Kris Lane

November = Thanksgiving

2011-10-31T21:00:00.000-07:00

At work we have an awesome wellness program. We are encouraged to participate in wellness campaigns throughout the year that revolve around healthy living. Exercise, what we eat, and the month of November is all about thanksgiving. Not the holiday, but being thankful and grateful. You know, the funny thing is I never can figure out the right spelling for grateful. Is it grateful or greatfull? I really do know the answer, but I wonder why it isn't the second one?
Being grateful is about appreciating what is great, right? Full of gratitude.....ahhhh there is the answer, grat(itude)/grat(eful).
The goal for this months wellness campaign is to keep a gratitude journal. I love this idea and I decided to start one for our house. This is community journal that can be used by me, by Bill, Emma and Jacob but also by family and friends who visit.

The first page of the journal says this:
This journal is for all of us. Spending a few moments each day reflecting on what is good, what is right, what brings joy to our life is so important. My hope is that together we create a book of memories and moments to share with family and friends for many years to come.

Page two:
Not a day goes by that I am not thankful for the love of my husband. From a moment and a song, a friendship bloomed and grew into a love, that started a marriage and a family, two beautiful children and a life together that is still growing....the best is yet to come.

Do not worry about tomorrow: God is already there.

I hope that when you visit our house you pick up the journal, take a look and even add a few words of your own.

I am grateful for you!

Just one very small part...

2011-10-26T19:13:00.000-07:00

Today after work I went to a funeral for a coworker and it got me to thinking that myositis is really such a very small part of who I am. It's an adjective but just one of many ways to describe me and I think it's time for it to take a back seat. There are so many other ways I would like someone to think of me.
Here's what I learned from my coworker...she was sick but it wasn't who she was. She came into work, she did her job and she did it very well. She was brave. She was courageous. She was lovely in the face of a great challenge. When I think of her, I do not think of the condition of her health, it's all those other great words. It is not cancer.
Do my actions reflect the woman I want to be? Am I a strong role model for my kids? What are they learning from me? Are they learning how to be a compassionate sibling? Are they learning to love unconditionally? Are they learning to believe without seeing?

Faith...Hope....Love!

Not a smooth transition but I don't want to start a whole new entry...
I am working on a letter regarding the myositis walk that was held over Labor Day weekend at Nicolet High School. It will be mailed to all participants, donors, etc....I do feel terrible for the delay and it certainly is not a reflection of a lack of appreciation. It's hard to put into words what that day meant for me, but again, it just a very small part....one day in the life of a woman blessed over and over again.

This week...

2011-08-02T16:25:00.000-07:00

This week I see my rheumatologist (Thursday morning) and the timing couldn't be better. I have missed some work over the past few weeks due to fatigue and I absolutely have a really hard time with that. I know I can work full time but I also need to rest when my body tells me to. If that is a few times every couple of months, that's better than not working, right? I love what I do and I don't ever want anyone (my boss, my kids, my husband, my family, my friends) to feel like they are getting the short end of stick. I guess it is what I make of it. It is what it is, or it's the "story" I make of it. I am hoping and praying that she will want to try a new form of treatment called Rituxim. Although it carries with it no guarantees, many people with Myositis have found relief that lasted months, not just days or weeks.

I was glad I went and look at my last few posts because one recently was me getting mad about being tired and sore and I was just going to do what I wanted to do even if it meant cashing in the energy chips. This past weekend I did just that. I played with my kids, I went for walks, I swam... all in the beauty of the northwoods. No phones, no computers, no clocks (well, there were actually clocks but none of them had the right time on them). Monday I tried to go to work. I made it four hours and went home and rested the next 16 hours. This morning was still hard but I made it through the work day and tomorrow will be better.

The other thing I am working on is the 2nd Myositis Awareness Walk/Fundraising. Last year I had 75 people walk , we raised about $3500 and walked 146 miles together. This year I hope to double those results. More details will follow but for now
.....please mark your calendars for Saturday, September 3rd from 10-12 at Nicolet High School in Glendale, WI.
If you have anything you would like to donate to the raffle please let me know.
I hope you can make it.

Kris

Really....there's no more room!

2011-06-27T15:48:00.000-07:00

The results from the thyroid test came back normal so I won't be adding any medication for that however, my estrogen levels are low (probably because of the series of drugs I have taken) and the solution for that, another doctor appointment. This time to see my ob/gyn and probably estrogen replacement therapy (more meds) And medication to delay osteoporosis and Vitamin D3 and the medication I want to take because it has helped other people who actually have myositis I can't take, at least not now. We will look at that option again when I see my rheumatologist on August 4th. Really, there is no more room in my pillbox. Really, I am only 42 years old and I feel like I am 84.

So, my solution...I am getting mad and I am getting even. I am not going to sit around and feel like crap so I got home from work, put my tennis shoes on and went for a walk with Jacob and Star. If I am going to ache and I am going to be exhausted, I am going to do the stuff I love to do. I am not going to stop fighting to feel better. Trying to stay positive. Today is hard but tomorrow is another day.

On a side note, I was just looking at our family calendar and it is crazy busy so I decided I better put a date on the calendar for the 2nd WI Myositis Walk. Please pencil in Saturday, September 3rd (this is super tentative because another Myositis Member is helping me and we haven't been able to connect). I know it's Labor Day weekend but I am hoping if we can do it right away on Saturday morning (like 9-11) it won't take away from your other plans for the long weekend.

First things first

2011-06-24T16:47:00.000-07:00

Today I saw an endocrinologist and she said I have secondary adrenal insufficiency caused by years of taking steroids. The treatment is 5 mg of prednisone forever. I also learned that if I ever get sick with a cold or infection I need to double the dose until I feel better. If I ever get the flu, and am throwing up or can't keep anything in, I have to go immediately to the ER and get a stress dose of hydrocortisone.

In addition to that update, she ran more lab work and question why I ever stopped taking the medication for hypothyroidism. Not sure, just had a doctor tell me I didn't need it anymore so I stopped. Hypothyroidism doesn't go away. She suspects that the tests will come back and I will need to start medication for that too. This might be the cause of the fatigue. If the new meds don't help, then she thinks we can look at moving to the rituxen for my myositis. She also recommended that I start a low carb diet as I am predisposed to diabetes and bone density issues because of all the medications I have been taking over the years.

With all that being said, wouldn't it be nice if the change to my diet helped me lose the weight I have been trying to shed over the past 5 years. Wouldn't it be cool if it was just my thyroid that is causing fatigue and muscle aches?

I'm good. Taking each day as it comes and being thankful for my friends, my family, the blessing of being a mom, a wife, a sister and a daughter.

Have a great weekend.

When I know more, I will post again.

Thanks.

Kris

PS - Phillipians 4:13 is now hanging on a chain around my neck. It's a great reminder as I start each day.

I can do all things through Christ who strengthens me.

Not as easy as a phone call

2011-06-03T13:23:00.001-07:00

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.

I don't remember....

2011-06-02T18:56:00.000-07:00

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.

Isaiah 41:13

2011-03-06T08:04:00.000-08:00

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

The appointment and more....

2011-01-10T11:04:00.000-08:00

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

Happy New Year

2011-01-02T09:57:00.000-08:00

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

Not bad...

2010-12-01T16:04:00.000-08:00

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

CT Scan

2010-10-21T13:55:00.000-07:00

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!"

What was it like in St. Louis...

2010-10-13T12:58:00.000-07:00

First and foremost it was great to be there with my mom and dad and three sisters. We always have a wonderful time when spouses and kids are along but just dad and his girls was a little like the old days. Although anyone of them would have been more than happy to come with me to the conference, it was really something I wanted to do on my own. They toured and texted me regarding their whereabouts and we met at the end of the day and enjoyed some great food, music and time together.

I have mixed feelings about the conference. There were about 300 people that attended (this included care-givers as well as those with one of the four types of myositis). The first meeting was a getting to know you session separated by disease type. It was amazing to be in a room with at least 30 other people with dermatomyositis.
The good: I'm 'normal' in the world of those effected by dermatomyositis. The majority have not gone into remission. The majority are trying to find the winning combination of pharmaceuticals to keep them moving along. The majority are not able to work full time and struggle with fatigue and muscle weakness. The majority have found a level of acceptance that life has changed and this is the new 'normal'.
The bad: It was hard to see that some needed to use a cane to get around and others a scooter or wheelchair. It was had to hear that many have not gone into remission. It was hard to hear that there is not a medication that works for everyone. It was hard to hear that many are not able to work full time and struggle with fatigue and muscle weakness.
Get it?
I guess it just depends if you are the person who sees the skies to be partly sunny or partly cloudy, the glass half empty or half full....

I promised to tell you about "I'm winning"
Here you go...
I'd like to repeat Mike's whole speech but I wouldn't do him justice and based on what I heard, someday you may have an opportunity to hear him yourself. He could have a career in motivational speaking in front of him.

He's a wrestling coach taking his team to a new level and during the process was diagnosed with polymyositis. Before his diagnosis he signed his emails and letters with the following closing "in relentless pursuit" and he shared that it means more today than it did when he first started using it. That was a lightbulb moment for me. I remember when I got my bee tattoo and what it meant to me then. Although I like my tattoo and I got it as a reminder of what I could accomplished because I believed in myself. The lightbulb was a question...Have I stopped believing in myself? Have I stopped believing in what I can accomplish physically? I'm revisiting that and will keep you posted.

Other important things that Mike said...

The disease is not the forefront of who he is. I like that.
When someone says to Mike "You look great" he replies "thank you, I appreciate that."
When someone asked Mike how it feels to have myositis he compares it to a terrible case of the flu. Think about it....how do you feel? You ache, you're tired, wiped out. You feel lousy but you don't want it to get the best of you. That's how it feels. It's a great description!
Want motivation? Look for it in those around you.
Daily affirmation...."am I being the person my spouse fell in love with?"
Courage is earned. It's a personal decision you have to make.

Finally, Mike wakes up every morning, puts his feet on the ground and says "Today I will be winning. I'm going to live the life I want." When someone asks Mike how he's doing or how he's feeling he replies...."I'm winning."

Thanks for checking in. Update on my fundraising efforts will be the next post.

Dr update

2010-10-01T11:58:00.000-07:00

I saw the doctor this week and shared with her that fatigue is increasing along with some muscle aches and weakness. There are a few things that could cause this.
First, the drug I was taking before I had a lung issue was working very well on my muscles but it was not a lung drug therefore when I had to start taking the lung drug the other drug had to be stopped. It could be that all the goodness of the old drug has finally left my body and now I am having muscle issues again.
Second, it could be that I need to taper the prednisone at a slower pace. Tapering too quickly can cause adrenal suppression and show up as fatigue and muscle stuff.
She called this morning and the labs look good so she thinks it might be the prednisone. I guess if I had to pick the best of the bad, that's the one I would have picked. It means I have to go back up on the prednisone and come back down much more slowly. Back up to 15 for a couple of days and then down to 12.5 for two weeks and then we will try 10 again and see how I do.
I will stop in and post more over the weekend.
Right now I am going to rest for a bit before Jacob gets home from school.
I can't wait to tell you about "I'm winning today."
Kris

Too long, too much....

2010-09-28T14:10:00.000-07:00

It's been too long since I posted a message and now I am overwhelmed with too much to report.
I'm going to have to take this in little pieces I think. In the days and weeks to come I will share with you information from the Myositis Walk and Myositis Awareness Day, the trip to St. Louis and the National Myositis Conference (this will surely be a number of posts as there is so much to share about the experience), an update from the doctor (going tomorrow morning), etc...

Right now I wanted to share with you that the reduction in prednisone is not going smoothly. I tapered down to 10 mg on Thursday and it's either that or the laps around the track last Sunday or the significant change in my routine over the weekend or a combination of all of these things that is knocking me over. As I am typing I notice the burning/aching in the muscles in my arms and neck. I have had to nap nearly every day for the past week. I am hoping to find the strength and patience to stick with the tapering schedule. OK...going to rest for 20-30 minutes and then will start dinner.
I will be back sooner rather than later.
Kris

One month down

2010-09-11T05:44:00.000-07:00

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.

Day 2

2010-08-18T10:10:00.000-07:00

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

60 + and other information...

2010-08-10T08:24:00.000-07:00

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

Psalm 46:10

2010-08-07T16:15:00.000-07:00

"Be still and know that I am God"

Be still and know that I am

Be still and know

Be still

Slight, modest is better than...

2010-07-29T05:38:00.000-07:00

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."

Status update

2010-07-26T15:17:00.000-07:00

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-

T-shirt update, Mary and Martha, etc...

2010-07-18T20:54:00.000-07:00

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.

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

First t-shirts sold...

2010-06-22T06:22:00.000-07:00

I received my first t-shirt order form and walk form. I will keep you update as they come in. It's exciting.

4 t-shirts
4 walkers

Yeah!

another medical update....

2010-06-16T22:18:00.000-07:00

Today I had three appointments related to my health.
First Appointment:
Three times each week I meet with Pulmonary Therapist for an hour and a half. During this time I walk on a treadmill, use a "Cat's Eye" machine for my arms, a sitting eliptical machine, a stationary bike and hand weights. Midway through each activity my oxygen levels are recorded as well as my breathing rate monitored. I am doing great.
The other day I was walking on a treadmill next to Margarite. She also has Interstitial Lung Disease. She is older than I am. She is on a lung transplant list and everytime her cellphone rings I wonder if I am going to be there when she gets the call that it's her turn. Margarite can't eat much. She is losing weight. It takes her a long time to chew her food because it take up a lot of oxygen to do that and with the goal of getting new lungs, this is working against her.
I am gaining weight. I'm not happy about it but walking on the treadmill next to Margarite makes me realize that we all have our obstacles to deal with. We want what the other has, but only if we can pick and chose.
We can't pick and chose! We get the cards and we get to play them. That's life.

My next appointment was with my Dr. Adl, my lung specialist. I received a call earlier this week that after talking with Dr. Cohen (my rheumatologist) that she wanted to see me. Dr. Cohen is worried that my treatment with prednisone is too long and maybe we should try another treatment. After meeting with Dr. Adl, I was assured that "clinically evaluation" would indiciate that there is improvement in the sound of my lungs. Only the Pulmonary Function Test or CT Scan can offer proof of this and that is scheduled for July 26th. Dr. Adl did offer great words of encouragement and told me that she is really impressed with her interactions with Dr.Cohen. I have decided to still hire a "Captain of my ship" and have made proactive calls to an internal medicine doctor to fill this role.

Third appointment was at "Slow Poke" in Grafton. Here I met with a woman who works with people to help create a balance in health through nutrition. I learned a lot, bought a few new things and hope that I can make smarter choices for fueling my body and get my family on the right track for the future. This will be a slow process but one well worth it.

I have to go to bed. It's 12:45 and I want to be working by 7:30AM.
Good night my friends.
Kris B

A myositis update...

2010-06-07T16:49:00.000-07:00

Today you get a myositis update because I saw Dr. Cohen.
First...I started with cough on Friday morning. It didn't really concern me because Bill has had a cough for about a week and Jacob has been coughing on and off as well. Saturday and Sunday coughing a little more but again this has been common in our household the past week or so.
Last night and this morning it become a bit worrisome. I coughed most of the night and this morning when I got up and got in the shower I coughed harder than I have probably ever coughed in my life. I remember what I had learned in my pulmonary therapy. Sit with your feet on the floor and your back against the back of a chair. Roll your head forward, relax your shoulders and keep your knees rollled outward. Rest your arms and hands on your thighs, with your palms facing up or rest your hands on your stomach. You can also pull a chair close to a table. Sit on the chair with your feet on the floor and place a pillow on the table. Fold and rest your arms on the pillow, then lay your head on your arms.
Obviously at 5:45 this morning in the shower I did not have the book in front of me to reference so I just did what I thought I remembered and sat on the floor of the shower and put my head on my knees and tried to stay calm. Eventually I stopped coughing. This morning event scared me enough to pull out the reference guide I had received and as I reviewed the information I decided that I should call the doctor. Under the section "When to call the doctor" I had experienced four of the twelve bullet points.
By noon I had an inhaler which I questioned. My lung issue is "restrictive" versus "obstructive" so it was my understanding that an inhaler wouldn't do me any good. I was correct and complimented on my questioning of this approach. The doctor thinks that I may be experiencing bronchial spasms when I start coughing and the one puff, twice a day for two weeks might help me out.
In addition I need to treat the GIRD (reflux- which I still don't think I have because I don't have heartburn). No eating two hours before bed. Caffenine and alcohol in moderation. Take my medicine a half hour before eating breakfast and dinner (still I remember the morning pill and continue to forget the one before dinner). I think I will set an alarm on my cell phone.

OK...now that wasn't even the doctor's appointment I was going to tell you about.
Dr. Cohen's exam showed that the prednisone is helping some of the skin issues (mechanics hands, purple-ing around my eyes, etc..) and any sort of joint issue or pain but she is very concerned that I am still on 30 mg and not decreasing until the third week of July. She said that rheumatologists and pulmonagolist approach this differently. She is going to be in contact with Dr. Adl and discuss the change of treatment to cyclosporine (I think that's the name) versus prednisone. She would also like to see some tests done now at the half way mark...repeat Pulmonary Function Test and/or CT Scan to see if the prednisone is making any improvement on the inflammation. If it's not, it's time to do something else.
So...side effects of the new medicine include low white blood cell count which increases the chance for infection, thinning hair, nausea, kidney or liver disease, increase chances of lymphomas and bladder infection and cancer, to name a few.... You know with every medication they say that the doctor believes the reward is greater than the risk associated with the prescription. How does that make you feel?
I had lab work done. She ordered some new tests that will take a little longer to get the results.
When she has them and has had a chance to review them with Dr. Adl she will call me. I will then fill you in on the plan of action.
It certainly could have been a better day at the doctor...but it also could have been worse.
Let me end this with a great little story I got from my sister Vicki last night....it's called "God's Cake" and as many of you know I have cake creator in my house so I plan on thinking of this story ever time I smell a cake baking or have a giant bowl of frosting on the counter or an amazing cake creation sitting on my kitchen counter.

Well that's a bummer...I can't just copy and paste.
I will post "God's Cake" for you tomorrow as it is time to get the kitchen picked up and the kids up to bed. No more eating for me as I plan to be sleeping in the next two hours.
Thanks for checking in.
Kris

Eat, Drink and Be Mindful...

2010-06-06T10:40:00.001-07:00

Eat, Drink and Be Mindful....I'm going to try it out.
Right now that means I am not going to eat the ice cream sandwich that is calling my name.
Instead I am going to get my stuff together and take Emma and Alexandra to the pool.
The ice cream sandwich will be there if I still want it when we get home.

Just like that....

2010-06-03T17:21:00.000-07:00

Just like that...with tears in my eyes I put my last post out there.

Then I went to my sister's new blog and look what wisdom/words I found there.

Her i-pod is engraved on the back.
It says " I can do all things through Christ who strengthens me".

Check...

Words to today's favorite running song: "Cause there may be times when you think you lost your mind and the steps you're taking leave you three, four steps behind. But the road you're walking might be long sometimes, you just keep on stepping and you will be just fine."

Check...

I'm not crying anymore.
Feeling a little better...
Thanks Roo.

It's been rough...

2010-06-03T16:59:00.001-07:00

The past few days have been rough. Beginning Saturday I started having increase fatigue and achiness in my arms, neck and back. Where did it come from, that is the question?
Could it have started from adding a second set of repetitions on Friday afternoon during my pulmonary therapy?
Could it be because I have not been sleeping well?
Could it be from the trip to Baraboo and back? I'm not usually the driver and round trip that was four hours?
It's been rough. In addition to the increase in aches and pain and problematic sleeping or not sleeping, I have been crabby, snapping at everything and everyone. OK, not everyone, just those I love the most and sleep under the same roof with. Just those three people that mean more to me than anything else in this world. Why am I hurting them with my terrible mood?
Could it be the prednisone?
Could it be because I am losing my battle with sweets and food in general?
It is as if bad is attracting bad and the more bad there is the harder it is to escape from it.
I know this too shall pass. I just wish I knew when.
Dear God...please help me see my cup overflowing. Help me say yes to the ones I love and the things that make me happy. Help me say no to the things that can be handled by others.
Help me get through these days and these tears stronger for it.

This is my life on prednisone...up and down. Crabby and stressed and tired and tearful and angry and eating even though I am not hungry. I am sick. It will get better.

Blueberry and Pecan

2010-05-29T14:46:00.000-07:00

The pies looked so good at the Log Cabin Restaurant today I couldn't decide so a call to Bill confirmed that I should buy 2, one blueberry, one pecan.

Our first in-person KIT meeting was great. It was so nice to put a name with a face and meet these wonderful people. Baraboo was a great place to meet. It was a perfect day for a drive and because I chose to "fly solo" I blasted the radio with my favorite CD's.

First Shania Twain "Come on Over" ...so many songs written for me to sing to Bill and sing I did.
Second was the compilation CD from my sister, Beth's wedding....great fun.
Third was Paul Simon's Rhythm of the Saints...wonderful drums and a great rhythms...

Kid Rock, David Gray, Talking Heads were played on the way home.

What a great day!

A little nervous...

2010-05-28T05:52:00.000-07:00

Tomorrow I hopping in the car and heading to Baraboo, WI to meet up with a group of individuals from around the state who share with me a myositis diagnosis. I'm a little nervous. It has taken years for me to get comfortable with this. It's a process.
I remember when I was first diagnosed I went out to the internet and found the myositis website. There is an on-line support group/message board where you can ask questions, tell stories, share your struggles, etc...I visited. I asked questions. I decided it wasn't for me. I wasn't going to let the experiences of others be mine. I was going to take this as it came and process it and deal with it my way.
Time passed and I realized that although I never felt alone, it's definitely hard to explain muscle fatigue to someone who doesn't have a muscle disease. It's hard to process and talk about what I could do and what I can't do anymore without sounding like I'm complaining. It's hard to know how to respond when someone asks "how are you doing? or how are you feeling?" How much do they want to know or should I just say...I'm doing great. It's hard to accept that medication will be how I start and end each day, probably for the rest of my life. This is something that I expect this group of people will understand only too well.
What I am really hoping for is that they have found the blessings of each day intertwined with the challenges we all face. I hope it will be a positive experience for all of us. If nothing else, The Log Cabin restaurant in Baraboo says they have great pie and I have a couple of picnics to go to this weekend so I'll be bringing a few home. Bill loves pie!
Have a safe, fun memorial day week-end. Take a moment to thank a soldier.

What a compliment...

2010-05-27T19:37:00.000-07:00

Just wanted to share with you a new blogger address. My sister Beth started a blog to journey/journal her efforts to prepare for a summer triathlon. She loves to take pictures and hopes to photograph her way through this.
I hope she finds as much joy and strength and courage and faith as I do through writing.
We all have something to give and it is through the act of giving we receive our own greatest gifts...my cup overflows!

http://roo-trytotri.blogspot.com

Be thankful...continued

2010-05-24T09:33:00.001-07:00

"Be thankful when you are tired and weary, because it means you've made a difference.

It's easy to be thankful for the good things. A life of rich fulfillment comes to those who are also thankful for the setbacks. Gratitude can turn a negative into a positive. Find a way to be thankful for your troubles, and they can become your blessings."

Author unknown (which is too bad because he or should should receive kudos for this)

A spark of energy and a reminder...

2010-05-20T14:57:00.000-07:00

I have been blessed with a spark of energy and a reminder that this journey is so much more than me. I have always known that God picked me for a very important reason...that I still do not know the answer to, but I am using this spark of energy to jump back in and raise awareness of this very rare disease.
Today I worked with my sister-in-law, Meg on a t-shirt design. I LOVE IT and hope you do too. I am strongly considering organizing a Myositis Walk. I drafted two letters, one to the Governor and one to the Mayor asking that they recognize September 21st as National Myositis Awareness Day. I asked a company if they would be interested in being a sponsor for the walk mentioned above. I have organized a meeting for members of the WI KIT group (people in Wisconsin who have myositis) to meet on Saturday, May 29th in Baraboo, WI for lunch. So far I have people coming from Eau Claire, Milwaukee and Wausau. I hope more decide to join us.
This is about bringing people together, raising awareness and helping others.

Be thankful

2010-05-18T11:02:00.000-07:00

"Be thankful for your mistakes, they will teach you valuable lessons. Be thankful when you're tired and weary, because it means you've made a difference."

Still feeling yucky...

2010-05-13T08:09:00.000-07:00

I am still not feeling great but I now believe that it is just a bug. My three sisters, one brother-in-law, mom and dad have the same queasy feeling in their stomachs this week. I am hoping to keep it to myself in my home and away from Bill, Emma and Jake.

Therapy is going well. I have the breathing technique down, inhale one, exhale four, inhale one, exhale four, etc....and I have noticed it works. I am much less short of breath when walking up the stairs if I remember to use the technique.

That's it for now.
It's a gloomy rainy day but there is sun in our near future.

klb

Be Thankful....

2010-05-13T08:08:00.001-07:00

"Be thankful for each new challenge, because it will build your strength and character."

Pulmonary Rehabilitation continues

2010-05-11T08:33:00.000-07:00

It's a new week and on Monday I went back to Endeavor for another session. I have gained four pounds since I started which really bothers me. They, of course, say it's the prednisone. I know it's the prednisone but that doesn't make it any easier. In addition to weight gain there is a side effect called "moonface". I see that happening as well. It's hard but I need to go back to the post about a number being just a number and be OK with it. It certainly beats the alternative.

Today I feel lousy. I am not sure if it's because of another night of not sleeping well but I have a nauseous stomach which makes eating a challenge, which makes taking my medicine difficult, which circles back to the nauseous stomach...
I am home from work today... working in conjunction with resting. It seems to be the best way to get things done today.

That's the update. I feel a lot better when I have something positive to write. It's early in the day though....I may be back with something good yet.

Be Thankful...

2010-05-05T06:21:00.001-07:00

Be thankful for your limitations, because they give you opportunities for improvement.

PR (pulmonary rehabilitation) day two

2010-05-04T19:20:00.001-07:00

Today I went back to Endeavor Therapy for my second of many visits to come. Here are some questions I have yet to get answers to and some answers to questions I had.

1) Is there scarring? I need to ask Dr. Adl
2) How is scarring measured versus inflammation? I need to ask Dr. Adl
3) Is Interstitial Lung Disease a Chronic Lung Disease? No. It is it's own entity, sometimes referred to as Fibrosis.

We reviewed the results of the pulmonary function test I had in November 2007 against the test I had in February 2010. There is about a 30% decrease in my overall lung function.

4) Is the goal to improve that number or stop/slow the progression? The goal is to stop or slow the progression. We may not see improvements.

I learned some new things too.

For example: I take a drug called OMEPRAZOLE DR...basically it is like prevacid or prilosec but a prescription versus over the counter. The bottle says take 1 capsule by mouth twice a day. I take a lot of medication and basically I take them twice a day. Once in the morning after I eat breakfast and again at night after dinner/before bed.
Well....that's not how to take this prescription. I need to take it 30 minutes before I eat breakfast and 30 minutes before I eat dinner. Honestly, I do not have symptoms of acid reflux or heartburn so I don't feel the positive effects of the drug. I take the drug because my lungs are already compromised and this is a proactive/preventative measure being taken to minimize other risk factors. Now I know and I need to figure out how to remember that one of the pills in my pill box needs to go down before all the others do. I forgot already tonight and Jake offered the following suggestion: "why not put one of those notes that stick places on the microwave or the stove or refrigerator or something like that so when you make dinner you remember?" So simple, so smart, so lucky to have kids to keep me sane.

Near the end of my visit today I had a chance to get on the treadmill. She started me at 1.0mph for 5 minutes. I thought I was going to die. Come on! Can we go at least to 3, 2.5 even....I don't have time to walk this slow. I did, I walked SLOW.
I hated it but the point is she is teaching me new breathing techniques. I need to take one quick breathe in through my nose and breathe out three breathes with "pursed lips". I don't think that's my rhythm but I stuck with her. In my running days I would breathe a rhythm of IN1-2-3, OUT1-2-3, IN1-2-3, OUT1-2-3,..I guess I have always been fond of dancing and the 123 works as good with a waltz as it does with a polka.

There are two kinds of breathing issues, obstructive and restrictive. I have restrictive issues. This means I do not have COPD or the types of diseases such as asthma, emphysema, bronchitis, etc...those diseases all have blockage or inflammation in the airways of the lungs or getting the oxygen out. My disease is restrictive meaning it's in the meat/muscle of my lungs and the challenge is in getting the oxygen in. I have a lot of work to do but I asked again today if a goal of running a mile with my daughter or walking three miles in 45 minutes was reasonable and although she didn't say "yes", she didn't say "no".

I have a homework assignment to read a guide called "To Air is Human". I just opened to page 71 and this might work for me.
"Household Fumes - Avoid strong fumes from cleaning products...."
"Dust - Dust raising jobs in your house or yard can make it harder for you to breathe...."
OK, I will be honest, it goes on to say how to accomplish those tasks and it doesn't say ask your husband or children....oh well. I didn't want to anyway.

Tomorrow I go back again. 1:30-2:45.

I'll keep you posted.
Thanks for checking in.
Kris

Pulmonary Rehabilitation

2010-05-01T11:52:00.001-07:00

On Thursday I had my first appointment at Endeavor Therapy. Over two and a half hours I met with a physical therapist and a respiratory therapist. They helped me understand what they could do to help and what the program would cover. I will meet with them for 1-2 hours two or three times a week for a 12 week period. They will help me understand my lungs and my lung disease and how I can make the most of what I have. Which by the is still pretty good. I know this because they monitored my oxygen levels and my heart rate during a six minute walk and it stayed very consistant.
What are my goals?

There are things I can control and things beyond my control. I want to know what I can do and then I want to do it. I want to continue to incorporate physical family activities into our life. Biking, walking, running, swimming, hiking, etc....
I don't want to live my life in neutral, stopped by the worry or concern of doing too much and how it will effect me
I do not want to gain anymore weight with this round of prednisone
I would love to be able to run a mile with Emma
I want to learn about my lungs and this aspect of the disease. Not what it means generically, but what it will mean specifically to me. Can it go away? Can it improve? Can we stop it from progressing?

That's where we will start.

Thanks for checking in.

Kris

Be Thankful....

2010-04-29T06:16:00.000-07:00

"Be thankful when you don't know something, for it gives you the opportunity to learn.

Be thankful for the difficult times, during those times you grow....."

The mail...

2010-04-28T17:40:00.000-07:00

The mail came today and in it were the results from my last labs. They are not as good as they were in February. February numbers were not as good as January. January numbers were the same as October. October numbers were better than August.

What do the numbers say? According to the note from my Dr. that was included some numbers are out of the normal range because of the prednisone. Other numbers might mean something different if I get progressively weaker over the next few weeks.

It's amazing how numbers can mean so much or so little depending on what you attach them to.

A paycheck, lab results, a bill, an investment, your retirement, a grade, a weight, a date, a phone number, a recipe, a birthday....the list goes on but still it is just a number, nothing more, nothing less. Not an easy thing to remember when it's not what you hoped for or expected.

Time flies....

2010-04-28T06:35:00.000-07:00

It's already been 16 day on prednisone and the greatest challenge right now is sleep and being "short fused". I'll do my best to explain this....
It's just this gnawing, brewing sort of feeling. Every little noise is annoying, everything seems more intense. I can look inside and see myself being unreasonable. The other day it effected our household. Bill had a bad day at work and then he got to come home to a crabby wife, a house where nothing had been accomplished and his bad day wasn't going to improve.
I knew I was being unreasonable and the thing that really stinks is I could not pull it together. This happened the last time I took prednisone and there is another prescription I can take "to take the edge off" but I am not a fan of pill popping so haven't pulled that bottle out yet. For the love and happiness of my family I probably should.

Tomorrow I have a 2-3 hour appointment at Endeavor Therapy. It is here that I will begin Pulmonary Rehabilitation. I am anxious to go because although it's only been 16 days, I don't think the prednisone has done anything and it's really hard to measure if things are getting better or not. I have a "gut" feeling they are not. It will be nice to have an expert opinion and a plan of action for making changes and improvments where I can.

On Tuesday night I led a conference call for members of the Myositis Association in Wisconsin.
There are 18 people registered in Wisconsin and four of us participated in the call. We have made arrangements to meet again via conference call on the fourth Monday of every other month and we began discussions of having a simple fundraising event sometime this summer. I've got some work to do on that and hoping to team up with Culvers as it seemed that we each have one in our home town or nearby. More to follow on that in the weeks/months to come.

I'll let you know how the appointment goes tomorrow.
Kris

Be Thankful

"Be thankful that you don't already have everything you desire. If you did, what would there be to look forward to..."

One sentence journal entry 3

2010-04-28T06:32:00.000-07:00

"I sometimes wake in the early morning and listen to the soft breathing of my children and I think to myself, this is one thing I will never regret and I carry that quiet with me all day long."

Story People, Brian Andreas

One sentence journal entry 2

2010-04-23T15:04:00.000-07:00

An email from my dad contained these words:

"All is well with us and hope with you too as we watch GOD'S plans unfold in each of our lives. Love Mom and Dad too"

One week and three days...

2010-04-23T14:26:00.000-07:00

One week and three days into my prednisone treatment.
Here's what I have noticed....

Sleeping is a challenge. It's hard to fall asleep and stay asleep.
Just this week my left hand started to receive visits from the uncontrollable shaking.
My upper arms and shoulders have the ache returning.
I went for a walk with the kids and the dog the other day and when I got home I was frightened by the shortness of breath I was experiencing. It didn't seem any better and maybe, slightly worse.
I had one day of uncontrollable hunger. I didn't make all the best choices but I forgave myself and have moved on. That day just happened to be the same day that Bill called and said that sometime in the next 30-90 days he would be getting his 45 day notice that he would be losing his job.

Now, as a mom and a wife the news above sent me into calm, planning and preparation. What do we need to take care of before this happens? Healthcare. Number 1 concern.
In my head I have made the decision that I will need to return to work full time. Our health insurance benefits are covered through Bill's employment and we certainly can not go without it.
As a part time employee I do not have benefits, but if I return full time I can obtain health insurance through my employer. Family taken care of.
Returning to work will mean I lose my disability benefit and being right at the beginning of another chapter in my disease it wouldn't be the best time to let go of that. So, we are not jumping the gun. We are seeking out all the options that we may have available to us. Based on early conversations, I am likely going to be declined if we have to buy insurance independent of a employer sponsored plan.

On a happier note...I am thinking about designing another fundraising tshirt.
I want to incorporate a bumble bee and I am thinking about other words or phrases that start with be...
Believe
Behold
Be happy
Be true
Beautiful
Just Be

Please let me know if you have any other "be" words that might work.
Thanks again for checking in.
Have a super weekend.
Kris B

One sentence journal entry

2010-04-17T19:09:00.000-07:00

Another take away from the book I just finished reading is a one sentence journal entry. I intend to find the perfect book or calendar or journal to put this in but for today it's going to go right here.

Highlight from today:
Going downstairs at 8:00 am, the kids got up this morning and turned on cartoons allowing Bill and I to stay in bed a little longer. I went to say good morning and they were a bit grumpy. So I jumped on the couch and rolled on them and laughed and said "I am rolling my happiness all over you....happy, happy, happy...rolling my happiness."
I don't know what it did for their day but it got mine started wonderfully.
I can't wait to see what tomorrow brings.

Good night.
Kris

Looking a gift horse in the mouth...

2010-04-15T18:48:00.000-07:00

I was curious so I looked it up and this is what I found out:
The value of a horse is related to it's age, a younger horse is more valuable than an older horse.
You can determine the relative age of a horse by inspecting its teeth. Back in the day a horse was commonly given as a gift. If a man received a horse as a gift and then inspected inside its mouth, he was trying to assess the value of the gift he received. So, the saying means that you should not assess the value of any gift that you receive; rather you should be thankful for the thoughtfulness of the gift-giver.

Yesterday I took Star for a walk. The daffodils were bright, the sun shining, the trees budding...it was beautiful. Today a walk did not fit into the craziness.

I did try something new today. It was inspired by a book I am reading for my book club meeting this Saturday. It's called "The Happiness Project". In the book, the author decides she will carry a camera with her always. I am a terrible picture taker. My sister Beth does an amazing job, she has a great eye for it and that talent combined with her patience and really nice camera make it easy to keep my old camera out of reach. Today, I packed my camera in my purse and I don't know for sure but I think it may have inspired me to look for the beauty that surrounds me.
I noticed the tulips this morning as I rushed out the door to get to work. They looked different this morning than they did when I first noticed them yesterday afternoon. In the early morning, before the sun comes up the petals were closed up tight and their color is very different when it's closed up versus open. Tonight when I was laying in bed with Jake I noticed him sleeping on his side, with his hands folded under his chin...he was so peaceful. He is my little boy, growing up too fast. When I went back upstairs with my camera the moment was gone but I am so glad I noticed it.

I am thankful for the thoughtfulness of the gift-giver!
Good night.
Kris

Day 1

2010-04-14T07:04:00.000-07:00

Well, day 1 on prednisone has come and gone.
I got through the day with no sweets (I did have strawberries with a little whipped cream)
I took the stairs instead of the elevator.
I wrote down what I ate.
I did not go for a walk. Today I will walk when I get home from work.

About 7:00 PM I got a fairly bad headache that lasted until about 7:00 this morning.
I couldn't fall asleep which had the added benefit of extra time with Bill. I usually fall asleep hours before he does and last night we watched "Parenthood" and "24" and then went to bed at the same time. He fell asleep and I laid awake until at least 2:00.

Today is a new day, the sun is shining, and another benefit of the prednisone is that my hands don't hurt nearly as bad as they normally do. I know that I am taking it for my lungs but I'm certainly not going to look a "gift horse in the mouth" (what does that mean anyway)
This morning I had a quick conversation with my investment guy. He's a great guy, very knowledgeable and caring. He always takes time to ask about the family, the kids, my health.... He shared with me that his daughter was recently diagnosed with an autoimmune disease and is also being treated with high doses of prednisone. I told him about the book "Coping with Prednisone" and he is going to buy it for his daughter.
It was nice to be able to share what I learned with someone who I go to for answers. I was able to give back because of my experience with this. I hope that opportunities continue to present themselves where I can see the positive in all of this.

Have a blessed day.
Kris

Down the hatch...

2010-04-13T06:47:00.000-07:00

Today I took my first 60mg of prednisone.
Who knows, maybe the side effects won't get me like they did the last time.
I know more now. I'm smarter than the last time around.

So, I don't have a choice about the medication but I do have other choices I can make. Here are a few:

Today I took the stairs instead of the elevator.
I am going to try really hard to eliminate sweets and treat myself to fresh berries for dessert instead.
I am going to walk 5 days a week or more. Star's a lucky dog.
I am going to write down what I am eating, when and why.

I talked to the nurse this morning. She gave me the tapering schedule for the prednisone and then we talked about the possible side effects. She said it's a lot like having PMS all the time. I may want to eat all the time. She recommended that I really listen to my body to determine if I need something to eat or if it's the medicine (that's why I will be writing it all down). She said my face may puff up but I need to remember that it's temporary and will go away when I stop taking the medicine. She said I may have unexpected emotions (sadness, anger, etc...). Again, reminding myself that this too shall pass. That's why I am going to walk more.

60mg's for one week
40 mg's for 4 weeks
30 mg's after that.
My next appointment is scheduled for July 28th which seems an awfully long time away but that's the plan and I am going to stick to it.

I know you are praying for me. Please make sure to include Bill, Emma and Jacob. Like I needed to ask....
Thanks.
Kris

Prednisone it is...

2010-04-11T10:36:00.000-07:00

Last Thursday night as we packed for our Florida vacation the phone rang and it was Dr. Cohen. She had the opportunity to talk to Dr. Adl and wanted to discuss my concern regarding the use of prednisone to treat my lungs. Prednisone it shall be for the next four months. I have a choice not to take it but the consequences are unacceptable, unthinkable really.
Prednisone gives me the chance to get rid of the inflammation in my lungs. If I don't get rid of the inflammation in my lungs there is a very likely chance that the inflammation turns to scar tissue which cannot be reversed. If your lung tissue scars it no longer moves. If your lungs can't move...you die.
Of course she was a little nicer in her delivery of this information. It went something like this...

"I know you don't want to gain weight....I know you don't like how it makes you feel....we can try to off set the negative side effects with other medications. I do know that you love your kids and your husband and you will do what you need to do so you can continue to be around for them"

As you can imagine, this is hard information to swallow. I packed, I cried, I packed some more. Before going to bed, Bill said to me that he would support any decision I made as he was sure that if the roles were reversed, I would do the same for him.

At 1:00 in the morning the alarm went off and by 2:15 AM we were in the car starting our long drive down to Florida. Before getting in the car Bill and I hugged for a long time and I told him that if the roles were reversed, I would make him take the medication. There would be no way I would let him chose the unthinkable. He smiled, and hugged me tight and said...honey, you just needed time to get there on your own. If you didn't, I would make you take it too.
In Tennessee I called the lung doctor and told her I had prednisone with me and would start taking it right away. She told me I should wait until after my vacation. Bill and I both took that to mean that although it is a serious condition, maybe it wasn't quite as bad as the picture we had painted if I could wait until after vacation to start.

Tomorrow morning, as promised, I will call the doctor and get started on getting better. In addition to the prednisone I will start pulmonary physical therapy and in four months the CT Scan and Pulmonary Function Tests will be repeated to see how far I have come.

I will keep you posted...thanks for checking in.
Kris

The results are in....

2010-03-31T13:24:00.000-07:00

Today was my follow up appointment with Dr. Adl regarding the bronchoscopy. The results were able to rule out infection and combined with the results of the earlier CT Scan and Pulmonary Function Tests everything points to the myositis being active again.

Basically Dr. Adl believe that the myositis and interstitial lung disease that came with it has indeed advanced. There are basically three levels of pneumonitis and the level that I am at is the preferred one. It is called nonspecific interstitial pneumonitis (which basically means inflammation of lung tissue).

Dr. Adl's treatment recommendation is high doses of prednisone with a follow up pulmonary function test and CT Scan in 4 months (like 60 mg for four months....yikes).
In 4 months we will see how I am doing and at that time if there are no improvements they may switch and put me on a different immunosuppressive drug.
From past blog entries you know how much I do not want to go back on prednisone.

I did share my concern with Dr. Adl about going back on prednisone so she is going to defer to Dr. Cohen for that decision. She emphasized how very important it is that the three of us (two doctors and me) stay in communication with each other.
I learned something new; the "ground glass" which is what it has been called in the past can be reversed with proper treatment. That's good new and a good thing to focus on.

In our first office visit with Dr. Adl she recommended that we use a bed wedge and elevate the head of our bed 8-10 inches. I do not have noticeable heartburn or acid reflux so I did not immediately act on this suggestion. However, today when I asked if I needed to continue taking the heartburn/acid reflux prescription and she said "absolutely", I followed up with the question"how important is that bed wedge?" Apparently it is very important and may help prevent any additional factors from taking their hits on my lungs which are already compromised.

You don't have to tell me twice...off I went to Bed, Bath and Beyond with my 20% coupon in hand. I am now the proud owner of the bed wedge pillow.

So, it wasn't great news, but it's not terrible either....and so we continue, taking it one day at a time.

Thanks for checking in.
Kris

I have a small nose...

2010-03-25T07:19:00.000-07:00

Well, yesterday has come and gone. The procedure is over and now it's another week of waiting.
I will bore you with the details because some of you want to know what it's all about, others just want to know I am OK.
I am OK. If you want a play by play of yesterday, read on...

Auntie Vicki came over to get the kids off to school. Bill took me to the hospital.
I got prepped for the procedure with an IV that would supply me with the fantastic medication that would help me forget.
They wheeled me in to the room and hooked me up to all the necessary machines. A respiratory assistant had me breathe on a misting tube that numbed the back of my throat and tasted like crap. Then she took a tube (about the size of a travel toothpaste) filled with a lubricant and had me snort it...the whole tube. This also smelled terrible and made me gag. At this point I began to wonder when I could get the "forgetting" medicine. Now, the respiratory assistant said that she needed to prep my nose for the tube that the doctor would use. She took a very long q-tip and started working it into my nose and down my throat. First one side, than the other, back and forth, over and over. This was more than a little uncomfortable...and the breathing exercises that I learned when I was pregnant with the kids came in handy.....WHERE IS THE FORGETTING MEDICINE.
The doctor came in, asked if I had any questions and that is the last thing I remember. Apparently it was all done in about 20 minutes. She washed out my lungs with a fluid and than sucked the fluid back out. This is what they will be testing over the next week to determine what is going on in there.
I was in recovery for an hour or two letting the sedation wear off and by 11:00 we were headed home. Bill bought me a chocolate shake because my throat hurt, tucked me in bed where I stayed until about 4:00.
When I woke up I had a terrible pain in my back under my right shoulder blade. I could not take a deep breath without there being a shooting pain and this continued for about 45 minutes before I decided I needed to call the doctor back.
Off we went, back to the hospital, this time with the whole family in tow. I needed another x-ray to make sure that my lung had not collapsed. Good news...my lung had not collapsed. I had fluid remaining from the procedure and that is what was probably causing the pain. They sent me home with instructions take the deep breaths even if it caused shooting pain to take more Tylenol and/or Motrin. If the pain got any worse, I should head to the ER.
Back home we went...this time Bill stopped and bought me a strawberry shake. ;0)
Two shakes in one day; I am a lucky girl.
This morning when I woke up, the pain was gone. My throat is a little sore but not nearly has as bad as my sinus cavities. They certainly feel like they took a real beating. Did I mention in the end that my nose was too small for the procedure and they had to go down my throat? I wish we would have known that before the q-tips.

So, I am fine. It's back to waiting. I will post more when I know more.
Thanks for your prayers and for checking in.
Kris

The nurse called....

2010-03-17T18:55:00.000-07:00

The nurse called yesterday just to check in and see how I was feeling and to see if I had any questions. I didn't call her back. I had to take some time to think about it which I did last night as I was trying to fall asleep. From very deep in my being came tears a flowing....I cried myself to sleep. It was a combination of being scared, tired, achy, worried, etc...

Scared of the procedure: will it hurt, will it work, will it provide the answers they doctors are looking for, what will they find, how will they treat their findings?

Tired: I have been taking advil PM to sleep at night. It's working but I don't want to take it every night. I wanted to fall asleep but I couldn't turn my brain off, you know...the scared and the worry were taking over.

Achy: my hands ache nearly all the time now. It's bad at night when I am laying there trying to get comfortable. Where should I put them? On my stomach, over my head, under my pillow, it's just hard to find the right placement.

Worried: I watched the show "Parenthood" last night. I loved it but I laid in bed wondering what kind of parent I am being. I think I am a good mom, but how do I know for sure? Worried that the procedure next week won't provide the answers and we will need to keep searching. Worried that I will have to take prednisone again. The drug has terrible side effects and I don't like the person I become when I am taking it and I took it for nearly three years because my body and disease became dependent on it. It took forever to wean myself off of it. The other day someone (not my doctor but someone with personal experience with autoimmune disease) said I may just need to take a low dose forever to keep my disease in check. NO, I don't want to. There has to be another answer. Please let there be another answer.

Today I called the nurse back. She said the procedure is fairly quick. I need to be at the hospital at 7:30 and should be on my way home by noon or so. They will get an IV set and give me a conscious sedation. This means that although I will be "awake" I won't be able to remember what's going on. She said I will probably have a sore throat the next day but there shouldn't be any other side effects. I would be lying if I said I wasn't scared or worried anymore but I do feel much better about it.

I talked to Emma and Jacob about it last night. Jacob said he understood exactly what was going to happen as he had watched "Animal Emergency" and saw the doctor put a camera scope down the throat of a pelican and they got fishhooks and fishing line out of it's stomach that way.

So that's the update. It feels good to get it out there. Please know that although I don't sound strong, I am. My life has been planned by our great Creator, He holds me in the palm of his hand and I can feel His strength.

Good night.

Kris

For a week now...

2010-03-16T17:42:00.000-07:00

For a week now I have been thinking about writing about friendship. It was a week ago last Friday that I went away for the weekend with a fairly new group of friends. We had a wonderful time and I came back wondering how it was that I was blessed to be able to add new friends to my life in my forties.
But something else got me thinking....what do I have to give to these new friends? What am I giving to the friends of my thirties, the friends of my twenties, the family members that are more to me than my sisters or aunt, uncle or cousin? What do I give? Do I even know how to be a good friend? How is that defined these days?

Today I got a facebook message from a college roommate. It made me smile and think of her and the fun we had. Are our lives totally different now? Would we have anything in common except for memories? I don't know. I do know that I think of her every new years eve and hope she is doing well. She was a wonderful friend.

I received an email from my cousin who has shared kind words and prayers and faithfully a birthday wish, anniversary blessings, and "just because" notes for years and years even though I am TERRIBLE at sending these wishes to those I cherish and call "my friend".

This weekend I got to spend some time with a friend I met early in my professional career. She was with me through my dating life with Bill, with me the day we got married. I will cherish the note her husband left on our car window the night before we we had our first baby. They had had their first baby a year before and he shared some wise and wonderful words that night as we stepped into this next stage of life. We each have two kids now that are very close in age, but our lives are busy and mostly we see each other just in passing. Does she know how much her friendship means? What can I do so she knows this?

To you my friend, from high school, college, my twenties, thirties and forties...tonight I will use my blog to reach you.

My friend, if you are out there reading this entry, I hope you know how much your friendship means to me. Thank you for your kindness. Thank you for your prayers. Thank you for reaching out with your words and your hugs. I have a lot to give to our friendship. I can be a great listener, although my hands are weak, my heart is strong...please lean on me. If you need a last minute childcare provider, someone to pick up your child after school because your appointment is running late, someone to share a bottle of wine with because you need to sit with a friend. Someone to walk with (I'm good for about 20 minutes if you are doing all the talking) I am here for you...my friend.
Good night.

A wise woman said.....

2010-03-08T06:11:00.000-08:00

Maya Angelou said this:
'I've learned that no matter what happens, or how bad it seems today,
life does go on, and it will be better tomorrow.'

'I've learned that you can tell a lot about a person by the way he/she
handles these three things: a rainy day, lost luggage, and tangled Christmas
tree lights.'

'I've learned that regardless of your relationship with your parents,
you'll miss them when they're gone from your life.'

'I've learned that making a 'living' is not the same thing as 'making a
life.'

'I've learned that life sometimes gives you a second chance.'

'I've learned that you shouldn't go through life with a catcher's mitt on
both hands; you need to be able to throw some things back...'

'I've learned that whenever I decide something with an open heart, I
usually make the right decision..'

'I've learned that even when I have pains, I don't have to be one.'

'I've learned that every day you should reach out and touch someone.
People love a warm hug, or just a friendly pat on the back...'

'I've learned that I still have a lot to learn..'

'I've learned that people will forget what you said, people will forget
what you did, but people will never forget how you made them feel.'

No new autoimmune disease fighting for attention...

2010-03-05T10:48:00.000-08:00

I just talked to Dr. Cohen and she gave me the results of the other tests.
There are no other autoimmune diseases trying to fight with my myositis and everything else looks fine too.
The CPK number is just outside of the normal level at 189. She said in most cases that wouldn't require a second glance but for me it's up from 78 so that might be why I am experiencing increased fatigue and the pain in my hands, wrists and joints. To put things into perspective though, it was over 3300 when I was first diagnosed. I have to remember how far I have come.

Dr.Cohen does not believe the methotrexate or azathioprine that I took in the past is what is in the tissue of my lungs as that is very rare side effect and often clears itself up. It's been well over a year since I took either of those medications. She did say that Dr. Adl is the expert in the area of lungs though and that is why I am seeing her. She agreed that no further changes in medication need to happen until the results of the brochoscopy are back. I will schedule a follow up appointment with her once we return from Florida unless my symptoms worsen (is that a word?)

I am glad there is nothing new and I plan on enjoying the sun and fun the weekend has in store for me. Sounds like I might be going somewhere warm. That is not the case, just the forecast here in Wisconsin.

Bronchoscopy

2010-03-01T14:38:00.000-08:00

Bill went with me today to see Dr. Adl. She was very nice but more important seemed to know her stuff. She explained that above all else we need to figure out if what is going on in my lungs is an infection. Once we know that, we can figure out how to proceed. I am scheduled for a bronchoscopy on the morning of March 24th.
A bronchoscopy is an exam used to help diagnose lung problems. This exam provides a direct view of my breathing passages. A thin flexible tube called a bronchoscope is used. A special light and tiny camera are attached to the tube. The bronchoscope will be used to gather tissue samples by brushing and biopsy. This is an outpatient procedure and if all goes well, shouldn't take more than 45 minutes to an hour.
I am guessing that I won't know any more until then.
Thanks for checking in.
Kris

Oh what comfort

2010-02-27T12:04:00.000-08:00

Well, I just knew that a day would come when I would want to go back to that sermon that Pastor Henrichs gave months ago and it's Saturday and the copies that I made of it are in my desk drawer at work so I backtracked through the blog posts of the past and I found it. As I was looking for it, I also had a chance to reflect on all the ups and downs that have been part of this journey/diagnosis. The comfort for me can be found in the next paragraph that I took right from the sermon. These are not my words but my Pastor's.

But the Lord did not leave Paul empty-handed in his suffering. He didn’t tell Paul to toughen up or just “rub some dirt on it.” He gave him a wonderful promise—a promise from which Christians have drawn strength and comfort for two thousand years: Jesus said, “My grace is sufficient for you, for my power is made perfect in weakness.” The grace of Jesus Christ is sufficient. The grace of God that flows from the cross of Christ into your life is sufficient. It is enough. Nothing more is needed. The power of Jesus is perfected when you are at your weakest. “When I am weak,” Paul writes, “then I am strong.”What about you? Do you believe that? Do you believe that the grace of Jesus Christ is sufficient—or is there something more that’s needed? When Paul heard those words from Jesus, all he had to do was reflect on the events of his own life to see that what Jesus said was true—to see that when he was at his weakest, Jesus was at His strongest. Paul had been beaten, flogged, stoned, shipwrecked, hungry, thirsty, naked, imprisoned and exhausted. But through it all, the grace and forgiveness of Jesus Christ had sustained him—compelled him—to keep on going.

Oh what comfort.

I've got you covered...

2010-02-26T06:04:00.000-08:00

You wouldn't think it would be hard to ask someone to pray for you.
It's fairly easy to say "could you keep my friend, parent, sister, child, childs friend...in your prayers" and of course, it is always received well and you know the prayers are being made.

However, turn the table, and say this "Could you pray for me?"
That is hard.

Why?
Because it is like saying "I can't do this alone." or "I need help." or "I am not well" or "I'm scared".

It would be a whole lot easier if we asked the question more often. "Could you pray for me?"

"I want to get to work safely" or "I need to make smart choices at the grocery store." or "I want to be a good role model for my children"...you know, the events that happen daily that we don't think about twice.
The other day my mom sent an email and she said "you know, we are always praying for you."
They pray for their children, grandchildren, friends, each other, every day.
No special requests need to go to my mom and dad. They have me covered, daily.

So, to you my friends, I am going to pray for you today and tomorrow, daily. Not because you are sick or need help just because you are worth praying for.
May your day be blessed and may you see those blessings through all of lifes events.

Now, if your day comes and you need an extra prayer, I hope it will be easier for you to ask. I know it will be nice for me to be able to say to you..."No special requests needed. I've got you covered. You are in my prayers everyday." I learned that lovely life lesson this week from my mom.

Happy Friday...I've got you covered.

News is news...

2010-02-25T18:17:00.000-08:00

This morning I spoke to Dr. Cohen and the news is news. That's it. I could create a story and worry about what it might mean or could be, but really....why? It is only what it is until we know more and then again, it will only be what it is, no more and no less.
Not all of the lab results are back yet but the ones that are complete are mostly normal. There are two inflammation tests that are not normal but they are not way out of whack either. The tests we are still waiting on are antibody tests. They will show if there is another autoimmune disease that is jealous and wanting to start a fight with my myositis. That is fairly common among autoimmune diseases.

Dr Cohen did speak to a lung specialist about my situation and I have an appointment with Dr. Dima Adl on Monday morning at 10:30.

The doctors agree that there is definitely something going on in my lungs. It is not in the tubes but in the muscle/meat of the lungs. It could be the disease or it could be an insidious(sp?) infection which means rare or unusual or it could be something else. Dr. Cohen believes in the ability of Dr. Adl and is pleased that she will see me as soon as Monday. She told me to try and have a great weekend and to keep worry at bay. She will call me when any other results come in.

Stay tuned for more information and insights from your favorite myositis patient, of course, I am assuming you know no one else with it.

Love,
Kris

On second thought....

2010-02-25T06:42:00.000-08:00

During my appointment on Tuesday, Dr.Cohen said she would call me when she had the results of all the tests and had had the opportunity to talk with the pulmonologist. I was fine with that. It seemed like a good idea to have all the information so that a plan could also be part of that discussion. Then a day passed. One out of the 5-7 days that I am expecting to wait. I want to know something, anything...one piece at a time will be just fine with me. I called the doctor and left a message yesterday afternoon saying just that. Hopefully I will hear something today. To help feed my head with knowledge and put things into perspective I did some google searching....don't do it. I should have listened to Bill when he said, "stay away from the internet today. The doctor will tell you everything you need to know."

Last night I took a long hot shower and was in bed by 9:30. At 12:30 I was awake because my hands were achy. I came downstairs (Bill was up decorating a cake and making cupcakes for a bake sale) took some advil and went back to bed. An hour later I was still laying there, wide awake so I got up and took my pillow to the couch downstairs and watched "American Idol"
3:00 AM passed, then 4:00 AM still awake.... 4:30 I went back upstairs to bed, turned off my alarm realizing perfectly well that sleeping or not sleeping I was not going to be able to get up and get to work at 8:00 AM. I did fall asleep sometime after 5:00 and I missed seeing the kids this morning before school. That makes for a lousy way to start a day. Their love and smiles and even the morning grumpiness that sometime shows it's face is all part of a wonderful way to start a day.
Today I missed it, tomorrow will be better.
Tomorrow will be better.

Here's the update on my test results...

2010-02-23T13:46:00.000-08:00

Last week my doctor ordered two tests to be repeated…a pulmonary function test and a CT scan of my lungs/chest. The reasoning for the order is because I have had a persistent cough in the mornings and I have been experiencing shortness of breath. This is most noticeable when I cough or walk up or down the stairs.

Today when I was at the doctor she shared the results of the CT scan. At this point there have been significant changes in the progression of the interstitial lung disease. The conclusion actually reads as follows:
1) Significant interval progression in interstitial lung disease with bibasilar ground glass air space and interstitial changes as well as scattered areas of linear interstitial and ground glass air space opacity peripherally in both upper lobes as well as the right middle lobe. A component of superimposed aspiration pneumonitis would not be excluded in the lower lobes or the lingual where the areas of opacities are the most confluent. Clinical correlation is suggested.
2) No pleural effusion
3) No adenopathy.

Of course I don’t understand any of the above, do you?

What I do know is that Dr. Cohen ordered some additional tests to be run when they run my normal labs. There may be an overlapping disease which is common in autoimmune diseases.
She did not receive the written results from the pulmonologist but will likely have them this afternoon. The results themselves, without the professional interpretation, show a decrease in my lung capacity and function since the test I had a year or so ago.

Once she has the results from the lab and has talked with the other doctors she will get back in touch with me to make a recommendation (5-7 days) Although my skin looks good and my muscles are working well, my joints (especially in my hands and wrists) and my lungs indicate the disease (myositis) is active. She wants me to start up on prednisone again but agreed to let me wait on that until she has all the facts.

If you would, say a prayer for me that helps take the worry away, give answers to the doctors and restores my health, it would be greatly appreciated.
Last Wednesday in church we sang “Abide with Me” during communion. A gentleman who we worship with had just received a diagnosis of cancer and I could see him singing at the communion rail. I have been meaning to write him a note, letting him know I have been thinking of him and praying for him. Isn’t this a beautiful line from the hymn…”Ills have no weight and tears no bitterness….I triumph still if Thou abide with me!” It even has an exclamation point.
Those are comforting words when you are not feeling well and the exclamation point make me want to say/sing it with confidence.

Love you.
Kris

Update regarding my test of endurance

2010-02-16T06:23:00.000-08:00

I was changing things up, working seven hour days instead of six hour days in hopes of getting the OK from my doctor next week to return to work full time. I worked four seven hour days and then two hours (still limited to 30 hours) in the first week. I worked two seven hour days the next week and that was it. I couldn't continue with that schedule. I guess I failed my test of endurance. I guess I am going to have to work my way into this. One seven hour day one week, then two seven hour days for awhile, add three when I am ready, etc.... It's going to take longer than I had hoped.

Tomorrow I am having a repeat pulimonary function test followed by a CT scan of my chest. This is being done to address the dry cough I have had for months as well as shortness of breath. Early in my disease I was diagnosed with interstatial lung disease. The lungs don't repair themselves but it is important to make sure they don't get any worse as well. I have base line pictures/tests for just about everything and that includes my lungs. More to follow on that in the days and weeks to come.

On a happier note, last week Tuesday we got a lot of snow. So much that Jake's after school program was cancelled. When he got off the school bus I was already dressed in my winter play clothes (long underwear, hat, scarf, gloves, etc...) and that is exactly what we did. We played in the snow. We played tag, made snow angels, wrestled, etc... When Emma got home from school the fun continued for another 15-20 minutes. This is an afternoon I won't soon forget and I really hope they don't either. When Jake got off the bus on Wednesday, Thursday and Friday he asked each afternoon if I could play again...I couldn't, that 45 minutes on Tuesday wiped me out for nearly the whole week. It's really sad for me to have to say no to something that's good for both of us and really fun for both of us. That is certainly a more difficult "endurance test" to fail. As I look at my goal and things to aspire too, being active with my family will have to take priority over returning to work full-time. Remind me of that if you see me going in the wrong direction.

Have a great day.
Kris

All is well...

2010-01-31T11:24:00.000-08:00

All is well.
My hands no longer wake me up in the middle of the night. Only once since I took the prescribed remedy did that happen again. I am sleeping well. I have been struggling with a morning cough that is worrisome and although my wrists do not wake me up in the middle of the night, I know that they are not right. They crackle and ache throughout the day. Somedays it's worse than others. These are things I will mention to the doctor when I see her in a couple of weeks.

This week I am going to give myself a test of endurance. I am still limited by my physician to a maximum of 30 hours per week and no more than a seven hour day. I have been working six hour days pretty consistantly and this week I am going to bump it up to seven and see how I do. I have a doctors appointment coming up on February 23rd and I would like to be able to ask the doctor to let me return to work full time.
Don't get me wrong. I really enjoy 30 hours a week. It is a nice balance of being able to be at work and be at home but what continues to loom over me is "disability". I'd like to be done with that.
To be done with that, however, does mean that I need to return to work full time.
What this time has taught me though....

My children and my husband have to know that they are more important than my job. I may say it to them daily but it will be my actions that speak louder than words.
It is important to make time to volunteer in school and at church where my kids can see that I think school, and their teachers, church and our faith are important.
Planning and communicating the plan makes life easier on everyone. Meals, activities, meetings, etc...
Too much is just that...too much. Pick your battles. Chose what is most important. Give back in a way that feels right and honest.
Smile. Life is full of blessings but you must have your eyes and your heart open to see them.

Please pray that I am physically able to return to work full time. Please pray that I don't lose balance when that happens. Please pray that the cough and the wrists are nothing to worry about and "this too shall pass".

Thanks for checking in.

Kris

Update on my hands....

2010-01-08T16:25:00.000-08:00

In the last post I shared with you the pain in my hands. Well, as you know I did not get the cortisone shots and I did see Dr. Sweeney. He prescribed a remedy that I am suppose to take for the next 3-5 days. The first night there was no change. I still woke up with a tremendous pain in my hand. The second night....sweet dreams, no pain. I actually woke up at 4:00 and wondered if I had really slept through the night.
We'll see what happens tonight and I will let you know.

2010-01-06T06:40:00.000-08:00

I started my day this morning with this lovely note in my work "inbox". I hope you enjoy it as much as I did.

May today there be peace within.

May you trust that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith in yourself and others.

May you use the gifts that you have received, and pass on the love that has been given to you.

May you be content with yourself just the way you are.

Let this knowledge 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.

A New Year....

2010-01-05T13:13:00.000-08:00

Happy new year family and friends.
Not much has changed since I last reported in. I did go ice skating with Bill and the kids on Sunday afternoon. I don't remember the last time I skated, it was definitely before children and I think it might go even farther back then that, though Bill insists we skated together at least once. With that being said, we met in 1989....so who knows.

I wasn't going to go. I was afraid that if I fell I would break something or worse yet, wouldn't be strong enough to get myself back up. It's a lousy way to live really, not doing something just in case...
Then I asked the kids if they wanted me to go and they both said yes (which also kind of surprised me because they love time with Bill). It was an opportunity to be together as a family and I wasn't going to miss it, so I went.
We had a wonderful time and I did it. I was wobbly. I was scared. I did it anyway. I marked that down as a success for the day.
We should all have a success for the day and something we hope to do better tomorrow. Funny how the "doing ________ better tomorrow" is easier to identify.
Please don't forget about the successes.

For the past two weeks or so I have been struggling with severe hand pain. The good news it isn't constant and it's only achy most of the time. The bad news is it happens every night between 1-4 in the morning and it is really painful then. Last night while I was awake trying to breathe through it I realized the best way to describe it really is it's similiar to a charlie horse you might get in your leg. There is just no way to get comfortable and no way to make it go away except to wait it out. Last night it lasted for quite awhile and this morning I was wiped out. I decided it was time to call the doctor. Her assistant called me back fairly quickly and said the doctor could get me in for wrist injection. WHAT? A wrist injection...did it really hurt that bad? Bad enough for a couple of cortisone shots? Well, last night, absolutely I would have done anything to stop the pain...this afternoon, a couple of cortisone shots sounded like a bit much, maybe it will go away on it's own.
I made a second call to Dr. Sweeney. He is the doctor I credit in helping me rid myself of most of the prescription medicition I had been taking. Primarily, he helped put an end to the prednisone.
I have an appointment to see him tomorrow and he may need to adjust or prescribe a new remedy. I know, I know....my kids call them sugar pills, Bill sometimes refers to this as going to see the witch doctor, but really, if it helps, isn't that what is important. Remember, Dr. Sweeney is first and foremost a traditional doctor of medicine and it wasn't until he found himself helpless in getting treatment for his young son severe asthma that he began to incorporate eastern medicine into his approach. I hope he can find something other than cortisone to help me out.

So, that's the scoop for now. I will fill you in more after my appointment tomorrow.
Thanks for checking in.
Kris

Away in a Manager...take care Tim.

2009-12-19T00:07:00.000-08:00

Yikes, so soon....and after weeks, I am posting twice in one day.

Well, it's late at night and I am just home from a Christmas party so my typing might be slurred...

I just got home from a party and before calling it a night I had to check my email. I received a "caring bridge" update from a friend who is battling cancer. He has a wife and two beautiful daughters and of course, this is nothing he "signed up for".

This past weekend I was with my family and my mom and sisters and a group of wonderful ladies enjoyed lunch and a Lorie Line concert. During the concert I found myself reflecting back on the many concerts we had seen together over the past 12+ years.
One moment, of one concert, over the many, many years came to mind....
"Away in a Manager"...one year this song was especially hard to sing.
I remember holding my mom's hand and praying with her (or maybe silently in my head)..."please dear God, not this year."
"Be near me Lord Jesus, I ask thee to stay. Close by me forever and love thee I pray. Bless all the dear children in thy tender care...and take us to heaven to live with thee there."
I was sick. I still am...but not nearly as bad as it was. I really did not want it to be over and three years later I am planning to celebrate with family and friends another wonderful birthday of Jesus.
I AM BLESSED.
Merry Christmas...a couple of days early.

Yikes...December

2009-12-18T08:10:00.000-08:00

December is taking it's toll on me. 30 hours at work, in addition to the extra running around that this time of year brings has brought some challenges. Last night, was ladies Bunko and I had to listen to my body and stay home and rest. I love Bunko night. It's a great group of friends who get together once a month and laugh and talk and share and I really look forward to these gatherings. Last night the kids and I were all in bed by 8:15. I needed it.

I have to share something very special that happened today though....
We have Secret Santa exchange at work. I know it's a secret, but I really wish I could say "Thank you" to my Secret Santa. My "Santa" made an honorary donation on my behalf to the Myositis Association. You can't imagine how very special that is to me. Well, I bet you can.

Just six more days until Christmas eve. I will never forget a message our pastor shared with us a few years ago on Christmas eve. I hope it sticks with me forever.
He talked about how at this time of the year we are all striving for "perfect"...the perfect gift, the perfect decorations, the perfect cookies or perfect dinner, etc... We often fall short, but that is all part of God's plan. The only thing about Christmas that is perfect is Jesus. If we let go of "perfect" we remember to see that gift and how "perfectly perfect" it was.

If I don't find the moments to log back in and post before Christmas...Merry Christmas everyone.
Kris

PS - A quote from my December work calendar "Possibilities - The rock that is an obstacle in the path of one person becomes a stepping stone in the path of another"

Just a few milestones...

2009-11-16T18:27:00.000-08:00

Milestone Number 1
This morning was "payroll Monday". Basically this means that managers review timecards to be sure time in and time out is reporting correctly. It was here that I noticed that I worked two 30 hour work weeks, back to back and that included making up for a three hour appointment at Froedert Hospital (that had a happy ending).

Milestone Number 2
This evening I facilitated the first Wisconsin KIT group meeting for the Myositis Association. There were five people on the conference call and three people that called me in advance of the call to let me know they were very interested in participating but just couldn't make the time that was chosen. The call was very interesting, the people that participated were great and they want to meet again in a month. Although the holidays are crazy busy, they all felt it would be a good idea to come together and support each other during this hectic time. Apparently going outside of the daily "norm" wipes more than just me out.

Milestone Number 3
I received my first check from "CafePress"/the BeeMarket for profits from sales. It was for $53.00 and as promised on the shop site, will be sent to the myositis association as a donation toward myositis research.

Thanks for checking in on me.
I appreciate you.

Good night.
Kris

Quote from Laurie's facebook page...

2009-10-28T13:02:00.000-07:00

The best things in life are unexpected - because there were no expectations.

and a note from my sister-in-law Kithy...
Kithy is going to the Packer/Viking game and she hopes that Brett throws a few completions to the old Green and Gold and that the Vikings lose of course.

:0)

Update....

2009-10-28T12:52:00.000-07:00

Just a quick note to let you know that the doctor was very pleased with how I looked and the strength tests were either unchanged or improved over my last visit.
I can now see her every FOUR months and have lab work every TWO months. This is a vast improvement over seeing her and having lab work done every month which is how it was in the beginning.
She also approved an increase to my work day and work week. I can now work a 7 hour work day and have an approved range of 25-30 hours per week. It's hard for both of us to move confidently to the next level as in the grand scheme of things, our formula is finally working.

I wish I had a lovely quote to share....let me bop over to my friend Laurie's facebook page and see what she has to share. I'll be back soon with one of hers.

Another month...

2009-10-26T14:03:00.000-07:00

Hello friends,
I can hardly believe a month has passed without a post to my blog. For those of you that have been following my journey you know that means I must be feeling pretty good.
I do. I am feeling good.
There is a way of living that has been gone so long, I don't even know how to get back there.
How to go about each day, doing what needs to be done without fear of how I will feel tomorrow...
I tried this over the weekend and it went pretty well. I did rest for much of the day on Sunday, but I think that being out late on Saturday night and getting up early Sunday morning would probably make just about anyone need a rest on Sunday.

Tomorrow I have my next appointment with my rheumatologist. I plan to ask her if I can increase my work day from a maximum 6 hour day to 7 hours and/or from 25 hour work week to 30 hours a week.

I will keep you all posted on how that goes....

Other updates:
I have new job responsibilities effective today. My new job title is Retail Sales Coordinator.

I will begin volunteering with a group here in Milwaukee called "Making a Difference". I will be meeting with a local high school and helping the juniors learn about working with a budget, how a checking and savings accounts works and how to obtain and use credit wisely.

Just sent out a couple of emails to people with Myositis that have reached out to me and announced that the first WI Kit Group meeting will take place via conference call within the first two weeks of November.

Emma is practicing and practicing for the upcoming Midwest Oireachtas being held in Columbus, OH over the Thanksgiving weekend.

Jake is learning to read, loves lego's and recently joined Bill for his first cub scout meeting.

Bill is still amazing us with his cake creation hobby, and all the things he can accomplish on any given day for his family, our school district, work, church, etc...

Our lives are blessed.
I will post another message tomorrow and update you on my appointment. Thanks for checking in.

Kris

Many thanks....

2009-09-25T15:28:00.000-07:00

A week ago today, my employer helped my fundraising effort by allowing employees to wear jeans and/or tennis shoes to work for a donation toward my myositis awareness campaign. This week I was presented with a check for $385.oo...that's a lot of people wearing jeans to work for my cause. Many thanks to PyraMax Bank for presenting the opportunity and my sincere thanks to my coworkers for their generosity. I also received a number of envelopes in the mail this week. The word is spreading and funds are being raised to help with research efforts.
I am blessed.

Today is better

2009-09-17T12:54:00.000-07:00

Today is better than yesterday.
I didn't see any walls in front of me today that couldn't be climbed. I did encounter the stairs at work and chose the elevator. After a day like yesterday I have to remember that it's still important to budget my energy in order to keep from having "lows" that knock me out of commission.

I am blessed with great friends, a wonderful employer and the best family anyone could ask for.
Thank you.

Kris

The wall...

2009-09-16T16:32:00.000-07:00

Today the wall was just too high to climb.
I sure wish I could figure this out. There were weeks there when things were going along pretty smoothly. You all know that because I had nothing new to report and you saw days and weeks go by without an update.
Yesterday I talked about stepping in place. Today, I got up, got ready, got to work, realized that my coffee cup (with tea in it) seemed heavier than normal and my arms ached and the elevator was a better choice than taking the stairs. I looked at my calendar for the day and quickly came to the realization that I didn't have the energy today to take it all on.
When there are days and moments like this it takes a lot to just look at the facts and deal with them as facts and not emotionally. I left work and was home and in bed by 10:45. I got out of bed at 2:45 and by 4:00 I felt the same as I did at 10:00...exhausted.
Everyone deserves better on days like these...the employees I was scheduled to meet with, my husband and kids, the dog, our house, the phone calls that went unanswered and the emails that went unreturned.
I am very close to calling my doctor to let her in on what's going on but there is an internal struggle going on. I am OK with staying in one place for now, things have been running smoothly but I am terrified to report taking a step backwards. It is time to take a look at that lovely sermon from Pastor Henrichs and feel the comfort that comes with the permission to be weak.
If you don't know what I am talking about, the sermon is posted on my blog and I think it's called "I am weak".
My friends, I am going to go watch Jake play with his legos. I pray that the next post will report more positive news.
Thanks for checking in.
Kris

One step forward, one in place

2009-09-15T14:49:00.000-07:00

One step forward....I was really excited today to see that the word is spreading. Today an article posted on onmilwaukee.com regarding Myositis Awareness. This is truly grassroots effort and it took my friend Jenny getting in touch with her friend Molly to get the article written. A really great thing about the article is I could quickly pass it along via facebook as there is a "share" button right there. So around the world it will go.....that feels great.

One step in place...Today I called Tommy, my physical therapist and told him I needed to take some time off. I have had a decrease in energy or an increase in fatigue or more need to rest...call it what you like, I have had better days. Don't get me wrong, I have had days that are much worse as well. I am getting up, getting to work, but then coming home and resting until I have to get up because the school day is over and the kids are on their way home. It bothers me that I am not going to physical therapy as that is key in making me stronger but right now I am back to the place where I have to budget my energy and use it sparingly.

It reminded me of an article I read about another myositis patient where she said, "you really don't remember what 'good' feels like anymore" I do remember very clearly what 'the worst' felt like and I am not there. My legs still carry me up and down the stairs. My arms still squeeze my husband and kids and my smile is hanging in there too.

Thanks for checking in...
Kris

Kris Barger's 2nd Annual Myositis Awareness and Fundraising Campaign

2009-09-02T19:19:00.000-07:00

You may have received this in an email format but if I didn't have your email address and you are still checking in on me, I wanted to reach out to you as well.

As many of you know, last year I had a walking campaign to raise money and awareness for Myositis and Myositis research. This year I would like to reach a greater audience and am hoping to connect with local media to assist me. I am not sure if you have connections with local media but I would appreciate your assistance if you do.

Although I can't attach it to my blog, I have a draft news release I received from The Myositis Association which will provide some general information regarding this rare disease.
This year I volunteered to co-chair a support group here in Wisconsin. We are just at the beginning steps of that process but it would be wonderful to reach out to a larger audience and offer the support and services of the Myositis Association.
I would be willing to share my story and can be contacted either by email or phone.

I have a campaign site set up again to collect money for research.
Please visit www.myositis.org. On the home page you will see

You can make a difference
Learn about TMA members' campaigns to raise funds and awareness for Myositis.

Click on TMA members’ campaigns and click on Kris Barger’s 2nd Annual Myositis Awareness and Fundraising Campaign.
I appreciate your assistance and your thoughtful consideration in making a donation and helping me raise money and awareness for this rare muscle disease.

Sincerely,
Kris L Barger
414-228-0971 (home)
414-858-2991 (work)

A rough start...

2009-09-02T19:09:00.000-07:00

Today was one of those days where I was reminded that I am sick. The last few days I haven't felt "right" and the last two nights I have had a really hard time sleeping. I can't get comfortable. This morning the muscle weakness (primarily in my hips and legs) and fatigue hit a high. I showered, I tried to get going but quickly realized defeat and went back to bed. Emma popped her head into my room before she left and smiled and said "I hope you feel better soon mom"
I did not want to be in bed. I wanted to be part of the morning hustle and then kiss everyone and head off to work but today it was not about what I wanted.

I'm OK.
I think I will be able to be part of the excitment tomorrow morning and I think I will be able to go back to work. I hope I will be able to sleep more comfortably tonight, that will make all the difference for tomorrow.

Thank you for checking in. Now that the school year has started we are going to get back into some kind of a routine and I hope that means more posting to the blog.
Take care.
Kris B

There is no new normal

2009-08-27T18:52:00.000-07:00

There is no new normal.
I continue to pursue such a thing but in reality there is only today, this moment.

As you know, it's been quite a while since I have last posted. It's summertime, we are busy and nothing has changed. I am still on the road toward remission. Same lab results, same medications, same number of approved work hours....yah da, yah da, yah da. The biggest change I have made this summer has to do with activities around the house. I am now doing more of the laundry, making more of our meals and in general trying to take back some of the things that Bill has been doing for so long. You know there is only so much one man can do and he has been doing it all.

Today, let me tell you only this one thing...my life is blessed with a wonderful husband, sweet children, an amazing family and great friends.
I have been blessed!

PS - I am pondering a second myositis statement (maybe a shirt, maybe notecards, who knows...but you, my faithful friends will know first when it is revealed)

Here's the sermon...

2009-07-10T13:53:00.000-07:00

I saw Pastor Henrichs this afternoon when I went to see the kids Vacation Bible School performance. It was great. It is so neat to see little kids as God's messengers.
Pastor said I could post the sermon and I think the best way to do that is by giving you the blog address. Thank you Cate, you saved me from having to try to figure out how I could post a link.

Have a wonderful week-end.

http://oursaviorwfbsermons.blogspot.com

It's been a good week

2009-07-09T18:19:00.000-07:00

It's been a good week on many levels and it started out on Sunday morning with an awesome sermon by Pastor Henrichs. It was so good, and I know that there will be more times that I need to hear it that I had him send me a copy. I am going to ask him if it's OK to post on my blog and if he says "yes", I hope you will check back and take it in. I can't even put it in a nutshell for you, what I can say is it was a reminder that we do not need to be strong. We all have thorns that we may pray, and beg and plead be taken out of our lives and if the answer isn't what we want, it doesn't mean God isn't listening...it's there for a reason.
I have been pursuing "being strong" or getting stronger for years now and it's exhausting and frustrating, yet through it all, God continues to bless me, I am always driven by the sense that there is a greater purpose for me and my life than what I might have mapped out on my own.

This permission to not be strong gave me the willpower to go to the yoga class I had signed up for months ago but was now dreading. I didn't want to be the one person in the room that couldn't do it. I didn't want to be weak and certainly not in front of people I didn't know and who didn't know me. I didn't want to have to explain the reason behind my weakness, I wasn't going to go. I had permission this week to not be strong and I went. I am glad I did. The instructor (a friend of mine from Bunko) gave me some pointers before class. She was encouraging and positive and understanding and all the things I needed for trying something new. I loved it and am looking forward to next Thursday evening.

This week I saw Dr. Cohen. I think we are both comfortable with the fact that although the disease is still there, it is stable on medication. The meds, along with the balance I've achieved between work and home, eating foods that are much better for me, getting rest when I need it and not pushing myself to be what I was but accepting the me that I am creating, all play a part in this. I asked Dr. Cohen if I could start Physical Therapy again and she agreed. My first PT appointment was on Wednesday and I have two appointments per week scheduled for a number of weeks to follow.

Well, although I have a renewed energy after yoga tonight, I also have a long day ahead of me tomorrow, starting with another doctor appointment. I am seeing an opthamologist. One of the medications I take can cause a loss of vision so I need to have an eye exam every six months, I think. I haven't noticed any changes so I am not worried.

Have a wonderful day and remember....you do not have to be strong. God is there to hold you up if you need Him.

Good night.
Kris B

Looking ahead

2009-06-29T17:25:00.000-07:00

Just re-read my last entry and decided I better get another one out here to let you know how I am doing.
We spent the weekend in Minneapolis with the Klehr family (my sister Sherry, husband Mike, kids, Sam and Maggie) and I have been feeling good. There have been many times over the past couple of years when I had to turn in early or skip on an outing because I didn't have the energy or was afraid of not having the energy. Not this time. We stayed up late, played pool, danced around the newly remodeled basement. We watched some of Sam's baseball tournament games, went to Emma's feis competition, walked the dogs and I even drove a couple hours on our way back home to Milwaukee.
How did I do? Pretty good. There are times when I still need help up when I am sitting on the ground and it takes awhile to get moving after riding in the car. I have aches and pains but they are no longer getting the best of me. For the most part, they are not stopping me.

The other things I did since my last entry:
I followed up with my food coach and she helped me navigate my most recent "detour". I guess that is the best way of describing those times when I get down on myself and allow that to get the best of me...it's a detour. I am still going to reach my destination. I feel comfortable with the food choices I am making and measuring my hunger scale (trying to not wait to eat until I am really hungry and eating only until I am satisfied), keeping the right foods in the house and talking through what I am feeling when I am going to eat something that provides nothing of value to my body.
The next stop on this journey is activity/exercise. I wrote down a single goal. I will exercise every day. This exercise may include walking, swimming, cycling, a DVD, or my physical therapy exercises. I have steps in place to ensure I am successful and I have asked Bill, Emma and Jake to hold me accountable. It may sound silly but I am giving myself a star sticker every time I exercise and I am going to reward myself with a new item of clothes or a manicure every 10 stickers until it becomes the healthy habit I desire.

The other thing I did was research our health insurance. I found a physical therapist that I want to work with and when I have my next appointment with Dr. Cohen (July 7th) I will ask her to write a referral for me to begin physical therapy again. I actually went ahead and made an appointment at Vita Fitness for physical therapy on July 8th. Dr. Cohen has been amazing to work with and I believe she will support this next step. My goal is to work with someone to incorporate weight bearing exercises into my daily life.
So, did I exercise today? I did not.
With that being said, I will head upstairs and do the exercises I received a couple of years ago from another therapist.
Thanks again for checking in. I am pretty sure there were a couple of prayers said for me after that entry and I wanted to let you know they worked.

an update

2009-06-18T18:38:00.000-07:00

Hello friends,
Sorry that it has been so long since I last posted anything to the blog. I prefer to write when I feel that I have something that needs to be said or maybe something inspiring. Sad to say, that day is not today either but I did need to let you know I was still out here, trying to make the most of each day.
This is the first week that the kids are out of school on summer vacation and I went from feel good to feeling OK and tonight I am very tired.
So far, the hardest thing about summer is that the clothes from last summer came out for the nice weather and they don't fit. I really , really am trying to stay positive. I am really, really trying to look at all the good that has come over the past year and all that I have learned and changed for the better and then I try and find something to wear and all the good quickly fades to something that feels very much like failure. I allow that feeling to be there. It's there for a reason and then I take a deep breath and appreciate that my legs took me for a walk today with my beautiful healthy children and sweet dog. My arms allowed me to hug my husband and I even put it all together and went swimming for 25 minutes tonight.
Deep breath...I am blessed.
Good night.
Kris

Do nothing...

2009-05-28T19:30:00.001-07:00

Do nothing....are you kidding me? Well, that is step number one in "the Joy diet" by Martha Beck. The next book on my list of books to read. This step actually came up in something else I shared. The 40 things to do to make 2009 great. There must be something to it.
The suggestion is to spend at least 15 minutes a day doing absolutely nothing.
Not mindless things, but nothing and see where your mind takes you. My thought was that it will lead me right to the 50 things I have to do right after I do nothing for 15 minutes. I tried it today and that is not what happened. I thought about my son, Jake for a moment and something we are working through with him. I thought about the upcoming week-end and what it will bring. I thought about the lousy interaction I had with someone I love and what needed to be said to heal. I thought about lightning (and it was a sunny day). I thought about the warmth of having our dog snuggled in next to me. What a wonderful quiet companion.....and so much more.
There is definitely something to be said for doing nothing for fifteen minutes. I am going to find time to do it again tomorrow and see what happens.

As I write this I am finding myself wondering, if you might be wondering how I pick the books I read. I wondered if you might be thinking "there she goes, reading another self help book". I'm not convinced that they are self help books. I believe that I am being lead in a direction that continues to open my mind to so many possibilities. They are books that inspire and make me feel good about choices I have made and inspire me to continuing growing into who I will be.

Update on how I have been feeling...
I have been waking up the past three or four days at 4:00 in the morning. No alarm, just awake. I have been laying there refusing to get up it's way too early and in not too much time I fall back to sleep only to be awaken by the sound of the radio and suddenly not wanting anything to do with waking up. Although I think I feel pretty good at 4:00, I have been feeling lousy at 5:50. My body aches, my muscles are tired, I have a really hard time getting going. It hurts to walk down the stairs in the morning and I find that there are times recently when I become short of breath and then I worry that this disease is planning to become loud in my life instead of the constant simmer that it has been and then I remember that this is part of who I am. This is part of God's plan for me and He has already guided me through some pretty bad days, He is not about to leave me or forsake me.

I could go on, but I just looked at the clock and it's almost 10. If I don't get to bed, 5:50 will be hard for a whole different reason.

Live well, Love Much, Laugh Often ...Believe.
klb

Note from Dr. Sweeney

2009-05-20T07:28:00.000-07:00

Last week I met with Dr. Sweeney to review the drugs I was taking and to see if I might be able to begin the process of weening myself from them. Many of the prescription drugs I take are in place to lessen the effects of other prescriptions and it becomes a crazy circle.
Here's what we decided.
I dropped one prescription completely.
I reduced a prescription to taking one dose in the evening instead of one in the morning and one at night.
I had my blood work tested and in a note I received in the mail from Dr. Sweeney this week it appears that my thyroid is now producing adequate amounts of the right hormone so I don't need to take that prescription anymore. We will test again in six months and see that the thyroid continues to remain stable. I have had a raging headache for about six days now and I will have to look into that but that will not stop me.
So here I am celebrating a success that isn't measured by a scale or the size of my pants.
YEAH !!!

Kris

Find Your Song - and Sing It !

2009-05-18T12:09:00.000-07:00

I finished my book "Throw Out Fifty Things" by Gail Blanke. I liked it, alot.

Chapter 24: Find Your Song and Sing it !
It reads: "You've got to have a song. I mean, has any band of brothers or sisters ever gone into battle, ever gone out to save the world, start a movement, or seize the day without a song? No, the bagpipes, the fifes and drums, the raised voices always went first. We all need a song."

So what's my song? I have no idea. I have a couple of thoughts but nothing I am sure is mine.
My very first thought was "Hark the Voice of Jesus Crying". Oh I love that hymn.
Years ago I used to love to run to the song by Shania Twain, "She's Not Just a Pretty Face" It's a empowering song about women. I could sing that song loud and proud and know I am making a difference, if only it had a different title.

Do you have any thoughts on this? Do you know what your song is? What song would you sing before beginning each new day, before going into that tough meeting at work or before heading into the doctors office for test results? I can't wait to hear what you come up with.
Any thoughts on what my song should be?
I will keep you posted and let you know when I decide.

I think Gail (the author)would be disappointed in me if I kept her book on my shelf. However, I am baby stepping my way through the process so I better hold on to it for a while. You should check it out at your local library or go pick up a copy at your favorite bookstore. By the end of summer I will be ready to loan out my copy. Let me know if you are interested.

The other thing I am working on right now is going back and reviewing the sessions I had with my food coach. The first session had an assignment of writing down my one month, three month and six month goals. I am going to work through this again and see if I can continue to see results. My new one month goals are to walk 3 miles at least three days a week.
I want to have planned weekly meals and I want to journal on a daily basis with a special focus on what foods I am eating, when I am eating them and what the effects those particular foods have on me. Do some foods cause me to be more fatigued? Do some foods cause me to crave sweets? etc.... I know my metobolic type is "mixed" so now I need to figure out what foods are going to work the best for me.
I'll tell you what...the other day rice krispie treats were on sale at the grocery store. 3 boxes (24 treats) for $5.00. I learned that this is a sale I will pass on the next time. I LOVE rice krispie treats and eating just one has been a challenge I have lost. There are no more rice krispie treats in the house...thank goodness.

I have to hop on a conference call now.
Thanks for checking in.
Kris

Tuesday and Friday of this week

2009-05-08T18:44:00.000-07:00

On Tuesday of this week I had a mammogram. I had one three years ago when I first got sick. At that time the doctors ordered every kind of test possible and sometimes they were done a couple times to ensure a solid baseline for any future tests. People with myositis and people who take some of the prescription drugs I have taken have a higher risk of certain kinds of cancers.
Anyway, on Tuesday, shortly after I got home, I received a call from the clinic that they wanted me to come back for more pictures and an ultrasound. There were some areas that they found questionable. I told Bill. We prayed. He did some internet surfing. I called my mom and dad and emailed my sisters. Although you can never have too many prayers, I didn't want to worry too many people and I was fearful of overreacting. I hoped that if I played it cool, it would be OK.

A friend of mine is a PA at Froedert in the breast care center so I looked her up on facebook and asked for some information and advise. I am going to share with you what she had to say so that if you or someone you love are ever faced with this second appointment, you might also feel better prepared. I told my friend Kimberly that in addition to being a church friend, I knew God had another purpose for our paths crossing. There are a few other very special things about Kimberly and her family that have God's handprints on them. We are blessed to know them.
Anyway, here is what she told me

As for the mammogram.... In young women, it is very common to get call backs due to the high density of breast tissue. When the radiologist sees dense breasts on mammogram, they like to get extra views - including compression views over those dense areas. If things do not flatten out, an ultasound is used to help locate any abnormal areas in that dense tissue. If they see something on ultrasound, they may want to do an ultrasound guided biopsy to determine exactly what it is (fibroadenoma, cyst, etc). Chances are, you may have a benign fibroadenoma or cyst that looks a little suspicious on the mammogram.
Things to ask, If they are having trouble with the density of the breasts, ask if an MRI would be helpful. MRI of the breast can give a better look in dense breast tissue. Be warned, that if they see things on MRI, the next step is second look ultasound and possible biopsy. If things get confusing, please feel free to call me
Where are you going for your mammograms? Remember, you usually have a choice where you can get things done, so if something doesn't seem right, ask for copies of your films and get a second opinion. Froedtert has a great breast care center that sees patients for any type of breast complaint. Anna Purdy, NP is usually your first contact and she is great! The radiologists are really good and trustworthy too. I don't want to put any other place down, I just know our department is good!
Hope that helps! I will keep you in my prayers! Let me know if you have more questions, OK? :)
Kimberly

Friday morning I was at the clinic for my follow up appointment at 8:10. After a few more compressions/pictures, I waited. The radiologist asked for the ultrasound. It was done and I waited. The doctor came in and said there was nothing to worry about. She did say that because I have a slightly higher risk that she would recommend having mammograms and MRI's rotated every six months and I agreed. By 9:15 I was on my way to work with a smile on my face and a weight off my shoulders and praise in my heart.

I think that's enough for one week.
Have a wonderful weekend.
Kris

Throw out fifty things....

2009-05-07T16:12:00.000-07:00

I've been reading a book called "Throw Out Fifty Things -Clear the Clutter, Find Your Life" by Gail Blanke
I haven't finish the book yet but it has already inspired me to clean out my dresser and closet and I have gotten rid of nearly everything that doesn't fit. Well almost...it's in the back of the van and will be dropped off by the end of the day tomorrow.
One page in particular (page 102) struck me as being very powerful and empowering. Here's what it says:
"For me, people who live solely on their laurels and accomplishments from the past are a yawn. I don't want to know how wonderful you were in high school or how you used to bicycle twenty miles a day. I want to know: What are you doing with your life today? Looking backward holds no charm for me. What's done is done. Learn from it and move on." ....."There is something to learn here: Whether you are-or were-a VIP or a regular Joe, let the old stuff go. How else will you have room and energy to reinvent and recreate yourself." "I like change and am ready for the next big adventure," Pat says, "which is how I see life- as a series of adventures."

OK, now not one of those above words are mine but I think there is a lot there. As I learn to create my life with Myositis I have been trying to measure my health by what I can and can not do.
Example: Before I got sick I enjoyed completing triathalons. I know I am better when I can participate in them again. Is that really going to be the measure?
Before I got sick I was a size 10. I know I am better when I am back in that shape. Really? I am three years older and my body has been through a lot. I have climbed a hypothetical mountain and I feel as though the top is within my reach.
That's the adventure...the hypothetical mountain.
When I get to the top. I promise you I will enjoy the view and prepare for the next big adventure. I will not go down the mountain the same way I went up or I would end up see everything over again and not something new.
Friends, look ahead. Enjoy the adventure.
Talk to you soon.
Kris

Acceptance

2009-04-22T14:50:00.000-07:00

Through all the ups and downs of the past few years I have met with a professional on occassion to help me cope. Her name is Rose and I met with her again this week and we talked about acceptance. Let me be very clear, acceptance does not mean giving up. It means trying daily to be OK with life as it is today.
I don't like how I look. It's a very hard thing to say outloud and it is a really hard way to live. She asked me to talk to myself as I would talk to a friend. It went something like this...
"Kris, I can't stand how I look. I am trying to eat right, exercise, make healthy choices and still I haven't lost a pound."
Now....what would I say to a friend.
"You are being too hard on yourself. Think of all you have been through. Is there something I can do to help?"
Did you hear that...by offering to help, am I telling my friend that I think she's right.

So many things came to mind during this talk we had.

I have often said that if someone calls me and wants to be sad or mad on the phone, they must know that I am going to offer them ideas and options. Bill has tried to tell me that sometimes people just want to vent, to let it out and have someone be on the receiving end. I've replied back...if that's true, then I am sure they have someone else they could call. By offering a solution, by trying to provide a brighter side or by making lemonade out of lemons what are my actions telling my friend. Guess what friends...I may have become a more compassionate listener today.

The other thing that came to mind when we met was that somewhere, sometime in my life I became goal oriented. I have a hard time going through a day or a week without a plan and if I don't have a plan I feel as though my actions have produced nothing. Nothing got done. On the flip side, I learned that if I have goals and I decide that I will keep working toward that goal no matter how long it takes, am I missing out on everyday joy because I am focused on the expected result?

So back to acceptance...each day I am trying to accept who I am today. I am going to continue to feed my body healthy things and I am going to move (exercise, activity, etc...), and I am going to give my body the rest it requires, and breath deep breathes from my belly and I am going to be grateful. If in my list of things I am grateful for a negative things comes to mind, I will write that down too and then follow it up with that negatives direct opposite. There is an outcome to all of this and it is beautiful.

More to follow...

He is Risen

2009-04-12T07:50:00.000-07:00

He is risen, indeed.

Alleluia!!!!!

37-40 and other updates

2009-04-07T12:28:00.000-07:00

37. Each night before you go to bed, complete the following statements: I am thankful
for __________. Today I accomplished _________.
38. Remember that you are too blessed to be stressed.
39. Enjoy the ride. Remember this is not Disney World and you certainly don't want a fast pass. You only have one ride through life, so make the most of it and enjoy the ride.
40. May your troubles be less. May your blessings be more. May nothing but happiness come through your door!

Well, there we go...40 ways to improve 2009. I hope you found one or two things that will be helpful to you. I wish you happiness, always.

and other updates -

I saw Dr. Cohen last week and we agreed that this is where we will stay. We are not going to try any new drug combinations. We are going to stick with the drug cocktail that I am taking right now. My disease is still simmering but that is better than boiling. I will still have to balance my activities and for now, I am going to love being active with my family and leave the races and finish lines for others. It is time to start teaching myself to measure success in ways that don't include a finish line or the right number on the scale. If I am only going to be satisfied when I get there, I am going to miss out on an amazing number of experiences and the joy, laughter and smiles that come with that.

One of my favorite quotes is "The real voyage of discovery consists not in seeking new landscapes but in having new eyes."- Marcel Proust

On Saturday afternoon I met a woman who has been diagnosed with polymyositis. It's been almost three years now and it finally felt OK to do this. Ginny and I met at the Cheesecake Factory and spent nearly three hours getting to know each other. I've had more experiences with doctors and prescriptions than Ginny has had so far and it was really nice to be able to share what I've learned and support her at this time. We met knowing that we had something in common (myositis) however, after just a few minutes I found out that Ginny knows my mother-in-law as their paths crossed while Pat was working for St. Johns in the activities area. Later in our conversation I found out that Ginny is good friends with Pastor Odden (the pastor that married Bill and I) and then I found out that Ginny goes to church with one of the men I work for. What a small, small world.
Here's how I got to know Ginny....
The Myositis Asscociation has support groups set up across the country called KIT groups. KIT stands for Keeping In Touch. Wisconsin did not have a KIT group and Ginny and I were both interested in attending a meeting so together we are going to get a group up and running in the state of Wisconsin. I have also signed up to be an ambassador for the Myositis Association. My responsibility will be to help/support someone who was recently diagnosed. It's a scary disease, and it's still scary for me but I certainly feel better about it now than I did three years ago.

New topic:
I have to tell you how my "gentle cleanse" turned out. I cheated on day 1 and nibbled on some ham while I was making dinner for the family and I ate a piece of Pizza Hut Pan Pizza that was in the refrigerator that day too. The rest of the week (until Saturday) I was doing great and feeling good. I was not feeling deprived. I didn't feel like I was missing anything and then came Saturday night. I ate movie theatre popcorn, took a bite of Jake's ice cream sandwich and from there I went downhill. And then came Sunday....OUT OF CONTROL. Once I admitted I was out of control I gave myself permission to stay there and enjoy the whole day that way. Guess what happened!!!! I got a giant zit on my chin. I ached more than I have ached in weeks and I did not feel good.
Monday I decided to start over again. Just like last time around, I cheated. I ate ice cream from the carton (it was Kopps Turtle Custard). Today, I feel stronger. It's 3:11 in the afternoon and I haven't cheated.

YIKES... I have to go and pick Emma up from school and take her to piano.
I'll write more later.
Thanks for checking in on me...
klb

32-36 and a few other things

2009-03-30T13:19:00.000-07:00

32. Envy is a waste of time. You already have all you need.
33. The best is yet to come.
34. No matter how you feel, get up, dress up, and show up.
35. Do the right thing!
36. Call your family often. (Or e-mail them to death!)

and here are a few other things...
Last night I decided that I wanted to really focus on only putting healthy, wonderful, whole foods into my body. My food coach refers to this as a "Gentle Cleanse" For the next 10 days or so I will do my best to avoid processed foods, sugar and artificial sweeteners, wheat, alcohol, processed meats, dairy products, coffee and caffeine and soy products.
YIKES...what's left?

Whole grains - including brown rice, millet and quinoa.
Vegetables and fruits
Nuts and seeds (without added salt)
Beans
Fish/Chicken
Eggs
Water and herbal teas.

I started this morning and I don't know if it's the "gentle cleanse" or what but I have a KICKING headache this afternoon. You know what I almost went for immediately to feel better...Food and not the choices I listed above.
I don't remember if I wrote about this the last time I did it but it was tough and in the end I felt so good, so empowered and in control that I believed I would do it at least once a month or so. If memory serves me correctly, that was last fall. How quickly I turned to what I was used to and what was comfortable and easy. It's OK to be out of your comfort zone, but it definitely takes some self motivation and pushing to do it. I hope to blog the "gentle cleanse" process over the next 10 days or so and document how I am feeling each day...the good, the bad and the ugly.
Today I had a mixture of raw walnuts and raisins, baby carrots and an avocado. For dinner, the carrots will be cooked and I am going to make some quinoa or brown rice add in some yummy spices and drink alot more water.
Well, I am off to check my cupboards, freezer and refrigerator so that I can make a list of what is missing to ensure that I have no excuses standing in the way of this goal.

A goal without a plan is just a dream.

40 is wonderful, flamingos and all...

2009-03-19T12:43:00.000-07:00

Hello friends and family,
Here are five more things to contemplate.

26. Forgive everyone for everything.
27. What other people think of you is none of your business.
29. However good or bad a situation is, it will change.
30. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
31. Get rid of anything that isn't useful, beautiful, or joyful.

Now, let me take just a few moments to tell you what a wonderful week I have had. As many of you know, I do my best to have a positive outlook, to take my days in stride and look at the glass half full. Turning 40 was something I was concerned about. If I could have turned forty a couple years ago when I was feeling my best, that would have been nice. However, that is not how it works and Thank God for that.
As many of you know, I did not want to have a party. I just wanted to turn forty in the quiet of my own home and process it in my own time. My wonderful husband respected that wish but also surprised me. My mailbox has been overflowing with notecards from family and friends and friends of family for a couple of days now. Thank goodness I was at home when I was reading all of them. I was in tears. Happy tears, joyful tears, laughing tears and tears of thanks for all of the wonderful people who have been and still are part of my life.
40 is wonderful.
Thank you to all of you who made it a wonderful day.
Love you all.
Kris

Sunday, March 8th

2009-03-08T12:53:00.000-07:00

I received a wonderful call from my friend Emily last night. It's been a very long time since we talked and it was so nice to talk to her. She was checking in and mentioned she was enjoying the top 40 things to make 2009 better. I promised her last night that I would get back to the computer and start typing.
Here are five more things to consider...
21. You don't have to win every argument. Agree to disagree.
22. Make peace with your past so it won't spoil the present.
23. Don't compare your life to others'. You have no idea what their journey is all about.
24. No one is in charge of your happiness except you.
25. Frame every so-called disaster with these words: 'In five years, will this matter?'

I had to smile when I saw number 21.
This morning Emma and I were getting ready for church. Jake's throwing up and has a fever and Bill is staying home with him because I teach Sunday school. Believe me, he is better with throw up than he would be with seven four year olds.
Anyway, every day I would love to see Emma's beautiful long hair pulled back (out of her face) but on Sunday's I expect it. We were on a roll, weeks have gone by and I haven't even had to ask. Then came this morning...she did not want to pull her hair back. I wasn't going to give in.
I gave in. She got in the car with her hair hanging in her face and I grumbled quietly to myself..."is it really worth it...should something so unimportant be so important to me, should I really have small tears of frustration on a Sunday morning?" Then I prayed that God would always give me the strength and patience to be a good mom. I asked him to guide my way and more importantly to be with Emma guiding her.
Shortly after getting in the car I had the pleasure of asking Emma what her memory work for Sunday School was. Lucky me, it was Colossians 3:20 "Children, obey your parents in everything, for this pleases the Lord"
No words were exchanged on that silent ride to church. When I parked the car and opened the door for her, there was a beautiful braid holding her hair away from her face. It's hard to explain how important that moment was for me.

Now, back to my call from Emily. I don't know about you but I think of my friends alot. I wonder how they are doing. I spend time feeling terrible that I missed their birthday or that I have allowed so much time to pass without calling or writing. Instead of using that to propel myself forward and make the call or write the note, I allow myself to get busy with the everyday things and then again, another day passes and I have not connected.
Another friend of mine mentioned that during the season of Lent she doesn't give something up, but instead choses to give. She made a commitment to write a note to at least one person she has been meaning to get in touch with every week during lent. I imagine that the people Beth gets in touch with this Lenten season will feel like I did yesterday when Emily called. It really meant a lot.

I need to sign off now and get some things done around the house, and write a note to a friend I have been meaning to get in touch with.
Thank you for checking in.
Kris B

Here come 10

2009-02-16T12:27:00.000-08:00

Poo...I missed a week. I don't know where last week went but here are the five things I missed sharing with you last week plus five from this week. For those of you who need to catch up, I am sharing a message I received from my sister regarding 40 tips for a better 2009.
Here are items 10-20.

11. Drink green tea and plenty of water. Eat blueberries, wild Alaskan salmon,
broccoli, almonds, & walnuts.
12. Try to make at least three people smile each day.
13. Clear clutter from your house, your car, your desk, and let new and
flowing energy into your life.
14. Don't waste your precious energy on gossip, or issues of the past, negative thoughts, or things you cannot control. Instead, invest your energy in the positive present moment.
15. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class, but the lessons
you learn will last a lifetime.
16. Eat breakfast like a king, lunch like a prince, and dinner like a college kid
with a maxed out charge card.
17. Smile and laugh more. It will keep the NEGATIVE BLUES away.
18. Life isn't fair, but it's still good.
19. Life is too short to waste time hating anyone.
20. Don't take yourself so seriously. No one else does.

A few things about my health. I am stable. The labs haven't changed enough to require any changes in medication. I am still coming along fine without taking any steroid medication. My doctor is comfortable with labs every 6 weeks instead of every 4 and she is scheduling me now to see her every three months instead of every two months.
This can be viewed two ways:
1) This is as good as it gets
2) This is good
Personally, I am going to chose number 2 however, that is sometimes a challenge. What is most difficult right now is the fatigue that greets me at the end of nearly every day. I move fairly well at work and even do OK now in the afternoon, but once late afternoon hits it takes quite a bit to keep me going. More often than not when Jake and Emma say their "good nights" I am saying mine too. This makes me sad mostly because I miss Bill and our time to talk and plan and dream together.
Bill's fine with this and we do have our days/evenings together. They are just fewer and possibly more cherished.

The next five...

2009-02-02T08:26:00.000-08:00

Here are five more ways to make 2009 one of the best years

6. Play more games and read more books than you did in 2008.

7. Make time to practice meditation and/or prayer. They provide us with daily fuel for our busy lives.

8. Spend time with people over the age of 70 and under the age of 6.

9. Dream more while you are awake.

10. Eat more foods that grow on trees and plants and eat less food that is manufactured IN plants.

Consider these things.
I will write more later this week.
klb

5 of 40

2009-01-26T16:42:00.001-08:00

I received a wonderful email from my sister recently.
It was titled "40 tips to a better life in 2009" I'm turning 40 in 2009 and I made a resolution to chose healthy living. This is certainly a wonderful guide for me to have.
Here are the first 5. I'd like to know you are coming back to see all 40 so I will do my best to post five every week for the next 8 weeks. This makes it easier to consider and implement if you are interested.
1. Take a 10-30 minute walk every day. And while you walk, smile.
It is the ultimate anti-depressant.
2. Sit in silence for at least 10 minutes each day.
3. Buy a DVR and tape your late night shows and get more sleep.
4. When you wake up in the morning complete the following statement,
'My purpose is to __________ today.'
5. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.

I'll be back soon. I need to use writing to figure out why I chose to try the coffee cake at work this morning, which was followed then by the two remaining Christmas cookies that I uncovered in the pantry, followed by a few shortbread cookies. The final sleeve was opened tonight and they didn't get put back into the freezer so I ate them. Now they are gone. No more temptation.
OK, I guess I am just going to keep on writing.
I have an addiction to sugar. The dessert kind... though it may also be the reason that one glass of wine isn't always enough. I know this yet I still made that stupid choice this morning to feed the temptation with homemade blueberry coffee cake.
I walked by it.
I resisted.
I went back to my desk and announced that it would be a hard thing to avoid and one coworker said "it's fantastic, I couldn't resist it." Another coworker said, "oh, I had to try it too but I only took a one inch square".
A one inch square, now there's an idea. There's a dumb idea for someone who knows how hard it is to stop once I have started. The one inch square was not enough. I went back three times for one inch squares.
Writing is a very strengthening exercise. By writing it down I am getting smarter as to how I will handle that challenge tomorrow, or maybe even later tonight. Write first, wait it out...and then decide if it's really the choice I want to make.
Thanks for checking in on my journey.
Kris B

Two in one day?

2009-01-22T16:08:00.000-08:00

Well, I know I miss writing and the fact that I am posting twice in one day is proof of that.

What else have I learned?
I learned that you can buy semi-sweet chocolate chips that are sweetened with grain instead of sugar. They are better than the ones we grew up with and for someone like me who has a sugar addiction, easier to keep under control.
I learned that if I start my day off with two large glasses of water, my body wants to drink more water all day long and eat less. This doesn't work if I eat first and drink the water second. I don't know why, but it's something new that I have learned by listening to my body and understanding how it reacts and response to what gets put inside.
Oh, the coolest thing....I learned that in the middle of a cold Wisconsin winter that there are WARM SALAD recipes to enjoy. This week I have had a new one every day of the week. No more regular old iceberg lettuce in our house. Yesterday it was spinach, today it was a rainbow chard, the other day bok choy...with some yummy roasted vegetables or nuts....it's a wonderful dinner on a freezing cold night. Added bonus is the yummy dressings that are homemade and EASY. If you come to the Barger house, you can count on a salad being on the menu. Not too worry about my family, they are still eating too. Bill is still the wonderful cook he has always been.
That's all for now.

Believing,
Kris