Tuesday, April 29, 2008

I've Been Tagged by Linz!

I've been tagged by Linz to do a meme on Ten Reasons Why I Blog so here goes!

Ten Reasons Why I Blog:

1. To connect with others with chronic illness and the ones they love.

2. To encourage those living with chronic illness and those they love.

3. To share experiences in the world of CIDP. It's a difficult world to navigate and sharing information can be such a blessing to others.

4. To overcome my fear of appearing "weak" in the eyes of others. Blogging and sharing my journey is therapeutic in a way. Thanks to my special friends for helping me overcome this fear and get on with encouraging others.

5. To learn from others through their comments and feedback. I love hearing from others about their experiences, emotions, suggestions, etc.

6. To share my joy!

7. To share my journey.

8. To provide a place where I (and others) can let my hair down and be real. I love a blog where you can be authentic, but still hopeful.

9. I also blog to give information about my passion for creative communication. You can find out more about that here.

10. This is the biggest reason of all...to give HOPE to those dealing with adversity, whether it be an illness, financial struggles, personal struggles, etc. We all have struggles, but there's HOPE.

I'm tagging the following:

Encouragement from my heart

Write on the Edge

All Things Cherished

As Linz said, hopefully they have the spoons to respond! If not, please check out their blogs anyway and don't forget to stop by and say hi to Linz.

Many Blessings,

Monday, April 28, 2008

Choose Joy

Leaving Target yesterday afternoon, I passed a woman getting into an electric wheelchair. You know the ones the larger stores provide for those with difficulty walking? Anyway, this woman used a cane and was visibly ill. Her face was puffy and moon-shaped, a face I know all too well as a side effect from steroids. She looked exhausted and disgusted to be sitting in this chair. A Target worker was explaining how to use the chair and the two women with her I assumed were her sisters by their similarities.

As I walked past, I clearly heard, "Stop and share with her." I almost laughed out loud and said,"No way!" to myself. "Absolutely not," and kept walking. As I exited Target I found myself immediately heading once again for the entrance.

"No way, God! This is just too embarrassing. I can't start a conversation with a total stranger!" Next thing I know I'm standing in front of this total stranger, my mouth flies open and out comes these words...

"I have to share something with you. I read a story online recently about a woman who had been homebound for several months with chronic illness. She was finally able to make a trip to Wal Mart, only if she used an electric wheelchair to get around the store. She awkwardly maneuvered this bulky chair up and down the aisles running into end caps, knocking over product and even hitting a few other shoppers! She was embarrassed at first and then she began to think about all the time she'd spent unable to leave the house. She was thrilled to be out and made a conscious choice to be joyful and leave embarrassment behind. She was going to enjoy the moment regardless of how many shelves or shoppers she ran into. Instead of getting flustered when she crashed, she started yelling, "Woo hoo!" and having a total blast!

"So," I told my new Target friend , "Enjoy this moment riding on your new wheels and when you hit something yell 'Woo hoo!'instead of being embarrassed."

She looked at me with big tears in her eyes and said a weak "Woo hoo!" and whispered "Thank you."

As I left Target, I could hear three voices yelling "Woo hoo!" and laughing as the woman ran into the end of an aisle.

Today, I choose joy. "Woo hoo!" How about you?


Friday, April 25, 2008

Survival and Support

I've been spending time lately on the CIDP foundation website. I've heard some of the most amazing stories of survival and I'm in awe of the strength of these chronic disease survivors. If you're stopping by my blog from the forum, welcome! Put your feet up, grab a cup of coffee, and feel free to leave me a comment to let me know you were here. There's no substitute for support and we're in this together!

In trying to answer the meme questions in my last post, I realized I truly am a survivor. I always thought of that as bragging, but I don't really care what people think anymore. (I'm wearing big girl panties today!) Here's why: I am a survivor. You're reading this blog, which means you're likely a survivor as well. There's not one ounce of pride in that statement. My strength is not my own. In no way is my survival cause for pride. In every way is my survival a statement of faith. Leaning into my faith and relying on the Lord is my only means of survival. That may sound cliche, but it comes from my heart. My hope is that you too are leaning into your faith for survival.

Thursday, April 24, 2008

I've Been Tagged

It's official. I've been tagged by Alene over at Positively Alene

The rules are:

1. Write your own six-word memoir.

2. Post it on your blog and include a visual illustration if you'd like.

3. Link to the person who tagged you in your post.

4. Tag five more blogs with links.

5. Remember to leave a comment on the tagged blogs with an invitation to play.

Here are six words/phrases that best depict who I am:
1. Passionate about Jesus!
2. Wife and Mommy
3. Hopeful
6. Survivor

I'm tagging the following:




Friday, April 18, 2008

Final Post for Treatment Day

Turning in for the night, so this will be my final post today. I hope I've given enough information to those of you who requested it. As far as how I'm feeling right now, not bad. Tired, achy, and extremely sweaty. In fact, it's kind of gross! I'm headed for the shower and then to bed.

Many blessings to you!

Treatment Day Part 3

Just wanted to give a brief update on the side effects from today's infusion:

Racing heartbeat
Aching joints
Slight headache

Sounds pathetic, but it's really not that bad. I'm so thankful for this medicine! I'll make one more post later tonight.

Part Two

I forgot to take my pre-meds which consist of Tagamet and Benadryl before Randy started the iv. She reminded me just a few minutes after we got started, so I took them a little late. My blood pressure was lower than usual when we started this time. I think it was around 94 over 60. Unusual for me. I didn't have a good vein other than my right antecubital (google "antecubital") so it was hard to type as we went along. We did the 10 gram bottle first and about half way through it stopped running in. Somehow the tubing got kinked and started leaking. It only took a second to fix it and we completed that bottle. We did one of the 20 gram bottles next and this one went in without any complications at all. The last 20 gram bottle went in a little slower in order to tytrate down toward the end of the infusion. Chris brought home lunch for me and about thirty minutes after I ate, we were done!

My stomach's a bit upset and I'm drowsy from the Benadryl so I'm going to rest until time to pick up the kids from school.

I'll post more later.

Treatment Day

Good morning everyone! Here's what has happened so far...

I took the three vials out of the refrigerator at about 7:15 this morning. The IGG is very thick and extremely cold if I don't give it a little while to warm up before my infusion. The pharmacy sends a packet of medical supplies which I put away until treatment day. I got those out and laid them on the table for my nurse, Randy.

I quickly put a roast in the crock pot (not medical info, I know!) and then grabbed a couple of bottled waters. Staying hydrated before, during, and after a treatment seems to be beneficial for the migraines I get as a side effect. Anyway, I LOVE my morning coffee so I'm trying to drink that before Randy gets here and then I'll start on my water. She should be here in about fifteen minutes.

I'll keep you posted!

Thursday, April 17, 2008


As I said in my last post, I'm scheduled for an IVIG treatment tomorrow. I'm going to try something new this time around in order to answer questions from some of you. If my nurse is able to get a comfortable vein, I will be posting as we go along...sort of a play-by-play. If my veins are difficult I will have to wait until the treatment is over to post. So, I'll post my routine prior to the nurse arriving and keep you informed as much as possible along the way.

I hope to share the day with you tomorrow. See ya then!

Tuesday, April 15, 2008

Much Better

Today was much better than yesterday!

My strength is fading, but I was able to get more done both at work and at home than I did yesterday. I cooked a simple meal, Ellen (my oldest) cleaned the kitchen, and I was able to relax for about ten minutes after a full day at work. Luka (my youngest) wrote a song after she did her homework, so we spent some time recording her "masterpiece". It's so exciting to see the different passions our kids are developing.

We were blessed to buy a used Suburban this past weekend and I've noticed something most people would never even think about. It's been a physical adjustment for me to get used to getting in and out in a different way than I got in and out of my Caravan. You wouldn't think such a simple activity would be a big deal and it's not a problem. It's just an adjustment and with so little strength, it adds up at the end of the day. I'm having a treatment on Friday which will help immensely.

More on that later.

Monday, April 14, 2008

A Not So Good Day

Today was a "not so good" day.

I hate to admit it, but CIDP got the best of me today. Just walking was difficult. I was beyond exhausted after work and picking up the kids. I started supper and had to rest on the couch for about ten minutes. Just ten minutes didn't help much, but I was able to finish cooking and help the kids with homework. Everyone's on their own for the rest of the night. We'll see how that goes.

Looking at it with a positive spin...I get to read the book I've been dying to dive into! More about that later!

Sunday, April 13, 2008

Traveling and Laughter

We're back from a whirlwind trip to Dallas this weekend. We went up to pick up a used Suburban we purchased and we're thrilled with the truck, but exhausted from the trip!

If you've traveled with CIDP for any distance, you know it can be uncomfortable. If I sit for very long my symptoms increase and this can get extremely frustrating. We stopped more often on the way home, which helped, but traveling with CIDP is difficult no matter how many stops you make!

The truck has a DVD player in it with headsets which is something new for our family. The kids were watching a movie that I couldn't hear without a headset. All of a sudden, all three of them busted out in laughter at the movie they were watching. Without knowing what was so funny, Chris and I began laughing right along with them. We were laughing just because our kids were laughing and as a parent, there's not a more beautiful sound than your child's laughter.

I couldn't help but wonder if God feels the same when His children laugh. Does He laugh when I laugh? I believe He does. My parental love for my children pales in comparison to His love for me. He probably evens laugh when I make silly mistakes or act goofy, just like I do with my kids.

His loudest, strongest laugh undoubtedly comes when I delight in Him and draw near to Him. When my heart softens and I'm transparent and "real", His laughter must ring through heaven!

Hoping you find comfort in even the smallest laugh today!

Monday, April 7, 2008

We're All In This Together

God has been revealing amazing things to me lately regarding CIDP. Through this blog I've been challenged and stretched and it seems more challenges are in store. I hope to encourage others living with chronic illness and slowly God is revealing His plan as to how He wants me to do that.

If you're living with chronic illness or love someone living with chronic illness, would you leave me a comment? Let me know what encourages you and what discourages you. I'd love to hear your thoughts.

We're all in this together.

Tuesday, April 1, 2008

Acreedo Calling...

If I ignore it, maybe it'll go away.

That's what runs through my mind every month around this time. If I ignore the phone calls from Acreedo (pharmacy which provides my IVIG) maybe I won't need it anymore. You'd think a forty year old wouldn't think so childishly, but I do. There were two messages on my voice mail today from Acreedo, wanting to schedule my next infusion. I don't even want to think about that yet!

The research I've done on IVIG shows the importance of routine treatments. I need to put on my "big girl panties" as my friend, Alene would say and call them back. It's just a phone call for cryin' out loud!

Unfortunately, I've tried ignoring it and it doesn't go away. Maybe I should change my tactic and give big girl panties a try.