tag:blogger.com,1999:blog-19956453003354677472024-03-14T02:13:54.034-05:00The Wheel of FortunaSteve and Bobrobert had an amazing life. Let us tell you about it.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.comBlogger251125tag:blogger.com,1999:blog-1995645300335467747.post-46136092483092385962010-05-21T18:09:00.006-05:002017-04-18T11:51:46.604-05:00Goodnight, and Thank You!It's times like this that having an engineer's mind is a terrible thing. Just when I think the post-mortem review of my caregiver performance has finished, I start all over again. The good. The bad. The difficult choices. It always ends with a big dose of humility. BR wasn't mine to save. My job wasn't to keep him alive. It was to give him the best life I could. And as much as I wish I could have done both, it wasn't meant to be. <br /><br />So with that in mind, I'm saying goodbye to The Wheel of Fortuna. BR and I had an amazing life together. If what we shared here was of any use to you, well then the blog has served its purpose. I will be sticking around the MS blogging world to share in your joys and lend support when you are down. To those who have supported BR and me through this blog, you have my eternal gratitude.<br /><br /><div style="position:relative;height:0;padding-bottom:75.0%"><iframe src="https://www.youtube.com/embed/7-0lV5qs1Qw?ecver=2" width="480" height="360" frameborder="0" style="position:absolute;width:100%;height:100%;left:0" allowfullscreen></iframe></div>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com23tag:blogger.com,1999:blog-1995645300335467747.post-16614268450555261202010-05-14T11:03:00.003-05:002010-05-14T12:44:28.146-05:00Spike and Marleen at play<object width="660" height="405"><param name="movie" value="http://www.youtube.com/v/zUEh_-Q0Jfo&hl=en_US&fs=1&color1=0x006699&color2=0x54abd6&border=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/zUEh_-Q0Jfo&hl=en_US&fs=1&color1=0x006699&color2=0x54abd6&border=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="660" height="405"></embed></object><br /><a href="http://spikeandmarleen.blogspot.com/">Richie and Herrad's dogs</a> get some "Steve time."stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com5tag:blogger.com,1999:blog-1995645300335467747.post-77592441306254557992010-05-14T01:52:00.005-05:002010-05-14T12:42:51.221-05:00Amsterdam Postcards<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_QM04OVcnsrs/S-zz2rEM_kI/AAAAAAAAAeA/WPyyukvWufg/s1600/DSC01207.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/_QM04OVcnsrs/S-zz2rEM_kI/AAAAAAAAAeA/WPyyukvWufg/s400/DSC01207.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5471015767947148866" /></a><br />Amsterdam Centraal train station seen from hotel room<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zzyWUUcHI/AAAAAAAAAd4/OoOX83n1z9E/s1600/DSC01218.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zzyWUUcHI/AAAAAAAAAd4/OoOX83n1z9E/s400/DSC01218.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5471015693658124402" /></a><br /><a href="http://screamingrichie.blogspot.com/">Richie</a> in the kitchen<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zzx4BGEgI/AAAAAAAAAdw/In6oAkQhlBg/s1600/DSC01219.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zzx4BGEgI/AAAAAAAAAdw/In6oAkQhlBg/s400/DSC01219.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5471015685524427266" /></a><br /><a href="http://accessdenied-livingwithms.blogspot.com/">Herrad</a> out of bed!<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zzptCfDKI/AAAAAAAAAdo/koXTVV5oqC4/s1600/DSC01221.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zzptCfDKI/AAAAAAAAAdo/koXTVV5oqC4/s400/DSC01221.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5471015545138515106" /></a><br />Beautiful couple and Steve<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S-zzpP6k6QI/AAAAAAAAAdg/zrAPEHqcOSM/s1600/2010-05-13+21.42.59.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S-zzpP6k6QI/AAAAAAAAAdg/zrAPEHqcOSM/s400/2010-05-13+21.42.59.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5471015537320716546" /></a><br />Mmmm... Fritessaus<hr />stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com6tag:blogger.com,1999:blog-1995645300335467747.post-47463061978825024112010-05-14T01:41:00.009-05:002010-05-14T04:24:37.694-05:00Wisconsin and Illinois Postcards<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zxmx8CqUI/AAAAAAAAAdY/b_Tuqd30fxo/s1600/2010-05-07+17.17.32.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S-zxmx8CqUI/AAAAAAAAAdY/b_Tuqd30fxo/s400/2010-05-07+17.17.32.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5471013295890803010" /></a><br />Rain and construction made for extended hours on the road<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S-zxiQUHEmI/AAAAAAAAAdQ/xs2h7E10Wao/s1600/DSC01202.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S-zxiQUHEmI/AAAAAAAAAdQ/xs2h7E10Wao/s400/DSC01202.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5471013218145473122" /></a><br />Breakfast with KimmieG and Mike<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S-zxdSTj-6I/AAAAAAAAAdI/6tde0vTVtT4/s1600/DSC01204.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S-zxdSTj-6I/AAAAAAAAAdI/6tde0vTVtT4/s400/DSC01204.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5471013132780698530" /></a><br />In front of their Christmas Tree home<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_QM04OVcnsrs/S-zxXbiylzI/AAAAAAAAAdA/2SjUIpQRNoA/s1600/2010-05-08+23.35.30.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://2.bp.blogspot.com/_QM04OVcnsrs/S-zxXbiylzI/AAAAAAAAAdA/2SjUIpQRNoA/s400/2010-05-08+23.35.30.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5471013032181274418" /></a><br />Shut your ...<hr /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_QM04OVcnsrs/S-zxSmRNkxI/AAAAAAAAAc4/LAzD_ulQHA8/s1600/2010-05-10+16.23.23.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://2.bp.blogspot.com/_QM04OVcnsrs/S-zxSmRNkxI/AAAAAAAAAc4/LAzD_ulQHA8/s400/2010-05-10+16.23.23.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5471012949160989458" /></a><br />BBQ and commentary<hr />stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com1tag:blogger.com,1999:blog-1995645300335467747.post-61758499266435934962010-05-06T19:34:00.005-05:002010-05-06T23:19:20.425-05:00Riding the grief roller coasterIt started out with tears of joy. BR and I finally found a way to take away his pain that worked.<br /><br />The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.<br /><br />Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.<br /><br />And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.<br /><br />The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.<br /><br />Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.<br /><br />In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.<br /><br />From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.<br /><br />Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S-Nh3pf_k9I/AAAAAAAAAcA/FBkRJCsmRBA/s1600/DSC01198.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 400px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S-Nh3pf_k9I/AAAAAAAAAcA/FBkRJCsmRBA/s400/DSC01198.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5468321981218657234" /></a>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com19tag:blogger.com,1999:blog-1995645300335467747.post-956275904387442472010-05-05T15:17:00.010-05:002010-07-01T15:25:01.683-05:00Bobrobert's Memorial ServiceWhen I woke up the day after BR's death, I put iTunes on shuffle and hit play, figuring that if I didn't like the song, I could always skip it. The first song it played was Barry Manilow's <i>One Voice</i>. BR often told me how much he loved this song. I tried to sing along, but kept falling apart with tears. I promised myself I would find a way to work it into the memorial service.<br /><br />A few days later, I decided on two additional pre-recorded songs. The first was Sandi Patty singing <i>Upon This Rock</i>. One of BR's secret guilty pleasures was inspirational religious music, and Sandi Patty was one of his favorite artists.<br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/u_hSLLMamcQ&hl=en_US&fs=1&"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/u_hSLLMamcQ&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><blockquote><i>If in a simple carpenter<br />You see the Son of God<br />If you would choose to lose<br />When you could win<br />If you would give your life away<br />For nothing in return<br />Then you are where<br />My kingdom will begin.</i></blockquote>The second song was <i>To Me</i>, a duet by Lee Greenwood and Barbara Mandrell. I know, not the Barbra most of you were expecting. BR's friend Fran Kinman introduced him to this song long before I met him. While we were dating, it became clear that this was the kind of love he was looking for, and wasn't going to settle for less.<blockquote><i>To me<br />You are the hand that I reach for<br />When I've lost my way<br /><br />To me<br />You are the first star of evening<br />The sun that warms my day<br /><br />Just as sure as<br />I'm sure there's a Heaven<br />This was meant to be<br /><br />No road is too long<br />As long as you belong to me<br /><br />To me<br />You are the truth I've been living<br />Girl, I believe in you<br /><br />To me<br />You are the love I have looked for<br />My whole life through<br /><br />Just as sure as<br />I'm sure there's a Heaven<br />This was meant to be<br /><br />No road is too long<br />As long as you belong to me<br /><br />Just as sure as<br />I'm sure there's a Heaven<br />This was meant to be<br /><br />No road is too long<br />As long as you belong to me</i></blockquote>Reverend Emile was lined up to do the service and scripture readings, and Gail and Mary Katherine to play the prelude and postlude organ and piano. And as the day of the service neared, I realized that I needed to deliver BR's eulogy myself. But no matter how hard I tried, the things I wrote just didn't do justice to the life we shared together. I decided to focus on how he was always able to build and maintain a circle of friends no matter where he was, and on how much he loved those friends. With my sister Cindy by my side for support, I spoke of the dinner parties on Martel Avenue, the ex-boyfriends, and the neighbors -- many of whom were present in the Gilliam United Methodist Church that Saturday.<blockquote><i>If I had to pick a message to highlight from Bobrobert's life, it would be to hold the ones you love close and tight, and to never stop looking for people to love.</i></blockquote>The service closed with <i>One Voice</i>. I sang the first verse solo.<blockquote><i>Just one voice, singing in the darkness<br />All it takes is one voice<br />Singing so they hear what's on your mind<br />And when you look around you'll find</i></blockquote>My family joined me for the second verse and bridge.<blockquote><i>There's more than one voice<br />Singing in the darkness<br />Joining with your one voice<br />Each and every note another octave<br />Hands are joined and fears unlocked<br /><br />If only one voice would start it on its own<br />We need just one voice, facing the unknown<br />And then that one voice would never be alone<br />It takes that one voice</i></blockquote>Then we moved out into the congregation, hugging anyone who would have it. Standing in the aisles, we finished the song.<blockquote><i>It takes that one voice<br />Just one voice, singing in the darkness<br />All it takes is one voice<br />Shout it out and let it ring<br />Just one voice, it takes that one voice<br />And everyone will sing</i></blockquote><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/FKPWzLgvgW4&hl=en_US&fs=1&"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/FKPWzLgvgW4&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com9tag:blogger.com,1999:blog-1995645300335467747.post-90454996285419114412010-05-02T11:11:00.004-05:002010-05-02T11:19:47.035-05:00Celebrating BobrobertI'll be writing more about the wonderful memorial service and celebration when I return to Austin. But this was just too good not to share right away.<br /><br /><object width="660" height="525"><param name="movie" value="http://www.youtube.com/v/v_seEypTFkQ&hl=en_US&fs=1&color1=0x006699&color2=0x54abd6&border=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/v_seEypTFkQ&hl=en_US&fs=1&color1=0x006699&color2=0x54abd6&border=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="660" height="525"></embed></object><br /><br />Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com10tag:blogger.com,1999:blog-1995645300335467747.post-11146390771414039732010-04-30T09:12:00.005-05:002010-04-30T09:31:48.588-05:00Belcher Postcards<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S9roILRzxyI/AAAAAAAAAb4/wjAYd_YSUK0/s1600/DSC01173.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S9roILRzxyI/AAAAAAAAAb4/wjAYd_YSUK0/s400/DSC01173.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465936324931602210" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S9roHp1wT5I/AAAAAAAAAbw/nEeCo9iijfI/s1600/DSC01178.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S9roHp1wT5I/AAAAAAAAAbw/nEeCo9iijfI/s400/DSC01178.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465936315955564434" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_QM04OVcnsrs/S9rmNQqfVKI/AAAAAAAAAbo/Wk2xdPIUfek/s1600/DSC01182.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/_QM04OVcnsrs/S9rmNQqfVKI/AAAAAAAAAbo/Wk2xdPIUfek/s400/DSC01182.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465934213253387426" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S9rmM35oOvI/AAAAAAAAAbg/SdkBwMdGwSU/s1600/DSC01187.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S9rmM35oOvI/AAAAAAAAAbg/SdkBwMdGwSU/s400/DSC01187.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465934206605998834" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S9rmMSDu65I/AAAAAAAAAbY/55Os-wcqZpQ/s1600/DSC01190.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S9rmMSDu65I/AAAAAAAAAbY/55Os-wcqZpQ/s400/DSC01190.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465934196447832978" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S9rmL08Us5I/AAAAAAAAAbQ/qw82n2BVVsw/s1600/DSC01192.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S9rmL08Us5I/AAAAAAAAAbQ/qw82n2BVVsw/s400/DSC01192.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465934188632126354" /></a><br /><br />These last two photos are of Dede's place of work. She is nicknamed the "Dumpster Diva" for her ability to rescue discarded items and beautify her surroundings.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com9tag:blogger.com,1999:blog-1995645300335467747.post-46315476473337014312010-04-28T00:45:00.003-05:002010-04-28T00:51:06.049-05:00Self portrait postcardsBR took these photos of himself on my birthday. I found them in his iPhone.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_QM04OVcnsrs/S9fL3R9qwjI/AAAAAAAAAbI/CMipM8OQTOo/s1600/IMG_1696.JPG"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://1.bp.blogspot.com/_QM04OVcnsrs/S9fL3R9qwjI/AAAAAAAAAbI/CMipM8OQTOo/s400/IMG_1696.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465060823412687410" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_QM04OVcnsrs/S9fL3CAPF_I/AAAAAAAAAbA/2VEP8khzhqw/s1600/IMG_1697.JPG"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://1.bp.blogspot.com/_QM04OVcnsrs/S9fL3CAPF_I/AAAAAAAAAbA/2VEP8khzhqw/s400/IMG_1697.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465060819128489970" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S9fL2g9IrWI/AAAAAAAAAa4/26agHQJ4kuM/s1600/IMG_1698.JPG"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S9fL2g9IrWI/AAAAAAAAAa4/26agHQJ4kuM/s400/IMG_1698.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465060810257116514" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S9fL2AMxwhI/AAAAAAAAAaw/pejxrzuvNBI/s1600/IMG_1699.JPG"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S9fL2AMxwhI/AAAAAAAAAaw/pejxrzuvNBI/s400/IMG_1699.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5465060801464353298" /></a>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com15tag:blogger.com,1999:blog-1995645300335467747.post-18461955213777202602010-04-27T15:04:00.005-05:002010-04-27T23:51:49.449-05:00BR's brother preaches about loveIn this sermon, BR's older brother John talks about how important love is, and how he wishes he had been able to more fully open up his life and his heart to his brother.<br /><br />John - Bobrobert was so incredibly proud of you and all you have accomplished. And although he sometimes said you were being "made for TV," he never once doubted that you loved him with all of your heart. <br /><br /><object width="400" height="300"><param name="allowfullscreen" value="true" /><param name="allowscriptaccess" value="always" /><param name="movie" value="http://vimeo.com/moogaloop.swf?clip_id=11137116&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1" /><embed src="http://vimeo.com/moogaloop.swf?clip_id=11137116&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1" type="application/x-shockwave-flash" allowfullscreen="true" allowscriptaccess="always" width="400" height="300"></embed></object><p><a href="http://vimeo.com/11137116">Sanctuary | Apr 18 | 11:00</a> from <a href="http://vimeo.com/whiteschapelumc">White's Chapel UMC</a> on <a href="http://vimeo.com">Vimeo</a>.</p>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com1tag:blogger.com,1999:blog-1995645300335467747.post-66453790767618054712010-04-27T08:31:00.004-05:002010-04-27T09:23:48.461-05:00I get by with a little help from my friendsI wasn't there.<br /><br />I had come home to shower and meet the housekeeper, and was getting ready to walk out the door when Chad and David came in and told me that BR had passed. I think he didn't want me to see it happen.<br /><br />They drove Jordan and me back to Christopher House, where I was able to say my final goodbye to the body that loved, protected, and supported me for so many years. In his final moments, he was surrounded by people he loved, and I will be forever grateful to them for that. We packed up our stuff, and with one final sniff, we left it behind.<br /><br />There is no way to fully describe how my friends and neighbors came together to give BR a transit night like no other. The days that followed have been full of laughter, tears, memories, food, and OCG (obsessive-compulsive gardening).<br /><br />Today, the arrival of my sister Terri and her daughter Hope will mark the beginning of the run up to the memorial service on Saturday. I've started to pick out the music. Beth and Dede are coordinating the celebration that will follow. People who loved BR will be traveling from far and wide to Belcher to share their grief and memories.<br /><br />It's the sharing of BR stories that is sustaining me right now. Most I've heard. Some are brand new to me. He's touched so many lives.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com10tag:blogger.com,1999:blog-1995645300335467747.post-60661412950096366772010-04-25T10:55:00.001-05:002010-04-25T10:57:15.950-05:00Sharon grievesSharon is proof that we all grieve in our own way.<br /><br /><object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/_7taJRxHb7I&hl=en_US&fs=1&rel=0&color1=0x006699&color2=0x54abd6"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/_7taJRxHb7I&hl=en_US&fs=1&rel=0&color1=0x006699&color2=0x54abd6" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com10tag:blogger.com,1999:blog-1995645300335467747.post-71011964208839873692010-04-24T15:24:00.005-05:002010-04-24T18:21:01.807-05:00Bobrobert's ObituaryThis will run on Friday in Dallas, Shreveport, Baton Rouge, San Francisco, and Austin.<br /><br /><blockquote><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_QM04OVcnsrs/S9NTtMDz8lI/AAAAAAAAAao/xitlIrcfK6w/s1600/IMG_0382_2.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 400px;" src="http://1.bp.blogspot.com/_QM04OVcnsrs/S9NTtMDz8lI/AAAAAAAAAao/xitlIrcfK6w/s400/IMG_0382_2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5463802808726975058" /></a><br />Robert Ray McKellar passed away on Friday, April 23rd, 2010 at Christopher House in Austin, Texas from complications due to multiple sclerosis. He was 49 years old. A memorial service will be held at the Gilliam United Methodist Church, in Gilliam LA on Saturday, May 1st, 2010 at 2 PM. Officiating will be Reverend Emile Rousseau. A celebration of his life will follow at the home of Beth and Mickey McDade in Belcher LA.<br /><br />Born on December 27th, 1960 in Shreveport, Louisiana to Diana Meares McKellar and Benny Ray McKellar, Bobrobert was raised in an extended family so full of love, it's frightening. An artist and educator by trade, he was also looked to as a trusted friend and counselor by those who were blessed to know him.<br /><br />On October 10th, 1992, Steven Landherr joined Bobrobert in climbing a waterfall in the Appalachian Mountains, where they exchanged vows of eternal love and commitment between themselves and God. Their love for one another was ridiculously strong, weathering the unfathomable stresses and pain of MS as it quickly stole many of his abilities and eventually his life. During their time together, they lived in Dallas TX, Baton Rouge LA, San Francisco CA, and Austin TX.<br /><br />Bobrobert is preceded in death by his father Benny McKellar, his maternal grandparents Doris Pearce and John J. Meares, and his paternal grandparents Leveda and Lyman McKellar. He is survived by his husband Steven Landherr of Austin TX, his mother Diana McKellar of Belcher LA, his brother John McKellar and wife Debra of Keller TX, his nephew Jay McKellar of Little Elm TX, his niece Chandler McKellar of Keller TX, his aunt and uncle Beth and Mickey McDade of Belcher LA, his cousins William McDade and wife Kelly of Belcher LA, Paige McDade and husband Frank Hendrick of Belcher LA, and Eric McDade and wife Hillary of Shreveport LA.<br /><br />Memorials may be made to Equality Texas at <a href="http://tinyurl.com/eqtexasbr">http://tinyurl.com/eqtexasbr</a>, or The McDade House, 1825 Warrington Place, Shreveport, LA 71101.</blockquote>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com35tag:blogger.com,1999:blog-1995645300335467747.post-68758836754217292302010-04-23T15:16:00.002-05:002010-04-23T16:06:06.261-05:00He's gone<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_QM04OVcnsrs/S9ILspVRb6I/AAAAAAAAAag/ERms-aJaQwI/s1600/SanFran1.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 400px;" src="http://4.bp.blogspot.com/_QM04OVcnsrs/S9ILspVRb6I/AAAAAAAAAag/ERms-aJaQwI/s400/SanFran1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5463442159591059362" /></a>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com40tag:blogger.com,1999:blog-1995645300335467747.post-63035480099989735632010-04-22T21:02:00.004-05:002010-04-22T22:31:42.425-05:00The next phaseBR just got a beautiful batik scarf from <a href="http://batikonsilk.blogspot.com/">Gina</a> in some of the new colors she is using. Makes a lovely IV pole drape!<br /><br /><p class="mobile-photo"><a href="http://2.bp.blogspot.com/_QM04OVcnsrs/S9D_xMWzL8I/AAAAAAAAAaY/-8fX3cI7IEw/s1600/photo-764304.jpg"><img src="http://2.bp.blogspot.com/_QM04OVcnsrs/S9D_xMWzL8I/AAAAAAAAAaY/-8fX3cI7IEw/s400/photo-764304.jpg" alt="" id="BLOGGER_PHOTO_ID_5463147568595939266" border="0" /></a></p><br /><br />I didn't get much sleep last night. BR was very restless, but it was a different kind of restless. I could tell he wasn't in pain. The doctor told us this morning that she is pretty sure he is experiencing "terminal delirium" during which he gets restless, has conversations with people who aren't there, and can even try to get out of bed. So we have moved on from treating his pain, to treating the physiological issues that cause the dying brain to be restless. He will continue to receive his pain medications, but they won't be adjusted going forward.<br /><br />I asked the doctor if we should be encouraging him to "let go and pass on." She said that at this point, he is probably hearing what we are saying, recognizing the voices, but not necessarily catching the intended meaning. She recommended that we tell him we wish he wasn't going, but it is OK that he does. She also recommended giving specifics about how we are going to continue on once he is gone. Not just that I will continue my relationship and care for his mother, but that I will call her regularly and still celebrate holidays with her. Basically, we should put ourselves in his helpless position and imagine the things we would want to hear.<br /><br />He has received a lot of voice messages from friends that I play for him each evening. With each voice that he hears, he seems to recognize the person speaking and to enjoy what they say. I feel the same way about the comments left here. Thank you!stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com13tag:blogger.com,1999:blog-1995645300335467747.post-29486434810565701232010-04-22T00:28:00.003-05:002010-04-22T00:53:05.382-05:00The business of dyingSorry I'm not much for words right now.<br /><br />Tuesday, BR had a bit of a rally, charming his guests during his moments of clarity.<br /><br />Wednesday has seen him sink deeper into the illness. I can count the number of true interactions with him on one hand, and they were no more than a single back and forth. His heart rate is hovering around an unsustainable 120 bpm.<br /><br />I made a list of the number of accounts and possessions that are in BR's name -- there are only 4. I deposited his stock certificate into his brokerage account, and hope I can liquidate it soon. Then I will be able to close it, his bank account, and his credit card. His mother will be given the meager proceeds, as we had planned.<br /><br />I also spoke with the hospice social worker, who put me in touch with a nearby funeral home that will handle the cremation. After discussion with his mother and aunt, we have decided to buy a magnolia tree, and plant it on their property in Louisiana, using his ashes as fertilizer. That way he will always be close to his family, and his story can be passed down to future generations.<br /><br />His aunt also generously offered to host a memorial party at her home in Belcher, and I have accepted. I want to make it one they will talk about for decades to come. Tastefully, of course. :-)stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com16tag:blogger.com,1999:blog-1995645300335467747.post-55786778469856676272010-04-20T07:58:00.005-05:002010-04-20T10:08:40.829-05:00Calmer nights, busier days"Turn that off. I don't think I can handle this and Barbra Streisand." BR's mother, Dede had arrived with tears in her eyes, followed by her sister, Beth.<br /><br />BR has slept peacefully now for two nights in a row. At the first sign of restlessness, I have been calling the nurse for breakthrough pain medication, but I've only had to call once at night. I'm very happy with the progress keeping his pain down.<br /><br />We are now in full visitor mode here at Christopher House. In addition to Dede and Beth, our neighbors Cindy, Damaris, and Suzy have made and delivered dinners. BR's brother John, niece Chandler, and John's associate pastor Todd drove down from Keller for the day. Scot, Cathy, and Sharon are here from Dallas. Chad and David have flown in from Colorado, and Jay from Miami. Their presence is a great comfort. There's nothing like laughing with family and friends to take the edge off.<br /><br />BR was awake, but not totally alert for most of the day yesterday. Most of what he says is unintelligible, and we treasure the moments when he is able to clearly express his feelings. For example, when I told him Jay was coming, he let out a long "oooh, Lord!"<br /><br />Yesterday morning, it looked as if BR was down to his last hours. His heart was racing. His blood pressure was very low. His hands, feet, knees and elbows were purple and splotchy. After a full day of company, his vitals stabilized. I'm guessing that he refuses to be left out of a good party.<br /><br />The doctors added IV Ketamine to BR's pain med cocktail. Yes, Bob Duff -- BR is now mainlining Special K. And it seems to be working. There was no restlessness at all last night, and he woke up this morning asking for "happy coffee." Nevermind that he doesn't drink coffee. I'm trying hard not to get my hopes up, and instead I am just living in the present and letting the future take care of itself.<br /><br />I need to wrap this up, but not before thanking <a href="http://accessdenied-livingwithms.blogspot.com/">Herrad</a>, <a href="http://screamingrichie.blogspot.com/">Richie</a>, <a href="http://disablednotdead-anne3.blogspot.com/">Anne</a>, <a href="http://bipolarsoupkitchen-stephany.blogspot.com/">Stephany</a>, and <a href="http://caregivinglyyours.blogspot.com/">Patrick</a>, for rallying the MS blogging world to our support. It's a strange and marvelous community, and I'm glad to be a part of it.<br /><br />And finally, I've set up an online gallery for people to share their favorite photos of BR. If you have some to share, just go to <a href="http://gallery.me.com/bobrobertmckellar/100173">http://gallery.me.com/bobrobertmckellar/100173</a>, and click the "Upload" button in the toolbar.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com22tag:blogger.com,1999:blog-1995645300335467747.post-89671229760140414712010-04-19T00:44:00.003-05:002010-04-19T00:54:58.735-05:00Trying to find comfortWhat a difference a year makes. Last year, friends joined BR and me in cheering in the MS150 riders. This year, we had to cross the line of riders to bring BR to Christopher House.<p class="mobile-photo"><a href="http://4.bp.blogspot.com/_QM04OVcnsrs/S8vt7AlS-HI/AAAAAAAAAaQ/OGt5e3oB42k/s1600/photo-716072.jpg"><img src="http://4.bp.blogspot.com/_QM04OVcnsrs/S8vt7AlS-HI/AAAAAAAAAaQ/OGt5e3oB42k/s400/photo-716072.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5461720571141355634" /></a></p><br />As we start our third night of what the hospice nurses call his body "actively dying," I'm trying to find comfort in the outpouring of support from our friends. Comfort in having Dede and Beth and Jordan by our side. Comfort in the many glimpses of memories that flash across his iPad screen. But for some reason, all they do is make me cry. Not a very comfortable emotional state.<br /><br />Comfort is found in the ordinary. This is anything but. So I've put the <I>Hello, Dolly</I> DVD into the laptop, and I'm singing along -- just like BR and I have done with friends so many times before.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com35tag:blogger.com,1999:blog-1995645300335467747.post-62875753026416824702010-04-18T13:03:00.002-05:002010-04-18T13:29:50.604-05:00Another rough nightBR didn't sleep well at all last night. In addition to moaning and yelling, he started forming sentences. "Honey, please help me" was repeated for six hours straight. Unfortunately, this was a monologue, and I couldn't get him to give me any instructions on what needed fixing. So I continued with the Ativan until morning.<p>Then around 9am, I asked him how he was doing, and he responded, "my legs and feet are killing me." I pushed my luck and offered him some water through a straw, which he eagerly drank. Not knowing how long this swallowing opportunity would remain, I quickly gave him his oral meds hoping they would reduce his leg pain. Before long, he was finally sleeping.<p>I called the hospice nurse to ask for more help keeping him comfortable. He called the doctor and they recommended checking BR into Christopher House for in-patient pain management. BR is now comfortable in a private room -- one that has that has Willie Nelson as its generous benefactor.<p class="mobile-photo"><a href="http://4.bp.blogspot.com/_QM04OVcnsrs/S8tNcEY6AbI/AAAAAAAAAaI/Lt1lzQuZHqs/s1600/2010-04-18+12.56.35-732086.jpg"><img src="http://4.bp.blogspot.com/_QM04OVcnsrs/S8tNcEY6AbI/AAAAAAAAAaI/Lt1lzQuZHqs/s400/2010-04-18+12.56.35-732086.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5461544117726740914" /></a></p>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com10tag:blogger.com,1999:blog-1995645300335467747.post-21545555766871142312010-04-17T19:51:00.003-05:002010-04-17T20:22:14.343-05:00Soul crushingly painful decisionsSitting alone in my living room, listening to a spring thunderstorm. BR has always loved thunderstorms. It has been raining most of the past few days. I'm not the only one crying.<br /><br />The combination of Ativan and Methadone has BR resting comfortably once again. In consultation with his mother and brother, I have decided to discontinue the antibiotics. This beautiful, charming, light soul doesn't deserve to be weighed down any longer by a body that has betrayed him. It's so hard to take myself out of a decision like this. But when I do, I know that he has been looking for an escape from his body for a while now, and I can't deny him this chance.<br /><br />Benny, come take your Bobrobert by the hand and show him where to get a good, stiff drink.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com16tag:blogger.com,1999:blog-1995645300335467747.post-70478149778168960312010-04-17T11:40:00.003-05:002010-04-17T11:54:58.673-05:00Rough nightBR hasn't regained consciousness since 8pm last night. He was moaning and yelling off and on most of the night, but since I couldn't get him to swallow anything, there wasn't much I could do. When the hospice nurse came out this morning, she told me to give him the methadone rectally, and to dissolve his Ativan in 1/2 cc of water, then use a medicine syringe to put it between his lower lip and gum. He's now resting comfortably again.<br /><br />The hospice doctor offered two options: admit him into a hospital for a full battery of tests and treatment, or keep him at home and comfortable. I chose the latter -- it's what he wants. We will continue with the IV antibiotics, and the next 24-48 hours will be make or break.<br /><br />Light a candle and say a prayer for him, please.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com5tag:blogger.com,1999:blog-1995645300335467747.post-73722774979316586422010-04-16T18:11:00.003-05:002010-04-16T20:23:20.283-05:00His worst painBR is hurting something awful today. When the hospice nurse came out this morning to check on him, he was running a low grade fever and sweating profusely. Despite drinking quite a bit of water, he's not putting out much urine, and what's there is turning brown. Also, like two years ago when he had the abscess in his mouth, he is beginning to struggle to comprehend his surroundings, and he is repeating even the most simple of thoughts dozens of times.<br /><br />The urine culture taken earlier this week showed only the colonized bacteria, not anything growing out of control. His lungs are clear. His skin isn't yellow. So where on earth is this infection hiding? The doctor has decided to take the "big hammer" approach and start IV antibiotics this evening -- twice a day for 10 days. Since hospice is administering them, he will be allowed to remain at home. Nothing drives home the fact that BR is really sick like 20 IV balls in the fridge.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_QM04OVcnsrs/S8ju6umF4gI/AAAAAAAAAaA/jyJqETD6QJU/s1600/DSC01170.JPG"><img style="cursor:pointer; cursor:hand;width: 285px; height: 400px;" src="http://2.bp.blogspot.com/_QM04OVcnsrs/S8ju6umF4gI/AAAAAAAAAaA/jyJqETD6QJU/s400/DSC01170.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5460877240894349826" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_QM04OVcnsrs/S8ju6D_8moI/AAAAAAAAAZ4/CZB34mvl30I/s1600/DSC01163.JPG"><img style="cursor:pointer; cursor:hand;width: 286px; height: 400px;" src="http://3.bp.blogspot.com/_QM04OVcnsrs/S8ju6D_8moI/AAAAAAAAAZ4/CZB34mvl30I/s400/DSC01163.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5460877229460068994" /></a><br /><br />The PICC line nurse just left after an 80 minute procedure to insert the IV catheter. He also got a peripheral IV line, which will be used until an X-ray can confirm the catheter placement. She also taught me how to flush the catheter -- really pretty easy. The hospice nurse should be here any minute to draw blood and start the first antibiotic ball.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com4tag:blogger.com,1999:blog-1995645300335467747.post-85342239706829346442010-04-13T12:40:00.003-05:002010-04-13T13:48:07.202-05:00I'm desensitized to all but his worst pain."It really hurts when you put on my socks."<br /><br />"All the stops and starts in the car really hurt."<br /><br />"I've got to get out of this chair. I'm burning up."<br /><br />"I've got to get out of this bed. I'm burning up."<br /><br />These are some of BR's primary daily issues affecting his comfort. None of them are new. We've seen doctor after doctor. We've tried many changes in routine. Still, these complaints linger.<br /><br />Even remaining open-minded to suggestions from others on how to better manage his symptoms is a struggle. After so many failures, I've become numb. I do what's worked best to minimize his discomfort, and try not to beat myself up that the solutions aren't complete. I no longer believe a complete solution exists.<br /><br />BR isn't in the same place, and rightfully so. He's the one in pain. In his eyes, there is always something I could be doing differently to make him feel better. I feel like a defective life preserver around a person who is never going to be rescued.<br /><br />Despite my resignation on the daily discomforts, we are still fighting the occasional waves that overtop us. BR swallowed a crown a couple weeks ago, and is scheduled for a permanent replacement on the 19th. In the mean time, the temporary crown has fallen off twice. Thank goodness he hasn't swallowed it as well, and Jordan has been able to handle the multiple visits to the dentist.<br /><br />Then, as I had previously suspected, BR body temperature spiked over the weekend, hitting 102.7 before I called the weekend hospice nurse. We agreed that Percocet would both reduce the fever and relieve his skin pain, and after the first dose, his temperature came down. It has spiked back up a few times since then, and is responding well to pills. His case manager came by on Monday to check on him and collect a urine sample. Until we get the results, I'll keep him as comfortable as I can.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com2tag:blogger.com,1999:blog-1995645300335467747.post-8298704969726479072010-04-09T00:37:00.003-05:002010-04-09T10:03:06.119-05:00We now return you to your regularly scheduled blog ...When we last left you, BR had entered hospice in an effort to bring his pain levels down. The hospice doctors had taken him off Fentanyl and put him on Methadone, with a modest reduction in pain.<br /><br />Over the last two months, we have been gradually increasing the Methadone, but aren't seeing further benefits. I'm sure the next steps will include trying a different medication, and we've asked the doctors to start looking into alternatives.<br /><br />BR's skin sensitivity is really hurting him. This is usually a sign of an infection, but I'm at a loss as to where. He just finished a suite of Levaquin to clear a Cipro resistant UTI. After reading up on Levaquin, it seems an odd antibiotic choice given the potential negative affects it can have on BR's already compromised central nervous system.<br /><br />At the peak of the UTI, he was passing blood clots in his urine. Pretty frightening at first, but some online research shows it to be a fairly common occurrence among long term suprapubic catheter users. Once the UTI cleared, the clots stopped.<br /><br />So the increased skin sensitivity remains a mystery. I'm going to start monitoring his body temperature today. Without a secondary sign of infection, like a temperature or cloudy urine, we have to treat the sensitivity as yet another mysterious and disabling MS symptom.<br /><br />I feel bad saying this, but I've been feeling disappointed in hospice. I heard from so many people that they would swoop in and take care of everything, but that just hasn't been the case. BR's biggest needs are prescription maintenance and counseling. Before hospice, I was able to refill his non-triplicate prescriptions 24/7 at the local Walgreens. Hospice requires 24 hours notice, the refill requests must go through the case manager who isn't always available, and the pharmacy is only open M-F 8-5. Given how easy it is to predict when BR will run out of a refill, I asked the case manager to put a reminder in their computer to automatically order refills, but that request was denied. Given that hospice refills in 2 week increments, the burden on me has more than doubled.<br /><br />As for counseling, hospice provides chaplains. Now BR takes a while to warm up to a person before he opens up, and just as he was getting to that point, the chaplain fell ill. After three weeks of missed appointments, BR requested a replacement chaplain. I hope we get one soon.<br /><br />So that's where we stand. Trying to ignore the pain. Trying to keep pushing for what we need. Trying to savor the moments of joy.stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com8tag:blogger.com,1999:blog-1995645300335467747.post-39870057113029246632010-04-08T23:30:00.002-05:002012-10-08T22:32:07.239-05:002010 Birthday Guilty Pleasure FinaleAs the end of my birthday draws near, I have to admit that in the last 12 months, I've discovered the joy of Family Guy. I didn't think I would like it. But I did.<br /><br />There has to be a better way to end this polluted stream of infantile guilty pleasures than a fart joke, but I can't think of one.<br /><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/eNhTAW0UjwU" frameborder="0" allowfullscreen></iframe>stevehttp://www.blogger.com/profile/18134766859291227041noreply@blogger.com1