Friday Joy :)

Been a long week with sick kids and a sort-of-fighting-something-sickish Mommy (nothing new there, just an extra layer added to my normal). Daddy's sleeping on the couch to try to stay away from all the contagious germs floating about our home. Had some success with homeschooling, but mostly just had a hybernation week here, with the 3-year-old having had enough of it all and creating ways to get himself in trouble yesterday.

Exactly how many different kinds of messes can one little boy make in any given 20 minutes? The morning started with a large tupperward bowl of raw rice poured through the dirty colandar all over the kitchen floor, then mixed with half-eaten smuggled candy, markers all over the schoolroom door, and the entire toybox turned on end and scattered across the house, all within a 15-20 minute timeframe. The day only went downhill from there...

I'm so glad it's almost the weekend. I'm ready for a fresh start. It's weeks like this that make me thankful for our infertility journey before motherhood, because if we hadn't fought and prayed so hard for these little miracles, these are the kinds of days that could otherwise lead me to forget what a true miracle and blessing it is to have them in our lives!

It's not quite the weekend yet, but today I choose to focus on the fact that This is the day that the LORD has made. I will rejoice and be glad in it!

There are many things I want to blog about, like how fun it is to watch our daughter asking for various things for Christmas when we already know that what she will find under the tree will far surpass any of those items she thinks she wants so badly. (Thanks to our local toy store's phone call earlier this week that we had won a very special prize there, something that would be far outside our typical Christmas gift budget.) She feels sure that these things she's asking for will make her little heart so happy and cannot begin to imagine that there is something far better in store for her. Gives me a glimps of how God must feel as we beg and pleed for the things we think will gratify, and He seems to sit back and "do nothing" when in reality his patient smile hides the quiet joy of all He knows He has planned for us, plans for our good, far beyond all we could ask or imagine.

There are about 600 unanswered emails currently sitting in my inbox, many half-written blog topics floating around in my head, a sale I should be promoting for my mineral makeup business, a new catalog about to launch for Gurrlie Girl jewelry, and so much more "stuff" that calls to distract my heart, but today I'm going to turn off the computer, walk away, take a shower (thanks to my hubby plastic wrapping my PICC line before he left for work), then just enjoy my kids! Fevers are mostly broken, we seem to be off to a better start emotionally and relationally all around, and I have a pile of jello boxes waiting to be built into a model of a Roman arch. Motherhood has it's very hard days, but thanks to infertility, I don't want to miss a single sticky day of this journey!

Since I'm not up to answering emails, a quick shoutout to my friend Jill here: There's absolutely nothing "lazy" about sleeping late, then working late. That's how my body typically works best and my creative juices best flow too! The fact that you can work enough to actually financially support yourself while living with chronic illness is a HUGE blessing, so I'm proud of you for what you can do and say "go with the flow" about how you get it done! {{{hug}}}

Chronic Fatigue Syndrome Advisory Committee

Both days of CFSAC meetings from last month, where both Dr. Daniel Peterson and Annette Whittemore testified, are now available for few view in full:

Day one (Thursday, Oct. 29, 2009) can be viewed at http://videocast.nih.gov/Summary.asp?File=15408 (6 hours, 43 minutes playtime)

Day two (Friday, Oct. 30, 2009) is found at http://videocast.nih.gov/Summary.asp?File=15409 (5 hours, 15 minutes)

Dr. Peterson XMRV Testimony

Yesterday my doctor (the local one whom I consider to be my personal specalist, even though insurance won't cover him) was in Washington, D.C. to testify about XMRV before The Chronic Fatigue Syndrome Advisory Committee (CFSAC), the advisory board who provides recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Dept. of Health and Human Services! You can watch and listen to portions of his amazing testimony below or find out more information from the US Department of Health and Human Services.

For those new to my blog and wondering what I'm talking about, here are some quotes taken directly from the Whittemore Peterson Institute's website on XMRV:

The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response which result in chronic immune activation and immune deficiency.

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others.

3 year old funny

Rick called from Sam's Club to see if I needed him to pick up anything on his way home from work. Threw the question out to the kids, "Can anyone think of anything we need Daddy to get from Sam's?"

Little J. answers very matter-of-factly, "Monkey food, in case a monkey comes here in the next few days."

Hubby brought home a bunch of bananas for our Silly Little Monkey (who is dressing up as Ted, "The Man in the Yellow Hat" from Currious George for Nevada Day (Oct. 31). :D

Half Way on IVIG

Yesterday was IVIG #12. I've been taking Zertec daily for nearly 2 weeks now, and had Benadryl and Fluids before the infusion, oxygen during, and additional Benadryl 4 hours in. It went well with no significant reactions. (I had started getting the tight checst about 4 hours after first benadryl dose, even with the O2 tank turned up to a 6, so that's why the double benadryl.) I still was there for 5 hours, but the infusion room was quiet and peaceful (last week had been noisy and hectic and I came home exhausted just from all the stimulation!) so I rested and read and just sought peace in the stillness. I came home, took more benadryl, and slept peacefully.

Woke up sore and stiff today and have never shaken the pain and sore throat all day, but not feeling "hit by a truck" as I have many Mondays, just heavy and sluggish and foggy. I had a really hard cry, the kind that comes from deep grief and shakes your whole body, yesterday morning before church. It was so needed and felt cleansing. I was able to be honest with Rick about all the ugly things I'm feeling about this whole nasty illness and the frustrating process of trying to get better. We are thankful that we have medical approval to immediately move forward with our next 12 infusions, but it also feels like hitting a wall - I've been counting 12 weeks since day 1, then 12 weeks gets here and there's now still 12 weeks ahead.

I don't say it enough, but I want the world to know that I have been blessed with such an absolutely amazing husband and I thank God for Him daily - I certainly don't deserve him and I'm thankful that he knows and understands me so deeply. For those going through chronic illness alone or with a spouse who is not understanding or believing, my heart and prayers go out to you. The Lord is definately my strength, the answer to those questions people ask about "I don't know how you guys get through all this." But second to God, my husband is the most amazing support I could ever ask for. We have moment of frustration and no relationship is perfect, but I am blessed beyond measure!

We went to Chevey's for lunch between church and my infusion yesterday. Their chips and salsa are my ultimate "comfort food". After hardly being able to hold in tears all morning since 5:30, 3 bowls of salsa got enough endorphins going that I wasn't teary again until late this afternoon. I also had a lot of time to pray and reflect during the quiet hours of infusion yesterday and being still before God, getting my head and heart back into His Word, has probably been the most healing of all.

What's In A Smile

I subscribe to daily encouragement emails from Rest Ministries. I didn't write this one, but reading Fiona Burrows' words sure felt like they could have come from my pen. Rather than trying to recapture the concepts in my own words, I forward her thoughts along to share my heart. The following is reprinted with permission of Rest Ministries, Inc. in accordance with their reprint guidelines; do not reprint without permission.

Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Savior. The Sovereign LORD is my strength." (Habakkuk 3:17-19 NIV)

People often comment about my smile. I seem to smile a lot and that's often what people notice most about me. A lady I met when travelling some years ago, said she thought I smiled so much, I must even smile in my sleep!

Smiling seems to come naturally to me, but I know too, that I sometimes smile because I am nervous, insecure, or even if I can't remember someone's name. So sometimes its like a mask.

When people find out that I live with chronic pain, they sometimes say about how they never guessed because they see me smiling. Some people even ask how I can smile when I am putting up with such pain. They say I don't look like I'm in pain.

Whilst I might continue to smile, there are many days when I don't feel I have much to smile about. Things I can't do anymore, things that just seem so difficult. There may be lots of things going on in my life that would make me feel I don't want to smile – but I still have an overwhelming reason to smile.

God gives me a reason to smile – a reason to feel joyful, even in the face of pain – He is the one in control of my life. He has promised to never ask me to go though more than I can bear and promised to always be there beside me, no matter what I am going through.

My face can be the first thing people notice about me. I want my life and my face, to greet them with something that reflects the hope I have, even in the midst of my pain.

Prayer: Father God, may we find a reason to smile today, even in the midst of sickness or pain, because of the hope we have in You. Amen

ABOUT THE AUTHOR
Fiona Burrows lives in Melbourne, Australia. She is thankful for the difference God makes in her life as she lives with chronic pain. She enjoys finding time for writing, travel and photography.
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This daily devotional is compliments of Rest Ministries, serving people who live with chronic illness or pain. Copyright 1998-2009

Rest Ministries, Inc.
http://www.restministries.org
PO Box 502928, San Diego, CA 92150
toll-free 1-888-751-REST (7378)

Makes My Kids Laugh

This is currently their favorite YouTube. They simply cannot watch it enough.