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