it highly enough.

If you're looking to maintain your weight while doing the low-carb thing, assuming you're not lactose-intolerant (skimmed again, didn't see it), cheese. Cheese cheese cheese. Luverly luverly cheese. You can top anything with cheese. Stick with harder cheeses for lower carbs (feta is one of my four basic food groups, srsly), but if you're missing the wonderful world of dessert, mascarpone can be dolled up nicely to resemble yogurt, ice cream, etc.

This was a pretty depressing reply to a pretty depressing post. :) Kid gave me strep this weekend. It's actually a good thing I'm not working next week...
3/2/09 3:26 (UTC)
flexoril - i've been prescribed it for years for bad arthritis pain - takes the edge off and makes sleeping easier, but i can function (and even wake up albeit a bit slowly) after a full dose

i want one; atm we have an aerobed with a 4" temperpedic topper - it's pretty good, but i'd like the full mattress (but highly doubt i'll have the cash for one this year) - but i've had insomnia forever (it's actually less bad now than it used to be)

cheese - yeah, i eat so much cheese it's crazy - probably 10 ounces or so a day - and lots of meat, but i still lose weight

the one thing i don't miss about the carbs is the desserts - sometime in college i lost all desire for sweets/sodas/etc

i've been tracking what i eat on spark.com - getting a better idea of what i'm eating (damn it my favorite veggies all have a good amount of carbs)

goal atm is 50g or less net carbs per day (20 is too low, was at 100 but yeast is worse, finding a balance for this is a pita)

and not a depressing response; some good suggestions - sorry you've got strep though (ouch)