It's been just about a month since I started cytoxin. I don't feel any different. This week I did get the OK to start tapering my prednisone and that is a good thing. For past two days I have been taking 15 mg, down from 20. Now I don't know if it's the bike ride I took last night or the reduction in prednisone but I am significantly more achey than I have been.
Over the past two weeks I have set a goal for myself to exercise 150 minutes each week. Last week I fell short by a half hour. This week......success. I have 17 minutes left to go and I plan to complete that this morning. My reward is a pedicure and my toes are so excited.
I am counting down now for the days until the Myositis Walk...just 8 days to go. So far I have about 65 people registered to walk. My goal is to have 100. Please pray for fair weather. By that mostly I am hoping that it doesn't rain.
Somehow, it will all come together.
Saturday, September 11, 2010
Wednesday, August 18, 2010
Day 2
On Monday I called the doctor to check on the lab results and although it took awhile everything indicates that it's OK for me to start taking the Cytoxan.
Yesterday I felt a little yucky around 11:00. Today I don't and I consider that to be a very good thing. I am drinking the required water and much more. Easily I drink 96 oz of water a day and after that I stop counting. This will continue to be very important because I don't want the drug to be sitting around my body messing things up. The water will flush away what's not suppose to be there.
I finished my pulmonary rehabilitation on Monday afternoon. It was very valuable experience. I learned a lot and met some wonderful people. One of the wonderful people I met was Marguerite. I know I have mentioned her before. She died last week. Her lung transplant didn't come in time. Meeting Marguerite opened my eyes to many of the blessings this diagnosis has brought me. Although Marguerite also had interstial lung disease, it wasn't diagnosed right away. The early symptoms shortness of breath and a dry cough wouldn't cause too many people to seek medical attention and even if you did, they might be inclined to tell you that there is nothing wrong.
A blessing that continues to present itself in my life is that early on while they were trying to figure out what was wrong with me I received a baseline test for just about everything...the acronyms MRI, CT, EKG, EMG all became too familiar...they looked at everything and took a baseline picture of everything. Over the years I have also learned how important it is to listen to my body. If something's not right, I don't sit around and wonder about it very long. That's what happened with my lungs. One morning I just said enough is enough. I should not be coughing every morning. There was a baseline CT of my lungs and a new picture was taken and there you have it, a new diagnosis, caught in the very early stages and treatable. What a blessing!
The end of my pulmonary rehab means that my schedule opens up a little and gives me some flexibility I didn't have before but before I go filling it with new things I need to figure out a way to continue that commitment to exercising at least three days a week. Today I have to take Jacob to swimming lessons so I am committed to swimming during that time. There...it's on the schedule. I have an appointment to get it done.
My friends, thanks for checking in. I appreciate your continued thoughts, prayers and support.
Kris B
Yesterday I felt a little yucky around 11:00. Today I don't and I consider that to be a very good thing. I am drinking the required water and much more. Easily I drink 96 oz of water a day and after that I stop counting. This will continue to be very important because I don't want the drug to be sitting around my body messing things up. The water will flush away what's not suppose to be there.
I finished my pulmonary rehabilitation on Monday afternoon. It was very valuable experience. I learned a lot and met some wonderful people. One of the wonderful people I met was Marguerite. I know I have mentioned her before. She died last week. Her lung transplant didn't come in time. Meeting Marguerite opened my eyes to many of the blessings this diagnosis has brought me. Although Marguerite also had interstial lung disease, it wasn't diagnosed right away. The early symptoms shortness of breath and a dry cough wouldn't cause too many people to seek medical attention and even if you did, they might be inclined to tell you that there is nothing wrong.
A blessing that continues to present itself in my life is that early on while they were trying to figure out what was wrong with me I received a baseline test for just about everything...the acronyms MRI, CT, EKG, EMG all became too familiar...they looked at everything and took a baseline picture of everything. Over the years I have also learned how important it is to listen to my body. If something's not right, I don't sit around and wonder about it very long. That's what happened with my lungs. One morning I just said enough is enough. I should not be coughing every morning. There was a baseline CT of my lungs and a new picture was taken and there you have it, a new diagnosis, caught in the very early stages and treatable. What a blessing!
The end of my pulmonary rehab means that my schedule opens up a little and gives me some flexibility I didn't have before but before I go filling it with new things I need to figure out a way to continue that commitment to exercising at least three days a week. Today I have to take Jacob to swimming lessons so I am committed to swimming during that time. There...it's on the schedule. I have an appointment to get it done.
My friends, thanks for checking in. I appreciate your continued thoughts, prayers and support.
Kris B
Tuesday, August 10, 2010
60 + and other information...
T-shirts
I submitted my t-shirt order for printing.
63 t-shirts were ordered and many of them will be participating in the walk on September 19th.
Ohhhhh...I hope the weather is nice that day.
I also collected $490 in donations for Myositis Research and Awareness.
Many thanks for your generosity. I know that this is a very hard time to be asking for donations and I feel blessed that so many find this to be a worthy cause.
Walk
A few people have asked about the upcoming walk.
There is no required distance, meaning it's not a 5K, 10K or anything else. It's just whatever you can do. Remember...."I____ because I can" is the t-shirt message. Just do what you can do, that's it.
We are going to total up the combined number of laps people walk and that will be our record to break in future walking events.
Medication
I haven't started my new medication yet. There was some confusion with my lab work from last week and I had to have some additional tests run yesterday. The results should be in over the next few days and then I'll get started. I've been practicing drinking a lot of water. It's always important but now it's even more important. I am up to 96 oz of pure water usually by 3:00. After that I switch to LaCroix or something like that. I keep four pennies on my desk and each time I finish a 24 oz bottle of water I move a penny to the other side of my desk. It's an easy way to help keep track of my progress. The goal is to have all four pennies need to move before I can leave work.
Singing
I went to a funeral yesterday afternoon. I have been thinking about participating in our church choir for awhile now and it just seemed right to honor Chuck's life and join the choir voices for his service. Unfortunately that didn't work out for me. Humidity makes it a little harder for me to breathe and my pulmonary rehab has taught me a new way to breathe which is not conducive to the breathing you do while you are singing. A deep breath in and and an exhale (3 count out) doesn't work when you are singing. I guess I will continue to raise my voice from the church pew versus the choir loft and of course, in the car too...much to my family's dismay.
Have a great day.
Kris B
I submitted my t-shirt order for printing.
63 t-shirts were ordered and many of them will be participating in the walk on September 19th.
Ohhhhh...I hope the weather is nice that day.
I also collected $490 in donations for Myositis Research and Awareness.
Many thanks for your generosity. I know that this is a very hard time to be asking for donations and I feel blessed that so many find this to be a worthy cause.
Walk
A few people have asked about the upcoming walk.
There is no required distance, meaning it's not a 5K, 10K or anything else. It's just whatever you can do. Remember...."I____ because I can" is the t-shirt message. Just do what you can do, that's it.
We are going to total up the combined number of laps people walk and that will be our record to break in future walking events.
Medication
I haven't started my new medication yet. There was some confusion with my lab work from last week and I had to have some additional tests run yesterday. The results should be in over the next few days and then I'll get started. I've been practicing drinking a lot of water. It's always important but now it's even more important. I am up to 96 oz of pure water usually by 3:00. After that I switch to LaCroix or something like that. I keep four pennies on my desk and each time I finish a 24 oz bottle of water I move a penny to the other side of my desk. It's an easy way to help keep track of my progress. The goal is to have all four pennies need to move before I can leave work.
Singing
I went to a funeral yesterday afternoon. I have been thinking about participating in our church choir for awhile now and it just seemed right to honor Chuck's life and join the choir voices for his service. Unfortunately that didn't work out for me. Humidity makes it a little harder for me to breathe and my pulmonary rehab has taught me a new way to breathe which is not conducive to the breathing you do while you are singing. A deep breath in and and an exhale (3 count out) doesn't work when you are singing. I guess I will continue to raise my voice from the church pew versus the choir loft and of course, in the car too...much to my family's dismay.
Have a great day.
Kris B
Saturday, August 7, 2010
Psalm 46:10
"Be still and know that I am God"
Be still and know that I am
Be still and know
Be still
Be
Thursday, July 29, 2010
Slight, modest is better than...
As you know from my most recent post I had a number of medical appointments this week.
On Tuesday I saw Dr. Cohen and she was really pleased with how my lungs sounded and the improvement in my overall strength. She believes this is from the pulmonary rehabilitation and I have to agree. Exercising three days a week for two hours has to have some positive effects. Yeah me! I am getting stronger.
On Wednesday I saw Dr. Adl. She was also pleased with my breathing and how my lungs sounded. Clinically I am doing great.
Then there is the results of the Pulmonary Function Test and the CT Scan. Dr. Adl used words like "slight improvement" and "modest change" followed by "not what I was hoping for" and "I expected more" and "don't be discouraged". Although this isn't great, it is better than words like "progressed" or "advanced".
She told me she would be in touch with Dr. Cohen to discuss another course of treatment and one of them would call me.
Late yesterday afternoon I received a call from Dr. Cohen. She had spoken to Dr. Adl and apparently it's time to "put the gas peddle down" with regards to the treatment of my lungs. She said treating my lungs will take priority over treating the myositis. Together they decided to add to the mix of medications I currently take a drug called Cytoxan. Don't look it up.
Today I will meet with Dr. Cohen to get the information on the drug. I won't start it this weekend because I am going to be in Eagle River and the side effects can be unpleasant. I also want to talk to my internal medicine doctor because I am starting to feel a little overwhelm processing this information. Basically I want/need someone to look at me as a whole person. Specialists are great and I hold a tremendous amount of confidence and respect for the doctors I am working with but one has my lungs as her special interest and one has my myositis as her special interest and I need someone to "quarterback" for me now.
I asked for a copy of the Mary and Martha sermon and I wrote down the close in my book of quotes. It's one I am holding on to very tight right now.
"Never will I leave you and never will I forsake you. In that peace and joy, you can let go. You can let go of worry, the fear, the stress. You can lay your burdens down and let Jesus carry them awhile. So lay them down and listen... because Jesus is speaking...to you. And that is the one important thing needed. Amen."
On Tuesday I saw Dr. Cohen and she was really pleased with how my lungs sounded and the improvement in my overall strength. She believes this is from the pulmonary rehabilitation and I have to agree. Exercising three days a week for two hours has to have some positive effects. Yeah me! I am getting stronger.
On Wednesday I saw Dr. Adl. She was also pleased with my breathing and how my lungs sounded. Clinically I am doing great.
Then there is the results of the Pulmonary Function Test and the CT Scan. Dr. Adl used words like "slight improvement" and "modest change" followed by "not what I was hoping for" and "I expected more" and "don't be discouraged". Although this isn't great, it is better than words like "progressed" or "advanced".
She told me she would be in touch with Dr. Cohen to discuss another course of treatment and one of them would call me.
Late yesterday afternoon I received a call from Dr. Cohen. She had spoken to Dr. Adl and apparently it's time to "put the gas peddle down" with regards to the treatment of my lungs. She said treating my lungs will take priority over treating the myositis. Together they decided to add to the mix of medications I currently take a drug called Cytoxan. Don't look it up.
Today I will meet with Dr. Cohen to get the information on the drug. I won't start it this weekend because I am going to be in Eagle River and the side effects can be unpleasant. I also want to talk to my internal medicine doctor because I am starting to feel a little overwhelm processing this information. Basically I want/need someone to look at me as a whole person. Specialists are great and I hold a tremendous amount of confidence and respect for the doctors I am working with but one has my lungs as her special interest and one has my myositis as her special interest and I need someone to "quarterback" for me now.
I asked for a copy of the Mary and Martha sermon and I wrote down the close in my book of quotes. It's one I am holding on to very tight right now.
"Never will I leave you and never will I forsake you. In that peace and joy, you can let go. You can let go of worry, the fear, the stress. You can lay your burdens down and let Jesus carry them awhile. So lay them down and listen... because Jesus is speaking...to you. And that is the one important thing needed. Amen."
Monday, July 26, 2010
Status update
I spent a little time this afternoon updating my fundraising/awareness spreadsheet and so far I have received over $500 in donations, sold 49 t-shirts and have 39 people signed up to walk with me on September 19th. I better get busy sending out thank you notes!
Today I had pulmonary rehab and found out I am nearing the end of my 12 week course. I know I am able to use the same facility for a "maintanence" type of service but I don't have all the details on that as of yet. I also had a CT Scan of my lungs done and a repeat pulmonary function test. The results of those tests will be sent to my doctors and I will know more after seeing them.
I see Dr Cohen (rheumatologist) tomorrow and Dr. Adl (pulmonologist) on Wednesday. I will provide a medical "status update" later this week.
Let me leave you with the quote I came across over the week-end...
There are two ways to live your life
One is as though nothing is a miracle
The other is as though everything is a miracle.
- Albert Einstein-
Today I had pulmonary rehab and found out I am nearing the end of my 12 week course. I know I am able to use the same facility for a "maintanence" type of service but I don't have all the details on that as of yet. I also had a CT Scan of my lungs done and a repeat pulmonary function test. The results of those tests will be sent to my doctors and I will know more after seeing them.
I see Dr Cohen (rheumatologist) tomorrow and Dr. Adl (pulmonologist) on Wednesday. I will provide a medical "status update" later this week.
Let me leave you with the quote I came across over the week-end...
There are two ways to live your life
One is as though nothing is a miracle
The other is as though everything is a miracle.
- Albert Einstein-
Sunday, July 18, 2010
T-shirt update, Mary and Martha, etc...
It's 11:00 on Sunday night and I am not tired. All day I have been thinking about updating my blog and when I logged on and saw the last time I was out here was a month ago I realized that is a good thing. I don't have any new medical news to report. Last week I decreased my prednisone by another 10 mg so I am now on 20 mg until the doctor OK's another decrease. Someone at work shared with me a series of "anti-cancer diet" CD's. I've listened through the first four of them and there is some really good stuff in there. I'm blown away at a common thread that is shared by people faced with a something beyond your control...sometimes it changes life for the better. Of course I would rather not be keeping a blog about the ups and downs of myositis....but would I know this much about myself if I didn't? Never did I imagine having to call on my faith as I have in the passed four years. Without this situation in my life, would I have been able to see and feel the comfort and care and power of my God?
Back to the topic of food/diet: the anti-cancer diet and the anti-inflammatory diet and the coaching I received from Real Life Foods, and the time I spent with Kathleen at Slow Poke in Grafton are all very similar. Eat good, healthy foods, lots of fruits and vegetables, not as much meat and dairy. Drink green tea. Add curry, cinnamon, garlic, basil, rosemary and other healing herbs and spices into your meals (not at all at once, that would be bad). Stay away from processed foods. Refined sugars are bad. The challenge continues to be incorporating this into every day. Step one: be a better meal planner and grocery shopper. I'm going to "keep pedalling" in this direction and I will get there.
Speaking of steps, pedalling and getting there:
Tomorrow at work a new quarterly wellness challenge begins. This is a walking challenge and for the past couple of years I have chosen not to participate. We have had a variety of fitness and weight loss challenges at work and I have always felt that I would be letting whatever team I am on down....plus I was embarrassed at how little I could do physically. Over the past couple of months I have come to realize that my actions speak louder than my words. The greatest challenge was this summer. We joined a local pool and the thought of being in a swimsuit in public and running into a parent from school was a bit unnerving but I did it. Every time I take the kids to the pool I put my suit on. We swim and play in the water and I rest in the afternoon sun or the warmth of a summer evening if I need to. This is my body and although it's not the body I had five years ago, it's the body that wakes me up every morning. My eyes see the sunshine and the moonlight and the beautiful faces of my kids and loving husband. From the top of my head to the tip of my toes it's God's creation and it all works. That's what I want my kids to learn from my example. It's not about being the best, it's about being the best you.
Tomorrow I start walking. The end goal is 10,000 steps a day. The goal for tomorrow is to put on the pedometer and start.
T-shirt update: So far I have sold 30 t-shirts and have 38 people registered to walk on September 19th. I have sent letters to the Governor of Wisconsin and the Mayor of Milwaukee asking them to recognize September 21st as Myositis Awareness Day. Oh yeah...the Executive Director of the Myositis Association sent me an email last week and he is coming to my walk. I hope I can get some sort of media coverage for him.
Now to Mary and Martha....
The summer has been keeping us busy and many of our activities have us out of town on the week-ends. We've been to church but not to our church and I was so happy to be sitting at Our Savior Lutheran Church in Whitefish Bay this morning.
I hope the sermon gets out on the church website because I am certainly not going to do it justice but here are a few things I took away.
Back to the topic of food/diet: the anti-cancer diet and the anti-inflammatory diet and the coaching I received from Real Life Foods, and the time I spent with Kathleen at Slow Poke in Grafton are all very similar. Eat good, healthy foods, lots of fruits and vegetables, not as much meat and dairy. Drink green tea. Add curry, cinnamon, garlic, basil, rosemary and other healing herbs and spices into your meals (not at all at once, that would be bad). Stay away from processed foods. Refined sugars are bad. The challenge continues to be incorporating this into every day. Step one: be a better meal planner and grocery shopper. I'm going to "keep pedalling" in this direction and I will get there.
Speaking of steps, pedalling and getting there:
Tomorrow at work a new quarterly wellness challenge begins. This is a walking challenge and for the past couple of years I have chosen not to participate. We have had a variety of fitness and weight loss challenges at work and I have always felt that I would be letting whatever team I am on down....plus I was embarrassed at how little I could do physically. Over the past couple of months I have come to realize that my actions speak louder than my words. The greatest challenge was this summer. We joined a local pool and the thought of being in a swimsuit in public and running into a parent from school was a bit unnerving but I did it. Every time I take the kids to the pool I put my suit on. We swim and play in the water and I rest in the afternoon sun or the warmth of a summer evening if I need to. This is my body and although it's not the body I had five years ago, it's the body that wakes me up every morning. My eyes see the sunshine and the moonlight and the beautiful faces of my kids and loving husband. From the top of my head to the tip of my toes it's God's creation and it all works. That's what I want my kids to learn from my example. It's not about being the best, it's about being the best you.
Tomorrow I start walking. The end goal is 10,000 steps a day. The goal for tomorrow is to put on the pedometer and start.
T-shirt update: So far I have sold 30 t-shirts and have 38 people registered to walk on September 19th. I have sent letters to the Governor of Wisconsin and the Mayor of Milwaukee asking them to recognize September 21st as Myositis Awareness Day. Oh yeah...the Executive Director of the Myositis Association sent me an email last week and he is coming to my walk. I hope I can get some sort of media coverage for him.
Now to Mary and Martha....
The summer has been keeping us busy and many of our activities have us out of town on the week-ends. We've been to church but not to our church and I was so happy to be sitting at Our Savior Lutheran Church in Whitefish Bay this morning.
I hope the sermon gets out on the church website because I am certainly not going to do it justice but here are a few things I took away.
- Remember what is important
- Ask for what you need
- Trust God
Martha was so worried about making sure everything was done: was the house clean, the table set, the food made, etc....She was angry that these things didn't seem to matter to her sister who was just sitting around talking to their guest (Jesus). Martha let the stress of everything that "needed to be done" escalate and she blew up. Would the afternoon played out differently if Martha had first remembered what was really important and what if she had asked Mary to help her? In our house I am definitely Mary and Bill is definitely Martha. Don't get me wrong, we both know what things need to be done. We just approach them differently. I think that too is a blessing I received from this disease. I see "what's really important" different than Bill. In the same way, he looks at what needs to get done and doesn't stress about it. He just does it because it needs to get done. Have a mentioned lately how blessed and lucky that he is my husband and Emma and Jacob's dad. Well, Bill and I had a few laughs throughout the day and we recognized our different Mary and Martha tendencies. Stuck in traffic do you want to be Mary or Martha? With a day full of things you need to do and things you want to do what would Mary do, what would Martha do? Today we practice the traits of Mary as best as we could. It was great!
Trust God. No way am I going to do this part of the sermon justice. What I heard was when you don't have the answers, when life isn't going according to our plan, we need to let go and let God take care of us. Not an easy thing to do, but when you do it's amazing how wonderful it feels.
Good night my friends. Thank you for checking in. klb
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