Did another week pass by already? So sorry. I know you look here to see how I am doing and then I don't even bother to comment. I will try and do a better job.
First things first.
For the week of February 17-23: 86.04miles were reported into me. I confess that only a 1/4 of a mile was mine so again I must thank you for carrying me. I better step it up or I am going to have 10 mile days in front of me pretty soon.
Even though I have only been to the gym twice in the past two weeks, I have continued to go to WW and have losses on the books both weeks. Don't get too excited, I still haven't hit that first 5 pounds but I am going to. Just like I am going to walk 1044 miles. I really believe I can do it.
Yesterday I had a bit of a reality check. A reminder that somehow, someday, I need to get OK with having a "New Normal". That's a hard concept really. I know it's something I can create and although I once believed my actions controlled my destiny, I know better now. Actions create results and/or consequences but God is in control of what tomorrow will bring and I just need to trust in Him.
Today I had my monthly lab work done. I will let you know the results when I get that call from Dr. Cohen. My next appointment with her is the first week of April. I don't believe I will be switched to the Cellcept before that. Today when I asked her about it again I found myself thinking how terrible it feels to be on the receiving end of an "I told you so..." and decided that I am going to be patient with regards to this change.
Another thing that might be of interest to you....my average last week for "How do I feel" came out to be 4.75. I had two days of "6's", and Thursday and Friday were both low number days 2.25 and 3 respectively.
Today I leave you with this thought,
You Can....
(fill in the rest with something important to you).
I can hear it now... Bill saying "OK, you sound like Oprah?" Said with a smile and endearment in his voice :0)
Thank you for checking in.
Talk to you soon.
Kris B
Tuesday, February 26, 2008
Monday, February 18, 2008
The week of February 10th
The week of February 10th we walked 22.15 miles. Welcome Beth and Vicki, so glad to have your miles.
Onward....
Thank you.
Kris B
Onward....
Thank you.
Kris B
A week's worth of updates in one entry
Sorry for dropping the ball last week. Believe me, I thought of you often but my mind and energy were wrapped up in how I am going to use my diagnosis with Myositis to make a difference in someone else's life. I've written letters to three women who have inspired me along the way and hope that one of them might be able to share what they learned about fundraising so that I am not reinventing the wheel. Don't worry, the walking is going to continue and I am going to trek 1044 miles (as are you) but I am fairly certain I am going to sell tshirts too. I am waiting to hear back from the Myosistis Association with permission to use their logo. 100% of the profits will go toward my fundraising campaign. Did I happen to mention I'm shooting for a $10,000 goal now instead of $1044.00 For those of you who have already made a cash donation, I will send you a tshirt hot off the presses as my thank you. For those of you wondering how you can help....I will be selling tshirts for $25.00. You can buy one and wear it everywhere. In so doing, you will be helping me raise awareness and money for research. I also think the back of the tshirt is very inspiring so along with awareness and money for research you will be INSPIRING without having to say a word. The most cost effective way to do this (and raise the most money) would be to take orders (and payment) and then place the order once I have enough to offer a cost break.
OK, enough about that for now.
Here is an update of things I wanted to tell you last week:
Last Saturday night around 7:00 PM I went upstairs to give myself the first half of my methotrexate for the weekend. I took a syringe from the bag and it was HUGE. The needle was nearly three inches long and the barrel was the size of a sharpie marker. No thank you....after a moment of consideration and Bill suggesting that maybe I should just inject it half way in I decided I would pass and take my changes with a full dose the following day. In church on Sunday Emma snuggled in next to me and commented that I wasn't hot and sweaty. We both enjoyed that close moment and it only made it more special sharing it in church.
Sunday afternoon we took a family trip to Cabella's. The moment never to be forgotten from this adventure was Jake's overwhelming excitement over the fishing area. He loves fishing so you can imagine how the aquarium and the rows and rows of fishing poles and lures was amazing to him. Down one row he commented to us : "WOW this is paradise..." down another row a few minutes later he said "Mom, this must be a fisherman's heaven." Every day since then he has asked Bill when they could go back to "that store". Saturday they made the trip again and Jake has added yet another lure to his fishing box.
Wednesday morning we were met with a scare when Jake woke up and was crying because his legs hurt him so bad. He couldn't stand at the side of the bed and came down the stairs (because I can't carry him) on his bottom. You can only imagine how scared I was that one of my children could have this same muscle disease. I was terrified. Jake is fine. He did have sore legs for many days after that but it was actually a symptom of the virus that he was sick with the week before. A number of other children in his class and after school care program had the same leg aches. THANK YOU GOD.
Thursday afternoon Emma amazed me at swimming lessons. I usually spend that 40 minutes working out but this past Thursday I didn't have the energy. My little Emma bean swam nearly a mile. After class she told me she was exhausted but asked me if I would add that mile to my blog. My sweet girl....she is tracking miles for her mom. I AM BLESSED.
One last thing...Bill and I met with someone last week and before our meeting started he asked if he could share a prayer with us. It was very simple:
"Dear God, please give me the patience to tread water until I am strong enough to swim."
Isn't that just wonderfully simple. I can't tell you how many times I thought about that since last Monday but I can tell I wasn't in the pool. I applied it and shared it with others when the opportunity presented itself.
I've got to go. Tonight is BUNKO night with the ladies and I have dinner to start.
Thanks again for checking in. I will send out a mileage update for last week shortly.
Kris Lane
Make the most of every moment.
OK, enough about that for now.
Here is an update of things I wanted to tell you last week:
Last Saturday night around 7:00 PM I went upstairs to give myself the first half of my methotrexate for the weekend. I took a syringe from the bag and it was HUGE. The needle was nearly three inches long and the barrel was the size of a sharpie marker. No thank you....after a moment of consideration and Bill suggesting that maybe I should just inject it half way in I decided I would pass and take my changes with a full dose the following day. In church on Sunday Emma snuggled in next to me and commented that I wasn't hot and sweaty. We both enjoyed that close moment and it only made it more special sharing it in church.
Sunday afternoon we took a family trip to Cabella's. The moment never to be forgotten from this adventure was Jake's overwhelming excitement over the fishing area. He loves fishing so you can imagine how the aquarium and the rows and rows of fishing poles and lures was amazing to him. Down one row he commented to us : "WOW this is paradise..." down another row a few minutes later he said "Mom, this must be a fisherman's heaven." Every day since then he has asked Bill when they could go back to "that store". Saturday they made the trip again and Jake has added yet another lure to his fishing box.
Wednesday morning we were met with a scare when Jake woke up and was crying because his legs hurt him so bad. He couldn't stand at the side of the bed and came down the stairs (because I can't carry him) on his bottom. You can only imagine how scared I was that one of my children could have this same muscle disease. I was terrified. Jake is fine. He did have sore legs for many days after that but it was actually a symptom of the virus that he was sick with the week before. A number of other children in his class and after school care program had the same leg aches. THANK YOU GOD.
Thursday afternoon Emma amazed me at swimming lessons. I usually spend that 40 minutes working out but this past Thursday I didn't have the energy. My little Emma bean swam nearly a mile. After class she told me she was exhausted but asked me if I would add that mile to my blog. My sweet girl....she is tracking miles for her mom. I AM BLESSED.
One last thing...Bill and I met with someone last week and before our meeting started he asked if he could share a prayer with us. It was very simple:
"Dear God, please give me the patience to tread water until I am strong enough to swim."
Isn't that just wonderfully simple. I can't tell you how many times I thought about that since last Monday but I can tell I wasn't in the pool. I applied it and shared it with others when the opportunity presented itself.
I've got to go. Tonight is BUNKO night with the ladies and I have dinner to start.
Thanks again for checking in. I will send out a mileage update for last week shortly.
Kris Lane
Make the most of every moment.
Saturday, February 9, 2008
YIPPEE...we broke 100 and you carried me this week
I just added up the miles since January 1st and we are at 101.05. That means we have just 943.05 miles to go. I had to listen to my body this week and take a break from the WAC. After adding up the combined miles though I am inspired to get back there. It's important for me to remember (and you too) that it's one step at a time. If I can only walk for five minutes it still counts and it's still getting me closer to Denver.
When I was resting this afternoon my mind was spinning with all the different ways and the many groups of people I could work with to raise money and awareness for Myositis.
Should I plan a walk/run for Myositis? Possibly a 5K through Bayside? or should I have cool t-shirts made that people could make a donation to purchase and then wear while they are walking or running to Denver with me? I am, of course, way out of my league on this but again, if you have any ideas or know any talented people who have done this kind of thing before, let me know.
It is so much nicer to focus on something GRAND than the everyday yuck that comes with this disease.
Thanks for hanging in there with me the last couple of days while I was offering less than positive words.
If you find yourself in a bookstore, please look for the book "The Pig of Happiness" by Edward Monkton. I received a copy of it in the mail this week from my sister-in-law Meg and it makes me smile. You will smile too, I promise.
Good Night.
Kris
When I was resting this afternoon my mind was spinning with all the different ways and the many groups of people I could work with to raise money and awareness for Myositis.
Should I plan a walk/run for Myositis? Possibly a 5K through Bayside? or should I have cool t-shirts made that people could make a donation to purchase and then wear while they are walking or running to Denver with me? I am, of course, way out of my league on this but again, if you have any ideas or know any talented people who have done this kind of thing before, let me know.
It is so much nicer to focus on something GRAND than the everyday yuck that comes with this disease.
Thanks for hanging in there with me the last couple of days while I was offering less than positive words.
If you find yourself in a bookstore, please look for the book "The Pig of Happiness" by Edward Monkton. I received a copy of it in the mail this week from my sister-in-law Meg and it makes me smile. You will smile too, I promise.
Good Night.
Kris
Friday, February 8, 2008
It's Friday
It's Friday and we had Parent Teacher conferences this morning. Wonderful words were shared about our dear Jake and Emma and the progress in their respective classrooms.
Jake continues to be sick and this afternoon went back to see Dr. Paley. Double ear infection. Poor thing. He really feels lousy.
I took a very long nap this afternoon. I am hoping that perks me up for a productive and enjoyable weekend.
Bill continues to keep the house floating. He often says he wishes there was something he could do to make me feel better. He is amazing. He can work successfully from home and juggle the family taxi service to dance class, do the laundry, make the meals, shovel the driveway (over and over and over again) pick up the prescriptions and calmly and supportively tell me how important it is for me to rest when my body tells me to. He assures me that he and the kids understand.
It's hard though.
More to follow tomorrow. I'll add up the miles and report them to everyone on Saturday.
Good Night.
Kris
Jake continues to be sick and this afternoon went back to see Dr. Paley. Double ear infection. Poor thing. He really feels lousy.
I took a very long nap this afternoon. I am hoping that perks me up for a productive and enjoyable weekend.
Bill continues to keep the house floating. He often says he wishes there was something he could do to make me feel better. He is amazing. He can work successfully from home and juggle the family taxi service to dance class, do the laundry, make the meals, shovel the driveway (over and over and over again) pick up the prescriptions and calmly and supportively tell me how important it is for me to rest when my body tells me to. He assures me that he and the kids understand.
It's hard though.
More to follow tomorrow. I'll add up the miles and report them to everyone on Saturday.
Good Night.
Kris
Thursday, February 7, 2008
Fatigue
Just a quick update.
I have been smacked with a high level of fatigue this week. Emma was home from school on Thursday afternoon and Friday with a fever and bad cold. Jake joined in the fun and symptoms on Friday. Bill was in bed all day Monday (Jake was on the couch) and felt bad enough to drag himself to the urgent care on Monday evening to be diagnosed with strep throat. Tuesday, Bill took Jake to the doctor and found out that he had inflammation in his lungs. Our little guy is taking prednisone now too along with an inhaler. Jake hasn't been back to school and today and tomorrow are Parent Teacher conferences.
Could be that my body is just trying to fight what's going around (cold/flu) but it sucks.
Hi ho, hi ho, back to the couch I go....
I will be meditating and praying for the energy you all are going to send my way.
Thanks
Kris
I have been smacked with a high level of fatigue this week. Emma was home from school on Thursday afternoon and Friday with a fever and bad cold. Jake joined in the fun and symptoms on Friday. Bill was in bed all day Monday (Jake was on the couch) and felt bad enough to drag himself to the urgent care on Monday evening to be diagnosed with strep throat. Tuesday, Bill took Jake to the doctor and found out that he had inflammation in his lungs. Our little guy is taking prednisone now too along with an inhaler. Jake hasn't been back to school and today and tomorrow are Parent Teacher conferences.
Could be that my body is just trying to fight what's going around (cold/flu) but it sucks.
Hi ho, hi ho, back to the couch I go....
I will be meditating and praying for the energy you all are going to send my way.
Thanks
Kris
Monday, February 4, 2008
As of February 2nd....
As of February 2nd we have crossed 80.80 miles together. That's wonderful. I am keeping track of my miles separately and when I get under the 1000 miles to go, I'll let you know.
I received an email from my friend Chris that her family was going to join us in the miles and a few others have mentioned that they will send their miles to me on a monthly basis.
THANK YOU, THANK YOU, THANK YOU....
Aside from motivating me to be active, this journey has inspired me to actually attend the conference in Denver. I had been asked earlier if I planned to go and I said I really didn't think so. You see, I am afraid to see the different levels that this disease effects people. That being said, each mile that we get closer to Denver, I realize this is a group of people that I can support and receive support from.
On Thursday afternoon I received a call from Dr. Cohen with the results from my lab work. My thyroid numbers are up and my inflammation numbers are up. We discussed a possible change from Imuran to Cellcept. The following day she called me and said she had thought it over and she doesn't believe the timing is right and she recommended we hold off on this change. Our first goal has got to be to get off of prednisone or at least to a minimal dose (something under 10 mg would be my hope) However, on Saturday when Bill went to pick up our prescriptions he came home with a very large bottle of Cellcept. I left a message for her and will let you know if and when this change will take place and what can be expected from it.
Sunday was really hard. The muscles in my arms are very achey and my skin hurts. I have been reading the Deanna Favre book and I may have found a connection. In the book she describes the side effects of a "chemotherapy cocktail". Although I take different kinds of chemotherapy drugs some of the symptoms I thought were related to my disease could possibly be the results of the drugs I take. I now have a new way to possibly analyze the statistics I keep on my "How I feel" spreadsheet. I already know that my low number day is almost always Sunday or Monday and my highest number day is almost always Thursday or Friday. Once I get the bugs worked out I think I might share the spreadsheet with other members of the Myositis Association. It's been helpful to me to put a "value" to how I feel.
Thanks for checking in.
Here's my quote for today:
"About all you can do in life is be who you are." -- Rita Mae Brown
klb
I received an email from my friend Chris that her family was going to join us in the miles and a few others have mentioned that they will send their miles to me on a monthly basis.
THANK YOU, THANK YOU, THANK YOU....
Aside from motivating me to be active, this journey has inspired me to actually attend the conference in Denver. I had been asked earlier if I planned to go and I said I really didn't think so. You see, I am afraid to see the different levels that this disease effects people. That being said, each mile that we get closer to Denver, I realize this is a group of people that I can support and receive support from.
On Thursday afternoon I received a call from Dr. Cohen with the results from my lab work. My thyroid numbers are up and my inflammation numbers are up. We discussed a possible change from Imuran to Cellcept. The following day she called me and said she had thought it over and she doesn't believe the timing is right and she recommended we hold off on this change. Our first goal has got to be to get off of prednisone or at least to a minimal dose (something under 10 mg would be my hope) However, on Saturday when Bill went to pick up our prescriptions he came home with a very large bottle of Cellcept. I left a message for her and will let you know if and when this change will take place and what can be expected from it.
Sunday was really hard. The muscles in my arms are very achey and my skin hurts. I have been reading the Deanna Favre book and I may have found a connection. In the book she describes the side effects of a "chemotherapy cocktail". Although I take different kinds of chemotherapy drugs some of the symptoms I thought were related to my disease could possibly be the results of the drugs I take. I now have a new way to possibly analyze the statistics I keep on my "How I feel" spreadsheet. I already know that my low number day is almost always Sunday or Monday and my highest number day is almost always Thursday or Friday. Once I get the bugs worked out I think I might share the spreadsheet with other members of the Myositis Association. It's been helpful to me to put a "value" to how I feel.
Thanks for checking in.
Here's my quote for today:
"About all you can do in life is be who you are." -- Rita Mae Brown
klb
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