[unfiltered] Robin Williams, Bipolar Disorder, and Suicide

[elialshadowpine]

At this point, I don't think there's anyone who hasn't heard about Robin Williams's death, ostensibly from suicide. Something that does bother me, perhaps more than the assholes that make comments about suicide being the coward's way out (and if this is something lurking in the back of your head, please read this essay, which is the most excellent

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[elialshadowpine]

*hugs*

Jury's still out on whether or not I have EDS. My Fairy Gothdaughter, Bridgette, whom I have been prodding to ask for help on the HMS/EDS group on FB (and I may go do that myself, actually), is dealing with diagnosed hypermobility that has increased in severity in just a month. She is dealing with daily pain, and will be going to college through our state's Running Start program, which pays college tuition for qualifying teens. She wanted to be a massage therapist, but she realized that during the course of Guardians of the Galaxy, all fingers on both hands popped out of joint six times. There aren't many doctors out here that treat EDS-H; I'm asking my friend who keeps updated if the doc that last I knew was in training at UW is ready to accept patients; otherwise we are looking at perhaps flying her out to see Dr. Francomano in Maryland.

Which is an aside, but... yeah. I've had between a half dozen and a dozen people say, "You need to get screened for this because you sound like you have EDS", and I have already been told I am hypermobile. I have the requisite collection of disorders, and both Morgan (who has been diagnosed with hypermobility syndrome, which, depending on who you talk to, may or may not be EDS-H) and I have bitterly commented that we both have families with exceptionally long lifespans (90+).

Pain Management terrifies me. I can get MMJ here, albeit through my partner that has the script (I really need to get my own, but we don't have the money at the moment), but I don't like using it for everyday pain because of how it makes me feel. It's more an emergency pain med. I wish I could get something more than Norco, because it's just not enough. My doctor is hesitant to script even what I currently have, though, and a lot of doctors here won't script; they send to pain management. I worry about the random drug tests, and I worry about the fact that if you have to go to the ER, you'd be breaking the contract if they give you pain medication. As I historically end up needing ER on the weekends (seriously, I think every single time I have been in the ER has been a weekend)... yeah.

I feel much the same way, re: blame. I will be sad, but generally... I understand. I sometimes wish I didn't. But I do.

[ashbet]

Not everyone has the same EDS progression -- sorry, I don't mean to make it sound entirely bleak, my family has been so hard-hit that I'm mostly speaking of my own experiences and those of Kira.

(EDS is a progressively degenerative disease -- it's not technically degenerative in the strict medical meaning, because the collagen defect itself doesn't get worse as you get older, it's just that the injuries and microtraumas and associated damage to connective tissue in joints, organs, etc. add up over time. The effect is a degenerative progression, even though the underlying defect is the same one you're born with. But how it affects each individual can vary -- I didn't develop disabling levels of symptoms until my very late twenties, whereas Kira got hit like a ton of bricks when she was 15.)

And not everyone gets the same co-morbidities -- trigeminal neuralgia is still rare, it's just a lot more common in EDSers than the general population. And that's been the thing that is hardest to live with, because it's affected my cognition so badly, as well as being the condition that most affects my level of functioning -- far more so than my spine, for all that it sucks.

Poor Bridgette -- yeah, massage is very difficult to perform with hypermobile fingers. I consistently jam my thumb and ring finger, and bend other fingers backward, when giving massages -- I enjoy doing it anyway, but I can't do deep-tissue massage anymore, and even back rubs can wind up hurting me.

Maybe she could do something similar but less hard on her hands? Acupuncture could be a possibility . . .

The silver ring splints have helped Kira a LOT. They aren't cheap, but they're well worth it.

Bridgette would need to see a hand therapist (Kira's was an occupational therapist who was a hand specialist) to be assessed and measured, because they're basically a prescription item, and they're custom-made.

They've made a huge difference for Kira -- she adores music and played the double bass, won a national orchestra award, stuck with orchestra for 12 years . . . and had to give it up entirely when her POTS became unmanageable and her hands started to deform after years of hypermobility (her fingertips were growing in different directions.)

With the ring splints, the DIP deformity has gone away, and she's actually started to teach herself to play the electric bass, and she's knitting again (she made socks! Real ones! Before, she'd mostly confined herself to knitting swatches or scarves, but she's actually doing the four-needle sock thing, and her socks are very nice!) It's a huge difference for the better :)

Re: pain management -- my current doctor has it in my contract that if I have a migraine for more than 4 days straight, I should go to the ER.

My previous doctor had planned on trying an infusion procedure on me to see if he could arrest the migraine cycle, but when he left, his successor was unresponsive when I had that hellish 11-day migraine, and without permission to go to the ER, there wasn't much I could do.

This time, I got it written in. You could do something similar -- say "Look, I don't want to go to the ER, and I have only gone _x_ times in the past _x amount of time_, but I need to make sure that we have a plan in place for what I should do if I encounter [pain condition] over a weekend. Either I need to be sure that there is someone on-call here to consult with, or I need permission to go to the ER if needed, with the understanding that we will amend the contract if I am using the ER more than necessary. I don't expect to need it often, I just want to have a plan in place for the times when I injure myself [etc.] on a Friday night, because I can't wait until the next week for treatment."

I'd think most doctors would find that reasonable. (And if you have a prescription for MMJ, you won't be in trouble for using MMJ . . . it's possible that you might have to choose between opiates and MMJ, but since it's legal in your state, there's a possibility that a doc would let you use both.

*big hugs*

-- A <3

[elialshadowpine]

I'll let Bridgette (Boo; I've sometimes mentioned her by her nickname) read this message. She's pretty upset, because it's something she really wanted to do. Acupuncture is a good suggestion; I actually suggested, since she's going into college and would be able to transfer credits to, say, UW, tech work. Morgan, as a systems administrator, works from home because so much server work is done on the cloud now, so they only rarely have to go to the office in Seattle. Their work has been very accommodating; they started out rarely needing to work from home, to needing to work from home more regularly, to working from home almost entirely. But that's an entirely different field, and I don't know how much interest she would have in that.

Is it possible to get the hand splints without an EDS diagnosis?

I hadn't thought about getting that written into the contract; I didn't even know you could do that. I've had to go... um. Let's see. I had to go more frequently in MA because perfume usage was significantly higher there. I think I've gone three times since moving here, which was five years ago? Once for migraine, once for what turned out to be c.diff and they gave me pain medication because I hadn't been able to keep pills down for over 24hrs, and then once for dental pain that I wasn't sure if was teeth or jaw, so they gave me a single percoset. I avoid going to the ER as much as possible.

I do intend to get a MMJ license myself, and I hadn't thought that would help with a pain management clinic. The MMJ helps with the fibro and RA pain, but it doesn't help with the subluxation pain from my hips. Which is weird and annoying, because everything else stops hurting, but because nothing else is hurting, the hips aching is suddenly impossible to ignore. If my hips aren't hurting, though, it's not a problem. While the MMJ is helpful for some things, I would strongly prefer stronger opiate medication because I don't tend to get high off those. I dislike the feeling of being high, at least in the way that MMJ makes me feel. I don't mind the slightly loopy, relaxed feeling from opiates, although I don't get that from what I'm on anymore.

*hugs* TY for the info. I think I am still going to post on the HMS/EDS board re: Boo, however, to see if there is anyone else with info that may be helpful. :)

[arctowardthesun]

This hits really close to home as I've had a bipolar II diagnosis since 16 and got diagnosed with HMS/EDS in May. My right hip has been in and out of joint since late June (thankfully more in than out since early August so I was functional during my wedding/honeymoon) but it doesn't make anything easier.

(A link to the FB group would be great, I'm looking for input about said hip.)