Over the past two weeks I have had a few really hard days. I am guessing it's just my body adjusting to another change in prednisone but I also have a rash that I haven't had before. Today I decided to stop ignoring it and to call Dr. Cohen and report in. As you know, I have the type of myositis called dermatomyositis. Until now, I haven't had many skin issues. Many times individuals with dermatomyositis can get a rash and I believe I may have a "shawl rash". They call it this because it covers the same area a "shawl" would if you happen to have one wrapped around your shoulders. I've also been struggling with fatigue and moods. A good mood is a beautiful thing. A bad mood, a sad mood, and a frustrated mood are not. It is very hard for me to be anything but happy, at least on the outside. I know how many things I have to be thankful for. I know that there are many more people who's lives are presented with greater challenges but there are days, thankfully not many, when I say "why me". When I whine that I am sick of being sick and I want my old life back.
Writing is therapy...it's OK to have those feelings. It's even better when they don't take over days and weeks and months of your life.
The other day when I met with Rachel (my food coach), we talked about what we feed ourselves and she encouraged me to take a look at how much vitamin J I was getting. If 10% of my vitamin J comes from food, that's great. It means that 90% is coming from other things.
Vitamin J is joy.
I am making a list now of all the things that bring me joy and finding a way to fill up my days with it. It's just a start but the first thing I noticed was how neat it is to go for a walk for the purpose of joy.
Have a great day.
klb
Thursday, October 30, 2008
Monday, October 27, 2008
Good Heart
This morning I had a follow up appointment with Dr. Zwicke, cardiologist. Although the appointment took longer than I had expected (2 1/2 hours), the outcome was worth the wait. Dr. Zwicke doesn't feel it is necessary to schedule further appointments. My heart is working well and the last echocardiogram showed improvement from two years ago. She has no concerns but will keep my file and records in a pending status in case a concern would come up in the future. Yeah. A good heart, that makes me happy.
Wednesday, October 15, 2008
Hello friends
Hello friends,
I am sorry it has been so long since I last logged in to give you an update. I guess the primary reason is that I have nothing new to report. Everything is the same.
I am now (knock on wood) down to seven mg of prednisone and on Sunday I will move to six.
The things I have noticed with this change is a weird temperature change in my finger tips. Sometimes they are really hot, burning and other times they feel cold and other times they throb a lot. Like the throb that happens after slamming it in a door or with a hammer. Not that extreme, not that painful, just a throbbing and aching that isn't normal. I can live with it.
I still meet with my food coach every two weeks. I haven't been on a scale so I can't say if I have lost any weight, but I can definitely say that I am living a healthier life. I'm learning a lot about whole foods vs. processed foods and I am learning about some things that I can do to give me "balance" in my life. I certainly can't work on everything at once, but at least I am learning how to make small changes that will have a big impact in time (Thank you Rachel)
The newest thing I got from Rachel is an article on morning journaling. As you all know, I enjoy putting my thoughts into words but Rachel has encouraged me to do this in the morning, before getting out of bed....with paper and a pen, not a keyboard. "The pen is a primal tool, connecting your hand to your mind." I have to be realistic. This will not happen on the mornings that I get up and walk at 5:30. Rather I will do it as a mind exercise for the days that I walk midday or in the evenings.
Speaking of walking, I am starting to think about walking attire for the winter. What is the best thing to wear on your feet if you are walking outside in the slush, snow or ice? Do you wear walking shoes or do you wear boots? For those winter walkers or runners, let me know your thoughts.
I want to make every effort to stay outside versus mall walking, rejoining a gym or working out to a DVD/Video. It really is beautiful even when the stars are still out in the morning, crazy.
That's about all for now. Thanks for checking in and being patient with my delay in posting anything.
Kris B
I am sorry it has been so long since I last logged in to give you an update. I guess the primary reason is that I have nothing new to report. Everything is the same.
I am now (knock on wood) down to seven mg of prednisone and on Sunday I will move to six.
The things I have noticed with this change is a weird temperature change in my finger tips. Sometimes they are really hot, burning and other times they feel cold and other times they throb a lot. Like the throb that happens after slamming it in a door or with a hammer. Not that extreme, not that painful, just a throbbing and aching that isn't normal. I can live with it.
I still meet with my food coach every two weeks. I haven't been on a scale so I can't say if I have lost any weight, but I can definitely say that I am living a healthier life. I'm learning a lot about whole foods vs. processed foods and I am learning about some things that I can do to give me "balance" in my life. I certainly can't work on everything at once, but at least I am learning how to make small changes that will have a big impact in time (Thank you Rachel)
The newest thing I got from Rachel is an article on morning journaling. As you all know, I enjoy putting my thoughts into words but Rachel has encouraged me to do this in the morning, before getting out of bed....with paper and a pen, not a keyboard. "The pen is a primal tool, connecting your hand to your mind." I have to be realistic. This will not happen on the mornings that I get up and walk at 5:30. Rather I will do it as a mind exercise for the days that I walk midday or in the evenings.
Speaking of walking, I am starting to think about walking attire for the winter. What is the best thing to wear on your feet if you are walking outside in the slush, snow or ice? Do you wear walking shoes or do you wear boots? For those winter walkers or runners, let me know your thoughts.
I want to make every effort to stay outside versus mall walking, rejoining a gym or working out to a DVD/Video. It really is beautiful even when the stars are still out in the morning, crazy.
That's about all for now. Thanks for checking in and being patient with my delay in posting anything.
Kris B
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