Thank you to everyone that came and everyone that will be getting their packets today via Rebekah or Dilly. It was an emotional meeting, but very productive as well. I thoroughly enjoyed seeing everyone and am looking forward to seeing folks outside of that room again.
We're working on getting the care calendar out to everyone and expect that it will be released within the week. This will allow everyone to see what need the family has and then they can volunteer whatever they'd like to do. The captains will be your points of contact.
Captains are as follows:
Dilly Lewis - Captain of evening care givers (i.e. Ami's sitter)
Jennie McDivitt - Food coordinator
Holly Ford - Captain
Carol DeBoe - Captain (Austin)
Dena Stauffer - Captain (PA)
Kelly Fears is the team coordinator. She ultimately makes sure we have the coverage that we need, creates the calendar and keeps the captains in the loop.
Again, thanks to everyone that came. As you know, it was emotionally very difficult for me to have to ask for people's help, and share how I feel about becoming a burden to my family and friends. Since my diagnosis, I've realized how my hope in humanity has always been high and that nobody has let me down yet. No matter how bad this disease sucks, I have been seeing so many positives. Relationships growing stronger; healing for other families effected by the disease; and finally, learning that everyone can get something positive out of being a part of our lives.
Monday, January 14, 2008
Friday, January 11, 2008
Friday, January 11, 2007
We've been getting ready for our Share the Care meeting this Saturday 2:00 at Collierville United Methodist Church in the dining room. Everyone is welcome to come.
We've been doing great. I've been feeling fantastic and getting around well. I've fallen 3 times. Not hard falls, more like a whithering. My body just won't support me. So I've taken to using the wheelchair and pedal around Fred Flintstone style. So far, I haven't had a wreck or put any holes in the walls, so I call that pretty skilled pedaling! I had to have a MRV (determines the blood flow through the arteries of the brain) and found out that I do indeed have a brain and that it's working fine...giggle...as fine as my mind can be. Turns out that they ran the wrong test, so I have to go back next Tuesday and get the correct test done. Of course, I asked if that means I won't be charged for the first one....harrrrrrr harrrr
Chase made the honor roll and is being recognized Monday at school. We're quite proud of our little feller! He's made a new friend at school. Ms. Holly Ford. She helped us with the Walk fundraiser at the school and we've gotten to know her since. Her father had ALS, which is a bond between her and Chase. She's a phenomenal woman and has amazed us in her spirit and willingness to help our family. Chase also won 3rd place on his speech. He is going to the county competition.
Deke is walking and looks so precious doing it! He loves to clean. He pushes his dirt devil vacuum around, sweeps and swifters. He loves to just push me out of the way. The other day I wheeled into the pantry and he shut the door behind me! It's too narrow for me to back up and sits under the stairs, so the ceiling is slanted, which meant I couldn't stand up and wouldn't ya know, the light was burned out. Lucky for me, Chase was upstairs and heard me hollering. That little menace!
We're on the look out for a used handicap van. My power chair should be here within a few weeks and we'll need to be able to load me up into it. I'm actually looking forward to the power chair because it'll give me more mobility.
Funny story. Shirley and I went to Costco yesterday and I used one of their power scooters. I was backing out of the bathroom and ran into the garbage can and then went forward and bounced off the wall. It was actually kinda like bumper cars.....snort. That's only the second time I've used one of those. The first time was at Wal-Mart and that was a disaster. The rows are just too narrow. I ran into everything and everybody! Darrin acted like he didn't know me..........chuckle...snort.
I'm working on recording my voice so that I can use it later when I can't speak and communication will be electronic. I'd rather it be my voice, than a computer animated one. It's really pretty nifty, but irritating because you have to say phrases at a certain pitch, annunciation and loudness. It doesn't detect attitude either, when I have to repeat it 500 hundred times.
I'll update after the meeting.
Enjoy your weekend!
We've been doing great. I've been feeling fantastic and getting around well. I've fallen 3 times. Not hard falls, more like a whithering. My body just won't support me. So I've taken to using the wheelchair and pedal around Fred Flintstone style. So far, I haven't had a wreck or put any holes in the walls, so I call that pretty skilled pedaling! I had to have a MRV (determines the blood flow through the arteries of the brain) and found out that I do indeed have a brain and that it's working fine...giggle...as fine as my mind can be. Turns out that they ran the wrong test, so I have to go back next Tuesday and get the correct test done. Of course, I asked if that means I won't be charged for the first one....harrrrrrr harrrr
Chase made the honor roll and is being recognized Monday at school. We're quite proud of our little feller! He's made a new friend at school. Ms. Holly Ford. She helped us with the Walk fundraiser at the school and we've gotten to know her since. Her father had ALS, which is a bond between her and Chase. She's a phenomenal woman and has amazed us in her spirit and willingness to help our family. Chase also won 3rd place on his speech. He is going to the county competition.
Deke is walking and looks so precious doing it! He loves to clean. He pushes his dirt devil vacuum around, sweeps and swifters. He loves to just push me out of the way. The other day I wheeled into the pantry and he shut the door behind me! It's too narrow for me to back up and sits under the stairs, so the ceiling is slanted, which meant I couldn't stand up and wouldn't ya know, the light was burned out. Lucky for me, Chase was upstairs and heard me hollering. That little menace!
We're on the look out for a used handicap van. My power chair should be here within a few weeks and we'll need to be able to load me up into it. I'm actually looking forward to the power chair because it'll give me more mobility.
Funny story. Shirley and I went to Costco yesterday and I used one of their power scooters. I was backing out of the bathroom and ran into the garbage can and then went forward and bounced off the wall. It was actually kinda like bumper cars.....snort. That's only the second time I've used one of those. The first time was at Wal-Mart and that was a disaster. The rows are just too narrow. I ran into everything and everybody! Darrin acted like he didn't know me..........chuckle...snort.
I'm working on recording my voice so that I can use it later when I can't speak and communication will be electronic. I'd rather it be my voice, than a computer animated one. It's really pretty nifty, but irritating because you have to say phrases at a certain pitch, annunciation and loudness. It doesn't detect attitude either, when I have to repeat it 500 hundred times.
I'll update after the meeting.
Enjoy your weekend!
Thursday, January 3, 2008
Share the Care starting soon
We'll be contacting friends, family, co-workers and church members soon in regards to setting up a Share the Care group for me. This group's purpose is to help relieve my caregivers, fill in the gaps when help is needed, and/or provide a skill that you're particularly good at, etc. I'll be calling folks individually and inviting you to come to the meeting so that you can determine if this is something you would like to be a part of. Your participation is, of course, voluntary and the time commitment is at your discretion.
We hope that you'll be a part our group. Your help will always be appreciated. More info about the concept can be found at www.sharethecare.org.
We hope that you'll be a part our group. Your help will always be appreciated. More info about the concept can be found at www.sharethecare.org.
Happy New Years 2008!
We hope everyone ate their black-eye peas, pork & sauerkraut, or whatever your traditional good luck food is. We all took a bite of a hot dog on the way back from the Little Rock airport. Hopefully that covered us until we could eat a Yoder Meat's pork loin today, which was fantabulous!!!!
We spent the New Year in Austin with my parents and sister. It was wonderful seeing the canyons in Austin and soaking up the flavor of Texas. Although we stayed close to home and spent most of the time visiting, we did manage to get in a trip to Salt Lick BBQ, which was a beautiful drive up into the canyons. It is a real rustic place were they smoke the meats in front of you and have chicken only in "season", i.e. if it's been cooked or not. We found this hysterical, or at least I did. What season isn't chicken in ?
You can never not do a little shopping and there was a new outdoor outlet mall near Mom's, so we headed over there and picked up new shoes for me and the kids. I used the Clark's gift certificate Darrin gave me for x-mas. We put Deke's new Nike's on him and you would have thought he had on gravity boots. I'm still laughing!
New Year's day us kids took off for the movies while Mom and Lewis watched Deke. We saw The Legend. It was a good movie, but I have to say the ending was lame. That night Missie and Travis took Chase out to shoot off fireworks. No one was hurt, no fires started and the future pyro of America had his fix. Lewis, Mom, Darrin, Deke and I shot off a few firecrackers in the drive. We didn't want to do too many because we were in the city. Of course, the quote from the night was from my mom to Lewis, "The gasoline wasn't necessary." Darrin shot off one firework and it fell to the side and started exploding around us. We took off for the house before anyone called the Po Po on us.
Although the travel was harder than I realized (wheelchair, stroller, baby, diaper bag, carry on, purse and the 3 of us), we made it! Home never felt so good.
It was a trip I'll cherish. I enjoyed every moment with my mummy.
We spent the New Year in Austin with my parents and sister. It was wonderful seeing the canyons in Austin and soaking up the flavor of Texas. Although we stayed close to home and spent most of the time visiting, we did manage to get in a trip to Salt Lick BBQ, which was a beautiful drive up into the canyons. It is a real rustic place were they smoke the meats in front of you and have chicken only in "season", i.e. if it's been cooked or not. We found this hysterical, or at least I did. What season isn't chicken in ?
You can never not do a little shopping and there was a new outdoor outlet mall near Mom's, so we headed over there and picked up new shoes for me and the kids. I used the Clark's gift certificate Darrin gave me for x-mas. We put Deke's new Nike's on him and you would have thought he had on gravity boots. I'm still laughing!
New Year's day us kids took off for the movies while Mom and Lewis watched Deke. We saw The Legend. It was a good movie, but I have to say the ending was lame. That night Missie and Travis took Chase out to shoot off fireworks. No one was hurt, no fires started and the future pyro of America had his fix. Lewis, Mom, Darrin, Deke and I shot off a few firecrackers in the drive. We didn't want to do too many because we were in the city. Of course, the quote from the night was from my mom to Lewis, "The gasoline wasn't necessary." Darrin shot off one firework and it fell to the side and started exploding around us. We took off for the house before anyone called the Po Po on us.
Although the travel was harder than I realized (wheelchair, stroller, baby, diaper bag, carry on, purse and the 3 of us), we made it! Home never felt so good.
It was a trip I'll cherish. I enjoyed every moment with my mummy.
Saturday, December 22, 2007
Thank you to all my friends at the Navy!
You guys are awesome! Don't think you were fooling me by sending us a box of cookies and a pkg of Oreo's. Although they are yummy, and Darrin (and Chase) are loving 'em. Not that I haven't eaten any either.
We have company in this weekend, Big Ken, a friend of Darrin's from Kansas. Yes. He's tall! 6' 7". We of the little people world are in great awe of such a strapping fella! We have put the meat and cheese tray you guys sent to good use.
If you are worried about sending too much food, don't! We've enjoyed it and it's quickly dwindling.
I'm very fortunate to have worked with all of you and it's times like this when I realize how lucky I am. Darrin keeps reminding me to let people help and know what's going on, that everyone wants to help and that by letting them give, it gives back to them. I'm going to do my best to let this happen.
And yes, I'm bawling. Well, crying at least.
Thank You!
Merry Christmas and Happy New Year!
We have company in this weekend, Big Ken, a friend of Darrin's from Kansas. Yes. He's tall! 6' 7". We of the little people world are in great awe of such a strapping fella! We have put the meat and cheese tray you guys sent to good use.
If you are worried about sending too much food, don't! We've enjoyed it and it's quickly dwindling.
I'm very fortunate to have worked with all of you and it's times like this when I realize how lucky I am. Darrin keeps reminding me to let people help and know what's going on, that everyone wants to help and that by letting them give, it gives back to them. I'm going to do my best to let this happen.
And yes, I'm bawling. Well, crying at least.
Thank You!
Merry Christmas and Happy New Year!
Dec 22, 2007 MRI results and Dr visit
We went to see the Dr. at his methodist office, not the clinic, which was nice in that we didn't have to wait til next week to see him, but frustrating at the same time because the doctor that wanted us to come is was the "protege" and not Bertorini. Of course, I was worried because he wanted me to come in to talk about the MRI results and was now going to tell me something else was wrong. Fortunately, he just didn't understand what was going on. Unluckily for him I was ready and conscious (unmedicated) enough to talk to him. Matter of fact, Darrin had asked me was he going to be the good guy, or the bad guy? I took the bad guy. I was still polite but had a list to get through and wanted to make sure that the 5 staff; 2 nurses; 2 doctors and 1 receptionist all agree to the call in protocol that we have to go through. I wanted the "protege" to understand that he quadrupled the Rilutek and that I knew it. This is what I believe led to the headaches, crazy blood pressure and 2 hospital visits!!!!
Any hoo....the results of the MRI are good, in that they found nothing wrong...no where, that could cause a headache and nothing wrong for any other purpose. So this leads to what's the treatment plan? Bertorini came in the office and once again was the MAN. He ordered an MRV, which checks the blood vessels of the brain to make sure there is no clot. He recognized that I was having the headaches less often since I was on a steroid for my cold. He also realized that I was having side effects from the quinine and depacote. So I was thrilled when he agreed with the concept of taking me off all this junk, not that I was going to keep taking them anyway. I also am not taking any pain medication, OTC or RX, unless I'm having a severe headache. I slowly want to get off these meds. I will never again take a pill without knowing exactly how it should be taken, i.e. my normal self would have done that, but lately I have failed to follow my own advice. He did RX a steroid, at a higher dose than I was on, and I feel great. Which I'm aware is the steriod, but I'm grateful that I can control the head aches with a non-narcotic.
I still have numbness in the right leg, which is bizarre. We're just working with it. It comes and goes, with no known triggers.
I've been deliberating over whether I should make an appt for the ALS center in Nashville, at Vanderbilt. An ALS center for excellence. I'm done debating and will be setting up an appt for after the first if the year.
Any hoo....the results of the MRI are good, in that they found nothing wrong...no where, that could cause a headache and nothing wrong for any other purpose. So this leads to what's the treatment plan? Bertorini came in the office and once again was the MAN. He ordered an MRV, which checks the blood vessels of the brain to make sure there is no clot. He recognized that I was having the headaches less often since I was on a steroid for my cold. He also realized that I was having side effects from the quinine and depacote. So I was thrilled when he agreed with the concept of taking me off all this junk, not that I was going to keep taking them anyway. I also am not taking any pain medication, OTC or RX, unless I'm having a severe headache. I slowly want to get off these meds. I will never again take a pill without knowing exactly how it should be taken, i.e. my normal self would have done that, but lately I have failed to follow my own advice. He did RX a steroid, at a higher dose than I was on, and I feel great. Which I'm aware is the steriod, but I'm grateful that I can control the head aches with a non-narcotic.
I still have numbness in the right leg, which is bizarre. We're just working with it. It comes and goes, with no known triggers.
I've been deliberating over whether I should make an appt for the ALS center in Nashville, at Vanderbilt. An ALS center for excellence. I'm done debating and will be setting up an appt for after the first if the year.
Tuesday, December 18, 2007
December 18th - We're back on track
Thanks to everyone that has sent us prayers, food and support during the past two weeks.
For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.
After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.
Thanks again everyone!
For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.
After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.
Thanks again everyone!
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