CIDP And Me

Necessary?

2011-02-16T19:50:00.002-06:00

Please give me some time...

Time to search for answers to my questions...

Deep, meaningful, powerful questions...

Not really. Just questions like is this blog really necessary? Does it serve a purpose? Am I writing just to write or is it therapeutic for me or someone else? Is it necessary for my ego or my heart? Or a quiet heart that I don't even know is out there?

Patience please, my friends.

Where The Rubber Meets The Road

2010-10-09T10:25:00.003-05:00

This is where the rubber meets the road...when words are meaningless and actions prove "HOPE" is real! Today it's YOUR chance to share HOPE...

A dear friend of mine has breast cancer. She found out last week it has spread to her lymph nodes. She began chemotherapy this week.

What encouraging words can you share with her to reflect the HOPE that comes from Jesus Christ alone? Leave your encouraging thoughts for her here (comment) and you might just be the glimmer of HOPE she needs. Thank you, my hopeful friends!

With HOPE,
Kristen

Day 4: Your Secret Place

2010-10-04T20:13:00.003-05:00

Yesterday we talked about how important it is to stay "in touch" with God, to spend time connecting with Him. It's important to find a place for this connection, as well. So, where do you connect with God? Where do you seek Him and wait for Him to show up?

When my kids were younger, my private moments of connection with God were nowhere NEAR PRIVATE! Praying while changing diapers, feeding babies, watching Little Bear and Blue's Clues were my only time before pouring my exhausted body into bed at night.

Then when they were a little older, my time with God was in the living room after everyone was in bed asleep with a cup of coffee. I had many late, late nights back then!

During another season of my life, my kitchen table was my secret place with God where I could spread out my Bibles, study books and highlighters, etc. after the kids had gone to school.

Now that I'm working full time, my time with God is early in the wee hours of the morning and before going to bed at night. My place isn't quite as "ideal" as it used to me, but it's still special...just me and God. Only now there's a few more interruptions, but it works for me.

Where is your secret place? If you're not sure, spend some time finding a special place that works for you in the season of life you're in right now. Remember, it doesn't look the same for everyone. All that matters is that you "have" a place to meet with Him. A place to find hope when you're thanking Him for the many blessings in your life or crying out in desperation.

Where is your secret place where hope overflows from filling yourself up with God?

With HOPE,
Kristen

Day 3

2010-10-03T13:36:00.002-05:00

So, we've cried out to God and given Him our anger and frustration, our fear and our pain. Now what?

It's disappointing to be honest...it's disappointing to realize this isn't a "cure all". There isn't a one time fix where "poof!" now your life is hunky dory! Quite the opposite, it's a daily thing. So you've cried out and shared your pain, now it's crucial to keep the lines of communication open. We can't share our hearts with God once and expect that life will be grand!

It's just like a marriage...sharing the good and the bad. Communication is vital to the health of a marriage. You just can't stay connected unless you're communicating and spending time together. Keeping that line of communication open with God and spending time with Him is vital to a life of radical hope. Have you talked to Him today?

Tomorrow we'll talk about finding that special place to keep the lines of communication open...that special place where HOPE can be found.

With HOPE,
Kristen

Day 2

2010-10-03T13:17:00.002-05:00

Is it hard for you to express your anger or frustration to God? Do you hesitate to share your pain with Him?

Many of us struggle with letting God hear the cries of our heart. Not sure I understand why, when He already knows full well what those cries are! I believe He wants us to bring Him those cries. It's clearly not a "sin" to get angry and certainly not a "sin" to share that anger with God. He already knows how we feel. We sin when we make poor decisions in our anger...when our choices made in anger become ungodly choices. "In your anger, do not sin." Eph. 4:26

I was angry about being sick and angry that this was happening to me. Ever been there? That anger diminished after I expressed it to God. I can't say I don't have days where I feel it creeping up again, but anger doesn't control my life because I cried out and gave it to God and continue to give it to Him day after day.

Check your heart...are you angry because of your circumstances? Angry because someone broke your heart, angry because you lost your job, angry because your body is failing you? God is just waiting to hear from you.

With HOPE,
Kristen

Hope

2010-10-01T22:00:00.002-05:00

After being diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuropathy over 13 years ago, HOPE was the last thing from my mind! I was too sick to feel hopeful about anything! Until one day...I hit rock bottom. No really, rock bottom. I fell apart. It was the lowest time in my life and continues to be one of the strongest emotions I've ever experienced. I've never felt such despair and agony in my life. I must've been in that shower for over an hour...just crying my eyes out, pouring my heart out to God, screaming at Him, asking Him "Why? What did I do to deserve this?"

Have you ever felt such despair? Ever been through an experience where HOPE was nowhere in sight? I'm sure you have...we ALL have. If you've never cried out to God with your despair, I challenge you to do that today. It's the first step to a life of RADICAL HOPE. Spend some time in the book of Job (chapters 29-31) and read how Job cried out to God, how he wrestled with his despair and the goodness of God. Then, don't be afraid to cry out to God yourself.

We'll talk more about this tomorrow...get a good night's sleep!

With HOPE,

Kristen

31 Days to Radical Hope

2010-09-30T21:57:00.004-05:00

Have you ever felt like you just needed someone to help you get started on the right path? I sure have. Several times in my life, I've needed someone to just give me a swift kick in the pants to get me going!

If you're feeling that way now, join me beginning October 1, 2010 for 31 Days to Radical Hope, 31 doses of daily inspiration and hope...it may just be the kick in the pants we need to get going!

31 days of short inspirational thoughts on living a life of RADICAL HOPE. What does that look like? How do I get it? Tune in October 1st.

If you're in the Corpus Christi area, join me at the Living the Life Women's Conference! For more information, go to http://www.livingthelifecc.com/.

See you then!

With hope,

Kristen

More Pics

2010-06-16T22:09:00.001-05:00

More Horseback Riding

2010-06-16T22:06:00.002-05:00

Garden of the Gods on Horseback

2010-06-16T22:02:00.002-05:00

More Incline Pics

2010-06-16T21:59:00.002-05:00

Chris & DiMarco's Hike Up Pike's Peak Incline Trail

2010-06-16T21:54:00.001-05:00

Fun in the sun

2010-06-15T23:00:00.000-05:00

More Pikes Peak Pics

2010-06-15T22:56:00.002-05:00

Pikes Peak Pics

2010-06-15T22:48:00.000-05:00

More from The Royal Gorge

2010-06-15T22:44:00.002-05:00

Royal Gorge

2010-06-15T22:36:00.001-05:00

View From Our Balcony

2010-06-15T22:27:00.002-05:00

Post Amarillo

2010-06-15T21:40:00.005-05:00

Capulin Volcano was an exciting first for all of us. We've never seen a volcano (dormant or otherwise).

I was amazed by all the wind turbines outside of Amarillo. (I won't bore you with those pictures.)I'm curious who gets the benefit of all the energy produced there. It's almost surreal how huge they are.

We laughed hysterically at one point out in West Texas that we were the only ones out there and all we could find was old fashioned country music on the radio. Not current country either, we're talking "My dog died and all I have is my truck" country.

The greatest moment was when we saw the landscape begin to change and mountains appear on the horizon. We drove through two areas with signs saying "Warning: Do not pick up hitchhikers. State prison area." Kids thought that was exciting. We drove through quite a few areas that said "Speed monitored by aircraft." I think this was only in Colorado. That's something I've never seen before.

The most beautiful thing up until this point was Rotan pass...absolutely gorgeous! The only mountains my kids have ever seen is the hills in Minnesota. It was incredible and hearing their excitement was worth every penny this trip cost.

Driving into Colorado Springs, I felt like a kid at Christmas. I just couldn't wait to get to the resort. I was excited about the fun we had planned, but scared the resort wouldn't be what I thought it would be. After all, I found it online and you just never know about making reservations based on what you read online. This time, I got lucky! Using the GPS we borrowed from a dear friend, we turned the corner to the most beautiful resort! We pulled into Cheyenne Mountain Resort and were greeted by two smiling attendants and the greenest, lushest landscape you can even imagine! The lobby was like an upscale ski chalet (even though I don't have a clue what that looks like!)

The front desk was professional, friendly and the place was spotless. I felt like the staff was actually there for US, not just doing a job. Our room was in the Buffalo Creek Lodge, great parking spot, great location. Our room was perfect and we were amazed at the view from our balcony.

The toilet had issues and I called the front desk. Literally, five minutes after I placed the call, a repairman was at my door. Ten minutes later, it worked perfectly. Impeccable service here.

I'm posting pictures from now on with just a bit of text. I'll write more details later.

Amarillo by mornin'

2010-06-15T21:23:00.003-05:00

Our journey began on Sunday morning at 7 a.m. Not a bad start...left on time, only had to run back for forgotten items once, and the kids were fighting...good start!

We had only been on the road for twenty minutes when Luka broke into the "snack bag". She just couldn't wait to dig through all the snacks I packed and see what "goodies" she could find.

We made it to Amarillo by about 6:30 and stayed in a Days Inn (that I "pricelined"). Not too bad for the price, but we were bumping into each other it was so small. We ate a late supper at Cracker Barrel (blech...lousy waitress, but we had fun!)

Later that night, Luka and DiMarco had a great time in the pool. I took pictures, but all I had was my phone and I can't post those here.

After a quick breakfast, we were on the road around 7:30 a.m. Off to Colorado!!

Colorado Family Vacation

2010-06-15T21:20:00.002-05:00

Our family decided (okay, I decided) Colorado would be a fun place to take the kids for family vacation this year. What follows is a silly snapshot into our trip...

My Heart Breaks...

2009-11-07T22:35:00.003-06:00

My youngest has had swine flu this past week and is finally starting to come around. It's exhausting when your kiddos are sick! It's one thing for ME to live with chronic illness, but it would be something entirely different if any of my children did.

Tonight I'm thinking about those of you who have emailed me worried about your sick children and my heart is breaking for you. I can't begin to know what that must be like.

Please know I'm praying for you and your sweet children and wishing you refreshing hope.

With HOPE,
Kristen

Just an update...

2009-08-14T19:24:00.002-05:00

Had a treatment last night after work. I'm so blessed with a wonderful nurse who tries to work around my crazy schedule! Felt fine after the IVIG, but tossed and turned all night. Had a little trouble getting up this morning, but made it to work...early even! Queasy today, but no migraine. Just a little headache and I can't complain at all. Luka's giving me a fantastic shoulder massage in exchange for a milkshake. Can't beat that!

With hope,

Kristen

Do You Remember?

2009-06-25T23:31:00.002-05:00

I don't have a particular fondness for Michael Jackson or Farrah Fawcett, but talk of their deaths has been the focus of just about every news clip I've seen today. If you were a fan of either of these celebrities, chances are you'll always remember exactly where you were today when you heard the news of their passing.

I remember when Elvis Presley died. I was home watching tv with my mom and dad who were huge fans and both cried. (Yes, it's true...they really cried). I remember where I was when the space shuttle exploded. I was at JCPenney's after a college class. I remember where I was when 9-11 began to unfold. I was walking through my bedroom after taking Ellen to school and caught it on ABC.

Do you remember when you first heard about Jesus? Do you remember the first time you realized how much he loved you? Do you remember when you felt as though you would simply burst with passion for him? Do you remember when you walked into the water on the day you were baptized?

I remember it like it was yesterday. Just thinking about it leaves me breathless and my eyes well up with tears. If you haven't thought about it for years, take a moment and think back to that day when you let down the walls around your heart. Remember how it felt to trust so completely? Remember that child-like faith and reckless abandon? Do you remember?

I remember and I never want to forget.

With hope,
Kristen

When it's time to change, then it's time to change!

2009-06-10T19:22:00.003-05:00

Remember the Brady Bunch episode where the Brady kids are in the recording studio singing "When it's time to change, then it's time to change. Don't fight the tide, come along for the ride. Can't you see? When it's time to change you've got to rearrange who you are into what you're gonna be. Sha na na na na na...."

Well, life has certainly changed. Whew! Hold on a minute while I catch my breath! Life doesn't stay the same for long these days, does it? I thought I'd just share some of the changes in my life in the recent months with you...

The first drastic change I experienced wasn't quite as light-hearted as the Brady Bunch episode...It was heartbreaking for me. My family and I left the church we loved dearly and began the painful, dreaded search for a new church home. We had been part of this church for many years and our children never knew anyplace else. Many tears were shed in this decision, but looking back now I know it was the right decision for all of us. Difficult, but right for everyone involved including the loved ones we left behind.

In addition to leaving our family, I was also leaving my job. A job that I was passionate about for countless reasons. This was a huge financial blow to my little family and one we are still recovering from.

Shortly after leaving my job, my three kids and I were in a terrible car accident. All four of us walked away by the grace of God, but I was very slow to recover and still deal with a few issues. Thankfully though my kids were all okay after a couple months of physical therapy.

I started a new job (shortly after the accident) which I'm enjoying. I'm the Quality Control Manager for a rental management company here in our coastal city. I handle vacation rentals of all kinds and am learning way more than my little brain can handle. Great co-workers and one amazing boss and I still get off in time to pick up my kids from school (most days!)! Who could ask for more?

We have found a new church home and are starting to let our guard down. I've been a spectator for awhile now while I've healed and restored my mind and heart. Still not quite ready to get in the game, but creeping ever closer to the scrimmage line.

Through all of this my CIDP has flared more than you can imagine. No feeling in my back, weakness in my neck, tremendous joint pain. My body's had such a hard time getting used to working and for awhile there I didn't think I was going to be physically able to do it. At night I'm so tired I could just cry, but I seem to be less and less tired at the end of the day as time goes on. This gives me hope that my body will eventually adjust. For now, I just keep rolling along! Still having monthly IVIG infusions and praying for a cure.

And you? I know I'm not the only one who's life has changed lately. What's going on in your little corner of the world? I'd love to hear about it. And Robin, thanks for the gentle nudge, my sweet friend!
Remember, when it's time to change...you've got to rearrange who you are into what you're gonna be!

With hope,
Kristen

Shampoo and Caviar

2009-06-10T19:05:00.004-05:00

Running errands for condo owners awhile ago, I was in an area of town I'm not quite familiar with. Anytime I'm in a new area I find myself reading every imaginable sign until I'm on overload! You might think I'm crazy, but it's exhausting to go to a new city just because of all the new signs! You think I'm kidding, but it's true. I don't wanna miss a thing!

Trying to take in all the signage in this unfamiliar part of town, there was one that caught my eye. It read "Shampoo and Caviar". Interesting concept, isn't it? Bringing the finest to the simplest. Bringing the extraordinary to the ordinary. Shampoo is definitely not extravagant, but caviar certainly is.

I thought of how it's the same with me (and you!) and Jesus. I'm nothing more than a simple, ordinary shampoo. Jesus on the other hand is the finest, most extraordinary caviar. No one would've put the two of us together or even imagined the caviar would want to be associated with the shampoo. No one would've assumed that we even belong in the same sentence, much less on the same sign.

Thank you Jesus for being this shampoo's caviar.

Who Knew Things Could Change So Fast?

2009-04-06T23:02:00.002-05:00

Hi Friends!

Who knew life could change so fast? Ha! My world has changed drastically since my last post and I can't wait to tell you all about it...some good, some bad. Such is life!

I'll be back in a few days to fill you in on all the details.

With hope,
Kristen

Welcome to the party!

2009-03-20T09:27:00.002-05:00

Thanks for stopping by for the Ultimate Blog Party! Grab a cup of coffee and chat for awhile! I'm Kristen and I write about living with chronic illness and REFRESHING HOPE. Thanks for coming!

With HOPE,
Kristen

After the Diagnosis

2009-03-16T12:22:00.004-05:00

On Tuesday (tomorrow) on Oprah, Dr. Oz will report on what happens "After the Diagnosis" with special guest, Montel Williams. I don't normally recommend anything on tv unless I've watched it first, but this looks very promising. Check out the link below and see if it's something you might find interesting. I'm thankful they're interviewing someone who's closer to my age than what I usually see when chronic illness is discussed. Hopefully, this will be honest and not sensationalized. Transparency would be refreshing to see on tv!

http://www.oprah.com/dated/oprahshow/oprahshow-20090305-montel-williams

With HOPE,
Kristen

Surprise!

2009-03-14T23:25:00.005-05:00

When I was first diagnosed with CIDP, the future was incredibly scary and uncertain. I couldn't count on much...other than change. Changes in medication, treatment, changes in my ability, strength, changes in everything. One thing I wasn't expecting though were the surprises. If you live with chronic illness, you know the surprises I'm referring to.

I was surprised to find that others didn't see me as the same woman anymore. I was now the one who couldn't have lunch at the drop of a hat or the mom who couldn't make a sandwich for her three year old. I was no longer the same woman in the eyes of others. Surprise!

I soon found out who would surprise me as well. Who was it that loved me just for being ME and who loved me for the person I used to be? Family would be my biggest surprise. The strength my mom showed was unimaginable, but the ignorance of others I loved dearly was devastating. Their reaction to me still hurts to this very day. Surprise!

Perhaps the biggest surprise of all came out of nowhere. The biggest surprise was hope, refreshing hope. Even when faced with a rare disease I was filled with an inexplicable hope. Even when family and friends reacted in fear and ignorance, I was filled with hope. Hope for a cure, hope for remission, hope for relief from pain, hope I would again feel my hands and feet, hope for something bigger and more meaningful than just my simple existence, hope for eternity in heaven.

I pray right now you are living a life filled with refreshing hope. A hope that washes over you like a fresh rain. A hope that quenches a thirst deep within you. A hope that comes only from a relationship with Jesus.

Refreshing hope...what a beautiful surprise!

Sally's Story

2009-03-11T14:07:00.003-05:00

I want to share an email I received from my new CIDP friend, Sally. She and I have shared emails and she writes about her CIDP experience below. I was honored when Sally contacted me as she has not communicated with others with this disease. If you would like to send her an encouraging note, please email it to me HERE and I will forward it on to her. Just wanted to post this because the unlikeliest of us benefit when someone shares their story. A special thank you to Sally for allowing me to share this!

Again, CLICK HERE to send Sally a note.

With hope,
Kristen

In May of last year, I was suffering from a pulmonary disease that was later diagnosed by lung biopsy as Pulmonary Fibrosis, another rare disease. It's where the lung spontaneously starts scarring, which causes the lung tissue to get very stiff, and air can't pass through as it should. There is no real known cause, and, unfortunately, the only cure is lung transplant. That would be a long way off for me.... I went to Mayo Clinic, Jacksonville, Florida, for a regular appointment just prior to having the lung biopsy. I was complaining of weakness, numbness and tingling in my lower legs and feet, and forearms and hands.Pulmonology wanted to check it out before they did surgery, so they got me in to see a Mayo Neurologist that same day. Well, the docs did all kinds of nerve testing and a spinal tap, and pronounced me with Guillian-Barre. They then admitted me to the hospital (a brand new one at Mayo) and administered 5 days of IVIg. I have no idea what kind they were using. At any rate, I was CURED !!!, or so I thought. All the feeling came back into my hands and feet, and the tingling seemed to get better. I was instructed to be aware of the symptoms. and if they should come back, I was to contact Mayo again. Well, they did come back......about 6 weeks later I felt the tingly feeling in my hands again, so Mayo had me come back there for a 3 day dose of IVIg, which seemed to relive my symptoms. They discharged me on a "maintenance dose" of 3 days, once a month, to be done by home health because the local hospitals didn't have enough supply. I do know that home health was using GammaGuard. It did seem that just when it was about time for the infusion, I would have some return of symptoms, but not really significant, and it would always go away after treatment. Then I turned 65 (Ugh) in November and went on Medicare and a supplemental insurance policy. They would not pay for in home infusions, so I had to start going to our local hospital infusion center to get my treatments once a month. I have no idea what brand of IVIg they used, but I'm going to call today and see about getting copies of my records, which should show the brand name. None of my doctors have mentioned the Brand issue, and I find it very intriguing. Just last month, the treatment I had at the beginning of the month did not work, and I got no relief. In fact, I became weaker and weaker as the days went by. I returned to Mayo, and they felt I should try another infusion, since I had responded so well before, so that was accomplished within a few days. No response again....and great difficulty contacting my doctor at Mayo. I was so frustrated ! I've forgotten to tell you that I am on high doses of Prednisone for the Pulmonary Fibrosis, as well as the CIDP. I had a Pulmonary relapse in January, spent 5 days in hospital getting better, and was discharged on 60 mg Prednisone for 2 weeks, then 50 mg for 2 weeks, 40 mg for 2 weeks and now I'm on 30 mg. Will "step down" once more on Monday to 20 mg a day, and will stay on that dose for 6 months. My head looks and feels like a bowling ball, and I'm really having trouble with swelling. The weight gain is depressing for one who started out too heavy in the first place! I finally spoke with my doctor, and they have EMG testing scheduled for next Tuesday. He says that since the IVIg isn't working, there is nothing they can do for me if the testing doesn't show that I need further treatment. I asked about plasma-exchange and paraphrases, but he didn't even want to talk about it until I've had this testing done. I can't believe there's nothing they can do, and now that I know about the Brand issue and possibly having infusions more often, at least I can have a rebuttal for his "nothing they can do" statement. The worst symptom I have is extreme weakness in my knees, lower legs and feet. I have no feeling in the toes and the small ball right under my toes. I have no knee jerk reflex and no ankle reflex. I have a problem with balance, especially when turning around or turning to walk in a different direction. I do use a cane, and on bad days I use a rolling walker. I'm also on a long oxygen tube that can go throughout the house, so I must be very careful not to trip over that. I did have a fall yesterday.....onto soft carpet, Thank God! Just a little rug burn on my right knee and a couple bruises. It happened in our walk in closet when I tried to turn around to hang something on the rack. This is only the 2nd time I have fallen. My hands tingle a lot, and I've lost the dexterity in my fingers. Magazines slip out of my hands, and I drop things more often. I am currently doing Physical Therapy, but it's not going too well because I tire so easily. I feel like such a wimp....the exercises are not difficult, and I'm only up to 10 so far, but I just get so tired! (This is my second round of PT, and I requested it to try and keep my muscles in tone. I would like to go back to Pulmonary Therapy, but I can't walk on the treadmill right now (obviously). I'm going to start the Imuran when my husband gets home this weekend. (He's a retired physicist, who's following a life long dream of being a long distance truck driver......and he loves it!). I'm also to have an inhaled medication, Pentamidine, once a month the ward off the old PCP bug. I hope to be able to reduce the Prednisone even more one I get "settled" on the Imuran. Thank you for letting me "bend your ear". I probably should have put this on your blog page, but I've never done that before and not quite sure how to proceed. If you think it might help someone else, please feel free to cut and paste it there. Sincerely,Sally

I Am Tired

2009-03-10T09:15:00.006-05:00

For the past few days I've been dealing with mindblowing exhaustion. It's not the exhaustion that comes from "doing" too much or running myself ragged, but rather the exhaustion that comes from CIDP. It's an inexplicable feeling, but one many can relate to. Exhaustion/severe fatigue is a symptom of many chronic illnesses. Mine tends to manifest itself more as weakness, but this month fatigue has reared it's ugly head.

I'm not talking about "I need to take a quick nap" type of exhaustion. I'm talking about "Crawl into a corner anywhere" type of exhaustion. Every step requires concentration and determination. Chewing becomes a nuisance and it's easier to skip meals. Driving kids to school is difficult because it's hard to hold down the pedals for an extended period of time. Walking becomes a planned event.

THAT'S the type of exhaustion I'm referring to. It's just the way things are. It's just a fact of life for me and for many others. So what can we do to live with this? The three suggestions below are just a few I'm going to focus on today.

Surviving exhaustion/fatigue:

1. Meditate on God's Word. Mt. 11:28-30 is already running through my mind this morning and will be the promise I focus on today.

2. Pray. I keep a constant conversation going with God on days like these (and many other days!). I talk to him about everything and listen for Him to talk to me.

3. Watch encouraging tv/movies. When I'm too weak to hold a book or the laptop, I turn on the tv and find an encouraging show to watch. Redbox is a great inexpensive way to keep movies on hand for days like this.

Please let me know if I can encourage you today. I would love to pray for you by name.

With Hope,

Kristen

It's A Girl Thing!

2009-02-27T11:01:00.006-06:00

Last night, the leaders of It's A Girl Thing held a dinner for all their volunteers and speakers. It was awesome to be with such amazing women! It was a pleasure to finally meet Nancy Darnell face to face after numerous phone calls and emails. What a great woman of God!

If you haven't already got your ticket, you'll definitely want to be there! Teenage girls (high school and middle school), youth/student leaders and volunteers, mentors, and moms will be encouraged, informed, and uplifted. Ayeisha Woods and Jenny Broughton will be there! Wow!

There are many breakout sessions on Saturday to choose from. I'm leading a session entitled "Refreshing Hope: Uncovering Three Keys to Raising Teenage Daughters While Living With Chronic Illness". I would love to have you join me if you're in the area.

Check out http://www.itsagirlthingconference.org/

With HOPE,
Kristen

Crawling into my cave

2009-02-25T21:46:00.005-06:00

Without going into the gorey details, my church life has recently changed dramatically and it has been extremely painful. I've shared before how I tend to withdraw when I'm going through a difficult patch and this time is no different. I find myself not answering phone calls, saying "No thanks" to lunch invites, and basically crawling into my cave. Call it hibernating, pouting, or self-preservation. The fact remains, this is my natural tendency.

I've tried not do that this time and have done fairly well. I have my moments, though and today was one of those moments. Our small group meets on Wednesday nights. It's just a group of us who've been friends for years and our families get together for uplifting, encouraging Bible study.

Today, I didn't want to go. I just wanted to hide from the uncertainty, the pain, and just do my own thing. Luckily, my friends didn't let me off the hook that easily and my family and I went after all. I was quiet through the entire meeting because I was fighting back tears. Tears of anger, betrayal, grief...but more than that...tears of thankfulness. I'm thankful for TRUE community and family. I'm thankful for the love of family that exists based on our shared belief in Jesus and that has grown through living our lives together. I was overwhelmingly uplifted and encouraged just by being there.

The same can be true in dealing with chronic illness. It's extremely important to stay connected. Isolation can be devastating and lead to depression in some cases. Staying connected to friends, family, even online friends can be a tremendous blessing. I encourage you to reach out even when you don't "feel like it". Pick up the phone, say "yes" to lunch invitations, even email or visit forums or health blogs. Even if it means stepping out of your comfort zone, don't allow isolation creep into your life with chronic illness.

I'd love to hear what's worked for you and how you've stayed connected to others. Email me (kristenreyna at gmail dot com) or leave me a comment.

With HOPE,
Kristen

Put on a happy face

2009-02-23T08:47:00.002-06:00

Well girls...this is one of those days.

A day when I know I've got to suck it up, put on my big girl panties and put on a happy face. I can take charge of my own life and choose joy or I can wallow in self pity.

Today, I choose joy! What about you? Are you going to allow your symptoms, your financial situation, or even the rest of the world determine your attitude today?

Suck it up, put on your big girl panties and your happy face. I'm not saying that's easy to do because it's not. "Easy" would be wallowing in self pity today. If you find you can't do it alone today, email me and we can find strength together.

Don't fake it, but make the choice to find joy this morning!

With hope,
Kristen

What A Weekend!

2009-02-10T10:22:00.002-06:00

Welcome to my new Dallas and Plano friends! I was honored to spend time with you this weekend and so encouraged by you!

I was blessed to participate in a Women's Conference last weekend held in Dallas and Plano and it was fantastic! I met so many new friends and was tremendously blessed! I hope to have pictures up soon, so be sure to check back.

I led two breakout sessions, gave a talk in the main arena, and did two of my original dramas as well as shared songs. I was tremendously encouraged by the hearts of my new friends and amazed at how God brings us together through events like this one.

MacKenzie, you've been on my heart since Saturday. I'm praying for you. Your courage and your faith in God is inspiring. Hope to hear from you!

To those who shared their personal stories of illness with me, I'm truly blessed and honored you would share such intimate experiences with me. I would love to hear how things are going for you. Leave me a comment or send me an email anytime! It became even clearer to me this weekend to continue sharing about my illness and the HOPE I've found.

God is good and he never leaves us without refreshing hope. Embrace the hope that comes only from HIM and let's walk together on this journey!

With HOPE,
Kristen

Need Your Help

2009-01-26T18:17:00.002-06:00

I'm busy preparing for Refreshing Hope which begins next Monday. It's a motivational, inspirational class for women living with chronic illness. I can't wait to get started and next Monday will be our first meeting.

That's where YOU come in! If you live with a chronic illness, please consider leaving a comment for me in answer to the following question:

What is the ONE thing you do for yourself that makes living with chronic illness just a bit easier?

Now I'm not saying anything makes living with illness EASY, but what is it you do for yourself that takes the edge off just a bit? I have never been much for pampering myself, but after living with CIDP for many years, having a pedicure is something I do for myself that makes life easier for me. It's a treat and it's a healthy thing for me.

Now it's your turn!

What is the ONE thing you do for yourself that makes living with chronic illness easier?

With HOPE,
Kristen

Shopping, Shopping, Shopping!

2008-11-28T18:25:00.005-06:00

I'm one of the crazy shoppers who gets up the day after Thanksgiving, before the crack of dawn and heads out for the deal of a lifetime! This year was no exception.

I got up at 3:15 a.m. and after a quick shower and ten minutes of being sick to my stomach...I headed to Kohl's to stand in line with all the other deal seekers! (I'm being honest about the nausea because this is a CIDP blog and I'm trying desperately to tell it like it REALLY is. I'm not trying to gross you out!)

I stood in line at Kohl's with four or five hilarious ladies who were total strangers, but we were buddies after experiencing the long wait together. It occurred to me after twenty minutes or so, I was standing outside Keva Juice and it should have been open! A delicious smoothie is exactly what deal-seeking women need, isn't it? Hmm...maybe they'll be open next year.

After 45 minutes of waiting, the doors opened and we formed a human shield to keep out those who tried to cut in line. I kid you not! It was like something out of a movie. My new friends hollered to me to find them in the checkout line and they would save me a place in line. I found exactly what I was looking for and was out of there in 15 minutes. (BTW, I bought a KitchenAid set of knives, regularly priced 149.99. My price....insert drum roll....29.99. Oh yeah baby!) I would say this caused a perk in my step, but by now I was dragging my left foot off and on but determined to keep going!

Next stop...JCP...not very exciting. Bought DiMarco one gift, left without anything exciting and caught my breath.

Next stop...Target! I sucked down a bottled water and took my place in line where I stood for over an hour. I listened to four teenage girls behind me and learned some new cuss words and new ways to use some old ones. After the initial shock wore off, we chatted for awhile and they were actually very sweet girls. Despite their harsh exterior they seemed so young.

Target was marvelous when it came to customer service today. Lines were easy to maneuver outside and employees even came out and walked down the line asking shoppers if they had any questions or needed to know where to find an item. Very cool to this weary shopper! On Black Friday, you never know where things will be located in a store. One woman asked where to find a vacuum and the employee told her the boys department. Who would've known? Kudos to Target for customer service this morning and I actually found everything I went for i-n s-t-o-c-k! Can I get a woohoo?

A group of late arriving shoppers tried to rush the door at the last minute and there was an absolute revolt by those who had waited in line. It was hilarious! It was interesting to watch people come together in such a funny situation. Black Friday is the perfect day to study people.

I drug my weary bones back home by 7:00 and crawled back into my comfy bed and slept like a rock, only to get up and do it all over again with my mom several hours later. I can hardly move now. Literally. My legs feel like they weigh 200 pounds each and my hands are ridiculously numb. Such is the life when shopping with CIDP, but boy oh boy was it fun!

With hope,
Kristen

My New Bling!

2008-11-17T18:25:00.000-06:00

Melie, Would you email me? kristen (at) kristenreyna (dot) com. Thanks!

Thanks to those who left comments about my wedding ring. Your thoughts were so encouraging and I wanted to share my new bling with you!

Here's a tiny picture of my new wedding ring. Yes, I went over my 10.00 budget and actually spent 29.00 at Dustee's for this baby. Love it! I'm not sure I need a real diamond. *grin*

With hope,
Kristen

Tears and Pride

2008-11-05T20:41:00.008-06:00

Regardless of your political views, last night was a pivotal moment in history. As my oldest daughter and I were watching the election coverage, I felt as though I was witnessing a piece of American history in the making. It was almost surreal. I have to admit, I was moved to tears.

Why? For starters, I love this country. No, I'm not always in agreement with governmental decisions and I'm often indifferent to political issues. But I'm honored to live here in the United States and privileged to live in freedom. Privileged.

I don't care who you voted for. Forgive me, but I honestly don't and I don't think you should care who I voted for. Whether my candidate won or didn't was not the reason for my tears.

I cried because my Nana wasn't alive to witness the election. You see, after the death of my maternal grandfather, my Nana remarried and her second husband was black. That's right, she married a black man. In her day that was unheard of. She was the recipient of hatred and ignorance and my mother and her sisters lived in fear for a period of time. Whether noble or otherwise, Nana lived with pride in her decisions. Her marriage wasn't a perfect one, but despite the discrimination she experienced she was a proud woman.

Funny thing was, it wasn't until I was in the seventh grade that I became aware that not every family was of mixed heritage. I literally thought this was the way every family lived.

As an Anglo woman married to a Hispanic man, I've experienced discrimination although it pales in comparison to what Nana experienced. I've never lived in fear and am proud to live in a part of the U.S. where this is considered the norm.

What saddens me more perhaps than the issue of racial discrimination is the fact that I've experienced more discrimination within the walls of the "church" than anywhere else. The fact that my opinion carries less weight than a man's opinion cuts me to the core and continues to be a source of personal, private grief in my life.

I pray my daughters will never experience what I have, just as Nana prayed her grandchildren would never experience the discrimination she endured.

I cried last night because for those living with chronic illness, a change in our country's leadership can have a dramatic effect on our lives...health care, treatment, insurance, etc. I cried tonight for those who were watching in fear.

I cried because we've come so far as a country and have made huge strides in the area of prejudice. I cried with pride because one man, who years ago would've been forced to ride in the back of the bus, is now given the same rights as any other man. I cried watching the faces of those who've endured hatred and ignorance light up with pride.

I cried because of the magnitude of this election's outcome, no matter which candidate I supported.

How could you not be moved to tears?

With hope,
Kristen

Living the Life Conference

2008-10-22T16:50:00.008-05:00

Although a bit overdue, I wanted to share my Living the Life weekend with you. Hopefully next October you'll share the weekend with me!

Friday night was so inspiring. Seeing all the women arrive was exciting and scary all at the same time! The James Roots Band opened the weekend and they are just plain gifted! Such passion. How cool that men are excited to participate in a Women's Conference! The only woman in the band, Molly Richey (bass player and vocalist) has one of the sweetest hearts and a sweet voice as well.

The speakers were fantastic both Friday and Saturday. I was blown away by the talent in one city! I'm still amazed at the organizational skills and talents of Rochelle Roots. Most of all, her humility shines through.

I performed Dirty Little Secrets, an original drama on Friday night. I first performed this drama at the SHE Fellowship Conference in 2006. It's my very first original drama. Thanks to Alene for encouraging a dream.

I met some wonderful ladies on Friday night at my table. Thanks to those of you who stopped by and introduced yourself. Thanks to my sweet daughter, Ellen and my wonderful friends Tabatha and Susan for working my table! You gals are the best!

Saturday started out with my friend Susan getting her finger severed in a door...yikes! Boy is she tough! If I'm ever in an emergency situation, someone get me Susan! After a visit to the ER, her finger was reattached and she never once complained. She even took pictures with her own cell phone! Crazy woman!

I was privileged to lead a break out session with my talented friend Alene. Speaking to women is definitely her gift and I was excited to get to share the stage with her. Thanks again to Amanda for your encouraging email about our break out session!

Right before Laura's amazing talk, I performed "Change Your Pajamas" and was accompanied by Guy Boatman on the keyboard. I was honored he would agree to play and hope to work with him again soon. He and his precious wife, Theresa just became the proud parents of a beautiful baby boy! If you liked Guy's music, check back soon for upcoming cd information you won't want to miss!

I was so excited to meet so many new friends at the conference and to have lunch with my new friends, Mary and Shonda. These ladies have an amazing passion for the Lord and we had such fun together. I hope to get the chance to spend time with both of them in the very near future. Check out Shonda's blog for conference pictures. There's even one of my in my silly pajamas near the end of the slideshow!

A very special thank you to those of you who shared your chronic illness stories with me at the conference. The woman who shared of her MS, I'm still praying for you! To the woman with breast cancer, keep fighting! To the woman who shared her battle with lupus, the woman with fibromyalgia, the woman with chronic pain, the woman with depression...I think of you every day. I pray for you. I love hearing from you. I will always love hearing from you. I'm standing with you...always.

With hope,
Kristen

Webkinz

2008-10-11T08:30:00.003-05:00

Thanks to those of you who asked how I'm feeling...I'm much better! My breathing was a bit annoying, but it only lasted for one day.

I'm up and at it this morning preparing to help at Webkinz Live! Our church is doing a neighborhood event for kids and we're expecting hundreds of kiddos. I'll be doing registration because that's just my speed...slow, sitting down, and hopefully in the shade. I'll let you know how it goes.

I want to post about the Living the Life Conference from Oct. 3-4, but I was hoping to show pictures. I'll get that out very soon! It was an awesome weekend!

I hope today you find joy and peace. Even in the midst of illness, we can choose to live with joy. Ask me how.

With hope,
Kristen

Huffing and Puffing

2008-10-08T17:47:00.002-05:00

I'm huffing and puffing today to breathe so not posting much until tomorrow. Until then, have an awesome day filled with HOPE!
Love,
Kristen

Broken, But Eternal

2008-09-26T19:16:00.006-05:00

I'm not going to cry as I type this post. Okay, maybe just a little.

Because of my CIDP (chronic inflammatory demyelinating polyneuropathy), I have inflammation. Sometimes I have mucho inflammation. For the past two years, my wedding ring has been so tight I can't get it off. Can you see where this is going? I mean, can't get it off regardless of what I try. My husband has said for two years, "That ring will have to come off at some point. You can't live like that much longer."

Two years later and he came home from work yesterday to find my finger red, inflamed and just gross-looking. I pulled out all the stops..."It'll be better tomorrow", "You'll cut my finger if you try to cut it off", "Let's just wait a couple of hours". You name it, I said it.

It didn't work. He wasn't backing down. So he and DiMarco went out to the garage to hunt for wire cutters and I hid. Not very well because they found me. It took awhile, but Chris cut it off and I cried like a baby. Not because it hurt. It didn't hurt one bit. I cried because...well, I don't really know why. It's just a gold band. Just a "thing".

I cried because this "thing" represents the union between two best friends who love each other and have promised to do so forever. I cried because this was actually my second wedding ring. Early in our marriage, we were flat broke and had to sell our original rings to pay the rent. That's a whole other story! I cried because this "thing" was a symbol. A symbol of a beautiful marriage.

As the night went on, I cursed CIDP. It has changed my life and now it has taken my ring. I was just so stinkin' mad! Then as it got later, my finger started to look much better and I became much more rational. I realized I could be angry about this or I could choose to find hope it this situation.

My marriage is my marriage with or without a wedding ring. I have been blessed with an amazing man and an amazing marriage. I can't imagine life any other way. What a journey the two of us have been on! A ring is just a ring. I have the real thing, not just a symbol.

In time, we'll save up enough money for another simple band. Until then, I'm thinking about buying a ten dollar fake one. Whatcha think?

CIDP, you can take the ring, but you can't take the real thing!

With hope,
Kristen

How Many Of Me?

2008-09-26T19:10:00.005-05:00

As if I have extra time on my hands, I came across this today. As dorky as it is, I'm passing it along. Kinda interesting! Let me know what you think. Oh yeah, if you're one of the other Kristen Reyna's in the USA, let me know!

HowManyOfMe.com

There are
19
people with my name in the U.S.A.

How many have your name?

FDA and Gamunex

2008-09-23T17:01:00.003-05:00

For those of you with CIDP I'm sure you've heard the news!

It seems that the FDA has approved Gamunex for treatment of CIDP. This is the current IVIG I receive and have for some time now. From what I can figure out, Gamunex has been designated as an orphan drug to treat CIDP. Not sure what that means other than financial incentives for manufacturers.

This is obviously great news because I received the announcement from GBS-CIDP Foundation International as well as it being all over the internet for over a week now. Hopefully someone has the answers to my questions...

My questions are: What does this mean for those of us with CIDP? Does it mean the cost of Gamunex will likely go up or down?

Does it mean Gamunex will be harder or easier for me to get?

Does this mean Gamunex will be available to those without health insurance?

I'm thrilled because this is a step of progress and any step forward is a step in the right direction!

Exciting and hopeful days ahead!

With hope,
Kristen

It's Here! It's Here!

2008-09-16T10:12:00.003-05:00

It's a glorious time of year, isn't it? After all, the Pumpkin Spice Latte is back! That's right! Head on down to Starbucks and check out my favorite "comfort" drink. It's just a beautiful thing. Makes me want to turn off the AC and open the windows. Oh wait...it's still South Texas and we can't quite do that yet. But I can still pretend it's fall.

Enough of my Fall-weather-people envy for now! I'm hosting a small group in my home each week which kicks off tomorrow. Twelve sweet ladies will join me in a Becky Tirabassi study called "Let Prayer Change Your Life". Can't wait! Becky will be the guest speaker at the Living the Life Conference and I'm thrilled to get to meet her in person. If you haven't already purchased your ticket, this is an event you won't want to miss. Check out www.livingthelifecc.com for more info or email me.

I hate to admit I'm a little nervous about having 12 women in my home every week. I have friends over for coffee all the time, but I'm not the best housekeeper. Let's face it...with chronic illness you have to pick your battles and keeping a clean house is low on my list. I have clean floors and clean bathrooms. Anything else I need to worry about? We'll be doing the study in my living room, but I'm curious...What's the number one thing you notice when you walk into someone's home? Is it the dust on the furniture, dirty dishes in the sink or do you notice the smell of a great candle or clean mirrors? Help me make my priority list to prepare for my sweet friends. Thanks!

With hope,
Kristen

Field Trip

2008-09-05T08:50:00.002-05:00

In another attempt to organize my life *grin* I came across an old journal entry dated May 7, 2008. Sharing that with you probably tells you how unorganized I really am! Because this journal entry is a reflection of life with chronic illness, I'm posting it here.

May 7, 2008

Field trip today with DiMarco's class to Austin. We had a great time together. He's such a fun, sensitive, loving guy and I just love spending time with him. We started our day at 4 a.m. Makes me nauseous to get up this early. We chartered buses which was nice so we didn't have to drive. Needless to say the bus was filthy and disgusting, but all the parents rode on one bus making it much quieter than riding with noisy fourth graders!

Arrived in Austin. Went to Bob Bullock Museum for my first time. Great museum, but lots of stairs. I mean LOTS of stairs. I started out great, but cratered eventually. Sent DiMarco on with his group and just hung back...couldn't keep up. I was okay though because DiMarco wanted me just to "be" there.

Then off to the Cap. Building...beautiful detail and architecture. More stairs...no really, more stairs than you could possibly imagine. Lagging WAY behind now, getting a little teary-eyed and then DiMarco said, "Hey Mom...come over here and let's stop and take pictures." Did he read my mind? We stopped and took pictures and I don't remember what we started laughing about, but we laughed hysterically until tears were streaming down our cheeks! My exhaustion was a distant memory. Then more stairs, but I just kind of meandered around and went at my own (snail's) pace reminding myself this was all for my son.

We ate lunch on the beautifully manicured grounds outside State Cap. Bldg. Moms brought blankets and spread them on the grass, but I knew if I sat down I wouldn't be able to get back up. How embarrassing that would be. So I ate on a nearby park bench and watched DiMarco and his friends eat and play. All the other moms sat together and for a split second I wondered what they were thinking. Only for a split second. I knew they were probably thinking I was antisocial, but I realized I really didn't care what they thought. I was doing what I had to do to get through this trip and their opinion didn't matter one bit. Truth be told, they didn't have a clue what I was going through. Invisible illness is a blessing and a curse.

DiMarco had a wonderful trip and loved the fact that his Mom was there. I'm exhausted and this will take days to recover from, but I feel such a sense of accomplishment. I certainly don't enjoy this level of exhaustion, but I DO enjoy the fact that despite CIDP, I did it! I made it and was there for my son. As we loaded up for the long trip home, DiMarco went to his bus and I went to mine. Before he did, though he said, "Mom, this was a great day. I'm so glad you came with us." Ahh...music to a mom's ears! A beautiful melody to the ears of a mom with chronic illness.

Visit Me

2008-08-28T13:23:00.002-05:00

Grab a cup of coffee and visit me over at Rest Ministries today. I've been writing to support those with chronic illness/pain and thought I'd start providing a link each time. Enjoy!

http://chronicillnesssupport.typepad.com/dailydevotionals/2008/08/my-hiding-place.html

With hope,
Kristen

Treatment Day

2008-08-21T19:25:00.002-05:00

I was just sitting here thinking that I can honestly say my life is never DULL. I seem to go from one adventure to another and life never gets boring! Today was no exception. **sigh**

My IVIG infusion was scheduled for 9:00 a.m. and Randy was right on time as usual! She's such a doll! Everything went off without a hitch except I completely forgot my premeds. Oops! Not to worry, Randy reminded me. Then while putting the needle in, my vein rolled. That hasn't happened in about ten years! Luckily I didn't feel any pain because the numbness is pretty strong in my arms right now. Did I just say the words "lucky" and "numbness" in the same sentence? Anyway, Randy was a pro and got me hooked up without incident. Luka actually watched this time without saying "Gross!" In fact, she was very brave and patted me on the back through the whole process. She usually isn't interested at all, unlike Ellen when she was Luka's age who watched everything from start to finish and asked a million questions. DiMarco is seriously repulsed by the needle and usually stays occupied in another room. Today was a different story for him. He's been throwing up since early this morning and hasn't had a bite to eat all day. He drank a bit of Sprite, but even that didn't stay down. Bless his heart, now he's dry heaving.

Just think...all this in one day! If you're squeamish, my house is not the place to be right now. Poor Chris! When he gets home, I can promise you he'll run for the hills! Wimp!

Even with the yuck of today I am filled with refreshing hope! I hope you're having a wonderful day!
Kristen

Snaps For Me!

2008-08-13T23:14:00.003-05:00

Today I scheduled my next IVIG. Snaps for me! I didn't wait until the last minute this month. I took the hint when both the pharmacy and my home health nurse called and left me a reminder. Hmm...Ya think they know me pretty well? Anyway, my shipment should arrive on Friday and I'll have the infusion later next week. Hopefully the treatment will lessen my nerve and joint pain.

Today I felt a ridiculous amount of joint pain, especially in my wrists and ankles. I guess wearing heels is out of the question for a few days. Oh well, I guess it's flip flops for me!

I found out today I will be able to attend the GBS-CIDP Foundation International Symposium in November and I can't wait. I've never been to one of these before and I've heard they're very informative and encouraging. I can't wait to meet people I've come to know online. If you're planning to attend, would you email me at let me know you're going? I'd love to see you there.

Tonight I'm filled with refreshing hope,
Kristen

Fat Lip

2008-08-12T16:22:00.003-05:00

I'm desperately trying to get caught up on some writing while my younger two are getting louder and louder playing next to me. They're not doing anything wrong...it's me...trying to accomplish something when I should just be enjoying my kids.

Ten minutes later...

Funny I would post the above because right in the middle of my thought process on what to write, my youngest starts screaming and I turned around to see her mouth covered in blood. It seems she wanted what my son had and just thought she would TAKE it. She found out the hard way that doesn't work out too well. The toy slipped right out of my son's hands and hit her smack in the mouth, splitting her top lip.

So now she's on the couch with a wet rag on her already fat lip and my son is dancing in front of her trying to get her to laugh and forget about the pain. Time to go be a mommy...I wouldn't trade these days for anything!

What's going on around your home today? Fat lip anyone?

With HOPE,
Kristen

It's Been A While

2008-08-05T09:24:00.002-05:00

It's been awhile since I last posted...not sure why. Busy working on a couple of projects for one thing, but also I think I'm in that familiar "funk" of just getting by. I'm definitely not depressed or anything, just frustrated with CIDP. I'm sure you've been there. I'm sure we've all been in that place where we have to just put one foot in front of the other, not showing any emotion or the flood gates will open. Been there? Welcome to chronic illness! **smile**

Even in the "funk", I have HOPE. Tremendous HOPE! I'm sure this will pass and I'll be dealing with my body better in a few days. Like everyone else, I just get frustrated at not being able to do what I want my body to do. Grrr! Don't know what works for you, but what works for me is spending some alone time with God. I have some work to do this morning, but my afternoon belongs to Him!

Hope you have a great day filled with refreshing hope!
Kristen

Hurricane Dolly

2008-07-23T22:43:00.002-05:00

It seems we've dodged the bullet (Dolly) and are only getting a large amount of rain and high winds. Thankfully, we're all safe and sound.

It's an adventure living in this area of the country especially with CIDP. With any chronic illness, if you take medications, you have to make sure you have plenty of each prescription in case we have to evacuate. Luckily, I don't take meds, so I don't have to worry about this one. My mom does, though and we all know how picky insurance companies can be about the refill time. This can get expensive when planning to leave town in a hurry.

For those who are incapable of evacuating, they are encouraged to call 211 and register. Not sure if this is a state or federal registry, but I think it's great for people who can't manage on their own or who don't have family to care for them in an evacuation.

As for me, thankfully I had already received my shipment of Gamunex and was waiting to schedule my next infusion when news came about the hurricane. My nurse was able to squeeze in a treatment for me in the wee hours of the morning and I can't tell you how glad I am to have my infusion over with. I certainly wouldn't have wanted to travel with the side effects of IVIG, but I wouldn't have been able to wait any longer. I was so glad we could fit it in and I gathered my hurricane supplies for my family the day prior to my treatment. For those who don't live on the coast, we need things like flashlights, batteries, nonperishable food, water, first aid kit, etc. It's really not that bad, but planning for a family of five can get expensive. The kids think it's great because our pantry is stocked with snacks and we get to watch tv (weather) all day! My family is intrigued by storms, so this is exciting for my kids.

Anyway, the brunt of the storm went way south and tonight the kids got to play outside for about an hour. I'm not sure who was more excited about them playing outside, the kids or Mom? We're still expecting more rain and high winds, but tonight there was a lull in the outer rain bands of the storm so my kids were enjoying it. Hopefully we won't have any tornadoes and this will be over with soon. I think we're gotten past the worst of what we're going to get. It's a different story farther south.

Keep those in Port Isabel and the Brownsville area in your prayers.

Blessings,
Kristen

Changing Symptoms

2008-07-16T00:04:00.005-05:00

As I drove home from back to school shopping for my oldest, I tried to figure out why I was such a grump. I was tired and cranky, but more than that, I was worried and frustrated.

You see I've been making great effort to stay indoors in the middle of the day to avoid the South Texas heat. Today I was in such a hurry to get things done, I never gave it a second thought. That is, until my left hand and left leg were completely numb. Then I realized what I had done. I was driving around and walking in the scorching heat, knowing full well how it affects me.

Before I knew it, worry and frustration had taken over. How will this progress? What will happen next? Will this last long? How many days until my next treatment? Will I have the strength to get from the truck to the house? Will I be able to cook supper for my family? UGH!

Yes, I made it from the truck to the house. I grabbed a bottle of water and relaxed on the couch. Yes, I was able to make supper. Not an elaborate one, but it fed my family just the same. After a relaxing evening I was even able to take a walk to the end of the block and meet a new neighbor.

I wish I could say I was strong and confident when my symptoms progress, but I'm not. I worry and get frustrated with my body's inability to perform. Some of the feeling came back in my leg tonight, but not in my hand. (Not unusual for my left hand)

Tonight I'm resting in the certainty I have found in God. Nothing else in my life is certain. My body changes, life constantly changes, but God remains the same. My worry and frustration are futile. Thank you, Lord. Tonight I'm resting in your certainty, your faithfulness.

"I the Lord do not change..." Malachi 3:6

We're Home!

2008-07-13T22:48:00.004-05:00

We're home from vacation and now I need a vacation! We had a wonderful time together and created lifetime memories with our kids. It was just fabulous. It was also exhausting! I need about two days of solid sleep to recover, but that's never going to happen. So, we're back to life as usual.

Just before I left town, I received news that I will be a weekly devotional writer for Rest Ministries! I'm honored to write to encourage those with chronic illness and I'm thrilled with this opportunity. I would really appreciate your prayers about this great news.

For those of you who've emailed me, I'm working hard to answer everyone by Monday night. I'm overwhelmed by your questions, comments, and feedback. Thank you so much.

Many blessings,
Kristen

Vacation

2008-07-06T20:05:00.002-05:00

Hi Everyone!

I'm currently enjoying a much needed vacation with my husband and kids. Just wanted you to know I'll be back in just a few short days with some really exciting news! Talk to you in a few days. Until then...grab a chair and a cup of coffee and check out these fantastic blogs.

Many blessings,
Kristen

www.positivelyalene.blogspot.com
www.encouragementfrommyheart.blogspot.com

Momma Bird

2008-06-24T08:17:00.004-05:00

A mockingbird has decided the little tree right off our front porch is the perfect place for her nest. She worked for weeks preparing this intricate nest, sitting on her eggs and getting ready for her young ones. Now the eggs have hatched and she busies herself all day bringing food to them and caring for them.

As I looked out early this morning she was sitting in the nest with them and all was quiet. The minute Momma Bird flies off, the crying begins. Her little ones call and call for her until she returns. With every return, she brings them food and works to provide for them all day long. She diligently protects these helpless ones from predators.

As an expectant mom, I worked, prepared, and waited for my little ones to arrive. When they first came home seemingly all of my time was spent feeding, nurturing and caring for them. As they grew older, my time was spent molding their character, teaching them love, kindness, sharing, teaching them about Jesus. Now my role as a mom has changed yet again. Now I'm loving, guiding and nurturing from a bit of a distance. They're becoming more independent and needing my presence less and less. They still need me for sure, but my constant presence isn't necessary.

Just like the Momma Bird, this Momma has moved to more of a protection role. My job is to help my children make decisions about their future, about their friends, about their education, etc. that will serve them well later in life. My job is to protect them and help them make godly decisions on their own.

I must tell you this is the most difficult phase for me. When they were younger, mothering was more demanding. This is just plain difficult. It's difficult to watch them make choices I would rather they not have to make yet. It's difficult to see them make bad decisions, even though they seem so trivial at this point in their lives. Trying to raise godly, passionate, strong, loving children isn't easy especially when I'm less than godly, passionate, strong, and loving due to the exhaustion from CIDP.

Thankfully the Lord "gives strength to the weary and increases the power of the weak." Isaiah 40:29. In times like these, I'm holding fast to the remainder of Isaiah 40 which says, "Even youths grow tired and weary, and young men stumble and fall: but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

"Lord, thank you for blessing me with three beautiful children. Help me to raise them as I know they are not mine, but yours. Amen."

Do You Remember?

2008-06-10T10:44:00.000-05:00

Do you remember the day you first felt Jesus in your life? Did your heart race?

Do you remember the feeling when you first knew He was real?

Do you remember the day you finally said, "Okay, my life is yours?" Were there tears of joy?

Do you remember the day you said you wanted to belong to Him always? Did you feel as if heaven was close enough to reach out and touch it?

Do you remember the day you shared with others your decision to follow Jesus?

Do you remember the exact moment you were washed in the waters of baptism? Did you feel His love wash over you? Remember?

I remember as if it was yesterday. It was a day I'll never forget. It was actually after midnight during the summer. My husband and I were both baptized in a friend's swimming pool here in Corpus. The beginning of a new life, a new walk together with Jesus. Even in the middle of the night, friends and family shared in the event and it was amazing. I had watched these friends live out their faith in front of me for awhile. Jesus became real to me through them. (BTW, Who's watching you?)

My excitement and privilege to be a child of God is the same today as it was that day in the swimming pool. My passion for Him has grown and will burn within me until the day He comes again. My challenge for you today is to live out your passion for Christ daily. Let your faith in Christ be vibrant, outrageous, alive...live out loud!

Share your "moment" with me! What do you remember about the day you became His? I'd love to hear your story!

Blessings,
Kristen

When You Look At Me

2008-06-07T15:47:00.002-05:00

Please continue to leave your comments on keeping your marriage strong with chronic illness!

Today's post is meant to be honest and authentic, but in NO way is it a pity party. I wouldn't trade my life for anything. This is just something I wrote in my journal awhile back. Let me know what you think.

When You Look At Me

* You see my smile...What you don't see is a choice. I don't always feel like smiling but I'm choosing to live a life of joy despite this illness.

* You see a woman who is dressed and wearing makeup...What you don't see are the days when this just isn't possible for me because on those days, I hide from you.

* You see that my hair is "done"... What you don't see is that even on a good day, raising my arms over my head to dry my hair is nearly impossible.

* You see my expanding waistline...What you don't see is my search for healthy food I can actually eat without annoying migraines and nausea.

* You see a body without muscle tone...What you don't see is that if I exercise, I'll be unable to get through the day with my kids.

* You see someone who moves slowly and cautiously, perhaps even lazily...What you don't see is my lack of balance and my struggle to even pick up my feet when I walk.

* You see a woman who likes to wear flip flops...What you don't see is the pain and discomfort of wearing shoes on most days.

* You see someone too lazy to cook for her house guests...What you don't see is I'd rather spend time visiting with you than using all my strength just preparing you a meal. I love having you in my home and spending time with you.

* You see chubby fingers...What you don't see is painful joint inflammation.

* You see a round, puffy face with awkward features...What you don't see are the steroids that saved my life at one point or the fear of having to return to steroids one day.

* You see a casually dressed woman...What you don't see is my constant search for inexpensive clothes without buttons or snaps that are hard to grip or my search for natural fibers that don't burn my skin.

* You see my trembling hands and think I'm nervous...What you don't see is the demyelination occurring in my body that has nothing to do with being nervous.

* You see my busy lifestyle...What you don't see are the days I have to stay home in bed.

*You see a strong, self-confident woman...What you don't see is a weak woman made strong only through the power of Jesus Christ who is full of hope!

What do we see when we look at you? What do we not see?

Blessings, Kristen

Staggering Statistic

2008-05-26T21:28:00.001-05:00

75% of marriages in which at least one spouse is afflicted with chronic illness ends in divorce.

This statistic just rocks my little world! If you or your spouse live with an illness it's easy to see why the divorce rate is incredibly high. Chronic illness places additional struggles on any marriage, no matter how strong your faith.

On the other hand, what makes the other 25% stay together? What makes their marriage stronger? I'm so blessed to be married to a wonderful man who loves God, loves me, and loves our children. But I would be willing to bet a portion of the 75% marriages who ended in divorce said the same thing at one point. When chronic illness shows up it changes everything, but there are marriages out there who are made stronger by illness.

Here's where we can learn from each other, what keeps your marriage together? What keeps your marriage strong? Even with chronic illness as part of your marriage, what keeps you two strong?

I will share my thoughts later, but for now I would love to hear from you. Email me your thoughts or post a comment to this post. If you've never posted a comment, just click on "Comment" and you can leave your name or comment anonymously if you'd like. Share your thoughts on keeping a strong marriage in the midst of chronic illness. Thanks for sharing!

Blessings for a strong marriage,
Kristen

IVIG day and ALS

2008-05-21T23:12:00.002-05:00

Today was treatment day! Glad to get it over with, but I'm not looking forward to the next few days. My hands and feet are swollen and my head is pounding. Thankfully, I've only gotten sick once today! I can't complain and once again I'm thankful for IVIG.

Please pray for my friend who was recently diagnosed with ALS. He is a godly man with a beautiful family and my heart breaks for them. Thanks for your prayers on his behalf.

Be encouraged today. Even in the midst of illness and heartbreak, God is there. Hope is found.

Blessings,
Kristen

"How Are You?" continued

2008-05-17T05:16:00.004-05:00

I'm sharing a short thought written by my new friend, Doris Farley. You can read her bio at the end to find out more about this gifted writer! Her words continue with our "How are you?" thought and she says it so beautifully. Share your thoughts!

Blessings for you today,
Kristen

"Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone." (Colossians 4:6) (NIV).

"How are you?" is a question I often dread. Some people truly want to know, and can relate to what we're feeling. But there are so many well intentioned "others"- those who care, but may not really want to or need to hear our painful answer. I'm finally beginning to ask myself, "Do they really want to know?" before I respond. What will happen, I wonder, if I respond, "I'm
having quite a painful day and I'm terribly emotional?" Will I receive well-meaning advice? Will they stumble over their sympathies, or will there be that long, pregnant pause, because they just won't know what to say?

Colossians 4:6 tells us that our speech should always be "full of grace." Another Bible version I use reads "pleasant, gracious and winsome."

I wonder what can I possibly say that is pleasant when I'm truly feeling rotten? What words can I offer that are seasoned like salt, flavorful enough that one would want to feast on them, or relish them like a favorite dessert? Our words have an impact on others, so perhaps we need to think of our response as an opportunity. Can we, despite how we're feeling, bless, encourage, love, and make them feel warm inside? Perhaps, we can express thanks and indicate how much their caring means. Or perhaps we can share our love for Jesus and the strength He gives us as He helps us persevere each day. Yes, our physical feelings would then remain unsaid, or be said less frequently. But thankfully we know that we can bear all to our Lord and Savior and He will listen, and truly understand, care and comfort us, better than any other human ever could!
Beloved, we have an opportunity at hand! Boy, I know I've got some changes to make in this area! With the Holy Spirit's guidance, we can serve the best tasting words to others.

Prayer: "Dear Lord, when we're feeling burdened by pain and illness, we know You understand. Help us then to know how to speak to others, to build them up and share Your love, despite how we're feeling."
_________________________________________________________

Doris Farley experiences chronic pain that began after an accident. Her circumstances have led to an unexpected, life-changing spiritual journey that has renewed her commitment to our Lord. She thanks God for reaching her and prays that He will reach you also, through the words He gives her to write for you. You may write to her at dorisfarley@aol.com

Tagged by Storm

2008-05-06T23:28:00.008-05:00

I've been tagged by Storm and I'm not feeling too confident about my answers, but here goes!

Questions:

1. What were you doing 10 years ago?
Wow! Ten years ago, my son DiMarco was five months old and I was physically struggling to care for him. It was a joyous moment in my life because I just had a sweet, healthy baby boy. But it was one of the darkest times in my life health wise.

2. What are 5 things on your "To Do" list?
Pay bills.
Study the book of Job.
Field trip on Thursday.
Finish this meme.
Find a quality videographer.

3. What are 5 snacks you enjoy?
Oh, good grief!
Marble Slab Cheesecake Ice Cream
Strawberry Squeezer from Keva Juice
Heath bar (especially as a mix in with cheesecake ice cream!)
Nutter Butters
Chips and Queso

4. Name some things you would do if you were a millionaire.
Buy a house and car for my mom and cover her needs, pay off our house and truck (and bills), buy a house with a big backyard for my kids, pay for college for all 3 kids, my husband would be able to start his own business, pay for retirement, save, invest, vacation with my husband and kids, and care for family.

5. Name some places where you have lived.
Michigan, California, Minnesota, Texas.

6. Name some bad habits you have.
To name a few...being critical of others, yelling, overeating, procrastinating, and on and on...

7. Name some jobs you have had.
Let's see...ice cream scooper, cake decorator, professor's assistant, secretary, teacher, preschool director, caseworker for attorney, director of ministry development, volunteer coordinator, outreach minister and I'm sure I missed a few.

8. Name those whom you are tagging.
I'm not sure yet.

4 Questions for God by my 10 year old

2008-05-05T20:50:00.002-05:00

In church yesterday, my son (10 yrs. old) passed me a note that said Four Questions I'd Like To Ask God. Here they are:

1. How tall are you?
2. How do I KNOW you're real?
3. Have you ever been hurt?
4. Have you ever done anything wrong?

No need for more words. I'm just enjoying this sweet moment. That's it for tonight.
Blessings!

Prayers for my Man

2008-05-03T11:02:00.004-05:00

Joyful Sister over at Encouragement from My Heart is hosting 31 Days of Prayer For Your Husband. I'm definitely in on this one and thought you might enjoy it as well. She also has a contest going, so check it out! You'll be glad you did.

Daily Questions

2008-05-01T15:13:00.004-05:00

Daily Questions of a Woman With Chronic Illness:

1. Did I get enough sleep to make it through the day?
2. Is the water too hot in my shower? Will it increase my weakness?
3. What should I eat this morning? Will that give me enough energy?
4. Should I push myself harder this morning?
5. If I do, can I make it through until bedtime?
6. What should I eat for lunch? Will that be good for me?
7. Have I had enough water?
8. Did I take my vitamins?
9. Did I order my treatment?
10. Did I call the home health nurse?
11. Did I check the calendar to set a treatment date this month?
12. Am I throwing a pity party today or encouraging those around me?
13. Has anything changed/progressed/improved this month?
14. Why?
15. Will I EVER find comfortable socks?
16. Have I scheduled routine tests with the neurologist?
17. How much will that cost?
18. Will I be a burden my family someday?
19. Will I be strong enough tomorrow to care for my family?
20. Will my condition deteriorate or will it improve?
21. Why?

The questions never end. The grace that covers all never ends.
Wrap me in your grace today, God.

I've Been Tagged by Linz!

2008-04-29T08:16:00.006-05:00

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,
Kristen

Choose Joy

2008-04-28T11:08:00.005-05:00

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?

Joyfully,
Kristen

Survival and Support

2008-04-25T17:21:00.004-05:00

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.

I've Been Tagged

2008-04-24T21:44:00.002-05:00

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
4. Real
5. Creative
6. Survivor

I'm tagging the following:

dawagners

sunjane

mjane

Final Post for Treatment Day

2008-04-18T22:06:00.002-05:00

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

2008-04-18T17:06:00.002-05:00

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

Racing heartbeat
Dizziness
Nausea
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

2008-04-18T12:58:00.004-05:00

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

2008-04-18T08:23:00.002-05:00

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!

Tomorrow

2008-04-17T18:59:00.003-05:00

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!

Much Better

2008-04-15T21:29:00.002-05:00

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.

A Not So Good Day

2008-04-14T18:03:00.002-05:00

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!

Traveling and Laughter

2008-04-13T19:11:00.003-05:00

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!
Kristen

We're All In This Together

2008-04-07T21:09:00.003-05:00

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.

Acreedo Calling...

2008-04-01T22:49:00.002-05:00

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.

Fingertips

2008-03-29T20:55:00.002-05:00

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.

It's Been Awhile

2008-03-26T13:24:00.002-05:00

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 remember....rest!

Friday's Infusion

2008-03-17T21:24:00.004-05:00

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 time...it 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!

2008-03-13T21:42:00.003-05:00

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...so blessed! Not sure, but I'm thinking Jason's for lunch...um 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.

IVIG

2008-03-12T23:17:00.003-05:00

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?

The Sock Search Continues

2008-03-11T17:46:00.004-05:00

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...

It's A Party!!

2008-03-07T20:25:00.002-06:00

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!

A Comfortable Day

2008-03-05T21:58:00.003-06:00

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.

Vitamins and CIDP

2008-03-04T20:58:00.002-06:00

Education...knowledge...power...

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 www.gbs-cidp.org

Your Comments

2008-03-03T21:49:00.002-06:00

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!

Feet

2008-02-27T16:52:00.003-06:00

Feet...

God must have a sense of humor. Why else would He have made such strange things on the end of our legs?

I'm not fond of feet. In fact, they kind of gross me out. My husband refers to my toes as "sausages". I admit, he's right. I have incredibly chubby feet...Incredibly chubby. As a woman, my feet are probably the only body part I don't really mind being chubby. My toes also go in order from tallest to shortest and this is one thing I actually like about my body. Hee hee...

Today, my feet are aching so bad I could just scream! They're throbbing just under the balls of my feet through the top just below my big toes. One of the perks of CIDP, I guess.

I had a pedicure just last week and it felt wonderful. If you have CIDP or any type of neuropathy, please consider indulging yourself a little and having regular pedicures. I resisted doing this until a few months ago because I hated the idea of spending the money and of someone else touching my feet! My feet are much healthier now and it's amazing how good a pedicure makes me feel. Finding someone who can do a pedicure the right way is the hard part.

Aching feet somehow keeps me grounded. The pain makes me stop and realize the strength I have isn't my own. "Be still and know that I am God." (Psalm 46:10) Maybe I wouldn't "be still" if I didn't live with pain. I can't live with CIDP on my own. I can't even get through one day on my own. My strength comes from you, God. I am nothing on my own...just a woman with chubby feet!

CIDP and the heat

2008-02-26T19:32:00.003-06:00

Yesterday was such a beautiful day! The sun was shining and not a cloud in the sky. To be honest with you though, I didn't enjoy one bit of it yesterday. Sunday, I enjoyed the sunshine and spent the afternoon at the beach. It was beautiful, cool, and clear. Yesterday, the sunshine was a reminder of just how difficult summer can be for those of us with CIDP. Any excessive heat and my hands and feet go numb. I mean, completely numb and it feels horrible. I just don't deal with this very well at all. For some strange reason, it makes me mad. No, it makes me furious! I don't want to waste even one minute of my life being mad, so I'm open to any suggestions as to how to make the summer heat more bearable this year. Have any?

I think I could handle it better if I gradually went numb and not instantly. If I'm in the car and get hot, it's miserable. If I'm walking from the car to a store and get hot, I'm miserable. Even yesterday, just going from the car (in the garage) to the back door of the house in the heat...I was miserable. I will NOT be miserable because of the weather this year! Please send me your suggestions for staying cool. I'm sure things are the same for CIDP patients in extreme cold, right? I'm looking for suggestions I can use in the car, running errands, going to and from work, etc. I usually stay plenty cool when I'm home because we keep the air turned down so I stay comfortable. There's a ceiling fan in every room of my house and a fan that I point on myself while doing my hair and makeup in the bathroom. I'd love to hear your thoughts. Sorry if I sound like a whiner, but this is real life with CIDP. It can be so frustrating!

I'm very thankful for a cold front that came in this morning. At least I'll stay cool this week! Thank you, God for the crisp, cool air even if only for today.

Great News

2008-02-20T20:18:00.003-06:00

I received great news yesterday!

First of all, when I arrived at Dr. B's, the office told me Dr. B was no longer in network, which means the coverage isn't as high. Not a huge deal, but testing like the Nerve Conduction Study can be expensive out of network. By this point, there were was no way I was leaving. So, I just told her that I was prepared to pay 100.00 and I asked her to go ask the doctor what exactly I should do now. As I thought he might, he said "Take the 100.00 and get her back here! She'll never come back if you don't!" Maybe he knows me pretty well, huh?

Now for my news...The Nerve Conduction Study showed no dramatic worsening since my testing over a year ago! Thank you, God! The changes weren't enough for concern and we agreed to continue my treatment as we are now. As for the swelling...not sure yet. My cholesterol was 219 which should be below 200. That was frustrating, but not devastating. My dad had high cholesterol and my lifestyle hasn't been the healthiest. So, not much of a surprise here. Dr. B was quick to say, "The medicine I think you should try is...", which was quickly followed by me saying "No way!" I absolutely will NOT take medicine until attempting to get this under control with diet and exercise. I'm not a fan of any type of prescription medication unless I HAVE to. Have you guys struggled with this or do you have any suggestions for me? (I'm sure all the eggs I ate for breakfast didn't help any...ha!)

Nerve Conduction Study

2008-02-18T22:47:00.002-06:00

Unfortunately I'm having a Nerve Conduction Study in the morning and I'm not looking forward to it. I guess you could say me and electric shock just don't mix. (Google "nerve conduction study" for explanation) Thanks to "Anonymous" for the accountability! Hopefully Dr. B won't decide to do an EMG this time because it's even more painful. I plan to go back to work after I'm done. Let's hope I don't get put in a room and forgotten about this time! I'll post my results tomorrow.

I sure hope the new socks I ordered arrive soon. I'm anxious to find something comfortable before it starts getting so hot here. Uncomfortable socks in the summertime heat is more than I can bear.

I haven't been successful with making breakfast the last few days. Just don't seem to make the time for it. To be honest, I haven't noticed a drop in my energy level either. I guess the eggs weren't doing much for me. What to try next?

Today was the day

2008-02-15T16:06:00.002-06:00

Even though I didn't want to, I HAD to have a treatment today. Once every thirty days, I receive IVIG for about 4-6 hours. I put it off long enough and for what reason, I'm not sure. Anyway, my day started with taking the two younger kids to school, dropping off a cd for our upcoming Women's Conference, and then back home. I threw in a load of laundry, tidied up the kitchen and the nurse arrived...my sweet Randi!

I followed protocol (surprise!) and drank plenty of water beforehand to help with side effects. Poor Randi couldn't get the needle in! Bless her heart, she tried twice before her supervisor took over and got it on the first try. Her supervisor was there to do my yearly paperwork and made her nervous, I think. It only hurt for a second, but my arms look like I've been in a whale of a fight! Randi felt just awful about it because she usually gets a vein on the first stick. She's great.

The rest of the treatment went without a hitch...other than having to drag the stupid pole with me every ten minutes to the bathroom! Supposedly, if I don't drink lots of water prior to the infusion, the side effects are worse. I'm not sure which is worse, the side effects or the constant trips to the bathroom!

I was done in plenty of time to relax for a little while before going to pick up the kids. I have to admit, I drove to Starbucks in my pajamas and barefooted for a frappucino. Such a dork!

BTW, Randi and her supervisor both noticed the swelling in my hands this time and wrote it in their chart. Yikes! I have a follow up appointment with Dr. B on Tuesday, so maybe they'll be a simple explanation for this. I also have to have a nerve conduction study on Tuesday. Hate those! It's nice to be able to chart the NCS results from my initial diagnosis to the present, though. It wouldn't take much for me not to show up, so if you wouldn't mind holding me accountable...that'd be great.

Hopefully, the side effects will be minimal this month. At times I've had migraines, vomiting, hair loss, joint pain, and felt like I was hit by a truck. So far, no headache today...just nausea and dizziness. I can deal with that. I have a conference meeting tonight that I've really been looking forward to and I refuse to miss it. These meetings aren't "work" to me, they're a blast! Hopefully, I'll at least feel like putting on a little makeup before then!

Cream of the Crop

2008-02-12T19:58:00.000-06:00

I'm so thankful for my nurse, Randi. She reminds me when I'm overdue for a treatment and does it with such kindness. She called me today to give me a gentle nudge, reminding me to call and schedule my next treatment. Thanks Randi, for being so genuine in your concern for my well being. I appreciate your kindness.

I went through many, many nurses to find Randi. The home health agency I'm with is fantastic, but sometimes it just boils down to personality and style. I had one nurse who refused to wear gloves, one who left his trash in my living room, one who was too overweight for my furniture, one who slept through my treatment, and others who were just plain rude. Randi is the cream of the crop. Love you girl!

Just to Clarify

2008-02-11T20:21:00.000-06:00

I received an email today asking me if I was okay and if I thought I was getting worse. I soooooo appreciate the concern, but I am NOT doing any worse than I have in the past. This is certainly an up and down disease. I'm just being honest with all of you and with myself. Denial is not healthy. I'm unable to help others until I've helped myself. I NEED to be able to write down the truth about CIDP and then let it go...the same way I always have. The only difference now is that I have the desire to share my life with this disease in order to help someone else. Who knows if there's someone out there reading this suffering silently? You just never know and I don't want anyone to feel alone in their suffering.

I don't want to worry anyone or cause any undue alarm by the things I write here. If things are worse than they've ever been, I'll share that with you. Trust me, I NEED you guys. I'm just trying to be honest. Again, I can't tell you how much your love and concern means to me. Have a good night!

Britney Spears

2008-02-07T22:10:00.000-06:00

I've been incredibly saddened by the life of Britney Spears lately. (Crazy thing to post about, I know.) I just feel so sorry for her. Her life seems so out of control and she seems so helpless. I guess no matter how much money we have or don't have, no matter how successful or unsuccessful we are in life, deep down we're all alike. We all have our own secrets and our own struggles. Britney's struggles look different than mine, but we both have them. You have your own secrets and your own struggles. My life with CIDP is no more challenging than the secrets and struggles you battle with or the struggles Britney battles with. They just look different. I'm reminded that God knows every single hair on my head (Matthew 10:30). If He knows the number of hairs on my head, surely He knows how my joints ache and I that can't feel my feet today. Surely He knows the torment in Britney's confused mind. Surely he knows the secrets and the struggles in your life. I'm comforted by His knowledge of every aspect of my life. If He cares about the number of hairs on my head, surely He cares about the rest of me! I pray you're experiencing the same comfort I feel tonight.

I Did It

2008-02-05T21:19:00.000-06:00

Thanks to a couple of great friends, I did it! I fasted last night and had my blood work done this morning. Thanks to Alene and Araceli for holding me to this. I got the kids squared away this morning, got ready for work, and headed straight to the lab. There wasn't another soul in the waiting room, so I signed in and they called me back immediately. It was absolutely seamless. It couldn't possibly have gone any smoother. Yeah Quest Labs! I'm calling Dr. B in the morning to make an appointment next week for follow up for my labs and to schedule my Nerve Conduction Study. Waah!

As I walked back to my car from the lab, a lady using a cane was walking slowly across the parking lot. She was maybe ten years older than me, wrapped in a shawl and was obviously struggling with the strong wind. She was carrying a book and her purse and she dropped her pen when I was about 6 or 8 steps away from her. I told her to hang on and I'd get it for her, which was funny to me in a strange sort of way. As I picked up her pen and handed it to her, she looked at me with great big tears in her eyes and said, "Thank you so much." I told her it was not a problem at all and continued on my way. I smiled to myself thinking that to anyone else, I would've been moving much too slowly and they would've picked up their own pen. To this lady, though, I was more than capable. I was sad for her because she looked so distraught and it occurred to me that my life is so blessed. I can walk to my car, pick up a pen for a stranger in the parking lot, go to work, and do so much more than the sweet lady I met today.

Are you able to walk? Then get out and WALK in the beauty that surrounds you! Can you lift weights? Then go to the gym and LIFT until you're a sweaty mess! Can you stretch? Then STRETCH and feel the burn! We're all at different levels of physical health. Make the best of the level you're at and challenge yourself to rise to the next level.