international fibrmyalgia awareness day
since today is fibro day, here's the latest on my ongoing lack of cope, how fibromyalgia has impacted me personally, and both the good and bad in my life in spite of this asshole of an illness.
so you already know i struggle with pain, a lot. and for me, at least, fibro is complicated by a host of auto-immune bullshit including chronic systemic candidia, adrenal system dysfunction, a non-functional thyroid, etc. then there's the ongoing memory failure of transient global amnesia, the hypo- and para- osmia and ringing ears (here its d# over high c) from the lyrica fail. those are all old hat now - frustrating, upsetting, unreasonably difficult some days, but as well controlled as possible with medication, tricks learned in PT, offboard memory like twitter and lj, and as much exercise as i can get.
the neuropathy is just a fact of having fibro; some days it's not as bad, but most of the time lately i have little to know feeling from my upper thighs to my toes except burning numb. and my hands/arms are about the same from upper arm down. i compensate wherever possible - my balance walking has improved greatly in the last year because i insist on still dancing. i've even returned to dancing on the boxes at monte cristo when it's too crowded on the floor - go go center of gravity still having sensation and learning how to use that to tell where the rest of me is. i seriously doubt i would have figured that out if i didn't need to and fight to dance - so thank fuck for stubbornness about hanging onto the one bit of the old me that feels the most like home. on the other hand, i cook a shit ton less, with much more simple meals because numb hands plus knives and/or heat are something i don't do as well compensating for. at first i'm super attentive, but then i get lost in directions or ideas and forget to watch my hands closely and cut myself or burn myself endlessly. c'est la vie - the soy and other allergies mean i still eat well and healthy when i can hold onto food, just that it's less complex meals and lots of sandwiches and pasta or rice dishes.
health care with fibro is a mixed bag - i'm now on medi-cal which is california's medicaid plan. my pcp is an asshat, but i don't have to see him except once a year for bloodwork to make sure the thyroid meds are still correct and that my cholesterol etc are good. so at least i have health care, and most of my meds are covered - except the medication for bad pain days.
it took months, but they finally got me into the pain management program at the clinic - i really like dianne who i see there, but we're having a huge issue getting me on pain meds that work, are covered, and that i'm not allergic to. the medication i was on when i had a way to pay for it isn't covered by medi-cal ($585 out of pocket but that's 4-6 months worth, and it's not up for generic til 2018). so far we've applied for the patient assistance program which was cancelled by johnson & johnson without a new program being in place with the spin-off who's now making it, and tried four other medications. one does nothing at all whether oral or iv (i was given it janurary in the ER when my untreated pain was so bad i needed to be checked for a heart attack or stroke - just a pinched nerve or fibro being extra asshole-ish), one does nothing except make me super nauseous at the highest dose possible, and two i'm allergic to - hives, nausea, vomiting and hives and diarrhea respectively. so currently i'm way under-medicated and covered in hives to the point that today i was given a steroid shot and put on a week of prednisone in the hopes of getting them under control. i don't know what to do with this, and if i don't get proper pain management i'm going to waste away - i'm consistently below 95 pounds now, usually closer to 90 at 5'7" because my body's primary reaction to unmanaged pain 9-13 (10 = ovarian cyst the size of my fist, i don't usually start throwing up til 11, 13 = dry heaves until i pass out exhausted, usually in part because i've pulled muscles in my ribcage) is severe nausea and/or vomiting everything i eat until it gets below a 10 again - i average 2-3 days a week where i need heavier pain meds that i can't get right now.
on the bright side of things i have cut abs for the first time ever as an adult, and the model thin waif thing isn't bad on me. plus, i can eat whatever the fuck i want without worrying about gaining weight right now, and i have a lot of clothes and corsets to sell as they're too big. we'd all be okay with me staying in the 95-100 pound range, but below that is too thin long term for me; luckily i have not lost significant muscle so far, but if we don't get my pain back under control i'm going to, and if i drop below 90 for more than 48 hours i'm going to be ER bound again, with a likely hospital stay to boot.
part of pain management is therapy, and eventually when they can work me in more PT and maybe if i can tolerate it chiropractic (i've had bad experiences, if they won't listen to me and get close to my neck or head i'm going to panic, bolt and that'll be over). therapy isn't bad - i like my therapist, she's amazed most of the time i am as well adjusted as i am and that i have coping skills and mindfulness style meditation, controlled breathing, etc to help. but she thinks i'm not emapthic enough toward myself, although she agrees with me that the anger is part of my cope, so keep it if it works. i'm supposed to try to let myself fuck up and be okay with all the memory fail even though it tears me up that i can't do things i should be able to anymore, like write a check or pic my family out of a line at the airport or notice my ex is the person i don't recognize saying hello to me. i will keep working on it, and try to do better with the memnonics and off-board memory transplants, but that's one of the roughest things to cope with as i feel i've lost myself when i can't remember even huge events in my life anymore.
so there you go. fibro is something that can be lived with, and on the occasional really good day i'll still find center in dance. but at least for me, i need something to fight for (again with dance, plus you). and for all my friends and family who are helping me get through this day by day, thank you. it means so much to know you've got my back. also, please if you follow me on twitter or fb and the #almeds tagged stuff is too much, mute me/it - that's for me, part of my off-board brain that lets me track whatever ridiculous crap my body/brain is throwing my way right now. i'll totally understand.
lastly a request. i'm desperate now to get back on the med that works without side effects like hives and stomach fail, and i've been trying to come up with a way to pay for it for a while. so take a look at and share my sales round up post at http://alumiere.livejournal.com/452956.html - 4 kilt sales and that's covered. or funnel folks to the you caring some friends convinced me to set up which is currently stalled at $295 and has been for over a month (that was spent to keep power/gas on and hoops to get pain management team which is now covered by medi-cal) at https://www.youcaring.com/alumiere-pris-540030 - if 24 new people wanted phone/glasses/etc cases or 60 people donated the cost of a drink that would pay for them too. and then i have time to push the manufacturer to put an assistance plan in place so i don't have to go through this again. because i am so not an addict, but i need them when things get bad, which is usually one or two doses two or three times a week.
please, please boost my fundraising - it would be awesome if it went viral. http://alumiere.livejournal.com/452956.html and https://www.youcaring.com/alumiere-pris-540030 anywhere - lj, fb, twitter, ig, wherever you think people might see it who are interested in sewing or swords or might have a few bucks to spare - 600 singles would make a huge difference. and if you've already spent money with me this year, i'm not asking for anything more - you've done your share.
so you already know i struggle with pain, a lot. and for me, at least, fibro is complicated by a host of auto-immune bullshit including chronic systemic candidia, adrenal system dysfunction, a non-functional thyroid, etc. then there's the ongoing memory failure of transient global amnesia, the hypo- and para- osmia and ringing ears (here its d# over high c) from the lyrica fail. those are all old hat now - frustrating, upsetting, unreasonably difficult some days, but as well controlled as possible with medication, tricks learned in PT, offboard memory like twitter and lj, and as much exercise as i can get.
the neuropathy is just a fact of having fibro; some days it's not as bad, but most of the time lately i have little to know feeling from my upper thighs to my toes except burning numb. and my hands/arms are about the same from upper arm down. i compensate wherever possible - my balance walking has improved greatly in the last year because i insist on still dancing. i've even returned to dancing on the boxes at monte cristo when it's too crowded on the floor - go go center of gravity still having sensation and learning how to use that to tell where the rest of me is. i seriously doubt i would have figured that out if i didn't need to and fight to dance - so thank fuck for stubbornness about hanging onto the one bit of the old me that feels the most like home. on the other hand, i cook a shit ton less, with much more simple meals because numb hands plus knives and/or heat are something i don't do as well compensating for. at first i'm super attentive, but then i get lost in directions or ideas and forget to watch my hands closely and cut myself or burn myself endlessly. c'est la vie - the soy and other allergies mean i still eat well and healthy when i can hold onto food, just that it's less complex meals and lots of sandwiches and pasta or rice dishes.
health care with fibro is a mixed bag - i'm now on medi-cal which is california's medicaid plan. my pcp is an asshat, but i don't have to see him except once a year for bloodwork to make sure the thyroid meds are still correct and that my cholesterol etc are good. so at least i have health care, and most of my meds are covered - except the medication for bad pain days.
it took months, but they finally got me into the pain management program at the clinic - i really like dianne who i see there, but we're having a huge issue getting me on pain meds that work, are covered, and that i'm not allergic to. the medication i was on when i had a way to pay for it isn't covered by medi-cal ($585 out of pocket but that's 4-6 months worth, and it's not up for generic til 2018). so far we've applied for the patient assistance program which was cancelled by johnson & johnson without a new program being in place with the spin-off who's now making it, and tried four other medications. one does nothing at all whether oral or iv (i was given it janurary in the ER when my untreated pain was so bad i needed to be checked for a heart attack or stroke - just a pinched nerve or fibro being extra asshole-ish), one does nothing except make me super nauseous at the highest dose possible, and two i'm allergic to - hives, nausea, vomiting and hives and diarrhea respectively. so currently i'm way under-medicated and covered in hives to the point that today i was given a steroid shot and put on a week of prednisone in the hopes of getting them under control. i don't know what to do with this, and if i don't get proper pain management i'm going to waste away - i'm consistently below 95 pounds now, usually closer to 90 at 5'7" because my body's primary reaction to unmanaged pain 9-13 (10 = ovarian cyst the size of my fist, i don't usually start throwing up til 11, 13 = dry heaves until i pass out exhausted, usually in part because i've pulled muscles in my ribcage) is severe nausea and/or vomiting everything i eat until it gets below a 10 again - i average 2-3 days a week where i need heavier pain meds that i can't get right now.
on the bright side of things i have cut abs for the first time ever as an adult, and the model thin waif thing isn't bad on me. plus, i can eat whatever the fuck i want without worrying about gaining weight right now, and i have a lot of clothes and corsets to sell as they're too big. we'd all be okay with me staying in the 95-100 pound range, but below that is too thin long term for me; luckily i have not lost significant muscle so far, but if we don't get my pain back under control i'm going to, and if i drop below 90 for more than 48 hours i'm going to be ER bound again, with a likely hospital stay to boot.
part of pain management is therapy, and eventually when they can work me in more PT and maybe if i can tolerate it chiropractic (i've had bad experiences, if they won't listen to me and get close to my neck or head i'm going to panic, bolt and that'll be over). therapy isn't bad - i like my therapist, she's amazed most of the time i am as well adjusted as i am and that i have coping skills and mindfulness style meditation, controlled breathing, etc to help. but she thinks i'm not emapthic enough toward myself, although she agrees with me that the anger is part of my cope, so keep it if it works. i'm supposed to try to let myself fuck up and be okay with all the memory fail even though it tears me up that i can't do things i should be able to anymore, like write a check or pic my family out of a line at the airport or notice my ex is the person i don't recognize saying hello to me. i will keep working on it, and try to do better with the memnonics and off-board memory transplants, but that's one of the roughest things to cope with as i feel i've lost myself when i can't remember even huge events in my life anymore.
so there you go. fibro is something that can be lived with, and on the occasional really good day i'll still find center in dance. but at least for me, i need something to fight for (again with dance, plus you). and for all my friends and family who are helping me get through this day by day, thank you. it means so much to know you've got my back. also, please if you follow me on twitter or fb and the #almeds tagged stuff is too much, mute me/it - that's for me, part of my off-board brain that lets me track whatever ridiculous crap my body/brain is throwing my way right now. i'll totally understand.
lastly a request. i'm desperate now to get back on the med that works without side effects like hives and stomach fail, and i've been trying to come up with a way to pay for it for a while. so take a look at and share my sales round up post at http://alumiere.livejournal.com/452956.html - 4 kilt sales and that's covered. or funnel folks to the you caring some friends convinced me to set up which is currently stalled at $295 and has been for over a month (that was spent to keep power/gas on and hoops to get pain management team which is now covered by medi-cal) at https://www.youcaring.com/alumiere-pris-540030 - if 24 new people wanted phone/glasses/etc cases or 60 people donated the cost of a drink that would pay for them too. and then i have time to push the manufacturer to put an assistance plan in place so i don't have to go through this again. because i am so not an addict, but i need them when things get bad, which is usually one or two doses two or three times a week.
please, please boost my fundraising - it would be awesome if it went viral. http://alumiere.livejournal.com/452956.html and https://www.youcaring.com/alumiere-pris-540030 anywhere - lj, fb, twitter, ig, wherever you think people might see it who are interested in sewing or swords or might have a few bucks to spare - 600 singles would make a huge difference. and if you've already spent money with me this year, i'm not asking for anything more - you've done your share.