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.

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! :-)

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.

Originally posted by pickleboot at Repost: Help Us Support Planned Parenthood

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).

[Error: unknown template qotd]The Spitz-Holter shunt:

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

Without it, I wouldn't be alive today.

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.

Originally posted by midknight_starr at Help Me to help others

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