Still Believing...

Hello,
It's been a couple weeks and I have learned a couple of new things. Last week I worked 4 six hour days instead of 5 five hour days. I learned that consecutive six hour days is still too much. The first two days I was fine, the third day I felt myself wearing down, the fourth day...needless to say, it took me about four days to recover.
What does that mean?
I was able to do enough to get by and very little extra. On Tuesday, I had to stay home from work and rest.
I also learned that it really makes a difference what I put into my body. I haven't been consuming any artificial sweetners and very little caffenine for quite some time however, the other night I broke down and had a few CC and diet cokes with my husband. Now, it could have been the whiskey but I definitely believe the diet coke had something to do with how awful I felt for days to follow. I don't want to put anything in my body that is going to make me feel like crap and if I do, I have now learned moderation. Believe me, it will never be easy, I will always be practicing, but I know now something about how the amazing body works and what it needs and to be more kind to it.
Well....I have to buzz and get Jake from an after school program.
I will write again, sooner rather than later as there are more things that I have learned that I am looking forward to sharing with you.

Still Believing,
Kris B

A new year

We are ten days into the new year and ever since we rang in 2009 I have been thinking about catching up with you. Ever year for the past four or five years I have always spent considerable amount of time writing out my goals for the year ahead. I need a plan. I need goals.
This year however, I did not write out my goals. I simply made a statement to live by.
"I will chose to live a healthy life."
The greatest example so far are the wonderful walks I have been taking since we welcomed "Star" into our family on the Saturday following Christmas. She was a gift to Emma and Jake from Bill and I, however, we have all come to love her for very different reasons. I love my new walking partner. Who would of thought a K9 companion could be an exercise accountability partner?

This week, it was my fortunate luck to be watching Oprah when she talked about her struggles with weight. One particular statement she made was so powerful and personal for me....she said that she needs to love the body that she is in. She needs to remember that the body she currently has is the same body that continues to have a heart that beats and lungs that breathe and God's blessing her with these working organs and another day. All of this regardless of how she treats it. Regardless of the medications, regardless of what food she choses, regardless....her heart still beats, her lungs still breathe, now why in the world would anyone chose to give anything less to than the best to this amazing and loving body.
All of a sudden, "chosing to be healthy" just got a little easier.

Well, Star is seeking my attention so off I go...more on chosing to be healthy to follow in the days and weeks to come.
klb

Bob Mack and his Mom....

I received a comment to my blog today from Bob Mack. This quick note gave me the nudge I needed to get back to writing.

Bob, my doctor's name is Miriam Cohen and she is at the Rheumatic Disease Center in Glendale, WI (414-351-4009).
I don't want to put my personal contact information out here, but you can reach me by phone at PyraMax Bank in Greenfield. Also, please visit the myositis website for more information.

Last week when I had my last meeting wth Rachel, I told her that I had been thinking about changing the direction of my blog entries and I wasn't certain that people would be as interested in the everyday coping with a disease as they were with the ups and downs.
What else is there to share?
She reminded me that my blog really doesn't have to change...it is, and can remain about a woman, a wife...a mom...a daughter...a sister...a friend....
coping with day to day stuff that has to do with living with a disease but chosing to make the very best of it.

So here it goes...my last visit with Rachel was bitter sweet. I have come to rely on her as a confidante, a sounding board, a coach, a motivator and so much more. Really amazing considering we have never met face to face. The call ended with Rachel asking me how I had changed since we first started meeting. A few things I thought of...

• I am eating more spinach in any given month since we started than in all the years of my life combined
• I no longer consume nutrisweet or other artifical sweetners
• I realized I have a strong sugar (dessert) addiction and it has very little to do with trying to give myself a boost of energy when I am tired and everything to do with how sugar effects me mentally and physically
• I drink a lot more water. Real water, true H2O, not sparkling, mineral or tonic.
• I have a better plan for a healthy dinner for me and my family is reaping the benefits as well
• I haven't eaten a frozen entree since July even if it is the easiest and quickest solution

Now, these are all very big accomplishments for me and I was feeling really good and then Rachel said to me...."let me tell you what you wrote before our first meeting..." Now this is not word for word, but what I remember from what she read me

I said that the very biggest priority for me was to get my disease into remission/resting.

• I am no longer taking prednisone to control my disease, rather I am taking a lesser steroid called hydrocortisone and it's purpose is to help my adrenal glands cope with the change.

This next thing blew me away....I wrote that I hated myself. I hated my disease. I hated that when I had good days, enjoying activities with my children, family or friends that I was punished with more days of feeling bad.

• This nearly brought me to tears. I don't like the word "hate". I don't allow my children to use the word "hate", I don't use the word "hate" yet I repeated it multiple times in statement I provided just six months ago. Guess what...I can honestly say, six months later that I don't know who that woman was that said she "hated" herself. I don't.

Was the program a success? Yes.

Did I get everything out of it I had hope for? No.

I got different things, things I couldn't have imagined and didn't know to wish for.

Changing directions

The topic of my blog is about to change. Not too worry, occassionally I will provide updates regarding my dermatomysitis however, there haven't been any updates to report and I am missing the activity of writing about life in general.

Last Tuesday, I had my second to last coaching sessions with my food coach, Rachel. It's getting scary to think that by next Tuesday, I will have all the information and resources that I need to continue on this journey of healthy living. I've learned a lot, practiced a lot, made some changes and tried so many new things.
To begin I need to list my goals and desires. Why I am committed to this goal and to whom will I be accountable? Then I have to document the specific action steps I will take to get there.
Let me not forget gratitude. It will be important for me to keep track of those things that I am thankful for, that's the Vitamin J (joy) I referenced in my last blog.
So, that's the new format...feel free to jump in anytime to comment, hold me accountable, etc...
The journey continues.....

A few really hard days...

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

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.

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