Friday, December 21, 2007

Letter to my gyn

Last Friday my gyn called me at home. He tends to call back patients later anyway, but this was late, around 8pm. We talked for over 10 minutes and said a lot to each other. He is an incredibly sweet and gentle man and I think it honestly hurt him when I stopped seeing him.

I also read the letter to Debbie and it blew her away. We haven't really talked much about it all, just kind of left it alone, so much of what I said was a surprise. We haven't talked about it since, but I think the letter says quite enough.


Dear Dr L,

Of course after we hung up the other day I wanted to say more. Why change now?

One reason why I started seeing Dr. P may seem stupid now but it is what it is. After talking to several friends, I realized I had never seen a female gyn. I'd always seen men. As a staunch feminist this seemed strange to me and I wanted to see a woman, just to experience the difference, if any, in care, understanding, or connection. We have had a long, difficult and trusting history but yet I wanted a change. In retrospect, perhaps it was a step away from the fertility process and pain of loss. For whatever reasons, at the time it seemed right. Now it seems silly or escapist, but hey, hindsight being what it is. I also had what perhaps is an unrealistic fear, believing that when I mentioned hysterectomy that you'd somehow try to talk me out of it. Yes, it is an absolute finality to my fertility journey, the last concrete vestige of the process and there’s absolutely no turning back. I do recognize that aspect of it and have and will continue to explore it emotionally and psychologically. At this point, it’s less about that and more a matter of I'm not using it, its causing me pain, and I've got fucking softballs growing. If I wait until menopause, at this rate of growth, they'll be basketball size and excruciating.

And yes, as I said on the phone, a big part of it was scheduling. As you know, my schedule can rival any resident's and is unpredictable to say the least. I generally try to see all my doctors or clinicians on a catch-as-catch-can basis. For obvious reasons, it doesn't always work.

I really do appreciate and treasure the relationship and trust we've developed over the years and it did feel odd seeing someone else. There are not many doctors who will cry with their patients. There was only one time that I really felt uncomfortable, and that was sometime after my second miscarriage. I had said we decided to stop and move on and you said that we weren't done, that I'd be back. It almost felt like you were trying to convince me to continue, not respecting our choice. That angered me. Maybe it was your experience talking, knowing that we would eventually get back to the process, but at the time, I pissed me off. I should have said something then but my grief, anger or whatever prevented me from it.

Naturally I wish circumstances turned out differently and I were holding my child, but I'm not and I'm really ok with it. For whatever the reasons, whomever or whatever made that ultimate decision, it turned out the way it was supposed to. It took a lot for me to reach that acceptance, but I'm there and it’s ok. As much as I can be right now, I’m at peace with it all. I also sincerely want to thank you for all your kindness, caring and support during those years. It meant and means a lot to me. You are one of true treasures in the vast sea of clinicians.

I look forward to our continued professional relationship and whatever friendship may develop in the process.

The date

I finally have a date for my surgery - February 7th. Pass the fentanyl.

Oh, and I figured out that since I'm a lesbian, they're the size of softballs, not oranges.

that is all

Saturday, December 15, 2007

Absolute

It's official. Any lingering thoughts or fleeting ideas I may have had about having a baby are completely, finally and absolutely no longer an option.

The hysterectomy will be the end of January. Just waiting for a call from the woman in the GYN office who does procedure scheduling.

The past few months have been much worse than usual in terms of period pain. I've always bled like a sonofabitch, a box of tampons plus a dozen or more pads a month, so that wasn't new, but the pain that felt like my ovary was being twisted was a new sensation. So I went to the GYN. I was due for my annual anyway. She said my uterus was quite enlarged and wanted to to an SIS, or saline injected/introduced sonogram to see the details of my fibroids. I've known they were there for years, just basically ignored them.

The tech did the initial ultrasound and then the doc came in. I just about jumped off the table when she inserted the speculum. She apologized, saying it was larger than usual for the test. Larger than usual?! It felt like a fucking spatula! Then she got a smaller one and proceded to dig around to try and get a good angle of my cervix to insert the catheter. After a few tries, she said my uterus is so enlarged and my cervix so high as a result, that there's no need to continue to cause me pain (thank you). She wasn't going to get significantly more information from the SIS that she didn't already have from the ultrasound. So I cleaned up, got dressed and went upstairs to her office.

I have two very large fibroids, 8.7 and 9.8cm, roughly the size of oranges, that are causing most of my pain. They have also apparently nearly doubled in size in 2 years. Not good. Fibroids do shrink after menopause, but at 42, I have another 10 or so years to go. By that time and at this rate of growth, I'll have basketballs. Time to go.

We discussed surgery options: whether to leave my cervix or not, abdominal vs vaginal, etc. If my cervix is left, I will continue to need pap tests, but pretty infrequently. It also means that some supporting ligaments can be left - much better for supporting the pelvic floor. The downside is that it pretty much guarantees an abdominal procedure and a much longer recovery time. If it's done vaginally, the cervix almost certainly has to go, but the recovery time is much less. With the size of my fibroids she's pretty sure it will have to be abdominal surgery but she's willing to try LAVH, laparoscopically assisted vaginal hysterectomy. If it's done that way, the fibroids and uterus will have to be taken out in pieces, probably meaning a longer time under anesthesia. Yes, unless she sees something heinous, she plans on leaving my ovaries. I don't want instant menopause, thankyouverymuch.

I don't really have the belief that my womanhood is tied to my uterus, so that's not really an issue. There's also a relief of sorts that, despite knowing my motherhood journey was over 2 years ago, I still had fleeting fantasies of "what if". Now that will be absolutely not possible. I think my biggest issue right now is not really comprehending the scope and enormity of this surgery. I've had plenty of surgeries over the years, but none major enough to require a hospital stay since I was 11 and had my appendix out. I have to admit, there's a part of me almost looking forward to the dilaudid and percocet, but this is major shit, man! Scared? Yeah, I think I if I weren't I'd be dead or stupid. But I'm also looking forward to not having this monthly pain, not spending money on tampons and pads and the undeniable grossness of the bleeding.

With any luck, I can also find a way to fly to FL and visit my sister and some friends during the last week or so of recovery. After 3 or 4 weeks at home, I'll be desperate enough to do anything.

Monday, October 22, 2007

Inspiration

Apparently, I'm an inspiration when I go shopping. I don't know why.

I'm not ending world hunger, negotiating peace in the Middle East, curing diseases.

I'm just shopping. For dog food, mostly. Not inspirational in my book.

I had gotten a short cart when I got into the store. Not technically an accessible one, but good enough. I did my shopping like anyone would, putting items into the cart and bringing them to the check-out. On my way to the check-out, a woman with a young kid stops me and tells me how wonderful I am that I was able to maneuver the cart. I'm thinking it's fucking high school physics , lady! It's not that hard to push a shopping cart from a wheelchair.

I just smiled and moved on.

Inspiration, my ass.

Context is Everything

I've gotten into the routine of making the dogs' food on Sundays. I'm not sure why, probably because I can usually stay home all day, but it's become a routine. I had put off buying most of the ingredients until yesterday, so I spent a good hour shopping. First place I went, Stews, was crowded as hell. It always is on weekends, but since I ask the butcher for free off-cuts and scraps, the weekends tend to have good scraps, so I suck it up and deal.

So I'm walking through the store and I see this guy that I know I know. I just can't place where I know him from. There's a mutual spark of recognition, so I know it's not just me. We shake hands, do the usual "hi, how are you's", and move on. He's with his wife. Later on we see each other and he grabs my arm, commenting on how strong I must be. I flex and show off. Near the end of the Stews cattle drive (I hate the layout of their stores), near the sushi fridge, we see each other again. I still can't place where the hell I know him from and it's driving me nuts. I KNOW I should know him, dammit! I start a conversation about the sushi, then finally ask where we know each other from. He simply says, "the hospital".

Ok, great. I regularly work in 20 different hospitals. Can he be a little more specific!? I just smile, and say something like, "oh right".

We part ways and as I see he and his wife on another check-out line, it occurs to me...the next time I see my gynecologist, I should bring him eel sushi.

It's all about the context, folks.

Monday, July 16, 2007

Snorkeling

I've inherited (earned?) the right to use a CPAP. I had a sleep study done about two months ago and it found that while I have mild sleep apnea, I snore like a fucking buzzsaw.

This was not news to either Debbie or Bridget, who usually rooms with me at conferences.

The combination of the two, apnea and snoring, mean I arouse myself out of sleep at least 15 times/hour, enough to earn me a CPAP machine. Level 12, for those who know.

It's roughly like sleeping with a vacuum hose attached to your face. My sister calls it a snorkel. Apparently my brother-in-law opted for the surgical correction, something he regrets and tries to convince anyone he can NOT to have.

It feels fucking weird. You can't open your mouth to talk, even breathe, because the forced air that's meant for your nose (I have a nasal mask, not full face), rushes out of your mouth and aside from the odd feeling, it makes talking nearly impossible. I'm sure more experienced CPAP users can have complete conversations while it's running, but this is my first week. No machine can shut me up for long, though.

Debbie's first comment the morning after my first night, "Quiet night."
I simply replied, "You're welcome."

Complaints and weirdness aside, I have never slept better in my life. I actually wake up feeling rested, something I haven't truly felt in years. I'm tired at times, but I know it's from staying up late, it's a different kind of tired, and not feeling physically and mentally exhausted for no tangible reason. One cup of coffee actually wakes me up, not the 2 or 3 or more that I tended to chug during the day.

Long live the vacuum hose.

Sunday, July 08, 2007

SF Pride

Can I just say that I LOVE San Francisco? I mean totally love the place. If I could afford to live there, I'd be very happy, although I'm certain nearly all of my inhibitions and decorum would be shot to hell. Debbie, on the other hand, Ms. Puritanical New England, would be shitting a brick every 5 seconds.

After a nightmare experience with JetScrew (JetBlue) at JFK airport and a 6 hour non-stop flight, I landed at SFO at around 11:30 in the morning. Corbett had arranged an airport van to bring me to her house, where Robin and her PCA were packing to leave to go home to Denver after a year in Berkeley. Not a half hour after arriving, we all piled into Corbett's van and drove Robin and her PCA to Oakland airport, said a tearful goodbye, and Corb and I just hung out the rest of the day. She was emotionally drained and I was exhausted from traveling. We had a great dinner at a hole-in-the-wall restaurant under a bridge and called it an early night.

The next day was the SF Pride parade and festival. We both planned to be up early and head into the city, but Corb slept late, I didn't wake her up, and we got there towards the end of the parade. Oh well. The festival was incredible enough. We met up with her friend/ex Maria and wandered around a bit, looking at booths, and spent a good deal of money. One place was doing airbrush temporary tattoos and as we were looking at the designs and deciding what to get, another long time friend, N, and her partner M came by. All but M got tats. I had one of a pair of lips on my left breast and since I was in SF at pride, egged on by my friends, I simply left my shirt off for the rest of the day, at least until it got cooler. We had somehow inherited a few strands of parade beads and Corbett managed to put a string through and around my bra so it outlined my breast. She, of course, fixed it every time it fell off.

N and M are into S&M, something I'm definitely NOT into, but don't hold it against anyone who is...their life and choices and I can't, nor do I want to, dictate what consenting adults do. At SF Pride, there's several side streets that have been designated for different purposes or focuses. There's Women's, Men's, Family, etc and Leather Alley. Leather Alley is very well marked and allows people who might be triggered by the materials enough warning to avoid the area. Corb knows my history and was very concerned I might be triggered, but I'm not. I don't like it, but it doesn't trigger me. Well, N and M had expected and planned to demonstrate/perform crip S&M, but by the time we arrived, they were already tearing down the fenced and visually blocked area that they would have used. Since we had all been talking about it, they were quite hot and horny and nothing was going to stop them from getting some. They wanted to use my hotel room, but after I refused, saying I had to teach the employees the next day and who knows what they might have heard, we found a small alley/street and went behind a dumpster. Without the details, let me just say it was quite the education. Corbett, in an effort to not get too horny, make me more comfortable, whatever, was explaining everything they were doing and why and what she would do if she knew M and it was safe to get involved.

Not long afterwards, they all went home and I went back to my hotel room and, well, you gotta know I masturbated.

Inhibitions, decorum, shot to bloody hell. Welcome to San Francisco.

Clearwater

Well, the Clearwater Revival went off with a few hitches, always does. I lost a few years off my life on this one.

We didn't have a confirmation of wheelchairs until the TUESDAY before Revival. That's right, 4 days before the festival I finally knew we had wheelchairs to loan, a MAJOR access issue for this festival. I found a few grey hairs and I swear it's because of this.

The festival itself was relatively smooth. The usual problems but nothing so out of the ordinary it couldn't be handled. In a new twist, one of my volunteers who was under 18 had a seizure and the paramedics wanted to bring her to the hospital. She's 16 and refused, but because she's underage, they had to have her guardian make the final decision. It took at least a half an hour to locate her guardian. She ended up not going and all was well.

The festival itself was fantastic. The weather held up beautifully and we actually broke the box office record. I don't know if that record is number of tickets sold or cash income, but either way, hot shit. We'll find out the numbers and whatnot at the post-mortem meeting, whenever that is.

As happens every year, I was able to connect with long time friends and meet many more. This year, volunteer hospitality was made even more hospitable when a friend of theirs brought a home made bar and proceded to make bar stools out of scrap picnic tables from the stump dump. The beer she was a flowin' and the weed she was a smokin'. I also finally introduced Brenda from Brahalla, the unofficial volunteer hospitality hang-out to the official volunteer hospitality crew. They're planning to collaborate next year.

Perhaps the best news is that the Board is FINALLY getting fed up with the festival director. Sure he may bring in a crowd, but he's an arrogant, self-important, takes-the-credit-for-everything prick. He even takes the credit for the ENTIRE festival. Including coordinators, there are roughly 900 volunteers who work their asses of prior to and during the festival, but he, of course, made it all happen. Yeah, answer your fucking radio during the weekend and we'll talk about how much you do.

Every once in a while, I'll actually try to talk to him as a person. I've learned that he's actually Mexican-American, grew up in CA and was the dark-haired immigrant kid that everyone picked on. He tried very hard to fit into CA world and American culture and basically got stuck between two cultures, not really fitting into either. Ok, so decent human being, just has a few issues. Then WHAM! Just when you think he's made progress towards being human, he shows his true colors and he's a prick again. I think I'm sticking with the "he's really a fucking prick" attitude from now on.

There's several hundred people, mostly coordinators and long-timers who are just waiting for the Board to finally axe the asshole. Party at my house when they do.

Sunday, May 27, 2007

Transitions

Wow, life is changing fast. Ok, so it's not exactly MY life that's changing, but the changes that other people are making in their lives are impacting mine. Big time.

On Friday, my boss confirmed the rumors that he's accepted another job in another state. I've never posted about my boss because there's nothing to complain about. He's amazing. No, not perfect, but in the book of "World's Greatest Bosses", he's right there on page one. I have an incredible amount of respect for him as an interpreter, a colleague, a friend, a boss and as a human being. He will be sorely missed.

It's only been in the last couple of years, really since the 2005 San Antonio RID conference, that I've become closer to he and his wife. I think in San Antonio, he was really able to relax, more than in Chicago, and we got to know each other on a more personal level. Too bad it was so damn late. His absence will definitely leave a huge hole in the agency and community.

My concern, and it's shared with nearly everyone in the department is, what's going to happen next? Who will take his position and how will it impact us, the Deaf community, the department, agency, etc...? We're all pretty nervous. He's offered to help in the search and transition process, but he's only here for the next 7 weeks. We've been wracking our brains trying to think of who can fit into that position and so far, there's nobody in CT who can or would. I know ultimately it will take time and we'll have to wait and see, but in the meantime, yikes, it's scary.

The other major transition not actually happening to us is the moving of our good friends to Puerto Rico. It's their dream retirement and I'm thrilled for them, but wow, what a loss to the area. Rick and Nelly have been integral parts of the area community for over 35 years. They were both teachers, professionally and in their hearts. They are perfect examples of Ghandi's quote, "Be the change you wish to see in the world".

They are the kind of people that you wish you met when you were younger. You never quite had enough time with them, learning from them, appreciating the life they've shown you. I've known Rick for nearly 10 years, but it's only been the last 3 0r 4 that I've gotten to really know he and Nelly. Too damn late.

Nelly is a native Puerto Rican and now it's time for their lives to return to Puerto Rico. They bought acreage in a deeply forrested area of the island and are building an ecologically responsible, accessible home and guest house. Already they've been talking to area farmers who are complaining of being sick from all the chemicals and fertilizers. They're working towards educating them on organic/natural farming and hope to change their practices, ultimately making the island and surrounding ocean healthier.

Sunday, May 20, 2007

5/16/88

Happy Anniversary of sorts to me. Ok, so it's 4 days late, but when the fuck have I done anything on time?

May 16, 1988 was when I started my new life as a woman with a disability. I became a crip, politically aware and active in the disability world, later.

I won't go into details, if you want them, ask, it's too nice a day to be sitting inside blogging and the grass needs mowing. Long story short, it involves youth, bad decisions, a fucked up worker's comp system and malpractice.

And here I am. A crip lesbian living her life, mowing the lawn, yelling at the dogs to shut up, and blogging when I get around to it.

Not such a bad deal.

Saturday, May 12, 2007

SF Part 2

Where did we leave off, boys and girls?

Friday, after saying goodbye to Meecha before she went to school, Corb and I hit the town, so to speak. It was an absolutely gorgeous day, with bright sunshine and high 60's-mid 70's. Not a cloud in the sky. Completely atypical SF. First we met a mutual friend, Alison, for breakfast in Berkeley. Alison has been at UC Berkeley on a fellowship which is running out at the end of the semester, right about now, actually. I met Alison at the QueerDisability conference in 2002. She was one of the organizers along with Corbett and a handful of others that I have developed friendships with.

After breakfast, we headed into the city and parked at Fisherman's Wharf . I never thought of myself as a typical tourist and tend to avoid all the tourist traps and usual places. I've always liked the side roads, alleys and places that draw more local people. I just sit and watch, listen and learn. For whatever reason, this day was different. We didn't do everything tourist, but it was definitely NOT my typical avoidance of said traps. We hopped on a ferry to Tiburon and Sausalito, strolling around each place for a while and enjoying the sights. Corbett found something she'd been looking for in each place - a bed/lap table at a thrift store and a gadget with clips and magnifying glass for working on jewelry. After we got back into the city, we walked around for a while, finding a museum dedicated to old, some VERY old, mechanical toys and games. You know, the kind where you put in a quarter, squeeze a handle, and it tells you how sexy you are...or you put in the quarter and turn a handle to see a flip-card movie. We played skee-ball, each winning one game...basically we had a blast just being silly. Dinner was Joe's Crab Shack (it was crab season YUM) and afterwards, we headed to visit Laura and Robin, other mutual friends and organizers of the queer disability conference. They, too, are leaving the Bay area soon and moving back to Colorado where they can afford to live. Robin is an attorney and has been looking for a job for months. She's got CP and NOBODY is willing to hire her. Sure, she can get a shitty job in an ILC (independent living center), but she's done that before and she's a fucking ATTORNEY! Why should she have to settle for a shit job at minimum wage just because she's a crip? Bullshit. It's not fucking fair.

We got back to Corbett's house late and she had to spend time on the phone arguing with the nursing home that a friend is in. The friend was just transferred from a hospital where she was on high doses of pain meds, all approved and necessary, and the nursing home wasn't giving her the prescribed dose, saying she's drug seeking. Again, BULLSHIT. Corbett has power of attorney for this friend and it was an ordeal talking to the friend and the nursing home, trying to get a straight answer and proper meds. It finally worked itself out, but oy!

Next morning the hotel had arranged for a town car to pick me up from her house and take me to the airport...I can get used to this. The flights home were better - I slept for most of it - and I got home around 11:30PM.



For those of you who don't know me, I'm on the right, Corbett's on the left. For the record, the light is on the word "Wild".

Sunday, May 06, 2007

SF, blow by blow, part one.

I suppose it's about time I post about the trip to SF itself and fill in the details. Lots of details.

After my too long flight and being stuck between two military folks... no Estelle, I didn't back down from a fight, just chose to pick my battles. Kinda hard to run when you're stuck in a recycled beer can 34,000 feet above the planet...I arrived at the hotel around 2AM. I was up by 7:30AM (thank you eastern time) and chugging down Starfucks in the lobby by 9AM. My meeting with the Parc 55 wasn't until 1:00, so I tootled around about a 3-4 block area, taking in the sights and neighborhood. There's a great little park right across the street from the Marriott, completely accessible and with the requisite pigeons, fountains and homeless folks. Inside the park and on the perimeter there's a couple of small museums, art galleries and stores. Don't ask me what the name of it is, but I can picture it as a perfect place to go sit and un-conference when necessary.

Part of my wandering was to actually locate the Parc 55. I knew it had to be close, but I had no idea where it might be. I did find it fairly easily...leave the Marriott via the 4th St entrance, make a right and keep going until you find the Virgin...megastore...make a left and it's about 2 blocks. Just in case you wanted to know.

Anyway, after I found the Parc 55 I had plenty of time to kill. On the way, there's a small square, again, don't ask me the name, and one of the cable car lines ends there. Powell St. Something else I discovered - the homeless and hungry folks in a tourist town are pretty enterprising. Several hung around at the square and offered directions and help to anyone who looked like a tourist...for a price, of course. One guy offered to show me to a Walgreens and then pushed me up the hill to it. I gave him $2 for his efforts. I've been homeless, I know it sucks. Never begged, but if I had been in that situation longer, I may have.

There were a couple of guys shining shoes in front of the Virgin store and I gave them my boots to shine. Damn they came out good. The guy who shined my boots was nice enough, even if he did have the appliance repairman's butt crack thing happening. The other guy spent more time watching the women walk by than working. He probably gave spit-shines from all the drool.

After my 1:00 meeting, I headed back to the Marriott and just chilled. I went up to their bar on the top floor - the view of the city and the bay is amazing - and then back to my room. I had made plans to have dinner with a friend from Clearwater - we discovered that we would be in SF and at the SAME HOTEL at the same time so we made plans to meet. We had a mediocre Thai dinner and she turned in early. I headed for the bar. What a night. Let's just say that computer geeks work hard and party harder. I was wandering around the bar, looking for a place to land, and all of a sudden there's a camera flash in my face. WTF?! I start wandering towards it, curious, and there's 3 very drunk computer techies having a great evening. Apparently those 3 were what was left over...a couple of others had already gotten way past drunk and left. The guy with the camera offered to buy me a drink, so sure, I'll take free booze. I spent the rest of the evening with them, a couple of others from their group coming and going, and they bought me drinks all night. We had some interesting conversations about culture, Deaf issues, interpreting and religion/spirituality. They were surprisingly lucid, although I'm sure they looked at the pictures the next day and have no fucking idea who the chick in the wheelchair is.

The next day, way too early at 7:15, I had a meeting with the conference co-chair. It was pretty light chat and we discovered our fathers are buried in the same cemetery in NY, for what it's worth. Then I had a 9:00 meeting with several managers from the Marriott. That went well and I was done by 11:00. After the meeting, my friend Corbett, who lives in the East Bay and who I haven't seen for a couple of years, picked me up. I had planned to stay with her and her daughter until I left Saturday morning. No need to take advantage of the Marriott's hospitality.

That afternoon, after a couple of shuffles with vans and drivers, Corb introduced me to power soccer. What a blast! Corbett is on the national team and she coaches a youth team in the bay area. Let me back up a tad and tell you about our trip to the gym. We had picked up her friend and teammate Karyn and drove Karyn's van to the gym. On the way, all of a sudden, there's no brakes. Pedal to the floor. In rush hour Bay area traffic. Fuck. Corb does a great job of not hitting anyone and giving plenty of room between her and the guy in front. Right about that time, Corb and I both notice a burning smell. Fuck. We take it slowly and when we get to the gym, Karyn, automotively clueless and champion worry-wart, goes in to start the kids' practice and we check out the van. I look at the brake fluid, check for leaks...everything I can think of. Finally Corb comes out from the driver's side and informs me that we just drove 30 minutes with the parking brake on! No idiot light, that would have been too obvious. Two hours later the brakes have cooled and are perfectly fine. Well, a bit worn down but they work. Power soccer itself, well, I was supposed to be assisting Corb and Karyn, laying low (everyone but me was in a power chair and had guards on the front of their chairs) and just trying not to get hurt. I didn't get hurt but my competitive side definitely came out. Sorry kids.

That night, after dropping Karyn off, we had dinner at yet another Thai place in Berkeley. Much better food. We then hopped the BART and headed for home.

Episode 2 later...

Sunday, April 29, 2007

Site visit update

Wow, what a month it's been.

I just got back from SF yesterday and should have updated everyone before this but here goes...

Two weeks before my expected awareness training, I get a call from the contact at the Marriott saying they'd prefer it to be only a site visit and have the training be done closer to the conference itself, perhaps June. Great. I already had plane tickets and couldn't really change them. This also meant that Marriott shouldn't be covering my expenses, that RID should be. Marriott will cover everything for the training but the site visit is RID's responsibility. Makes sense, but where the fuck will the money come from? Interpreters don't rake in the bucks, folks. Chris at the Marriott was really sweet and said that he could comp my room for the 2 nights needed. He probably would have comped the week, but I have friends out there that have been bugging me to visit and this was the perfect opportunity.

Now the other wrench: I had already talked with the executive director of RID, expecting this trip to be completely covered and he removed my expenses from their budget. He was going to comp my conference registration if I got Marriott to pay for this trip. Now I don't feel right about getting a free registration but also, who the fuck will be paying for this trip?! After some discussion, RID agreed to pay me $200 now and potentially up to $350, depending on how much revenue came in from the conference. Great, I may not get everything back, but at least it's not a total loss. Oh, and the comped registration was already in process so I couldn't stop that.

So I get out there, airport adventures included, more about that later, and arrive at the hotel around 2am. I was in bed and comatose by 2:30 then up around 7am so I could check out the city and take some time before my 1pm meeting with the second conference hotel. Meeting was fine but there was one minor glitch...there's NO flashing fire alarms in ANY public space or room, unless that room is designated as accessible. So what's the message, that Deaf people should burn? Good luck following the crowd and run like hell. There's supposedly a major renovation in the fall - true biz or placating me don't know - but that doesn't help us at all for August. Assholes.

The primary hotel is great, no real problems there, just some minor annoyances.

Now for the airport fun. Debbie insisted that I arrive at least 2 hours early. I know from experience that while everyone says to do that, when you're a crip, you usually get to the front of the line and you end up hanging around forever. Not worth the argument so I leave early. I get to LGA, not my preference of airport but it had the cheaper flight, and there's 2 massively armed military personnel standing in the hallway. I usually fly out of smaller airports and this is my first experience with seeing this. Yippee. Not feeling any safer, thank you very much.

At the gate, there's 4 guys from LGA expecting to help me onto the plane. Thanks, but I don't need it. I only need assistance with my bag and I crutch onto the plane, no aisle chair needed.

It gets better.

I'm seated in the first row and despite the fact that they like to have us crips board first, I don't plan to go in and wait and watch while everyone else boards, getting knocked in the arm and head by bags and having to stand up 2 more times when my neighbors get on. When I say I want to get on last or towards the end, 3 of the 4 guys get pissy, with one guy storming off in a huff. Excuse me? I'm supposed to kiss your ass because it's convenient for you to have me board now? Fuck you. It's not convenient for me. I read them the riot act as diplomatically as possible, saying I was sorry if it was inconvenient for them, but it's better for me if I board last. And no, I don't need you. You whiny overworked, underpaid brats can leave. They checked with me again, just covering their asses, and then they left, still pissy but I didn't care.

Once on the plane, it doesn't take more than 30 seconds to realize that I'm between 2 other military people on leave, one soon to be on his 4th tour in the Marines in Iraq, the other a medic. Great. Two thoughts crossed my mind: 1) if someone tries to jump the plane, we're safe. 2) This is a 5 hour flight, shoot me now. I watched TV and ignored 99% of the conversation, hoping to not speak my mind this once.

First layover in Denver proved how pathetic and expensive we are here. I bought a meal at McD's and it was CHEAPER than buying one here. Since when is airport food cheaper than home? This is scary.

The layover was over an hour longer than planned but at least we weren't stuck overnight. Marriott had sent a town car to pick me up. Not necessary but certainly appreciated. The driver was cool and we commiserated about hating Starbucks. The rest of the week will be in another post.

Saturday, March 31, 2007

Awareness training

San Fransisco here I come...blah blah blah with the song

As the chair of the access and welcoming committee, one of my tasks is to recommend someone or an agency to do the awareness training of the hotel staff prior to our conference. Well wouldn't ya know it...I do just that kind of training. While the hotel isn't required to use me, our contact at the hotel and I had already developed a rapport - there was a problem with getting an accessible room that had two double beds. Apparently crips aren't supposed to have friends, PCAs or other need to have 2 beds in their rooms. That was worked out nicely and in the process, I found an ally.

Turns out a very cool ally to have.

I'm doing the awareness training. Notice how I use the term "awareness" and not "sensitivity". You can't make someone sensitive to others' needs. They are or they aren't. You can, however, make someone aware of what someone might need, want or of their culture, and hope that that awareness leads to sensitivity. In any case, this training would normally cost at least several hundred bucks to $1,000 or more. What I'm doing instead, and in the process hoping to make connections with Marriott corporate, is to offer the training in exchange for travel, room and meals. That's right folks, I'm getting a free trip to SF. My only real costs will be the rental car to/from the airport here (cheaper than airport limo or risking parking in NYC), meals/snacks in the airports, and any fun stuff I do while there.

I'm also expecting to get my registration for the conference comped.

I spoke with the executive director of the organization a while back and he said that if I could get this trip paid for by Marriott, a significant savings for RID, he would comp my registration fee. I would have had to go to the hotel anyway for a site visit, hence the expense. Whether or not I did the training was up in the air until this past Thursday. The fact that this is the third time I'm on the access committee, second time chairing, and there's virtually NO benefit to us except a pat on the back and recognition in the program book, was also a factor.

With any luck, Marriott corporate will love me and hire/contract with me to do these same trainings around the country. Free travel and hotel stays...not such a bad deal.

westward ho....

Friday, March 16, 2007

180

~~ Sung to the tune of "Food, glorious food" from Oliver ~~

Snow, slippery snow
Ice, what are you good for?

Well I finally broke down and bought 4 new tires today. I've needed them for a couple of months, but the winter has been so mild it hasn't been an issue. Ok, so I've done more than my share of slipping and sliding during the 2 or 3 snow and ice events we've had, but it really hasn't been bad. A curb here, a snow bank there. My trusty Subaru outback has been wonderful, despite my obvious negligence.

Until today.

I was heading to work and took my eyes off the road for a split second (doesn't everyone say that?), and I started skidding. Big time. Thankfully the roads were pretty empty, because I slid into a couple of 90 degree turns - first right, then left, then right again - and then I spun around 180 degrees and ended up facing the opposite direction. Thankfully and oddly enough, I was really calm the whole time. When the car stopped, I very calmly drove to where I could safely turn back around and simply kept going. No fear, just focused on getting to work. I know, I'm nuts. Most logical people would have called the office and told them they weren't going. Nope, not me.

Also right then and there I decided to pay attention to the obvious message: STOP BEING SO FUCKING CHEAP AND GET NEW TIRES!

So when my client didn't show, not surprising, I called Town Fair Tire and was there as soon as possible. $632 and an hour later, I had 4 brand new tires, a full front and rear alignment, and a much safer car to drive. Understandably, I was a bit skittish driving home, but the car was fantastic. Amazing what happens when you're not a cheap asshole.

For the record and all those who will say I spun because I hit the brakes, didn't steer into the skid, etc - my foot was off the brake the entire time, I steered into the skid and at one point I even let go of the steering wheel and let the car do it's thing. No, that's not when I spun out. It actually stopped the skid. That or the inertia of the car.

Either way, I'm $632 poorer, but definitely wiser and safer.

Monday, March 12, 2007

Closing, take 2

We finally did it. The house is sold, papers signed, checks passed around. The closing finally went through without a hitch. Our lawyer kept his arrogant asshole side in check and their lawyer did some of his work and research to ensure it would actually be done. The fact that both parties really wanted this sale to go through helped a great deal. We were able to recognize that it was our lawyer who had the 'tude and made mistakes and their lawyer who was oh-so-picky and we could put all that shit aside and do what needed to be done.

So, FINISH! For you non-ASL using folks, that means done.

Saturday, March 10, 2007

Ahhhhh

This is the first weekend in nearly 2 months that I've had nothing to do. Ok, so I have yet to do my taxes and the house could use a good cleaning, but for the first time in nearly 2 months, I don't have to go to my SIL house and clean, pack or otherwise work.

I feel almost guilty. Almost.

I'm not sure what to do with myself. I've done abolutely nothing all day. I woke up late and spent a gorgeous day in the house. Rick came by and dropped off a handcycle that I plan to ride. Rick and I have tentative plans to run the NYC Marathon this year. He's done it several times, I've never done it.

We'll train when it gets warmer. Right now, however, that involves too much exercise on this glorious, lazy day.

Tuesday, March 06, 2007

and the asshole surfaces

After weeks of no contact and then third party contact telling us to go fuck ourselves, The SIL from hell shows up here at our house.

I'm getting ready to feed the dogs and there's a pounding on the front door. I knew Deb was going shopping so I figured she had her hands full of groceries and couldn't reach the bell. I didn't think twice and opened the door.

In walks stupid, asking what's going on, when she's going to get money and what's happening with storage. Fucking bitch. I should have thrown her out.

Without yelling, which could have turned violent - she's pretty fucked up and volatile - I told her we were pretty pissed that she didn't do a damn thing to help during the entire process, that she told us to go fuck ourselves (didn't deny it), and that her attitude, behavior and zero effort made everything that much harder. I also told her that Art, the guy we hired to do most of the cleaning, will probably charge her for packing and moving her shit, that we packed piss-soaked clothes because we were told by her to "pack everything". I told her that several pieces of furniture that she expected were in the dumpster because they either fell apart when they were moved or were so soaked with rat/mouse/cat piss that there was no way we were putting them in storage. I was pretty damn civil for what I should have said. For her part, she stood there and listened.

I also told her that she looks like shit, is angry and nasty and the only reason she's living in a cleaner environment is because she was forced to move, that if she wasn't forced, she'd still be living in squallor and filth and it's not normal. I told her about the women's center having free counseling and of a friend who offered the same free help. What she does with that information is up to her, but at least I put it out there. I want her to get the help, but I'm sure as hell not going to hold her hand for it. Christ, it's everything I can do not to tell her to go fuck herself and that she's made our lives a living hell.

I was good. I did my mitzvah for the day. Now can I go get a drink?

The closing that didn't

I hate lawyers. I really do. They all have their place in the world, my father was a lawyer, and I wouldn't be here without him, but ultimately, I hate them. They make the simplest things in life so fucking complicated.

The house was finally completely cleaned yesterday. Nothing left, floors laid bare, save the rest of the dust. The weekend was the final push of moving furniture and boxes to storage and cleaning (I'm still sore). Yesterday the absolute last of the moving and cleaning was done. We were supposed to go to closing today and have check in hand.

Then the lawyers stepped in.

Deb's parents had a lot of medical problems and not a lot of money. They let bills go to collections, leaving liens on the house. We knew this and planned to pay off as many as needed and get lien releases from all debtors. There was one bill where a small claims judgement was made in 1989 for $280. 1989, folks. Small claims statutes end after 10 years so it should have been written off. Despite the obviously small amount (including interest, not even $800) and the fact that the included court costs were $20 - practically guaranteeing it was small claims - the paper didn't say small claims, but Superior Court. A Superior Court judgement is open for 20 years.

Ok, so we need the lien release signed from the debtor. One problem. The company that won the settlement NO LONGER EXISTS. Therefore we couldn't get a lien release. The lawyer that represented them DIED 2 weeks ago. Despite a month of letters, faxes and phone calls, his firm never got back to our lawyer.

So we're sitting around the table, and after a lengthy phone conversation with their title company, the buyers' lawyer decides that since they plan to flip the house before fall, they can't go ahead with this sale with the lien on the house. Our lawyer pulls an asshole move and while talking to the buyers' title company, refuses to go ahead if they don't accept his wisdom that it's small claims and should be closed.

They walked away from the table pissed. We walked away from the table pissed. The real estate agent walked away pissed.

Yes, their lawyer is doing her job and protecting her clients. So is ours. Their lawyer is picky as hell, ours pulls an asshole power move and gets caught.

After they left, Deb went back in and somehow convinced our lawyer to dig deeper into the aforementioned closed company. Initially he didn't want to overstep the other dead lawyers boundary, but fuck, he should have done that after a month of no responses. In less than 10 minutes, he located one of the doctors that was part of the defunct company and agreed to pay him what was owed, theoretically resolving the entire issue. Deb thanked him. I told him I wish the phone calls had happened a half hour ago.

With any luck, we go back to the table before the end of the week and sign everything and BE DONE WITH IT.

I hate lawyers.

Friday, March 02, 2007

Maggie dog

My sweet Maggie, a dog everyone thinks is one of the sweetest dogs they've ever met, is in pain.

For the past couple of weeks she's been yelping occasionally when she takes a step. It's nothing I could see or feel, nothing that bothered her when I moved her front leg around, palpated her leg, shoulder, foot. Just the occasional yip of pain. Ok, so she's 10 years old and maybe arthritis is setting in. I wasn't terribly concerned.

Until I moved her neck.

She began to shiver in pain, holding her head to the right and holding her foot off the ground.

She went to the vet yesterday on an emergency visit and they drew bloods. Her kidney problems are at least stable (a month of k/d, herbal kidney support pills and lots of water). Thinking it's a pinched nerve and having limited time yesterday, we took her back today for x-rays.

There's definitely something on the films and it's with a disc in her neck. She's either got a disc that's calcifying, an infection, or, worst case, cancer.

For an additional $150, the films are being sent to a radiologist to see if s/he can further refine a diagnosis without being invasive.

She's on an anti-inflammatory - Deramax - I think it's a steroid - for 2 weeks and when the senior vet comes back from vacation, depending on the probable diagnosis, we're going to discuss accupuncture and chiropractic for her. Yup, he does those things for dogs. If it is cancer, god forbid, we're going to discuss palliative care.

The vet brought up something else as well. Maggie has had adult onset parvo, off and on kidney problems for years, and a host of other issues that generally healthy dogs don't get. She brought up the idea that maybe her immune system isn't normal. Whether it's genetic or acquired who knows, but it's an interesting thought. Not one I'm happy with, but not something to ignore, either.

If we can and do go ahead with the accupuncture and chiro for her, that means she's going to have to stay relatively calm for 6-8 weeks. Uh huh. It's roughly like telling a 3 year old they can't run and play. She may be 10 but she's got a lot of puppy in her. She's gonna need it.

Monday, February 26, 2007

Mini-Intervention

I want your honest opinions about this, both the idea of it and what I plan to say.

At some point in the next week or so, probably after the closing when there's less chance for her to fuck it up, I want to approach my SIL and essentially have a mini-intervention. It doesn't have to include Debbie. In fact, it's probably better if it doesn't. SIL is more likely to hear me if she's not also stressing with Deb. You might think they're like oil and water...they're more like kerosene and a match.

Ok, so here's what I plan to say:

B, I know you might not want to listen to me, I'm sure you don't, but I have to say something to you. Before you say anything, please hear me out. Let me say all of it before you respond.

I've been a part of this family for 18 years. I am really honored and blessed to have been accepted by your parents and you as a member of the family. I'm sure it wasn't easy.

I know you've got to be absolutely terrified right now. I can't imagine being in your shoes. The last few years and especially few months have been extremely hard on everyone and I've been worried about you for a while. I've watched you become more and more depressed, withdrawn and angry. The house was never that clean or organized, but at least it was liveable. There was always running water, heat, and looked like a house. We had no idea it had become so bad. If we did, we would have intervened/helped, something, a long time ago. You have to admit, you were living in dangerous, unhealthy, horrible conditions. I really think you need professional help. I think your depression has gotten way out of control. I really wish you would go for help. I know you don't have insurance and money is really tight, but the women's center in Danbury is a really good start. I think they can even see you for a limited time for free. At least it's a start. I'm not telling you what to do, it's your life, but I just hope you'll get the help and support you need. I don't have much family left.

Then hand her a card with the phone number.

So...what do you all think? Keep in mind she's extremely sick right now, not thinking clearly, and definitely NOT the sharpest tool in the shed.

Sunday, February 25, 2007

Reprieve

Well we have a reprieve. The closing has been pushed off to March 5th or so, not next week. Good thing since we didn't do much at all today.

Who am I kidding, we? It was myself and one woman we hired to sell stuff on eBay. Deb works every Sunday, so she can never help, and all my/our friends who have been helping are either burnt out or going on with their lives. It's our problem, not theirs, and I can't blame them for running far and fast. Hell, if I wasn't in the middle of it, I'd run too.

So today our new eBay friend filled her SUV yet again with stuff to sell and I took only a box or two home. After walking up and back down the steps twice, my legs were jello. I had nothing left. I suppose if I really pushed myself I could have done a storage run, but I would have paid for it all next week. Not worth it.

I'm not used to this taking care of myself thing. So torn between being proud of myself and feeling guilty and lazy. I'll work on that.

So we have another week and weekend of work ahead of us. I just hope we have the guys we hired working during the week. That's the ONLY way we'll have any chance of being close to done.

Friday, February 23, 2007

finally a light at the end of the tunnel

I can't believe it's been over a month since my last post. Ok, I can. It's been a fucking insane month.

We have been dealing with Hell House, House of Horrors, Nightmare Inn - take your pick - for the past 6 weeks. Five 30-yard dumpsters later, 2 storage units and two women who sell on eBay, there is FINALLY an end in sight. Even though we could easily take another 2 or 3 weeks to clean and sort shit out, the closing is next week.

This weekend is the final push to clean, pack and load the storage units. During this process, we've had some amazing friends helping us. Some have come only once, others 2 or 3 times or more, cleaning unimaginable filth, working their asses off, all simply because they're amazing people and great friends. We're going to take everyone out to dinner in the next couple of weeks, a celebration of sorts and a huge "can't thank you enough" party. Even the guys we've been paying will be a part of it. They've had to put up with so much, all saying they've never seen anything like this.

We've also been dealing with Happy Pants, Stupid, Fucking Cunt, Bitch for Brains - take your pick - Deb's sister, this entire time. She has done ZERO towards dealing with the house. The only thing she has done is take some furniture and a couple of bags and boxes of her own clothing and stuff. THAT'S IT. She hasn't even thrown out a bag of daily garbage that she created. She has come by and cursed out everyone working, instilled fear in a grown man (looking for the burning cross and sheet over her head, the fucking bigot), thrown boxes, clothing and bags around the house, broken the window because the door was jammed, and ransacked already packed boxes. Oh yeah, big help.

She won't even tell us where she's living. Everything has to go through the town social worker, another piece of work, who has vehemently defended Stupid, saying Deb's been at fault for everything and oh poor misunderstood little sister.

What. The. Fuck?!?!

Debbie has done nothing but try and help this bitch. Everything she does is with the mindset of making sure she's getting a fair deal. Maybe not the best deal, but at least fair. Debbie has lost sleep over this and is taking Xanax to deal with the nerves and stress. And this fucking bitch has the nerve to say she's at fault for Stupid's predicament? Just give me one reason...

After she broke into the house, Debbie was wild-eyed, afraid that she would come after her/us at our home. Ok, so it's the PTSD rearing it's ugly head, but the Bitch is definitely sick enough to threaten or hurt us. First foot on our property and I'm calling the cops.

Rambling more than usual tonight, but tired, stressed and so ready for this to all be over. So, if you're in the area and want to help this weekend, let me know and I'll send you directions. There's a party afterwards.

Saturday, January 13, 2007

Pathology and house cleaning

Today we started the task we've been dreading for years. We started cleaning out the house where Debbie's sister B lives, where she's always lived. The house is sold and we're trying to salvage whatever we can before it's too late. We got there around 8:15 in the morning and worked until after 4pm. We also had 3 incredible friends come by and help. They were amazing. I can't thank them enough, and they're all eager to come back and help more! Trust me, we all wore hats, dust masks and gloves and probably should have worn respirators.

The woman is 45 and has never lived away from home. Ever. She never moved out, fucked up, and moved back like many of us have. She's simply always lived there. To be fair, there is a great deal of psychiatric pathology going on. It's undiagnosed and untreated, but there's no denying it, ok, so she does, but that's part of the disease. She's always had problems, probably why her parents enabled her so much - they just tried to take care of their sick daughter. Didn't do her any favors, but I can sorta understand it. My goal for her is to have her hospitalized, diagnosed and treated, and once she has the proper diagnosis, to get her into the disability system. She may be able to function better with treatment, but I honestly think there's some major cognitive issues as well. She just doesn't process information normally. If she were in the system, she could have insurance, health care, a steady income, someone to make sure she took care of herself...etc.

Anyway, back to the house...when their parents died, Debbie and B got it. We let B live there with the understanding that she would take care of the bills and taxes. We foolishly expected that she would keep it reasonably livable. We were wrong. The house was never very clean, but at least you knew it was a house and people could live there without fear of it collapsing or otherwise killing you. If a health inspector walked in, he'd instantly condemn it and throw a lock on the door.

There is no running water. There hasn't been in over 2 years, maybe 3. She's been buying or somehow getting gallon jugs of water for herself and the dog. FYI...we rented a port-a-john for the cleaning up process.

I cleaned up/threw out a dozen bags of used cat litter, along with a full-to-the-brim litter box that was in the hallway. The cats died 2 years ago.

There was mouse and rat shit throughout the entire kitchen, on nearly every surface. There were hundreds of plastic shopping bags around the house that had been made into mouse/rat living quarters.

Every inch of the ceiling and every surface in the livingroom was obscured and covered by dust-laden cobwebs. We're talking an inch or more of dust.

There was a layer of papers, unopened mail, magazines, books and godknowswhat that was about a foot deep throughout the entire livingroom. I slipped and fell twice.

To give you a rough idea: We threw out around 50 contractor bags of garbage, and that was just for the kitchen and creating a pathway in the livingroom. We're not even 1/8 of the way done. Why not a dumpster you might ask? Because the way the parking area is set up, no, no driveway, the driver would have to maneuver around a subaru wagon that hasn't moved in 4 years. The parking area/bank that it would be on might not support it, either. It probably would, but I'm sure the company doesn't want to risk it. At least for now, a few thousand more bags should do it.

Obviously both Debbie and B are having a hard time with this. B is feeling and acting like a trapped animal, lashing out and being exceptionally nasty. She is losing the only home she's ever known, feeling like she's being evicted, and she's losing the cocoon of insanity she's lived in/created for herself. She's rightfully terrified. Debbie is finally seeing the depth of B's illness, but she's still trying to make sense out of insanity and expecting her to take part in the process. I'm just hanging in there, bringing friends to help and being as supportive as I can. It's all I can do right now.

I could go on, but words don't do it justice. I also promised Debbie I wouldn't post pictures, but if you want, and I know you, I can send them. Just ask.

Too tired to keep writing.

Saturday, January 06, 2007

Nauseating and appalling

Prepare to be nauseated, appalled and outraged. This little girl has been sexually mutilated for the sake of convenience, to make her parents' lives easier. The parents should be arrested for child abuse. The doctors who performed the surgeries should lose their licenses and the hospital should lose their JAHCO certification. If a mother had asked to have her disabled son's testicles removed in order to keep him small or because she didn't want to deal with an erection, would the doctors and hospital ethics board approve the surgery? I highly doubt it. But mutilating a girl is ok. Unbelievable.

The family's nauseating website:


A different viewpoint: