Hello everyone! I have to apologize for taking so long in between blogs. Last week was very eventful. Monday through Wednesday things were routine, dds appointments for Chase (no cavities); church events; water therapy; etc. Then, I woke up Thursday a.m. very sore and stiff. During the day I began to feel even worse, by Friday I was exhausted. Darrin took Deke to Dilly's so I could catch up on sleep, and also because, I knew that I couldn't have lifted him. I fell in the bathroom at some point on Friday, which luckily wasn't a bad fall, just that I landed on my rump and had my heart jump in my throat. After the fall my lower back, hips and shoulder girdle were beyond hurting. Late Friday afternoon I realized that I hadn't been taking the medicine Dilantin, which is for cramping, since Tuesday when I refilled my pill boxes and inadvertently left the Dilantin out. So while it was good to know why I'd been feeling so BAD, it sucked that I did it to myself..........sigh. It took until yesterday before the Dilantin leveled out in my system and I started feeling better.
The ALS patient rep, Linda, has had a walker delivered to the house. She had mentioned getting one for me during her visit, but I just blew it off, in the way that those who know me well, know how I do. After the fall and a talking too (in a nice way) by Darrin, I asked for the walker.
So, on a more positive note! I was considering getting a diaphragm pacer, which would help prolong my life by 18 months. In order to qualify for the placement your lung capacity has to be between 40-85%. We went yesterday for a pulmonary function test and my FVC (lung capacity) was 110%.....how's that for ya! Yeah, baby. That's more than a perfect score....oh yeah...I'm doing a little dance! I don't have to worry about no stinkin' pacer for a long while.
Of course, now that I'm feeling better, the kids aren't. Chase has had a sore throat for a week, to the point that he asked me Sunday when were we going to the doctor. Chase NEVER wants to see a doctor! Deke had a runny nose on Friday and it just started pouring. He woke up Monday a.m. and his eyes were closed with nasty drainage. It broke my heart! Off to the doctor we go. Both boys had a virus. Chase had nasty cold sores on the back of his throat and Deke's eye's and nose are infected. Since his ears were not infected, I elected to fore go any antibiotics. I did agree with some eye drops, because 1.) it looked so painful! and 2.) it's very contagious. Of course, when we got to the doctor's office Chase says, "my throat doesn't hurt anymore". Go figure! Any hoo, the doctor said it was probably viral, since the test for strep was negative. Chase was thrilled that he didn't get a shot OR have to take any medicine.
I've gotten a new laptop that has voice recognition software. I'm still navigating through it all, but so far it's fairly nifty (Thanks, JP!).
As soon as the little feller starts feeling better we'll be out and about again. Being home can be very isolating. My social soul needs to be out and about!
Tuesday, November 13, 2007
Monday, November 5, 2007
Clarification - November 5, 2007
I thought I'd clarify my last blog.....The wheelchair was given to me for when I need it, and that I don't need it yet.
We had a nice weekend. Chase and I stayed up late Friday night talking and catching up with each other. Darrin was back in time Sat for us to catch a matinee. Sunday, I slept in; cooked breakfast and then went back to sleep for another 3-4 hours. I was feeling fabulous! I needed to catch up on some rest. When I woke up I made Chase his favorite meal, shells and hamburger and made Darrin and I a hamburger casserole. I was proud that they both tasted yummy. Lately, my meals are a bit hit or miss.
Poor Deke caught a cold Friday and by Sunday was feeling puny. Nothing a little sleep and Tylenol couldn't take care of. He's back to his normal self. Into absolutely everything and being a little menace. That's what I call him, cause he can get into everything and anything in the blink of an eye. He is so curious, that he investigates everything fingers first. There's nothing he can't get a hold of, if it's in reach!
We had a nice weekend. Chase and I stayed up late Friday night talking and catching up with each other. Darrin was back in time Sat for us to catch a matinee. Sunday, I slept in; cooked breakfast and then went back to sleep for another 3-4 hours. I was feeling fabulous! I needed to catch up on some rest. When I woke up I made Chase his favorite meal, shells and hamburger and made Darrin and I a hamburger casserole. I was proud that they both tasted yummy. Lately, my meals are a bit hit or miss.
Poor Deke caught a cold Friday and by Sunday was feeling puny. Nothing a little sleep and Tylenol couldn't take care of. He's back to his normal self. Into absolutely everything and being a little menace. That's what I call him, cause he can get into everything and anything in the blink of an eye. He is so curious, that he investigates everything fingers first. There's nothing he can't get a hold of, if it's in reach!
Friday, November 2, 2007
Friday, November 2
It's been a crazy, busy week and I'm just now recovering. Tuesday night we went to the Halloween party at Dilly's and Deke won best costume. He was a chunky monkey. Wednesday, we went to the ALS clinic so that I could have my blood sucked (drawn) to test my liver function. Hopefully the results will be OK, so that I can increase my Rilutek. Also, I was given the pneumonia shot. After the clinic, Darrin went back to work and I took Deke by Kelly's office so that she could see him in costume. Of course, Deke hammed it up for her. Then I headed out to Millington for a potluck at work. It was great getting to see everyone! Well, the food was a real draw too. Wednesday night we went Trick or Treating in the subdivision. Chase pulled Deke in his wagon. We were going to go to the church for their Halloween party, but I was pooped, so we stayed home and passed out candy.
Thursday night we met with Linda Gilbert, the ALS patient coordinator. She had loads of great information and brought me a present, an umbrella wheelchair. It's similar to an umbrella stroller. Chase and Darrin have already taken me for a ride. So far, Chase has used it more than me, but that's OK with me. Chase also pointed out that it's the Collierville Dragon's color. Gotta love him! Linda also brought literature about how to Share the Care, i.e. set up a group of friends and volunteers to help out with care, meals, etc. So I'm sure I'll be hitting folks up for help.
It doesn't sound like we did that much, but that's probably because I'm still too tired to think about it all :)
Everyone enjoy the weekend and I'll rest up, so I have more to share next week.
Happy birthday Mickey and Rudy!
Thursday night we met with Linda Gilbert, the ALS patient coordinator. She had loads of great information and brought me a present, an umbrella wheelchair. It's similar to an umbrella stroller. Chase and Darrin have already taken me for a ride. So far, Chase has used it more than me, but that's OK with me. Chase also pointed out that it's the Collierville Dragon's color. Gotta love him! Linda also brought literature about how to Share the Care, i.e. set up a group of friends and volunteers to help out with care, meals, etc. So I'm sure I'll be hitting folks up for help.
It doesn't sound like we did that much, but that's probably because I'm still too tired to think about it all :)
Everyone enjoy the weekend and I'll rest up, so I have more to share next week.
Happy birthday Mickey and Rudy!
Friday, October 26, 2007
Funny stories about the boys
The other morning Nana saw Chase heating up the oven to cook two sausage and biscuits. Mom told him that he could just use the microwave and Chase responded "The directions say you have to have a microwave OVEN." You gotta love him. I have to give him props though, he did read the directions.
Lewis, Nana and Chase have taught Deke some new tricks. He can clap, do the wave and yell YAY. It was neat at first, but that's ALL he does now. It's still cute though. Deke is pushing everything around. High chair, walker, trash can, office chair and the vacuum. Every few minutes I find something he's moved from room to room. He is standing on his own for a few seconds and just so close to standing without props.
Enjoy the weekend!
Lewis, Nana and Chase have taught Deke some new tricks. He can clap, do the wave and yell YAY. It was neat at first, but that's ALL he does now. It's still cute though. Deke is pushing everything around. High chair, walker, trash can, office chair and the vacuum. Every few minutes I find something he's moved from room to room. He is standing on his own for a few seconds and just so close to standing without props.
Enjoy the weekend!
Thursday, October 25, 2007
October 25, 2007 - Great News today!
I heard from my employee disability carrier today and was told that my disability was approved. This relieves a huge burden off of me. I was concerned that my decision to stay home with the boys and Darrin could cause financial hardship on us. Of course, Darrin was never worried! He's my "No worries Man". For those that don't know, any worry or concern I've had, Darrin has found out the answer. He's still waiting for me to find something new to worry about so he can stay sharp.
Out of towners that came for the walk and the cookout
I totally forgot to even mention the friends and family that came in for the walk. Between Friday and Sunday, we had fifteen people stashed in every room of the house. Most of them swapped rooms or made sleeping adjustments after the first night...giggle. My mother and Lewis came in Wed night and were a huge help in getting everything set up and organized for the other guests and the cookout. Which, by the way, had approximately 30 guests and generated over $300 for ALS, as well as creating massive left overs. They plan to stay until Saturday a.m. and then head back to Austin. I tease her that the only reason she stayed this long was because Darrin went out of town and she could have us all to herself. We've had a truly fantastic visit.
My brother Mickey, sister-in-law Val and nephew Rudy flew in from San Fransisco Friday evening. Just after most of the cookout crew had left, but still in time for the grill to be fired back up. They stayed until Tuesday. Rudy had fun running about, playing in the street (not a regular occurrence in the hills of Berkeley) and taking a bath with Deke. We had a surprise birthday celebration for both Mickey and Rudy. Mom made Mickey's favorite cake....coconut (not my favorite by a long shot!) and they (everyone but Darrin, Chase and myself) ate it until they felt it. Mickey even packed the rest to take home to Berkeley. Mom and Lewis had given Rudy a big red Mack dump (aka TUMP. It's a word. Look it up.) truck, which was a big hit.
My friend, "my Marcia" (aka brown recluse bite victim) flew in from Chicago, Friday night at the same time as my brother and his clan. She was able to see many of her friends from the Navy world, as well as keep me company at the minor medical. Seriously, the latest on the bite is that it's doing well and appears as though it will only leave a scar the size of a chicken pox.
Darrin's cousin Matt, Amie, their three children Marie France, Barret and Woodley, as well as a 1/2 cow and hog (butchered and frozen by Yoder Meats) made the 10 hour drive from Kansas. They arrived around 2:00 a.m. Saturday a.m. and still woke up bright and shiny for the walk. They had to get back to the working world and left Sunday a.m., after the first Amie Yoder was kind enough to make me look fabulous by cutting my hair. I'm all set to let my locks grow. Although, I'm sure we'll have to find our way to Kansas for a trim in the near future.
Over the weekend we broke out the Acquire board game. Which is one of Darrin's favorite games. I have to mention that my brother beat him TWICE. Matter of fact Darrin came in dead last in the first game. Darrin had to confirm the score after tallying the totals, i.e. the game "went to paper", by then going "to the calculator". Even Mom and Marcia, who were first time players beat him. The second game he came in 3rd (I was second) only because Mickey and Darrin suckered Val into playing. Her placement was understandable since she was the newbie. I have total faith that she'll rally in the rematch.
My brother Mickey, sister-in-law Val and nephew Rudy flew in from San Fransisco Friday evening. Just after most of the cookout crew had left, but still in time for the grill to be fired back up. They stayed until Tuesday. Rudy had fun running about, playing in the street (not a regular occurrence in the hills of Berkeley) and taking a bath with Deke. We had a surprise birthday celebration for both Mickey and Rudy. Mom made Mickey's favorite cake....coconut (not my favorite by a long shot!) and they (everyone but Darrin, Chase and myself) ate it until they felt it. Mickey even packed the rest to take home to Berkeley. Mom and Lewis had given Rudy a big red Mack dump (aka TUMP. It's a word. Look it up.) truck, which was a big hit.
My friend, "my Marcia" (aka brown recluse bite victim) flew in from Chicago, Friday night at the same time as my brother and his clan. She was able to see many of her friends from the Navy world, as well as keep me company at the minor medical. Seriously, the latest on the bite is that it's doing well and appears as though it will only leave a scar the size of a chicken pox.
Darrin's cousin Matt, Amie, their three children Marie France, Barret and Woodley, as well as a 1/2 cow and hog (butchered and frozen by Yoder Meats) made the 10 hour drive from Kansas. They arrived around 2:00 a.m. Saturday a.m. and still woke up bright and shiny for the walk. They had to get back to the working world and left Sunday a.m., after the first Amie Yoder was kind enough to make me look fabulous by cutting my hair. I'm all set to let my locks grow. Although, I'm sure we'll have to find our way to Kansas for a trim in the near future.
Over the weekend we broke out the Acquire board game. Which is one of Darrin's favorite games. I have to mention that my brother beat him TWICE. Matter of fact Darrin came in dead last in the first game. Darrin had to confirm the score after tallying the totals, i.e. the game "went to paper", by then going "to the calculator". Even Mom and Marcia, who were first time players beat him. The second game he came in 3rd (I was second) only because Mickey and Darrin suckered Val into playing. Her placement was understandable since she was the newbie. I have total faith that she'll rally in the rematch.
Tuesday, October 23, 2007
Oct. 23, 2007 - After the walk
Thanks to everyone that donated, contributed and walked with our team. We had family that walked in cities at other ALS walks and others who created their own walk and walked at the same time as we did. Each of you share a special place in my heart. To try and express how your support makes me feel is an impossibility. Together our team has currently raised almost $9,000. The monies turned in at the walk have yet to be posted, but we expect the totals to be over $12,000.
For those of you who weren't at the walk, I'll try and provide a narrative description of the day. Our journey to the walk was a bit lengthy, because "we" didn't know where exactly at the park the walk was going to be. After touring the surrounding 3 mile radius of the park, we finally found our team. Of course, since they're friends, they expected nothing more from me. Once we arrived, we spent the time before the walk talking and taking group pictures. I'll forward these along once they've been sent to me, which I believe will be in a week or so.
During our group pictures Kelly took a tumble in a hole. Of course, Kelly being Kelly, rallied quickly and lead the team for the entire walk. For those that are concerned, she's alright, but extremely sore. We're hoping that there isn't any permanent damage.
The walk was suppose to be for 3 miles, but a6fter the first lap, the majority of the folks quit walking. I know that after one lap I was D O N E. The only person (of the hundreds attending) that walked the full 3 miles was Mackie (Darrin's partners wife). You could almost see the smoke coming of her feet because she moved so fast.
After the walk the team converged on the pizzas that were donated by Johnnie Brusco's and the ribs from Texas Roadhouse. I have to admit that I just needed to sit and used the ruse of eating pizza as my cover for near exhaustion. All the kids played in the space walk, had their faces painted and ran around like crazy loons.
Once I'd rested a bit, I met some of the other people that had ALS, several of whom I've been communicating with via email. Each of these people were able to give me amazing advice. I believe the most touching moment of the walk was after the majority of the people had actually left. Debbie Smith (of the Dream team - blue shirts and #1 fund raising team) asked to meet with me. Her advice touched me deeply. Even though this was the first time we had met her, we shared a bond that isn't easily defined. We had downloaded her story from the MDA telethon and since Chase had seen it, he had wanted to meet her. He'd even written a paper for school that had incorporated her story. We found it curious that this one person had seemed to have such an impact on Chase. Chase met her at the walk and talked with her. This was the first time since my diagnosis that Chase had really gotten emotional. He placed his Strike Out ALS bracelet on her arm and she told him, "Your mom is a fighter and that's what you need to be with this stupid disease." I'm sure there were other things shared between them, but this was what Chase remembered. We'll be contacting Debbie and hope to see her again soon.
It turns out that Kelly's fall wasn't the only thing we had to be concerned about. My friend Marcia who'd come from Chicago for the walk, had noticed what she thought was a a blister on her forearm Friday morning, had become inflamed, swollen and not so pretty by Friday night. Saturday morning it had spread even further into the surrounding tissue. After the walk, I took her to the minor medical and she was diagnosed with having a brown recluse spider bite. The doctor described the bite as being moderate to severe and treated it very aggressively. Marica had 3 injections before she left: an antibiotic, a steroid and tetanus. The doctor also prescribed 4 medicines to get filled after we left. One of these she had to do blood work for, to make certain she didn't have a certain gene, because if she did she would die if she took this medicine. The entire situation was surreal. I tried to take her mind off things by pointing out that if she'd wanted some alone time with me, she didn't have to go to such extremes. Marcia returned home Sunday night, saw her doctor Monday morning an6d also had the exterminators out. The bite seemed to be doing better, but now seems to be changing color. So she goes back to the doctor again today. The doctor here had told her that no matter how she was treated that it may not stop the tissue from dying. We're hoping that it's going to be getting better quickly. I'm going to try an add photos to the blog as well.
For those of you who weren't at the walk, I'll try and provide a narrative description of the day. Our journey to the walk was a bit lengthy, because "we" didn't know where exactly at the park the walk was going to be. After touring the surrounding 3 mile radius of the park, we finally found our team. Of course, since they're friends, they expected nothing more from me. Once we arrived, we spent the time before the walk talking and taking group pictures. I'll forward these along once they've been sent to me, which I believe will be in a week or so.
During our group pictures Kelly took a tumble in a hole. Of course, Kelly being Kelly, rallied quickly and lead the team for the entire walk. For those that are concerned, she's alright, but extremely sore. We're hoping that there isn't any permanent damage.
The walk was suppose to be for 3 miles, but a6fter the first lap, the majority of the folks quit walking. I know that after one lap I was D O N E. The only person (of the hundreds attending) that walked the full 3 miles was Mackie (Darrin's partners wife). You could almost see the smoke coming of her feet because she moved so fast.
After the walk the team converged on the pizzas that were donated by Johnnie Brusco's and the ribs from Texas Roadhouse. I have to admit that I just needed to sit and used the ruse of eating pizza as my cover for near exhaustion. All the kids played in the space walk, had their faces painted and ran around like crazy loons.
Once I'd rested a bit, I met some of the other people that had ALS, several of whom I've been communicating with via email. Each of these people were able to give me amazing advice. I believe the most touching moment of the walk was after the majority of the people had actually left. Debbie Smith (of the Dream team - blue shirts and #1 fund raising team) asked to meet with me. Her advice touched me deeply. Even though this was the first time we had met her, we shared a bond that isn't easily defined. We had downloaded her story from the MDA telethon and since Chase had seen it, he had wanted to meet her. He'd even written a paper for school that had incorporated her story. We found it curious that this one person had seemed to have such an impact on Chase. Chase met her at the walk and talked with her. This was the first time since my diagnosis that Chase had really gotten emotional. He placed his Strike Out ALS bracelet on her arm and she told him, "Your mom is a fighter and that's what you need to be with this stupid disease." I'm sure there were other things shared between them, but this was what Chase remembered. We'll be contacting Debbie and hope to see her again soon.
It turns out that Kelly's fall wasn't the only thing we had to be concerned about. My friend Marcia who'd come from Chicago for the walk, had noticed what she thought was a a blister on her forearm Friday morning, had become inflamed, swollen and not so pretty by Friday night. Saturday morning it had spread even further into the surrounding tissue. After the walk, I took her to the minor medical and she was diagnosed with having a brown recluse spider bite. The doctor described the bite as being moderate to severe and treated it very aggressively. Marica had 3 injections before she left: an antibiotic, a steroid and tetanus. The doctor also prescribed 4 medicines to get filled after we left. One of these she had to do blood work for, to make certain she didn't have a certain gene, because if she did she would die if she took this medicine. The entire situation was surreal. I tried to take her mind off things by pointing out that if she'd wanted some alone time with me, she didn't have to go to such extremes. Marcia returned home Sunday night, saw her doctor Monday morning an6d also had the exterminators out. The bite seemed to be doing better, but now seems to be changing color. So she goes back to the doctor again today. The doctor here had told her that no matter how she was treated that it may not stop the tissue from dying. We're hoping that it's going to be getting better quickly. I'm going to try an add photos to the blog as well.
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