This past weekend I was together with my family (children, husband, parents, sisters, brother in laws, niece, nephew, cousins, aunts, uncles, etc...) and we prayed together for the life of my cousins four year old son, Nathaniel. We laughed and cried and smiled and golfed and ate and drank and spent money on great silent and live auction items. It was a weekend full of life, love, hope, faith, family and Jesus.
These things make up what is most important to me.
It was an amazing experience to stand among a crowd of people (family and complete strangers) and actually feel the power and strength and comfort that comes from this that we held in common. One little boy and the simple request of his mom and dad to pray for them brought people together from all over.
I took many things and many memories from this special day. One of those things was a small red and white rubber bracelet that says "Bravery". You know those bracelets that Lance Armstrong made famous, well, it's like that. The money donated for the honor to wear it goes to Aplastic Anemia and Nathaniels family.
What does bravery mean to you?
What obstacle is so big that you need "bravery" to overcome it?
I have a few things on my list. A few things that seem pretty hard, maybe even impossible (though you all know by now that I don't believe in impossible). I talked to my uncle at this event and we both commented on how we are looking at life differently with Nathaniel in our lives and prayers. The bad days don't seem so bad. The aches or pains or frustrations pale in comparison to what we pray for each day for Nathaniel and his family.
Please consider those things on your list that seem unbearable to overcome.
Decide which one would be life changing for you.
Pray without ceasing.
God is with you for each and every step it will take.
Be Brave.

Love,
Kris

Where in the world have I been....

I'm back.
Sorry. Too much time has passed and you could have assumed that I stopped blogging. That is not the case. I had a few computer issues last week and Bill was "up north" with Jake and Emma so I waited until he got home and here I am.
I am feeling pretty good.
However, that being said, just yesterday I did too much and rested too little and just like that I struggled today. When I say I struggle, in a nutshell my muscles feel tired (like I just got done with a race or a good work out at the gym). I drag myself around and do what needs to be done the whole time craving rest.
The kids were great again today. When I got home from work and dismissed the babysitter, I locked the house up, asked Emma and Jake to be really nice to each other so I could take a rest. Emma said..."mom, you don't have to set an alarm. I can tell time and I will come and wake you." What a lovely thing to wake up to the sweet voices of my children instead of the alarm clock.

Health Update: I saw the doctor last week. During the appointment she said she thinks my disease is "quiet". The following day she called with the lab results and the test that measures muscle was not "normal". That being said she decided to go with how I am feeling versus what the lab results indicate and leave my meds just as they are for now. More labs scheduled for a month from now and the next doctor visit for two months out. She indicated that she would like me to remain at a 30 hour work week until she sees me again in October.

I am still working on getting exercise into my day. It's been a challenge to do that at the end of the day after my energy has been zapped. That is not an excuse. I am going to figure it out and when I do, I will let you know. Blogging helps. It helps me be accountable when I've put it on paper (or in this case, documented via blog).

Guess what I did over the weekend....
I rode a bicycle. We were in St. Germain and Emma wanted to show me the "swimming hole" she and her friend Katherine visited during the week. We rode bicycles about a half mile down the road and back. It felt wonderful to be on a bike. It was scary how quickly I became exhausted. I am going to do it again, sooner rather than later. I am even beginning to plan out how I can train for a triathalon over the next year, working up a one mile bike ride to a 30 mile bike ride will likely take that long.
With that being said...here's the quote I want to share with you.

"Faith is taking the first step even when you don't see the whole staircase."
-Martin Luther King, Jr.-

Have a great day.
Thanks for checking in with me.
Kris

I am feeling really good. The other day when I wrote that I was going to rest for an hour....right.
I got up an hour later and Bill said "Go back to bed, I got it". Many times Bill needs to remind me how important it is not to push myself. We're in this together. Have I mentioned lately how blessed I am to have him in my life. With his encouragement I went back to bed and woke up the next morning refreshed and ready to go.
There is a little bit of adjusting going on right now in our home. The kids are no longer at Summer Camp so when I get home from work we needed to figure out how I was going to be able to rest.
Jake and Emma are wonderful. I lock up the house like Fort Knox and let them know there is no opening the doors, answering the phone, going outside or yelling and then I go upstairs and rest for an hour. They use the quiet time to read, do a craft or most likely catch up on "sponge bob" or other kid shows they love. It's really quite amazing what kids can and will do.
Tomorrow Jake has immunization for measles, mumps and rubella. We put this off at his four year appointment because of the high doses of prednisone I was taking.
Are you wondering what that has to do with my health?
Well, although it's been six weeks without taking any steriods, two of the medications that I am currently taking are immunisuppressive drugs. This means my immune system is suppressed. The MMR vaccination is a live virus so we will be saying a few extra prayers that I have what I need to keep myself healthy.
Other than that my next lab work and doctor appointment is August 9th. More medical updates will come at that time.

Here's my quote for today....
"Be faithful in small things because it is in them that your strength lies." -martha theresa-

Monday update

Hello,
It's Monday, early evening and I am exhausted.
I didn't rest yesterday and although I felt really good all day it caught up with me around 3:00 this afternoon. The kids were wonderful and agreed to stay in the house and watch a movie with me but none of us closed our eyes. When Bill gets home I will rest for an hour or so and then get back up so that I don't mess with tonights sleep.
I do feel good though. I think I may finally be feeling the full benefits of the methotrexate. The past three days I've walked down the stairs in the morning with much more ease and much less pain.
Not sure if I mentioned this before but since I returned to work a number of people have commented on how much better I look. This concerned me of course because I didn't think anyone could tell I wasn't well. Bill said it wasn't so much that I looked sick but I looked worn out. I guess it's better not to question a compliment.
This week I will continue to work from 8:00 AM -2:00 PM. I'm not certain how I am going to sneak a nap in there but I am confident that we will figure it out. That might be a good hour for everyone to rest and/or read books in their rooms.

I hope you all have a great week.
I will keep you posted.
Kris

YIKES

Sorry about the last blog.
As you will notice, I didn't do a very good job proof reading before I posted it.

This past week a coworker gave me the book "The Secret" by Rhonda Byrne.
I am only on page 16 but so far it's full of inspiring, "can do", words. In the early stages of the book it talks about the law of attraction. "When you become aware of this great law, then you become aware of how incredibly powerful you are, to be able to think your life into existence."
There is definitely something to this.
I know that when I wake up in the morning and say something like "oh I feel like crap" guess what?
If I start the day out with "thank God for this beautiful day !" guess what?
You guessed it. Thoughts are very powerful.
Since I got sick, I have been saying that I have this "feeling" that I am being called to do "something great". If only five out of a million people in the United States are diagnosed with Myositis each year, then it happened to me for a reason. That being said, I just opened up "the Secret" to page 84 and you know what it says....
"Our job is not to figure out the how. The how will show up out of a commitment and belief in the what." -Jack Canfield-

Health Update: I went to the doctor on Friday morning as I had a few symptoms that I was concerned about. Good news is everything is treatable and nothing to worry about. Here's the deal about autoimmune diseases, they like to outdo each other. Often a person with an autoimmune disease will get others. That is why it's so important to not ignore symptoms are push them off to deal with another day.
You only have on body and only one life so don't take silly chances, TAKE CARE.

I'll let you know how tomorrow is. I was going to give myself my shot when I got home from work but I was so tired I went right to bed. I'm disappointed in that as I don't want to spend tomorrow in bed while my family plays.

A lightbulb moment - When I wake up I will feel great and thank God for a beautiful day. I'll let you know how that goes.

Kris

Today is Wednesday, July 25th.
This morning I started my morning with a "wellness" program at work. It was a class on strengthening your core. It was difficult to be in a group with my peers and not be able to do all the exercises that the instructor was showing us. I suppose not everyone needs to know what I am dealing with. I am fairly certain no one else cared what I could do or what I couldn't do but it sure would make it a lot easier for me if everyone knew. It's not a secret of course but it doesn't come up in casual conversation either.
After each wellness session we are asked to provide ideas for future classes. This provided a great opportunity for me to share my insights on the importance of collecting your family health history.
Have you done this yet?
Start.
Start with something, yourself, your children, your parents, somewhere. I'll continue to noodle on how to create a template for that. Once I figure that out I will email to my distribution list and then everyone who receives it can do the same thing.
On Friday morning I am going to see my doctor. I am having a few stomach issues. They are probably nothing and are most likely related to all the medication but she wants to see me none the less to rule out the possibility of an infection. Two of the medicines I take are immunosuppressive drugs which means that my immune system is compromised. I am not too worried about it though I do feel a bit crazy having to call the doctor about every questionable thing.
As I mentioned, today is Wednesday. On my list of things to do today is a day for a cardio activity. I figured if I wrote it down I would be accountable so, off I go.
It's 8:15 PM. It's very humid outside but I am going for a walk.
I was trying to find a quote to write down without having to leave my computer. Here's the ABC's I have on a plaque in the kitchen.
Accept difference-Be kind-Count your blessings-Dream-Express thanks-Forgive-Give freely-Harm no one-Imagine more-Jettison anger-Keep confidences-Imagine more-Master something-Nurture hope-Open your mind-Pack Lightly-Quell Rumors-Reciprocate-Seek wisdom-Touch hearts-Understand-Value truth-Win graciously-Xeriscape-Yearn for peace-Zealously support a worthy cause.
Good Night.
Kris