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asleep at mal 9/09
alumiere
with love (and frustration)... the state of me 
1/18/16 23:09
asleep at mal 9/09
hi all… this is not directed at anyone in particular, but i've been overwhelmed by some stuff and wanted to ask everyone to help me out. i love that so many of you care about what's going on with me health wise, that you ask me how i'm doing and listen, that you want me to do things with you. but sometimes the teasing about my newly uber-thin size or my limits, asking me when ?? will be better, or the wtf expressions when i sometimes answer 'how are you' honestly can hurt. and often suggestions on how to fix my body or to just push through something i can't do or that costs too much physically/pain wise are frustrating. so please know that my doctors and i have my health managed as well as possible, i push for the things i can do and enjoy without making shit worse, and if you don't want to maybe hear what ridiculous fubar my body is throwing at me this week (a 50-50 chance i'll babble/vent atm), instead of 'hi, how are you' try 'hi, it's good to see you' or something like that. no apologies necessary, i know you're all coming from a good place, and i probably owe a few of you apologies for venting in your direction after a 'how are you' - but you did ask. also, this is not a woe is me post, but the reality i live every fucking day - it's hard, i'm angry about it, and i screw up a lot when i fail at cope, but i'm fighting to have the best life possible and you all usually make me feel happier, so the recent trend is no doubt an anomaly (i'm stressed out and raw from new to me manifestations of my body fail). i know the hurt is unintentional, that you're trying to help/encourage me... for which i thank you sincerely, but i'm asking you to knock it off for now - i'll let you know when teasing me about my health/size is okay again (once this becomes my new normal it won't be so hard).



i have two primary problems with a host of 'co-morbid' conditions that complicate everything. if you want to know why some things are what they are, here you go...

first is hashimoto's disease, which is an auto-immune endocrine disorder - that means my immune system is attacking my endocrine system rather than taking out viruses, bacteria, etc so i catch everything; it also means that my metabolism (primary target = thyroid) is fubar so my hands and feet are always cold because my body uses its energy to keep my core warm or to move me around; and i don't make hormones of all sorts in the right amounts or at all. it contributes to the need for naps and other tiredness you've all witnessed - because my body doesn't create/handle energy normally due to the lack of natural metabolism sometimes i crash unexpectedly. i take thyroid and other medication to keep things as balanced as possible, but short of gene replacement therapy being developed or a cyborg body, this is a manage it there is no cure problem (thyroid disease runs in my family - go us). it comes with 'neat' co-morbid conditions like chronic systemic candidia (which occasionally blooms into thrush for me - usually when i get sick and every fucking time i've tried to quit smoking - the cloves are an anti-microbial and help keep the candidia in check), and is probably the cause of my ovarian cysts, etc. as a bonus being down to 95ish pounds means we've had to cut my dose of thyroid meds in half - which gives me less fuel to stay warm and probably increases napping, but i can't keep losing weight so...

second is fibromyalgia (with a co-diagnosis of chronic fatigue syndrome) - while there are no definite causes it is a failure of the nervous system to function properly leading to a host of problems. in my case, the big ones are serious pain (i can't remember my last day of pain 5, let alone 0) and peripheral neuropathy (numbness in my extremities - this may also be part of why my hands and feet are always cold - because my nervous system doesn't work right my body doesn't regulate temperature well). but it seems like fibromyalgia is constantly throwing something new and annoying or scary at me. being in pain 24x7 and having to pay super close attention to everything i do since i can't feel my arms/hands or legs/feet a lot of the time is exhausting, so that is also a contributing factor to the naps. added nifty features are my hair falling out in clumps (although it could be hashimoto's too, it's more likely fibromyalgia as getting my endocrine levels right hasn't made it stop), non-specific rhinitis (aka my nose runs all the time but i don't have a cold, etc), brain fog, fibro flares causing random fever/freezing with a need for 12-14 hours/night plus naps sleep, etc. last monday was spent at the doctor then the ER because my fubar presented in a way that could have been a heart attack or a stroke (numb, useless left hand/arm with pain at 10-11; my first ER visit in 20ish years - i hate hospitals, however, the doctor sent me anyway just to make sure) but it wasn't - just fibro or a pinched nerve. and then there's the ongoing transient global amnesia, ringing ears (the electrical wires here are g over high c; our old place they were e-flat over high c), and hyper- and para-osmia that a bad reaction to lyrica caused and have never gone away. bad days include neuropathy to falling down, or the only thing i'm capable of is fixing myself some really easy food and napping with the occasional internet time. but the worst days are when the pain is so bad it ramps to waves of 13 (10 was when i had an ovarian cyst over 7cm in diameter two days later when they got an ultrasound done - it had definitely shrunk by that point though - and i have been unable to reset my scale so...) and i can't stop throwing up - i've pulled muscles in my ribcage from dry heaves way too often over the last 5+ years, although thank fuck at my new smaller size and bonus nearing menopause i haven't had that happen in almost a year - just the empty my guts once or twice and i'm done of 11-12. and it's infuriating that i spend much of the winter in los angeles debating what's worse - not having my cane or increasing the pain in my hands/arms to unbearable levels to use it - but 95 pounds is less weight on my fubar hip and increased flexibility/strength to weight ratio so that's where the weight loss is good. since they're unsure what even causes fibromyalgia (although it's probably a host of different things including reaction to an injury/chronic pain - like my broken hip and the bone spurs in that joint - and auto-immune diseases among others), again, no cure, just manage it as well as possible.

i do my best to cope with all of this, but i fail all too often - i try hard not to take it out at anyone though and if i do i would really appreciate being called on my behavior. and me joking about whatever the fuck is wrong with me isn't an invitation for you to tease me about it - some days i have to laugh at this shit or i'd lose it.

on the other hand, there are good days (which i save up energy and pain points for), loads of awesome people who care about me, and a lot of anger/agrro about all this shit that feeds me energy of a sort. and of course dancing - as long as i can dance i have an outlet and a chance at finding peace/center for a bit (plus a bonus endorphin hit if my body cooperates), so thank you all for indulging my love. also, i know some of you enjoy my frigid hands on the back of your neck when you're sweaty from dancing - if we're close i'm happy to oblige (it warms them up for a little while too).

some obvious to you solutions may not be the right thing for me (for instance gloves and mittens are fucking painful - even super thin ones - and really don't help because i'm not getting enough warmth to my hands anyway). but i have developed work arounds and cheats for a ton of problems, plus people who will help if i need it to do some task.

my doctors and i all keep up with the latest research on both fibro and hashimoto's. sadly, my fubar reactions to some of the medications (lyrica > memory fail aka transient global amnesia and other problems, savella > seizures...) that help some people with fibro are limiting the options (and the controlled substance bullshit for my pain meds are ludicrous). but we will try new stuff if it's a different type of medication or treatment than the ones that have made things worse or that i've had no luck with. also, my #almeds tweets are off-board memory for me (one of the work arounds - it archives, crossposts to failbook, and emails me so i can't forget what my body is/isn't doing right over time and if i have some strange reaction to something it's stored).

i don't quite know how to wrap this up, but fyi the doctor is okay with my weight even if i'm annoyed by having to take in or replace everything i own, so there's that (and i will be selling off the things that are too big that i can't resize - if you've wanted to raid my closet that'll be an option very soon). i have a mostly finished a new winter coat that will likely be getting huge cuffs on the sleeves to help protect my hands more plus a collar that pops up over my ears (the hood doesn't work but i'll make it a separate piece for when it rains, etc). i've been adding more sleeves and armwarmers to my repertoire and warmer thigh highs too, although they're not helping me not freeze as much as i'd hoped. my new phone both replaces my too heavy tablet and has really great voice to text for days my hands aren't working well (thank fuck for tech and the interweb). miss pris is snuggly and makes a wonderful (if sometimes feisty and difficult) purring furball blanket. i love the area i'm in and my neighbors are awesome - we help one another out, and they often bring me plates of delicious mexican food. and dancing with friends is always going to be my go-to release (and generally my only form of exercise as i've learned how to do that without hurting myself), so thank you for sharing the floor with me and making sure i get there and back safely and leaving me alone when i'm napping in the corner so i can wake up and dance a little more. you're all amazing people - i did well moving to los angeles and am thrilled at finding such a good community to fall into.
Comments 
1/19/16 13:03 (UTC)
Thanks for this - first, you did answer my how-are-you honestly, but it may have been on a good day or I just expected an honest answer as...your honest answer didn't strike me as inappropriate or even unexpected. I may be an odd bunny.

Thanks second because this is more than I've heard in a bit - sorry if I missed other descriptions, but I don't recall Hashimoto's. I knew about pain, fatigue, and the host of miserable meds you juggled when I visited you in another apt some time ago - but not really the cause. I thought it was still a mystery - so now I see both a cause and the mystery that follows.

Fucking yikes too. Glad LA is being good to you.
1/19/16 17:00 (UTC)
we've also known each other for years, you've watched me change with the new iterations of my fubar at least from online, and i knew you would want an honest answer.

as for hashimoto's, the thyroid problems were first diagnosed when i lived at the ranch in maryland - so late 90's early aughts? but we were treating it as garden variety thyroid disease which is what mom, uncle, cousin have. hashmoto's determination in 2006-7ish as standard thyroid meds failed and i ballooned up in weight in spite of being really active and eating healthy... the weird thing is that knowing what that is and that it's manageable helps, even if treatment isn't a perfect replacement.

wish i could say the same for the fucking fibromyalgia/cfs. burning numb is so hard to deal with, and i get tired of looking like i'm being beaten up because of the bruises/scrapes/burns i don't notice giving myself.
1/19/16 17:45 (UTC)
*hugs* I really, really hear you.

I hope that your friends will be understanding, and that posting this will help with the inappropriate teasing and will result in fewer taken-aback responses to "how are you?"

*love*

-- A <3

P.S. If you have low BP, this isn't an option -- but I had an unexpected positive side effect from going on Guanfacine for my elevated BP -- it has significantly reduced my Raynaud's symptoms. Might be something to mention to your doc, if it seems appropriate.

Takes a very low dose (1mg 2x/day -- might be lower for you bc you're half my weight) to help alleviate the vasoconstriction and freezing in my hands/feet.

(Obviously, everyone is an individual, and if this isn't right for you, don't worry about it -- but since I spent about 30 years really fighting Raynaud's, and I have Hashimoto's, I wanted to let you know that something finally helped me!)
1/19/16 18:58 (UTC)
thanks! i know you get it, even if our bodys' issues only overlap in some corners.

i do have low blood pressure (108/56 last doctor's visit and i'm always higher at the doctor's than normally), but i also (thank fuck for small favors) don't actually have reynaud's. the fibro neuropathy and hashimoto's are enough.
1/19/16 19:04 (UTC)
Ah, gotcha. The freezing/numb hands and feet sounded like Raynaud's, or at least Raynaud's-type symptoms.

Sorry that the suggestion won't help, but I figured I'd mention it because it had been such an unexpected benefit for me!

*giant hugs*

<3<3<3
1/19/16 21:18 (UTC)
Just as a side note, because though it's not immediately relevant here, it might be helpful to others who are reading:

I also have a fairly bad case of Raynauds, but they were reluctant to try meds with me because of my low BP (90/60). We finally tried nifedipine (a calcium channel blocker traditionally prescribed for high blood pressure) and....the Raynauds is much improved. I went from multiple attacks a day to 2-3 per week. AND my BP had the exact opposite side effect and went up to the normal range. Win-win.

So..(again, this is addressed to others, not Ashbet or Alumiere) don't assume that low BP bars the medication options for Raynauds - if you have a bad case, it's worth a careful try.

1/19/16 21:30 (UTC)
Oh, that's good to know!

Kira and I have some additional cardiac issues which mean that we have to be careful about heart/BP meds, but that's because we have EDS -- so, my experience with meds has been tempered by the fact that both of us have issues with tachycardia and blacking out (Postural Orthostatic Tachycardia Syndrome, one of those lovely EDS problems), so it's important to keep our BP from getting too low, because it increases our already-high heart rate.

But, yes, that is really good news, and I'm so glad that the nifedipine helped you, Cris!!

<3!
1/19/16 23:50 (UTC)
thanks both of you - i have a few friends with reynaud's that i'm going to point this way - your suggestion may be useful for them.
1/20/16 14:08 (UTC)
Interesting Cris, I suffer quite badly from Raynaud's so this is good to know. Although with medicine in my country not being for-profit, I don't know how much chance I've got of being given a prescription for anything not life threatening...