Eleven years ago, the first of two events occurred that I never thought I'd have to handle -- my younger sister died of respiratory distress related to spinal muscular atrophy.
I miss you, Stacy.
Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts
Saturday, January 21, 2012
Saturday, December 3, 2011
We're in the money
The ceremony for the Peter John Loux award was Thursday, 1 December. Both of my parents and one of my best friends attended. I figured they'd read a bio of us -- which is embarrassing enough -- but they made each of us stand at the front of the room while they did. Awkward! As I've mentioned before, I don't see myself as doing anything particularly noteworthy or "inspiring", so watching people make a big deal out of me getting a BS and MS and working on my Ph.D. makes me uncomfortable. As for the disability activism, someone has to do it, but no one WAS doing it.
After, the folks, my friend, and I went to Bella Luna for lunch. I said screw my diet and had hummus and the six-cheese pasta. I requested grilled shrimp on top of the pasta, but it was delivered with grilled chicken. I mentioned this to the waiter, and he said, "Go ahead and eat that, and I'll get you some shrimp too." Bonus!
It was a great day, despite the cold.
After, the folks, my friend, and I went to Bella Luna for lunch. I said screw my diet and had hummus and the six-cheese pasta. I requested grilled shrimp on top of the pasta, but it was delivered with grilled chicken. I mentioned this to the waiter, and he said, "Go ahead and eat that, and I'll get you some shrimp too." Bonus!
It was a great day, despite the cold.
Wednesday, November 9, 2011
And the winner is . . .
I just received a letter from the Cerebral Palsy Research Foundation that I am one of this year's recipients of the Peter John Loux Award. The award is given "in recognition and honor of an outstanding Kansan who has demonstrated exceptional desire and dedication in overcoming the difficulties caused by physical or neurological disabilities." My friend MF nominated me, and my friends SB and AF and my aunt CS sent letters of support.
I receive $1000 which will go into my "special needs" trust with my Wreck settlement.
Guess I'd better finish setting up the trust.
I receive $1000 which will go into my "special needs" trust with my Wreck settlement.
Guess I'd better finish setting up the trust.
Tuesday, August 9, 2011
Gimps unite!
Mom and I are heading out of town tomorrow to attend a disability caucus. We'll get home Friday afternoon or evening. I've never been to one of these, so it'll be interesting. Tomorrow's highlight is a performance by Flame, a rock group made up completely of people with disabilities.
Everyone be nice to each other and share your toys while I'm gone. *hugs*
Everyone be nice to each other and share your toys while I'm gone. *hugs*
Saturday, February 19, 2011
Ouch!
If this "cold front" that's moving through the state today is making my legs ache like this, I have a horrible feeling that Spring with all its thunderstorms is going to be hell.
Yay.
Yay.
Tuesday, January 25, 2011
Saturday, January 1, 2011
2010 in Review
As I lay in bed late last night (early this morning) listening to the fireworks and gunshots ringing in the new year, I was momentarily depressed as I realized I had spent more than half the year in rehab. I'd lost my entire summer and fall, and I'd spent my birthday and favorite holiday (Halloween) locked up. My poor, dear Moby suffered an early, untimely, and certainly undeserved demise at the hands of a careless young man.
My body, as though not experiencing enough physical challenges, was busted all to hell, resulting in me being pinned and plated and rodded to the point that I now have more hardware inside me than a Home Depot. I thought of all the rough things my friends have also gone through this year.
But suddenly I thought, "Wait. It's the first hour of a new year, and thinking of the negatives is not the way to start it." So instead, I started thinking about the good things that have happened in 2010, and suddenly I realized that even though so many bad things have happened, some pretty amazing things have happened, too.
March -- My cousin Josh and his wife Kyla welcomed the newest member of their family, Makynna Lynnlee. "Kenya" (a slip of one of her sisters' tongue) is Josh's fourth and Kyla's second.
March -- I was introduced to the group Great Big Sea ("from the tropical island of Newfoundland") via a concert my friend Lynlee took me to.
March -- My friends Jonikka and Erik were married on the Spring Equinox. I was the maid of honor.
April -- I received notification that I had been awarded one of the prestigious Ford Fellowships to help me complete my dissertation.
April? -- My friend Suzanne successfully completed her Ed.D. at UCSD.
May -- My friend Anita quit her job. You might think this would be a bad (maybe even a horrible) thing, but if you knew even half the s--- she had to put up with from her boss, you'd realize how fabulous this is.
June -- My cousin Amanda and her husband Jim welcomed the newest member of their family, Grace Ellen. She is Amanda's first and Jim's third.
July -- I got up in my chair for the first time in a month.
August -- I went with my folks to see Celtic Woman in concert. Fab. U. Lous.
August -- I celebrated my 39th birthday. Many people dread birthdays of this magnitude, but not me. According to the doctors in London who diagnosed me when I was 3, I wasn't supposed to live past 20. Every birthday since then has been a celebration.
October -- My fluctuating asymmetry review -- on which I'd been writing and rewriting for four years and had submitted to three journals -- was finally accepted for publication by Reviews in Fish Biology and Fisheries.
October -- I officially became eligible for the state program "Money Follows the Person" because I had been in rehab at least 90 days. This program automatically gets me paid attendant care at home when I finally escape this joint -- something I've been trying to get since I moved back to Kansas last December.
November -- My friend Marrus married her very own G.I. Joe (term used affectionately) in a "shotgun" wedding as Jay will be deployed very soon. You can see their custom cupcake topper and a picture of their gorgeous selves on Marrus's LJ.
November -- I got to go home for the first time in six months.
November -- My friend Amanda and her husband Roger welcomed the newest member of their family, Kaylynn Lee. Kay was a little early and experienced some respiratory issues, but to my knowledge she is now doing well. She is Amanda and Roger's first.
November -- My friend Anita successfully completed her masters thesis at WSU. She was so amazing.
December -- I was contacted by a masters student in the Philippines and a professor in Germany requesting copies of my review as their universities do not have subscriptions to that journal.
So now, my goals for the year. I really only have two major ones. First, I'm getting out of this rehab hell. Seven months is far too long for someone like me to be locked up, and it's time to go home. Second, I'm completing my Ph.D. It might take me until November, but you can put money on being able to call me Doctor Dawn no later than Christmas. Early notice to my New Orleans tribe -- you are hereby invited to my dissertation presentation and to my hooding at graduation, and we should start planning where to have my celebration. As to that last, there had better be fruity-rum drinks involved! To my biological family and to my Kansas pack -- anyone who wishes/is able to come to either the defense or the hooding is soooo welcome!
Finally, I'd like to thank everyone who has been so supportive of me over the last seven months. Your visits, calls, and emails have really helped keep me sane. I love you all, and I hope your 2011 is filled to overflowing with love, happiness, and blessings in your personal and professional endeavors.
My body, as though not experiencing enough physical challenges, was busted all to hell, resulting in me being pinned and plated and rodded to the point that I now have more hardware inside me than a Home Depot. I thought of all the rough things my friends have also gone through this year.
But suddenly I thought, "Wait. It's the first hour of a new year, and thinking of the negatives is not the way to start it." So instead, I started thinking about the good things that have happened in 2010, and suddenly I realized that even though so many bad things have happened, some pretty amazing things have happened, too.
March -- My cousin Josh and his wife Kyla welcomed the newest member of their family, Makynna Lynnlee. "Kenya" (a slip of one of her sisters' tongue) is Josh's fourth and Kyla's second.
March -- I was introduced to the group Great Big Sea ("from the tropical island of Newfoundland") via a concert my friend Lynlee took me to.
March -- My friends Jonikka and Erik were married on the Spring Equinox. I was the maid of honor.
April -- I received notification that I had been awarded one of the prestigious Ford Fellowships to help me complete my dissertation.
April? -- My friend Suzanne successfully completed her Ed.D. at UCSD.
May -- My friend Anita quit her job. You might think this would be a bad (maybe even a horrible) thing, but if you knew even half the s--- she had to put up with from her boss, you'd realize how fabulous this is.
June -- My cousin Amanda and her husband Jim welcomed the newest member of their family, Grace Ellen. She is Amanda's first and Jim's third.
July -- I got up in my chair for the first time in a month.
August -- I went with my folks to see Celtic Woman in concert. Fab. U. Lous.
August -- I celebrated my 39th birthday. Many people dread birthdays of this magnitude, but not me. According to the doctors in London who diagnosed me when I was 3, I wasn't supposed to live past 20. Every birthday since then has been a celebration.
October -- My fluctuating asymmetry review -- on which I'd been writing and rewriting for four years and had submitted to three journals -- was finally accepted for publication by Reviews in Fish Biology and Fisheries.
October -- I officially became eligible for the state program "Money Follows the Person" because I had been in rehab at least 90 days. This program automatically gets me paid attendant care at home when I finally escape this joint -- something I've been trying to get since I moved back to Kansas last December.
November -- My friend Marrus married her very own G.I. Joe (term used affectionately) in a "shotgun" wedding as Jay will be deployed very soon. You can see their custom cupcake topper and a picture of their gorgeous selves on Marrus's LJ.
November -- I got to go home for the first time in six months.
November -- My friend Amanda and her husband Roger welcomed the newest member of their family, Kaylynn Lee. Kay was a little early and experienced some respiratory issues, but to my knowledge she is now doing well. She is Amanda and Roger's first.
November -- My friend Anita successfully completed her masters thesis at WSU. She was so amazing.
December -- I was contacted by a masters student in the Philippines and a professor in Germany requesting copies of my review as their universities do not have subscriptions to that journal.
So now, my goals for the year. I really only have two major ones. First, I'm getting out of this rehab hell. Seven months is far too long for someone like me to be locked up, and it's time to go home. Second, I'm completing my Ph.D. It might take me until November, but you can put money on being able to call me Doctor Dawn no later than Christmas. Early notice to my New Orleans tribe -- you are hereby invited to my dissertation presentation and to my hooding at graduation, and we should start planning where to have my celebration. As to that last, there had better be fruity-rum drinks involved! To my biological family and to my Kansas pack -- anyone who wishes/is able to come to either the defense or the hooding is soooo welcome!
Finally, I'd like to thank everyone who has been so supportive of me over the last seven months. Your visits, calls, and emails have really helped keep me sane. I love you all, and I hope your 2011 is filled to overflowing with love, happiness, and blessings in your personal and professional endeavors.
Tuesday, November 2, 2010
Steamed
Somebody in the voter registration office dropped the ball and failed to send out the mail-in ballots for all the voters registered here at DH&R -- so now I am not going to able to voice my opinion about our next governor, attorney general, or congress-people. You can bet that I will voice my opinion about the irresponsibility of the voter registration office.
Thursday, September 23, 2010
Still around
Still at the rehab facility. Still healing, though not nearly as quickly as I'd like.
We now return you to your regularly scheduled day.
We now return you to your regularly scheduled day.
Monday, August 9, 2010
Yes, I'm alive
For those who didn't know, I was in a car accident on June 7th in which a 20-year-old failed to pay attention to the large red stop sign in front of him, causing us (my parents, Reba, and myself) to hit him at 50-55 mph. Mom bruised her right hand and knee, Dad had a concussion, Reba's sutures from a surgery that morning tore open, and I broke my right humerus and both femurs and cracked my left tibia and fibula. I underwent a six-hour surgery on June 9th to attach plates and screws to my humerus and right femur and a rod along my left femur. Basically, I now have more hardware in me than a Home Depot.
I was in the hospital for three weeks, then I was transferred to a rehab facility where I still am. I get therapy on my arm five days a week and on my legs six days a week. I'm not healing as quickly as *I* would like, but I am healing. Moby (my van) was totaled, which upset me a lot. She was a good van, and she didn't deserve to go out like that. My folks quickly found me a new ride, though -- a maroon-colored 1993 Ford with a working AC. I have christened her the Red Baron.
Isn't life grand?
I was in the hospital for three weeks, then I was transferred to a rehab facility where I still am. I get therapy on my arm five days a week and on my legs six days a week. I'm not healing as quickly as *I* would like, but I am healing. Moby (my van) was totaled, which upset me a lot. She was a good van, and she didn't deserve to go out like that. My folks quickly found me a new ride, though -- a maroon-colored 1993 Ford with a working AC. I have christened her the Red Baron.
Isn't life grand?
Monday, May 3, 2010
A New Disability History
I have four books on disability that I am currently reading through. I had to order these books -- all of them -- through interlibrary loan because neither of the two public libraries nearest me had ANY of them. I think I will have to talk to their acquisitions person about not only not having these particular books but NO disability books at all. NONE!
The book I'm currently reading is a collection of essays called A New Disability History edited by Paul K. Longmore and Lauri Umansky. I've been keeping track of passages that catch my attention for various reasons. Here are ones I've recorded so far:
"The elision of disabled people from the historiography also surely reflects the 'existential anxiety' that disability often evokes. A considerable literature in psychology verifies that the presence of individuals with disabilities stirs dis-ease in many individuals who view themselves as normal. A more recent literature in cultural studies of disability strongly suggests that those nervous reactions stem from more than individual temperament. To a significant degree, they arise from the most basic of modern, and particularly American, cultural values and social training. Americans often perceive disability – and therefore people with disabilities – as embodying that which Americans fear most: loss of independence, of autonomy, of control; in other words, subjection to fate. The culturally conditioned psychological response to disability may help explain disabled peoples’ [sic] absence from historical accounts. That which we fear, we shun.” [Longmore, PK and Umansky, L. 2001. Introduction. Pp. 1-29 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 6-7]
"The natural and the normal both are ways of establishing the universal, unquestionable good and right. Both are also ways of establishing social hierarchies that justify the denial of legitimacy and certain rights to individuals or groups." [Baynton, DC. 2001. Disability and justification of inequality in American history. Pp. 33-57 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 35]
"Just as the counterpart to the natural was the monstrous, so the opposite of the normal person was the defective. Although normality ostensibly denoted the average, the usual, and the ordinary, in actual usage it functioned as an ideal and excluded only those defined as below average. 'Is the child normal?' was never a question that expressed fear about whether a child had above-average intelligence, motor skills, or beauty. Abnormal signified the subnormal." [Baynton, DC. 2001. Disability and justification of inequality in American history. Pp. 33-57 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 36]
Feel free to discuss any of these as you like. I will post more as I gather them
The book I'm currently reading is a collection of essays called A New Disability History edited by Paul K. Longmore and Lauri Umansky. I've been keeping track of passages that catch my attention for various reasons. Here are ones I've recorded so far:
"The elision of disabled people from the historiography also surely reflects the 'existential anxiety' that disability often evokes. A considerable literature in psychology verifies that the presence of individuals with disabilities stirs dis-ease in many individuals who view themselves as normal. A more recent literature in cultural studies of disability strongly suggests that those nervous reactions stem from more than individual temperament. To a significant degree, they arise from the most basic of modern, and particularly American, cultural values and social training. Americans often perceive disability – and therefore people with disabilities – as embodying that which Americans fear most: loss of independence, of autonomy, of control; in other words, subjection to fate. The culturally conditioned psychological response to disability may help explain disabled peoples’ [sic] absence from historical accounts. That which we fear, we shun.” [Longmore, PK and Umansky, L. 2001. Introduction. Pp. 1-29 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 6-7]
"The natural and the normal both are ways of establishing the universal, unquestionable good and right. Both are also ways of establishing social hierarchies that justify the denial of legitimacy and certain rights to individuals or groups." [Baynton, DC. 2001. Disability and justification of inequality in American history. Pp. 33-57 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 35]
"Just as the counterpart to the natural was the monstrous, so the opposite of the normal person was the defective. Although normality ostensibly denoted the average, the usual, and the ordinary, in actual usage it functioned as an ideal and excluded only those defined as below average. 'Is the child normal?' was never a question that expressed fear about whether a child had above-average intelligence, motor skills, or beauty. Abnormal signified the subnormal." [Baynton, DC. 2001. Disability and justification of inequality in American history. Pp. 33-57 in Longmore, PK and Umansky, L. (editors), The New Disability History – American Perspectives. New York University Press, New York. Quote pp. 36]
Feel free to discuss any of these as you like. I will post more as I gather them
Tuesday, April 27, 2010
ADAPT Blogswarm
(for ADAPT's Spring 2010 action)
It’s no secret that state budgets are coming up short all over the nation, but what many members of the general public do not know or are choosing to ignore is that many states are putting an unfair bulk of budget cuts on the shoulders of people who should not have to bear that load – people with physical and mental disabilities. If the proposed cuts to health and social services in Kansas go through, the lives and freedom of nearly 1900 physically disabled alone will be in jeopardy. These are the people waiting to receive in-home services via the Home and Community Based Services (HCBS) program, but the proposed budget cuts in Kansas will force many, if not all, of them into nursing/group homes where they will have no input into many aspects of their own lives. What the legislators are choosing to ignore is that care in nursing/group homes will cost the state 2-3 times more than providing in-home care. They are also ignoring the fact that the majority of Kansans – including those receiving or wanting to receive services – are willing to pay revenue enhancements in the form of a one cent increase in the state sales tax and increased taxation of tobacco, alcohol, and soda in order to make up the budget deficit.
Please allow me to address the legislators directly.
Just for a moment, I’d like for you to imagine our roles were reversed. Imagine yourself in a wheelchair – unable to cook your own meals, unable to get yourself in and out of bed, unable to use the bathroom without assistance. Would you wish to live in a nursing home where every moment of every day of your life is decided for you, from when to get up to what you will eat to what activities you can participate in? Would you want to only be able to leave the facility for medical appointments unless your family came to get you? How often do you think you realistically would see your family? How often could they fit a visit to you into their busy schedules?
Or would you want to live freely in your own home where you can sleep in if you want to or have pumpkin pie for breakfast or wheel yourself to the library for a book or to the store for a soda? Would you like to take accessible public transportation to a movie or a restaurant or grocery shopping? Do you think you might see your family more in your own home?
It all boils down to this: do you want someone to run your life for you, or do you want to freely and independently do everything your heart desires?
I’m willing to bet you’d choose the latter. Now imagine you are facing these budget cuts, and I am your legislator. What would you say to me? Would you want to go on with the current day politics as usual, where each person, politician and non-politician alike, thinks only about number one and everyone else be damned? Or would you hope I can see beyond that status quo, that I can envision a world where people take care of each other? Wouldn’t you be willing to pay one more cent on the state sales tax if it meant you could sleep comfortably in your own bed with your husband or wife next to you? Wouldn’t you be willing to pay a few more pennies for a soda if it meant you could keep your job and remain a contributing member of your community? Wouldn’t it be worth paying a little extra on your cigarettes if you could play everyday with your children or help them with their homework in your own home?
I am more than willing to pay a little extra on my purchases so that I and nearly 1900 others in my same situation can live in our own homes and still have our most basic needs met. I don’t want to live helplessly in a nursing home. I want to finish my Ph.D. and get a job at a university, maybe even right here in Kansas. I want to continue being a contributing member of my community, and I want to help my fellow human beings whenever she or he has a need.
This issue isn’t about Republicans, Democrats, conservatives, liberals, tea parties, or coffee klatches. This is about humanity. This is about empathy. This is about doing unto others as you would have done unto you. It’s time we as citizens realize we are part of something larger than ourselves, that in order for our society at large to function in the healthiest possible manner that EVERY part must be healthy and happy. It’s FAR past time for the disabled, the elderly, the ill, and the abused to be treated with equal consideration, respect, and dignity rather than as society’s trash.
Read more blogswarm at ADAPT Blogswarm, Spring Action 2010 hosted by Nick's Crusade.
Thursday, October 29, 2009
The worst thing . . .
. . . about science is the writing. I loathe the writing even more than figuring out how to run the stats. I dislike it mainly because between how much of it I'm having to do right now and all the measuring of fish heads I'm doing at the same time, my already weak hand and wrist muscles are seriously fatigued. It's times like this when I think having voice recognition software would be a good thing.
Thursday, August 27, 2009
Fun Disability Products
Postcards
Keychains
MFH2: I FIGHT FOR DISABILITY RIGHTS KEYCHAIN by MothersFromHell2
Keychains created online using zazzle
Mugs
Disability Humor - Mug for disabled girls or women by inamar
Make personalized photo mugs on www.zazzle.com
More tomorrow.
Keychains
MFH2: I FIGHT FOR DISABILITY RIGHTS KEYCHAIN by MothersFromHell2
Keychains created online using zazzle
Mugs
Disability Humor - Mug for disabled girls or women by inamar
Make personalized photo mugs on www.zazzle.com
More tomorrow.
Wednesday, June 18, 2008
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.
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.
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