Saturday, March 29, 2008


I was holding Luka's hand today and noticed I could feel with my fingertips! I love it when there's just a little window of normalcy in my day. It's funny, but I get used to not feeling anything and I'm shocked when I do. So nice to feel my sweet child's hand. Thank you God, for small blessings.

Wednesday, March 26, 2008

It's Been Awhile

Hi there!

It's been awhile since my last post, but life is finally slowing down enough for me to write just a bit. I hate the word "busy", but I've been "knee deep" in our Easter plans at church. (which went fantastic, thanks for asking!) I can now take it easy for a day or two now that Easter is over.

I had family in from out of town for a few days and we had such a great time together! There's nothing like the blessing of a wonderful family. I'm so grateful.

I hope you enjoyed the Easter holiday and are rested up. For those of us with chronic disease, rest is crucial but I can't seem to get this through my thick skull!

I enjoyed getting to "sit and visit" with family and feel pretty good right now (other than being a little sleepy like the rest of America.) Enjoy your day and!

Monday, March 17, 2008

Friday's Infusion

What an eventful day Friday was!

I remembered to take the three vials of IGG out of the refrigerator first thing in the morning to let them warm up a little. I think I'm going to have to take it out even earlier next was still freezing!

Randi (my nurse) was right on time as usual. I know I've said it before, but she's the best. She's so thoughtful and incredibly skilled, not to mention I just love her to pieces! Usually she gets everything set up at my kitchen table while I finish up morning emails. When she's got everything set up, I go in the kitchen where she puts the needle in my arm and gets the IV going. Then, I move to the living room and get comfy!

This time, we hit a vein and blood went shooting everywhere! It definitely wasn't Randi's fault. It was beyond her control. Blood went all over my clothes, the floor, everywhere. It was pretty gross even to me and I have a strong stomach when it comes to blood. I wasn't worried about the blood or the mess, for that matter. What I was worried about was having to do the whole thing all over again. Luckily, Randi kept that from happening and soon it was business as usual.

I usually lay on the couch for the majority of the day. The treatment can make me dizzy, nauseous, and give me a terrible headache (as well as other fun side effects!) so I try to just watch tv or read. We're done in time for me to pick up my younger kids from school, but I don't feel well enough to drive any farther than that. Then, it's back to the couch for me!

A fellow blogger left me a comment recently, asking if I felt safe having IVIG at home. I wouldn't have felt safe having these infusions at home when I first started twelve years ago. I felt I was safer in the hospital if I were to have any type of reaction. After years of frustrating hospital visits and unsanitary conditions, I feel much safer at home. My nurse wears gloves, washes her hands, and uses the proper hygiene. In fact, as far as hygiene, home is much more sanitary. After having IVIG for so many years, my chances of allergic reaction are slim, although never zero. I feel safer with Randi than I would with a nurse in the hospital who wouldn't come for ten minutes after I pressed the call button! Safety with home infusion seems to depend entirely on personal circumstances.

As far as side effects this time, I've had pretty intense joint pain, but no headache. I can't complain although I feel like I've been hit by a truck...ha! God has provided a treatment that keeps me functioning and I'm living a blessed life!

Thursday, March 13, 2008

Thanks to my bloggy friend, Al, I'll be trying something new with my IVIG tomorrow. It seems an experienced nurse shared that, of all things, high fat snacks help during infusion. I have no idea how they help, but I sure will enjoy them!

My nurse is great about making sure the infusion doesn't go too fast. Usually we start no later than 9:00 a.m. and are finished around 2:00. I seem to be able to tolerate any length longer than four hours pretty well. It used to take eight hours and that was unbearable!

My sweet hubby usually calls during my infusion and asks if I need lunch. This is such a thoughtful thing for him to do considering his busy schedule at work. I'm so blessed! Not sure, but I'm thinking Jason's for hmm good! It's always better with a Diet Coke, but I gave those up. So glad I did because I feel much better now.

I'm ready to feel better, but I always hate to have IVIG. It gets old doing this month after month. I'm very grateful this works, though. Just ready for tomorrow and the next five days of feeling bad to be over with. Off to bed...I have to make sure my pajamas are clean and ready to wear during my infusion tomorrow! There's just something about my comfy pjs that make it all better!

Night nite.

Wednesday, March 12, 2008


My IVIG came today via FedEx. I'm so thankful to have this delivered to my door. It's so nice to be home while having a treatment and much more relaxing than a hospital. I encountered quite a few disturbing situations while receiving IVIG in local hospitals in the past. I'm blessed to be able to do this at home now.

Do others who receive IVIG do it at home? Infusion clinic? Hospital?

What do you do for premeds? I take Tylenol, Tagamet, steroid, and sometimes Benadryl. In recent months, I've found drinking plenty of water before, during, and after IVIG therapy works wonders. Does that work for others, too?

To keep the nausea to a minimum, I'm better off not having an empty stomach. I try to have light snacks during the infusion to ward off nausea. Doesn't always work, but sometimes I get lucky.

I find that sometimes even up to five days after a treatment, I get debilitating migraines. They usually last only a day or two, but they're miserable. That being said, the treatment is still worth it...the benefit outweighs the side effects any day!

What about you? I've heard from several of you with CIDP. Care to share how you beat IVIG side effects? What works best for you?

Tuesday, March 11, 2008

The Sock Search Continues

Awhile back, I shared my struggle to find comfy socks. Unfortunately, my search continues. I ordered a pair of so-called "diabetic" socks without lines. I had them on about ten minutes when my feet began to burn like fire! It was excruciating! I had ordered these online about four or five weeks ago and waited in anticipation for what I thought was going to be the "sock find" of the year...only to be extremely disappointed when they just didn't work for me. (For those of you unfamiliar with CIDP, our sensory is out of whack and can be extremely painful at times.)

If you have any suggestions or know where to find all-cotton, no seam, non-binding socks, please leave me a comment. I've really enjoyed your other suggestions.

If you're joining us from the Blog Party...glad you're here! Grab a cup of coffee and take a look around.

The sock search continues, my bloggy friends...

Friday, March 7, 2008

It's A Party!!

Ultimate Blog Party 2008

Welcome to the Ultimate Blog Party! I'm so glad you stopped by to see me!

My name is Kristen and I've lived with CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) for the past twelve years. This blog is about my life with CIDP and is meant to bring hope to those who struggle with any type of chronic illness or live with someone who does. I hope you'll join me on this journey...a journey of hope. Leave me a comment. I'd love to hear from you!

Wednesday, March 5, 2008

A Comfortable Day

I can't complain tonight and it feels so "normal" to say that.

My day was filled with only a moderate amount of pain...nothing major. It was warm enough outside to wear flip flops (woo hoo!), but not hot. I was able to wear comfy jeans and a t-shirt to the meetings and rehearsals I had today. This was just a comfortable day.

Days like this are few and far between where the numbness is manageable and the pain only moderate. Not having any symptoms to complain about is fantastic!

Thank you, Lord for a break in the CIDP madness.

Tuesday, March 4, 2008

Vitamins and CIDP


As with any illness, becoming educated about CIDP has given me power. Power to stand my ground when I disagree with a doctor. Power to fight with the insurance company. Power to demand quality health care from home health agencies. Power.

There are times though, even with the information I have about CIDP, when I don't have the knowledge and information I need. I need answers. No answers, no power. There are times when I have to realize no one knows the answer. CIDP is so rare, answers are sometimes scarce. I just have a hard time accepting that answer.

Today I'm struggling with a lack of knowledge. I have a medical question and I've heard contrary answers from seemingly qualified health professionals. My question is "Is it safe for CIDP patients to take daily multivitamins?" I understand there's a fine line for CIDP patients and vitamins. A fine line between helping and harming. On the other hand, how do I know where that line is? How can I be certain a multivitamin is strengthening the "right" part of my immune system and not the part that has gone haywire? Anyone have the answer?

For the past two weeks, I've been taking a multivitamin and a calcium supplement. I plan to continue taking both until I'm told otherwise and I'd love to hear what you think. Until then, a wonderful resource of knowledge I've found is

Monday, March 3, 2008

Your Comments

I'm so encouraged by the comments all of you have been leaving on my blog! It's been encouraging to hear from the past and encouraging as well to hear from new friends. I hope you're all encouraged somehow through this blog. It's important to me to share this journey with all of you. We ALL have struggles...some are physical, some emotional, relational, even spiritual. The important thing is this is a SHARED journey. Sharing my life with you is so scary, but amazingly refreshing at the same time. I hope you're encouraged because you are certainly encouraging to me. Have a great night!