Not bad...

December 1st and for the next 30 days I will be down to 5mg of prednisone. After that I will transition to hydrocortisone which is more to help the adrenal glands than to treat the disease. It's nice that the weaning of prednisone has been successful. It's slow but remember that saying "slow and steady wins the race", I am counting on that in many aspects of this journey.

Work has been very busy. I had found a good balance between work and life between 25-27 hours a week. This past month it's been more frequently a 30 hour week and that takes it's toll on everyone. I just do not have anything left to give after a week like that and I spend my time at home recovering for the next day instead of doing the things I love doing. OK, many of these things I don't love doing but not being able to do them sheds new light on the task...dinner, laundry, dishes, helping with homework, walking the dog or going to the gym.
Should do them...yes
Want to do them...not really.
Can't do them because I am to wiped out...stinks!

Friday morning I go back for my monthly labs and the results of those tests will be the guide for whatever else is to come on the medical journey.

Here's a plug for CVS. We left for Chicago on Friday and half way there I realized although I had packed my pill boxes, I had not taken the time to refill them. I called the doctor to see if I could skip them for two and a half days and the answer was no. Our faithful GPS guided us to the nearest CVS to our hotel and within 20 minutes I had what I needed to get me through the weekend, no hoops to jump through, no questions asked. Everything I needed, everything they needed to meet my needs was right there in the computer. Yeah CVS.

Well, that's all for now. Thanks for checking in.
Please remember that as you prepare for the upcoming holiday season that it's not about being perfect...the perfect gift, the perfect wrapping paper, the perfect dinner or perfect decorations. What's perfect was the gift of Jesus. That's the only thing that's suppose to be perfect about Christmas. God planned it that way.

Did you just feel the weight come off your shoulders? I heard a similiar message a couple of years ago on Christmas eve and the since then the Christmas seasons have been more joy-filled.

Joyfully yours,
Kris B

CT Scan

I saw Dr. Adl yesterday and the results of the CT scan are good.
There's no inflammation. YEAH!
The tapering of the prednisone can continue very slowly. I am at 10mg right now and can't wait to report the day when I can do without.
My next doctor appointment is November 2nd and hopefully at that time we can formulate a plan for the other medicines.

I mentioned in one of my emails that I wasn't sure if I was believing in myself as it related to what I could accomplish physically so in September I committed to 150 minutes of exercise each week and I did it. In October I bumped that up to 160 minutes per week and so far I have also been able to keep up with that. I plan to continue adding 10 minutes a week each month for as long as I am able. It's slow but it's something and I feel good about it.

I ____because I can. Right now I am swimming, walking, riding the bike and just this week added some weights to that.

Thank you for checking in.

Quote for today - I saw a cartoon that says "I'm always losing my car keys, my temper, my memory and my patience...so losing weight should be a breeze!"

What was it like in St. Louis...

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

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

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

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

Other important things that Mike said...

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

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

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

Dr update

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

Too long, too much....

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

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

One month down

It's been just about a month since I started cytoxin. I don't feel any different. This week I did get the OK to start tapering my prednisone and that is a good thing. For past two days I have been taking 15 mg, down from 20. Now I don't know if it's the bike ride I took last night or the reduction in prednisone but I am significantly more achey than I have been.

Over the past two weeks I have set a goal for myself to exercise 150 minutes each week. Last week I fell short by a half hour. This week......success. I have 17 minutes left to go and I plan to complete that this morning. My reward is a pedicure and my toes are so excited.



I am counting down now for the days until the Myositis Walk...just 8 days to go. So far I have about 65 people registered to walk. My goal is to have 100. Please pray for fair weather. By that mostly I am hoping that it doesn't rain.



Somehow, it will all come together.

Day 2

On Monday I called the doctor to check on the lab results and although it took awhile everything indicates that it's OK for me to start taking the Cytoxan.
Yesterday I felt a little yucky around 11:00. Today I don't and I consider that to be a very good thing. I am drinking the required water and much more. Easily I drink 96 oz of water a day and after that I stop counting. This will continue to be very important because I don't want the drug to be sitting around my body messing things up. The water will flush away what's not suppose to be there.

I finished my pulmonary rehabilitation on Monday afternoon. It was very valuable experience. I learned a lot and met some wonderful people. One of the wonderful people I met was Marguerite. I know I have mentioned her before. She died last week. Her lung transplant didn't come in time. Meeting Marguerite opened my eyes to many of the blessings this diagnosis has brought me. Although Marguerite also had interstial lung disease, it wasn't diagnosed right away. The early symptoms shortness of breath and a dry cough wouldn't cause too many people to seek medical attention and even if you did, they might be inclined to tell you that there is nothing wrong.
A blessing that continues to present itself in my life is that early on while they were trying to figure out what was wrong with me I received a baseline test for just about everything...the acronyms MRI, CT, EKG, EMG all became too familiar...they looked at everything and took a baseline picture of everything. Over the years I have also learned how important it is to listen to my body. If something's not right, I don't sit around and wonder about it very long. That's what happened with my lungs. One morning I just said enough is enough. I should not be coughing every morning. There was a baseline CT of my lungs and a new picture was taken and there you have it, a new diagnosis, caught in the very early stages and treatable. What a blessing!

The end of my pulmonary rehab means that my schedule opens up a little and gives me some flexibility I didn't have before but before I go filling it with new things I need to figure out a way to continue that commitment to exercising at least three days a week. Today I have to take Jacob to swimming lessons so I am committed to swimming during that time. There...it's on the schedule. I have an appointment to get it done.

My friends, thanks for checking in. I appreciate your continued thoughts, prayers and support.

Kris B

60 + and other information...

T-shirts
I submitted my t-shirt order for printing.
63 t-shirts were ordered and many of them will be participating in the walk on September 19th.
Ohhhhh...I hope the weather is nice that day.
I also collected $490 in donations for Myositis Research and Awareness.
Many thanks for your generosity. I know that this is a very hard time to be asking for donations and I feel blessed that so many find this to be a worthy cause.

Walk
A few people have asked about the upcoming walk.
There is no required distance, meaning it's not a 5K, 10K or anything else. It's just whatever you can do. Remember...."I____ because I can" is the t-shirt message. Just do what you can do, that's it.
We are going to total up the combined number of laps people walk and that will be our record to break in future walking events.

Medication
I haven't started my new medication yet. There was some confusion with my lab work from last week and I had to have some additional tests run yesterday. The results should be in over the next few days and then I'll get started. I've been practicing drinking a lot of water. It's always important but now it's even more important. I am up to 96 oz of pure water usually by 3:00. After that I switch to LaCroix or something like that. I keep four pennies on my desk and each time I finish a 24 oz bottle of water I move a penny to the other side of my desk. It's an easy way to help keep track of my progress. The goal is to have all four pennies need to move before I can leave work.

Singing
I went to a funeral yesterday afternoon. I have been thinking about participating in our church choir for awhile now and it just seemed right to honor Chuck's life and join the choir voices for his service. Unfortunately that didn't work out for me. Humidity makes it a little harder for me to breathe and my pulmonary rehab has taught me a new way to breathe which is not conducive to the breathing you do while you are singing. A deep breath in and and an exhale (3 count out) doesn't work when you are singing. I guess I will continue to raise my voice from the church pew versus the choir loft and of course, in the car too...much to my family's dismay.

Have a great day.
Kris B

Psalm 46:10

"Be still and know that I am God"

Be still and know that I am

Be still and know

Be still

Be

Slight, modest is better than...

As you know from my most recent post I had a number of medical appointments this week.
On Tuesday I saw Dr. Cohen and she was really pleased with how my lungs sounded and the improvement in my overall strength. She believes this is from the pulmonary rehabilitation and I have to agree. Exercising three days a week for two hours has to have some positive effects. Yeah me! I am getting stronger.
On Wednesday I saw Dr. Adl. She was also pleased with my breathing and how my lungs sounded. Clinically I am doing great.
Then there is the results of the Pulmonary Function Test and the CT Scan. Dr. Adl used words like "slight improvement" and "modest change" followed by "not what I was hoping for" and "I expected more" and "don't be discouraged". Although this isn't great, it is better than words like "progressed" or "advanced".
She told me she would be in touch with Dr. Cohen to discuss another course of treatment and one of them would call me.

Late yesterday afternoon I received a call from Dr. Cohen. She had spoken to Dr. Adl and apparently it's time to "put the gas peddle down" with regards to the treatment of my lungs. She said treating my lungs will take priority over treating the myositis. Together they decided to add to the mix of medications I currently take a drug called Cytoxan. Don't look it up.
Today I will meet with Dr. Cohen to get the information on the drug. I won't start it this weekend because I am going to be in Eagle River and the side effects can be unpleasant. I also want to talk to my internal medicine doctor because I am starting to feel a little overwhelm processing this information. Basically I want/need someone to look at me as a whole person. Specialists are great and I hold a tremendous amount of confidence and respect for the doctors I am working with but one has my lungs as her special interest and one has my myositis as her special interest and I need someone to "quarterback" for me now.

I asked for a copy of the Mary and Martha sermon and I wrote down the close in my book of quotes. It's one I am holding on to very tight right now.

"Never will I leave you and never will I forsake you. In that peace and joy, you can let go. You can let go of worry, the fear, the stress. You can lay your burdens down and let Jesus carry them awhile. So lay them down and listen... because Jesus is speaking...to you. And that is the one important thing needed. Amen."

Status update

I spent a little time this afternoon updating my fundraising/awareness spreadsheet and so far I have received over $500 in donations, sold 49 t-shirts and have 39 people signed up to walk with me on September 19th. I better get busy sending out thank you notes!

Today I had pulmonary rehab and found out I am nearing the end of my 12 week course. I know I am able to use the same facility for a "maintanence" type of service but I don't have all the details on that as of yet. I also had a CT Scan of my lungs done and a repeat pulmonary function test. The results of those tests will be sent to my doctors and I will know more after seeing them.
I see Dr Cohen (rheumatologist) tomorrow and Dr. Adl (pulmonologist) on Wednesday. I will provide a medical "status update" later this week.

Let me leave you with the quote I came across over the week-end...

There are two ways to live your life
One is as though nothing is a miracle
The other is as though everything is a miracle.
- Albert Einstein-

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

It's 11:00 on Sunday night and I am not tired. All day I have been thinking about updating my blog and when I logged on and saw the last time I was out here was a month ago I realized that is a good thing. I don't have any new medical news to report. Last week I decreased my prednisone by another 10 mg so I am now on 20 mg until the doctor OK's another decrease. Someone at work shared with me a series of "anti-cancer diet" CD's. I've listened through the first four of them and there is some really good stuff in there. I'm blown away at a common thread that is shared by people faced with a something beyond your control...sometimes it changes life for the better. Of course I would rather not be keeping a blog about the ups and downs of myositis....but would I know this much about myself if I didn't? Never did I imagine having to call on my faith as I have in the passed four years. Without this situation in my life, would I have been able to see and feel the comfort and care and power of my God?

Back to the topic of food/diet: the anti-cancer diet and the anti-inflammatory diet and the coaching I received from Real Life Foods, and the time I spent with Kathleen at Slow Poke in Grafton are all very similar. Eat good, healthy foods, lots of fruits and vegetables, not as much meat and dairy. Drink green tea. Add curry, cinnamon, garlic, basil, rosemary and other healing herbs and spices into your meals (not at all at once, that would be bad). Stay away from processed foods. Refined sugars are bad. The challenge continues to be incorporating this into every day. Step one: be a better meal planner and grocery shopper. I'm going to "keep pedalling" in this direction and I will get there.

Speaking of steps, pedalling and getting there:
Tomorrow at work a new quarterly wellness challenge begins. This is a walking challenge and for the past couple of years I have chosen not to participate. We have had a variety of fitness and weight loss challenges at work and I have always felt that I would be letting whatever team I am on down....plus I was embarrassed at how little I could do physically. Over the past couple of months I have come to realize that my actions speak louder than my words. The greatest challenge was this summer. We joined a local pool and the thought of being in a swimsuit in public and running into a parent from school was a bit unnerving but I did it. Every time I take the kids to the pool I put my suit on. We swim and play in the water and I rest in the afternoon sun or the warmth of a summer evening if I need to. This is my body and although it's not the body I had five years ago, it's the body that wakes me up every morning. My eyes see the sunshine and the moonlight and the beautiful faces of my kids and loving husband. From the top of my head to the tip of my toes it's God's creation and it all works. That's what I want my kids to learn from my example. It's not about being the best, it's about being the best you.

Tomorrow I start walking. The end goal is 10,000 steps a day. The goal for tomorrow is to put on the pedometer and start.



T-shirt update: So far I have sold 30 t-shirts and have 38 people registered to walk on September 19th. I have sent letters to the Governor of Wisconsin and the Mayor of Milwaukee asking them to recognize September 21st as Myositis Awareness Day. Oh yeah...the Executive Director of the Myositis Association sent me an email last week and he is coming to my walk. I hope I can get some sort of media coverage for him.



Now to Mary and Martha....

The summer has been keeping us busy and many of our activities have us out of town on the week-ends. We've been to church but not to our church and I was so happy to be sitting at Our Savior Lutheran Church in Whitefish Bay this morning.

I hope the sermon gets out on the church website because I am certainly not going to do it justice but here are a few things I took away.

• Remember what is important


• Ask for what you need


• Trust God

Martha was so worried about making sure everything was done: was the house clean, the table set, the food made, etc....She was angry that these things didn't seem to matter to her sister who was just sitting around talking to their guest (Jesus). Martha let the stress of everything that "needed to be done" escalate and she blew up. Would the afternoon played out differently if Martha had first remembered what was really important and what if she had asked Mary to help her? In our house I am definitely Mary and Bill is definitely Martha. Don't get me wrong, we both know what things need to be done. We just approach them differently. I think that too is a blessing I received from this disease. I see "what's really important" different than Bill. In the same way, he looks at what needs to get done and doesn't stress about it. He just does it because it needs to get done. Have a mentioned lately how blessed and lucky that he is my husband and Emma and Jacob's dad. Well, Bill and I had a few laughs throughout the day and we recognized our different Mary and Martha tendencies. Stuck in traffic do you want to be Mary or Martha? With a day full of things you need to do and things you want to do what would Mary do, what would Martha do? Today we practice the traits of Mary as best as we could. It was great!

Trust God. No way am I going to do this part of the sermon justice. What I heard was when you don't have the answers, when life isn't going according to our plan, we need to let go and let God take care of us. Not an easy thing to do, but when you do it's amazing how wonderful it feels.

Good night my friends. Thank you for checking in. klb

First t-shirts sold...

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

4 t-shirts
4 walkers

Yeah!

another medical update....

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

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

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

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

A myositis update...

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

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

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

Eat, Drink and Be Mindful...

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

Just like that....

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

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

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

Check...

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

Check...

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

It's been rough...

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

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

Blueberry and Pecan

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

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

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

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

What a great day!

A little nervous...

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

What a compliment...

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

http://roo-trytotri.blogspot.com

Be thankful...continued

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

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

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

A spark of energy and a reminder...

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

Be thankful

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

Still feeling yucky...

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

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

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

klb

Be Thankful....

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

Pulmonary Rehabilitation continues

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

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

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

Be Thankful...

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

PR (pulmonary rehabilitation) day two

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

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

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

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

I learned some new things too.

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

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

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

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

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

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

Pulmonary Rehabilitation

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

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

That's where we will start.

Thanks for checking in.

Kris

Be Thankful....

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

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

The mail...

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

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

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

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

Time flies....

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

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

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

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

Be Thankful

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

One sentence journal entry 3

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

Story People, Brian Andreas

One sentence journal entry 2

An email from my dad contained these words:

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

One week and three days...

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

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

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

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

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

One sentence journal entry

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

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

Good night.
Kris

Looking a gift horse in the mouth...

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

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

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

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

Day 1

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

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

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

Have a blessed day.
Kris

Down the hatch...

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

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

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

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

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

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

Prednisone it is...

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

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

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

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

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

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

The results are in....

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

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

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

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

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

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

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

Thanks for checking in.
Kris

I have a small nose...

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

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

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

The nurse called....

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

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

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

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

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



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



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



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



Good night.

Kris

For a week now...

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

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

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

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

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

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

A wise woman said.....

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

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

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

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

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

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

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

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

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

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

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

No new autoimmune disease fighting for attention...

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

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

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

Bronchoscopy

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

Oh what comfort

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


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

Oh what comfort.

I've got you covered...

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

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

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

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

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

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

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

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

News is news...

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

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

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

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

Love,
Kris

On second thought....

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

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

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

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

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

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

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

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

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

Love you.
Kris

Update regarding my test of endurance

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

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

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

Have a great day.
Kris

All is well...

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

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

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

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

Thanks for checking in.

Kris

Update on my hands....

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

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

May today there be peace within.

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

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

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

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

Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise, and love.

It is there for each, and every one of us.

A New Year....

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

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

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

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