nightshade1972: (Default)
A fairly short one at that, but anyway.

I signed up for a particular website a little over a year ago. This site is devoted to crafters who are disabled. I took a handful of well-lit pictures of some of the plastic canvas tissue box covers I made (they fit over square or rectangular tissue boxes), posted them on the site with prices, and waited. The lady who runs the site, who's also disabled, said she'd be responsible for all the advertising. Guess how many tissue boxes I sold last year? One. And that's because I posted a link to that site here on LJ, one of my LJ friends saw it, I directed her to the other site, and she bought one of my TBCs.

Cue the first inkling of a problem. Because I was already personal friends with the lady who bought my TBC, I dropped her a note after I mailed it to let her know it was on its way. Next thing I know, the lady who runs the crafter's site emails me asking me WTF I'm doing, I'm not supposed to have personal contact with clients, only she is, yada yada. I told her I had no problem abiding by that for ppl who were strangers to me, but for someone who's actually a friend, I didn't think telling her to keep an eye out was such a horrible thing.

Last year, she let me run my part of the site the way I saw fit. This year, she's decided the whole site needs to "look more professional", so she suggests I retake my pictures. Then she insists I retake my pictures. Then she demands I retake my pictures. The pictures were taken against a pale yellow background, under a lot of light, and really showed all the colors of the various TBCs quite well. I admit some of them were only of the TBCs themselves, without any actual tissue boxes underneath them/tissue poking out of them, but it's not that hard to tell by the size and description what the TBC's intended use is even if there's no kleenex in it. If you look at similar products on ebay, very few of them look like they've been shot in a professional photo studio. I'm handicapped, which makes it difficult for me to photograph things like a pro. If I could afford to hire a pro to do it, I would. You'd think since the boss lady is also handicapped, she'd understand that, but I guess not.

She also unilaterally decided it would be a great idea if we offered a "free" box of kleenex with all the TBCs. She sends me ten bucks and tells me to send her the receipt. Well, before I knew she'd even been thinking about this, I'd gone to Sam's Club and bought myself a ten-pack of square tissue boxes, for my personal use. No idea where the receipt is, since it never occurred to me I'd need to keep it. I emailed her back, told her so, and asked her to just trust me for the ten bucks. Initially, she says fine, no problem. Well, she emailed me a week or so ago to tell me she's apparently sent me *another* ten bucks, and she wants me to send her a receipt. One, I still haven't sent out any from the set I bought for my personal use originally. Two, I had sorta assumed *I'd* let *her* know when I needed more money for tissues.

Then she emails me around October of this year to tell me my contract's expired, and I need to fill out a new one. Well, if she sent it to me, I can't find it, and I emailed her back to tell her so.

She's still pestering me about the kleenex money and about the retakes, and she still hasn't gotten back to me with a second contract to sign.

I give up. I sent her a very carefully worded email asking her to just remove me from her site entirely. If she can't be bothered to send me a contract to sign, and if she's gonna send me more kleenex money without having a signed contract in hand, I'll happily refund the ten bucks but I dunno why she'd send it in the first place.

ETA: Bosslady claims she *did* re-send the contract, twice. Also claims I misunderstood her about the $10-for-kleenex thing. I politely told her to remove me from her site and I'd happily refund the ten bucks. So that's that.
nightshade1972: (Default)
Originally posted by barrelofrain. Reposted by nightshade1972 at 2012-10-18 00:37:00.



My lovely friend [livejournal.com profile] damnitnicole suggested a friending frenzy when I mentioned that I missed the olden days of LJ, where folks all hung out and chatted on various comment threads and really made friends. So, here it is! Feel free to share this around and make some friends of your own. :)

I'm 28, live just outside nyc with my partner, am queer and gender non-conforming, and I'm disabled from a circus of chronic illnesses. I spend a lot of time baking, writing, sending people silly things via snail mail, drinking tea, growing my own veggies (and dreaming about having a farm with chickens and such), and being involved in miscellaneous social justice issues.

I would particularly like to be friends with some combination of the following...

- other gimps/PWDs
- writers
- genderqueer/gender non-conforming folks
- people who actively attempt to be anti-oppression

So, for example, if you are a genderqueer disabled writer, or an anti-oppression gimp, I would love to be friends. Other applicants also encouraged. :) I am looking for people who are fairly active on LJ (you don't have to comment on every post, but I am interested in getting to know you and don't just want lurkers). If you want to add, just leave a comment/send me a message and I'll drop you a line introducing myself a bit more.

Fair warning: I have a potty mouth. I sometimes don't post for a week or two, and sometimes I post more than once a day. I post some writing in my journal, but I do not do (and am not interested in reading) fanfic. I don't do drama. I do tell it like it is.

nightshade1972: (Default)
[Error: unknown template qotd]
nightshade1972: (Default)
[Error: unknown template qotd]
nightshade1972: (Default)
I started seeing my (now former) neurologist at the end of '06.  Pretty much the only positive thing I can say about him is that he filled out the RFC which allowed me to get disability.  Other than that, however...

I've been trying to get in to see a neurosurgeon for the last three years.  That's when I found out the guy who did my last two revisions relocated to CO (I'm in TX).  I finally managed to see New Guy about two weeks ago.  He looked at my MRI from a year ago and said "You do realize you have two fused vertebrae in your cervical spine, right? You do realize that it looks like you have a syringomyelia in your cervical spine, right?" Um, no...total news to me.  So New Guy wanted me to get a new MRI done to confirm what he thought he saw.

I went home and looked up "syrinx" and "syringomyelia" online.  I've been having numbness in my extremities (sometimes one arm or leg, sometimes both, sometimes one side of my body) for at least two years, which would be nicely explained by the existence of a syringomyelia.  The last time I mentioned the numbness/pain to my (now former) neurologist, I was nearly in tears.  I asked him if there were any further tests that could be performed to determine why I was in so much pain (at this point I had no idea about the fusion/syringomyelia).  He very flippantly told me "No, I don't think you need any of those tests...but I can send you to a pain management clinic, if you like."

Today I had a follow up visit with the neurologist.  I mentioned New Guy's suspicions about the syringomyelia.  He left the exam room and was gone for a while, while he looked at the old and new scans.  Hubby wondered why he left the room to look at the scans, since there was a computer right in the exam room.  I told him there was a distinct possibility the neurologist might look at the scans and blurt out "Oh, shit!", and he didn't want an audience if that occurred.

The neurologist came back into the exam room and rather angrily told me that he saw no evidence of syringomyelia in either the old or new scans.  He claimed I'd never mentioned the numbness in my extremities in any of my previous visits, and he knew this "because he always writes everything down".  I quite calmly said to him "Maybe you forgot to write it down?"  He snapped, and told me he didn't like the fact I was "such a difficult patient, always accusing him of things, and he didn't like to 'fire' his patients but in this case he felt he had no other choice."  He curtly said goodbye and left the room. 

The important concept to keep in mind here is that, just like any doctor's office, the neurologist has a form you fill out at the start of your visit, asking about any new or worsening symptoms.  I've been making note of the numbness in my extremities for at least the last two years.  So even if he did *not* "write everything down" in my case, *I did*.  So A, his memory's not as perfect as he thinks it is, B, he never read the patient form, or C, he never transcribed the information on the form into the practice's computer system.  Which leads us to D, none of the above scenarios is my fault.

Now, is it possible that the neurosurgeon is just a cut-happy guy who likes to get paid for doing a gazillion possibly unnecessary surgeries a year? Of course it is.  But I'd take the word of a guy who makes his living by physically poking around inside somebody's nervous system over the word of a guy who grasps the basic theoretical concepts, but was too chickenshit to take the extra step and actually become a neuro*surgeon*.

If "being fired" had to happen, at least it happened at a good time.  Hubby's office is changing insurance plans, so I'll have to see who's on the new insurance's provider list.  And I think I've given up on the idea of seeing a local provider, at least for the complicated "zebra" stuff.  I'm gonna try to find a neurologist in the TX Medical Center, which is about a half-hour car ride on a good day, but at least those guys are used to dealing with zebras like me.

ETA: I have an appt with a new neurologist! I went to my neurosurgeon's practice webpage, looked to see what neurologists were affiliated with his practice, picked a name and sent her an email.  She wrote me back right away and told me that she doesn't see pts (she's a researcher), but she gave me the contact info for a good neurologist.  His office just called me, and now I have an appt set up for the end of July.  Yay me! :-)

This is me

May. 6th, 2012 10:44 am
nightshade1972: (Default)
Originally posted by [livejournal.com profile] rainbow_goddess at This is me
I was researching the "ALL THE THINGS!" meme, and I discovered this blog entry at Hyperbole and a Half. It is apparently the origin of the "ALL THE THINGS" meme, and it explains my life so perfectly I have to share it.

This is why I'll never be an adult.
nightshade1972: (Default)
We had a power outage the other day that apparently fried my external USB router.  I couldn't find my original installation disc.  Plug and play wasn't cooperative.  I had started to seriously consider the possibility that I might have to replace my router. 

Fortunately, I finally heard back from tech support.  They gave me two links to try to download the driver from.  First link didn't work, the second one did. 

Hubby didn't believe me when I told him about a year ago that I thought I needed my own router in here.  There's enough distance between the original router and this room that I just wasn't getting signal strength at all.  Spent $40 on the USB router, and I was up and running like a champ.  Best forty bucks I ever spent, but I'm just as glad I didn't have to do it a second time.
nightshade1972: (Default)
If you've raised kids (or been one), and gone through the pet syndrome, including toilet flush burials for dead goldfish, the story below will have
you laughing out LOUD!

I had to take my son's lizard to the vet.

Here's what happened:

Just after dinner one night, my son came up to tell me there was "something wrong" with one of the two lizards he holds prisoner in his room.

"He's just lying there looking sick," he told me. "I'm serious,Dad. Can you help?"

I put my best lizard-healer expression on my face and followed
him into his bedroom. One of the little lizards was indeed lying
on his back, looking stressed. I immediately knew what to do.

"Honey," I called, "come look at the lizard!"
"Oh, my gosh!" my wife exclaimed. "She's having babies."

"What?" my son demanded. "But their names are Bert and Ernie, Mom!"

I was equally outraged.

"Hey, how can that be? I thought we said we didn't want them to reproduce,"
I said accusingly to my wife.

"Well, what do you want me to do, post a sign in their cage?" she inquired.
(I think she actually said this sarcastically!)

"No, but you were supposed to get two boys!"

"Yeah, Bert and Ernie!" my son agreed.

"Well, it's just a little hard to tell on some guys, you know," she informed me.
(Again with the sarcasm!)

By now the rest of the family had gathered to see what was going on. I shrugged,
deciding to make the best of it.

"Kids, this is going to be a wondrous experience," I announced. "We're about to witness the miracle of birth."

"Oh, gross!" they shrieked.

We peered at the patient. After much struggling, what looked like a tiny foot would appear briefly, vanishing a scant second later.

"We don't appear to be making much progress," I noted.

"It's breech," my wife whispered, horrified.

"Do something, Dad!" my son urged.

"Okay, okay." Squeamishly, I reached in and grabbed the foot when it next appeared,
giving it a gentle tug. It disappeared. I tried several more times with the same results.

"Should I call 911?" my eldest daughter wanted to know.

"Maybe they could talk us through the trauma." (You see a pattern here with the females in my house?)

"Let's get Ernie to the vet," I said grimly. We drove to the vet with my son holding the cage in his lap.

"Breathe, Ernie, breathe," he urged.

The vet took Ernie back to the examining room and peered at the little animal through a magnifying glass.

"What do you think, Doc, a C-section?" I suggested scientifically.

"Oh, very interesting," he murmured. "Mr. and Mrs. Cameron, may I speak to you privately for a moment?"

I gulped, nodding for my son to step outside.

"Is Ernie going to be okay?" my wife asked.

"Oh, perfectly," the vet assured us. "This lizard is not in labor. In fact, that isn't EVER going to happen. . Ernie is a boy. You see, Ernie is a young male. And occasionally, as they come into maturity, like most male species, they um . . um . . . masturbate. Just the way he did, lying on his back" He blushed, glancing at my wife.

We were silent,absorbing this.

"So, Ernie's just, just . . . excited," my wife offered.

"Exactly," the vet replied, relieved that we understood.

More silence. Then my vicious, cruel wife started to giggle.

And giggle. And then even laugh loudly.

Tears were now running down her face. "It's just ... that ...I'm picturing you pulling on its . . . its . . . teeny little . . ."

She gasped for more air to bellow in laughter once more.

"That's enough," I warned. We thanked the vet and hurriedly bundled the lizard and our son back into the car. He was glad everything was going to be okay.

"I know Ernie's really thankful for what you did, Dad," he told me.

"Oh, you have NO idea," my wife agreed, collapsing with laughter.

Two lizards: $140.

One cage: $50.

Trip to the vet: $30.

Memory of your husband pulling on a lizard's winkie:

Priceless!

Moral of the story: Pay attention in biology class.

Lizards lay eggs!
</blockquote>
nightshade1972: (Default)
Originally posted by [livejournal.com profile] pickleboot at Repost: Help Us Support Planned Parenthood
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Originally posted by [livejournal.com profile] theljstaff at Help Us Support Planned Parenthood


Join us in standing up for reproductive health and education. Planned Parenthood, the organization that delivers reproductive health care, sex education and information to millions of people worldwide, has come under fire in the U.S. lately, with many politicians on both state and federal level seeking to end funding (and in a few cases succeeding).

During the month of May, you can send a specially designed Planned Parenthood vgift to your friends to help support this cause. (And if you need someone to send it to, [livejournal.com profile] frank is always happy to receive gifts!) There are three variations ($1, $5 and $10) for you to choose from, but they'd all look good on your profile when your friends know that you stand by something so important.

                    

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Dammit

Apr. 23rd, 2012 09:16 pm
nightshade1972: (Default)
Well, fuck.

Saw the new neurosurgeon today. He had a look at my old scans (from barely a year ago). Unlike my neurologist, who took the word of the radiologist, who said I showed "slight arthritis" in my neck area but nothing more serious, the neurosurgeon thinks I have a syringomyelia which might require surgery on the Chiari malformation. They're gonna schedule me for a new neck/spine MRI, and we'll see where that goes.

Any good thoughts would be greatly appreciated. Thanks!

Grr!!

Apr. 16th, 2012 11:40 am
nightshade1972: (Default)
Jesus H motherfucking christ on a goddamn silverplated popsicle stick!

Ever since I discovered that my former neurosurgeon relocated to Colorado without notifying me, I've been trying to find a new neurosurgeon.  We were told that a specific doctor had taken over my guy's pts when my guy left town.  I've been trying ever since to get an appt with the new guy.

Hubby has most of this week off, so I tried to call to set up an appt last week.  They didn't get back to me until today.

"Do you have an aneurysm?" No.

"Is this an emergency situation?" No.  For chrissake, if it was, I'd be calling 911, you idiot!

"Are you an established pt of his?" Not exactly...I explain the situation.

"Well, in that case, he's really not interested in seeing new pts.  He feels that 'getting to know you' visits take too much time away from the trauma pts, and his established pts."

*Headdesk*

As I tried to explain, I'd much rather have an established relationship with a neurosurgeon, than spontaneously go into shunt failure (which is usually how that happens, it's not a gradual process), show up at the ER, and hope that whoever the neuro on call is knows how to do shunt revisions. 

And that whole "trauma" statement was just weird.  When I'm in full-blown shunt failure, I'm either passed out, or very close to it.  Which is to say, in no condition to give a clear and concise medical history.  Much as I love my husband, he's only known me 8.5 years, he's not gonna be able to fill in all the blanks in that kind of situation.  So the new guy only wants to see me in an emergency, when I can't talk to him? Huh?

No dice, he's still not interested.  Oh well.  Guess I can cross him off my list....

ETA:  Thanks to everyone who replied, for giving me some really good suggestions.  I emailed New Guy's office directly, and I also emailed Old Guy's office in Colorado.  I explained what New Guy's office had told me about him not wanting to accept new pts.  I emailed Old Guy's office basically asking them if they might be willing/able to grease the skids a little.  New Guy's office emailed me this morning (Tues 4/17), and I just got off the phone with Old Guy's office in Colorado.  I must say, I'm very impressed that Old Guy's office actually *called*.  Old Guy is apparently out of town, but the lady I spoke to, his PA, promised that she'd discuss this with him when he got back, and they'd try to send me some local recommendations.  When New Guy's office responded to my email, they basically said "we're sorry you had difficulty, we're gonna tell all this to New Guy's office manager to see how she wants to handle it".  So, progress, of a sort...

ETA 2:  Just got off the phone with the office manager at New Guy's office.  She apologized profusely for what I'd been told.  She said New Guy is certainly willing and able to see Old Guy's pts, and totally understands the need for a "getting to know you" visit before an emergency happens.  I have an appt for this Mon (4/23).
nightshade1972: (Default)
We've had a very nice weekend with several of hubby's friends.  I knew it was too good to last...

The Maternal Unit called (a call which I stupidly returned, later) while we were out to dinner.  She cloaked the call in the guise of being worried about my MIL.  Apparently when they last spoke, my MIL told her she was back to taking all her old meds, which is precisely what the docs at both the hospital and the skilled-care place told her *not* to do.

*Headdesk*

We saw my inlaws yesterday.  My MIL started off on some tangent about how I was supposed to take home some  tupperware or something that my mother had apparently brought over (filled with food of some sort, one assumes) when they last got together.  They both had the rather strange idea that I'm apparently supposed to be the conduit to allow for the return of the dishes to the Maternal Unit.  I told my MIL no, the Maternal Unit's a big girl.  If she wants her stuff back, she knows where to find it.  There's absolutely no reason to get me involved, particularly since, as I've noted here many times, I have no desire to ever see or speak to the Maternal Unit again.

So anyway, the call.  The Maternal Unit gets over her concern for my MIL pretty quickly, and asks me if I have her dishes.  I told her my MIL still had them, and if she wanted them back that's where she'd find them.  Horrified, she says "But one of the dishes I gave them was good Corningware! What if I never get that back?"  I said "Not my problem...".  It really is kinda pathetic that the Maternal Unit thinks all she has to do is offer to buy me lunch and I'll jump at the chance to bask in her presence.  I will admit, on occasion that's useful, like if there's a mall trip involved.  But to needlessly involve me over some dishes she's more than capable of retrieving on her own? Um, no.

At least it appears that the "dry spells" between her contacting me/getting pissed off/contacting me again are getting longer each time.  The bitch has a pretty steep learning curve, for sure, but at least it's there.
nightshade1972: (Default)
[Error: unknown template qotd]The Spitz-Holter shunt:

http://www.uh.edu/engines/epi2582.htm

Without it, I wouldn't be alive today.
nightshade1972: (Default)
[Error: unknown template qotd]"One Voice", Barry Manilow
"Home Sweet Home", Motley Crue
"Separate Lives", Marilyn Martin/Phil Collins
"It Might Be You", Stephen Bishop
"On The Loose", Saga

I trust that's a sufficiently varied list....

:-)

Hooray!

Mar. 27th, 2012 07:45 pm
nightshade1972: (Default)
Good news:  My MIL is finally out of the hospital.  Better news: They took her off the Coumadin (blood thinner) when she went in the hospital Fri, and she's been more alert and lucid over the last coupla days than she has been over the last coupla years.  However, even though she's out of the regular hospital, she's going to be in a step-down skilled nursing facility for the next two weeks.  She has a PICC line in place now, and rather than depend on my inlaws to remember how to do it right (which Medicare won't pay for anyway), she'll be in the skilled-care facility for treatment.
nightshade1972: (Default)
[Error: unknown template qotd]Relatively few, actually.  I never dated in HS.  I dated a bunch of guys my freshman year of college, and then only sporadically after that.  The longest relationship I ever had, prior to meeting my husband, was one of the college relationships.  That one lasted about six months, until I was foolish enough to mention "the M-word", then he dropped me like a hot potato.  I'm 40 now.  I met my husband just prior to turning 32.  As I said, I didn't actually start dating until college, and I'd say altogether over the roughly 15 years between college and meeting my husband, I dated probably less than a dozen guys. 

A big part of that is the fact I'm disabled and can't drive.  Nobody wants a crip, especially one who's dependent on others to get around.  You know how they always tell you to use your own transportation, and meet in a public place so that if things don't go well, you can bail safely and on your own? Not so much when you live in a city with poor public transportation, you don't have your own, and you can't drive.  I always had the first meeting at my place--I felt a lot safer kicking someone out of my own place, if I had to, than going to the apartment/house of some guy I just met, especially if they didn't live on or near a bus route.
nightshade1972: (Default)
Originally posted by [livejournal.com profile] midknight_starr at Help Me to help others

Help Me to help others by ~RoseDragonGuardian92 on deviantART

This is from my son, Jonathan, for Hydrocephalus Awareness.
nightshade1972: (Default)
[Error: unknown template qotd]Growing up in a very dysfunctional household has taught me how not to behave, and how to be a better person.

Having a congenital disability has taught me that children can be very cruel.  Many adults are no better.  It taught me self-reliance from a fairly young age.

Meeting my husband has definitely changed me for the better.  Hubby/inlaws have taught me that I'm worthy of unconditional love and support.  The last 8.5 yrs have been the happiest years of my life.
nightshade1972: (Default)
To Whom It May Concern:

My husband and I live in Houston.  We traveled to Corpus Christi this past weekend (Sat/Sun 3/17-3/18) to celebrate our seventh wedding anniversary.  As part of our trip, we visited your aquarium.

I am neurologically handicapped, and must use a walker for long excursions.  My walker is the "deluxe" type, with a fold out seat, handbrakes and wire storage basket.  I had my walker with me when we visited the aquarium.

My husband and I enjoyed the trip itself very much.  Your aquarium is a lovely facility, and we learned a lot about local and exotic marine life while we were there.  However...

I needed to use the restroom while at your facility.  The restroom was clearly marked as "handicapped accessible".  While the *main* entrance to the restroom was wide enough to accomodate a walker or wheelchair, the stall door was not.  I went into the restroom, and was confronted by a long row of sinks, a long row of stalls, and a very narrow corridor inbetween.  I had a great deal of difficulty navigating between the women coming out of the stalls and the women using the sinks.  Then, I looked to see which stall was the "accessible" stall.  I know from experience it's usually the stall at the end, but the width of the stall at the end of the row was not significantly wider than the width of the average restroom stall.  I literally had to back into the stall, keeping my walker in front of me.  Then I had to reach over my walker to shut and lock the stall door--there was no room for me to collapse my walker, and nowhere for me to store it even if I could.

Fortunately I do still have some mobility in my lower legs.  But--what if I didn't?  If I'd been completely paralyzed from the waist down, and unable to move my legs, there would have been no way for me to back into the stall.  There would have been nowhere for me to store a wheelchair.  And, even though the stall did have metal bars running along both sides of the stall from front to back, if I'm totally paralyzed and trying to move more than a hundred pounds of near-dead weight with just my arms, how am I supposed to get out of the chair, turn myself around, undress myself, sit on the toilet and take care of my needs without assistance?

I know your architects/designers didn't have malicious intent when the bathroom plans were designed and implemented.  But it's not enough that only the main bathroom entrance be wide enough.  The stall door has to be wide enough to allow a wheelchair or walker through, and the stall itself has to be wide enough to allow for a walker or wheelchair's turning radius.  That's what independent living is all about.  Not everyone can afford an aide, and not everyone wants to ask a friend or relative for help with basic needs.  Taking away a handicapped person's right to enjoy a public facility to the same extent an able-bodied person can is taking away their dignity.

Thank you for your time, and have a pleasant day
nightshade1972: (Default)
I have been informed, via Facebook (to which I crossposted my last entry), that "my reaction to the comment was 40 times worse" than the original comment about how the desire to become engaged equates to being "brain damaged".  The person who originally made the "engagement = brain damaged" comment "liked" that response. 

I may have to rethink my position about considering either of them friends, and about my thinking the original offender wasn't necessarily *trying* to be an asshole, his statement just came across that way.  Both of these alleged gentlemen have known me for pretty much the entire 15 years I've had an online presence.  It's not hard to see that, on Facebook, the vast majority of groups or pages I belong to relate to hydrocephalus.  I do not, therefore, understand why it's so difficult for even my non-disabled friends to see why I might find comments like that so hurtful.

The vast majority of my able-bodied friends are incredibly nurturing and supportive, for which I owe them a debt of gratitude I can never come close to repaying.  That's why it hurts just that much more when two of the people whom I thought were my friends want to drag out the "it's just words, grow a thicker skin" argument.  Why do I need to learn to be less sensitive, when it was your lack of sensitivity in the first place which caused me to get upset?
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