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.

ABC News Interview: XMRV and CFS link

What's a retrovirus? Why is XMRV considered a "game changer" for Chronic Fatigue Syndrome? Why is the XMRV / CFS link significant? Simple, clear explanations at http://abcnews.go.com/video/playerIndex?id=8864348.

Today's been another "hit by a bus" kind of day for me. Don't know if it's a reaction to yesterday's IVIG or something else? About 11 this morning I posted a facebook updates stating, "Rough CFS / XAND day. Finally out of bed, but not sure for how long. Nausious, lots of pain, sound/light sensitive, everything hurts and feels heavy and my body just wants to sleep. Was hoping to go pick up new glasses today, but doesn't look like I'll be up to driving anywhere. Going to pile my kiddos in bed with me and try to get some school reading and snuggling in."

Have slept a good chunk of the afternoon since then. Friend came to pick up our daughter for a while, little guy is currently sleeping and oldest is happily reading, so I'm going to try to get my brain in gear enough to gather paperwork needed for tomorrow's doctor's appointment at Incline.

Yesterday's IVIG was #11, so only one more scheduled. Still working with my doctors to try to figure out if we will go forward with another round of 12 IVs right away, skip them (at least for now) and go immediately onto an antiviral drug instead, start on anti-inflamitories, or something else all together.

Sweetest Day

My husband and I met 19 years ago this coming Tuesday, Oct. 20. That year it was a Saturday. I later learned that it had been "Sweetest Day" and I thought it was amazingly "sweet" that this is the date we would remember as the day we met. :) My curriosity drove me to learn the history behind this holiday I had never even heard of before, and I found it was rooted in the desire to show encouragement to orphans and shut-ins, both groups near and dear to my heart. There are probably better links out there, but here's one I could quickly find this morning:
http://www.theholidayspot.com/sweetest_day/history.htm

Rick, thank you for investing the past 19 years of your life into mine. I love you always!

Checking In

IVIG #10 was blessedly uneventful. It took several hours and my nurse commented on how, "This process really beats you up!" as she observed the dramatic change from the "bouncy" (her description based on my generally smiling personality, not my physical feeling) happy me, to the girl who couldn't even walk across the room unaided, within 20 minutes of the start of the IV. An hour into it I was so miserable I was actually moved to the only bed in the infusion room because I didn't have the strength to "sit up" in the recliner anymore.

But thankfully I had no dramatic reactions afterwards, like I did after the 9th infusion, so it looks like adding zertec to the mix was helpful afterall. I'll have my 11th infusion two days from now, then see one of my specalists, Dr. Peterson next Tuesday. It has yet to be decided if I will continue with another round of infusions after #12 or not. I have very mixed emotions about what I hope the final decision will be. It has been a hard go, but if we are going to go for another 12, I really would rather just keep moving forward now, with my existing PICC line and established schedule, rather than having to try to start over sometime down the road. We'll see what the experts say...

I still haven't really recoved from our RV trip (or from the trip to Stanford before that) and it took more out of me that I thought it had in the beginning. I'm hurting a LOT the past couple of weeks, and while last Monday was amazing good (typically the day after an infusion is really bad for me), I'm not seeing a huge bounce toward feeling better toward the end of the week these past two weeks, as I had been seeing in prior weeks. Travel just takes a whole lot more out of me even than I realize when I first get home.

Prior to the trip, I would typically have a very hard Monday, so-so Tuesday and Wednesday, then often start feeling fairly decent by Thursday or Friday and on through the weekend until my next Sunday afternoon IV. The past two weeks, Thursdays have actually been my hardest days rather than the day I start noting improvement, and today I'm still really dragging. It is so discouraging to feel that I can never get "caught up" or "rested up" enough to get to a level playing field. I have been fighting a fever all week and just plain feel rotten!

My doctor in Stanford wants me to come back there for bloodwork next week and that simply isn't possible. I cannot even begin to imagine how I could cope with another trip right now and fear it would land me in bed hard for a long time to come. It's crazy that Dr. Montoya in Stanford tells me it is critical to "reduce stress" (including physical, emotional, mental...) then my insurance dictates that he's the only specalist they will cover and it takes a 3 or 4 day trip for me to see him (1 to travel, 1 to sleep once I get there, 1 for the appointment itself, 1 to travel home again), not to mention the physical aftermath of trying to recover from the trip. The whole insurance situation and denial of coverage for my local specalist itself is pure stress! RVing was a much more gentle option for me than a standard car trip, but as I'm finding out the hard way still two weeks later, still not the answer I had hoped it would be.