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.