I knew when I left for work this morning that I would be coming home to rest before the day was done. By noon I was headed home. This morning I left a message for Dr. Cohen letting her know that the low dose of prednisone did nothing to help my aches and fatigue. She called back this afternoon and instead of lining up the Rituxan, she told me we need to do some more tests to rule out it being anything else.
First, a test of my adrenal glands. It could be that they aren't working like they should be and that is causing the fatigue and aches.
If it's not that, then we will do a full chemistry panel and the doctors will make sure it's nothing else.
An EMG and EKG might also be ordered and maybe a muscle MRI which is a new technology that wasn't available three years ago. Not everything at once, the easy things first.
It is much like putting together a puzzle. Look at this piece, does it fit? Look at another piece....does it fit?
In the end the puzzle is completed but it takes patience and the right set of eyes.
Friday, June 3, 2011
Thursday, June 2, 2011
I don't remember....
I think of it often but don't take the time to get back to my blog and write what's going on with me.
The thing is, I don't remember what it feels like to feel great. June marks the 5 year anniversary of the results of the muscle biopsy. The scar in my thigh has faded, the disease has not. There are many days that I am sick and tired of being sick and tired. What would it be like to not have to push through a day? I go to the gym because I can. I go to work because I can. School functions and church functions because I can. Actually, there isn't much I can't do, but the price is fatigue. This has not gotten the best of me, but it has gotten me back to the doctor. Last week I decided I had had enough and there has to be something else we can try. I had a cold so the increased fatigue may be from that. My red blood cell count is low. Not low enough that it caused any alarms for my doctor accept now that the aches and fatigue have come on stronger I am being monitored more closely. The aching in my arms and hands is a daily thing now. The fatigue is....well, exhausting. I am back on a low dose of prednisone and she has prepared me for the fact that I might have to take it forever. She is hoping that will help me kick this thing but if it doesn't, she would like me to start a new medication called Rituxan. This is two infusions (they can take 2-5 hours), 15 days apart that could make me feel good for up to six months. When the Rituxan wears out, I can get another infusion. They use the drug primarily to treat people with Rheumatoid Arthritis but it has been effective in people with dermatomyosits as well. Last week I wasn't so sure I wanted to go this route, today it seems like it might be the right choice. Everything has side effects, all medications carry with them risks. My doctor has to disclose the risk but also feels that the positives would outweigh the negatives. I'll keep you posted on what I decide.
A few of you have asked if there will be a second annual Myositis walk and I know there will be. I just don't know if it will be the first or second Saturday of September. I do know it will be at Nicolet High School again and I am thinking of how to incorporate a running aspect into the event as well. The raffle was a last minute thing but it was raised a lot of money so if you know of any business owners or people who would want to donate gift cards or other items to that part of the event I would really appreciate it.
Take care my friends.
I don't take for granted each day I am given. I count my blessings instead of sheep. good night.
The thing is, I don't remember what it feels like to feel great. June marks the 5 year anniversary of the results of the muscle biopsy. The scar in my thigh has faded, the disease has not. There are many days that I am sick and tired of being sick and tired. What would it be like to not have to push through a day? I go to the gym because I can. I go to work because I can. School functions and church functions because I can. Actually, there isn't much I can't do, but the price is fatigue. This has not gotten the best of me, but it has gotten me back to the doctor. Last week I decided I had had enough and there has to be something else we can try. I had a cold so the increased fatigue may be from that. My red blood cell count is low. Not low enough that it caused any alarms for my doctor accept now that the aches and fatigue have come on stronger I am being monitored more closely. The aching in my arms and hands is a daily thing now. The fatigue is....well, exhausting. I am back on a low dose of prednisone and she has prepared me for the fact that I might have to take it forever. She is hoping that will help me kick this thing but if it doesn't, she would like me to start a new medication called Rituxan. This is two infusions (they can take 2-5 hours), 15 days apart that could make me feel good for up to six months. When the Rituxan wears out, I can get another infusion. They use the drug primarily to treat people with Rheumatoid Arthritis but it has been effective in people with dermatomyosits as well. Last week I wasn't so sure I wanted to go this route, today it seems like it might be the right choice. Everything has side effects, all medications carry with them risks. My doctor has to disclose the risk but also feels that the positives would outweigh the negatives. I'll keep you posted on what I decide.
A few of you have asked if there will be a second annual Myositis walk and I know there will be. I just don't know if it will be the first or second Saturday of September. I do know it will be at Nicolet High School again and I am thinking of how to incorporate a running aspect into the event as well. The raffle was a last minute thing but it was raised a lot of money so if you know of any business owners or people who would want to donate gift cards or other items to that part of the event I would really appreciate it.
Take care my friends.
I don't take for granted each day I am given. I count my blessings instead of sheep. good night.
Sunday, March 6, 2011
Isaiah 41:13
I can't believe that February came and went and I never logged on to tell you how I am doing. I did not go back on prednisone. I ordered proactiv instead and that seems to be working well on my skin issues. There were no significant changes in any of my lab results last month and my next appointment with Dr. Cohen is this week so we will see what is to come of this journey. I know that I have a medication change coming soon. The cytoxin that I have been taking is only a short term (6-18 month) medication and I believe it has done it's job as it relates to the interstial lung disease.
Even though February has come and gone, the bible verse I had was this:
"I am the Lord, your God, who takes hold of your right hand and says to you, 'Do Not Fear'" Isaiah 41:13.
Now to March..."Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12.
Rejoice in hope...I had always hoped that I would be able to return to work full time. I enjoy the work I do and the company I work for. My disease has pretty much been unchanged for a year now...so on February 28th I started back full time. I remember it was about a year ago when we were packing for our spring break trip to Florida that the doctor called and we had that terrible conversation about the seriousness of my lung condition. Either take the prednisone or let your lungs turn to scar tissue and die. I took the medicine. The inflammation went away. It all worked out. Here I am typing an update, rejoicing in hope for more improvements.
Be patient in tribulation...there is enough of that going around. Regardless of who you are, I would bet there is some tribulation in your life. It's part of life, right? It might be health, job, money, friendships, politics, money, addiction, whatever it is...
Be Constant in prayer. I'm praying, daily, sometimes multiple times a day. When you feel like there is nothing you can do to help someone or to change something, this is something you can do.
I will log in a doctor update later this week.
Thanks for checking in.
Kris
Even though February has come and gone, the bible verse I had was this:
"I am the Lord, your God, who takes hold of your right hand and says to you, 'Do Not Fear'" Isaiah 41:13.
Now to March..."Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12.
Rejoice in hope...I had always hoped that I would be able to return to work full time. I enjoy the work I do and the company I work for. My disease has pretty much been unchanged for a year now...so on February 28th I started back full time. I remember it was about a year ago when we were packing for our spring break trip to Florida that the doctor called and we had that terrible conversation about the seriousness of my lung condition. Either take the prednisone or let your lungs turn to scar tissue and die. I took the medicine. The inflammation went away. It all worked out. Here I am typing an update, rejoicing in hope for more improvements.
Be patient in tribulation...there is enough of that going around. Regardless of who you are, I would bet there is some tribulation in your life. It's part of life, right? It might be health, job, money, friendships, politics, money, addiction, whatever it is...
Be Constant in prayer. I'm praying, daily, sometimes multiple times a day. When you feel like there is nothing you can do to help someone or to change something, this is something you can do.
I will log in a doctor update later this week.
Thanks for checking in.
Kris
Monday, January 10, 2011
The appointment and more....
The appointment with Dr. Cohen was pretty good. My symptoms are improving. She still hears a bit of "Velcro" in my lungs and because of that is going to increase my cytoxin. Although I don't understand the reasoning behind this decision, it has something to do with getting my white blood cell counts to drop. They remain in the normal range and I guess they want to see them drop to maximize the effectiveness.
The other thing I have going for me (sarcasm) is this terrible rash/breakout on my face and my back. It's been on and off but yesterday and today it's awful. I wear a mineral makeup that has been pretty effective in reducing the redness but today I feel as if I could tear my back off (if only I could reach the really itchy spot) and my face looks and feels awful. I called Dr.Cohen to check and see if it could possibly be the switch from prednisone to hydrocortisone and although she doesn't think so, she did recommend I go back on the prednisone and schedule an appointment with a dermatologist. By now you all know how I feel about prednisone. I have only been off of it for 10 days. Give me a break! I don't want to take it so I am seeking a second opinion and going to see my internal medicine doctor this afternoon. You would think I could wait until Thursday to see a dermatologist but I don't know that doctor and they don't know me and I don't want to take prednisone. I know, I probably sound like an absolute pouty toddler, sorry about that. It just seems like if it isn't one thing it's another.
Did I tell you I have a mantra for the month of January?
It is a bible verse, Philippians 4:13: "I can do all things in Christ Jesus who strengthens me."
My sister Beth has this verse in multiple places and uses it to keep her going as it relates to exercise. I thought it would be a great way to kick off the new year with all the goals and resolutions that typically are committed to in January.
When I am heading for chocolate or not heading to the gym or at the gym swimming laps or walking on the treadmill ....this is the verse that I say to help me keep going or to help me stop depending on what the situation is.
I already have my verses/mantras picked out for February and March but you will have to check back then to find out what they are.
In the mean time, take care of you.....
Kris B
The other thing I have going for me (sarcasm) is this terrible rash/breakout on my face and my back. It's been on and off but yesterday and today it's awful. I wear a mineral makeup that has been pretty effective in reducing the redness but today I feel as if I could tear my back off (if only I could reach the really itchy spot) and my face looks and feels awful. I called Dr.Cohen to check and see if it could possibly be the switch from prednisone to hydrocortisone and although she doesn't think so, she did recommend I go back on the prednisone and schedule an appointment with a dermatologist. By now you all know how I feel about prednisone. I have only been off of it for 10 days. Give me a break! I don't want to take it so I am seeking a second opinion and going to see my internal medicine doctor this afternoon. You would think I could wait until Thursday to see a dermatologist but I don't know that doctor and they don't know me and I don't want to take prednisone. I know, I probably sound like an absolute pouty toddler, sorry about that. It just seems like if it isn't one thing it's another.
Did I tell you I have a mantra for the month of January?
It is a bible verse, Philippians 4:13: "I can do all things in Christ Jesus who strengthens me."
My sister Beth has this verse in multiple places and uses it to keep her going as it relates to exercise. I thought it would be a great way to kick off the new year with all the goals and resolutions that typically are committed to in January.
When I am heading for chocolate or not heading to the gym or at the gym swimming laps or walking on the treadmill ....this is the verse that I say to help me keep going or to help me stop depending on what the situation is.
I already have my verses/mantras picked out for February and March but you will have to check back then to find out what they are.
In the mean time, take care of you.....
Kris B
Sunday, January 2, 2011
Happy New Year
January 1st marks the first day in a VERY, VERY long time that I have not taken any prednisone. I moved from prednisone to hydrocortisone and will continue to taper down for there.
December our home was plagued with sick people. Emma fought pneumonia, both kids fought the flu, and Bill has cared for them and nursed them back to health while fighting with his own cough and cold. Just after Christmas I found myself fighting some of the same symptoms. It's important that when I am not feeling well that I stay really aware of whats going on. My lungs are compromised and even a small infection could quickly spiral out of control and cause more damage. For this reason I called my lung doctor and said "I have a cough, should I be concerned?" She said take some mucinex to loosen it up and head in for a chest xray. I thought this was a little much but I trust her so off I went to the hospital.
GREAT NEWS...my lungs look better than they did the last time. The cytoxin and the prednisone have done their job. So, the blessing of this cough and cold was getting xray and the call that my lungs are looking good! One less worry for the new year.
This week I see Dr Cohen (rheumatologist) and get my monthly lab work done. I will let you know how I am progressing after that appointment.
The posts are fewer and far between and although I miss writing, it means that I am feeling better and off doing other things.
God's blessings to you today and throughout the new year.
Kris B
December our home was plagued with sick people. Emma fought pneumonia, both kids fought the flu, and Bill has cared for them and nursed them back to health while fighting with his own cough and cold. Just after Christmas I found myself fighting some of the same symptoms. It's important that when I am not feeling well that I stay really aware of whats going on. My lungs are compromised and even a small infection could quickly spiral out of control and cause more damage. For this reason I called my lung doctor and said "I have a cough, should I be concerned?" She said take some mucinex to loosen it up and head in for a chest xray. I thought this was a little much but I trust her so off I went to the hospital.
GREAT NEWS...my lungs look better than they did the last time. The cytoxin and the prednisone have done their job. So, the blessing of this cough and cold was getting xray and the call that my lungs are looking good! One less worry for the new year.
This week I see Dr Cohen (rheumatologist) and get my monthly lab work done. I will let you know how I am progressing after that appointment.
The posts are fewer and far between and although I miss writing, it means that I am feeling better and off doing other things.
God's blessings to you today and throughout the new year.
Kris B
Wednesday, December 1, 2010
Not bad...
December 1st and for the next 30 days I will be down to 5mg of prednisone. After that I will transition to hydrocortisone which is more to help the adrenal glands than to treat the disease. It's nice that the weaning of prednisone has been successful. It's slow but remember that saying "slow and steady wins the race", I am counting on that in many aspects of this journey.
Work has been very busy. I had found a good balance between work and life between 25-27 hours a week. This past month it's been more frequently a 30 hour week and that takes it's toll on everyone. I just do not have anything left to give after a week like that and I spend my time at home recovering for the next day instead of doing the things I love doing. OK, many of these things I don't love doing but not being able to do them sheds new light on the task...dinner, laundry, dishes, helping with homework, walking the dog or going to the gym.
Should do them...yes
Want to do them...not really.
Can't do them because I am to wiped out...stinks!
Friday morning I go back for my monthly labs and the results of those tests will be the guide for whatever else is to come on the medical journey.
Here's a plug for CVS. We left for Chicago on Friday and half way there I realized although I had packed my pill boxes, I had not taken the time to refill them. I called the doctor to see if I could skip them for two and a half days and the answer was no. Our faithful GPS guided us to the nearest CVS to our hotel and within 20 minutes I had what I needed to get me through the weekend, no hoops to jump through, no questions asked. Everything I needed, everything they needed to meet my needs was right there in the computer. Yeah CVS.
Well, that's all for now. Thanks for checking in.
Please remember that as you prepare for the upcoming holiday season that it's not about being perfect...the perfect gift, the perfect wrapping paper, the perfect dinner or perfect decorations. What's perfect was the gift of Jesus. That's the only thing that's suppose to be perfect about Christmas. God planned it that way.
Did you just feel the weight come off your shoulders? I heard a similiar message a couple of years ago on Christmas eve and the since then the Christmas seasons have been more joy-filled.
Joyfully yours,
Kris B
Work has been very busy. I had found a good balance between work and life between 25-27 hours a week. This past month it's been more frequently a 30 hour week and that takes it's toll on everyone. I just do not have anything left to give after a week like that and I spend my time at home recovering for the next day instead of doing the things I love doing. OK, many of these things I don't love doing but not being able to do them sheds new light on the task...dinner, laundry, dishes, helping with homework, walking the dog or going to the gym.
Should do them...yes
Want to do them...not really.
Can't do them because I am to wiped out...stinks!
Friday morning I go back for my monthly labs and the results of those tests will be the guide for whatever else is to come on the medical journey.
Here's a plug for CVS. We left for Chicago on Friday and half way there I realized although I had packed my pill boxes, I had not taken the time to refill them. I called the doctor to see if I could skip them for two and a half days and the answer was no. Our faithful GPS guided us to the nearest CVS to our hotel and within 20 minutes I had what I needed to get me through the weekend, no hoops to jump through, no questions asked. Everything I needed, everything they needed to meet my needs was right there in the computer. Yeah CVS.
Well, that's all for now. Thanks for checking in.
Please remember that as you prepare for the upcoming holiday season that it's not about being perfect...the perfect gift, the perfect wrapping paper, the perfect dinner or perfect decorations. What's perfect was the gift of Jesus. That's the only thing that's suppose to be perfect about Christmas. God planned it that way.
Did you just feel the weight come off your shoulders? I heard a similiar message a couple of years ago on Christmas eve and the since then the Christmas seasons have been more joy-filled.
Joyfully yours,
Kris B
Thursday, October 21, 2010
CT Scan
I saw Dr. Adl yesterday and the results of the CT scan are good.
There's no inflammation. YEAH!
The tapering of the prednisone can continue very slowly. I am at 10mg right now and can't wait to report the day when I can do without.
My next doctor appointment is November 2nd and hopefully at that time we can formulate a plan for the other medicines.
I mentioned in one of my emails that I wasn't sure if I was believing in myself as it related to what I could accomplish physically so in September I committed to 150 minutes of exercise each week and I did it. In October I bumped that up to 160 minutes per week and so far I have also been able to keep up with that. I plan to continue adding 10 minutes a week each month for as long as I am able. It's slow but it's something and I feel good about it.
I ____because I can. Right now I am swimming, walking, riding the bike and just this week added some weights to that.
Thank you for checking in.
Quote for today - I saw a cartoon that says "I'm always losing my car keys, my temper, my memory and my patience...so losing weight should be a breeze!"
There's no inflammation. YEAH!
The tapering of the prednisone can continue very slowly. I am at 10mg right now and can't wait to report the day when I can do without.
My next doctor appointment is November 2nd and hopefully at that time we can formulate a plan for the other medicines.
I mentioned in one of my emails that I wasn't sure if I was believing in myself as it related to what I could accomplish physically so in September I committed to 150 minutes of exercise each week and I did it. In October I bumped that up to 160 minutes per week and so far I have also been able to keep up with that. I plan to continue adding 10 minutes a week each month for as long as I am able. It's slow but it's something and I feel good about it.
I ____because I can. Right now I am swimming, walking, riding the bike and just this week added some weights to that.
Thank you for checking in.
Quote for today - I saw a cartoon that says "I'm always losing my car keys, my temper, my memory and my patience...so losing weight should be a breeze!"
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