On Tuesday, April 1st I was inspired by it being the first day of a brand new month, the sun was shining and the daylight hours are longer....I walked to the voting location after dinner (about a mile). It felt great. Granted I had to slow down my pace a couple of times and I was freezing cold by the time I got home but all was good.
Yesterday, about 4:00 PM my legs started to ache. During dinner I had a hard time being comfortable, by 7:00 I was laying in bed. I took the medication that I have on hand for this type of thing and then was awake most of the night. Thankfully by 10 PM or so my legs didn't hurt anymore but the medicine wired me up. I finished a book and started another one and before I knew it the alarm clock was going off announcing to me a brand new day.
Today, my legs don't hurt at all.
My appointment with Dr. Cohen went well. We are starting down a new path today. No more Methotrexate and no more Imuran but still 20 mgs of prednisone with a plan to taper over the next 12 weeks down to 5 mg every other day. In a week, once the two immunosuppressive drugs are out of my blood (it takes much longer for it to leave the muscle) I will start on a new drug called Cellcept. It will take a number of weeks for me to work my way up to a full strength dose and possibly a couple of months for me to see and feel it's effectiveness but I am thrilled to be trying something new and the thought of no more needles on the weekends is THRILLING.
I did have a chest xray done as well as routine lab work and will let you know if there is anything worth reporting once I get the results back.
Thanks for checking in.
klb
Thursday, April 3, 2008
Tuesday, April 1, 2008
We're back
We're back from a beautiful vacation in Arizona. While I was gone a number of people reported in their miles. We are adding 57 miles to our journey to Denver. OUTSTANDING. One morning in Arizona Emma joined Grandma Luebke for 1.5 mile walk and they were lucky enough to cross paths with a desert coyote. A memory both of them will cherish I am sure.
A quick health update....
I was a little concerned about heat and sun exposure and how that might effect me. Turns out it didn't effect me at all except to brighten my spirits and take a bit of the pastey white skin away.
Sunshine, everyday.....wow. It was awesome.
On Thursday I have a follow up appointment to see Dr. Cohen. I am still taking 20mg of prednisone and will look to begin the tapering process again with this next visit. It really does make me feel better, though I can not stand the side effects (cravings that are very difficult to get under control and the weight control issues that go with it). I'm sticking with Weight Watchers and although the pounds aren't flying off, thankfully they aren't flying on either.
A update on the tshirt fund raiser....
I am working with my sister-in-law, Meg on the tshirt design and hope to have things finalized by the end of April. At that time I will distribute order forms. Rather than order a large supply upfront and take the chance of having an overflow of inventory, I am going to order what people want. More to follow on that....
Thanks again for checking in.
klb
Quote for the day:
"Happiness depends.../ Less on exterior things than most suppose." -- William Cowper
A quick health update....
I was a little concerned about heat and sun exposure and how that might effect me. Turns out it didn't effect me at all except to brighten my spirits and take a bit of the pastey white skin away.
Sunshine, everyday.....wow. It was awesome.
On Thursday I have a follow up appointment to see Dr. Cohen. I am still taking 20mg of prednisone and will look to begin the tapering process again with this next visit. It really does make me feel better, though I can not stand the side effects (cravings that are very difficult to get under control and the weight control issues that go with it). I'm sticking with Weight Watchers and although the pounds aren't flying off, thankfully they aren't flying on either.
A update on the tshirt fund raiser....
I am working with my sister-in-law, Meg on the tshirt design and hope to have things finalized by the end of April. At that time I will distribute order forms. Rather than order a large supply upfront and take the chance of having an overflow of inventory, I am going to order what people want. More to follow on that....
Thanks again for checking in.
klb
Quote for the day:
"Happiness depends.../ Less on exterior things than most suppose." -- William Cowper
Wednesday, March 19, 2008
Fatigue Follow up....
Isn't it amazing how God puts the right people in our lives and then out of nowhere gives them the right words and the right timing.
I just received this prayer from my friend Jan. I opened the email just moments after I wrote the last blog entry.
Fatigue...God's way of making sure I am exactly where I am meant to be.
Thank you Jan.
klb
"May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are treasured by God. Let God’s presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."
I just received this prayer from my friend Jan. I opened the email just moments after I wrote the last blog entry.
Fatigue...God's way of making sure I am exactly where I am meant to be.
Thank you Jan.
klb
"May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are treasured by God. Let God’s presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."
Fatigue...
Can you think of anything good about fatigue? I am struggling to find the positve here but am fairly certain that if I write about it someone out there might have something to say or just the therapy of writing will get me there.
There is a difference between fatigue and tired. Fatigue is having to sit down after blowing my hairdry just to gather up enough energy to do the next thing necessary to get ready for the day.
Fatigue is the feeling I have sometimes when I am at the bottom of the stairs wondering if I really need whatever I was headed for or if it can wait. Fatigue is when I can't convince myself that it would be easier to stop at the store right when I am driving by instead of thinking if I go home and lay down for 20 minutes I will feel so much better.
Fatigue is the reason I called the doctor last week Friday and continued to be persistant so that I could see her before we go on our family vacation to Arizona next week.
I saw the doctor today. The strength tests that she does each time I see her were repeated again today and I am showing signs of weakness. I also have this crazy cycle going on...I am not sleeping well because I can't get comfortable. Not being comfortable/not sleeping impacts the level of fatigue I am experiencing. The level of fatigue I am experiencing is keeping me from exercise. Not exercising is not good for my mind or my body.
I might try Yoga again but I am really hoping I can find a DVD to do at home. I need something "gentle" and although I just celebrated a birthday, I don't feel as though I am ready to be outexercised by a "senior version" I was not comfortable doing this in a group setting. I would also be interested in trying thai chi. I think Meg has written on occassion of using that. Meg, if you have a DVD recommendation for that I would be open to exploring it further.
Back to the doctor appointment. After much discussion it was determined that I would bump up my prednisone from 5mg to 20mg to get me comfortable again and then we will taper it down to 10mg. Although I hope that's not the final answer, many people need that much to keep the disease under control. She added a new prescription called "Flexeril" that is suppose to help the muscular/skeletal symptoms (possibly fibromyalgia) which is not a disease but a condition that might be a part of the cycle mentioned above.
I will see Dr. Cohen again when I get back from AZ and we will have new discussions regarding changes in the big medications. Will we give up on the Imuran and Methotrexate combination in hopes of better results with cellcept?
OK, that's it. Although I don't feel any better regarding fatigue, I do feel better having talked to you.
Keep walking and I'll keep smiling.
klb
There is a difference between fatigue and tired. Fatigue is having to sit down after blowing my hairdry just to gather up enough energy to do the next thing necessary to get ready for the day.
Fatigue is the feeling I have sometimes when I am at the bottom of the stairs wondering if I really need whatever I was headed for or if it can wait. Fatigue is when I can't convince myself that it would be easier to stop at the store right when I am driving by instead of thinking if I go home and lay down for 20 minutes I will feel so much better.
Fatigue is the reason I called the doctor last week Friday and continued to be persistant so that I could see her before we go on our family vacation to Arizona next week.
I saw the doctor today. The strength tests that she does each time I see her were repeated again today and I am showing signs of weakness. I also have this crazy cycle going on...I am not sleeping well because I can't get comfortable. Not being comfortable/not sleeping impacts the level of fatigue I am experiencing. The level of fatigue I am experiencing is keeping me from exercise. Not exercising is not good for my mind or my body.
I might try Yoga again but I am really hoping I can find a DVD to do at home. I need something "gentle" and although I just celebrated a birthday, I don't feel as though I am ready to be outexercised by a "senior version" I was not comfortable doing this in a group setting. I would also be interested in trying thai chi. I think Meg has written on occassion of using that. Meg, if you have a DVD recommendation for that I would be open to exploring it further.
Back to the doctor appointment. After much discussion it was determined that I would bump up my prednisone from 5mg to 20mg to get me comfortable again and then we will taper it down to 10mg. Although I hope that's not the final answer, many people need that much to keep the disease under control. She added a new prescription called "Flexeril" that is suppose to help the muscular/skeletal symptoms (possibly fibromyalgia) which is not a disease but a condition that might be a part of the cycle mentioned above.
I will see Dr. Cohen again when I get back from AZ and we will have new discussions regarding changes in the big medications. Will we give up on the Imuran and Methotrexate combination in hopes of better results with cellcept?
OK, that's it. Although I don't feel any better regarding fatigue, I do feel better having talked to you.
Keep walking and I'll keep smiling.
klb
Saturday, March 15, 2008
What a week...
It's been quite a week or two...
Last week I got caught up in the excitement of helping to open a new branch of PyraMax Bank.
It's a beautiful new office in West Allis, with wonderful people and it reminded me a lot of what it was like when we opened the branch in the Third Ward. WOW, a lot has happened since than and it's a powerful reminder that there is someone else in the drivers seat of our lives.
This week I had the opportunity to travel to North Carolina for a business trip. It was a trip I walked away from inspired and excited to make a difference with the investment program at the bank. As you know, I have been forced to take advantage of the resources around me in my personal life and this trip showed me that I can do that in my business life as well. There are many people who want to help and some that are even paid to. Asking for help, not an easy thing but many times, the right thing.
On this trip I also found out that I sleep much better at home where the people I love are close by. I came to realize that a six hour work day is not something I can handle physically at this time. I had to dismiss myself from the meeting on Wednesday after six hours and that was a good thing. Although I was engaged and learning and enjoying the time, my body was telling me enough is enough.
Speaking of enough is enough, I took the pressure off of myself to cross 1044 miles individually before the conference in September. I am going to accept the help and encouragement of all of you and use your miles to help me get there. Secretly I was tracking my own but then when I figured out how much I would have to walk each week, I stopped walking entirely. The goal become overwhelming.
Since I last reported our miles, we have added 48.41 to our totals.
Thank you for all your help. Spring is right around the corner and I don't know about you but I am looking forward to walking outside again.
Talk to you soon.
Thank you very much for checking in with me.
Kris Lane
Last week I got caught up in the excitement of helping to open a new branch of PyraMax Bank.
It's a beautiful new office in West Allis, with wonderful people and it reminded me a lot of what it was like when we opened the branch in the Third Ward. WOW, a lot has happened since than and it's a powerful reminder that there is someone else in the drivers seat of our lives.
This week I had the opportunity to travel to North Carolina for a business trip. It was a trip I walked away from inspired and excited to make a difference with the investment program at the bank. As you know, I have been forced to take advantage of the resources around me in my personal life and this trip showed me that I can do that in my business life as well. There are many people who want to help and some that are even paid to. Asking for help, not an easy thing but many times, the right thing.
On this trip I also found out that I sleep much better at home where the people I love are close by. I came to realize that a six hour work day is not something I can handle physically at this time. I had to dismiss myself from the meeting on Wednesday after six hours and that was a good thing. Although I was engaged and learning and enjoying the time, my body was telling me enough is enough.
Speaking of enough is enough, I took the pressure off of myself to cross 1044 miles individually before the conference in September. I am going to accept the help and encouragement of all of you and use your miles to help me get there. Secretly I was tracking my own but then when I figured out how much I would have to walk each week, I stopped walking entirely. The goal become overwhelming.
Since I last reported our miles, we have added 48.41 to our totals.
Thank you for all your help. Spring is right around the corner and I don't know about you but I am looking forward to walking outside again.
Talk to you soon.
Thank you very much for checking in with me.
Kris Lane
Friday, March 7, 2008
Lab update
After days of voicemail tag I heard from the doctor. My lab numbers continue to have "moderate changes" indicating an increase in inflammation. She does not want to make any changes to my medications until she is able to do a physical evaluation. My next appointment is the first week of April so I will know more than.
This week wiped me out. I believe it has now been three weeks since I have been to the gym. Thankfully we "spring ahead" this weekend. When the temps get over 35 degrees I will start to walk outside again. I already have a one mile and a two mile walk measured out. I am starting to worry a little bit because at this rate (with the three weeks away from the gym) I now need to go about 35 miles a week to get to Denver. YIKES. I hope I start feeling stronger one of these days very soon. If not, let me tell you again how glad I am to have you walking with me.
I didn't want to go there alone anyway.
This week I was working with some people for the first time. One of them commented, "I wish I could have your hours". That really grabbed at my heart. I wanted to say, "Yeah, well I didn't chose this." or "You have no idea how much I love my work and how hard it is for me to leave when I feel needed and on the edge of success"
A "new normal"....I'm still working on this. I am stumped though. I will continue to pray about it and one day, I know it will be right there in front of me.
I appreciate being able to document this journey and share this experience with you.
Thank you.
Kris
This week wiped me out. I believe it has now been three weeks since I have been to the gym. Thankfully we "spring ahead" this weekend. When the temps get over 35 degrees I will start to walk outside again. I already have a one mile and a two mile walk measured out. I am starting to worry a little bit because at this rate (with the three weeks away from the gym) I now need to go about 35 miles a week to get to Denver. YIKES. I hope I start feeling stronger one of these days very soon. If not, let me tell you again how glad I am to have you walking with me.
I didn't want to go there alone anyway.
This week I was working with some people for the first time. One of them commented, "I wish I could have your hours". That really grabbed at my heart. I wanted to say, "Yeah, well I didn't chose this." or "You have no idea how much I love my work and how hard it is for me to leave when I feel needed and on the edge of success"
A "new normal"....I'm still working on this. I am stumped though. I will continue to pray about it and one day, I know it will be right there in front of me.
I appreciate being able to document this journey and share this experience with you.
Thank you.
Kris
Monday, March 3, 2008
227.74
Last week 18.5 miles were logged toward our "trip" to Denver. That brings our total to 227.74 and just 816.36 miles to go. I am starting to think through a walking event that I hope you and all your family and friends will be able to participate in. Without giving any more information (because I haven't figured it out yet) you will need to travel no further than out your front door.
More on that to come.
Yesterday (Sunday) I was just dragging. Bill gave me a "pass" from going to church but I told him I didn't want to miss church and if I was still wiped out after the service he could bring me home and I would rest the remainder of the day. When he offered to drop me off in front of church, I accepted graciously. (you know, that space is reserved for the old people to get dropped off but that's about how I felt...39 is just around the corner)
Anyway, what a sermon. It may have been written just for me, or at least that's how I felt.
The story was that of the blind man. The disciples asked Jesus "Who sinned, the man or his parents that he would be blind?" "Neither this man nor his parents sinned," Jesus replied."but this happened so that the work of God might be displayed in his life." WOW. That got me thinking. What can I do so that the work of God can be displayed through my life?
The other wonderful part of being in chuch on Sunday was seeing Deb. Deb is one of the first people I remember meeting when I came to Our Savior Lutheran Church. She is so friendly and welcoming and genuine. It's been a while since we have seen Deb. She is battling cancer and the illness and the compromised immune system has kept her from worshipping with us. She was there today and I could just hear "This Little Light of Mine...I'm gonna let her shine." as she walked down from the communion rail. I know you all pray for me, could I ask you please to add Deb to those prayers. Thank you.
I am still waiting on the results of the last lab visit. I am curious to see if it will be reflective of how I am feeling. My neck and arms (upper) tire easily and the last few days I have felt like staying in bed with the covers pulled over my head.
I remind myself that this too shall pass.
The last quote I gave you was ....
"You Can..." and you were suppose to fill in the blank.
My blank was filled with "Overcome any Obstacle" and I can.
Thank you for caring.
Thank you for checking in.
Kris B
More on that to come.
Yesterday (Sunday) I was just dragging. Bill gave me a "pass" from going to church but I told him I didn't want to miss church and if I was still wiped out after the service he could bring me home and I would rest the remainder of the day. When he offered to drop me off in front of church, I accepted graciously. (you know, that space is reserved for the old people to get dropped off but that's about how I felt...39 is just around the corner)
Anyway, what a sermon. It may have been written just for me, or at least that's how I felt.
The story was that of the blind man. The disciples asked Jesus "Who sinned, the man or his parents that he would be blind?" "Neither this man nor his parents sinned," Jesus replied."but this happened so that the work of God might be displayed in his life." WOW. That got me thinking. What can I do so that the work of God can be displayed through my life?
The other wonderful part of being in chuch on Sunday was seeing Deb. Deb is one of the first people I remember meeting when I came to Our Savior Lutheran Church. She is so friendly and welcoming and genuine. It's been a while since we have seen Deb. She is battling cancer and the illness and the compromised immune system has kept her from worshipping with us. She was there today and I could just hear "This Little Light of Mine...I'm gonna let her shine." as she walked down from the communion rail. I know you all pray for me, could I ask you please to add Deb to those prayers. Thank you.
I am still waiting on the results of the last lab visit. I am curious to see if it will be reflective of how I am feeling. My neck and arms (upper) tire easily and the last few days I have felt like staying in bed with the covers pulled over my head.
I remind myself that this too shall pass.
The last quote I gave you was ....
"You Can..." and you were suppose to fill in the blank.
My blank was filled with "Overcome any Obstacle" and I can.
Thank you for caring.
Thank you for checking in.
Kris B
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