I am sick and tired of trying to figure out how to reliably post pics to my blog, so I am just dumping pics in my flickr account and hoping for the best. Well, the week is starting off just right, with lots of coffee and efficient phone calls made. I'm excited about my parent's visit and the 50th anniv. celebration on Thursday, and I'll also be excited when it's over.
I feel like this week is packed, but I have lots of fun things planned and there may be a special someone in my future tonight or tomorrow. I will keep you updated on that. I guess it's sort of a blind date, as we haven't actually met yet, but I hear he's very cute and has many qualities that I have been searching for for a long time. It's been a while since I have opened my heart to this type of situation, so wish me luck!!
Work continues to go well, with lots of opportunities coming my way, although I'm reluctant to jump into any drastic changes. I am starting to settle into a routine. I am so excited about my upcoming trip to Louisianna in October. At work we have a big statewide conference for self-advocates (men and women with developmental disabilities) that is in Wichita, and I and my co-worker Craig will be saturated in the details of that for the next month, and then we'll actually be at the conference, which will be fun. It's October 6,7,8 in Wichita. I've been there to help the past couple of years, and it's such a cool event for the men and women who participate, including all the people who present in the breakout sessions and keynote, etc. I really like meeting folks from all across the state, including the advisors and staff that attend also. It's pretty cool.
Then the 3rd weekend in Oct. Miss Phyllis is taking me, Becky, and 2 other friends down to Crowley for Rice Festival. I can't wait. It'll be my first trip out of state (Branson does NOT count) in a couple of years, and god knows I am mentally ready for a vacation that does not involve IV needles, morphine, doctors, or liver juice.
I have more pics to upload, will do so later on today.
. . . . Random thoughts about nothing in particular, executed with alternating fits of bitchiness and/or sentimentality.
Monday, August 21, 2006
Thursday, August 17, 2006
Gotta wear shades...
Things are going well... my attitude has taken a sudden turn for the fabulous, and it's a relief not to be kvetching (hi beth) about stuff anymore. I've been keeping very busy with work, meetings, and exercise several days a week. I'm doing the fall session of Dog Days again, and did the Red Dog Run/Walk for the Boys & Girls Club. I and my friends finished dead last in that walk, but hey... 6 months ago I was almost dead, so being dead last ain't so bad.
This almost made me wet my pants today.
I am looking forward to some relaxation this weekend, and must clean the house in anticpation of George and Ginger coming to visit... they're such neat freaks and all. Not.
Work is going so dang well I just want to be here all the time now. My to-do list is doable and yet still interesting, and I'm doing more in the service coordination area so that makes me happy.
Huh. I'm pretty boring when I'm happy, I guess.
This almost made me wet my pants today.
I am looking forward to some relaxation this weekend, and must clean the house in anticpation of George and Ginger coming to visit... they're such neat freaks and all. Not.
Work is going so dang well I just want to be here all the time now. My to-do list is doable and yet still interesting, and I'm doing more in the service coordination area so that makes me happy.
Huh. I'm pretty boring when I'm happy, I guess.
Monday, August 07, 2006
In Memory of David Welton...1934-2006
Some of my happiest years working at CLO was the time that I worked in the Individualized Living Program, which was their first foray into having people live in their own apartments with support people who helped them out throughout the day. I loved all of the guys that I worked with there, and have maintained relationships with them as much as possible through the years.
One of the guys, David, was a fussy old man (he always seemed older than he was). He was meticulous, and slow, and had a very routine way of doing absolutely everything. Once in a while, however, he'd pick up on a phrase or joke and repeat it, and it was always funnier coming from his mouth than from anyone else's. I wasn't always as patient as I should have been with David. I remember one night trying to coax him to hurry and get out of the van, as it was very cold. For years after that, he would repeat my exact words when told to hurry out of the van... "Hurry up, I'm freezing my ass off."
He was amazing at retaining bits of knowledge and being able to identify pieces of classical music and their composers, state capitols, state mottoes, state birds... He was born in 1934, but unlike so many folks born in that time period, he was not sent away to an institution. He lived at home with his mother until she grew too old to properly care for him, and therefore he had many advantages that people who spent significant amounts of time in institutions did not. He had good table manners, a particularly dapper way of dressing, an interest in reading the Kansas City Star (particularly the automotive section) and loved many types of music. He and I used to warble Cole Porter songs to each other as I helped him get ready for bed at night. He loved to go to concerts, plays, and out for meals. He loved visiting his mother in Tonganoxie, and remembered exactly who lived in what house from years before. He loved his roommates, and they took great pride in "helping him" and taking care of him.
Because of my illness, I hadn't been around to spend much time with him in the past year, as he slid downhill in functioning due to advanced Parkinson's disease.
On Friday we heard that he was being admitted to the hospital, and that it looked as if his last days were upon us. I went to the hospital on Friday evening to see him. He was pretty out of it, but was taking apple juice and Sprite on a mouth sponge. The state has no provisions for a person with developmental disabilities to have any sort of additional care when they are in the hospital. Knowing first hand how much advocacy can be required when you're in the hospital, I felt bad that his main direct care staff and the agency director all looked wiped out and had been dealing all day with getting him admitted and making sure he'd be taken care of. Still, when you can't even speak to make your wishes known or to tell someone you are in pain, you just never know how the quality of care from the medical personnel will be. Most of them haven't had a whole lot of exposure to people with intellectual disabilities who can't push the button or tell you what they need.
I asked if I could be of help if I stayed overnight with him on Friday night, and his CLO staff took me up on it, knowing that I would look after him and would also call all of the appropriate people in the event that his status changed at all.
It ended up being wonderful opportunity to spend time with David. I brought a radio, my Cole Porter CD, some lavender lotion to rub on his head, back, and hands, and just had the opportunity to talk to him and tell him how much we all loved him and how many smiles he had brought to so many people over the years. I slept (for an hour or so) in a chair next to his bed, with my pillow next to his, and held his hand. I went back on Saturday night and did the same thing. There was no expectation of doing anything for him except to love him and remind the nurses when he seemed uncomfortable or in pain. During the day many people were stopping by to see him, to say goodbye, and to share memories with each other. The agency director here in Lawrence, Jamie, was the other main person who spent many hours there all weekend, she's been with CLO forever and loved David just like all of his staff loved him.
I went home on Saturday morning around 7:30 and went to sleep. The person who had relieved me, Jamie, called shortly after 10 to tell me it was time to come back to the hospital, and I called Scott. I arrived at the hospital at the same time as all of his staff and his guardian was arriving... everyone had been called. We gathered around David, shared memories and funny stories as David's breath grew more and more shallow. Around 12:30, David opened his eyes wide and looked out into the distance very intently, and then peacefully left us. I was holding his hand, another person was stroking his head and telling him goodbye, someone else was rubbing his feet, and another person was telling him it was okay to go and see his mom.
I felt incredibly priveleged to have had the opportunity at the last minute to spend that time with him, and to help make the last couple of days as comfortable as possible. We were all lucky to have known David, and to have worked with him throughout the years. He touched everyone he came into contact with in a positive way, and I like to believe that he led a good and happy life...and he was loved.
One of the guys, David, was a fussy old man (he always seemed older than he was). He was meticulous, and slow, and had a very routine way of doing absolutely everything. Once in a while, however, he'd pick up on a phrase or joke and repeat it, and it was always funnier coming from his mouth than from anyone else's. I wasn't always as patient as I should have been with David. I remember one night trying to coax him to hurry and get out of the van, as it was very cold. For years after that, he would repeat my exact words when told to hurry out of the van... "Hurry up, I'm freezing my ass off."
He was amazing at retaining bits of knowledge and being able to identify pieces of classical music and their composers, state capitols, state mottoes, state birds... He was born in 1934, but unlike so many folks born in that time period, he was not sent away to an institution. He lived at home with his mother until she grew too old to properly care for him, and therefore he had many advantages that people who spent significant amounts of time in institutions did not. He had good table manners, a particularly dapper way of dressing, an interest in reading the Kansas City Star (particularly the automotive section) and loved many types of music. He and I used to warble Cole Porter songs to each other as I helped him get ready for bed at night. He loved to go to concerts, plays, and out for meals. He loved visiting his mother in Tonganoxie, and remembered exactly who lived in what house from years before. He loved his roommates, and they took great pride in "helping him" and taking care of him.
Because of my illness, I hadn't been around to spend much time with him in the past year, as he slid downhill in functioning due to advanced Parkinson's disease.
On Friday we heard that he was being admitted to the hospital, and that it looked as if his last days were upon us. I went to the hospital on Friday evening to see him. He was pretty out of it, but was taking apple juice and Sprite on a mouth sponge. The state has no provisions for a person with developmental disabilities to have any sort of additional care when they are in the hospital. Knowing first hand how much advocacy can be required when you're in the hospital, I felt bad that his main direct care staff and the agency director all looked wiped out and had been dealing all day with getting him admitted and making sure he'd be taken care of. Still, when you can't even speak to make your wishes known or to tell someone you are in pain, you just never know how the quality of care from the medical personnel will be. Most of them haven't had a whole lot of exposure to people with intellectual disabilities who can't push the button or tell you what they need.
I asked if I could be of help if I stayed overnight with him on Friday night, and his CLO staff took me up on it, knowing that I would look after him and would also call all of the appropriate people in the event that his status changed at all.
It ended up being wonderful opportunity to spend time with David. I brought a radio, my Cole Porter CD, some lavender lotion to rub on his head, back, and hands, and just had the opportunity to talk to him and tell him how much we all loved him and how many smiles he had brought to so many people over the years. I slept (for an hour or so) in a chair next to his bed, with my pillow next to his, and held his hand. I went back on Saturday night and did the same thing. There was no expectation of doing anything for him except to love him and remind the nurses when he seemed uncomfortable or in pain. During the day many people were stopping by to see him, to say goodbye, and to share memories with each other. The agency director here in Lawrence, Jamie, was the other main person who spent many hours there all weekend, she's been with CLO forever and loved David just like all of his staff loved him.
I went home on Saturday morning around 7:30 and went to sleep. The person who had relieved me, Jamie, called shortly after 10 to tell me it was time to come back to the hospital, and I called Scott. I arrived at the hospital at the same time as all of his staff and his guardian was arriving... everyone had been called. We gathered around David, shared memories and funny stories as David's breath grew more and more shallow. Around 12:30, David opened his eyes wide and looked out into the distance very intently, and then peacefully left us. I was holding his hand, another person was stroking his head and telling him goodbye, someone else was rubbing his feet, and another person was telling him it was okay to go and see his mom.
I felt incredibly priveleged to have had the opportunity at the last minute to spend that time with him, and to help make the last couple of days as comfortable as possible. We were all lucky to have known David, and to have worked with him throughout the years. He touched everyone he came into contact with in a positive way, and I like to believe that he led a good and happy life...and he was loved.
Friday, August 04, 2006
Thursday, August 03, 2006
Mmmmm...Chronic mesonteric veinous thrombosis
Well, I am off the panic button for the moment. Looks like this veinous stuff just is what it is, although I had to chuckle when I looked at the diagram of different types of thrombosis at the above link, and it looked JUST LIKE the endoscopy I just had done. In other words, I have almost all of those types of thrombosis. Pancreatitis just plain sucks, man.
I read meditations every morning and night, and sometimes they are eerily right on. Today's morning meditation was about worry, and how unnecessary it is to worry too much, and that we aren't given anything we aren't strong enough to handle, etc. etc. blah biddy blah blah blah. How true, though, and after 5 days of obsessing about this and wondering how long I'll live and stuff, I realized that just because I've had this illness doesn't mean I get some special privilege of knowledge about the future...
I could get hit by a bus tomorrow, although seeing as how it is early August, it is much more likely that I'll be killed by some brand new incoming freshman driving the wrong way down Kentucky street. Yes, folks, I did it and I own it, and I was probably drunk at the time, too. Remember Country Club week? I fully blame that on my downward spiral into alcoholism. Really... it's probably not in my genes. It's because I was shy, and scared, on my own for the first time, and just stupid.
I got a lot better at drinking later on. I got to know cab drivers also, sometimes kissed them goodnight. Sometimes I kept my teeth in my mouth and wasn't a complete idiot. Ahhh. Memories.
Anyhoo, regarding my health... I'm thinking that instead of Mayo Clinic or St.Louis for the "Backup Plan in case I pop a vein and start bleeding internally" needs to be closer to me. Dr. S is going to check on whether or not KU Med does the TIPS procedure. That would be done by the interventional radiation department, and anyone who remembers them knows that they were such butts. They never put me out well enough, they were disrespectful, they hurt me, they were callous and unconcerned, and they played really bad music in the room where they were doing procedures. They never could get the dang liver drain shunt in the right place, and they nearly killed me 5 times trying. Still, they may end up being my plan B.
So, it is what it is, and I am feeling much more casual about the situation, if that makes any sense. I can't function at crisis level constantly anymore, it's just not a good way to live.
So... bring it on, and it'll all work out one way or another.
I read meditations every morning and night, and sometimes they are eerily right on. Today's morning meditation was about worry, and how unnecessary it is to worry too much, and that we aren't given anything we aren't strong enough to handle, etc. etc. blah biddy blah blah blah. How true, though, and after 5 days of obsessing about this and wondering how long I'll live and stuff, I realized that just because I've had this illness doesn't mean I get some special privilege of knowledge about the future...
I could get hit by a bus tomorrow, although seeing as how it is early August, it is much more likely that I'll be killed by some brand new incoming freshman driving the wrong way down Kentucky street. Yes, folks, I did it and I own it, and I was probably drunk at the time, too. Remember Country Club week? I fully blame that on my downward spiral into alcoholism. Really... it's probably not in my genes. It's because I was shy, and scared, on my own for the first time, and just stupid.
I got a lot better at drinking later on. I got to know cab drivers also, sometimes kissed them goodnight. Sometimes I kept my teeth in my mouth and wasn't a complete idiot. Ahhh. Memories.
Anyhoo, regarding my health... I'm thinking that instead of Mayo Clinic or St.Louis for the "Backup Plan in case I pop a vein and start bleeding internally" needs to be closer to me. Dr. S is going to check on whether or not KU Med does the TIPS procedure. That would be done by the interventional radiation department, and anyone who remembers them knows that they were such butts. They never put me out well enough, they were disrespectful, they hurt me, they were callous and unconcerned, and they played really bad music in the room where they were doing procedures. They never could get the dang liver drain shunt in the right place, and they nearly killed me 5 times trying. Still, they may end up being my plan B.
So, it is what it is, and I am feeling much more casual about the situation, if that makes any sense. I can't function at crisis level constantly anymore, it's just not a good way to live.
So... bring it on, and it'll all work out one way or another.
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