Bob Mack and his Mom....

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

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

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

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

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

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

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

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

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

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

Was the program a success? Yes.

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

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

Changing directions

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

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

A few really hard days...

Over the past two weeks I have had a few really hard days. I am guessing it's just my body adjusting to another change in prednisone but I also have a rash that I haven't had before. Today I decided to stop ignoring it and to call Dr. Cohen and report in. As you know, I have the type of myositis called dermatomyositis. Until now, I haven't had many skin issues. Many times individuals with dermatomyositis can get a rash and I believe I may have a "shawl rash". They call it this because it covers the same area a "shawl" would if you happen to have one wrapped around your shoulders. I've also been struggling with fatigue and moods. A good mood is a beautiful thing. A bad mood, a sad mood, and a frustrated mood are not. It is very hard for me to be anything but happy, at least on the outside. I know how many things I have to be thankful for. I know that there are many more people who's lives are presented with greater challenges but there are days, thankfully not many, when I say "why me". When I whine that I am sick of being sick and I want my old life back.
Writing is therapy...it's OK to have those feelings. It's even better when they don't take over days and weeks and months of your life.
The other day when I met with Rachel (my food coach), we talked about what we feed ourselves and she encouraged me to take a look at how much vitamin J I was getting. If 10% of my vitamin J comes from food, that's great. It means that 90% is coming from other things.
Vitamin J is joy.
I am making a list now of all the things that bring me joy and finding a way to fill up my days with it. It's just a start but the first thing I noticed was how neat it is to go for a walk for the purpose of joy.
Have a great day.
klb

Good Heart

This morning I had a follow up appointment with Dr. Zwicke, cardiologist. Although the appointment took longer than I had expected (2 1/2 hours), the outcome was worth the wait. Dr. Zwicke doesn't feel it is necessary to schedule further appointments. My heart is working well and the last echocardiogram showed improvement from two years ago. She has no concerns but will keep my file and records in a pending status in case a concern would come up in the future. Yeah. A good heart, that makes me happy.

Hello friends

Hello friends,
I am sorry it has been so long since I last logged in to give you an update. I guess the primary reason is that I have nothing new to report. Everything is the same.
I am now (knock on wood) down to seven mg of prednisone and on Sunday I will move to six.
The things I have noticed with this change is a weird temperature change in my finger tips. Sometimes they are really hot, burning and other times they feel cold and other times they throb a lot. Like the throb that happens after slamming it in a door or with a hammer. Not that extreme, not that painful, just a throbbing and aching that isn't normal. I can live with it.

I still meet with my food coach every two weeks. I haven't been on a scale so I can't say if I have lost any weight, but I can definitely say that I am living a healthier life. I'm learning a lot about whole foods vs. processed foods and I am learning about some things that I can do to give me "balance" in my life. I certainly can't work on everything at once, but at least I am learning how to make small changes that will have a big impact in time (Thank you Rachel)

The newest thing I got from Rachel is an article on morning journaling. As you all know, I enjoy putting my thoughts into words but Rachel has encouraged me to do this in the morning, before getting out of bed....with paper and a pen, not a keyboard. "The pen is a primal tool, connecting your hand to your mind." I have to be realistic. This will not happen on the mornings that I get up and walk at 5:30. Rather I will do it as a mind exercise for the days that I walk midday or in the evenings.
Speaking of walking, I am starting to think about walking attire for the winter. What is the best thing to wear on your feet if you are walking outside in the slush, snow or ice? Do you wear walking shoes or do you wear boots? For those winter walkers or runners, let me know your thoughts.
I want to make every effort to stay outside versus mall walking, rejoining a gym or working out to a DVD/Video. It really is beautiful even when the stars are still out in the morning, crazy.

That's about all for now. Thanks for checking in and being patient with my delay in posting anything.

Kris B

PULL OUT YOUR TSHIRTS

Pull out your tshirts, tomorrow is the day.

September 21st = National Myositis Awareness Day

Thank you for helping me raise awareness.

Sincerely,
Kris Lane Barger

National Myositis Awareness

Right now, as I type, doctors, patients, families, etc...are gathering in Denver, CO for the 15th annual myositis conference.
Many people were surprised that I didn't go to the conference. I will someday. At this time in my life, my vacation time and our vacation budget for family adventures seems much more enjoyable.

A couple of things happened since I last logged in:
My boss asked me to take on some additional responsibilities. I am now the Program Manager for the investment program at PyraMax Bank. As you can imagine the timing is quite exciting with all that is happening in the market. An annuity is still a great option for the right client. Call me if you want to meet to discuss this.

I had a couple of doctors appointments this week. My appointment with Dr. Cohen was typical. My numbers are not changing but there is an expected increase in White Blood Cell count which is typical with someone who is taking prednisone. At our appointment we talked seriously about what we should do next. Number one priority for me is getting off of Prednisone, for good.
With that being said she did say this might be as good as it gets and only time will tell. We certainly will try other things but only if it gets significantly worse. I guess that's a good and a bad thing.
Good deal, this is as good as it gets....move on. Make a plan that we can live with. Create a routine that works.
Bad deal...is this really as good as it gets? My greatest concern is my neck and arms. Both get very fatigued as the day goes on. My neck is the weakest part and honestly sometimes I wonder how I will keep it on my shoulders.
On Sunday I will move to 8mg of prednisone and then I will reduce it by 1 mg every two weeks.

I also received a call from the cardiologist that I saw a couple of years ago. Her records indicated the need for a follow up visit. I totally forgot I had a leaky valve. NO FREAKING OUT. Lots of people have leaking valves and lead a long and healthy life. The just found out about mine because of all the tests that were done early in the diagnosis process. I will see her in October or November.

Today I saw Dr. Sweeney. He is the doctor that gave me the homeopathic remedy. I was really excited to see him because I have a terrible cold right now (fever, cough, runny nose, sore throat, etc...). I had read about these remedies that work over night and that's what I was hoping for. No, I didn't get it.
Guess what he said? The fact that I have a cold is a very good sign of the remedy working. I haven't had a cold in the last couple of years. Isn't that ironic? He said that many people who have a disease or cancer never get a common cold. The body is too busy working on bigger things to bother with it. The fact that I have a cold is a clue to him that the remedy is working and he asked that I not take the pellets for a couple of weeks. He believes that the remedy, if I give it time, will continue to provide me energy for an extended period of time.

OK, this is getting long.

Don't forget to wear your tshirts this weekend, especially on Sunday, as that is the official, National Myositis Awarenss day.

This is the day...

"This is the day the Lord has made. We will rejoice and be glad in it."

I just received this lovely reminder from my counsins wife, Michelle, in a caringbridge entry she does for her son Nathaniel (who is doing wonderfully and enjoying kindergarten) Our God works in such amazing ways.
Today I needed the reminder. I am wiped out and feel like complaining, not rejoicing.
I added five hours to my work schedule on September 1st and with Labor Day in there, this is the first week I am actually doing it. I know it seems like a ridiculously small amount...an hour a day, but I am sure feeling it. I also reduced my prednisone by 1mg and believe it or not, that too can have a significant impact. I am determined to get off this drug and will take the wait and see approach. Bill reminded me this morning that the same thing happened when I went from 12 to 11 about a month ago and eventually I felt strong enough to reduce it again.

Three reasons to rejoice:
I have been walking one mile, two and now three days a week for a month.
Yesterday morning I was blessed with a beautiful sunrise during my early morning walk.
My children are healthy.

When you find yourself gloomy, write down three reasons to rejoice.
It's a great way to put the complaining and gloom behind you as well as being a wonderful reminder of how very blessed we are.

The Milwaukee Post

The Milwaukee Post published an article over the weekend on Myositis, my journey and campaign to raise awareness. So far, the best outcome of that was a phone call I received yesterday. I got a call at work from someone who read the article. He was diagnosed with Inclusive Body Myositis (IBM) back in 1990. At that time, he had to travel to the Mayo Clinic in Rochester, MN to undergo tests and receive his diagnosis. The doctor told him there was no treatment, and no cure. This would be something he would learn to live with and he would die with. I was pleased to share with him that research is being done, not enough, but certainly more than was in 1990. I told him about the Myositis Center at Johns Hopkins and the TMA website. All resources to give him more insight, information, support and even hope for a cure and/or effective treatment.
I am very glad he saw the article and reached out to talk with me. I hope others will as well.

Over the next week or so I will be working through the numbers to provide a final number on my fund raising efforts.
Again, please accept my thanks and appreciation for your continued thoughts and prayers.

August updates

Hi everyone,
August has been crazy busy trying to fit the little bit of summer we have left into the month. Our family has truly been gone for most of the month of August. Again, the good news is that I continue to feel good. I believe that the homeopathic remedy I am taking was most effective in the first two doses and a little less effective now but I am still very excited about the results.
I did not get to see my doctor that first week of August because she was on call and her schedule was running more than an hour behind but we have spoken on the phone and agreed to a couple of things.
I started to taper the prednisone again. This is a really slow process moving down by one mg over a two or three week period. I am at 11mg right now (not bad considering I was once at 80 and spent a long time between 40 and 20). The 10 mg has been the bump in the road for me in the past however the factors continue to change.

Since the last time I got down to 10 there are two major changes.
1) the homeopathic remedy
2) I am working with a food coach.

A few blog entries ago I shared with you that Bill and I were going to go to a cooking class titled "eating for energy". We both learned so much in those two short hours regarding the effects of different foods on your body (muscles, brain, immune system, etc...). I am now working with Rachel (Real Life Foods food coach) on a one on one basis every other week for six months. Slowly I am learning to listen to my body and the learn the effects different foods have on my body. The last two weeks I did a breakfast experiment. Did you know that what you eat for breakfast may result in a late night craving that day or the next?
Have you ever heard of Quinoa?
Did you know that an artificial sweetener is 400-600 times sweeter than a natural sweetener?
I am learning so much and starting to unravel some of the things I have been doing for years.
Rachel is a teacher, a confidante, a motivator and my accountability partner. She encourages me to set goals that I will succeed at and to slow down and take time to enjoy food....good food, real food. If you want to read more about Real Life Food, go to www.reallifefood.com
Well, the above is about "Choosing Health", the next part is about "Sharing your Experiences"...
A couple weeks ago after giving my Myositis presentation at work one of my coworkers called me and asked if I would be open to sharing my story with a journalist. Yesterday I talked to Lee from the Milwaukee Post and he interviewed me for an article on Myositis. If it all comes together it will be in the Saturday edition. I'll make sure I get a couple of copies for anyone who wants to see it.
Giving back holds within it some very powerful and healing qualities.

How can you give back?

Thank you for your continued support, encouragement, prayers and MILES.....
I appreciate YOU.

klb

Let's try that again...."Don't let Myositis Fence You In"

I was just going through my mail from the weekend and I have been asked to help with another Myositis event. A TMA member by the name of Lydia Vazquez donates a quilt to the Myositis Association each year and they in turn raffle it off.

I have 25 raffle tickets to sell and they are each $2.00.

It is a fence designed quilt with butterfly detailing. It's actually quite beautiful.
If you are interested in purchasing a raffle ticket or would like to pass the word on to others that might be interested that would be great.
Please email me at
wbarger@wi.rr.com or beemarket@gmail.com if you would like a ticket.

Thank you.
Kris B

"Don't Let Myositis Fence You In"

WOW...

WOW...
I just looked and I can't believe that the month of July is nearly over and I have been terrible keeping you up to date. I guess that might be what happens when energy comes back into your life and you can start doing more.
I am very pleased with the results of the homeopathic approach. I have an energy that I haven't had for years. I am still taking it slow but I am also really excited about being able to add more activity back into my life. The feeling is indescribeable.
My next appointment with Dr. Cohen is the first week of August and I am hoping that we will restart the process of tapering the prednisone again. That is always the true test.

Sneak peak....July miles to date are 318.3. I am completely overwhelmed by everyone's commitment to walking and excited to let you know that employer is holding a walking campaign and all the PyraMax Bank miles will be added to the trip to Denver. All the miles for July are precious to me but the ones that came from the "Just Bee" team that completed the Danskin Triathlon this year are really cool.
My friend Ruth from the Historic Third Ward Association, my mom, my sisters Beth and Vicki and my sister Beth's sister-in-law Neesa and her mother-in -law Devra all participated in the event, and all crossed the finish line. It was a really neat to cheer them on and it was inspiring beyond words to see all the participants. I am hopeful that I will be among the participants next year.

I am sure there is much more to tell but for now I must sign off.
Thank you my friends for catching up with me.

Kris B

Calcarea-carbonica

I decided yesterday that I was going to try the homeopathic approach to my disease versus the route of the trial drug study I had been considering. I got caught up on the word "chemotherapy" and just didn't want to have to try and get past it at this time. I want to be healthy. I will choose health.

The first step I took was signing Bill and I up for a cooking class:

"EATING FOR ENERGY "Wednesday, July 16th 5:30 to 7:00 PM, $29In this class, food coach Suzanne Monroe will focus on healthy cooking that provides lasting energy for hearty summer play. You'll learn about which specific foods to avoid, and which foods to eat for increased energy and stamina in these long summer
For more info, call 414.336.1111 or visit www.milwaukeepublicmarket.org

Not only did I sign up for the cooking class but Suzanne Monroe and I have a phone appointment tomorrow at 1:00 pm to discuss my health and see if she has any suggestions regarding nutrition and how what I ingest might help. If you google Suzane Monroe you will see that she has a site/business called reallifefood.com. More to follow on that.

So now what is calcarea-carbonica? It is what was on the five little tiny pellets I put under my tongue at 2:00 pm today. It is the remedy that Dr. Sweeney came up with to help the symptoms of my disease. Again, he emphasized and I will emphasize for you...this is not a cure, but there isn't a cure in traditional medicine either.
It is my hope that it will bring some energy back into my life. It is my hope that it will help curb the crashes that happen after I have a day of "normal" activity and "crash and burn" that happen the days that follow a fun filled weekend.
I am suppose to make notes of how I am feeling and then call Dr Sweeney back in two weeks and fill him in on the details. I will either take more of the remedy at that time or he will make an adjustment based on the feedback I am able to provide. I am excited about this new approach.

That's all for now.
Take care.
My quote for today: "Nurture Hope. Open your Mind."

klb

The weather must be getting better....

The weather must have improved because we nearly doubled our miles in the month of June.
Together we walked 488.89 miles to bring our combined total to......2647.6 miles as of June 30th. At this rate a 3rd person is going to be able to come along to Denver before the end of July. I will try and do a better job getting the miles communicated as I understand it is providing motivation to many of you and certainly to me as well.

I felt great last week. So great that I actually thought maybe I had turned the corner and remission must be right there within my reach. Guess what? I did it again. I rolled around in that good feeling like a happy puppy in the sunshine. I had energy and I used it and I loved it and this week, I feel like a truck hit me. Oh well, it was FUN while it lasted and it will come again.

Today, I caught up on a blog of a fellow myositis person. I was stunned to see that she had quickly slipped out of remission and was prescribed with chemo infusion. Guess what...it's the same drug, same procedure as the trial drug study I have been keeping my fingers crossed at participating in. No where in all the consent forms was this drug referenced as a chemo drug and by no means did the side effects sound as dreadful as the ones she experienced. So, I am going to forward her blog to the doctor that is heading up the study here at Froedert with a few more questions. I am not saying that I will not do it, but I am saying that I will be asking a few more direct questions before signing my name on the dotted line.

I'll talk to you all soon.
Thanks for checking in.
klb

Myositis Awareness is spreading....

The second round of tshirts has been received and most of them have been shipped out or personally delivered. I continue to receive really nice feedback from those that have seen them or worn them. I hope you are enjoying yours. If you don't have one but want one, you can still order until July 11th.

Saturday was a beautiful day at the Schlitz Audobon Center. 29 people joined Brownie Troop 1230 for a walk that allowed us to raise additional awarenss for Myositis and a few families said they would log their summer miles and email them to me. I think we are on our way to getting a number of people to Denver by the September Myositis Conference.

On Monday I gave a presentation to a number of my coworkers that were interested in learning more about Myositis. It truly is in the "giving back" that healing comes. This week (knock on wood) I have felt pretty good. Today was actually the third time this week that I have gone for a walk. Keep your fingers crossed (folded is probably a better word) that this continues. Maybe I won't feel bad enough to be the chosen "guinea pig" for the Rimstudy at Froedert. During the presentation on Monday, the Wellness director at our bank announced that the third quarter walking campaign for the American Heart Association would have a dual purpose...walking for AHA and the miles will be donated to my Myositis campaign. Two separate upcoming Fridays will be designated toward Myositis awareness. Any of my coworkers that buy my tshirt will be able to wear them to work on those two days. I am so blessed that life's journey lead me to PyraMax Bank. The support I receive is remarkable.

Milwaukee's Summerfest started today. The theme is "Get your smile on" Makes you want to smile, doesn't it.

Have a lovely day.
Kris B

To be or not to be...

To be or not to be a guinnea pig? That is the question.

On Friday I received the call I was hoping for. The Rimstudy at Froedert Hospital called to gather additional information from me. This doesn't mean I am the qualified participant that they are looking for but it does mean that they are considering me. I should receive in the mail today or tomorrow a consent package to review. Once I do that, I will call to set up an appointment which will likely be mid-July. They will do muscle strength tests and lab work to see if I qualify. Until then, I have made a commitment to keep my prescriptions all the same throughout the study. That means that the tapering of the prednisone has now ceased and I will remain at 12.5 until further notice.
Briefly, this is what I know about the study.
If they chose me, week one I will receive an infusion. The infusion is done at Froedert and it is preceeded by IV doses of Tylenol and Benadryl to offset any adverse side effects. The infusion will take six hours during which time I will be hooked up to monitors and be resting in a hospital bed. I might be a little tired because of the benadryl but that should be it. Week two, I will get another infusion (same as above). Then I will have weekly lab work done and a month later I will get another infusion, followed by another infusion the next week and then just monitoring via lab and muscle tests and possibly another muscle biopsy. She promised the muscle biopsy would not be as bad as the last one, which, if you don't recall absolutely sucked.
Two of the infusions will be the real thing, two of the infusions will be a placebo.

I will let you know when that leg of the journey begins.

This coming Saturday, Emma's Brownie troop has scheduled a family walk at the Audobon Nature Center. The girls will be walking and talking and in the end we will have more miles to add to the journey to Denver. I feel very blessed to have so many people supporting this Myositis Awareness campaign in so many different ways.

Well, that's all for now.
Thanks for checking in.
Make today WONDERFUL.

klb

Try this instead...

www.nationalcenterforhomeopathy.org

wrong link

www.nch.org doesn't appear to be the correct address.
When I figure it out I will let you know.
sorry.

Wednesday, June 4th

What an exciting day for doctor stuff to report...
Today I met with a family practice doctor that I was referred to by the Physical Therapist I have been working with.
He is a family practice doctor who also practice homeopathy. It was really a great interview for both of us. We both asked lots of questions and he will take the answers I provided and try to come up with a treatment plan. I believe I will hear back from him late this week or early next week. He gave me a book to read called "Catching Good Health with Homeopathic Medicine". I am reading it as fast as I can so that I have a better understanding of this approach. What is most appealing right from the get go is the total body approach (mind, body and spirit). Many of the meds I take are ones that offset the side effects of the other, etc... that has never felt right.
For more information on homeopathic medicine you can go to www.nch.org

Now the next exciting news happened later in the afternoon when my rheumatologist called me to give me my lab results. Some numbers are good, some numbers not so good. Not terrible but enough to be recognized as active disease. For this reason she asked my permission to send my medical records to a contact of hers at Froedert Hospital who is a central contact for an NIH study on the drug Rituxin. It would be an infusion treatment that takes about 5-7 hours in weeks one and nine. One infusion would be a placebo and one would be the Rituxin. All participants will get both the placebo and the Rituxin but we wouldn't know which infusion was what. She isn't certain they will chose me as a participant but feels it's worth a shot. For more information on the study you can go to www.rimstudy.org

I believe if they don't chose me for the rimstudy, than the homepathic approach is the way to go. If they do chose me, homepathic approach will still be an option down the road. Right now it just feels great to be heading in the direction of a new approach to better health.

Thanks for checking in.
klb

Miles as of May 31st....

Our combined total is now a BEAUTIFUL 2217.07.
Do you know what that means?
Well, we have now provided the miles for two people to get to Denver. We need about 915 miles to get the next person there. Keep walking and certainly feel free to tell someone else about Myositis and have them join our journey.
To do that, they simply have to email me (or add their miles to the comments area of the blog).
The email address I have set up for the awareness campaign is beemarket@gmail.com

Thanks for all your steps.

I appreciate you.

klb

105....

105 shirts.
I am thrilled to announce that a total of 105 shirts have been ordered. Included in that is the preliminary order that was submitted for a few family members so they could help me get the word out. Here's an email I received last week from my mother-in-law...

"Hi, Kris--I wore my new shirt when I went grocery shopping this morning, and a lady stopped me and told me that she thought the message on the back was just wonderful!!
Pat"

When you get your shirts and you have a chance to be "walking awareness" please share with me any comments you get. If they are good, and why wouldn't they be...I will post them here.

On Monday, June 23rd, I will be making a presentation at PyraMax Bank (my employer) to share information on Myositis. At that time I will have the opportunity to share the t-shirt campaign with my coworkers. I tell you this in case you find others that want to order, another order will be submitted in early July.

I saw the doctor last week. We made an adjustment to the way I will taper my prednisone so that I take it every day instead of every other. This is being done in hopes of not having so much down time/recovery from the zero dose day. The other thing that I wanted to share about this appointment was a new way to describe my disease.
She compared my disease activity to the white hot coals of a fire. They do not look hot but if you touched them you would get burned. In the same manner, my disease is still active. It does not look active but its effects are still there (for now).
The last two days I have had some increases in the pain/discomfort in my hips. Not sure if this is active disease, effects of lower doses of prednisone or something as simple as sleeping on a very hard surface while camping this past weekend. I'm not too excited about it but I am certainly not going to worry about it, just keeping an eye on things.

The last thing I wanted to share with you today is an exciting email I received from the Myositis Association. They forwarded an article about a high school athlete who competed recently in the state WIAA competion. She is from Green Bay and two years ago, after being diagnosed with Dermatomyositis was barely able to make it around the track.
Last week she was competing again. I put out a few emails today to see if she would be interested in campaigning with me and if we might be able to get a local awareness story in the media. Of course, I will keep you posted.

Take care...

Mile totals for May will follow in the next day or so. I want to make sure every gets a chance to get their miles in first. Oh yeah... I went for a walk this morning. :0) yeah!

Another blog I follow

I have been following another blog for the past month or so.
I believe I have mentioned to you in my own past blog entries how I am amazed at the quiet ways God comes to us to offer his comfort and wisdom.
The day I was introduced to this blog was the same day I was quietly remembering the day we lost our own little one. I'm still not sure if there is a right way to remember this little angel but I believe God sent me the introduction to this new blog to bring me quiet comfort that day through the amazing life of another little girl. Her name is Zoe and her life is impacting the lives of people around the world.

Here is her family's blogspot address: www.batiansila.blogspot.com

I read a quote there today that I want to share with you...

“It is always the simple things that change our lives. And these things never happen when you are looking for them to happen. Life will reveal answers at the pace life wishes to do so. You feel like running, but life is on a stroll. This is how God does things.”
-Donald Miller

klb

Tshirt Update

Good Morning and Happy Memorial Day.
As of this morning I have sold 68 tshirts. I will organize the spreadsheet and submit the order this week. I have another runner who will wear my shirt and help raise awareness. It's really quite exciting. My sister Beth did a great job putting together a brochure for me. I will send them along to you when I send the tshirts and thank you notes out. I am really feeling good about the success of the campaign so far.
Speaking of feeling good...I am not feeling so good these days. Not terrible but my muscles are achy and tired and I feel like I am needing to rest all the time. I believe it is part of the tapering of prednisone that is causing this and I am just going to hang in there because I am quite sick of this drug and it's side effects.

On Friday night I had a great conversation with a woman by the name of Sherry. She is young and also diagnosed with an autoimmune disease (Rheumatoid Arthritis). I was amazed that many of the symptoms she experiences and frustrations of the treatment are the same as what I have been experiencing. I also realized how important this kind of support and understanding is. The Myositis Association has a KIT group program (KIT stands for Keeping In Touch). Meeting with Sherry inspired me to prayerfully consider leading a group like this in Wisconsin. I have thought of it on occassion before but it wasn't until speaking face to face with Sherry and hearing her experiences that it really hit home how powerful and positive this could be. I will finish with the tshirt/awareness campaign before I take anything new on but will let you know if I decide this is what I am going to do next.
Thank you to everyone who continues to send miles to me. I am not adding many of my own these days which makes getting yours even more important to me. Keep them coming.
I wish you all a wonderful memorial day.

Thank you for your continued support and interest in my journey.
Sincerely,
Kris Lane

Miles to date....

In May I added some miles from my marathoning coworker and also added another person who is now training for the Chicago marathon, those two additions plus the continued efforts of my faithful weekly walkers has brought our total as of May 13th to 1993.57 miles. HOLY COW.

Over the past few days a couple people have asked why I want to continue to add walkers and miles now that we've made it to Denver.

Here's the reason....the more people I have emailing me their individual miles, the more people I know have been made aware of Myositis. Remember, this campaign is two-fold....research dollars and awareness. I am counting on a trickling sort of effect on many levels. Knowledge, Awareness, Research Dollars, Positive thinking followed by positive actions, etc.....

Feel free to ask your walking or biking partner to email miles to me as well. The journey is a long but beautiful one.

Have a great day.
Kris B

A few updates from the past week or so...

One of the most exciting things about the past week is the Physical Therapy. This is really a very different approach but so far I continue to feel GREAT at the end of each session. I have appointments scheduled on Tuesday and Fridays and the GREAT feeling lasts at least 24 hours. After last Fridays appointment I felt great until Sunday. When I evaluated everything I did when I felt GREAT, I realized that I didn't do such a good job at pacing myself. Pacing has become almost second nature to me but when I felt so good, I definitely wanted to make the most of it. I paid for it. The fatigue on Sunday, Monday and Tuesday was lousy. Now it's Tuesday evening and I feel really good after my PT today.

Another exciting thing...my employer is providing the opportunity for me to sell my myositis tshirts at work this summer, they will plan a casual day for the Friday before National Myositis Awareness day for people to wear the shirts to work and also provide a "Wellness Seminar" which will be a one hour presentation to employees of the bank. I will look for a professional to come in but if I am unable to find someone who has the time and is willing to talk for "free" then I will make the presentation myself. With that being said, I am open and actually hoping for your feedback. What have you learned by following this journey? What would you like to know more about? What's worth sharing again? Let me know if you have any thoughts on what would make a valuable presentation for my coworkers. You can either put it in the blog or you can email me directly at wbarger@wi.rr.com or my new email address that I set up for fundraising at beemarket@gmail.com . Thanks in advance for your thoughts on this subject.

OK, another exciting thing... Jake lost two teeth in one week and Emma competed in her first feis. A feis is an irish dance competition. She did a great job and received a third place medal.

Oh, it's getting close to bedtime for the kids so I better get going. I did want to mention how exciting it is to go to the mailbox everyday. I am on a roll and have received at least one order or donation every day for the past five days. What a blessing. I have had an inquiry from Long Island, NY and received order forms from MN, IL and WI so far. Keep the word out there and thank you for all your prayers, good thoughts, positive messages.
I really am blessed.

Good Night.
Kris B

Meg's Winter Relief

Here is the email I referenced in my last blog entry.
Isn't it wonderful to see the positive things going on to improve the well being of ourselves and others.


In August 2000, the waiting list for Sunrise Village, a homeless shelter here in Fremont, totaled 50 families. Because of that, the "Winter Relief" program was born, providing emergency winter shelter for the families in January 2001.
The waiting list has continued to grow each year, and now five area churches have continued to help meet the needs of these families by providing food, sleeping sites, transportation, programs for the kids, and more.
To continue assistance to the families in need, on April 26, 2008, St. James’ Episcopal Church in Fremont is joining with St. Anne's to hold our annual Walka-Rocka-thon to benefit the Winter Relief program.
This year, we’re in for a 7-mile trek across Fremont, while others will spend time "rocking" in chairs, all with the goal of raising funds for the program.
This effort directly raises money to purchase items such as bus tickets, toiletries, and grocery & department store gift cards for the families. No middle-men!
Can you help? I’ll be walking bright and early, and any donation is appreciated. And if you're unable to donate, even simple words of support are treasured, and we all thank you for your good wishes. (This is the ultimate soft-sell, no obligation message!)
Thank you again for considering, from the Walkers and the Rockers and those who benefit :)
Meg Williams
3621 Kay Ct.
Fremont, CA 94538
========================
If you are able to assist financially, you may email me and send your donation later, or simply mail it to
me: checks may be made out to St. James Episcopal Church, with "Winter Relief" in the memo line. My address (for mailing) is above, if needed.
Your cancelled check can be used for tax purposes, and a tax ID number can be provided if necessary. If you need more information on the program, be sure to let me know.

Denver, alone....

Denver, alone...now that doesn't sound like much fun. Don't you think we should see how many people we can get there. Bill should be able to come along for sure, right? What if we could log enough miles for all contributors to go along? I am going to be starting to add the miles of my marathoning coworker and I might get a few more runners on board so it is possible. ANYTHING IS POSSIBLE.

I put this out there because not only are we adding the following people to my list of walkers, runners and bikers

WELCOME:
Auntie Susie
Laurie and Scott Thompson
Beth Weseman
My Mom
My Dad
Sandra Gonzalez
and the 21 people that walked with Meg Williams in the Walk-Rock-athon this past week-end.
(The next blog entry will be the email I received from Meg regarding this event. When you see something wonderful going on to better the lives of our neighbors it should be shared, right?)

OK, OK, back to where I was about to make a big announcement.
Not only are we adding the above people BUT as of today we are at 1345.07 miles logged. I got to Denver.

THANK YOU !!!!!!!

Don't stop walking, don't stop reporting your miles to me. YOU INSPIRE ME. On days that I am feeling good, you inspire me to get outside and walk. On days that I am not feeling so good I think of crazy goals related to this FUNDRAISING AND AWARENESS.
Starting today, I am going to try and match every mile walked with a dollar toward Myositis Research. That means I am going to have to sell ALOT of tshirts and raise ALOT of awareness and I am counting on you for that too.

When you receive your tshirt you will also receive a flyer that tells you what to say if someone asks "What's MYOSITIS"
If someone receives the email regarding my campaign and says "so how can I help"
The goal is raising awareness and money for research (buying and wearing a tshirt does both). If you happen to have a job or networking circle that offers sponsorships and things of that nature....money and exposure is a good thing too.

Thank you again for all your support and encouragement and MILES.

The M in Myositis stands for "Make every moment count."

klb

PT update

Hello,
I just thought I would let you know that my second PT appointment was this afternoon. I'm weirded out because I feel great. Really, really good. I feel energized and happy and unstoppable and calm. I called Bill right away to share the news and then proceeded to tell him I was wondering what happened in there.
Honestly I spent an hour breathing, thinking, eyes closed, relaxed, the PT was busy doing the muscle stuff for me (arms, legs, head, neck, back, etc...) and when I left I didn't feel exhausted or sore or frustrated.
Bill quickly reminded me how wonderful it is that I have an open mind to an alternative/complimentary approach and to just enjoy the ride and not ruin it by thinking it about it too much.
Well, I just had to tell you I went from not feeling very good today to feeling great and I am going to keep practicing my breathing to see how long I can make this ride last.

I fell away from the quote's for awhile. Today I will share the last line of my myositis t-shirt.
Sovereignty = God is in control of everything.

klb

a weeks worth of updates...

Hello and thanks for checking in. I am sorry that I haven't posted for so long, no excuses...so let's get to it.
I am on the new medication now. I have noticed no improvements, yet. We must be reminded that it is a gradual process, I am not up to a full dose yet, and it could be many weeks before the effects present themselves.

I met with a new physical therapist. It is a new approach to treatment but my mind is open to what it has to offer. The first meeting she taught me the importance of breathing, diaphragmatic breathing. Here is a little snip it from a handout she gave me regarding this:
"For a moment, think of the word "stress" as any stimulus that engages us in life such as eating, bathing, working and socializing. When we perceive a situation or thought as threatening in any way, it can become dis-stressing, In these moments or over time, our breath can adapt to cope with the distress. We often adopt a "survival" breathing pattern, where we use little of our diaphragm muscle and mostly upper chest, shoulder and neck muscles. This pattern will continue to limit the movement of the primary breathing muscle, the diaphragm and create tightness and exhaustion in the muscles in our upper body. Over time this will limit our oxygen intake, create excess muscular tension and compromise our immune system."
I have physical therapy scheduled twice a week over the next six weeks. I will keep you posted on the outcome of this new approach.

Last week I had a great meeting with my boss. Near the end of the meeting I was telling her that we were coming up on the two year mark of my diagnosis and how I continue to try and figure out what my "new normal" will be and she helped me tremendously by asking me to take the same approach with my health that I take in my work. In my work, I don't try and figure it all out before I get started, I just start. I tweak and adjust along the way but keep moving forward. She suggested I try that with my life outside of work. Stop trying to figure out the disease. Just live and tweak and adjust along the way but keep moving forward. I'm taking her advise.

Many of you probably received my email regarding my myositis t-shirt campaign. I kicked that off last night by sending an email to virtually everyone in my email distribution with the hope that it will be forwarded around the world and people will be wearing myositis shirts and raising awareness. Thank you in advance for your help with this effort. I am also looking forward to sharing this campaign with the congregation at Our Savior in Whitefish Bay, my coworkers at PyraMax Bank and my Saturday morning weight watchers group. These presentations will be in person so wish me luck on that.

What else did I want to tell you....
I am reading "A New Earth" by Ekhardt Tolle. It's very heavy reading. I struggled in the beginning to keep reading but as I get nearer to the end I am having a hard time putting it down. It's about living in the "Now". It's about being present and not letting the past or the future rob you of this moment. Just yesterday I read the powerful word's "this too shall pass" and although I always used that as comfort in a bad situation the reality is it belongs to every moment, even the good ones. Take each moment, learn from it and move with courage and confidence into the next moment. The book encourages it's readers to say the words "I am."
Did you notice there is not a blank to be filled in? Not, I am a mom. Not, I am a wife or a daughter or a sister or a manager or anything else....just "I am" You can't go wrong.
I am obviously not the author. I would however encourage you to read the book regardless of what I just said in the above paragraph. Somethings just can't be explained.

Today, I did not go to work. I struggle with that. I love what I do. I enjoy being there and I feel as though I am making a contribution. When I can't go, I feel defeated. I feel like I am letting the disease get the best of me. Now, if I take the advise of my boss and keep moving forward it's OK that I need today to rest. If I take the words of the book, this is just a moment...a moment to be lived, enjoyed and appreciated, "this too shall pass".


I am going to sign off now. I should rest and practice my diaphragmatic breathing.
Have a wonderful day.
Kris B

Just when everything was going well...

Just when I was feeling really good I get slammed. I was sitting at work today and I felt a tightening in my neck and then my shoulders and then it actually felt like it was taken conscious effort to keep my head up on my shoulders. This may be a slight exageration but honestly, not a half hour before this happened I was telling a co worker how much better I had been feeling since dropping the "chemo" drugs and starting this new one.
I didn't let it progress too far before I decided to leave work to rest. So what am I doing now....going to rest, going to feel better.
I'll keep you posted.
klb

921.95

921.95 - That's the number of miles we have covered together as of today.
This is amazing. It's only April 14th. I am starting to think that we are going to have enough time and enough team members committed to this journey to get us back to Bayside once we reach our Destination Denver.
A special thanks to the following people who have reported numbers in to this cross country journey:
Uncle Dave Luebke
Pat Barger
Meg Williams
Vicki Luebke
Janet Garcia
Emma Barger
Bill Barger
Jake Barger
Beth Siebert
Steve Siebert
Pat Murphy
Chris Murphy
Kyle Murphy
Aly Murphy
Nate Spaeth
Angie Spaeth
Erik Halling
Others are walking and keeping track of their miles for me but I don't have them on my spreadsheet yet (my parents, a few cousins, some people at work....). Do you think we can grow this list of 17 to 50? I do.
Tell a friend. By including others in this journey you are helping me raise awareness for Myositis. You can add miles to the blog in the comment area or you can email them to me and I will add them to my spreadsheet. My email address is wbarger@wi.rr.com . Thank you, thank you.
klb

It's all good....

It's all good....
I have not taken a chemotherapy drug (azathioprine or methotrexate) since April 3rd and started the new cellcept drug just four days ago. There is something to be said about being free of those drugs that carry with them something negative. They have scary names and they are used to treat very sick people and not taking them actually makes me feel better, physically and mentally.
By the end of this week I will be posting information on my fund raising/awareness campaign for Myositis. I will use my blog to provide updates on the campaign efforts and email to send out the order forms and pledge documents. I am counting on all of you to help get the word out. You have been a tremendous support for me.
Thank you.

Here's a lovely quote from Oprah's Mission Calendar email I receive...

"Lavish [love] on others, receive it gratefully when it come to you. Cultivate friendship like a garden. It is the best love of all." -- Sister Helen Prejean

Thumbs up...

I received a call from Dr. Cohen today. Thumbs up, the lab numbers look good and so did the xray. Tonight I take my first dose of Cellcept.

Last night Jake and I walked a mile. He zoomed on his big wheel and I screamed how many driveways he could be ahead of me before he had to stop and wait for me to catch up. He was a good listener but those big wheels are loud and fast.

We have a big addition to our miles to Denver, the Murphy family has added 183 miles and from what I heard, many of those came from the beautiful beaches in Florida as well as their daughter Aly's diligence in wearing her pedometer. Way to go Aly. Thank you, thank you.

I have to bump over to my miles tracker and I will log back in later with an update of how far we have left to go.

Two walkers and a marathon runner asked if they could add their miles to the journey. Of course I said yes but I am going to keep the marathon numbers under cover until we get closer to our destination. I don't want anyone losing motivation thinking that the runner will carry us.

Thanks for hanging in there with me.
We are coming up on the two year mark and I was really hoping to have kicked this disease into remission by now. Please say a prayer with me that cellcept is the answer.

klb

710.45 miles to go

I just added up our miles and we are doing great. If we average just over 4 miles a day as a team we will get there by the beginning of the Annual Conference and I happen to know that there are people holding on to their numbers and reporting them in monthly so I imagine this will change dramatically once those numbers are included.

Keep those shoes laced up, warm and walking.

Thank you.
Kris Lane

a couple updates...

On Tuesday, April 1st I was inspired by it being the first day of a brand new month, the sun was shining and the daylight hours are longer....I walked to the voting location after dinner (about a mile). It felt great. Granted I had to slow down my pace a couple of times and I was freezing cold by the time I got home but all was good.
Yesterday, about 4:00 PM my legs started to ache. During dinner I had a hard time being comfortable, by 7:00 I was laying in bed. I took the medication that I have on hand for this type of thing and then was awake most of the night. Thankfully by 10 PM or so my legs didn't hurt anymore but the medicine wired me up. I finished a book and started another one and before I knew it the alarm clock was going off announcing to me a brand new day.

Today, my legs don't hurt at all.

My appointment with Dr. Cohen went well. We are starting down a new path today. No more Methotrexate and no more Imuran but still 20 mgs of prednisone with a plan to taper over the next 12 weeks down to 5 mg every other day. In a week, once the two immunosuppressive drugs are out of my blood (it takes much longer for it to leave the muscle) I will start on a new drug called Cellcept. It will take a number of weeks for me to work my way up to a full strength dose and possibly a couple of months for me to see and feel it's effectiveness but I am thrilled to be trying something new and the thought of no more needles on the weekends is THRILLING.
I did have a chest xray done as well as routine lab work and will let you know if there is anything worth reporting once I get the results back.

Thanks for checking in.

klb

We're back

We're back from a beautiful vacation in Arizona. While I was gone a number of people reported in their miles. We are adding 57 miles to our journey to Denver. OUTSTANDING. One morning in Arizona Emma joined Grandma Luebke for 1.5 mile walk and they were lucky enough to cross paths with a desert coyote. A memory both of them will cherish I am sure.

A quick health update....
I was a little concerned about heat and sun exposure and how that might effect me. Turns out it didn't effect me at all except to brighten my spirits and take a bit of the pastey white skin away.
Sunshine, everyday.....wow. It was awesome.
On Thursday I have a follow up appointment to see Dr. Cohen. I am still taking 20mg of prednisone and will look to begin the tapering process again with this next visit. It really does make me feel better, though I can not stand the side effects (cravings that are very difficult to get under control and the weight control issues that go with it). I'm sticking with Weight Watchers and although the pounds aren't flying off, thankfully they aren't flying on either.

A update on the tshirt fund raiser....
I am working with my sister-in-law, Meg on the tshirt design and hope to have things finalized by the end of April. At that time I will distribute order forms. Rather than order a large supply upfront and take the chance of having an overflow of inventory, I am going to order what people want. More to follow on that....

Thanks again for checking in.
klb

Quote for the day:

"Happiness depends.../ Less on exterior things than most suppose." -- William Cowper

Fatigue Follow up....

Isn't it amazing how God puts the right people in our lives and then out of nowhere gives them the right words and the right timing.
I just received this prayer from my friend Jan. I opened the email just moments after I wrote the last blog entry.
Fatigue...God's way of making sure I am exactly where I am meant to be.
Thank you Jan.

klb


"May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are treasured by God. Let God’s presence 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."

Fatigue...

Can you think of anything good about fatigue? I am struggling to find the positve here but am fairly certain that if I write about it someone out there might have something to say or just the therapy of writing will get me there.
There is a difference between fatigue and tired. Fatigue is having to sit down after blowing my hairdry just to gather up enough energy to do the next thing necessary to get ready for the day.
Fatigue is the feeling I have sometimes when I am at the bottom of the stairs wondering if I really need whatever I was headed for or if it can wait. Fatigue is when I can't convince myself that it would be easier to stop at the store right when I am driving by instead of thinking if I go home and lay down for 20 minutes I will feel so much better.
Fatigue is the reason I called the doctor last week Friday and continued to be persistant so that I could see her before we go on our family vacation to Arizona next week.
I saw the doctor today. The strength tests that she does each time I see her were repeated again today and I am showing signs of weakness. I also have this crazy cycle going on...I am not sleeping well because I can't get comfortable. Not being comfortable/not sleeping impacts the level of fatigue I am experiencing. The level of fatigue I am experiencing is keeping me from exercise. Not exercising is not good for my mind or my body.
I might try Yoga again but I am really hoping I can find a DVD to do at home. I need something "gentle" and although I just celebrated a birthday, I don't feel as though I am ready to be outexercised by a "senior version" I was not comfortable doing this in a group setting. I would also be interested in trying thai chi. I think Meg has written on occassion of using that. Meg, if you have a DVD recommendation for that I would be open to exploring it further.
Back to the doctor appointment. After much discussion it was determined that I would bump up my prednisone from 5mg to 20mg to get me comfortable again and then we will taper it down to 10mg. Although I hope that's not the final answer, many people need that much to keep the disease under control. She added a new prescription called "Flexeril" that is suppose to help the muscular/skeletal symptoms (possibly fibromyalgia) which is not a disease but a condition that might be a part of the cycle mentioned above.
I will see Dr. Cohen again when I get back from AZ and we will have new discussions regarding changes in the big medications. Will we give up on the Imuran and Methotrexate combination in hopes of better results with cellcept?
OK, that's it. Although I don't feel any better regarding fatigue, I do feel better having talked to you.
Keep walking and I'll keep smiling.

klb

What a week...

It's been quite a week or two...
Last week I got caught up in the excitement of helping to open a new branch of PyraMax Bank.
It's a beautiful new office in West Allis, with wonderful people and it reminded me a lot of what it was like when we opened the branch in the Third Ward. WOW, a lot has happened since than and it's a powerful reminder that there is someone else in the drivers seat of our lives.

This week I had the opportunity to travel to North Carolina for a business trip. It was a trip I walked away from inspired and excited to make a difference with the investment program at the bank. As you know, I have been forced to take advantage of the resources around me in my personal life and this trip showed me that I can do that in my business life as well. There are many people who want to help and some that are even paid to. Asking for help, not an easy thing but many times, the right thing.

On this trip I also found out that I sleep much better at home where the people I love are close by. I came to realize that a six hour work day is not something I can handle physically at this time. I had to dismiss myself from the meeting on Wednesday after six hours and that was a good thing. Although I was engaged and learning and enjoying the time, my body was telling me enough is enough.
Speaking of enough is enough, I took the pressure off of myself to cross 1044 miles individually before the conference in September. I am going to accept the help and encouragement of all of you and use your miles to help me get there. Secretly I was tracking my own but then when I figured out how much I would have to walk each week, I stopped walking entirely. The goal become overwhelming.
Since I last reported our miles, we have added 48.41 to our totals.
Thank you for all your help. Spring is right around the corner and I don't know about you but I am looking forward to walking outside again.
Talk to you soon.
Thank you very much for checking in with me.
Kris Lane

Lab update

After days of voicemail tag I heard from the doctor. My lab numbers continue to have "moderate changes" indicating an increase in inflammation. She does not want to make any changes to my medications until she is able to do a physical evaluation. My next appointment is the first week of April so I will know more than.
This week wiped me out. I believe it has now been three weeks since I have been to the gym. Thankfully we "spring ahead" this weekend. When the temps get over 35 degrees I will start to walk outside again. I already have a one mile and a two mile walk measured out. I am starting to worry a little bit because at this rate (with the three weeks away from the gym) I now need to go about 35 miles a week to get to Denver. YIKES. I hope I start feeling stronger one of these days very soon. If not, let me tell you again how glad I am to have you walking with me.
I didn't want to go there alone anyway.
This week I was working with some people for the first time. One of them commented, "I wish I could have your hours". That really grabbed at my heart. I wanted to say, "Yeah, well I didn't chose this." or "You have no idea how much I love my work and how hard it is for me to leave when I feel needed and on the edge of success"
A "new normal"....I'm still working on this. I am stumped though. I will continue to pray about it and one day, I know it will be right there in front of me.

I appreciate being able to document this journey and share this experience with you.
Thank you.
Kris

227.74

Last week 18.5 miles were logged toward our "trip" to Denver. That brings our total to 227.74 and just 816.36 miles to go. I am starting to think through a walking event that I hope you and all your family and friends will be able to participate in. Without giving any more information (because I haven't figured it out yet) you will need to travel no further than out your front door.
More on that to come.

Yesterday (Sunday) I was just dragging. Bill gave me a "pass" from going to church but I told him I didn't want to miss church and if I was still wiped out after the service he could bring me home and I would rest the remainder of the day. When he offered to drop me off in front of church, I accepted graciously. (you know, that space is reserved for the old people to get dropped off but that's about how I felt...39 is just around the corner)
Anyway, what a sermon. It may have been written just for me, or at least that's how I felt.
The story was that of the blind man. The disciples asked Jesus "Who sinned, the man or his parents that he would be blind?" "Neither this man nor his parents sinned," Jesus replied."but this happened so that the work of God might be displayed in his life." WOW. That got me thinking. What can I do so that the work of God can be displayed through my life?
The other wonderful part of being in chuch on Sunday was seeing Deb. Deb is one of the first people I remember meeting when I came to Our Savior Lutheran Church. She is so friendly and welcoming and genuine. It's been a while since we have seen Deb. She is battling cancer and the illness and the compromised immune system has kept her from worshipping with us. She was there today and I could just hear "This Little Light of Mine...I'm gonna let her shine." as she walked down from the communion rail. I know you all pray for me, could I ask you please to add Deb to those prayers. Thank you.
I am still waiting on the results of the last lab visit. I am curious to see if it will be reflective of how I am feeling. My neck and arms (upper) tire easily and the last few days I have felt like staying in bed with the covers pulled over my head.
I remind myself that this too shall pass.

The last quote I gave you was ....
"You Can..." and you were suppose to fill in the blank.
My blank was filled with "Overcome any Obstacle" and I can.

Thank you for caring.
Thank you for checking in.
Kris B

Did another week pass by...

Did another week pass by already? So sorry. I know you look here to see how I am doing and then I don't even bother to comment. I will try and do a better job.
First things first.
For the week of February 17-23: 86.04miles were reported into me. I confess that only a 1/4 of a mile was mine so again I must thank you for carrying me. I better step it up or I am going to have 10 mile days in front of me pretty soon.

Even though I have only been to the gym twice in the past two weeks, I have continued to go to WW and have losses on the books both weeks. Don't get too excited, I still haven't hit that first 5 pounds but I am going to. Just like I am going to walk 1044 miles. I really believe I can do it.

Yesterday I had a bit of a reality check. A reminder that somehow, someday, I need to get OK with having a "New Normal". That's a hard concept really. I know it's something I can create and although I once believed my actions controlled my destiny, I know better now. Actions create results and/or consequences but God is in control of what tomorrow will bring and I just need to trust in Him.

Today I had my monthly lab work done. I will let you know the results when I get that call from Dr. Cohen. My next appointment with her is the first week of April. I don't believe I will be switched to the Cellcept before that. Today when I asked her about it again I found myself thinking how terrible it feels to be on the receiving end of an "I told you so..." and decided that I am going to be patient with regards to this change.
Another thing that might be of interest to you....my average last week for "How do I feel" came out to be 4.75. I had two days of "6's", and Thursday and Friday were both low number days 2.25 and 3 respectively.

Today I leave you with this thought,

You Can....
(fill in the rest with something important to you).

I can hear it now... Bill saying "OK, you sound like Oprah?" Said with a smile and endearment in his voice :0)

Thank you for checking in.
Talk to you soon.
Kris B

The week of February 10th

The week of February 10th we walked 22.15 miles. Welcome Beth and Vicki, so glad to have your miles.

Onward....

Thank you.

Kris B

A week's worth of updates in one entry

Sorry for dropping the ball last week. Believe me, I thought of you often but my mind and energy were wrapped up in how I am going to use my diagnosis with Myositis to make a difference in someone else's life. I've written letters to three women who have inspired me along the way and hope that one of them might be able to share what they learned about fundraising so that I am not reinventing the wheel. Don't worry, the walking is going to continue and I am going to trek 1044 miles (as are you) but I am fairly certain I am going to sell tshirts too. I am waiting to hear back from the Myosistis Association with permission to use their logo. 100% of the profits will go toward my fundraising campaign. Did I happen to mention I'm shooting for a $10,000 goal now instead of $1044.00 For those of you who have already made a cash donation, I will send you a tshirt hot off the presses as my thank you. For those of you wondering how you can help....I will be selling tshirts for $25.00. You can buy one and wear it everywhere. In so doing, you will be helping me raise awareness and money for research. I also think the back of the tshirt is very inspiring so along with awareness and money for research you will be INSPIRING without having to say a word. The most cost effective way to do this (and raise the most money) would be to take orders (and payment) and then place the order once I have enough to offer a cost break.

OK, enough about that for now.

Here is an update of things I wanted to tell you last week:
Last Saturday night around 7:00 PM I went upstairs to give myself the first half of my methotrexate for the weekend. I took a syringe from the bag and it was HUGE. The needle was nearly three inches long and the barrel was the size of a sharpie marker. No thank you....after a moment of consideration and Bill suggesting that maybe I should just inject it half way in I decided I would pass and take my changes with a full dose the following day. In church on Sunday Emma snuggled in next to me and commented that I wasn't hot and sweaty. We both enjoyed that close moment and it only made it more special sharing it in church.
Sunday afternoon we took a family trip to Cabella's. The moment never to be forgotten from this adventure was Jake's overwhelming excitement over the fishing area. He loves fishing so you can imagine how the aquarium and the rows and rows of fishing poles and lures was amazing to him. Down one row he commented to us : "WOW this is paradise..." down another row a few minutes later he said "Mom, this must be a fisherman's heaven." Every day since then he has asked Bill when they could go back to "that store". Saturday they made the trip again and Jake has added yet another lure to his fishing box.
Wednesday morning we were met with a scare when Jake woke up and was crying because his legs hurt him so bad. He couldn't stand at the side of the bed and came down the stairs (because I can't carry him) on his bottom. You can only imagine how scared I was that one of my children could have this same muscle disease. I was terrified. Jake is fine. He did have sore legs for many days after that but it was actually a symptom of the virus that he was sick with the week before. A number of other children in his class and after school care program had the same leg aches. THANK YOU GOD.
Thursday afternoon Emma amazed me at swimming lessons. I usually spend that 40 minutes working out but this past Thursday I didn't have the energy. My little Emma bean swam nearly a mile. After class she told me she was exhausted but asked me if I would add that mile to my blog. My sweet girl....she is tracking miles for her mom. I AM BLESSED.
One last thing...Bill and I met with someone last week and before our meeting started he asked if he could share a prayer with us. It was very simple:

"Dear God, please give me the patience to tread water until I am strong enough to swim."
Isn't that just wonderfully simple. I can't tell you how many times I thought about that since last Monday but I can tell I wasn't in the pool. I applied it and shared it with others when the opportunity presented itself.

I've got to go. Tonight is BUNKO night with the ladies and I have dinner to start.

Thanks again for checking in. I will send out a mileage update for last week shortly.

Kris Lane

Make the most of every moment.

YIPPEE...we broke 100 and you carried me this week

I just added up the miles since January 1st and we are at 101.05. That means we have just 943.05 miles to go. I had to listen to my body this week and take a break from the WAC. After adding up the combined miles though I am inspired to get back there. It's important for me to remember (and you too) that it's one step at a time. If I can only walk for five minutes it still counts and it's still getting me closer to Denver.

When I was resting this afternoon my mind was spinning with all the different ways and the many groups of people I could work with to raise money and awareness for Myositis.
Should I plan a walk/run for Myositis? Possibly a 5K through Bayside? or should I have cool t-shirts made that people could make a donation to purchase and then wear while they are walking or running to Denver with me? I am, of course, way out of my league on this but again, if you have any ideas or know any talented people who have done this kind of thing before, let me know.

It is so much nicer to focus on something GRAND than the everyday yuck that comes with this disease.

Thanks for hanging in there with me the last couple of days while I was offering less than positive words.

If you find yourself in a bookstore, please look for the book "The Pig of Happiness" by Edward Monkton. I received a copy of it in the mail this week from my sister-in-law Meg and it makes me smile. You will smile too, I promise.

Good Night.
Kris

It's Friday

It's Friday and we had Parent Teacher conferences this morning. Wonderful words were shared about our dear Jake and Emma and the progress in their respective classrooms.
Jake continues to be sick and this afternoon went back to see Dr. Paley. Double ear infection. Poor thing. He really feels lousy.
I took a very long nap this afternoon. I am hoping that perks me up for a productive and enjoyable weekend.
Bill continues to keep the house floating. He often says he wishes there was something he could do to make me feel better. He is amazing. He can work successfully from home and juggle the family taxi service to dance class, do the laundry, make the meals, shovel the driveway (over and over and over again) pick up the prescriptions and calmly and supportively tell me how important it is for me to rest when my body tells me to. He assures me that he and the kids understand.
It's hard though.
More to follow tomorrow. I'll add up the miles and report them to everyone on Saturday.

Good Night.
Kris

Fatigue

Just a quick update.
I have been smacked with a high level of fatigue this week. Emma was home from school on Thursday afternoon and Friday with a fever and bad cold. Jake joined in the fun and symptoms on Friday. Bill was in bed all day Monday (Jake was on the couch) and felt bad enough to drag himself to the urgent care on Monday evening to be diagnosed with strep throat. Tuesday, Bill took Jake to the doctor and found out that he had inflammation in his lungs. Our little guy is taking prednisone now too along with an inhaler. Jake hasn't been back to school and today and tomorrow are Parent Teacher conferences.
Could be that my body is just trying to fight what's going around (cold/flu) but it sucks.
Hi ho, hi ho, back to the couch I go....

I will be meditating and praying for the energy you all are going to send my way.
Thanks
Kris

As of February 2nd....

As of February 2nd we have crossed 80.80 miles together. That's wonderful. I am keeping track of my miles separately and when I get under the 1000 miles to go, I'll let you know.
I received an email from my friend Chris that her family was going to join us in the miles and a few others have mentioned that they will send their miles to me on a monthly basis.
THANK YOU, THANK YOU, THANK YOU....
Aside from motivating me to be active, this journey has inspired me to actually attend the conference in Denver. I had been asked earlier if I planned to go and I said I really didn't think so. You see, I am afraid to see the different levels that this disease effects people. That being said, each mile that we get closer to Denver, I realize this is a group of people that I can support and receive support from.

On Thursday afternoon I received a call from Dr. Cohen with the results from my lab work. My thyroid numbers are up and my inflammation numbers are up. We discussed a possible change from Imuran to Cellcept. The following day she called me and said she had thought it over and she doesn't believe the timing is right and she recommended we hold off on this change. Our first goal has got to be to get off of prednisone or at least to a minimal dose (something under 10 mg would be my hope) However, on Saturday when Bill went to pick up our prescriptions he came home with a very large bottle of Cellcept. I left a message for her and will let you know if and when this change will take place and what can be expected from it.
Sunday was really hard. The muscles in my arms are very achey and my skin hurts. I have been reading the Deanna Favre book and I may have found a connection. In the book she describes the side effects of a "chemotherapy cocktail". Although I take different kinds of chemotherapy drugs some of the symptoms I thought were related to my disease could possibly be the results of the drugs I take. I now have a new way to possibly analyze the statistics I keep on my "How I feel" spreadsheet. I already know that my low number day is almost always Sunday or Monday and my highest number day is almost always Thursday or Friday. Once I get the bugs worked out I think I might share the spreadsheet with other members of the Myositis Association. It's been helpful to me to put a "value" to how I feel.

Thanks for checking in.
Here's my quote for today:

"About all you can do in life is be who you are." -- Rita Mae Brown

klb

Summary of my doctors appointment

At my appointment yesterday I reiterated to the doctor how important it is to me to get off of prednisone. She shares that but again reassured me she has my best interests at heart and in her mind. She said we may get to a point where we agree that "this is as good as it gets" but she doesn't think we are there yet.
I inquired about the following treatments:
Rixuximab
CellCept
IVIG
All three of these treatments are discussed on the Myositis Message Boards and I was wondering if any of them could help me get off of the prednisone.
She does not feel that the IVIG is the correct treatment for my type of Myositis (dermatomyositis). She has used it but in cases much worse then where I am right now.
Rixuximab - Has good results but is typically not an approved treatment by the insurance provider and therefore she would need to write a case to the pharmeceutical company to possibly include me in a test. The only problem with that is I might be the one to receive the placebo and I would need to be weened off of the Imuran(azathioprine) before they would consider me a possible candidate. That also means that I would have to allow my condition to get worse in order to see if the new treatment might be better.
Finally, CellCept...she said this would be a lateral move. This medication would replace the Imuran and should have the same results. Not sure why I would want to make a change if the results should be the same but again we are holding off of that for now as well.

The lab work was done and I should receive a call with results in the next day or so. I passed all but one of the strength tests she performs. My neck muscles are showing signs of weakness again. To treat this and prevent weakness in other areas she changed the tapering schedule for the prednisone. I was at alternating doses this week 20 mg one day and 10 mg the next....as of today I am taking 20 mg for the next week every day. Then down to 15 mg for a week, 10 mg, 5 mg, etc...
She was honest with me and although we scheduled my next appointment for eight weeks down the road and lab appointment in four weeks she thinks she will be seeing me sooner because of the pain and stiffness I am beginning to experience. Today, on the treadmill for the first time I noticed the stiffness in my ankles. It took a lot for me to slow down my pace and just enjoy the activity and not worry about how far or how fast I could go in 15 minutes...I can thank my team of walkers for that. THANK YOU.
So, that's where I am right now.
I will keep you posted....keep your miles coming.

klb

Quote for the day: " Wake up with a smile and go after life...Live it, enjoy it, taste it, smell it, feel it." Joe Knapp

What's going on?

Well, Saturday was a bummer of a day and Sunday I was wiped out too. Today on my way to work I wondered if my arms were going to get me there. Not like I was flapping my wings or anything but they were very weak and trembly. As the day progressed it did not get better and I noticed my wrists and neck were also feeling stiff. My goal is to work a four hour day and I did not give up and go home early, though I did consider it more than once.

On the way home from work I had a choice to make....go home or go to the gym.
I went to the gym. It did not make my arms feel any better (or worse) but it did great things for my mind and spirit. Not that you are looking for a word of advise but if you are waiting to go to the gym or walk around the block, DON'T....do it because you can.
Tomorrow I have an appointment with Dr Cohen. I look forward to seeing her and sharing with her my spreadsheet statistics and also finding out what happens now.
I continue to taper my prednisone (which might be why I am feeling this way again).
Saturday I forgot to give myself my shot (which I now inject in two doses) so I gave myself a full dose around 2:30 AM on Sunday morning when I remembered. This might be why Sunday was so hard.

I will let you know how the appointment goes tomorrow.
Thanks again for checking in; for caring.

klb

Today's Quote:

"To love someone deeply gives you strength." -- Lao Tzu

Look how far we have already gone...

Together with my Uncle Dave, my mother-in-law Pat and my sister-in-law, Meg we have crossed 61.05 miles of our journey to Denver.
I know there are a few other people logging miles so I will add them as I get them.

enjoy the journey and each beautiful step you are blessed to take.

klb

Spreadsheet Update

Hello,
Thanks for checking in. I don't recall if I mentioned that my friends Laurie and Scott created an excel spreadsheet for me to use to document how I am feeling. I have been logging data on it since the first week of January and although I don't see any trends, I continue to log the information and really feel as though one of these days something going to hit me and the lightbulbs and bells will go off.

I have given a point value to the following items: what time I wake up, how long I slept that night, negative points for the time I am awake during the night, points for working at least four hours, going to the gym, doing my physical therapy, points value for what time I go to bed at night and if I have to rest in the afternoon. I am also logging my medication, changes to it and when I forget to take it. This week I added headaches to the spreadsheet.

The highest value I can get in any given day is a 10.
The first week I averaged 6.89
week two was around 4.64 and this past week 6.32.
Today is a bummer of a day. I started off strong and by noon I was wiped out. I went upstairs to rest and while I was laying there I could feel my muscles just throbbing. I closed my eyes and prayed that this was not the beginning of a flare rather the result of the four trips to the gym this past week and so I am cautiously optimistic that I could possibly blame this on that increase of activity. I'm not giving up the gym though. It's good for my body, my mind, my spirit and of course the miles needed to get me to Denver. Speaking of miles, the week of January 20th we have logged 17.5 miles. Thanks for your help. I will place another post shortly that shows how far we have traveled together.
Have a great weekend and remember this:

"If you have only one smile in you, give it to the people you love." -- Maya Angelou

klb

Mileage for the week of January 13th

Hi everyone,
The following miles were recorded this week 13.3. Many thanks to the contributors. I am not doing this alone and that feels GREAT.
I am in the process of doing some more recruiting for contributors of miles (walkers, runners, swimmers and bikers) and am hoping to increase my own time and miles this week as well. It's 11:15 PM and thankfully Jake has swimming lessons tomorrow afternoon. That means that I can sleep an hour later (God willing) and walk in the afternoon during his lesson instead of getting up early and getting out the door before anyone else wakes up. There is quite a bit of snow here and we will all be leaving the house earlier just to get to work on time.

Here's a quick quote for the day:

"What greater thing is there for two human souls than to feel that they are joined for life, to strengthen each other in all labor, to rest on each other in all sorrow, to minister to each other in all pain..." -- George Eliot

Good night.
More updates to follow soon.

klb

Comfort the Body, Lift the Spirit

Comfort the Body, Lift the Spirit was the headline of the most recent Myositis Association newsletter. The first paragraph is as follows:

"It's a huge order to fill the prescription above, especially when it comes to someone with a chronic illness. The very drugs that save lives often create their own problems, or perhaps there's no drug available. Many patients with chronic disease acknowledge their losses, seek medical intervention, then embark on a journey to find balance, meaning and the best health possible within their new reality."

That was very eye opening for me. I guess I never thought of myself having a chronic disease and what does it mean to have the "best health possible", where will this journey take me?

To the top of the mountain, right Dad?

The newsletter focuses on CAM which is the acronoym for Complementary and alternative medicine which includes, yoga, meditation, massage, tai chi, acupuncture and herbal preparations. In the article an individual who practices Chinese medicine says "one of the hardest things is understanding the complex effects of the many drugs a patient is already taking. There's a kind of "piling on" of drugs:"one drug may have side effects; so the second one may treat the side effects and, in turn have its own side effects, so a third drug is needed, and on and on". You can not imagine what relief I felt when I read this. It was a "WOW" moment, a moment of validation that I am being treated for a chronic disease and there are other things I can try as a supplement to my current treatment. Currently I take eight different pills, six of those were prescribed as treatment for Myositis, of those four are treating side effects of two.
A call to our new health insurance provider to see about CAM coverage will be added to the "to do" list for tomorrow.
I'll keep you posted.
Well, it's 4:30 AM. I've been up since 2:30 so I am going to head back to bed and see if I can sleep for an hour or so before facing the new day.

My quote for today comes from the Myositis newsletter as well.

"The way I see it, everyone's been dealt a hand. They may not be able to change the cards on the table, but with encouragement and wisdom, they can play them for the best outcome possible." - MaryLee Calmes-

Let the bad out and make room for the good...

The last couple of days have been on the side of "less than pleasant". I try really hard to keep positive and upbeat but sometimes I just have to lay out all that stinks so that I can see through it all to what is great and wonderful.

I am in the process of tapering the prednisone. This might be the reason I am having a challenge controlling the "crabby, angry" Kris. This morning my observant Emma said, "mom, you must not feel very good". "Why would you say that, I just said that I was hot." I replied. "Well, I thought that might be why you are so mad this morning."

I hate that my children see me not feeling well. Emma just asked me if the medicine that I am changing is called "mad medicine".

I also decided recently to log back on to the Weight Watchers etools. Do you want to know what makes me mad? The fact that in the last 14 weeks I have lost only 3.2 pounds.

I also find the unwanted facial hair, the daily raging headaches, waking up at 2:00AM and not being able to fall back to sleep and then struggling to be an active part of my family after dinner a big bummer.

The question is, do I call my doctor and tell her I am not myself? Is it possible I just need to "tough this out" and is tapering from prednisone like breaking an addiction? If I hold out, will it get better, will I feel better, will I be my pleasant positive self again? I really am not a crabby person. It is not my nature so it feels like "who the heck is controlling me?" "Who's in my head and body and how do I get back in."

My quote is from a hymn I learned as a child...the line I find myself humming over and over again is "I am trusting thee Lord Jesus, trusting only thee..."
Really, what else is there. There is a plan. I am part of it and He is in control.

Good Night.
Kris B

Mileage Update:

Just a quick mileage update:
This week we have a combined total of 22.5 miles, that's 30.25 miles down and just 1013.25 to go.

Now we are getting somewhere.
Doesn't it feel good?

I will provide a better update later, right now the Packer game is on. They just scored. WHEW.

Thanks for miles.

klb

A day of fasting...

Hello friends and family,

One of my favorite books when I was pregnant and then the first year and the toddler years was "A Girlfriends Guide..." to all of these times. What I liked the best is that the author was very down to earth, she used everyday words and examples and basically she told it like it is. I thought about those books last week when I was prepping for the colonoscopy that took place on Friday. It's one of those things, you don't ask too many questions because sometimes the ignorance is bliss....on the other hand it sure would have been nice to know that it might feel like the life being sucked out of me after two doses of Ginger Lemon Fleet stuff. YIKES.
Anyway, I considered documenting this in my blog but then feared you might all log off and never log back in. If anyone wants to know, just ask. I promise to tell it like it is.
The three things that were the best things I learned from this:
1) I can go without eating. I can control what goes in my mouth. I can say "no" to cravings and temptations if I really want to. From midnight on Wednesday, January 2rd until after the procedure on Friday, January 4th I was on a clear liquid diet. I survived.
2) You will likely not lose an extraordinary amount of weight during these three days. I don't know why, but I was hoping for at least 5 pounds and the scale went nowhere, not up but not down either.
3) The amnesia drug is a beautiful thing, and most important...it's better to go through it then wonder or worry that something might be wrong.

Great news, nothings wrong in/with my colon. :0)

On to a new subject:
YIPPEE, I have walking partners. My dad, my mom, my mother-in-law Pat Barger, my sister-in-law, Meg Williams, my sister, Beth, my Uncle Dave (it's never too late to join)
Last week we logged 7.75 miles. I'll let you know when we get to Franklin. We have a PyraMax Bank there and I am sure they would want us to stop by and say "hi" as long as we are passing right by.
There is no requirement to when to email me the miles so I will just let you know once a week how far we have gone together based on what I hear from the walkers.
Thank you though, all of those miles were not mine.

Quote for the day:

"We do what we have to do so that we can do what we want to do." -Denzel Washington

Thanks for checking in.
klb

Farther, faster....

A journey of 1044 miles goes a lot faster when you have people walking with and for you...

I got a call last night from my dad and an email from my Uncle Dave and they were wondering if they could help me cover the miles to Denver. I will still keep track of my individual miles but I will add their miles covered (and my mom's too) to my overall total and I will get farther faster. I will still walk, bike and swim all 1044 miles but I will do it in the company of friends and family.
If you would like to add your own miles to the overall total you can either put them in the comments section of my blog or email them to me directly (wbarger@wi.rr.com). Who knows, with help I might be able to take this "virtual trip" back and forth to Denver a couple of times between now and September 18th.

How many miles do you think we can cover making it a combined effort?
Really, I wonder what you think. If you would like to submit your guess, I will award a prize (yet to be determined) to the one who comes the closest.

Regarding this goal of raising awareness and money for myositis research, it is definitely a work in progress. I am learning as I go and adding and changing along the way. If you have any ideas or questions or need clarification, please let me know. One thing that someone asked was regarding my campaign page on the TMA website. You do not need to donate there if you don't want to put in your information on their website. I will email them and find out if I can issue receipts and/or documentation for your tax reporting purposes and let you know via my blog when I hear back from them regarding this.

I have to tell you, there is a wave of relief knowing that more than a mile or two will be covered every day and that it isn't all on my shoulders. I was wondering how I might keep you all entertained over the next 38 weeks at that pace...talk about the turtle winning the race. That would be too much scenic reporting for even the most positive person.

I'm looking forward to seeing who else might want to log their miles.

Here is a New Years Wish for you. I received it from my sister-in-law Meg, but I am certain she wouldn't mind me sharing it.

Treasure the memories of yesterday, make new dreams for tomorrow.

May you begin each day with a new dream...and end every day with a peaceful heart.

Happy new year!

klb