Silverstar

muuranker, posting in gimp_vent @ 09:17 pm: Transportations
This is a minor vent. Very minor. So minor, comapared, say to haddayr's excellent vent, I am almost ashamed to post it.

I am applying for Disabled Student's Allowance which is about the only grant one can get from the (English+Welsh) government to attend university nowadays. It is almost entirely and utterly a Good Thing, in not only is it a grant, but also it is given without means testing, and yet better still, it isn't just for first degrees, or first-and-second-and-third, but for as long as you want to keep studying.

The two assessors I've had have both been wonderful. Particularly the one I've had for my about-to-begin bout of studying. As with the first one, I've written out my (short) list of stuff that I think will be useful, and come away with a long list of things which the assessor thinks will be useful (feeling encouraged to try, no sense of - well, you know the things which a disabled person can be encouraged to think).

As an example: there is a bus that goes past my house to the bus-station in the next town. From there, a bus goes to the university. I saw no problem with this. Sure, it isn't as convenient, or as safe, as driving my own car, but since I am now a threat to cyclists (and children crawling into the road, and low flying aircraft), that isn't going to happen. So bus it is. With a free bus pass, owing inability to see cyclists, etc.
The assessor (by deft and supportive questioning) drew out my niggling reservations about travel - and authorised travel by taxi when the weather is bad and/or light levels are low (I have very, very poor night vision - never mind the cyclists, I don't people crossing the road in front me).

Here's the kicker: the grant is not for the cost of the taxi, but the cost of taxi minus the bus fare. Which in my part of the world is extortionate (except, of course, as a disabled person, I have a pass, but that doesn't count - it's minus the cost of the fare for a non-disabled person).

WTF? If I could see, I would drive the car (which we own anyway) for, oh, a pound at most, for the 6 mile round trip to the university. As I don't drive, I have a bus pass. If the car was unavailable for some reason other than my sight loss (let's say it's in the garage having a service), I'd have to pay around a fiver for the four busses. Now, what should be deducted from the taxi fare, which I only need because I fall over in the dark, the 'normal student me' car cost? The disabled-student-me because-I-can't-drive-in-the-daylight bus-pass cost? Oh no, it is the cost of going by bus _as a sighted person_.

Personally, the cost implications of this isn't a big issue. Not even a little issue. But whoever made this stupid rule should _think_ about its impact; it means that disabled students are being forced to pay the costs of public transport, rather than getting their entitlement to free local transport, if they choose to use taxis. So they may struggle to use public transport, at risk of injury to themselves, tiredness, anxiety, etc., rather than taking a taxi, simply because the taxi costs what it costs a sighted person to go by bus, whereas the bus is free.

The thing about this rule that really gets me is: the DSA is so close to brilliant, it should be flawed in _little_ ways - minor beaurocratic problems - not in ways that reveal that disability simply isn't understood.

haddayr, posting in gimp_vent @ 12:54 pm: Taking venting to the next level
This article started as rants in locked posts and how it's an article for MPR:
http://minnesota.publicradio.org/display/web/2009/12/29/woods/

kayjj, posting in chronic_pain @ 11:39 pm: I went to the Rhuematologist the other day. it was a follow up from my first visit with him. He said all of my blood tests were normal, but they weren't 3 weeks ago. My SED and another I can't remember were elevated. 3 weeks go I was on medrol and felt fine.

The Dr gave me naproxen, even though I told him I wasn't supposed to take it because Ive had gastric bypass in 2004. He told me because it was liquid I was fine. I told him, again, what my surgeon told me last week and he completely brushed me off and my concerns.

My eyes and mouth; He checked it and I told him I had dry eyes, with watering, and mucus in my eyes that 2 rounds of antibiotic drops didn't clear. I saw an ENT and he said it was not allergenic. I told him my mouth was dry, my tongue burns, my lips burn, and I'm having trouble swallowing. Its classic symptoms of Sjogrens. He told me he didn't know what was causing it, he was impressed and we would treat it for thrush because it wasn't of any significance to him.

... what?

I told him the Naproxen wasn't helping. He said he didn't know what else to give me.

I asked him if we could treat me like I had RA or PMR for a few weeks and see how I respond. He brushed me off... again.

He told me to come back in 2 months and keep taking the Naproxen. He also told me to lose weight. About 40 times in 2 visits. Like I somehow missed the fact I still need to lose some weight.

I can barely walk, or get out of bed, or use my left hand. Forget eating. Everything burns. I am having trouble talking because my tongue hurts. I have a 3 year old to chase down, and he wants me to suck it up for 2 months? I CAN'T. I asked him if he even had an IDEA of what might be going on, he said he was sure it was something autoimmune but he didn't know.. he couldn t even make a guess.

At this point I want to get another opinion but I can't be seen by any i called until April.

Any thoughts on what I can try? Even if to just tell me I'm being a baby and need to suck it up. I'm just feeling really hopeless.

ETA: There is a time line in my personal journal with symptoms etc to see how this all progressed and when it started.

ghymoreid, posting in gimp_vent @ 06:26 am: My future parents-in-law are bastards
This is more a vent/rage on behalf of my fiance. We met at the start of last year, and sadly it has been a long-distance relationship due to his work and the fact that he's based in a town 600 kilometres or so from where I live. But even with necessarily brief face-to-face time over the last two years, and a lot of MSNing, I worked out pretty quickly that he was on the Autism Spectrum. He never mentioned it, so I figured he was either working up to it or didn't figure it mattered all that much given that we get along just dandy.

Anyway, in July this year he, his parents and I embarked on a Epic Trek across the top end of Australia. He and I were on his beautiful BMW motorbike, his parents were in the 4WD/support vehicle. At one point on the road, my boy and his father got into a rather heated discussion, so his mother and I retired to further up the road so as to not be in the way. By now my curiosity had been piqued, and I figured the middle of nowhere was as good a place as any to bring it up - she's a nurse and I used to be one, so I'm familiar with the touchiness that can go with having various diagnoses within the family. I straight up asked her, "Is there an Autism Spectrum thing at work here with *boy*?" She laughed at me. "Have you only just worked that out?" "Actually I've been pretty sure for about a year, but since nobody mentioned anything I thought it would be a good thing to ask."

The kicker? She and his father have known since he was a child and they never told anybody. Including him. He's spent 26 years wondering when he's going to start understanding body language and sarcasm and not being awkward in social situations. At school and church both (they're Latter Day Saints) he was and still is almost totally ostracised from his peer group.

I'm so monumentally pissed off on his behalf it's not funny. I keep thinking "If his teachers had known ..." "If the elders and youth leaders at his church had known ..." "If he had known and been able through adolescence and beyond to explain to people why he behaves the way he does ..." It breaks my fucking heart and I just want to tear his parents new ones over their handling of it.

Yes, by the way, I told him what's "wrong" with him while we were on our Trek. He himself is currently having some anger issues with his parents about the whole thing. They're shutting him down though, mostly through using the guilt trip of, "Sorry we were such bad parents!" He doesn't know where to go from there. Being a sarky bitch myself I'm very close to suggesting he make them a pair of crosses for Christmas and allow them to climb on up and nail themselves to them, but the only practical suggestion I could come up with was to agree with them. Agree with them, yes, you were sucky parents, and now that we've established that, can we move past the guilt and blame and bullshit and discuss why you were sucky. Why you chose not to share the diagnosis with anyone. What thought processes were gone through to arrive at the decision that this was the best course of action. I think he needs to understand, but I'm not on the spectrum myself so I'm not sure.

Any spectrum guys reading this, could I maybe have some insight or suggestions? I'm trying to get him in to see my shrink to talk out some of the anger, but being the holidays it's pretty difficult. Is there anything I can do or say to help? I hate seeing him so upset and depressed and mad. Especially because he tries to make light of all this when he's around me because he thinks that my physical disabilities trump his emotional problems, so he doesn't want to complain around me in case I think he's being a wimp. Sigh. (Yet another example of Patriarchy Hurting Us All. /feminism)

So yeah. That's my vent. Thanks for reading.

danaelaurm, posting in gimp_vent @ 05:38 pm: Dear Bank,
So, you called me to take an appointment for a process I did online, and I'm glad I live with a hearie, because they insist on contacting me through phone (and yet ask my email), have nowhere where I can tell them "no sorry contact me by email I can't use the house phone" and don't take relay numbers. Which wouldn't help all that much since this apartment doesn't have a tty in the first place.

So I go, take an appointment, mention I was called, they ask my info, oh, okay, sorry we don't have your information (wot?) are you sure you received a phone call from us? "No, my mother did since we share the same number for both apartments, I'm Deaf." I point out that since I did this online, I would have appreciated if there were options other than phone since it's at best inconvenient, and more on the unusable side of things. She then asks for details, and I give and she's still saying she has nothing. But we can take an appointment. What about next week? So I take for the 29th, since they close the 28, and she asks after all that if I want to be told if my files appear during the day. "Oh is there a way online?" "Oh, no we call you."

At this point I lost it, took out my hearing aids, asked if she understands what the word deaf means. "If you don't want to we can also just not tell you." I get the point, tell them to call, mumble something about inaccessibility, get out.

WTF is with the callous disregard for accessibility there? >.

stalzz, posting in chronic_pain @ 04:07 am: My thoughts
Please remember
that Love, Peace and Happiness are more important than material things.
Time with loved ones and friends beats running up a huge debt to try and
make others happy in December of every year. The gift of togetherness
beats any material gift that can ever be given and should be celebrated all year long, in my opinion.

kayjj, posting in chronic_pain @ 03:25 am: Has anyone heard of or used injectable NSAIDS? I had Gastric bypass 5 years ago and should not be taking NSAIDS for my possible PMR or RA. My Rheumatolgist prescribed me Liquid Naproxen, but it can still cause an ulcer with my bypass. When I go see him tomorrow, I am going to ask about an injectable as Id rather stab myself daily than risk an ulcer.

johnnydtractive, posting in chronic_pain @ 03:38 pm: hotflashes


last night i had a weird body event. shortly after dinner, i got what seemed like a hotflash. suddenly very hot esp face, sweaty, lightheaded or fluttery feeling in my chest & stomach, increased heartrate, nausea. then i threw up. the sensations passed as quickly as the onset, couldn't have lasted more than 3 or 4 minutes in all. i had this happen once before--with nausea, but without vomitting--1 or 2 months ago, & chose to ignore it. i'm now concerned. other than these 2 events, i don't really have any nausea or dizzyness or any side-effects like that from my meds.

it could be a menopause hotflash. i'm 46, & my period stopped about 4 months ago. i'm also on a program of epidural steroid injections & i know these could be what has stopped my menstrual cycle. (fairly common side-effect of esi's for women). could esi's also cause this kind of intense hotflash?

nausea is fairly common during menopausal hotflashes, but vomitting seems rare. (based on online research). any thoughts?

could it be a reaction to medication? i take kadian (slow release morphine), nortriptyline, pantoloc, & synthroid for my hypothyroidism. also a multivitamin, a cal-mag-vitD tablet, iron, & esp vitamin c chewables which i have been known to chew like candy in the winter (i sometimes take 6 or 8 500 mgs tablets in a day). i'm suspicious of the nortriptyline, & have stopped taking it for now.

any thoughts? any suspicious meds in my list? anyone experience anything similar or hear of anything similar? there are actually 2 hotflash postings on my friendspage right now--mine will make 3--& both seem med related. however, neither of them, to my knowledge, is a menopause-aged woman like me. :)


feedback appreciated! thanks everyone.

xposted

stalzz, posting in chronic_pain @ 12:16 pm: Another bad day
I had a bad day yesterday. I had a bad reaction to my psych med, Cymbalta and I had to go to Denver Heath Urgent Care. I was driving along with my GF and I felt dizzy and disoriented and sweaty, then cold and like I was going to vomit. We went to the hospital and I was seen by the 'triage' nurse dude right away when I told them it was a psych med issue. We had to wait like another hour to get into the exam room to see a nurse practitioner or a Physician's Assistant. That really sucked and I felt worse. They finally got me in and I was put on an IV of saline for dehydration after they spent a LONG time trying to find a vein to start the IV line in! ACK! Getting poked more than 1 time sucks!

I was also given meds in the IV that were for nausea and the TERRIBLE migraine like headache I was having. Sierra was there the whole time hugging me and holding my hand. She's great!

After 4 hours, I was allowed to leave. The IV took a long time to get into me as they had it on a slow drip and once they sped the bugger up, then we were the hell out of there.

We went and ate dinner at Perkins after the hospital. I really needed to eat!

I am so thankful for the health care coverage I do have at Denver Health. At least I can go there for help. This visit to urgent care only cost my normal Dr. co pay, which ROCKS!

gasbarri, posting in seattlepagan @ 10:28 am: OLOTEAS Winter Solstice Event
OLOTEAS Winter Solstice Event

Our Lady of the Earth and Sky invites all to join us for our Winter Solstice event. Come and enjoy the beautiful natural landscape of The Longhouse. This event includes an evening ritual, workshops for kids and adults, a potluck feast, and an indoor pool/hot tub.

Date: Saturday, December 26th ~ 2 pm - 10:30 pm

Where: 23301 NE Redmond-Fall City Road - Redmond 98053 (see directions below)

10:00am Work Party (Please do not arrive before 2:00 pm unless you are attending the work party)
2:00pm Site Opens
4:00pm Workshop: "Crafting time" (with Laura)
4:00pm Kids’ Workshop: "The Wheel of the Year" (with Ruthie & Joshua)
6:00pm Potluck Feast & "Pick of the Potluck!" Cooking Competition
7:00pm Newcomers' Discussion
7:45pm Pre-Ritual Discussion with Main Ritual to Follow (with Jane)
10:15pm Pool/Hot Tub and Shrine Close
10:30pm Closing Circle, Site Closes, Clean Up

( Details )

Our Lady of the Earth and Sky
PO Box 20032
Seattle, WA 98102
Website: http://www.oloteas.org/
Email: oloteas@oloteas.org

twostepsfwd, posting in chronic_pain @ 10:52 am: How to Find Fibromyalgia & Chronic Pain Doctors
Hey everybody,

Somebody posted recently in a thread on fibromyalgia about having trouble finding a good pain management doctor. I know I'm not the only one who's had a frustrating time finding doctors who keep up to date on fibromyalgia research and/or who are competent in pain management. I put together this list of links that I've used to find good doctors. I've had pretty good luck with doctors in the various places I've lived and here is how I've found some of them. I hope this helps someone out there.

( Cut for loads of links & tips for finding doctors )

I HOPE THIS LIST HELPS! If you've found good doctors, will you please leave your comments about how you've found them and what advice you'd give to other patients who are having trouble finding a good doctor? If you leave other similar links that seem useful I may edit this post to add them.

Tags: doctors