Hope Notes from Krista and Mike

Happy 3rd Birthday to Me! A Transplant Recovery 3-Year Review

noreply@blogger.com (Krista or Mike) — Sun, 29 Jan 2012 07:57:00 +0000

It's been three years since I received the life-giving stem cells from an umbilical cord of an Australian boy who would now be 13 years old, same age as my oldest son, and yet they'll never know this incredible story! The three years since the transplant have gone by so fast...oh yeah, I can say that NOW, but of course you remember how I moaned that first year! How slow learning to walk again felt at the time, but the progress was leaps and bounds looking at it from outside!

We celebrated last night at Hollister Brewing Company in Goleta. Just mentioned to the waitress, Kelly C., that it was a special night when I asked her to mark the occasion with a photo of our family (without Adam who is at Jr. High Winter Camp at Hume Lake this weekend). She surprised me much later in the evening when we ordered an old favorite dessert of mine which I haven't ordered in years, splurging since I felt a little deserving of it after all I've been through, and she came out with it like this with a candle and told me that it was on the house, courtesy of Hollister Brewing Co.! That was our first time there and after the great service, the waitress making me cry and the super duper hamburger and creative beer on tap. What, you ask, is creative beer? Well, let me share! I had a 10-oz Admiral Browning - listen to this description: "finished with Verve coffee from our friends at The French Press and Ecuadorian cocoa nibs...chocolatey notes and rich, fruity, jam-like overtones..." yeah, it was creative and exactly as described! Ok, got sidetracked in remembering our great evening. Now back to the real post...

Since the Santa Barbara International Film Festival is in town this week, and I've always longed to go, but never have, I thought I'd share the following 3-year-mark update in "awardesque" language. Hope you enjoy it! Be sure to comment and say hello at the end of this post to let me know you still read these things and do you like Hollister Brewing Company as much as I do after my first visit?!

Mike, me (with bronchitis!) and T-Man (A-Man was on a jr. high retreat at Hume Lake)

First Year Post-Transplant - 2009 - Winner of "Most Difficult Year" in the Physical Category

First day home after 3 months! The boys were 10 and 7!

Having lost so much of myself through the process--my hair, voice, tastes, nerve sensations, skin elascticity and moisture, my glands (including, but not limited to saliva, pituitary, and adrenals), some liver and kidney function, and my muscle which inhibited my ability to talk, walk, run or jump. Most of my functions and hair and even glands and abilities have returned. I am still weak in muscle because so much of it was lost and the recovery has been very difficult to return to exercise having lost that muscle, plus gaining weight from the meds and lack of normalcy has meant a loss of just my old self. My kidney and liver haven't returned 100%, but they are at good levels with no major long term damage. I still can't run or jump, but I seem to be always improving a little bit more each year. To know that I was practically paralyzed when I left UCLA in March of 2009 and now anyone who doesn't know wouldn't know unless I told them is amazing to me and nothing short of a miracle. I have had to re-learn so much and accept a new normal and I keep learning and accepting all the time.

Second Year Post-Transplant - 2010 - Winner of "Most Difficult Year" in the Emotional Category

"I look good from the outside when people see me..."

This year marked more grieving as the long-term aspect of recovery became a reality. I realized there was going to be a chronic nature to my suffering that I wasn't quite ready to accept. I still believed I could run again...like soon. If only I could try harder. I now had to keep grieving the losses and embrace the new normal like never before. Even more difficult as support of friends and family dropped off, which is understandable as people get on with their lives and see that I too am getting on with mine. I look good from the outside when people see me because I only venture out when feeling good. When not seen though, there's usually a reason and it's a quiet suffering one goes through. Asking for help at this point is next to impossible since it's not so obvious why I would need help being over a year since the transplant. I grieve my body, my abilities, my old dreams, loss of friendships or what felt like closeness of friends, and even the spiritual intimacy I had with God as I clung to Him during that year of crisis, but let go a little when things improved some and death was not imminent (or apparent because we never know when we'll be called Home). However, with great difficulty comes great reward and I've seen God bless me so much with new dreams, new purpose, a new body (not my favorite version, but I'm alive), new opportunities, and even some new acquaintances and friendships to add to my old ones which are not forgotten thanks to Facebook!

Year Three - 2011 - Winner of "The Most Difficult Year" in Mixed Bag Category

Acupuncture at NIH in Bethesda

The first half of 2011 was immensely challenging with my health being very poor and living with the constant mystery of it all. I didnt' realize then that much of my fatigue, pain and stomach problems were related to adrenal insufficiency. That adrenal problem was still landing me at the ER once a month when it turned adrenal crisis, yet I still didn't know it was adrenals! They fixed me up with fluids, anti-nausea, anti-pain, and steroids shots and I was as good as new to leave a few hours later. I called the ER my pit crew, nothing to fear. I suffered greatly with the stomach issues though and wanted to get to the bottom of it. So in May I went to the National Health Institute (NIH) to join a study on Graft-vs-Host Disease (GVHD) to find out what symptoms were from GVHD and what weren't! Come to find out much of my problem was medicine-related and I only had GVHD limited to my skin organ and my mouth. At that point I still didn't know what caused my stomach issues. By the time NIH was done with me, they'd reasoned that they did as much to me as one can take with tests 8 hours a day 5 days in a row. I was cut, poked, photographed n*u*d*e (I never mentioned that!), cut some more, poked again, and again and again, MRI'd, hooked up to machine after machine, and yet, they never got to my stomach! So as soon as I returned to Santa Barbara I saw a GI doctor who looked at me inside from both directions and concluded it was NOT GVHD of the stomach. Finally. I had ruled out everything except Adrenal Insufficiency and that was it. Immediately off Predinisone which was a real source of problems too from moon face to breaking both ankles and now taking a little bit of Hydrocortisone...I felt like a new person! That was June.

The second half of 2011 was markedly better with more energy and determination than ever. This relief made way for new dreams which include:

full restoration of my health (not there yet!)
to get off all meds
to lose the post-transplant weight (I've lost 15 pounds in 12 weeks and continue to go)
to begin exercising more (have since Xmas, but taken a break to recover from a tough case of bronchitis)
continue my ministry of hope and encouragement (I shared my testimony at Believing Woman and have been asked to speak for about a half hour at a MOPS--Mothers of Preschoolers--meeting in April!)
put together a book of this journey, maybe an inspirational devotional for those who suffer - if you have ever published a book and can mentor me as a ministry opportunity, contact me!
have more adventures with the boys
help others find joy in their home school experience through my consulting services, my blog and future ebooks (Since the transplant, I was certified as a LearningSuccess™ coach in order to transform the lives of children and young adults with the principles that have helped me so much!)
simplify - get rid of excess and create more room and time for others
oh, and incidentally, go to SB Film Festival...maybe this is my year! Just threw this one in for fun since technically it is something I've always wanted to do and it ties into my 'theme' well.

Thanksgiving Day 2011 -- Praise God! We are so thankful!!!

Feeling so much better from July through December allowed me to take on many more activities and adventures and found myself getting more infections as a result. As I write this I still have bronchitis and have been pretty sick all week...sick since Dec. 25 actually which is over a month ago! I have to continue to keep learning how to balance the new me and the remnants of the transition me that is still immune-suppressed. I have to remind myself not to get complacent about hand-washing (I stopped asking people to wash their hands when they come over, but I'm re-instituting that policy!) I have to keep learning how to balance the no-energy me with the energetic me and the desire to live a calm and relaxed life with my desire for adventure, social activity and service to others in ministry and in business ! I know there is a better balance. Seeking the Lord first will only help me to find tune my compass and live with God alone as my True North. I like how God says it in Isaiah 48:17 --

I am the LORD your God,
who teaches you what is best for you,
who directs you in the way you should go.

Say hello and let me know if you still read my posts...and do you like Hollister Brewing Company?...and do you want to help me publish my journey into a devotional or other book?!! Please engage in the comments section - I'd LOVE to hear from you!

UPDATED to add this video...visit www.bethematch.org to find out more on how to donate your baby's cord blood if you are pregnant or will be. The same website is your source for information for becoming an adult stem-cell (bone marrow) donor for someone waiting for a life-saving match! Here's the video, "Give Birth to Hope" that explains the importance and miracle of cord-blood donation all so well:

Long Overdue Update: Believing God More!

noreply@blogger.com (Krista or Mike) — Wed, 02 Nov 2011 18:17:00 +0000

I have been so super busy that I haven't had a moment to update the blog in a couple months! Quick update on Maria, the Russian orphan with down syndrome that our friends the Zuzunagas are adopting and which I posted about earlier when we were helping to raise funds for the adoption. Well, they are embarking this week to return to Russia and bring her home! Her adoption went through last week before a judge and everything went smoothly thanks to the prayers of many.

I continue to be healed. At one point I had given up hope that I could ever be 100% whole again with the strength and abilities I once had. Since then, I started attending a new ministry which was launched recently by Naomi Van Wyk called Believing Women. It's a wonderful gathering of beautiful women, inside and out, who love the Lord and each week we worship Jesus and are given a great message of encouragement to encounter the Living God and awaken to our true calling, purpose and destiny.

You can find them on Facebook and at believingwomen.com We meet twice a month, and despite my busy schedule, it's the one thing I make extreme effort to attend because who wouldn't want to encounter the Living God and be filled in a deep and meaningful way? The Holy Spirit is definitely present and going there affects me as I learn to BELIEVE God more and more and see Him do big things in my life following that belief. Wow.

So, I started attending that and decided I had faith in God, but I had lost my belief in the fact that He does want to heal me. Whether it is immediate, over time or once in Heaven, He WILL heal me and it is way more possible for him to do so when I am believing than when I'm not. Believing him prepares me to receive it. So that's what I did. I asked Him specifically for strength and healing. I believe it. That week I was completely motivated to begin the journey I need to take for weightloss. A scary venture since the whole reason I had gained so much weight in the past 2 years was due to comfort. I had been in so much pain and suffering that food was the only physical pleasure that relieved it, even for 10 minutes. I became addicted and now I'm at the point where I'm totally unsatisfied with the results of that addiction. I had believed the lie that it didn't matter, that it feels good and that ignorance is bliss. Well, time to go back to what worked for me before which was the Prism Weighloss Program, a Christian-oriented program of transformation of beliefs in order to restore you to the true you. There was no group meeting in my town so I created one and put the word out. I believed I would have 5 members and thanked the Lord for it before I saw that reality. Faith is believing in what we can't see, right? Well, God came through and moved 5 people to join within a week. We have been meeting for just over 2 weeks now and it's going well. It's a 6-week phase so I'll update you at the beginning of Phase 2.

The other way I saw God moving in my healing was when I started feeling motivated to take stairs and park further away instead of relying on my handicap placard all the time. It felt great to be able to do 3 flights stairs, twice and quickly, as I had been fearful that I couldn't do one. Past experiences do not dictate what we can do today. We have to put the past behind us and stop listening to the lies.

I also started exercising again on a fitness trampoline. I was enjoying it very much and on Saturday, tried to do it quickly in between activities and landed wrong, injuring my knee enough that I have had to take a break. Once it's healed I'll be back to my regular exercise routine. It was a lot of fun!

That's all for now...Be blessed today knowing how much Jesus LOVES you and if you are at the end of your rope and have lost hope, perhaps God has allowed this circumstance to give you the opportunity to turn to Him, now that you realize you can't do it on your own any more.
1 Peter 5:5b-7
“God opposes the proud
but shows favor to the humble.”
Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Video Update: Both Hands Project

noreply@blogger.com (Krista or Mike) — Fri, 02 Sep 2011 18:53:00 +0000

Last Saturday, our family worked with a team of 15 to undo 20 years of dust, grime and broken things in and around the mobile home of Louise, a 90-year-old former missionary who has no family. It was a blessing to be a part of something bigger than ourselves and to know that this could help the Zuzunaga family bring home Maria, a Russian orphan with down syndrome home sooner than later.

From Gentry Zuzunaga:
It really was a great experience as we were able to share God's love for this really needy woman. I am so amazed at all that God has done during our adoption process, including the Both Hands project. Because we chose to answer God's call to adopt, He has also given us the opportunity to minister to other people, including Louise, who we might otherwise, not have met. We serve a really BIG God and I'm so glad He can see the BIG picture because mine is definitely too narrow.

Please watch the video of our project and prayerfully consider a donation to the cause of bringing Maria home to her forever family. Funds are coming in so slowly for this family and the longer we wait, the older Maria gets. She is 4 years old right now. By 5 years old, the orphanages send these wonderful children into institutions for the mentally ill. It's not a pretty picture, but you can make a difference in the life of Maria today. The donation information is at the end of the video. James 1:27 Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.

Big Update! Light at the End of the Tunnel!

noreply@blogger.com (Krista or Mike) — Tue, 16 Aug 2011 01:47:00 +0000

I do realize that I never updated you after the NIH trip to Bethesda, MD. It was such a rough recovery after coming home that I was just too sick to do so. As it turns out my adrenals were shot and I had nothing to withstand the stress of travel. So daily I laid on the couch moaning in stomach pain, and fighting nausea, many times vomiting and diarrhea. After 2 months of this, I ended up in the ER and explained that I thought it was an adrenal crisis and to give me a hydro-cortisone shot which indeed helped stop the situation. This after having had my stomach and colon scoped just to make sure this had not been a GVHD attack. It wasn't.

Photo of me getting acupuncture at NIH in Bethesda. First time :) Since coming home I've had a very good acupuncturist work on me. It's actually quite relaxing after the initial pokes! A TIME magazine feature on chronic pain noted that the only effective alternative therapies for chronic pain were physical therapy, massage, acupuncture and yoga, and biofeedback, as well as two Chinese herbs that were found to be more effective than a rheumatoid arthritis medication. The names of the herbs elude me at the moment, but you can find more info at the link to the article.

So despite the hardship that was going to NIH, the resulting information and clarity was helpful in that they showed me what was and what wasn't GVHD in the body. I have GVHD but limited to my skin and oral mucosa. That is great news! All the other stuff I've dealt with over the last 2 and a half years has been due to medication side effects and adrenal insufficiency. Not so great, but something we can work with and hopefully overcome.

So ever since my birthday, I have felt like my old self which is really saying something since I just turned 40. My energy is so much better and after some regular acupuncture and massage I have been regaining my muscle activity and sensations in my feet. I started walking and am utilizing my former walk-to-run program which I invited everyone who wants to join me (we're just starting Week 3 now, but you can join anytime and start at Week 1)...I made a Facebook Page which has the schedule for the program and other tips and encouragements along the way: Join my Walk-to-Run in 18 weeks group on Facebook

The other great news is now that I'm feeling better, we're able to serve the Lord in new ways that I didn't think possible just a couple months ago. Friends of ours from church, named Gentry and Luis Zuzunaga, are adopting a 3-year-old girl from Russia who has down syndrome. They've fallen for this sweet, adorable child named Maria, and feel God is calling them to bring her home. Since we cannot adopt at this time ourselves, we would love to do everything we can do live out the verse in James that says, "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

What better way to do that then to help out a 90-year-old woman with her home repair needs while raising money toward the $20,000 needed to bring Maria home. Mike, Adam, Trevor and I plan to do just that. We're teaming with the Zuzunaga Family and a ministry called Both Hands (one for the widow and one for the orphan). Please consider sponsoring the English Family in our project to help Louise, a local 90-year-old woman who served the Lord many years as a missionary and who has many home repair needs to be attended to by our team. The money raised will go to bring Maria home to the Zuzunaga Family. To learn more about this project, about Louise, Maria and the Zuzunagas, as well as making a donation to support us visit: http://bothhandsfoundation.org/luis-and-gentry-zuzunaga.aspx - Your prayers are very much appreciated!

P.S. Some of you will be receiving a letter in the mail with our flyer and a section to cut off and send in if you'd like to support us in this ministry. If you want to support the Zuzunagas through us, but don't receive a letter, you can do it through the link above. It's all to bring Maria home and help Louise!

UPDATE to Up, Up and Away!

noreply@blogger.com (Krista or Mike) — Thu, 05 May 2011 19:30:00 +0000

A quick update right before I head out the door--My corporate angel flight got cancelled last minute which at first made me think my plans with Kelly for the weekend were doomed. Then I searched and found one last ticket on a US Air flight from LAX to Richmond which took me into Richmond at the same time and day as originally planned and for only $445 round trip after taxes. The blessing of all of that was a dear friend popped by and dropped me an envelope...a gift of $200 to put toward that airfare! Amazing.

Then I was kind of scrambling to find hotel in Bethesda during the Mon-Fri time I'd be there...close enough to get shuttle service and not need a car. However, so many things were booked and most hotels were $250/night and up! This morning though, I called the International Guest House and talked to the inn keeper. It's run by a church group, is a bed and breakfast and is only $40/night. Imagine my delight when he said he had just one room for me and would actually be moving me into another room mid-week b/c they're kind of booked. It's truly amazing. They have international guests and group breakfasts, and at 9pm they sit around this great old home and have tea and cookies and conversation. I'm so looking forward to the experience! I've read great reviews of this place and it's only 4 miles from the White House and on the bus route that can take me to NIH in 30 min.

So that's all for now - going to L.A. right now to enjoy Cinco de Mayo with my friends the Dahls. And head out to the airport early early to see James McMillan, Mike's best friend from high school, who lives in Charlotte, NC where I'm flying into...he's flying in on the same airline at the same time from elsewhere and we'll meet for coffee at the gate before flying out again 40 minute later! Then off to Richmond to stay with Kelly for the weekend and her Dad in Centerville (my old home town) on Sunday night...Sunday Kelly and I are going to visit our old stomping grounds :)

Love to all! Krista

Up, Up and Away on a Corporate Jet to the East Coast!

noreply@blogger.com (Krista or Mike) — Wed, 04 May 2011 06:30:00 +0000

Hoping for a sweet ride like this one!

I was researching treatment options for chronic Graft-vs-Host disease which followed my bone marrow transplant and ran across a study being conducted at the National Institute of Health in Bethesda, MD. It's a historical study, but because GVHD affects all areas of the body inside and out, there is a team of specialists in every field who I will meet with over four days and receive all kinds of tests...CT scan, MRI, echocardiogram, pulmonary, dermatology, biopsies, oral, gynecological, etc. They meet together as a team when we're finished and decide the best treatment options for me, write a report and send it to me at home for my doctors.

It's a great opportunity to get everything looked at in one shot and get the cutting edge options that are available to try. The great news is that the flight out there is free for me as it will be on a corporate angel flight which is a network of Fortune 500 companies who've donated their extra seats when they happen to be flying from your area to where you want to go if you're a patient going to an NIH-sponsored treatment center. I think NIH counts! :)

I couldn't plan the trip because it is just what comes up in the system right before you are supposed to go. I can't tell them what day I want to go or pick the city of choice. But, the great thing is God is in control and cares about these details for me. As it turns out, I will be flying out of Long Beach this Friday, the 6th. It seems earlier than I'd plan because my appointments don't start until Tuesday, the 10th. However, it happens to be flying into Richmond, VA, home of my best friend from high school, Kelly Koch Jones. That right there is Providence, my friends! We're going to have a wonderful weekend together before I go up to Bethesda on Monday.

I don't have a return flight home yet, but that will surely come up just right and just in time. I am all for adventure and this whole trip sure fits the bill! I'm going to relish in it for a week even though I'm going to miss my family terribly. I was hoping to bring Mike and the boys since I have a seat for a companion to go with me, but the corporate jet rules are no children under 21 unless they're a patient. And with all their grandparents gone on their own vacations, and therefore no childcare, Mike is staying home with them. That's alright...we'll go again in the future when they're older and we can do it as a family and see more, but free would have been nice too!

As it turns out I'll be staying in a hotel near NIH so I don't have to rent a car (hopefully). NIH reimburses up to $50 a night for hotel and $8/day in food. That's will feed the rats of NIMH, but not me and only rats would stay in a $50/night hotel! The only hotels in that area that are available are $200 a night so please pray for provision for this as we are not in the green yet.

I'll take photos of the trip and try to update you on what it was like to be Queen for the day...riding VIP on a corporate jet -- don't I feel like all THAT!? Can you tell I am a little excited?

This is my theme song for the trip: Oh Virginia by Blessid Union of Souls - so great!

I'll be meditating on this verse as I fly from the west to the east coast even though I know that the Psalmist is referring to a much wider span! High in the air, I will feel His love envelope me as I imagine how small I am compared to God and His love as I'm whisked across the sky...may you be caught up by Him wherever you are!

Psalm 103:11-12

For as high as the heavens are above the earth,
so great is his love for those who fear him;
as far as the east is from the west,
so far has he removed our transgressions from us.

Trying to Spread the Message of Hope...Ultimate Blog Party 2011

noreply@blogger.com (Krista or Mike) — Mon, 04 Apr 2011 19:56:00 +0000

Welcome newcomers to my blog! I’m participating in the 2011 Ultimate Blog Party in order to spread the message of hope and encouragement to those who are seeking it.

My latest post, How a Horse Named Hero Changed My Life, which has received the most comments I have ever had on one post, is a good example of what I write about here. I am a homeschooling mom and survivor of leukemia (twice) who had a bone marrow transplant in 2009. It has been a long recovery process over the last two years, and my husband and I blogged about the whole thing, even in the darkest hours when it looked like I wouldn't make it. We offer encouragement and support for those who are suffering.

Comment below if you found the blog through the Ultimate Blog Party and thanks for visiting!

How a Horse Named Hero Changed My Life

noreply@blogger.com (Krista or Mike) — Tue, 15 Mar 2011 18:15:00 +0000

It has been two years since coming home from UCLA. That photo was me the week of Valentine's Day 2009 in ICU in an induced coma because all my organs had shut down. My friend is smiling because that's what you do when someone is taking your picture. I had no clue what was going on or I would have smiled too. It's a miracle I am here, yes. That's enough to make you smile. But the miracles continue as I walk with a marvelous God.

It's amazing that you still pray for me! Many think because the bone marrow transplant was 2 years ago, I should be "fixed" by now. I don't have AML leukemia anymore, but the side effects of the treatment, namely what comes with Chronic Graft vs. Host Disease following transplant are worse than most illnesses.

I have been in the dumps lately, completely discouraged as my face was falling apart - literally! Large patches of skin falling off and leaving tightness and burning, red skin beneath...painful and embarrassing. I was actually feeling shame for looking so ugly - no amount of lotion or ointment could cover it up - it's GVHD (Graft vs. Host Disease), a result of my bone marrow transplant. The transplanted immune system (from another human) doesn't recognize the body it's in and attacks it, actually trying to reject the skin organ. It's the #1 cause of morbidity in transplant patients sadly because it can go into every organ.

The outward appearance of it had been affecting me emotionally, increasing in intensity until the week of Valentine's Day when it got so bad that I started not even wanting to see people. I felt very unloveable and unacceptable. This of course was untrue, but that was the "voice in the head" which I attribute to the enemy of our souls who wants nothing more than to destroy us from the inside out.

Well, thank you all for your prayers -- God is always there, always watching, always cares. He spoke to my heart on that Thursday, February 17 through a radio show on Focus on the Family featuring stories of rescued horses and renewed hope...truly an amazing segment that everyone ought to listen to! For me, I'm not a huge animal lover like some are, but after this show I am more so!

One particular story, grabbed my heart so much I almost had to pull the car over. It was the story of Hero the horse. I'll let you listen to the story yourself at the link in the paragraph above, but what God spoke to my very heart that day was life-changing. In an overwhelming moment, God poured out love to me and spoke deeply to my heart that he loved me, that He had not forgotten me, that the problem with my face, the peeling, burning, redness, was all part of my ministry...that they are the scars I bear from my battle. That He is the ultimate Hero and was not ashamed to bear scars and come back to show love, redemption, hope to us, therefore I no longer need to be ashamed of these scars. My whole ministry through the battle was about love and hope and redemption and sharing that with others, and here I thought the GVHD which was visible on my face, making me "ugly" was not a part of that. Somehow it didn't count. It all counts. And in that moment in the car, with tears streaming down my face. I felt the incredible burden lifted, chains were broken and I was FREE.

I cannot express the incredible joy that filled my heart that day and continues to fill it -- even when someone asks me with a concerned look, "Ooh...you having dry skin or something?" (For someone to mention it with concern tells you how bad it must be when most people probably have some degree of dry skin!) Prior to February 18, that would have been fuel to drive me to be even more self-conscience. But no more! Now, I recall that day when God spoke to my heart that these are my battle scars to show others the power of God's love, hope and redemption. Like Thomas, after Jesus returns to the disciples after His Resurrection, I have something to show people that HE IS ALIVE, proof if you will. If I had a perfect healing, where you couldn't see any scars, the miracle would not have as long lasting, powerful and far-reaching effects.

So the other disciples told him (Thomas), “We have seen the Lord!”

But he said to them, “Unless I see the nail marks in his hands and put my finger where the nails were, and put my hand into his side, I will not believe.”

A week later his disciples were in the house again, and Thomas was with them. Though the doors were locked, Jesus came and stood among them and said, “Peace be with you!” Then he said to Thomas, “Put your finger here; see my hands. Reach out your hand and put it into my side. Stop doubting and believe.”

Thomas said to him, “My Lord and my God!”

Then Jesus told him, “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed.”

John 20:25-29

1 Peter 4:16 However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name.

Even though my scars are not "persecution for being a Christian" what happens is that I do get judged if someone doesn't know me...some even judge whether or not I'm a "good" Christian whatever THAT means, as if I have not had healing or have had problems for some reason of my own doing. Well, no longer will I be ashamed of the scars I bear...no longer will I be afraid, embarrassed or feeling unworthy of love...I know God loves me and that is all that matters. I will not hold back His love for others because of my scars (please forgive me for doing so). So obvious now that the Enemy of our souls has been at work here trying to eliminate my effectiveness to do His will on this earth.

Some may read of my experiences with God and think that somehow I am something special to be able to experience God, the God of the Bible, in such a way that He speaks to my heart and I can feel His presence and walk in His way. No! You need to realize that I am no different than you! God wants a relationship with you, dear friend, right here and right now. You don't have to "improve" to be worthy of a relationship with your Creator! He'll take you right where you are at, scars and all! Each one of us carries some scars of the battles we have faced...some are hidden on the inside, but the scars are there. Turn to Jesus and let Him be your healer and He will meet you in just the way you need Him to which might not look like the way He meets me, but meet you He will.

...bless you all for not being ashamed of me...

Here's a photo of Hero, the horse who resides at the Crystal Peaks Ranch in Bend, OR -- a dream of mine would be to take a road or plane trip to Bend and visit Hero in the summer. I received a lovely note from them inviting me anytime! Be sure to listen to the radio show Rescued Horses: Renewed Hope

Crediting this One to God!

noreply@blogger.com (Krista or Mike) — Tue, 28 Dec 2010 00:09:00 +0000

Luke 1:13 "...your prayer has been heard."

In my last post, I was given some ominous news about both legs having a bone infarct and possibly this would be in my hips, knees and shoulder as well. I did the obligatory MRI last week and the same doctor who had read the X-rays and told me it was osteonecrosis informed me right away that he had been mistaken. He now said it is clearly a stress fracture and nothing more. A follow-up X-ray of both hips showed them to be in fine shape, no bone infarcts!

That was quite a Christmas present to receive! I have a "boot" on the left foot which closely resembles the black Ugg-like boot on my right foot so you almost cannot tell! Says something about Ugg boots! I am trying to stay off it as much as possible to allow it to heal since the more I am on it, the more pain there is, especially when walking.

The fear of never healing has left though and has been replaced by new hope that I can recover, lose weight and who knows, though it would be a miracle, perhaps run again. With that hope restored, I have begun exercising again with my T-Tapp videos. I took a "before" photo today which I will not show you until a year from now when I get to take the wonderful "after" photo!

We had a wonderful Christmas Eve at Community Covenant and then a surprise invite to a friend's house for dinner and fellowship. Wasn't feeling so great so we left early and I had a stomach episode at home which I kind of felt coming on all day. Christmas Day was so nice and quiet, together as a family at home. The kids were way more patient then I would be at their age, waiting for us to get up, make breakfast, eat (an hour later), open one present, delightedly put that Lego set together, open another present, delightedly put that one together while Mike and I took our Christmas Nap on the sheepskin rug with the dog in front of the fire! They never asked if they could open a present. I would say, "Ok, I think it's time to open another present." I think the true meaning of Christmas really stuck this year!

I just realized today that I didn't take a single photo of our Christmas celebration because of feeling physically crummy I guess. On Christmas night, I made a huge error in judgment. We went out with friends to our favorite Chinese restaurant, China Pavillion. First error in judgement was going there on Christmas Day because it was slammed and the staff was completely overwhelmed! Second lapse was when I decided to try one little bite of a seafood fried rice including one little-mini scallop. I thought I would challenge my system to see if I truly was allergic to shellfish or if I'd "outgrown" it since it arrived only after my transplant. I couldn't be more wrong...had a doozy of a stomach incident about four hours later. I'm done with shellfish.

Thank you to all of you who have sent wonderful cards, treats and presents this year and even to those who are like me and have had every intention of sending something, but haven't been able to! Please understand that we are so late in getting these things out because of how bad I've been feeling this month. I am working on it little by little though! If I were a company you'd ordered from, you would be a disgruntled customer by now, but thankfully you are family and have a larger capacity for grace.

Have a Happy New Year!

Merry Christmas, Dear Ones!

noreply@blogger.com (Krista or Mike) — Mon, 20 Dec 2010 21:34:00 +0000

I am sitting here in my messy house, alone because the kids and Mike went to Carlsbad for 4 days, and battling the ants that are packing their nests up to move inside with the daily drenching we're experiencing with the Pineapple Express. Instead of getting busy cleaning I am going through the cards and notes I received from you all almost two years ago when I went through my bone marrow transplant. What a blessing to remember how much I am loved and I'm once again drawing from the encouragement as I face life with disability.

As you might have heard, I was told last week that the excruciating pain which I described as feeling like my ankles are breaking, was not an ankle sprain or fracture, but a "bone infarct" -- you have heard of myocardial infarction? It's like that but it's in the bone -- the blood supply was cut off in the bone marrow and it died, making the bones very fragile. It's not usually in that area (ankles or at the bottom of the leg) and is suspected to be in my hips, knees and possibly shoulder. I have to get an MRI this week and see an orthopedic surgeon, but the news is that I cannot run or jump and that dead bone does not regenerate new bone if it's pretty far gone. In early stages of osteonecrosis, i.e. dead bone, there would be no symptoms, and they can try to remove plugs from the bone marrow to stimulate new growth. Ouch. I was told by my UCLA doctor that this condition is not uncommon in his patients and is usually due to the prednisone which is why they try to get you off of it as quickly as possible. I only wish I'd known that I should have learned to live with side effects of GVHD that deal with the skin and fatigue rather than the side effects of prednisone which are so much worse! They never give you the details until you "need to know!" This doctor also told me to live with the pain as long as possible before getting any joint replacements (hip, knee, etc.) because at my age I'd have to get them replaced in the future since they don't last forever. I'll also probably be on some kind of medication to prevent more bone loss.

I had to grieve for a few days because it was the first time I had to swallow the reality that I would never run again, never return to my old self, back to the glory days of those 2 years in remission where I experienced the best health of my life. I remember the feeling of that so well thinking then that it was like a taste of the unhindered life we'll experience in Heaven someday. I felt completely free and energetic and alive! Well, that must have been just a wonderful gift from God to enjoy for a season, making me crave Heaven even more because that is what it will be like. Through the few days I was grieving, I clung to the truth of Philippians 4:6-7 which says:

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

I knew he'd bring me through it and restore that peace in my heart, and I told myself that even as I cried through the pain. Sure enough within three to four days I was not only at peace about it, but over the next week the calling on my life to share the hope I have in Christ has been renewed. He has allowed me to share in the sufferings of Christ and I want it to be used by God to bring others to His glory through it.

Now, I turn back to these wonderful cards, and would like to share some of the encouragement I received...

A friend writes that she prays the power of our God and His name will encourage me:
El Elyon - "The God Most High" He is the Sovereign God
Elohim - "The All-Powerful One, Creator"
El Roi - "The God Who Sees Me" God sees us in all our circumstances
El Shaddai - "The All-Sufficient One"
Jehovah Rapha - "The Lord Who Heals" He heals physically, spiritually and emotionally.
Jehovah Shammah - "The Lord is My Companion"
El Olam - "The Everlasting God"
Jehovah Rohi - "The Lord is My Shepherd" - God takes care of us.
Jehovah - Jireh - "The Lord will Provide"
Jehovah or YHWH - "I Am" - He never changes; His promises never fail

Isaiah 40:28-31 Have you not known? Have you not heard? The everalsting God, the Lord, the Creator of the ends of the earth neither faints nor is weary. His understanding is unsearchable. He gives power to the weak, and to those who have no might He increases strength...those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles. They shall run and not be weary, they shall walk and not faint.

May God answer all the prayers that have been said for you by giving you new strength, health, and all His blessings.

Have a Merry Christmas!

Initial Fundraising Goal Achieved!

noreply@blogger.com (Krista or Mike) — Sat, 14 Aug 2010 21:15:00 +0000

I just received a package from my mom last weekend. In it was the final checks which totaled over $4300 from the fundraiser she organized with friends in Bailey, CO at the end of June! I was amazed at the generosity of that little town of Bailey, CO. They put on an aerobics-marathon with some ladies, even an "elderly" woman working out for 5 hours straight! No kidding, how did she do that? So they were sponsored for the time they worked out. They also had a bake sale because they obviously needed the extra calories that day! :) They had t-shirts made and had a dozen or more local sponsors! They ALSO had a bike rally that ended with some raffle drawings at The Crossroads Bar & Grill which supported us with 10% of their proceeds. Two local papers ran stories on it and it was a real success! Amazing! Such a blessing...

Here's the Thank You note I sent to the folks of Bailey who came out. Glen Moses, my mom's husband, put a nice brochure together which included our photo, this letter and the summary of the event for everyone, and even had it framed as a gift for the sponsors. Thanks, Glen!

July 7, 2010

Dear Mom,

Please pass along this note of thanks to all the wonderful people who volunteered
so much time, talent, and money to support our family. I never knew what a special
community you have there until now. These folks, while friends to you, are strangers
to me, but miles and unfamiliarity were not blockades to their kindness and generosity.

Those who know you obviously love you, those who don’t know you must love
their fellow community member or fellow man in general. That says a lot about a town.
I too have found a lot of local support and love from my own hometown of Santa Barbara
in the form of meals, childcare, and services like cleaning, organizing and mowing our
lawn. I know Santa Barbara has a few sister cities, but I wonder if Bailey could be added
as a sister city of Santa Barbara. I am going to look into how that works through the
Chamber or Mayor’s office, but if nothing comes of it, Bailey will now be a sister city in
my heart.

My appreciation for what you’ve done for us is so much greater than any
thank you note can express so I’ll close for now. I look forward to visiting Bailey
in the future and giving you all big hugs, each and every one of you - I mean that!

Love,
Krista
(for the English Family)

So, our initial fundraising goal was achieved. That redeems what set us back a bit. Our continual monthly medical expenses for recovery continue and average $500-600. Thank you for your support! Even if you haven't given or are able to your prayers mean SO much!

After a Long Absence...

noreply@blogger.com (Krista or Mike) — Sat, 27 Feb 2010 18:50:00 +0000

Now that the requests are coming in from all directions, it’s finally time to update you! It’s been long while since the last update for three reasons. First, back in November my doctor had reduced and taken me off of prednisone (a steroid that I took to keep GVHD (graft vs. host disease) at bay. It suppressed my immune system so that it wouldn’t attack my own body; Well, stopping the steroid caused the GVHD to get stronger. If you saw me during that time, my skin was so flaky that I couldn’t see through my glasses for all the snow! GVHD affects the skin on my eyelids, nose, face head and hands and anywhere skin meets skin at a crease. It is dry, red, stinging, and flaky. The skin will wrinkle before your very eyes as GVHD waxes and wanes. Lately on my hands it’s been actually separating causing little cuts all over. Ouch!

As I stayed off the steroid through the holidays, things got worse. I had a cough that would choke me just above the collar bone, so badly that I couldn’t breathe and ended up in the ER once because of it. They called it bronchitis at the time, gave me cough syrup with codeine and an inhaler for the asthma part of it, but it never got better, only worse over the course of 3 months. I would have the coughing attack daily, worse when I spoke for very long, and worse at night. Daily or at least every other day I was throwing up from the out-of-control coughing. They tested me for every virus out there and pneumonia too, but nothing ever showed up to explain it. After ruling everything out, finally my doctor informed me that it was graft-vs-host again attacking my stomach this time causing the gasses from the gastric acids (say that 10 times fast) floating up and burning that place above my collar bone causing me to cough and gag and expel my dinner. Easy solution though. Back on steroids at 20 mg and double my Protonix. Within 2 days I was almost 100% back to normal. No more coughing, no more vomiting, regained my appetite and had super energy (love that!) And bonus, all my horrible skin problems cleared up!

Two weeks later the doctors want to start weaning me back down off the steroids because you don’t want to live on them long term. It’s not a healthy way of getting your energy either even though I’m loving it. So at 15 mg. I noticed right away the GVHD returning to attack my skin. One problem is the weather has been so nice and I’ve had a ton of energy causing me to be in the sun too much (even 5 min. without protection is too much) and causing me to overdo it because of all this energy! Both those things cause the GVHD to flare and combined with a reduction in the steroid dose I notice it.

The skin separating is the most painful and annoying thing, so I called my doctor one day to ask him about it and he informed me that I am going to have chronic Graft-vs-Host the rest of my life so I need to learn to tolerate some level of symptoms that are not life-threatening. That’s a bummer, but a challenge I’m willing to endure while calling on the Lord for healing and restoration.

So being completely exhausted and sick (non-contagious) non-stop November through January was the first reason I couldn’t bring myself to blog. The second reason is I’ve been living like never before! Well, living like a normal active person as before anyway.

The third reason is a by-product of the second. Because I’ve been living a full life, there have been SO many happenings, so much to tell you, so many amazing touches from God in our life I could hardly keep up on all of it to share with you. I try to do a little through Facebook so if you are not a friend of mine yet on FB please add me so you can keep up and see all the wonderful photos I’ve been posting of life through these more energetic eyes. It’s been a lot of fun to get back into photography, taking photos everyday and sharing the good ones.

In order to not bog down the blog with one giant novel, story after story of God’s amazing love, I will have to do a series of blogs – challenging myself to a daily blog again. But give me some grace while my mom is here visiting starting tomorrow. I’ll try to blog every other day for the next week while she’s here.

Next post will be most interesting as I reveal the photo of me from 1 year ago (around Valentine’s Day actually) and show you a photo from today…shockingly different! Until then, be at peace and know that God loves you no matter what your situation! He really does. Just turn to Him and ask Him to show you Himself today!

The reason I blog…

Colossians 2:1-3

I want you to know how much I am struggling for you and for those at Laodicea, and for all who have not met me personally. My purpose is that they may be encouraged in heart and united in love, so that they may have the full riches of complete understanding, in order that they may know the mystery of God, namely, Christ, in whom are hidden all the treasures of wisdom and knowledge.

What is Critical Illness Polyneuropathy?

noreply@blogger.com (Krista or Mike) — Wed, 11 Nov 2009 04:35:00 +0000

Now I know the reason for all the weakness I've had and why I've hit that plateau over the summer. I seemed to be recovering with leaps and bounds in the spring through mid-July then wham! I hit that wall. Since then I've struggled with stiffness, lack of feeling in my feet and hands and muscle weakness. All of this increases with fatigue and the length of time I've been standing, walking or even sitting!

As a result of the numbness I have taken a couple falls because I didn't realize my feet and bottom of my leg had no feeling when I got up quickly to answer the door or chase after an animal. Dr. Schiller at UCLA suggested that I see a neurologist about it. I was slow about doing so and then I started getting migraines once a week. After experimenting, I'm attributing the migraines to a side effect of the medication which I take twice a week. Changing the days I take it to days when I am not under a lot of stress with driving to and fro has really helped, but it was the migraines that led me to call and schedule that neurology appointment with my old (meaning former) neurologist, Dr. Delio. He's so great! He remembered me, every detail from how we first met eight years ago when he suspected I had lupus (which he was right) to my first time with leukemia three years ago.

After hearing what my transplant experience was -- from the multiple organ failure and coma to the long stay in ICU and the hospital in general -- he put me on the table to do some tests on my nerve function. First he tested my muscle strength by doing resistance pushing against my legs, feet and hands. Then he took the sharp end of a safety pin and proceeded to stab me with it several times starting at the tips of my fingers and moving up my arm. Didn't hurt a bit. Could hardly feel it even up my arm. Then he did the same with my toes up to my ankles. Couldn't feel it, but when it got to my ankles it hurt which is probably how you would feel if you felt that prick on your toes. So I was pretty numb in my toes and feet and hands and arms. Next he took a 2-pronged "boingggg" fork to see if I could feel the buzzing made by the "boingggg" when he hit the fork and it kept ringing. He put that up to my knee which was overly sensitive and to my feet which I couldn't feel - very strange! Next he put the other end of the fork on my foot and asked if it was cold, but I couldn't even feel it. Then he showed me how cold it was on a part that can feel it! Brrrr... Then he tested my reflexes. Doctors always do that so quickly I don't know what they find.

Dr. Delio pronounced that he was pretty sure I have "Critical Illness Polyneuropathy" with leg weakness. It will take a year to recover from this. Doctors aren't sure the cause exactly, but it happens to patients who are critically ill who have organ failure and have been in the ICU awhile or the hospital a long time. It could be medication-related or from the sepsis that occured or the cytokines from the inflammatory process during that time that crosses the blood-nerve barrier or something like that. At any rate, when you're that sick the nerves get sick too. It's like an infection of the nerves. That's how Dr. Delio put it. He's also testing my B12 and Folic Acid levels to rule out another cause for my neuropathy, but was pretty sure he's got it right.

I asked if it's too late to repair the damage, and the verdict is that the sooner I were to start treatment the better, but it's never too late to make progress. So, as soon as possible I'll begin neurology-based (as opposed to sports medicine-based) physical therapy twice a week for six weeks initially. I asked him, "So just moving around the house, standing to cook dinner, and things like that won't help me get better?" He confirmed that indeed I need rehabilitation for this kind of problem. Since summer, I've wondered why I couldn't seem to get better and why I couldn't stand or walk for more than 10 min, and will I feel like an elderly person for the rest of my life (and if so, what will I feel like when I'm truly elderly!?) It sure is nice to know that I can get physical therapy now without wondering if I really need it. Until now I thought of it more as a luxury. I mean c'mon! They have a swimming pool and everything! I know God will provide all we need so I'm not going to worry about the added expense of yet another treatment. Please pray for His timely provision as well as healing for my nerves and muscle strength. Thank you!

Quick UCLA update as well: I had my monthly check-up last Friday at Dr. Schiller's. I was disappointed at first because he'd passed me off to his nurse practitioner. But she was good enough that I got over that pretty quick. I have a LOT invested at UCLA and want my money's worth if you know what I mean! So the good news was that my bloodwork was good, no infections showing which was confirmation that the antibiotics had been sufficient in knocking out my kidney infection from a couple weeks prior. I also have been on Tamiflu since Friday because Adam came down with a fever, runny nose, aches, fatigue, headache and eventually cough. Dr. Schiller prescribed it for me as a preventative.

During my time there, low and behold, who should come see me and Mike, but Russ Busby, an old chum from high school whom I've reconnected with via Facebook over the last year. I went to high school in Chantilly, Virginia and he was visiting Los Angeles over the past few weeks. After having followed our blog, and because of the miracle of Facebook, (yes miracle!) Russ visited me and got to meet Mike for the first time. We were able to catch up a bit, give hugs and even pray together before he had to leave. I love Facebook!

After my appointment was finished, we headed home, but first we called our dear friends Gene and Jeannie, parents to our dearest friends from Colorado Springs, Lisa and Rick Weaver! Gene and Jeannie live in the most amazing house in Westwood right next to UCLA. They opened their home to Mike and his mom during my time at the hospital for anything they needed, laundry, food, a shower, a place to stay. They are very hospitable and giving people. I am so blessed to know them! It was my second time visiting their home myself, but the first time I was able to climb their steps into their home! We had stopped there on my way home from UCLA the very first time I was discharged in March, and I couldn't walk yet and the stairs were too steep to attempt. This time I got to enjoy their lovely home from inside and spent a good hour getting to know these wonderful people. Gene is a crack up with all the practical joke stories we got to hear. I'll share them with you if you ask me personally, but I'm not blabbing them on the internet for everyone which I'm sure Gene will appreciate! Thanks Lisa for sharing your dad and stepmom, and we can't wait to see you when you visit Coronado!

I hope everyone has a WONDERFUL Thanksgiving this year. We'll be spending the holiday with Mike's parents in Carlsbad. Lord-willing we'll also be visiting with Lisa and Rick in Coronado. We are thankful for every day and I am putting together a gratitude journal of 1000 things to be thankful for - from the obvious to the small - especially focusing on redeeming the ugly in life by being thankful anyway. For example. #1 fallen leaves, #2 scribbled on white boards, #3 fingerprints on windows, etc. Now, you try. And the reason for my gratitude for things that don't seem so great at the time? It's based on John 13:7, which reads, "Jesus replied, 'You do not realize now what I am doing, but later you will understand.'"

Another new tradition we're doing this year is a Thanks-Giving Tree (Click here, but come back) From that blog, I downloaded a template of a tree to print out on cardstock and colored leaves of different kinds to print out. Each person will have his own tree. Each day we'll write one thing we're thankful for today and on another leaf one thing we gave of ourselves to someone else. At the end of the month there will be a whole tree of ThanksGiving which we'll all read to each other.

What are some traditions you'll be incorporating into your celebration this year? Comment below.

Here's the verse for today's blog. I thought it appropriate to illustrate to whom we are to show true thankfulness, true THANKSGIVING! As a certfied foodie, I confess that in the past I have lusted after many a Thanksgiving dinner. When you are carving into your turkey this year, will it be the prayer of thanks that is motivating you or the greed of the feast?

Luke 17:11-19

Ten Healed of Leprosy

Now on his way to Jerusalem, Jesus traveled along the border between Samaria and Galilee. As he was going into a village, ten men who had leprosy met him. They stood at a distance and called out in a loud voice, "Jesus, Master, have pity on us!"

When he saw them, he said, "Go, show yourselves to the priests." And as they went, they were cleansed.

One of them, when he saw he was healed, came back, praising God in a loud voice. He threw himself at Jesus' feet and thanked him—and he was a Samaritan.

Jesus asked, "Were not all ten cleansed? Where are the other nine? Was no one found to return and give praise to God except this foreigner?" Then he said to him, "Rise and go; your faith has made you well."

No Such Thing As Normal

noreply@blogger.com (Krista or Mike) — Mon, 12 Oct 2009 21:06:00 +0000

It's that time again...one month since I last wrote! No news is good news, right? We went to UCLA last Friday for another quick and uneventful appointment. My numbers are good, though I don't know why my platelets are hovering lower than normal last 2 months at 130,000. I'd like it to be at least 150,000. The doctor doesn't seem concerned by it at all stating that those numbers fluctuate greatly and it's not that far off, but still...I guess it's the perfectionist in me that wants to be in the normal range!

Life is settling in now that school and soccer are underway. The Fall chill is finally upon us! We've already had one family outing to Lane Farms pumpkin patch which lies a stone's throw from our house (though we have to walk around the one row of houses to get there since going through our neighbor's backyard & secret Lane Farms entrance just isn't cool.) Really looking forward to Christmas when we take nightly walks to enjoy the old-fashioned Christmas ambience & all the joy that is just milling about as people pick out their tree. Enjoy the pics from yesterday's excursion! (See all the pics on Facebook under my photos tab and the album "October 2009.")

While the kids are at Artios Arts Academy today I've been trying to get housework done. I'm so inspired and motivated! I went for it and did quite a bit. I thought it was a lot until I sat down and looked at it--one would never know I did anything! My body feels like I worked for 6 hours straight, but in reality not much got accomplished. Sure I folded and put away 3 loads of laundry, picked up, swept & vacuumed, and wiped down the table, but my mother-in-law could do that in 20 min and still change sheets, pull weeds and trim bushes for another 3 hours! And she's 69 or 70! These are the things I wrestle with the most these days: my limitations, feeling like I don't measure up b/c I can't do it all, as well as the physical stuff of medication side effects, nerve damage (my feet especially hurt with this and also when I look down I get a jolt of buzzing electricty from my neck down to my toes which is really uncomfortable), and GVHD (Graft vs. Host Disease). So those are all things you prayer warriors can be praying about this month!

Today I realized something that might be a cause of the frustration I've had periodically throughout my recovery so far. All this time, I've been treating the bone marrow transplant like it was a temporary inconvenience, as if I'll get this thing done and get back to my normal life. Problem is I didn't take into consideration that life will never be the same. There is no old normal life to get back to...I've been fighting giving up of my old self, my old plans, my old dreams. I really need to focus on the Lord more and let His ways become my own--no more fighting! Living in the now is what's most important. Being present. I may never get back to "normal" (at least that is how it feels to me.) Is suffering my ministry? I think it might be, at least for now. I will try my best not to complain anymore! I gladly receive all of this and give it up for the sake of knowing Christ and the power of His resurrection more.

The following is my life verse and was written in an inscription in the first Bible I was given by a family who was sharing with me when I was not a believer in my need for a savior. Charlie wrote, "My prayer for you is that you may know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead." Within 4 months I had moved across the country and God spoke to me in very powerful ways, both supernaturally and through that Bible! I accepted Christ in September of 1992. Who knew at that time how meaningful these verses were to become to me. I've copied the verse in it's context below. So Charlie's prayer for me in 1992 is my prayer for you today!

Philippians 3:7-11

But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which is through faith in Christ—the righteousness that comes from God and is by faith. I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead.

To Be Glad of Life, (plus a humble request)

noreply@blogger.com (Krista or Mike) — Sun, 13 Sep 2009 04:37:00 +0000

I thought I'd take the time to update you about my regular check-up I had at UCLA on Friday since so many are curious about how it went. Two hours down with no traffic until we hit the Wilshire Blvd. off-ramp due to the September 11 memorial festivities that were happening at the nearby veteran's cemetery. Only 15 minutes late because of it, I was able to sit and do my devotional while I waited for my name to be called in for blood work. Mike had just dropped me off because we had Headband with us and they took him for a stroll through Westwood and walked around the campus a bit before heading back an hour and a half later to pick me up.

After a quick blood draw, I went back out to find my seat taken so I moved across the room to another location and finished my with the Lord and writing in my journal. Then I pulled out a cookbook, Make-a-Mix , and offered an empty seat to a lady nearby so an elder couple could sit next to each other. After a few minutes, the lady commented on the recipe book and I shared it with her thinking she was interested in food, but quickly realized she was not a foodie at all, but just wanted to talk to someone. She was there because of a mysterious illness and was feeling frustrated and nervous about it. She goes to UCLA for iron transfusions because for some reason she is unable to retain iron in her bone marrow and has suffered with this for 3 years with other doctors who remain mystified. Now she has Dr. Schiller and I know they'll figure it out - besides now I'm praying for her and God knew all about it! While we sat another young guy sat across from us and as soon as she got called in, he seemed eager to start a conversation as well. We hit it off talking about learning Japanese and other cultures. It was lively and I was disappointed it had to end when I got called into see the doctor.

The above scenario illustrates why, at this point, I decided not to get an iPod, even though Mike won a $50 gift card from his company the same day Apple came out with the latest iPod models which really tempted me. First of all, we can't afford something like that which is not absolutely essential to living, and then second, relationships. If I had an iPod, what happens, almost every time I visit the doctor's office, couldn't happen. Suddenly, I'd be unapproachable in my isolated world of music, video or gaming. Imagine all the people who would remain alone in their heartbreak or troubles that I'd be basically ignoring. I really could only use an iPod if I had car speakers for it to listen to music and podcasts, which would cost even more money. I'm not saying I'll never own an iPod, but I think I will only reconsider it when I am once again walking longer than 10 minutes or jogging again, and when we've gotten through the medical and prescription bills and property tax crisis.

I went in to get my blood pressure check (perfect), temperature (perfect) and weight (not perfect) ha--not perfect, but not bad either. My bloodwork was all normal and I only have to see him once a month now. I sat in the tiny treatment room waiting to be seen, and in walks, oh I forget his name, but he's the intern that sees me often before Dr. Schiller comes in. He interviewed me and then I heard him out in the hall filling in Dr. Schiller on what I said, minus my juicy details, all the good stuff that makes it sound much more interesting. Then I overheard Dr. Schiller remark, "Well, yes, she is doing remarkably well. Less than 10% of people who have been through what she's been through survive [liver & kidney] failure." He used bigger words - hematic failure and I forget the kidney term, renal or nephrotic? Anyway, it was just another reminder of how awesome God is and what a miraculous thing He did to keep me here, with my brain functions restored. I've been crying a lot lately about this. I'm not sure why.

I struggle with feelings of not deserving God's love for all He's done for me, while at the same time feeling a little envious of other Christians who have gone through the same thing with flying colors. I can be crying about the one and then crying about the other at the same time - bizarre! Either way, I don't get it, but I don't have to get it to know that God is an amazing God who has a wonderful plan for my life and is using all this for my good because I love Him.

I've also been struggling, (and I share these things so that you know how to pray for me), with, what I guess you could call, perfectionism. In my mind, I have all these grandiose ideas of how I need to take care of life - my family, church, friends, the home, school, exercise, eating well, etc. When I attempt to do these things I think I really need to do, I find I can't possibly do it all. It really is too much, but who doesn't feel that way? To me, this doesn't seem like too much in my mind. I'm trying to learn to be kinder to myself, but it's very hard, especially since we don't have the help we once had because I look like I've come so far and don't need help anymore. And I can't afford to hire help, so I'm feeling very blue lately that I can't get it all done. The areas I need help in are cleaning, organizing & yard/patio/garden clean-up. If you feel called to one of those areas and would like to help, I'd take you up on it! I just have a hard time calling up people and asking myself because, again, I look like I'm doing so well. Yet I've been struggling with fatigue and migraines lately and I'm trying to prepare for school starting Monday. I've also been experiencing new symptoms of neuropathy that my doctor would like me to investigate with a neurologist. My feet and lower legs go numb, as well as my elbow and other parts, but the feet is not good when it causes me to trip and fall frequently. I walk gingerly in order to prevent this, but with a tailbone injury I had a couple weeks ago, it's been hard to bend over to pick up things. This also makes it dangerous when I don't have a clear pathway!

Speaking of the tailbone injury...I forgot to tell you how I did that one. It was so hot a couple Saturdays ago, I was nearly delirious. The boys and Mike were out and ice packs weren't cutting it, so I decided to take a cold bath for the first time in my life. I turned the water on and left the room like I always do when I run a hot tub. I didn't realize the cold water comes out triple fast and when I returned that tub was overflowing! I ran in to shut it off, not seeing the 1-inch of water on the marble floor and SLIP, KABBAM, OW! I fell onto my tailbone and lower back and back then head all in one instant. My dog took off and I found him later in his kennel, head down. I told him he was not cut out to be a rescue dog after running off like that when I was screaming in pain and crying for help. Sheesh. Two weeks later and I'm still hurting and can't bend over or get up quite right.

Once we get on our new routine I think life will get easier. The kids are going to be at Artios Academy on Mondays from 8:30-3:30 so that's the day I'm planning my productive days of cleaning as well as planning, and being extra nice to me. Again if you have any time on Mondays to spare, I'd love the company and extra hands, even if for just an hour. Feel free to email me or call. Love my dear friends, yet hate to ask :(

This was so special to me I wanted to share it with you and keep it somewhere I could re-read it anytime I need the reminder! This is exactly what I've been feeling about life after nearing "the threshold" earlier this year. Take it to heart and rejoice! We have an awesome God!

To be glad of life, because it gives you the chance to love and to work and to play and to look up to the stars; to be satisfied with your possessions, but not contented with yourself until you have made the best of them; to despise nothing in the world except falsehood and meanness, and to fear nothing except cowardice; to be governed by your admirations rather than by your disgusts; to covet nothing that is your neighbors' except their kindness of heart and gentleness of manners; to think seldom of your enemies, often of your friends and every day of Christ; and to spend as much time as you can with body and spirit, in God's out-of-doors--these are the little guideposts on the footpath of peace. ~Henry van Dyke

About Henry van Dyke:

Born November 10, 1852, in Germantown, Pennsylvania, and educated in theology at Brooklyn Polytechnic, Princeton, and Berlin, Henry Van Dyke worked twenty years as a minister, first in Newport, Rhode Island, from 1879 to 1883 and next in New York until 1899. His Christmas sermons, his essays, and his short stories made him a popular writer. His poems reveal a classical education as well as a common touch in matters of faith. He became Professor of English Literature at Princeton in 1900. During World War I he acted as American Minister to the Netherlands (1913-16) and then naval chaplain, for which he was awarded the Legion of Honour. He died April 10, 1933.

Colossians 1:10-14

And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, ¹¹being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully ¹²giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. ¹³For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, ¹⁴in whom we have redemption, the forgiveness of sins.

The Amazing, Disturbing, Yet Worth Celebrating News at UCLA Today

noreply@blogger.com (Krista or Mike) — Sat, 15 Aug 2009 07:17:00 +0000

(Note: Many of you don't realize to click on the clickable links! Doing so makes these things make more sense - so be sure to click when you see a phrase underlined and in a different color!)

This is a longer post, but it's because there's almost a month since my last one, but there is lots of fun & interactive stuff to share...be sure to read to the very end to see a smathering of photos from today too. Oh, and feel free to comment...I miss those things, and when i see my blog all comment-less I hear Barbara Streisand & Neil Diamond singing, "You Don't Bring Me Comments Anymore" - it's sick I tell you! "...you think I could learn how to tellllll you goodbyyyyye...," but no. You have the power to stop this madness, so comment if you enjoyed today's post :)

Before I get to the juicy stuff though, let me "quickly" update you since the last post. Let's see, there were no new ER visits thankfully...oh wait, just one, but it was not stem-cell transplant related! I overdid it and was more fatigued than usual, when I got up off the couch in my UGG boots parallel to the thick-pile floor rug which my foot kind of stuck to as my right ankle rolled outward causing me to fall hard on my right side and hitting my noggin on the way down on the corner of a table. By the way, now I know why they call them UGG boots - ugh, that hurt! The pain from the ankle and the snapping sound is what caused me to fall even harder because in the whirlwind I was more concerned about my ankle then the rest of me and wanted to grab it. Mike saw me fall and exclaimed, "Who cares about your ankle, how's your head?!" Of course, this happened on a Sunday and since I heard a snap, we thought it best to go to the ER to get x-rays. Turns out there was no fracture, just torn ligaments so I received an air cast to protect the ankle from sideways motion and had to stay off of it until I could walk on it without pain. Swollen, painful and bruised I had to lay it up for 48 hours, icing frequently, but I started taking my Vivix again and things started healing rather quickly so that by today I'm able to walk on it for the most part, but can't bend it just yet and cannot drive. It still gets painful if I've been on it too much and I go back to the crutches for that. Thank you Pauli for letting me borrow the crutches!

That was the most exciting thing that happened this month as far as "emergencies" were concerned. That was the end of a very physically active week for me. I said I had overdone it and here's how - I'd been doing well going on walks with family and the dog, and Mike seemed tired and I thought he needed a break. So, waking up early one morning (6 AM) I decided to take the dog on a bike ride before anyone woke up! That way Mike could have a day off from walking or riding the dog. Riding the dog, meaning he takes him on bike rides in the morning usually. Riding the dog is easy with our K-9 Bike Jogger we scored off Amazon. It's the best! I have to look down to see that the dog is still there sometimes because there is no pulling you over on this thing - you just can't even feel it, even when bunnies & squirrels cross your path!

I rode to the bike path, then thought I'd go as far as the bridge because, so far, it was easy peasy which surprised me since I haven't ridden a bike in eons and I'm pretty unconditioned right now. I decided to go to the next milestone, then thought ohhhh Goleta Beach is just a little further, I can do it! I've so desperately wanted to go to the beach and introduce our new dog to the beach too, but being sun sensitive right now prevents me. It was so early though I went for it. As I neared the beach, I started tiring, and realized I'm going to have to get home too, woops! It's 4 miles to the beach and that means 4 miles back. I took a break at the beach and let Headband play. He loved digging in the sand - wish I had a picture. Since it's a leash-on beach, I followed the rules and kept him on the billyclub-style k-9 jogger leash I detached from the bike. Here I was standing, facing the dog, relishing in his delight of digging to China when BOLT, he takes off between my legs to run like a greyhound in a moment of glee. You guessed it (remember I was facing him, his head is down, he's digging to China) and I'm pretty close to him with my legs spread apart bent over a little, so I got flipped! Sand is soft thank goodness! And on top of that I lost multiple layers of skin on my thumb in two places along with a blister. There was not a soul at the beach that early, so off-leash he went for a spell because I wasn't willing to do anymore gymnastics and wanted to keep my remaining dermal layer.

Oh, I failed to mention that at the beginning of our bike ride, we were just heading down the bike path when a man and his two dogs, 1 an australian shepherd, came out from the wooded area off-leash (there are signs, people, that say clearly leashes are required along the bike path). The aussie came charging and circled us so fast that it caused Headband to screech to a halt and jump to the other side of the bike in some supernatural way, causing me to fall over and get a nasty scrape up and bruise on my right shin! Here I am holding my leg on the bike, my dog is tangled and my bike is still keeled over while the guy is yelling for his dog to come and reporting "he's good, he's good, he just wants to play!" I'm wincing and moaning (appropriately so, not putting on a show mind you) and he offers no assistance, no apologies, no "are you ok?" - nada! Can you believe it? I'm learning a lot about human behavior through owning a dog let me tell you, LOL! That was at the beginning of my journey and I kept going! Then the beach incident, then getting home was tough with the hard bike seat and the 8 miles total - at least it's flat! I was just a-prayin' at the end, "I can do all things through Christ who strengthens me! Please Jesus, help me get home...almooooost therrrrre!" So you can see why in the end, I really overdid it.

When I got home, it had been an hour and 15 minutes. Mike asked, "where did you go?" When I told him he was surprised and said he's never gone that far! Ha...I really am over-ambitious; I just can't help myself! I didn't stretch that much either, but afterward had a Physique shake which rebuilds muscle after strenuous exercise. It's what I used when I was running and it works great - I had no sore muscles after this experience (and none when I began running for the first time and was running a half hour every other day, amazing huh?) If you are into running, biking, or other forms of regular workouts, you'd love Physique too. Sidenote: My Shaklee business has been running on its own even through the transplant and recovery and now that I'm that I'm getting stronger I'm able to do a little more work on it, just a little. I love that you can still earn an income despite being laid up with a great company like Shaklee. It keeps getting better too so if this economy has you down, let me know if you'd like a part or full-time opportunity to be in business for yourself, an award-winning business that pays, doesn't lay you off when you get laid up with a major illness or other major life event, and has quality products that really make a difference in the health and lives of others, as well as taking better care of our world just contact me through my website.

It took me two days to recover from the beach bike ride and that's when I rolled my ankle. I think fatigue played a factor. Funny thing is at the ER the nurses and doctor looked at my ankle and then remarked, "oooh I see where you got it here too when you fell," referring to the bruising and scabs on my lower shin from the bike accident. I had to tell them, "No, it's been a busy week."

I know, you were hoping for a "quick" update before the juicy details of today. I'm getting there, but thought you'd enjoy that fun little story. Ok, so with my ankle laid up all week it was impossible to get anything done. Also Mike had major deadlines at work this week and worked late and so we were slightly behind. I caught up on the basics on Thursday, but packing for the trip and preparing for a get-away weekend seemed impossible. My friends Carisa and Glen are on a road trip and offered their house to us for the weekend, even letting us bring our dog! Thanks guys! So that meant packing for one more kid and giving him a nice dog bath on top of our regular packing, laundry, food prep, loading the car, etc, etc. We managed to get it all done making us quite late for our 1:15 blood draw appt - missed it by an hour, but was pretty much on time for the doctor appointment which follows it by 1 hour.

Here's the funny part! I called the office when we left Santa Barbara because it was noon and we were stuck in the worst Montecito construction traffic! Knowing I'd be late, and not wanting to lie about the reason (that's always tempting) I just told her we were stuck in traffic and it looks like we'll miss the blood draw appt. The nurse then asks, "Oh, where is it so we can know for our other patients who might be stuck in the same traffic." Oh nooooo! She's going to know we just left our house at noon in Santa Barbara on a Friday when it takes 1 1/2 hours to get to UCLA with no traffic! I replied sheepishly, "Oh no, we're too far away for it to affect your patients." She really wanted to know..."Well, where are you right now?" Ohhhh noooo, face turning red, I admitted VERY sheepishly, "Ssssanta Barbarbara." LOL...Then out of embarassment, I had to explain in detail how I sprained my ankle causing us to be behind and getting a late start and blah, blah, blah, blah, blah...oh yes, and the traffic! Oh man, I felt caught, but I didn't lie :) Just humiliating and the best part is it all turned out just perfectly. The doctor had cancellations today and we had an easy time just going right in lickety-split.

Ok, ok, ok, NOW the juicy part! The doctor had a couple interns come in with him to meet me and I always get to hear his glowing reports in the hall before they arrive. He reports to them, "Come in here. You have to meet her. It's truly remarkable where she was and where she is now." He explains to them my complete liver and kidney failure and brain involvement where I was in a coma for at least a week, how my bilirubin was like 28 or something off the charts, and how I've bounced back from this near death experience. But here's the interesting part. He shared with them and tells me how he is so amazed at how bad off I was. He shared with me that when he would come to the ICU to check on me and manage my care, the ICU doctors would stop him and advise him to give up, to do no more for me and let me die! They had no hope and thought it best to just end it by not intervening anymore! Can you believe that? That's the disturbing part. The amazing part is that this devout orthodox Jewish man, my amazing Dr. Gary Schiller, boldy retorted, "I will do everything I can and let God decide." I know that God would have His say either way, but I am so thankful to have had the best doctor who also had the wisdom to know how to make those kinds of decisions.

I had to ask him if the ICU doctors REALLY said such a thing, and he said, "OH yes! It's really a myth, you know when you hear a guy say, 'they kept my grandma alive against our will?' Well, those are exceptions to the rule in ICU...most ICU doctor's philosophy is to just end it as quickly as possible, get it over with." Now looking back, I see why he wanted to keep me out of the ICU and why when I was there, he was trying to get me out as soon as he could! When I told Mike all of this news in the car on the way out, Mike asked, "Then why did ICU want to keep you so badly?" If you were reading my blog back then and recall, I was better enough to get back to the Bone Marrow Transplant floor, and wanting to be released, my doctor (Schiller) wanted me back there, but the ICU doc was arguing with me about it, almost to the point of tears (the doctor not me!) pleading with me to stay with, "what can they do for you up there that's so great that we can't do here?" It was really weird! Upon that display, I was like, get me out of here!!! She even came up to my floor in the middle of the night to "check" on me and the nurse put her in her place. Go back down to your den woman! (My thoughts.)

Anyway, since I was in a coma I had no idea how really close to death I was. I asked Mike tonight at dinner if he thought I was going to die. He said, "I just knew you weren't, like God told me. Without that I couldn't have gotten through it." Everyone thought I was going to die. Even Dr. Schiller wasn't so sure, telling Mike, "I've done all I can, now it's up to God."

On a lighter note, after our long journey today, and getting to our guest house, I had the most delightful visit with Amy, Carisa's Muslim sister who lives upstairs with her husband Igbal and 2 girls. They have a playdate every Friday so there were a few kids Adam and Trevor enjoyed playing with while the moms and I had a great time interacting over the amazing Indian and Bangladeshian food that the ladies had made. I love cooking ethnic food but haven't adventured into this area, so this foodie learned a lot today from some extraordinarily beautiful women in their gorgeous traditional clothing. One woman made "Chaklay" (not sure how to spell it), but it's really cool rice flour, chile powder, salt, pepper dough you put through this "Chaklay" maker that is a brass cylinder with disks (kind of like a pasta maker would have), then you fry it up real crispy. It is like a snack food you would get in a bag, but homemade and quite addicting. I wish I'd taken a photo of the maker and the dish. I love how you can get the real food that people eat in their homeland from what they cook very simply in their own home. You just can't find that in any ethnic restaurant--it's very special.

I rested from 7-8 pm and then Mike, the boys and I headed out to eat at our favorite Torrance eatery, Hanks Pizza, Deli & Restaurant. This place has been around since I was a kid and beyond that! I have been going here since I was Adam's age, maybe younger. And in all these years I've only ever ordered 1 thing...Hank's Vegetarian Pizza - it is the BEST pizza ever! What sets it apart is the eggplant and artichoke on it and the crust and the sauce and the cheese....heavenly! Well, tonight folks, because I'm living(!) I went big and we ordered the cannoli too! Now I understand, "Leave the gun, take the cannoli." Mmm mmm! Boy, I had no idea! Can you believe this was Mike's and my very first cannoli? I only learned what cannoli's were after watching Mario Batalli make this delicacy in Chefography (a new favorite show of mine). It didn't stop there folks, no! We were celebrating living again, so we went for it and got a slice of cheesecake, albeit small and split into four (I told a jokingly frowning Adam, this is a cheesecake petit-four!) But the owner graciously decked it out with fresh blackberries and blueberries just like the old days...it was fabulous! Nothing has changed about this place, the food, the people, the atmosphere, the classic Italian music and Frank Sinatra tunes, even the prices!!! Great prices! If you are in the Torrance area you must stop in at Hank's Pizza for a wonderful dining experience.
Now you've gotten all the juicy details from dog gymnasticsc to near death to amazing cannoli's, and can rest until the next episode in my funtastic recovery adventures! I look forward to our next visit, in person or otherwise! Until then, grace and peace be with you... Krista

P.S. Do not fear death, unless you don't know the Lord Jesus Christ...but if you do, you have NOTHING to fear. Is Jesus pulling on your heart strings today? Email me if you'd like to talk about it with someone who cares at kristaenglish at gmail dot com

Job 14:5

Man's days are determined;
you have decreed the number of his months
and have set limits he cannot exceed.

Psalm 39:3-5

³ My heart grew hot within me,
and as I meditated, the fire burned;
then I spoke with my tongue:

⁴ "Show me, O LORD, my life's end
and the number of my days;
let me know how fleeting is my life.

⁵ You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Each man's life is but a breath.
Selah

Trevor has dubbed this painting, "The Evil Chef" because of his long dubious mustache.

The photo of Headband wearing sunglasses was taken while he was sleeping in the car on the way to UCLA - only angle I could get.

This is the cutest pizza box you ever saw! If one could collect pizza boxes (the smell prevents), this would be the start of it.

Adam & Trevor at the fountain that I used to visit after I'd eaten when I was their age! So glad this tradition remains :)

A Busy July = Fun, Sun and GVHD Symptoms

noreply@blogger.com (Krista or Mike) — Fri, 24 Jul 2009 14:33:00 +0000

Lots of photos to share with you of our busy July! The flowers were a birthday gift from my dear neighbors and I love to capture them in a photo so I can keep them forever!

I just realized it's almost been a whole month since my last post, and so much has happened this month that it really deserves an update. July has proven to be my most active month by far! On July 3, my kids performed in a Broadway songs show then we went to De La Guerra Plaza for a "Tea Party" event. Afterwards we got ice cream which I found out I cannot taste, so why bother - first ice cream I've ever thrown away!

On July 4 we went to a friend's backyard BBQ. I was exhausted afterwards so missed the fireworks show in Goleta, but Mike took the boys for a fun time that night. Then, on July 5, I was still so tired and didn't have much appetite. I didn't eat until the afternoon and that evening, while I sat on the couch, distracted by the computer, Mike gave me two shrimp that became my demise. Within 2 hours my stomach was violently protesting, and I lost so much fluid out the forward and aft that I couldn't sit up any longer and Mike had to rush me to the hospital ER. They pumped me with IV fluids and the meds I needed to stop the severe stomach pain and I was better pretty quickly. I stayed overnight and was able to leave by mid-afternoon the next day. They ruled it food poisoning after determining there were no infections.

On Saturday, the 11th, the wonderful Steffen's had us over for my first birthday breakfast (thank you!) On Sunday, the 12th, my dad and his wife Martha came to visit for my and Adam's birthday. They took us to Paula's Pancake House for my birthday breakfast on Monday. I spent a lot of energy enjoying their visit by cooking, visiting Solvang, going out to eat, shopping, and even golfing (I just drove the cart), and of course there were our birthdays on Monday and Tuesday to celebrate. For Adam's birthday on the 14th, I made a great grilled shrimp and corn salad, topped off with a Royal Velvet cake from Anna's Bakery. Shrimp again. Within 2 hours, I suddenly had the violent gastronomical event happening again and I begged Mike to take me to the ER before it got as bad as last time! It was a good move. Again, I was helped and the next day able to return home in the late afternoon. The doctors asked me if my skin had been flushed when I was getting sick. In fact, it had been noticeably enough that I had mentioned that to Mike...all my skin was pink/red. That is a sign there was a lot of histamine in my blood, an allergy. Ohhhh! So that first incident wasn't food poisoning after all, it was an allergy to shrimp! Even last weekend, after an ice skating party, we went to TGIF's and I, of course, am staying away from shrimp, but almost every meal they have has shrimp. We ordered appetizers, and the nachos had grilled chicken on them. Later I was getting really nauseated in the order of the last 2 ER events, so I think that TGIF's probably grills its shrimp on the same grill as its chicken, causing contamination. When I realized this, I took a benadryl and went to bed - I'd also overdone it going to our ice skating party - I was in bed at 7 PM for the night! The benadryl seemed to work though so no ER for me!

The kids have been having a blast with our weekly writing class with 10 students at our house, golfing, bike riding to the beach with their dad a couple times, birthdays, ice skating, Cinderella rehearsals, and surf camp. Between that and the regular household chores, farm day on Thursdays, and looking for a good dog for our family, I've been quite tired lately. I also have been getting more sun than I probably should which is very difficult living in such a beautiful sunny climate. Getting worn out and too much sun has probably contributed to my GVHD (graft vs. host disease) getting worse. So we upped my dosage of prednisone to suppress my immune system more which I'll be weaning back down over the next several weeks. My doctor is pleased with the progress I've made and, at the last visit, admitted, "maybe we've been a little too hard on you," meaning he keeps pushing to cut down my meds and also expects me to not have all this fatigue and GVHD.

The wierd thing is at the same time I was having those stomach problems, which could have been GVHD-related, but we think is a shrimp allergy, my friend Terry who got his transplant at the same time as me, was also having the same stomach ailment symptoms I was having! His was a gallstone blockage and he's at UCLA having his gallbladder removed, bummer! At my last visit to UCLA, we were able to visit Terry and Monica as well as Elizabeth from Santa Barbara who is there for her stem cell transplant right now too. It was great seeing so many old faces from the nurses to the transplant coordinators, to the nutritionist who encouraged me to keep eating melty cheese, ha! There was a survivor's celebration which we were so late for we missed meeting my doctor's wife and son and hearing the speaker and all the stories. The speaker is an artist who published a book where he drew a picture everyday after his stem cell transplant. He works in Hollywood doing artwork for t.v. shows and movies and is very talented. Testing out my stomach on the way home, we stopped at Cheesecake Factory for a delicious meal that would have put me under if my problem had been gallstones! That was one full day and it had only been 1 day since I had been discharged from the hospital for the stomach ailment!

A few friends are taking me out to dinner tonight for my birthday at Fresco Cafe, one of my favorite local spots. Aren't they sweet? Tomorrow we're going to spend time with Trevor and possibly go looking for a dog some more. Sunday we have our friends from China visiting for church and lunch. And next week I'm going to try to get some good rest time in. My next doctor appt. at UCLA isn't until mid-August. I've been burning out on doctors visits lately so I'm glad for the break. I probably should get my blood work done next week and check in with my local oncologist just to be safe though.

I hope you all have been enjoying your July and I look forward to hearing from you soon! And thank you dear friends for continuing to pray for me. I'm tired and weak and your prayers are what keep me lifted up to win the battle before me.

Exodus 17:11-12

As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses' hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset.

Correlations from Les Mis - Must-Read!

noreply@blogger.com (Krista or Mike) — Wed, 01 Jul 2009 21:11:00 +0000

It has been way too long since Mike and I had been on a real date. Long car rides to and from UCLA are great, but don't really count as a date night! But last night, we were blessed to see Les Miserables at Solvang's Theaterfest, a quaint outdoor theater we used to go to often when we lived in Buellton. Many thanks to Marilyn Seibert for not only feeding and watching my kids, but cleaning my floors and dusting too!

We saw Les Mis on Broadway 11 years ago, and it became my very favorite musical. While it impacted me then because of the powerful themes of unconditional love and redemption, grace vs. works, justice vs. forgiveness, and more, it hit me in new ways now because of all I've been through and how much more I could relate with the characters of Fontine and Jean Valjean!

When Fontine is dying in the hospital, she is lying on her bed and singing a song to Cosette who is not there. She is obviously hallucinating and the nurse and Jean Valjean know that she doesn't have long to live. Before, I just thought this was just a technique to show she's losing it and is about to die, but now I realize how accurate that portrayal is of someone whose body is shutting down. The very thing happened to me as I read over my blog and learn about what happened while I was "losing it" There was a time I was comatose, for lack of a better word, and just last week did I read up on what had happened. My liver had failed, my kidneys had failed, and the ammonia buildup in the bloodstream affects the brain, causing you to hallucinate. Like Fontine, I also "saw" my children and reached out to them and other "visitors" I thought I could see in the hall, crying because they were passing by without stopping or responding. By the way, there wasn't even a window in the door or the room so obviously I was hallucinating...but it was SO real, absolutely clearly real! So when I saw Fontine behaving just as I had been just a few months ago (!) I found myself bawling because of how thankful I am to be here, alive, watching my very favorite musical so relativey soon after my trauma. By the way, I didn't sing any songs on my deathbed, just the hallucinating part, ha...

Another moment for me happened at the end when Jean Valjean is at the end of his life. After all the good he'd done, saving and protecting Cosette and raising her "to the light," and showing the same unconditional love and grace he'd been shown to the officer who sought him his whole life when he could have killed him, and saving Maris anonymously to bring him to Cosette, we find that he still has not forgiven himself. Maris figures out that J.Valjean was the one to save him and calls him a saint for doing so, while Jean Valjean cries as if it is not true. I think we all go through that from time to time (especially if we've ever been through a life-altering experience). Going through leukemia and the harsh experience of a stem-cell transplant, close to dying a few times, and blogging about it, causes others to look at you like you are special...I mean, I would receive cards and emails daily that spoke so highly of me that it was painfully touching...I would cry as intensely as Jean Valjean was in that scene, "No, no, no, it's not true, I've done terrible things, I'm very selfish, I don't deserve this!" These emotions can be very powerful, but it's an itneresting dichotomy. Yes, you can do wonderful things in the Spirit when you abide in Him, but at the same time your fleshy desires fight within you like pride - the desire to be first, to be best, to be perfect, etc...for some the sin might be more overt or more hidden like lust, lying, gossip or addiction. Even if you don't commit overt sins, the temptations are still there which can be all Satan needs to bring you down emotionally. If he can cripple you in the mind, making you ineffective for the kingdom of God, you can bet he'll try to do it any chance gets. That's why it is so important to be in His Word, the Bible, praying to God unceasingly, and fellowshipping with others who would encourage you in the Lord.

There is so much more I could say about this story. If you haven't seen it I highly recommend it next time it is playing in town. If you are local, it will be at Solvang Theaterfest through mid-July. Tickets are still available.

Galatians 5:13-18

You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature; rather, serve one another in love. The entire law is summed up in a single command: "Love your neighbor as yourself." If you keep on biting and devouring each other, watch out or you will be destroyed by each other.

So I say, live by the Spirit, and you will not gratify the desires of the sinful nature. For the sinful nature desires what is contrary to the Spirit, and the Spirit what is contrary to the sinful nature. They are in conflict with each other, so that you do not do what you want. But if you are led by the Spirit, you are not under law.

Amazing Day at UCLA

noreply@blogger.com (Krista or Mike) — Sat, 27 Jun 2009 14:58:00 +0000

We left early hoping to beat the traffic surrounding the death of Michael Jackson, and ended up taking extra time ourselves trying to get something to eat on the way. We made great time as traffic wasn't so bad. What we found out is that the news organizations seem to be blowing the picture of reality out of proportion. Traffic was only mildly heavier, but everything was moving and we found out that the L.A. Film Festival was in town which accounts for that. Not to mention summer vacationers abound. We saw no shrines at UCLA and the crowds that had gathered the day before were all gone. I suppose a few people moved over to the Coroner's Office and his home, but watching the news, it appeared that the world had stopped and all were mourning in the streets. Not so - life was actually quite better than normal down there.

In fact, the doctor's office was empty when we arrived, and the phlebotomist took me right in (before my 1 PM appointment!) I went back to the waiting room and in just a few minutes I was called to see the doctor. My appointment to see Dr. Schiller wasn't supposed to be until 2 PM so imagine my surprise! Usually the place is packed and they are running at least an hour behind. One time I had to wait 6 hours to see the doctor!

I shared my symptoms of late - burning tongue, sore mouth, pain and tightness in my throat when I swallow food over the left side, fatigue, muscle stiffness and joint pain, and a bit of a rash. He confirmed that yes, they are all graft-vs.-host disease related. I was bummed to have graft-vs-host of the tongue...that means the immune system is attacking it and destroying the tissue with a loss of taste buds - so that burns where that is located, all around the tip and sides. The good news again is that this mild form of GVHD has an anti-leukemic effect.

When they shared what my CBC (complete blood count) was I thought they must have someone else's record! My hemoglobin is 12.6 (perfectly normal!) and my platelets are 125,000 (150,000 is normal). The platelets had dipped to 87,000 just last week because of my GVHD.

We were all done by 2 PM so we headed over to REI in Santa Monica so I could get a few sun block items - a lightweight, long-sleeved SPF shirt, pair of lightweight SPF pants, an SPF hat with flaps that meet under my chin, a pair of sun gloves, and some 50 SPF sunblock. I'm hoping I'll be able to be out more without fear of burning and increased GVHD symptoms. Lately, since I've been more active, I've been getting more sun (just driving and standing outside 10 min. here and there), but my sunscreen was allowing too much sun in for my sensitive skin and consequently I've been having more GVHD. I'd like to be able to take the kids to the beach sometime in my sun tent, but was concerned about the reflective UV. Now with head to toe sun block stuff I think I might be able to try an hour.

After REI, I was pretty exhausted and my hip hurt, so we couldn't do any more walking adventures even though I desired to walk the 3rd Street Promenade, hit the newsstand there, go to the Santa Monica Pier and ride the great ferris wheel. Instead, we drove the scenic way home via PCH (Route 1) through Malibu and into Oxnard. On the way through Malibu I decided to see if I could find my great uncle Bill Hoppe's house - a place I'd spent many summers during childhood roaming their property, playing at the creek, and spending time next door at the neighbors' wonderful home, a producer/cameraman who had a daughter my age. We used to play hide and seek in all the amazing cubbies and secret passages in her house, enjoyed playing on the hammock, and riding in the tire swing that hung from a giant oak tree. Sometimes we walked down to Zuma Beach and picked anise all along the way...ahhh the smells of that! At night it was fun to listen to the coyotes having their howling parties. So, just like the other childhood cravings, I just wanted to go back and see. It had been MANY years and my Aunt Rosemary died of breast cancer some years ago, but I wanted to show my kids where I used to play for a couple weeks each summer as a child. My great uncle Bill and his son Craig (2nd cousin once removed or something like that) were both home and were willing to welcome us outside. I toured the back of the property where I meandered the creek and headed up the hill to the neighbors. Some things had changed, some remained the same. My neighbor friend no longer lives there, but the kids were excited to learn that the new owner is the producer of the movie Bolt. They had landscaped their yard and put in an iron gate, so the old oak tree no longer had it's tire swing, bummer!

We only stayed 15-20 min. visiting, then headed home. All that activity and sun caused my muscle stiffness and pain to increase so that by the time I got home, had a bite to eat and got a bath to try to lessen the onset, it had turned into a migraine. This morning my migraine and nausea from it are gone, but I still have the stiffness which leads to it so I need to be careful not to do too much today!

This concludes my periodic update, reporting when there is news and not every day! Life is getting busier now that I'm more active so I hope you understand. Also, I enjoy talking with you when I see you! So many people read this blog and don't feel a need to speak to me in person since they know everything that is going on in my life which is a strange by-product of blogging. Another strange thing happens when strangers come up to me who are not readers of the blog, but have heard about me from a mutual friend. I know they are not on the blog when they ask how I'm doing, ha! The funny part is that I sound so ridiculous saying, "Well, thank you. Um, you can read my blog to find out if you'd like, aren't you a subscriber yet?" What has gotten into me? Then I start telling them how I am, and because I'm not practiced in speaking about my condition to new people, I end up saying way too much - yes, the recipient's eyes start glazing over! I have forgotten how to have a normal conversation - the old fashioned way with a simple "I'm fine thank you, and you?"

P.S. In case I don't write sooner, I'll be celebrating my 38th-birthday on July 13! Birthdays always mean more to me after a near-death experience :)

Hebrews 10:25

Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another—and all the more as you see the Day approaching.

No More Driving Mrs. Daisy, I Mean English

noreply@blogger.com (Krista or Mike) — Tue, 23 Jun 2009 03:26:00 +0000

I did it! I drove the car for the first time since December '08! The kids and I were excited about the adventure and the fact that I had good energy this morning. I made us all chicken salad sandwhiches with our leftover chicken, and put together a lunch for Mike. I had planned to surprise him by bringing him lunch to work after dropping the guys off at the golf course which is halfway between the house and his workplace. But as we were leaving Mike pulled up ready to give the boys a ride to their golf class. Adam ran out and told him to "go back to work! Mom's driving us!" I think Adam was trying to protect mom from becoming disappointed which I was because Mike foiled our plans! Instead I sent them on with him so he could go back to work and I could get some more things done during that time.

I did drive though by picking them up at 3 pm even though I was more fatigued than I had been earlier. No problem though - I didn't feel tired driving. Since I was out and about for the first time and since Mike's Drum Shop was having a Zildjian Cymbals show and sale with giveaways and contests from 3-8 pm, we headed to downtown to check it out. I got Adam's birthday gift without him watching and together we picked out an early b-day present of a needed crash cymbal for 50% off - awesome deal! We were one of the first ones there, but it doesn't take but one other person wailing away on those cymbals to send my nerves into a frizzy. It was so loud in the cymbal room, I had to get out of there quickly! After the drive home, I was pretty drained of my remaining energy. So we just put on our La Clase Divertida DVD lesson and let the kids learn los colores.

Now that I am making more progress every week and am much more stable, I am feeling a tug to slow down the blog to bi-weekly updates for you. I don't want you to get bored with the daily activities of our family life when the ups and downs are becoming more modulated. I go to UCLA every 2 weeks right now and will update you when there is anything interesting or specific prayer requests are needed. After that I'll go to monthly reports. I just don't want to cut you diehards off cold-turkey!

Ecclesiastes 3: 1-8

There is a time for everything,
and a season for every activity under heaven:

a time to be born and a time to die,
a time to plant and a time to uproot,

a time to kill and a time to heal,
a time to tear down and a time to build,

a time to weep and a time to laugh,
a time to mourn and a time to dance,

a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

a time to search and a time to give up,
a time to keep and a time to throw away,

a time to tear and a time to mend,
a time to be silent and a time to speak,

a time to love and a time to hate,
a time for war and a time for peace.

Happy Father's Day

noreply@blogger.com (Michael English) — Mon, 22 Jun 2009 07:27:00 +0000

Krista's ups and downs had her down this morning. The "traditional" camping foods didn't agree with her stomach and the excitement of the boys night camping put her over the edge into a migraine last night that continued well into the morning. When the boys and I got home from church, I learned that she had thrown up everything back to last night's dinner -- and then she began to feel better. She thinks it may have been the potato chips that started the stomach shutdown, since those were the first things she consumed. The strange thing is that the antidote to her nauseous feelings is nachos. As she said, "'nachos' is Spanish for 'not feeling sick!'"

For Father's Day, Adam gave me his Cold Stone coupon so I could have a "cool summer". Trevor made me some nice cards. And Krista ordered me a portable gas grill that has been getting rave reviews. It should be here in time for our upcoming date night at the end of the month where we'll be seeing the Les Miserables at Solvang's Theaterfest. Thanks guys for a special day!

The second half of the day, we got to babysit Osage, the Weitzel's German Shepherd. It was Heather's 40th birthday (Happy Birthday, Heather!), and they didn't want to leave the dog alone all day. The boys have such a good time with her, and she is so responsive to them, too. Having her over is helping us to know more of what we want in a dog as well.

Krista was feeling better in the evening. Pray that she'll be all better tomorrow and that she might have a really strong week.

On my bed I remember You;
I think of You through the watches of the night.
Because You are my help,
I sing in the shadow of Your wings.
My soul clings to You;
Your right hand upholds me.
(Psalm 63:6-8)

Father's Day Eve

noreply@blogger.com (Krista or Mike) — Sun, 21 Jun 2009 03:34:00 +0000

Last night I stayed up WAY too late just because my mind would not stop. I rested most of today in that state of almost falling asleep, but never quite taking a nap -- even until 4:00 pm! Finally, I got my shower and cleaned up before 2 of our kids' friends arrived at 5 p.m. for a backyard campout.

I made them typical camping fare of hotdogs, baked beans, salad and potato chips, topping it off with gourmet s'mores -- graham cracker, toasted marshmallow and Nutella (the secret ingredient). Thinking I'd join in the fun, I ate the same meal and now have a headache to go with it. Could be all the noise too. I decided to pull out something that we've not taken out for a couple years -- Speed Stacking. We had a little workshop to show the kids how to do it and they had a great time learning their new skill. Beginners slam the cups a little too hard so it was a little loud for a while. But they got the hang of it by the end. As delighted and enthusiastic as they were with this activity, I can see a cup stacking club being formed in the future!

Now the boys are in the tent and I'm glad they are having so much fun, but golly how to unplug them before long!? Being a girl, and an only child at that, I never knew the sound of fun...it's quite noisy! Pillow fighting, someone might get hurt, yelling into walkie talkies because all you can hear is static...I never knew any of that, hence the headache. Boys, glorious noise!

It's Father's Day and you know what THAT means! Another holiday for me to fall behind. The gift I wanted to get Mike for being the Best Father of the Year was just way too expensive for us right now, but then I found an alternative of the same idea that was only a small fraction of the cost. Unfortunately, I didn't find that option until Friday so he'll be receiving his gift late. Maybe we'll celebrate Father's Day all month since he deserves it so much.

Hope you have a relaxing and enjoyable day tomorrow with the fathers in your life.

Ephesians 1:15-21

For this reason, ever since I heard about your faith in the Lord Jesus and your love for all the saints, I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe. That power is like the working of his mighty strength, which he exerted in Christ when he raised him from the dead and seated him at his right hand in the heavenly realms, far above all rule and authority, power and dominion, and every title that can be given, not only in the present age but also in the one to come.

Thank God for Everyday

noreply@blogger.com (Krista or Mike) — Sat, 20 Jun 2009 05:37:00 +0000

I was going to thank God it's Friday, but that's so cliche and when I stopped to think about it, I can truly say I thank God for everyday. As I suspected, my day started well with an early wake up, ready to go, no pain, good energy to do clutter pickup before my friend came over with her 2-year-old Matthew and her 9-month old German Shepherd, Osage.

Osage was GREAT! I've never met a brighter and sweeter dog than Osage, pronounced 0-sage or o-wise-one. So if for some reason Heather, you can't keep Osage, please put us on top of your list as potential caregiver. As it is, Heather said we could babysit anytime she has to be out of the house for 4-6 hours instead of keeping her in her kennel that long. The dog loved Adam and Trevor, and the kids LOVED her. I think I've heard 4 or 5 times, "When can Osage come back?" or "When are we going to babysit Osage next?" We got to keep Osage for a couple hours after Heather left at lunch to take her daughter out for her birthday. It was so fun to pretend we had a dog and she was the hit of the neighborhood because of how well she listened and how calm she was for only 9-months-old.

I was pretty tired at the end of the day -- no more than usual -- so I had Mike bring home a pizza before the kids' last night at VBS at church. We took them ourselves this evening (every nightthis week Katherine Marton drove them to VBS, while the Steffen Family took them home.) Being the last night, it was with great pleasure that I was able to see the final worship time, drama skit and fabulous video of the children's participation that took place all week. Thank you Katherine and Alyssa & Cory for making the nightly VBS-committment possible for our children.

Thank you readers for all your prayers! My graft-vs-host disease has improved greatly over the last 2 days--the medication took quick effect. You can direct your prayers toward Mike's behalf since it's Father's Day this weekend (and what a father he is!) Pray that he'll have a very special weekend and feel refreshed and encouraged.

Psalm 66:18-20

If I had cherished sin in my heart,
the Lord would not have listened;

but God has surely listened
and heard my voice in prayer.

Praise be to God,
who has not rejected my prayer
or withheld his love from me!

Thursday: Flip-Flops and Important Update on Meals

noreply@blogger.com (Krista or Mike) — Fri, 19 Jun 2009 14:42:00 +0000

This post was done early, 6:45 pm on Thursday, and for some reason the FeedBurner didn't send out to the subscribers - at least I didn't receive a copy in my inbox. So, I'm posting it again to see if it will now deliver to you...

Today when I woke up late at 8 a.m., I felt horrible...achy, swollen inside and out, sharp joint pain in my ankle and knee. It seems like each day it flip flops, wake up early good, wake up late bad, and by mid-day it turns the opposite direction. By 11:00 a.m. I was feeling much more energetic, and the inflammation and pain was gone, while yesterday by lunchtime I was flaring up with the GVHD and feeling exhausted for the rest of the day!

I think that fares well for me tomorrow a.m. then, if we can trust the trend. Having my energy in the morning will be great because my friend Heather is bringing over her adolescent German Shepherd after 9 a.m. Word is out that I am a serious Dog Whisperer-addict, willing to pass on all I've learned from Cesar Millan's techniques in dog psychology to anyone who will listen to me!

So after a late start, we were off to see Dr. Wolliver. I noticed that I was able to move much faster and on 2 feet this time when went to the Cancer Center. Just a few weeks ago, I was only able to be in the wheelchair to go that far, and I was very blah and puffy. Today, the doctor remarked that it was the most he's seen me smile in a while. He said that even though I have chronic GVHD, I'm able to manage it on very low doses of immuno-suppressants which is great. He's seen much worse cases. In fact he mentioned that one patient of his, back in the late 1990's who had a transplant for his leukemia, stopped taking his meds when he felt better, claiming he didn't need them anymore even though his doctors warned him. The doctor sadly reported, "the last 12 years for this guy has been hell." I guess the GVHD attacked with a vengeance and it's been hard to manage. I proudly admitted to being a very obedient patient, no stupidity here! I might complain a little, but I'll gladly take my medicine and listen to my doctors...seeing the progress I'm making now makes me trust them all the more. It doesn't seem as random as it once did to me. Funny that I would think these top-notch doctors are guessing at what to do or just treating everyone the same...they know what works and what doesn't. You just get a little delirious and/or paranoid when you suffer intensely for long periods. What people put up with to take care of me! Sorry people! You know who you are :)

Dr. Wolliver also reported to me that they are working on ways to get the GVLD-effect without the GVHD. GVLD is graft-vs-leukemia-disease which is no disease at all, but an efficient way of staying in long-term remission. I didn't realize how important it is to get some GVHD, fairly mild like I have it (nonetheless annoying). He said that there is a much higher leukemia relapse rate in folks who never have GVHD. Just goes to show that God knows what He's doing.

Mike was able to take me to Fairview Gardens for our CSA share pick up, and what a beautiful day. It's so fulfilling to pick your very own local, just-picked, organic veggies and fruit...the sights, the smells, the sounds of the giggles from children climbing the old Mulberry tree while you pick. If you are local to Goleta or Santa Barbara, get on over to Fairview Gardens and sign up for the summer harvest...there are still spots remaining and they will prorate the season for you!

After the farm, it was off to Staples. I stayed in the car, but the best part was running into Aaron Swaney and getting to chat for a while! Love the Swaneys and all their extended family and hope to get to spend more time with them in the future. They are such a great example of godly Christians who are "in the world, but are not of the world."

I've got way too much false energy from this steroid, even though it's only at 10 mg! I'm sensitive to these things. I say false energy because it has me going a mile a minute, non-stop talking, but I also feel slightly exhausted too. So I think I have all this energy, but when I go to do something I'm feeling too tired - a strange sensation which doesn't help my tendency to be over-ambitious!

Oh, one more thing I need to give those of you in our homeschool community a heads-up on! If you were bringing us meals, or are scheduled to, please redirect your love and energy to Stacy and Fred Zamora. Contact Linda Berkley through the Homesteader email list to sign up for a date. We are doing much better now that I'm more mobile and able to help plan ahead better. And thank you all for your amazing support! We couldn't have done this without you!

2 Corinthians 9:11-13

You will be made rich in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.

This service that you perform is not only supplying the needs of God's people but is also overflowing in many expressions of thanks to God. Because of the service by which you have proved yourselves, men will praise God for the obedience that accompanies your confession of the gospel of Christ, and for your generosity in sharing with them and with everyone else.

I've Got Title Block! Blank! Nothing! Nada!

noreply@blogger.com (Krista or Mike) — Thu, 18 Jun 2009 06:01:00 +0000

I woke up early this morning at 6:15 and got a shower which left me with some quiet time to just sit and pray before the kids woke up. I felt better this morning and had more energy than usual, even enjoying my first cup of coffee since December. Darlee, that Starbuck's Holiday Blend you got me still tastes great after all this time (stored in the freezer)...thanks!

By lunchtime, my chronic GVHD started to flare up with extreme fatigue and itchy dry eyes and chin. The doctor emailed me right back this morning instructing me to go back up to 50 mg of cyclosporine and double my prednisone to 10 mg, just as I suspected. The prednisone is to get rid of the rash quickly and the cyclosporine is to suppress the immune system to get the GVHD under control. I need to report back in 2 days to let him know if it improves. And Thursday I get to see Dr. Wolliver, my local oncologist for a mid-month check-up.

The kids did an outstanding job today with great attitudes. Adam tackled his checklist like a champ and even spent some personal time with God reading his Bible on his bed without being "told," while Trevor was able to turn himself around quickly from his desire to argue/disagree/or disobey. A sweet change from yesterday. He also did his checklist without prompting, yay! Someday they will read this blog, so I'm tooting their horn from time to time because they are such great kids after all.

Speaking of my kids, Trevor is a funny one. Today I was talking about dog breeds and he asked me, "How do you know?" which, at first thought, sounded quite rude. I responded, "What do you mean? Do you believe me? Trevor, do you trust me? Do you like your Mama?" (Ok, I was really thinking the kid did not respect me for a moment there - like I must not know a thing.) He says he believes me, trusts me and likes me, but he just wants to know how I know. He's being literal here...he really wants to know how I come into this fascinating information, and where can he learn that? He is a curious little bug at 7 1/2 years old!

I hope you all are growing stronger in your walk with the Lord and not too busy to spend some quiet time reflecting on all He's done in your life. If you don't have a relationship with the Lord or you are living for yourself, don't waste another day! Turn to Jesus, and meet the One who loves you so much that He was willing to die on a cross for your sin, the sin you inherited from your forefathers all the way back to Adam and Eve! Life is too short not to get to know your Creator before you meet Him face-to-face. And, getting to know Him now will make all the difference when the time comes for you to "really" need Him, I promise you. The hurried, rushed life so many of us lead will never satisfy the longings in your heart. Turn to the Lord Jesus because only He can meet that peace and true joy which you seek.

Psalm 119:36-38

Turn my heart toward your statutes
and not toward selfish gain.

Turn my eyes away from worthless things;
preserve my life according to your word.

Fulfill your promise to your servant,
so that you may be feared.