Countdown to GE Day -- 15 days

It looks as though my General Exam will be occurring on 14 January. The public presentation (my minimum 45 minute talk about why and what I'm doing) will be at 1:00 p.m. Central while the defense of my proposal will start around 2:15 or 2:30 and lasting as long as my committee wants.

Yesterday, I started putting together the presentation. I like making Powerpoints because I like to put in little pictures and slide titles that are humorous -- not to mention, the PP is easy because the hard part (writing the proposal) is pretty much over. An example -- one of my first slides discusses how environmental degradation can have obvious results such as extinction of a population. Next to the list of effects, I have a cartoon dinosaur with x's for eyes lying on his back in dirt with no vegetation.

Today, I will make more slides IF I can stay awake. So far, I keep falling asleep. Trying to work. Really! ::grin::

MERRY CHRISTMAS!!!

Just spending a quiet day at home with the folks. In a bit, I'll probably dive into my new Stephen King, but I just wanted to wish you and yours a happy holiday no matter what or how you celebrate.

A good day

Today I woke up to an email from Lupa telling me she will be editing my submission to the anthology "Engaging the Spirit World" in the next month. To quote her email: "Just from a first look, the essay overall is good stuff! I'm probably going to have you tease out some ideas in more detail, but this is a good first draft."

::happy gimp squee::

To tell the truth, I thought it was a crap first draft that would never even make it to the editing stage, and that would have been all my fault because I didn't give myself nearly enough time to do a thorough job. If she still likes it after the second read/editing stage, I will endeavor to make it the best it can be. Imagine me being published in both the science and spiritual venues. Wow.

This afternoon, I visited with my pulmonologist about my random sleeping episodes. His instinct was that I have sleep apnea which is causing me to not rest properly. He wanted to try to get me in to the sleep clinic to do an overnight sleep test, but he didn't think they could get me in before I have to go back to NO to do my General Exam. Then I brought up something my friend Lance (who also has SMA) mentioned to me a few months ago. His youngest sister (who also had SMA) died a few years back from hypercapnia-induced renal failure (at least, that was my take on what he told me). She didn't breathe deeply while asleep and didn't exhale enough carbon dioxide. The kidneys act to help "scrub" CO2 from the blood, and because it took doctors a long time to catch Lori's hypercapnia (excessive blood CO2 levels), her kidneys became too stressed and ultimately failed. I brought this up to Dr. R because I also breathe shallowly while asleep, and he said that he had been thinking about hypercapnia as well. So, we decided to skip the sleep test and go straight for a BiPAP (bilevel positive airway pressure) machine which would be recommended for correcting sleep apnea or hypercapnia, and I don't have to worry about stressing my poor stone-prone kidneys.

Afterwards, we went to Target. I got Christmas presents for Mom and my niece, and I got fun knee high socks and German Black Forest chocolates (dark chocolate squares with a hint of cherry) for myself.

Altogether, a day of accomplishments.

Non-science Writing

If you'd like to see a small bit of original fiction I wrote this evening, head over to Deliberations by Diceros to have a read.

Music Monday

I'm going to apologize right out of the gate to anyone using dial-up to read this blog, because it has as many videos as I could nab and links to others. You see, today's entry is about music and how it affects our moods, and what better way to try to experience what I'll be talking about than to hear the music? Some of these have an emotional tie that you won't be able to experience, but some of these are all about the lyrics.

Saturday night I spent some time alone with my music, really listening to it and letting myself feel the emotions it invoked rather than it just being background noise while I wrote on the prospectus or made dinner. It was a bit of an emotional roller coaster, and I wanted to share some of those feelings since I've gotten good at bottling things up until I explode. I can group the songs into three basic groups: Songs that Remind Me I'm Not As Cynical as I Wish I Were, Songs of Remembrance, and Songs of Strength and Hope.

Songs that Remind Me I'm Not As Cynical as I Wish I Were
I'm not as cynical as I used to be – and I blame it on the Depo! That darned "feel good" hormone progesterone coursing through my body is turning me into a soft girly girl who cries every time she sees the Sarah McLachlan ASPCA commercial on TV. Though I must admit that it's awfully nice to not have a heavy, soul-draining, irregularly-timed period every month-ish. Here are some tunes that played today that get me thinking about having someone special.

If I Were You, Collin Raye - This one's double listed. For the most part it belongs here because it's a love song, but it's not a cheesy, sappy love song (there's a little cynicism!). Collin Raye sings as part of a couple who's partner has just asked "Where we go from here?" He tells it straight up - he doesn't know ("Is what we have enough to last a whole life through? Who knows, baby, who knows."), but he'd like to figure it out ("I won't promise the moon, but I promise to be here."). The song is about real love, not idealized love. He doesn't know what the future holds, "But what if together it gets better every day?" Well, his answer is simple, really - "If I were you, I'd fall in love with me."


Chances Are, , Martina McBride and Bob Seger - This is a nice duet, and the singers' voices are nicely opposing. Seger's is deep and gravelly while McBride's is higher and smooth. They work well together with Seger's piano. A bit of the song play in the Sandra Bullock/Harry Connick Jr. movie "Hope Floats," and its tone fits really well with the movie in that it's about a love you weren't expecting that works its way subtly into your heart until one day you wake up and go, "Well, hell. I'm in love." It's shown in McBride's verse:

I remember clearly how you looked the night we met
I recall your laughter and your smile
I remember how you made me feel so at ease
I remember all your grace, your style
And now you're all I long to see
You've come to mean so much to me

It's a sweet song that I like to listen to over and over.


Shiver, Jamie O'Neal - This song is sexy. It's meant to elicit the physical and describe how a person can turn to goo just with a glance from her partner. A verse and the chorus:

I love the way your whisper slowly, softly lingers
in my ear
You move a little lower, the world starts spinning slower
Then it disappears
Your lips so close we kiss almost
Just barely touch, but that's enough to make me
Shiver
Tremble
I never, no I never once felt so much
It shakes me how you take me
Deeper than I've ever been it's to the core under my skin
I shiver

It's hot!





Songs of Remembrance

There You'll Be, Faith Hill - This song was very popular in the months after my sister died, but I didn't pay too much attention to it for quite some time. One night, I was relaxing before bed and just sitting still while listening to music. This song came on, and I really listened to the lyrics. I thought of how, when we were young, my sister and I had always backed each other up and been each other's best friend. "You showed me how it feels to feel the sky within my reach, and I always will remember all the strength you gave to me. Your love made me make it through, oh I owe so much to you. You were right there for me." I never truly recognized that I had learned a lot about inner strength of my little sister, but I suddenly knew while listening to this song that I hadn't learned enough. With the last lines of the chorus -- "I'll keep a part of you with me, and everywhere I am, there you'll be" -- I promised to keep my sister's strength and optimism with me, especially when it seems all in a situation is lost.




No Frontiers, The Corrs - For my brother's funeral, I made a CD of some of his favorite songs to play while folks gathered for the services. We finally figured out how to make the church's sound system work right before the services began, so the only song that got played was this one that I picked for when we all left the church for graveside services. This was one of our favorite songs when we lived together, and we often played Mary Black's version from a Celtic CD. When Paul discovered The Corrs years later ("It's a group of three hot Irish chicks and their brother" was how he described them), he often commented that he preferred their version over Black's.

In your eyes
Faint as a singing of a lark
But somehow this black night feels warmer for their spark
Warmer for the spark
To hold us ‘til the day when fear will lose its grip
And Heaven has its way
Heaven knows no frontiers
And I’ve seen Heaven in your eyes



My brother moved past any insecurities and fears he may have felt and lived a good life. Would that everyone could.


Faithfully, Journey - I went to the same Muscular Dystrophy Association summer camp from age eight until age twenty-one, and I made some of my best friends there. Every year we had a talent show, and after the show we had a concert from the Airheads, our in-house air band made up of mostly male staff members and a couple of boy campers. We all acted as if we were at a big time concert, screaming and throwing ourselves at the "band" members. It was great fun. The Airheads specialized in "covering" REO Speedwagon, Bryan Adams, and Journey, and every year they performed "Faithfully." This song always puts a smile on my face, and sometimes it makes me cry, because it reminds me of good friends.

Songs of Strength and Hope

If I Were You, Collin Raye - I know I mentioned this song already, but it has two great lines that I need to print and put up near my home and lab computers. "If I were you I'd promise to live life for all it's worth, take all that you've been given and leave your mark upon this Earth." This is what I've been trying to do all my life. I've been trying to push through the stereotypes of disability, to show people (including some in my extended family) that a person in a wheelchair can contribute more to her/his community and the world than having a nice, safe office job. Please be aware that I am not down on office jobs. That's just not what I've been called to do. I'm a scientist, and I refuse to let bad dreams of being "fired" by advisor scare me off.


I Will Be, Lila McCann – This whole song is about believing in yourself, having confidence in yourself, and reaching for as high a goal as you dare. I don't think I can say any more than that. There's no video here, but you can hear the song at least.

I will be here, I will be strong
I'll face my fears when the night is long
And still go on
I will be brave, I will be bold
Follow my faith to a higher road
And I'm not there yet
But I will be

One task down

I submitted the Ford Foundation Diversity Fellowship application at 9:13 p.m. Central, leaving me 47 minutes to spare. I'm really taking a chance with this thing because their focus is ethnic diversity and working in an ethnically diverse space. I have, and I do. Hell, our lab personnel at the moment represents five countries among eight people. I played up that plus the fact that I'm in a wheelchair and only 30% of PWDs in the US are employed and many of those near the poverty line. I also banged on about how one rarely if ever sees a PWD at a scientific conference. The last lines of my personal statement:

"Rarely are PWDs seen in the classroom or laboratory, and almost never are they seen at scientific conferences. I want to change that. I want to be a researcher who does great work that she presents at conferences. I want to be a professor who helps all her students to learn no matter what their backgrounds are. I want to be a mentor who shows by example of her life that a person can do anything s/he wants. I have worked within my own status as a minority to earn scholarships, two degrees, good employment, admission to a Ph.D. program, and a past fellowship; I want to help others have the same successes."

Hopefully they'll give me one of their 35 fellowships.

Now to finish the prospectus and the manuscript -- the latter of which I still have not gotten back from my advisor who said he'd give it to me last Monday.

Sadness and Gladness

I've spent the better part of this month working hard on my manuscript, a fellowship application, and my prospectus. Two are close to completion and the third will be in short order. I've been doing all this work wearing a blanket of depression because today is the one year anniversary of my brother's death. I have days when I'm OK, other days not so much.

For the sake of brevity (because I keep falling asleep due of bad sleep last night and because I need to work on the fellowship that's due Friday), I will say only this for the time being:

To all the readers of Beth's blog who came over here to offer sympathy, empathy, and support -- I can not say thank you enough, and I am humbled by your kindness.

To the Three Musketeers (my new nickname for certain Canadians and their very own park ranger) -- I received your package yesterday, and I cried at all the love sealed up in that box. I never could have thought it would hold so much. You're all going through so much right now that I'm amazed you can find the time/energy to put together such a sweet and loving surprise to help alleviate part of my grief. Thank you.

Attention Downing Street!!!

Thanks to Mark at The 19th Floor for the head's up, er . . . for pointing out, um . . . for mentioning this technique for ratifying the UN's Convention on the Rights of Persons with Disabilities.

Birthday Buddies

Happy birthday to my most wonderful mom who is 55 today. I called her at a little after 0700 this morning to sing "Happy Birthday" in my I-just-woke-up-two-minutes-ago voice. Yeah, it was a Grammy winner.

Welcome to the world, Gabriel Alexander! Jonikka left a message on my voicemail about half an hour ago to tell me her and Erik's son had been born at 1:11 p.m. on 11-11. I can't wait to see that natal chart! ::grin:: You're coming into the world at a very interesting time, little one. I can't wait to meet you in person.

Two days of Halloween

Aaarrrrrr! These are from the 30th. Costume put together with stuff I already had.

Front:




Side, to show off my piratey hair tie:






Look! It's a Hummer! It's a tank! It's Supergimp! From the 31st. Thanks to Sarah for making the shirt and to Kim for loaning me my curtain-cape.

Check it out

You have to have to HAVE TO see this photo.

MEH

And that's all I have to say.

At least folks have to wait for a request

From Kay at The Gimp Parade, this funny vandalized sign.

Now I have images of drooling, hungrily grinning ABs with cutlery stalking PWDs dancing in my head.

Not disability related, but folks have asked/wondered

In response to questions and comments on Beth's safari post, I offer you

RHINOCEROS PORN!!!


Diceros bicornis, black -- Please note the pointed upperlip.





Ceratotherium simum or Rhinoceros ceratotherium, white -- Please note the square upperlip. The lips are the easiest way to tell them apart other than size.





Rhinoceros unicornis, Indian or greater one-horned





Dicerorhinus sumatrensis, Sumatran or hairy





Rhinoceros sondaicus, Javan



Lots of good, concise info here.

Remembered in Bronze

Here's a case in which I doubt my friend/sister Beth would say, "Screw Bronze!"

Professor Stephen Hawking will have a bronze statue cast in his honor and placed near his office in the Cambridge University Centre for Theoretical Cosmology. The artist has not given a date for when the ten foot statue will be finished and set.

I don't understand how there are people who don't know what strides this man has made in science. Did you read the comments section of the article? I present for your shock the first commenter, Mr. Keith Sloan -- "I wish I had a better understanding of what Stephen Hawking's has actually achieved. Okay there is theory of Hawking Radiation with Black holes, but I thought it was unproven and some experts completely be-little his maths/calculations. Stephen seems totally over rated when compared to say Newton."

A) I'll be nice and ignore your grammar (e.g., the possessive in the first sentence).

B) Not all scientists agree with each other, Mr. Sloan. In fact, your precious Isaac Newton had his deterrents (e.g., Robert Hooke, the father of microscopy and the man who coined the term "cell"). Half the fun of science is coming up with new, radical ideas, and just because Dr. Hawking's hypothesis is still being discussed does not mean he's overrated. I figure if you're going to put yourself on a first-name basis with one of the greatest minds of our time, the least you could do is be a bit more polite.

Or how about Mr. Ben Cossey who cuts to the chase: " . . . he's done nothing note-worthy and i find it a little insulting he gets a statue."

A) "I" is capitalized.

B) If he's done nothing noteworthy, why is he paid to travel the world to speak? Why did the Cambridge students set all this in motion? Speaking as a former university instructor and future university professor, there is no greater honor than to be told by a student that you are an effective educator. And I promise you, if you say he's getting special attention because of his disability, my 300+ pound wheelchair with my 130ish pound fat ass in it may just show your feet or knees some special attention.

Congratulations, Dr. Hawking. Thank you Cambridge students and Ms. Shepherd.

It's been a while

Well, life goes on -- even when you lose the majority of your baby fish to a power outage brought on by a hurricane. You get frustrated, you get mildly (or not so mildly) depressed, but you just keep plugging because the alternative -- the big "Q" -- makes you feel like you're going to throw up.

So what have I been up to? I've been analyzing hatching data collected by my assistants which is at times a bit confusing to figure out. I've been working on an essay about how scientists can actually in fact be spiritual that I will submit for consideration by an author who is putting together an anthology on totemism and animism. I need to be working harder on it as it's due on November 1st. I also need to be working harder on my prospectus, the presentation for my General Exam, a fellowship application (since I probably won't be finished by next summer with this latest setback), and a poster abstract for a conference in the spring. The fellowship application and the poster abstract are due by the end of November.

I do my best work under stress.

The Lucky Mutant

Check out this video posted by Mark Siegel at The 19th Floor about a guy with spinal muscular atrophy.

Certain little things about this guy reminded me of my brother. I almost started to cry.

EXCELLENT!!!

Congress passed the ADA Amendments Act! I hadn't been watching this lately because of all the stuff going on in my mundane life, but thanks to The 19th Floor's link to Cristobal Joshua Alex's blog, I am a bit more up to date. Thanks, guys!

Wow! Really?

According to The Telegraph, Stephen Hawking is considering leaving Cambridge for Ontario. It's merely a consideration, but maybe it will reopen the eyes of British funding agencies if they might lose one of their most amazing scientific resources.

I for one hope he does it. It would make it easier for me to hero-stalk him if he's on THIS side of the pond.


Reading another article from last year about Dr. Hawking's 65th birthday, and a photo caption reads, "He was struck down by motor neurone disease when he was 21 and given a year or two to live." He was not struck down. He brought physics to the non-physicist. He won a Putlitzer Prize. He's taught people with severe disabilities a thing or two about keepin' on. He was not struck down.

ADAPT Blogswarm, Day 4 -- Press Release

For Immediate Release
September 17, 2008
For information Contact:
Randy Alexander (901) 359-4982
Marsha Katz (406) 544-9504
www.adapt.org
www.duhcity.org


50 Arrested as ADAPT Takes Affordable, Accessible Housing Crisis to Congress

Washington, D.C.---From their base at "DUH City", groups of ADAPT activists fanned out on the Hill to hit congressional leaders who have responsibility to help solve the housing crisis for low income people with disabilities. Visits to the offices of Rep. Barney Frank (D, MA), a longtime leader on housing issues, and Senators Chris Dodd (D, CT) and Richard Shelby (R, AL), the Chair and ranking Member of the Senate Committee on Banking, Housing and Urban Affairs resulted in a total of 50 arrests.

"Our first stop was to see Rep. Barney Frank," said Diane Coleman of ADAPT in Rochester, New York. "ADAPT has been in talks with him over the past year, and early on he told us in no uncertain terms that he could get 500 housing vouchers from HUD that would be targeted to free people with disabilities who live in nursing homes and other institutions. He repeated that promise for months, and we kept trusting his word, and then one day he suddenly says he can't help us. We were also working with him to get funding that pays for segregated housing redirected to support integrated housing and more vouchers. Sen. Frank arranged a hearing on this funding, and not only did he not invite any people with disabilities to testify, he didn't even notify us about the hearing. So, today, we decided to confront him on his broken promises and bad faith."

Shortly after 13 ADAPT members entered Franks' office, he ordered staff to have them arrested, refusing to even discuss the ADAPT concerns, or strategies to address the housing crisis for low income people with disabilities trapped in institutions for lack of affordable, accessible, integrated housing.

ADAPT went to the offices of Dodd and Shelby because HUD and housing fall under the purview of their committee. Sen. Shelby declined to work with ADAPT saying, "I don't help people who can't help themselves." There were 19 arrests made in Shelby's office. An aide to Sen. Dodd spoke with ADAPT, but declined to put her remarks on paper after indicating she might be willing to do so. ADAPT conti
nued to wait for the written statement, and eventually nearly 25 people were arrested.

"The TV is full of news about the bank crisis, and the mortgage crisis, and the need for candidates to appeal to middle income people," said Cassie James, Philadelphia ADAPT organizer. "Meanwhile, people who live on disability benefits, and people who are trapped in nursing homes because of no housing are being held hostage while the government bails everyone else out. Rent has gone up so much, it's higher than many monthly disability benefits. Not only do us younger people with disabilities need affordable, accessible housing, older people need it, too. This is a crisis, and we need help to solve it."

ADAPT has been in D.C. since September 13, erecting DUH City, a tent city, on the plaza outside HUD headquarters to bring attention to the situation of the people who have been ignored in this election year- low income people with disabilities. The crises with the economy and housing extend well beyond the middle class, but the Presidential candidates and their parties have seemingly forgotten that fact. Not so, ADAPT.

ADAPT Blogswarm, Day 3 -- Press Release, DUH City Times Issue 2, and News Video from Virginia

For Immediate Release
September 16, 2008

For information Contact:
Randy Alexander (901) 359-4982
Marsha Katz (406) 544-9504
www.adapt.org
www.duhcity.org

ADAPT Challenges HUD, Dems, McCain on Disability/Housing Economic Crisis

Washington, D.C.---ADAPT wasted no time challenging multiple policymakers on the housing crisis for persons with disabilities who have low and extremely low incomes. After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing.

"The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octonagerian Barb Toomer, ADAPT organizer from Utah."The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee."

ADAPT's housing platform points to America's20longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment.

"The federal government is sending stimulus payments to middle class workers, and is providing economic relief for the mortgage crisis, and maybe even the bank crisis," said Dawn Russell, Denver ADAPT. "What about all of us who live on fixed incomes? If we can't afford the cost of housing, we'll end up on the street or being forced into nursing homes and institutions. What are the federal government, Congress, and the presidential candidates going to do to help us with our housing crisis?"

In its platform, ADAPT is asking for:
-- 5000 new housing vouchers per year for 10 years, targeted to people transitioning out of nursing homes and other institutions
-- Twice as much funding for the construction of new housing stock that is affordable, accessible and integrated
-- Policies and procedures to track the new vouchers to assure they remain targeted to people with disabilities when the original user becomes ineligible or no longer needs the voucher
-- People with disabilities who reside in institutional settings to be recognized as "homeless."

ADAPT's DUH City will remain in operation twenty four hours a day until Thursday, September 18. The DUH City Times will be delivered daily to every member of Congress, and there will be daily DUH TV coverage on You Tube. Background information, real stories of real people and photos can all be accessed at www.duhcity.org.




DUH City Times -- Second Edition -- September 16, 2008

On site at DUH City - A Monday Night Recap

Three AM

Last night at the big meeting, ADAPTers were shocked to find out
that they had to be in line at FOUR AM today ! We buckled down however, knowing that there had to be a pretty damn good reason for getting up that early. So we finished our day’s business, went to bed, and started getting up as early as one and two am…

My roommate tapped me awake at 3 am and we leaped to action. I took a peek outside and ADAPTers were already swarming the patio below. We were downstairs by 3:45 am, and as usual with ADAPT, it was “hurry up and wait” as the line formed up. Finally, around 4:30 or so, we began silently heading out.

Luckily, our target destination was only two blocks away! That’s right, HUD. As folks streamed in to ring the plaza and our logistics team swarmed in with vans and equipment, Operation DUH took effect. We have set up several dome tents to house our equipment and teams such as media and food. We are calling this all DUH City and we even have a website - www.duhcity.org!

It took us maybe 20 minutes to get our basic stuff set up and we were complete within an hour. We have five big blue dome tents set up, which is amazing. Folks chanted their guts out till 5:30 am, when we had a roster of speakers discuss why affordable, accessible, integrated housing is important. Mike Oxford said, “If Congress set up housing as fast as ADAPT, our problem would be solved!” We heard from many who have been forced into nursing homes or being homeless because of the lack of affordable, accessible, integrated housing. Our goal in being at HUD is to get politicians and federal agencies to support our housing platform. The police said they wouldn’t arrest anyone if we let visitors and employees have free access. Sometimes we are accommodating and we immediately drew a sidewalk onto our tent city—hence no arrests at Duh City.

10:30 AM

We just finished a big rally where folks talked once again about how important housing is. We also passed out the first copy of this newspaper and a team of folks are now in the process of delivering copies to every office on the Hill. Bloggers are now actively following our news and Twitter is alive with text alerts about the action. Three color groups have departed for missions unknown. The other color groups are holding down the fort at DUH City. Some are taking brief naps. The atmosphere is very relaxed as we save our energy for whatever we have to do next.

2:30 PM

The green color group came back and reported that, under heavy police watch, they visited the Democratic National Committee headquarters. They spoke with staff and a representative of Obama’s campaign, who accepted copies of the platform and promised to pass them along.
They also said they supported the concept of affordable, accessible and integrated housing and would try to drop by to visit DUH City.

It also turned out that the red and yellow color groups went to McCain’s headquarters in Crystal City, Virginia. At the time of this writing, it is reported that several ADAPTers are inside, and a few folks have been sending cell phone pictures of conflict inside the volunteer area.

Meanwhile, back at DUH, the atmosphere picked up once we heard the exciting stories brought back by the action teams. Johnny Crescendo has entertained the crowd a few times, we have done some street theater and we have done many, many rounds of chanting. We expect to be here for quite a while longer and are excited to hear back from our red and yellow McCain teams!

3:20 PM

We hear from our people that ADAPTers are now being arrested at McCain’s office and that the police are being really, really rough. We know our people are strong and we await word of the final arrest count. It is a crying shame that a presidential candidate’s campaign would rather arrest poor people than work to find solutions to the lack of affordable, accessible, integrated housing.


Stay in Touch by Amber Smock

This week, ADAPT is getting the word out about housing in several new ways. In addition to our press releases and contacts, we are keeping up withpeople via the digital world. We have a website devoted to this action at www.duhcity.org, and no less than 37 bloggers at press time are involved with the National ADAPT blogswarm. Folks who love text messages can stay abreast of our doings via NationalADAPT on Twitter, a service that allows users to send brief messages and pictures to one another in real time. A posse of ADAPTers are also delivering the DUH City Times to every Congressional office on each of our action days. That’s right, we are dropping off the news at all 535 politicians’ offices on the Hill! We’re all fired up to bring you the news so we can work together to FREE OUR PEOPLE!

Moreover in putting our money where our mouth is about accessibility we also have large print and audio versions of the newspaper. Call us at (801) 347-0370 or email us at jcostley@sprynet.com to request one of these alternative versions. In addition, keep an eye on www.duhcity.org for postings of DUHtv, which will have frontline reporting from real live ADAPTers and will also be captioned.

Finally, we have Spanish language outreach efforts, because el pueblo unido nunca sera vencido! For more information, check out www.duhcity.org


Three Strikes: No Housing for You By: Amber Smock with Lopeti Penima’ani

“Without affordable, accessible, integrated housing, I would be homeless,” said Lopeti Penima’ani of Salt Lake City ADAPT. “I actually was homeless until I could find an affordable place.” “In Utah, to get an apartment we have to have first and last month’s rent, plus a credit check. I didn’t have the first and last month’s rent, and my credit was all over the place. With all three strikes, what choice do you have?”

Affordable housing can be a life or death decision for too many of our people with disabilities. Having to face this decision is a violation of our human rights. We need significant action by lawmakers and HUD to make affordable housing for all a reality, but this change needs to happen in partnership with groups like ADAPT. Lopeti also pointed out that the work of disability rights activists has paved the way for real change. “Because of the Disabled Rights Action Committee (DRAC), about seven years ago an apartment complex became accessible. With subsidies it also became affordable and now more people with disabilities live there.”


Housing for All: An Advocate’s Vision By Amber Smock with Beto Barrera

Beto Barrera, a Chicago ADAPTer and the Housing Team Leader for Access Living, has been at the forefront of the housing struggle for people with disabilities for many years. He and his team work for housing policy change at the local, state, and national levels. He is committed to the vision of affordable, accessible, integrated housing. We sat down for a brief talk about the separate parts of that vision.

Affordability

It’s no secret that our people, for the most part, are broke. “Seventy percent of our people are unemployed,” said Beto. “That’s why HUD and the Centers for Medicaid Services (CMS) need to work together to create availability of affordable housing. The cheapest studio is $500 a month.” In addition, the amount of rent you pay per month does not reflect the real cost of what it takes to live in your own place.

When you move into a new place, you have to have a security deposit, plus buy any furniture or equipment for your new home.

Accessibility

The lack of accessible housing is rooted in historic cultural attitudes towards peoples’ place in the world. “Housing designed with steps is based on a European and Middle Eastern cultural heritage,” notes Beto. There is a classist element to a world built on stairs. “Poor people used to live in shacks, so rich people wanted to be on stairs to raise themselves above the poor people.” These days, architects and builders justify the use of stairs by citing the possibility of floods. However, as we saw with Hurricane Katrina, floods hit all homes, stairs or no stairs. The problem is compounded by architects being afraid to offer accessible building designs to developers, because developers are reluctant to accept designs they think will not sell. “It’s very hard for them to get out of the box,” said Beto. “It’s a matter of changing attitudes.”

The progressive architects and developers are able to use the disability community as a marketing tool. They realize that a lot of people with disabilities havemoney to spend and design for our market. However, access can still be thwarted by the actions of landlords. Beto cited the example of a Chicagoan with a physical disability who uses a manual wheelchair. This man visited an apartment building with about 30 to 40 units, but was told by the landlord that there were no units he could rent but that he could refer him to accessible housing. He wrote out the name and contact info, and it turned out to be a group home. The Chicagoan filed a complaint and, working with advocates, eventually won a $15,000 settlement against the landlord.

Integration

Why is it so hard to create real communities where all kinds of people live together without segregation? “People see people with disabilities as a commodity, a money maker,” said Beto.

Beto made an excellent point when he said, “People with disabilities don’t live in housing, they live in programs. Why? Because it’s profitable. We are living in government sponsored segregation because it’s profitable.” Clearly, the government and our people need to work together to create a change in perception. There are serious problems, however, because our government does not protect the interests of all people. “Our government works for rich people,” said Beto. “This is why we have segregated housing. We know that it’s cheaper for a person with a disability to live in the community.” Instead, the rich get richer off institutions and nursing homes. “Rich people want to continue making money, so our government is protecting those people,” he said. In a true democracy, the voice of each person would matter, but what we are dealing with is a system where a few make choices for the many, where the rich collect money and the poor get poorer. This is why ADAPT is using our people power this week to get the message to lawmakers that we must work TOGETHER to achieve afford-able, accessible, integrated housing.


A BAD MYSTERY BY: JERRY COSTLEY

Everybody loves a mystery, right? Not necessarily, not when it involves flouting congress’ intent and leaving more persons with a disability needlessly without housing. This particular mystery began when Public Housing Authorities (PHAs) and HUD assisted housing providers began implementing “elderly only” restrictions that eliminated housing options for many individuals with disabilities—in fact, HUD’s own records indicate that over 500,000 living units have these restrictions and more are being added every day. Concerned about this tremendous loss of housing, Congress created 50,000 “disability only” vouchers from 1997-2000. This was a tremendous relief to our housing shortage. However, the relief was short lived. Every time an individual with a disability would move out of their newly acquired housing, the PHA would “roll over” the voucher to someone without a disability and our community would suffer a further erosion of our housing.

Again, Congress intervened, and from 2001-2004, Congress directed HUD to in-sure these housing vouchers remained with persons with disabilities when they rolled over. Instead, HUD’s instructions to the PHA’s are that these vouchers are to go to whoever is next on their waiting list.

In 2006 ADAPT began a series of protests against HUD that resulted in then Secretary Alfonso Jackson researching to find out how many of our vouchers had been lost to their flouting of Congressional intent and our critical needs. Secretary Jackson also agreed to finally issue the long sought letter to the PHAs instructing them to cease giving away our vouchers. After much pressure, we got the letter. Unfortunately, Secretary Jackson was not prompt at keeping his word and was sacked before we could hold him to locating and restoring our lost vouchers.

How many vouchers have been lost? No one knows. Can they be reclaimed? No one seems to know. How could HUD flout Congressional intent for so many years? Therein lies the mystery. Certainly Congress is not going to replace them any time soon with no guarantee that they will remain in circulation for people with disabilities.

Part of ADAPT’s demand in our housing platform is that HUD make good on its promises to locate and restore these lost vouchers. Part of our housing crisis is the result of economics. Part is inherent with the difficulty of finding accessible housing. We simply don’t need to add an additional part that is the result of HUD’s willful disregard of Congress’ intent and of our critical needs.

Please join with us in putting whatever pressure you can on HUD to make good on their obligations to people with disabilities!




http://www.wusa9.com/news/local/story.aspx?storyid=76105&catid=158

ARLINGTON, Va. (WUSA) - It's an issue millions of American families struggle with: Can you afford to take care of an aged or disabled loved one in their own home? Or do you have to put them in a nursing home to qualify for government help? It may be the next big battle on the Presidential campaign trail.Both the Obama and McCain Campaigns support the right of the disabled to choose whether to live at home or in a nursing home. But Sen. McCain opposes a Senate bill designed to change a system that disabled advocates say pushes them to spend the rest of their lives in an institution.

Arlington Police did their best to protect Senator McCain's national headquarters. Dozens of disabled advocates from across the country rushed the building in Crystal City -- and police ended up arresting nearly a dozen for trespassing.

"We don't want no houses like he has. Seven houses. We don't need anything fancy. We're asking for an apartment," said protestor Cassie James.

The activists say Medicaid WILL pay for their care in a nursing home. But WON'T pay for them to have a health aide at home. "All we want to do is level the playing field so people will have a choice," said activist Rick Knight.
Sen. McCain says government living assistance for the disabled should NOT mean "perpetual confinement to an institution." But he also says the bill supported by the activists is too expensive. "The Community Choice Act is not a piece of legislation that I support," Sen. McCain told a Denver forum.

Bobby Coward says that's not good enough. He's a Persian Gulf war vet left a quadriplegic by a car accident. "If I don't get an attendant, I can't get out of the house, so I'm laying in bed."
He could check himself into a nursing home, and the government would pay for it. But he says that's the last thing he wants.

"Is it going to cost the government more to keep you in your own home?" I asked him. "No! No, matter of fact, it's cheaper.' A study this year from Prudential Financial says a home health aide in DC runs an average of $19 an hour. The cost of a private room in a nursing home: about $232 a day.

ADAPT Blogswarm, Day 2 -- Updates From the Action 2

Sent to me via email from an ADAPTer:

At approximately 4:30 AM on Monday, September 15th, hundreds of disability rights activists from across the country took over the plaza in front of the US Department of Housing and Urban Development (HUD). The activists, from a grassroots organization called ADAPT, are targeting HUD with this 'tent city', http://www.duhcity.org , action because people with disabilities are in a housing crisis. There simply is not enough housing that is accessible, affordable, and integrated for people with disabilities.

ADAPT activists have taken this message to the Democrats and Republicans. Eleven ADAPTers were arrested Monday afternoon at the National campaign headquarters of Senator John McCain.

To support these activists and to make this action work, ADAPT needs your help! We need the candidates for President and those for Congress to here (sic) from YOU - the VOTERS of this NATION!


Use this LINK to send a letter to the Candidates for President and the Candidates for Congress in your district! Then send this action alert link to EVERYONE you know!


http://capwiz.com/rochestercdr/issues/alert/?alertid=11928371&type=ML&show_alert=1

ADAPT Blogswarm, Day 2 -- Updates From the Action

Word keeps coming in on the ADAPTers' work so far. Groups have gone to the Democratic National Convention office and to Senator McCain's headquarters in Virginia. ADAPTers at the DNC were escorted by police officers, presented their case for the Community Choice Act, and invited staffers to DUH City. So far, eight people have been arrested at Senator McCain's office, and the group has not been granted an audience to present their case. The following call has gone out:

Please call the office listed below and tell McCain's staff to get ADAPT a meeting with John McCain!!
Disseminate!

Mid-Atlantic Regional Headquarters and Virginia State Office
1235 S. Clark Street, 1st Floor
Arlington, VA 22202
Office number is 703-297-8900
Office fax is 703-414-0051
Email Virginia staff at virginia@johnmccain.com

ADAPT Blogswarm, Day 2 -- Press Release and DUH City Times Issue 1

Media Advisory:
Monday, September 15, 2008

For Information Contact:
Randy Alexander (901) 359-4982
Marsha Katz (406) 544-9504
www.adapt.org

ADAPT Fights Back re: Nation's Low Income People with Disabilities Left Behind in Election Year Agendas

Who: ADAPT Community (500 disability rights activists from all over the country.) ADAPT is the nation's largest cross-disability grassroots disability rights organization.

What: News conference to announce opening of DUH City.

When: 10 a.m. on Monday, September 15, 2008

Where: The plaza outside the U.S. Department of Housing and Urban Development, 451 7th Street S.W., Washington, DC 20410

Why: The 2008 election campaigns have included rhetoric about tax breaks for middle income families, and media coverage has included stories about families who have children with disabilities.

Left out of all the election rhetoric are the candidates' positions on and commitments to those babies with disabilities who grow into adults with disabilities who all-too-often survive on extremely low incomes (less than 30% of the median income). These extremely low incomes are often the fixed benefit amounts of SSI and Social Security.

In 2006, according to Priced Out in 2006, the federal SSI benefit was $603/month and the average cost nationally of renting a studio/efficiency apartment was $633/month.

There are not enough AFFORDABLE, ACCESSIBLE, INTEGRATED housing units to handle the current demand in communities across America. When the Community Choice Act (S 799, H.R. 1621) passes, and older and disabled people can choose to live in their own homes instead of being forced into nursing homes and other institutions, the need for affordable, accessible housing will increase. And as the baby-boomers continue to age, the demand will grow exponentially.

HUD, Congress and the Administration have broken promises, cut funding for housing stock and housing subsidies and enforcement of anti-discrimination housing laws, and simply ignored the nation's low-income people with disabilities altogether.

ADAPT has established "DUH City" (reverse of HUD) to bring attention to and document the struggle of low income people with disabilities. When the average rent for even an efficiency apartment is more than your monthly income……where do you wind up? All too often you're forced out on the street or into a nursing home or other institution. DUH!

ADAPT's tent city will be typical community complete with its own newspaper, TV coverage, and other services.




Duh City Times - First Edition - September 15, 2008

Announcing the founding of duh city By: Jerry Costley

Solidarity! The Oxford Dictionary defines this oft used term as " noun: Unity resulting from common interests, feelings, or sympathies."

How do we gain those feelings or sympathies for others? One way is to experience or participate in the privations or hardships experienced by others.

Solidarity in Unions is gained by joining the picket lines, some snow, wind, rain or blazing heat. Want solidarity with the starving millions of the world? Try skipping a few meals and donating the savings.

ADAPT (American Disabled for Attendant Programs Today) in solidarity with our brothers and sisters who are languishing in nursing homes and whom are in fact homeless have decided to likewise render ourselves homeless through the creation of DUH city—a homeless tent city. Established in the shadows of the Housing and Urban Development Offices and built on a foundation of HUDs broken promised (see the following articles), we expect that DUH city will highlight the plight of nursing home inmates—why we consider those in nursing-so-called homes homeless, what HUD has failed to do about this and what they can do about it.

Along with the founding of DUH city we are proud to announce the establishment of the DUH City times. Published daily throughout our protest we will provide background information on the incarceration of thousands of our brothers and sisters in nursing homes for the crime of having a disability. We will also provide updates on our daily protests. We hope this newspaper will go beyond enlightening and will serve as a call to action to Congress and all who care about individual freedom and dignity.


Define People in Nursing Homes as Homeless By: Darrell Price

We recognize that institutions such as nursing homes are not "homes" at all; no more than any non-disabled person would consider a homeless shelter or a hospital bed a home.

Just as homeless shelters and "double up" housing are not real housing options for people who do not have their own residence, nursing homes and institutions are not real housing options for people with disabilities. Just like people in shelters, people in nursing homes do not have control over their own lives. Staff in institutions dictate every aspect of the lives of people with disabilities who are trapped in institutions. They dictate when people wake up, when and what they eat, and where they must spend their time during the day. Like people in homeless shelters, people in institutions have little or no privacy. Just like people in shelters experience abuse and neglect, people with disabilities experience abuse and neglect by the same staff that is supposed to "care" for them. People who are homeless and people in nursing homes are kept in the same basic struggle because of all these conditions. Due to lack of support and control over their own lives, these situations continue to perpetuate social and economic injustice.

The basic solution for all these groups is similar; a permanent, affordable residence that is fully integrated into the community. The current service system must be reformed to provide people with disabilities affordable, accessible integrated housing with services that are controlled by the people who use them and follow them to the setting of their choice.

Defining people in institutions as homeless is a critical part in making this goal a reality on the local, state, and national level. It will help insure that government agencies and other service providers for people with disabilities meet their moral and legal obligation to provide community base housing and support services. For example since 1998, the U.S. Department of Housing and Urban Development (HUD) has issued regulations and guidance which states that "the housing needs of people with disabilities are not met by beds in nursing homes and other service center facilities, but this is not enforced. Contrary HUD regulations housing needs assessments often fail to include people in institutions, so this need is rarely planned for or met in most communities across the country.
By keeping us in nursing homes and other segregated institutions you are destroying the lives of thousands of people with disabilities for the financial benefit of a few.


Daniel's Story By: Mike McCracken

Daniel P considers himself a homeless man living in a nursing home. He shares the room with 3 other interchangeable men, interchangeable because occasionally one roommate will pass away. The emotional toll of having a roommate die makes developing deep friendships almost impossible.

Daniel is 54 years old, and has been in this facility for over 2 years. He came due to a bout of liver failure and has been kept there due to family pressure and a severe lack of affordable housing. His family fears he cannot take care of himself in the community, and housing—well he is on housing lists.

Whenever anyone asks him he tells them he feels imprisoned. The occasional trip to a store with his sister or an outing with other facility inhabitants only increases his desire to be back in the community. A shopping trip to Wal-Mart or a visit to a doctor is exciting. Everything is exciting when you are usually confined to a nursing home.

Like most, Daniel has made mistakes in his life, but not large ones. He has never hurt anyone and is among the first volunteer to help whenever asked. Certainly, he has never done anything worthy of an indeterminate nursing home incarceration. He has done everything his family and doctor has asked in order to get out. Grudgingly, with some advocacy from a local Nursing Home Transition coordinator, the family and doctor are willing to "let him" go back into the community.

But there is no available housing which is affordable and accessible. Daniel cannot climb more than a few stairs and has trouble with stamina. His only income is from SSDI and, although substantially more than SSI, it is still not enough to rent a reasonable apartment.

Daniel has applied at the local housing authority and several local Section 8 apartment complexes. He cannot apply for a Section 8 voucher as that list is closed right now and even if he could the waiting list is many years long.
Daniel watches TV waiting for that letter which will give him back his freedom. A simple letter saying he is being offered an apartment, a home- his home and his life. A letter that never comes.


ADAPTers Speak Out on Housing By: Amber Smock

Affordable, accessible, integrated housing is a critical concern to ADAPTers and all people with disabilities across the nation. Many of us have fought for basic access for decades, and we're still being hamstrung by the terrible lack of housing for our people.

Dale Reid, Denver ADAPTer and administrator for the Home Health Agency at the Atlantis Community, said that the lack of housing is basically keeping people jailed in nursing homes in Colorado. Dale said, "In Colorado, 3,800 people who live in nursing homes and institutions have testified that they want to get out. But at Atlantis, we are only able to free one or two people per month. We could be doing a lot more, but we can't because we don't have affordable, accessible, integrated housing."

Lack of housing for people with disabilities also prevents us from building real communities. Tamara Wulle of Salt Lake City ADAPT said, "I think accessible housing should be important to a lot of people. I want to be able to have my friends come visit me and my mother has a disability. It's important to be in an accessible home. also, most of my friends have babies and children so visitable and accessible housing helps everybody."

Folks with disabilities are also familiar with business owners who don't make their businesses accessible because they say, "We never have disabled people in here." Doris J. King of Salt Lake City ADAPT notes that affordable, accessible, integrated housing allows people with disabilities to get around, go into stores and spend money. She said, "If people were living in the community, they could get to stores and store owners would HAVE to make things accessible."

Doris also made a great point about community when she talked about access to her neighbors' homes. "I've lived in my house for seven years," she said. "I don't know my neighbors because they have one step up at the front and I can't get up to their door."

Toby Tyler of Wisconsin ADAPT pointed out that in our struggle for housing, there is a big problem with nursing home lobbyists giving big contributions to political campaigns. He said, "Politicians need to stop taking contributions from the nursing home lobbyists. Living in an apartment or house is 100% better than living in a nursing home, because nobody wants to live in a nursing home. These lobbyists don't care about people."

Toby also said that we need to see all politicians talking about disability rights issues in their campaigns across America.

The fight for affordable, accessible, integrated housing is everywhere, from small towns to the legislative offices of our nation's capital. It's not some problem "other people" have. It's a real problem that affects real people, like YOU.

Doing the Math…
Why We Need Affordable, Accessible, Integrated Housing
By Marsha Katz

There are more than 4 million adults with disabilities under age 65 who live below the poverty line. This represents over 28% of adults with disabilities under age 65.

The 2006 poverty rate for adults with disabilities is nearly three times greater than the poverty rate for adults without disabilities (25.3% vs. 9.2%).

In 2006, the $633 national average rent for studio/efficiency apartments was more than the entire $603 monthly SSI check received by low income persons with disabilities and intended to cover all their living expenses.
In 1998 SSI payments represented about 24.4% of the national median income. By 2006 the value of an SSI check dropped to only 18.2% of the national median income, and 25% below the federal poverty level.

Adults with disabilities comprise well over half of the people with low incomes (under 200% of the poverty level) who reported significant hardships (couldn't pay rent/mortgage, food insecurity and hunger, didn't get needed medical/dental care) in 1998.


The ADAPT Community By: Tim Wheat

ADAPT is a national grass-roots disability rights group.

We work for equality and positive change in policy and programs to include people with disabilities in American society.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Do you want to live in a nursing home?

Blog Swarm -- Keep/Set Our People Free!!!

This week, I will be sharing with you press releases of ADAPT's current action in Washington DC to ensure PWDs and older people have the right and means to live independently rather than in a nursing home or hospital. There are a couple of pictures of today's organizational meeting over at Twitter. Check back every day to see how things are progressing, and if you are so inclined, please write or call your Congress-people to ask them to pass the Community Choice Act (S. 799, H.R. 1621).



ADAPT Promises Pre-Election Surprises in D.C. to Get Community Choice Act Passed

For information contact;
Randy Alexander (901) 359-4982
Chris Hilderbrant (585) 267-0343

Washington, D.C.---Over 500 ADAPT disability rights activists committed to getting the Community Choice Act passed during this Congress are coming to town September 13-18 to exert some pre-election pressure on policymakers. The Community Choice Act (S. 799, H.R. 1621) would allow people with disabilities and older Americans to choose to live in their own homes and communities instead of being forced into nursing homes and other institutions by the current institutional bias in the nation's Medicaid program.

"We are coming up on an election," said Chris Hilderbrant, ADAPT organizer from Rochester, New York, "and one of the two candidates for president, Sen. John McCain, has blatantly refused to endorse the Community Choice Act even though he says he supports community services. On the other hand, Sen. Obama and his running mate Sen. Biden have both signed on to this legislation. Maybe Sen. McCain needs some more convincing."

ADAPT will be in D.C. to confront a variety of policymakers and systems that continue to put up barriers to community living for disabled and older Americans. Home and community-based services, housing, transportation, hospital discharge planning, and managed care of long-term supports and services are all on ADAPT's list of possible targets.

ADAPT celebrated 25 years of activism in Washington, D.C. in April of this year, closing down both the Republican National Committee offices and Sen. McCain's office in the Russell Senate Building demanding that Sen. McCain, himself a person with a disability, sign on to the Community Choice Act.

"Not only does Sen. McCain have a disability himself, but he has an aging mother," said Randy Alexander, ADAPT organizer from Memphis, Tennessee. "You'd think he'd understand our issues, but maybe having all that money and all those homes puts him totally out of touch with the reality that older Americans and Americans with disabilities live everyday. Being able to live free in the community shouldn't only be available to the ultra-rich. Civil rights are not based on income!"

Since its inception in 1983, ADAPT has fought for the right of people with disabilities, old and young, to live in their own homes and communities. ADAPT efforts have resulted=2 0in a significant shift toward community of the Medicaid dollars formerly directed overwhelmingly to institutions. ADAPT has also been credited by former federal Medicaid officials with creation of the Money Follows the Person portion of the 2006 federal Deficit Reduction Act of 2005. ADAPT is the nation's largest cross-disability grassroots disability rights organization.

During the week of September 15, 2008, ADAPT will debut internet tools that will help the disability community across the country stay closely in touch with ADAPT action activities as they happen. ADAPT will widely publicize these tools as soon as they are available to the public.

I'm paying HOW MUCH for this?

The last three days, I've had a care worker come to get me up who I have never had before through the agency I use while in Kansas (yes, I'm still here, hiding from huricanes). This woman used to work in a nursing home and for whatever reason decided she'd rather do home care instead.

Apparently, the reason was not to listen to the person she is helping and argue every little detail.

The first day was frustrating and took a while, but that's normal. Yesterday, after she left, I decided I didn't like her. Today, BEFORE she left I decided I REALLY didn't like her. It all boils down to two things: she doesn't listen to what I'm trying to tell her, and if she can't see it then it must not be true.

My big frustration yesterday involved positioning in my chair. I will be the first to admit that getting me in a position in my chair to where I can function normally (for me) is a royal pain in the ass. I told this lady this on the first day, but I also told her that with a bit of patience, it would happen. Silly me -- I forgot to mention listening to the person being positioned. Bad Dawn -- no cookie. When I asked her to move my left leg, I quite specifically said to please pull on my pants leg on the inside of my thigh. Instead, she first moved my foot (which did nothing for getting my hip comfortable), then she pushed on the outside of my knee joint. My left knee has next to no decent muscle or tendon holding the joint together, so it is very floppy. When you push on the outside part of the joint, my knee moves in but my hip and foot stay where they originally were, putting my knee at an angle it is not supposed to be in short of getting your butt kicked in a Vin Diesel movie. Needless to say, it hurts. That whole task ended with me calling to Mom (she of having JUST had a total knee replacement a mere three weeks ago) to have her get me comfortable.

Today's frustration involved underwear.

A) It is not comfortable to have the waistband of my undies sitting crossways on my anus in general (because they were pulled up on one hip but not yet the other), but it's freaking tear-worthy to have said waistband pulled forcibly across said anus because you're trying to "straighten" the waistband where it sits below the hip rather than pulling it up into proper hip position first. Loud, irritated voice winds up being heard because through the "straightening," I was trying to get her to pull the damned things up first. She kept saying to me, "I can see it's crooked. Just let me finish before I do what you're saying." My response was, "I can feel what this fiction is doing to my anus, so just pull up the underwear."

B) After peeing, when the left side of my underwear gets caught in the elastic band of my pants on the left side and thus come up crooked and giving me a wedgy, STOP FREAKING OBSESSING OVER THE FREAKING ROLLED RIGHT WAISTBAND AND STRAIGHTEN THE FREAKING UNDERWEAR, preferrably after the first time I tell you that's what's wrong.

And do you know she actually had the NERVE to ask me why I was so tense this morning!!!

"Because you won't listen to me!" I practically shouted at her. "I'm trying to make your task easier, but you just keep doing what you want to do."

"But I can see this roll here . . . ."

I surpressed the scream trying to boil out. "That is partly because my underwear is twisted to the left. If you could shift it to the right, it may help."

"I don't understand."

What is so hard about what I said to her, would anyone who's reading this PLEASE explain it to me?

At this point, Mom came in and got me positioned in my chair. Why am I paying $16.50 a hour to an agency when the person they send to help me can't understand "move my underwear to the right" and my recovering-from-surgery mother does the hard work???

Thank goodness my regular worker comes tomorrow.

Who's the idiot here?

As seen via another blog, a story about a man cranked off about to whom his donated computer was given and the rebuilder's response to the jackass.

Birthday Prezzies to Myself

I just ordered these for myself.


Amber and jet earrings with acorn and oak leaf accents





Scottish thistle set with amethyst and aventurine





So pretty, yeah?

Webpages for Jessica

At right, I've added two links to webpages that have been created in memory of my friend Jessica. The Blogger page has pictures, and the Facebook page has links to news articles relating to her death.

You never think it will happen to someone you know

I found out a couple of hours ago that a woman I know, Jessica, was stabbed to death in her own home over the weekend. She used to be a grad student here in my department, and she was one of my officemates two years ago. I didn't know her well, but I liked her.

They say if you live in New Orleans long enough, you'll know someone who will be a victim of violent crime. I was hoping I wouldn't live here that long.

Powerful

A great video about ableist language.

Leaving on a Jet Plane

Back to NO tomorrow. I'll check in with y'all on Tuesday.

Endoscopy = weird acid trip

I finally had the esophageal-gastric-duodenal endoscope yesterday. Upon arrival, we had the usual drama of trying to get blood out and an I.V. in -- tell me, how I am I going to keep myself properly hydrated to make those tasks easier when I'm not allowed to have anything by mouth after midnight and you wait to stick needles in me until 2:00ish in the afternoon? Once veins were found, the processes were surprisingly easy, especially considering there wasn't a vein digger in the bunch. The RN got my I.V. on one smooth try, but the vein wouldn't give up any blood. That warranted a second stick on the inside of my left wrist (not too fond of sticks in the wrist), but it gave up about four milliliters of blood which was sufficient for the required tests using the new tiny tubes.

That all settled, I motored back to the surgery area (not easy with an I.V. in the back of my driving hand, but I didn't want to give up control and let someone push me) in my wheelchair since everyone agreed that doing the scope was feasible with me in my chair as opposed to transferring me to another chair to which my body is not accustomed. I sat for a few minutes in the surgery anteroom while they waited for my labs to come back -- not pregnant, hemoglobin and hematocrit low but better than last week, clotting time and blood thinness within parameters acceptable for performing an endoscope. The anesthesiologist, Ryan, gave me three meds in my I.V. and then we chatted a bit before me driving back to the scope room. As I started driving, I got a little lightheaded and felt like I could take a nap. Since I was pretty sure Ryan had said he wasn't giving me Versed until I was in the room and parked so as not to impair my driving ability, I asked him what he'd shot me full of. "Are you a little sleepy?" he asked. At my my affirmative reply, he said, "That's the Benadryl doing that. I haven't given you any happy, floaty drugs yet." Yeah, well, I was feeling pretty happy and floaty. I asked for and received a pillow on which to rest my I.V. hand, but it was traded after seconds for a less bulky warm blanket, and another warm blanket was draped around me. Mmmmmm, I love those warm blankets!

I was hooked to blood pressure and oxygen monitors, and an oxygen canula was placed in my nose. The surgeon came in, and I was given one milligram of Versed. I remember the anesthesiology intern injecting the Versed into my I.V., I remember Ryan saying they'd give me the Versed in milligram increments while watching my respiration (it depresses respiration, NOT COOL in someone such as myself with restrictive lung disease), and I remember Ryan telling me to tell the doctor what I'm working on at UNO. I think I started to, but . . .



. . . that's where everything got freaky.



Ryan says he's amazed I remember as much as I do of what happened next. I'll just start my recollection by reiterating the first thing I remember saying upon "waking up":

Whoa. I will never do LSD.

It seems that the drug I was given to put me in a relaxed state for the scope but wouldn't seriously depress my respiration (not at the dose/amount used) and would in fact also act as a bronchodilator was ketamine -- the stuff known as Special K, the stuff that acts like PCP. Typicallly, a patient given Versed before ketamine will not trip or will not remember that they tripped.

As we all know, I am not typical. I tripped. Boy, did I trip.

In front of me through it all, acting as a backdrop for my images, was what I later called "the kaleidoscope from hell," but I'm not sure why. It was an ever-revolving, 1960s-like psychedelic screen of red, orange, pink, blue, and green. It was frightening yet mesmerizing all at once. In front of that, doing a wonky dance to the soundtrack in my head or just sitting still and being menacing, was a disembodied tongue -- think of those Coke Zero commercials with the two redneck-sounding tongues and the French-sounding eyeball. That tongue was freaking my s--- out because it wasn't there to drink up Coke Zero. Then I felt like someone was using one of those drain snakes on my throat, turning it 'round and 'round. I wanted to tell the jerk who was doing it to stop, but of course I couldn't speak -- and to make matters worse, he wasn't picking up the mental STOP signals I was sending him via telepathy. Jerk. Then my mouth became a volcano, spewing forth not lava but endoscope lubricant. I would choke and then it would fly out like thrown rock and ash, or it would work up little by little and ooze out.

As I started to wake up, I have vague memories of the following:

-- Sitting my head up, blinking around the room, and saying, "Whoa. Whoa! I will never do LSD." Apparently, Ryan and the intern found this an extremely amusing first thing to say.

-- Sticking out my tongue and grunting for Ryan to wipe lubricant off my tongue. He obediently did so. Such a good anesthesiologist.

-- Giving the nurse instructions on how to release the clutches on my power chair. I don't know how intelligible I was (I kinda feel like I was mumbling) or how well I did giving instructions, but the clutches were off and I was in another room when I really became conscious.

-- Saying, "I heard music" (in my head during the trip), which reminded the staff to turn off the surgery room stereo. I wanted to ask the staff if a Poison song had played during my procedure because I had a Poison song stuck in my head the rest of the day.

-- Telling the nurse not to drive my feet into anything. I think someone told me he was a good driver, and I'm pretty sure I had my doubts.

Afterwards, I woke up fine and dandy, though with a very sore throat, obviously. It was a volcano, you know. My esophagus, tummy, and upper duodenum have been given a clean bill of health -- no ulcers, lesions, or polyps, just healthy pink tissue -- so I guess it was worth the trip. He he.

Get real!

I just read this and wanted to share.


Taking The Risk: Permission To Be Real

Most of us are familiar with the idea of keeping it real and have an intuitive sense about what that means. People who keep it real don’t hide behind a mask to keep themselves safe from their fear of how they might be perceived. They don’t present a false self in order to appear more perfect, more powerful, or more independent. People who keep it real present themselves as they truly are, the good parts and the parts most of us would rather hide, sharing their full selves with the people who are lucky enough to know them.

Being real in this way is not an easy thing to do as we live in a culture that often shows us images of physical and material perfection. As a result, we all want to look younger, thinner, wealthier, and more successful. We are rewarded externally when we succeed at this masquerade, but people who are real remind us that, internally, we suffer. Whenever we feel that who we are is not enough and that we need to be bigger, better, or more exciting, we send a message to ourselves that we are not enough. Meanwhile, people who are not trying to be something more than they are walk into a room and bring a feeling of ease, humor, and warmth with them. They acknowledge their wrinkles and laugh at their personal eccentricities without putting themselves down.

People like this inspire us to let go of our own defenses and relax for a moment in the truth of who we really are. In their presence, we feel safe enough to take off our masks and experience the freedom of not hiding behind a barrier. Those of us who were lucky enough to have a parent who was able to keep it real may find it easier to be that way ourselves. The rest of us may have to work a little harder to let go of our pretenses and share the beauty and humor of our real selves. Our reward for taking such a risk is that as we do, we will attract and inspire others, giving them the permission to be real too.

© 2004-08 DailyOM - All Rights Reserved
From dailyom.com



May you be comfortable discarding your mask, even if it's only with a few people. May you have friends/family who are comfortable in discarding their masks.

May you give yourself permission to be real.

The Wienie Wagon gets TOSSED!!!

This afternoon, my mom drove me into town for my physical therapy appointment at the hospital. I've been going there twice a week since I got home to stretch the muscles in my lower back and relieve some of the pain I'm experiencing from squished spinal nerves (the result of almost 37 years of sitting in a wheelchair).

First, let me give you a picture of my ride while I'm home. Some of you know the Wienie Wagon well (only TOO well, you might say), but for those of you who don't: it's a 1974 extended Dodge Maxivan with a turtle top that's painted like an ambulance (all white with a broad orange stripe down the side) because that's what it was for 20+ years before my brother bought it for $800. My dad stripped it of the extra lights and the siren and replaced the backwards-reading "AMBULANCE" sign on the turtle top's front with a new sign which reads, "WIENIE WAGON" (wienie being one of my brother's familial nicknames). It still contains cabinets down one side for storage (complete with non-operating switches for non-existent oxygen), ceiling hooks for hanging I.V. bags, and a jumpseat in the back which still has its seatbelt.

So, the town we drove to is one of those smallish towns which are "big" for Kansas, and very rarely do people bother rolling up the windows or locking the doors on certain vehicles while they go into the grocery store, vet, or P.T. appointment (at the hospital). I mean, who thinks they're getting very far with a 3/4 ton van with a hydraulic wheelchair lift in the side and a "WIENIE WAGON" sign on the turtle top -- especially when the driver has turned off the batteries?

So, we came out after P.T., and Mom opened the side doors to let down the lift. We noticed that the battery charger which is normally stored in a box at the back was sitting just behind the front seats where I park my wheelchair. I got in the van, and as Mom stowed my transfer lift in the back, I noticed all kinds of things in new places -- a power steering fluid bottle that had been under the seat was also where I park, the horse dewormers were lying in different positions, and a tissue box which had been under the seat was on the console. I pointed out all this to Mom when she climbed into the driver's seat along with a bunch of trash out of its container lying between the seats. She started putting things back to rights, and that's when she noticed something missing.

A small brown prescription bottle.

The sneaky punks made off with . . .








THE DOG DEWORMER!!!

::falls out of wheelchair laughing::

You know SOMEWHERE in McPherson somebody is wondering why s/he's not high right now -- because you KNOW they were thinking, "Ambulance. Windows down. Let's get their good stuff!"

No go

The esophageal/gastric/duodenal endoscope I was supposed to have yesterday didn't happen because my blood was still too thin. Grrrrr! The surgeon's nurse called me today to say they're either going to get me into another surgeon or she has "another idea" to get me in next week.

Would someone please tell me why I allot two months for things when all my doctors wait to do everything in my last 2-3 weeks here? ::sigh::

Something to think about

As seen on lupabitch's LJ (thank you for letting me snag):

Indeed, there would be no hatred of others without hatred of self. If we truly felt good about ourselves, we would have no interest in wasting precious life energy resenting or attacking anyone. The urge to blame others arises only out of feeling bad about ourselves, which originally developed out of not feeling truly seen or honored by other people. Self-hatred is the hidden underbelly of all violence and nastiness in the world.

--John Welwood, Perfect Love, Imperfect Relationships: Healing the Wound of the Heart, p. 97

Nothing new

Just checking in. Got back to physical therapy this week after a two week hiatus. I'm really going to have figure out which of my friends I can train as an amateur PT when I get back to NO. The muscle massage and the stretches make my back feel SOOOOOOO much better.

Two faces of SMA

First, my sister Stacy. This is one of my favorite pictures of her, taken when she was about 20. She was 27 when she died.




This is a closeup of her headstone. Don't mind my mom's shadow there.




This shows the entire headstone mounting. The turtle statue is painted to appear like Poe (as in Edgar Allen, her favorite author), her pet at the time of her death. Her best friend's son inherited him.




My brother Paul. He took this picture of himself with his webcam a couple of years ago.




A closeup of his headstone. He was a computer geek and gamer, and he was an English lit major.




The full mounting. Since the concrete company had nothing resembling books (not even books as bookends), my parents opted for this Celtic cross as an homage to his interest in Medieval history and literature.

Health update and goals

Sorry it's taken so long, but there wasn't anything to report on the hemoglobin situation until this week. My GP simply did another blood test (Hb still low), told me to take double the Prevacid until I was checked for an ulcer, gave me hemocult cards to check my stools for blood (big negative there, thank your Higher power), and referred me to the surgeon. I saw the surgeon this week, and he was at first as confused as I was about why I was there. He called my GP so they could consult, and they came to the conclusion to check my esophagus, stomach, and upper duodenum (first part of the small intestine) for an ulcer using a scope and to see if my uterus is building up too much lining during my cycle using a sonogram. I do the sono on Tuesday and the scope on the 30th. The surgeon said if he had to go to Vegas and bet money at the Anemia Game, he'd put his money on my heavy periods combined with the coumadin I'm on for my November blood clot.

Interestingly, my friend Lance (who also has SMA and is a year older than me) emailed me a day or so later with another possibility that, though slimmer than the period/coumadin cause, is something I should still be aware of and get someone (whether my GP or my pulmonologist) to monitor -- hypercapnia, or high blood carbon dioxide. I don't think high CO2 will cause low Hb, but it can cause the symptoms of low oxygen in the tissues if its concentration is high enough that it occupies more Hb sites than does O2. He pointed out that while sleeping with O2 at night will increase my blood-ox levels, if I am shallow breathing while asleep (and I do to some degree), I may not be eliminating enough CO2 upon exhaling. His youngest sister (who also had SMA) did this, and she may have died because of it (if I read his email correctly -- please correct me if I'm wrong, Lance).

So, I'm practicing breathing more deeply, because I have stuff to do before I kick the bucket.

In other news, I'm suffering from strained muscles in a couple of toes on my right foot after they got caught in my jeans while dressing the other day and were hyperextended (well, for me). It's a darn good thing I don't walk, because those little piggies go "wah wah WAH" when they're bent backwards.

So, drastic change of topic -- seemingly, but hopefully my change of approach will become logical in a moment. We found out a few days ago that the monument company had "snuck out" (meaning, they didn't call my dad first as he had requested) and set my brother's headstone on July 3. My dad was a bit peeved because the main reason he wanted to be notified was so he could meet them at the cemetary and get them to lay the foundation for the stone longer than necessary and set the headstone to one side rather than centered. Fortunately, the setters had gotten the memo. We went out the day after learning the stone was set to mount a Celtic cross on the foundation next to the stone.

Going to my sister's and my brother's graves made me pretty morose for a while that evening. It's been seven and a half months since Paul's death, and I'm still dealing with anger and depression. Then a day or so later, my friend Edie emailed to ask if I'd ever seen pictures that were taken when my folks accepted P's posthumous master's degree. They also received my sister's bachelor's degree in the mail a few months after her death. This got me thinking about my current Ph.D. endeavors and stupid little health problems. I mean, they always start out stupid and little, right? I wondered if these health problems of the last two years after more than twenty years of nothing serious was just an accelerated opening act to my own dropped curtain.

But there's something here I'm really truly down in my soul starting to realize -- I want to be alive when I receive my Ph.D. I want to have to scrimp and save for the gown and hood so I can go across the graduation stage, flipping the bird to SMA. I want to do the General Exam and the dissertation defense, as scary as those are, and I want my parents there and at the graduation. I want to see my work published and referenced. I want to get a job and drive students nuts with the things I want them to learn. I want them to think I'm either extremely enthusiastic or just a bit bonkers as I extoll, "Mendel rocks!" I want more and more people to not think it's a big deal to have a teacher sitting crookedly in a power wheelchair who paces while she lectures.

So you see, I'm far from done yet. I have all those things to do, but not just for myself anymore. Now I'm doing it for my sister and my brother, too.

Oh, what a stressful, crazy, amazing, rewarding thing it will be!

Dreaming and Memorials

I had the strangest dream of buying jewelry this morning. I was looking at seahorse earrings carved entirely of amber and getting irritated that they were so expensive. There were some bronze ones that were cheaper, but I didn't want them because I knew they'd tangle in my hair. There were turtle/tortoise rings also made of bronze that I was considering. Late in the dream, I went to slip a silver band of leaves on my left ring finger, and I saw an elephant head carved from bone already there. The ends of its ears were broken off, and that made me sad.

I'm probably getting a stylized turtle tattoo this afternoon as a memorial for my sister. I found this one online and knew it was perfect:



On mine, the shell knot will be yellow while the leg bands, eyes, and tail will be orange -- Stacy's favorite colors. The toenails of each foot will be different colors (one color for each foot) -- red, yellow, black, and white -- for the Lakota medicine wheel. In the months before her death, Stacy was becoming more and more interested in our Scottish/Celtic and Lakota heritages, and turtle was her primary totem. I almost have this feeling my sister is trying to bind turtle to me.

I'm also going to get a line or two of one of Paul's poems for his memorial. I don't think I'll get it today, but definitely before I go back to NO. This is the poem I've chosen -- it's one I've carried with me for a long time:

Words Never Spoken

Love never sought can never be found,
Through the storm raging beyond and within.
Quiet yourself and wonder how
My words remain with you long after
The sound has fled away. When all is still
Except your thundering soul; Look beyond
The fears your mind contrives to send
Your heart to distract: Listen to my words
Never spoken, but silently heard to
Engage your heart in this glorious meaning
To this life, often meaningless.

We Are The Ones

We Are The Ones

You have been telling the people,
That this is the eleventh hour.
Now, you must go and tell the people,
That THIS is the hour,
And there are things to be considered.

Where are you living? What are you doing?
What are your relationships?
Are you in the right relationship?
Where is your water?

Know your garden ...

It is time to speak your truth.
Create your community,
Be good to each other.
Do not look outside yourself for a leader.

There is a river flowing now very fast,
It is so great and swift.
That there are those who will be afraid,
They will try to hold onto the shore.
They will feel they are being pulled apart,
And will suffer greatly.

Understand that the river knows its destination,
The elders say we must let go of the shore.
Push off into the middle of the river,
Keep our eyes open and our heads above water.

And I say; see who is in there with you,
Hold fast to them and celebrate!

At this time in history,
We are to take nothing personally.
Least of all, ourselves!
For the moment we do,
Our spiritual growth and journey comes to an end.

The time of the Lone Wolf is over!

Gather yourselves!

Banish the word 'struggle' from
Your attitude and vocabulary.
All that we do now must be done,
In a sacred manner and in celebration.

We are all about to go on a journey,
We are the ones we have been waiting for!

Thomas Banyacya Sr. (1910-1999);
Speaker of the Wolf, Fox and Coyote Clan
Elder of the Hopi Nation

Long time, no post

Where does time go when you're focused on the details of your life? Seriously -- I can't believe it's the middle of June already.

I've been away for a while, so let me see if I can catch you up.

The day after I went to see the Indiana Jones movie, I woke up to two disturbing discoveries: my laptop did not recognize it was hooked up to the cable modem, and my VCR/DVD player would not turn on. I was not happy. I have not been able to figure out how to fix either one. We had a pretty decent line of storms come through the night before, and my friend William thinks I may have experienced a surge through the cable outlet (not the electrical since the laptop and VCR/DVD are on separate surge protectors and other items plugged in with them are still functioning properly).

So, I've been having to do all my Internet from the lab, thus the lack of blogging. It's hard to do fun stuff in the place where you're supposed to be working.

The week before last, I had some routine blood work done by our campus's student health, and my hemoglobin (Hb, the protein that carries oxygen in your red blood cells, RBCs) and hematocrit (the volume of RBCs relative to total blood volume) both came back "extremely low" -- as in, my Hb was 8.2, and they start considering giving a blood transfusion at 8.0. I was told I needed to go to the ER "right away."

To say I was not looking forward to that is an understatement. The short version is this: I got there at 7:30 p.m., and I left at around 6:00 a.m. All they did was stick me seven or eight times for an I.V. they never used, they ran the same tests as student health and got the same results, they told me to take iron pills, and the head nurse tried to bully me.

When I was finally taken back to a curtained bed (after a four hour wait), the triage nurse told me I needed to get in the bed, strip down, and put on their crappy little gown. I looked her full in the eye and said, "I'd prefer to stay clothed and in my wheelchair." I then explained why:

1. The beds are extremely uncomfortable because they hit every pressure point I have and then find new ones. After about two hours, I need painkillers because I hurt so much, and let's just say I'm not talking about Tylenol or Advil. (I wanted all my wits about me because I'd dealt with this ER and its pushy nurses before -- remember when I had my blood clot diagnosed in November?)

2. I knew they were going to want blood, and maybe to start an I.V., so I needed to keep myself as warm as possible so my veins would be dilated and near the surface. (I'm a hard stick, and I know a few tricks to facilitate the blood drawing.) That was why I was wearing a hoodie when it was 85F outside.

What I didn't say was that it's easier for them to treat me like a mindless cripple if I'm in the bed. I'm more defenseless because I can't just leave, and some medical folks feed on that like shark on chum.

The nurse shrugged her shoulders and left, but very shortly thereafter the nurse administrator came in, again trying to get me stripped and in the bed. I again said I preferred to stay in my wheelchair and why.

Nurse Admin: They may need to draw blood and start an I.V.

Me: I'm certain of it, but I prefer to stay in my chair.

Nurse Admin: They can't do either of those things unless you're in the bed.

Me: That's not true. I've had blood drawn dozens of times while sitting in my chair, and I've also had I.V.s started.

Nurse Admin: If they have to give you blood, you'll have to be admitted.

Me: I'm aware of that, but I still prefer to stay in my chair. If I'm admitted, I'll change and get in the bed.

Nurse Admin: If your I.V. is already started, you won't be able to change.

Me: That's not true, either. You can saline or heparin lock the I.V., disconnect it, and then I can change.

Is it just me, or do some nurses get really peeved when you know their procedures as well as they do?

Battle won by me. I got to stay in my chair.

After spending all night in the ER just to be told to take iron pills and see my GP as soon as possible, I went home and got about three and a half hours of sleep before my bladder woke me up. I said screw it, got up, ate, and went to the lab to work. Since it was Saturday, it was deserted in my building, and that suited me just fine since I don't deal well with other humans on three and a half hours of sleep. I changed my plane tickets home from the 23rd to the 10th.

After a busy couple of days finishing measurements (about two hours in the lab on Saturday and about five on Sunday), cleaning my office desk to see what papers and books I needed to pack, and actually packing (one suitcase full of research material, one of clothes, medicine, food for Reba, wheelchair battery charger, and a couple of fun books), I headed to the airport. Everything went so smoothly -- too smoothly -- that I should've known something was going to happen. We got on the plane, taxied, and were held on the tarmac due to weather in Houston (my connection between NO and Wichita). Thirty minutes later, we returned to the gate because Houston had closed due to 50 m.p.h. winds and hail. Everyone but me deplaned -- I didn't see any reason to go through all the transferring if Houston reopened in another thirty minutes. Four hours later, I decided to get off as everyone was finally allowed back on the plane -- it was 4:00 p.m., I hadn't peed since 10:30 a.m., and I knew there was no way I'd be able to hold my bladder until a 9:00/9:30 p.m. arrival in Wichita. I went home, slept, and tried again the next day. I made it then, and now I am at the folks' until 11 August.

On Thursday, I saw my doc who was shocked the ER doc didn't do more than take my blood. He sent me to the hospital lab for more blood (do I feel like a vamp donor yet?), gave me some hemocult cards to smear with poo to check for intestinal bleeding (at least I didn't have to be probed), told me to double up on my Prevacid (I guess to try to control acid production in case I have an ulcer?), and said I might have to be scoped at both ends (oh joy!). He also wrote me a rec for physical therapy at my request. My lower back is becoming progressively more swayed and compressed, and it's causing issues. I know no one will want to do surgery for it, and I don't want to start down the painkiller route just yet, so I've asked my PT Melani to teach me stretches that I can then teach my attendants to stretch and decompress what I can.

That's pretty much it for now. G'night.