It's not about perfection

It's not about perfection...
Here I sit, on New Years Day with a clean slate in front of me.  There are things that I am planning for and I am smart enough to know that there are things I will have no control over.  One of the things I am going to try and put words to is my why.  Why am I going to pursue a healthy lifestyle.  Number one reason is for those I love the most.  I've been sick.  I know what it's like to have to have others take care of me.  I know what it's like to not have energy or muscle strength or lung capacity and when that was my life it was not under my control.  Now those things are behind me.  My myositis is quiet and there is no reason not to make the most of this life I have been given. 
For those I love the most:
I love spending time together as a family. I love that every day is a gift.  I want to be a role model to Emma and Jacob and the best wife I can be for Bill.  I don't want to take that responsibility lightly. What are my children learning from me?
Today I walked for an hour. I completed day 14 of a 30 day fitness challenge. I made some healthy food choices.
I haven't figured out how to say no to sweets.  This is when I need to remind myself that it isn't about perfection. It's about not quitting.  And it might be about figuring out why it's such a challenge to control sweet craving/consumption.  I am excited to see what this year will bring.  What will I learn and what will I teach.
Today we did quite a bit of lounging around.  At one point Emma said this was her shortest winter break and Bill replied, "just think, next year at this time you will be in the middle of your longest winter break ever.  Hard to believe that she is 18.  Even harder to believe that in eight months she will be heading off to college.  It's hard think about not having her here with us and when those thoughts make me sad I have to remember that this is a very exciting time for her. This past week she learned that Abbi Giese from Oshkosh will be her roommate.  They have been getting to know each other through snapchat and she is happy to be able to keep moving forward. Next step is applying for housing.
Jacob update:  Freshman year is going well for him.  He is doing great academically.  He played volleyball in the fall and now he is participating in the high school pit orchestra for the upcoming musical, The Adamms Family.  He loves lacrosse and is looking forward to that season getting up and running.  Jacob talks about a career in the Navy. At least now he is thinking about a career in engineering.

I would like to end my entries with a quote or verse or words of advise:

Proverbs 16:9, “A man’s heart plans his way, But the LORD directs his steps.”

Capturing the moments and memories....

A couple of weeks ago my mom mentioned that she wished she would have printed my blog.  She said she thought it would be a great thing for my kids to read and even for me to revisit to see how far things have come. I haven't thought about these entries for a long time.  I haven't thought about my myositis in a long time.  My mom planted a seed and this morning it bloomed. I found it.  I found my blog on December 31st and I don't think that was an accident.  I think it a door opening back up.  A place to capture my life and the moments that will become our memories.

A quick update on my myositis.  I still take my meds everyday.  A low dose of prednisone, recently reduced cellcept and plaqunel continue to be the winning combination for me.  I still have blood work done every three months with follow up visits with my rheumatologist.  
As I bid farewell to 2017 and welcome in 2018 I want to focus on being well.  The absolute truth is that I want the scale to report a lower number.  I want my clothes to be a smaller size. I want energy and enthusiasm for life and the vocations in which I have been called to serve.  I want to be free of clutter.  I want to be organized and have meals planned and exercise scheduled.  I want to be great role model for Emma and Jacob.
Not sure what will come of future posts.  What I hope they will reflect is the love I have for my husband, my children, my family and friends and the faith I have in my heavenly Father to guide my ways.

November = Thanksgiving

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

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

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

Do not worry about tomorrow: God is already there.

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

I am grateful for you!

Just one very small part...

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

Faith...Hope....Love!

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

This week...

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

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

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

Kris

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

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

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

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

First things first

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

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

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

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

Have a great weekend.

When I know more, I will post again.

Thanks.

Kris

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

I can do all things through Christ who strengthens me.

Not as easy as a phone call

I knew when I left for work this morning that I would be coming home to rest before the day was done. By noon I was headed home. This morning I left a message for Dr. Cohen letting her know that the low dose of prednisone did nothing to help my aches and fatigue. She called back this afternoon and instead of lining up the Rituxan, she told me we need to do some more tests to rule out it being anything else.
First, a test of my adrenal glands. It could be that they aren't working like they should be and that is causing the fatigue and aches.
If it's not that, then we will do a full chemistry panel and the doctors will make sure it's nothing else.
An EMG and EKG might also be ordered and maybe a muscle MRI which is a new technology that wasn't available three years ago. Not everything at once, the easy things first.
It is much like putting together a puzzle. Look at this piece, does it fit? Look at another piece....does it fit?
In the end the puzzle is completed but it takes patience and the right set of eyes.

I don't remember....

I think of it often but don't take the time to get back to my blog and write what's going on with me.
The thing is, I don't remember what it feels like to feel great. June marks the 5 year anniversary of the results of the muscle biopsy. The scar in my thigh has faded, the disease has not. There are many days that I am sick and tired of being sick and tired. What would it be like to not have to push through a day? I go to the gym because I can. I go to work because I can. School functions and church functions because I can. Actually, there isn't much I can't do, but the price is fatigue. This has not gotten the best of me, but it has gotten me back to the doctor. Last week I decided I had had enough and there has to be something else we can try. I had a cold so the increased fatigue may be from that. My red blood cell count is low. Not low enough that it caused any alarms for my doctor accept now that the aches and fatigue have come on stronger I am being monitored more closely. The aching in my arms and hands is a daily thing now. The fatigue is....well, exhausting. I am back on a low dose of prednisone and she has prepared me for the fact that I might have to take it forever. She is hoping that will help me kick this thing but if it doesn't, she would like me to start a new medication called Rituxan. This is two infusions (they can take 2-5 hours), 15 days apart that could make me feel good for up to six months. When the Rituxan wears out, I can get another infusion. They use the drug primarily to treat people with Rheumatoid Arthritis but it has been effective in people with dermatomyosits as well. Last week I wasn't so sure I wanted to go this route, today it seems like it might be the right choice. Everything has side effects, all medications carry with them risks. My doctor has to disclose the risk but also feels that the positives would outweigh the negatives. I'll keep you posted on what I decide.
A few of you have asked if there will be a second annual Myositis walk and I know there will be. I just don't know if it will be the first or second Saturday of September. I do know it will be at Nicolet High School again and I am thinking of how to incorporate a running aspect into the event as well. The raffle was a last minute thing but it was raised a lot of money so if you know of any business owners or people who would want to donate gift cards or other items to that part of the event I would really appreciate it.
Take care my friends.
I don't take for granted each day I am given. I count my blessings instead of sheep. good night.

Isaiah 41:13

I can't believe that February came and went and I never logged on to tell you how I am doing. I did not go back on prednisone. I ordered proactiv instead and that seems to be working well on my skin issues. There were no significant changes in any of my lab results last month and my next appointment with Dr. Cohen is this week so we will see what is to come of this journey. I know that I have a medication change coming soon. The cytoxin that I have been taking is only a short term (6-18 month) medication and I believe it has done it's job as it relates to the interstial lung disease.
Even though February has come and gone, the bible verse I had was this:
"I am the Lord, your God, who takes hold of your right hand and says to you, 'Do Not Fear'" Isaiah 41:13.

Now to March..."Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12.

Rejoice in hope...I had always hoped that I would be able to return to work full time. I enjoy the work I do and the company I work for. My disease has pretty much been unchanged for a year now...so on February 28th I started back full time. I remember it was about a year ago when we were packing for our spring break trip to Florida that the doctor called and we had that terrible conversation about the seriousness of my lung condition. Either take the prednisone or let your lungs turn to scar tissue and die. I took the medicine. The inflammation went away. It all worked out. Here I am typing an update, rejoicing in hope for more improvements.
Be patient in tribulation...there is enough of that going around. Regardless of who you are, I would bet there is some tribulation in your life. It's part of life, right? It might be health, job, money, friendships, politics, money, addiction, whatever it is...
Be Constant in prayer. I'm praying, daily, sometimes multiple times a day. When you feel like there is nothing you can do to help someone or to change something, this is something you can do.
I will log in a doctor update later this week.
Thanks for checking in.
Kris

The appointment and more....

The appointment with Dr. Cohen was pretty good. My symptoms are improving. She still hears a bit of "Velcro" in my lungs and because of that is going to increase my cytoxin. Although I don't understand the reasoning behind this decision, it has something to do with getting my white blood cell counts to drop. They remain in the normal range and I guess they want to see them drop to maximize the effectiveness.
The other thing I have going for me (sarcasm) is this terrible rash/breakout on my face and my back. It's been on and off but yesterday and today it's awful. I wear a mineral makeup that has been pretty effective in reducing the redness but today I feel as if I could tear my back off (if only I could reach the really itchy spot) and my face looks and feels awful. I called Dr.Cohen to check and see if it could possibly be the switch from prednisone to hydrocortisone and although she doesn't think so, she did recommend I go back on the prednisone and schedule an appointment with a dermatologist. By now you all know how I feel about prednisone. I have only been off of it for 10 days. Give me a break! I don't want to take it so I am seeking a second opinion and going to see my internal medicine doctor this afternoon. You would think I could wait until Thursday to see a dermatologist but I don't know that doctor and they don't know me and I don't want to take prednisone. I know, I probably sound like an absolute pouty toddler, sorry about that. It just seems like if it isn't one thing it's another.
Did I tell you I have a mantra for the month of January?
It is a bible verse, Philippians 4:13: "I can do all things in Christ Jesus who strengthens me."
My sister Beth has this verse in multiple places and uses it to keep her going as it relates to exercise. I thought it would be a great way to kick off the new year with all the goals and resolutions that typically are committed to in January.
When I am heading for chocolate or not heading to the gym or at the gym swimming laps or walking on the treadmill ....this is the verse that I say to help me keep going or to help me stop depending on what the situation is.
I already have my verses/mantras picked out for February and March but you will have to check back then to find out what they are.
In the mean time, take care of you.....
Kris B

Happy New Year

January 1st marks the first day in a VERY, VERY long time that I have not taken any prednisone. I moved from prednisone to hydrocortisone and will continue to taper down for there.
December our home was plagued with sick people. Emma fought pneumonia, both kids fought the flu, and Bill has cared for them and nursed them back to health while fighting with his own cough and cold. Just after Christmas I found myself fighting some of the same symptoms. It's important that when I am not feeling well that I stay really aware of whats going on. My lungs are compromised and even a small infection could quickly spiral out of control and cause more damage. For this reason I called my lung doctor and said "I have a cough, should I be concerned?" She said take some mucinex to loosen it up and head in for a chest xray. I thought this was a little much but I trust her so off I went to the hospital.
GREAT NEWS...my lungs look better than they did the last time. The cytoxin and the prednisone have done their job. So, the blessing of this cough and cold was getting xray and the call that my lungs are looking good! One less worry for the new year.
This week I see Dr Cohen (rheumatologist) and get my monthly lab work done. I will let you know how I am progressing after that appointment.
The posts are fewer and far between and although I miss writing, it means that I am feeling better and off doing other things.
God's blessings to you today and throughout the new year.
Kris B

Not bad...

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