Saturday, July 31, 2010

Birthday Joy

If by some Infinite Design that far exceeds my cloudy, limited understanding, that "great cloud of witnesses" that surrounds us includes the children who have proceeded us to Heaven, I think my babies must delight in my overflowing joy today.

Noel Alexis, our first (who would be 15 next month!) was our "minister of needs". Joel Samuel reminded us that the Lord would redeem/repay the years the locusts had eaten. He was asked of the Lord and we eagerly await reunion. Hannah Rose, our beautiful daughter who did not get to "bloom this side of the fence" was due just a year before her still-earth-bound sister, Princess R, was born. I look at one and can't help think of the other, but while the tears still occasionally come, my heart more and more delights in the unique beauty of each daughter and I can be thankful for my joy in parenting R and in Hannah's joy in daily seeing our perfect Father face-to-face.

I'm 38 today, 2 weeks out from our 18th wedding anniversary that basically was the beginning our of journey to parenthood (we started actively TTC by November). My yet-earth-bound miracles are 10 1/2, 7 1/2, 4 1/2. God truly has redeemed those broken, bitter years. My amazing husband and these three precious joy-bringers greeted me with birthday singing and gifts and (most treasured of all) handmade birthday cards before I was even out of bed this morning. My heart overflows with blessings!

I cannot mark any significant landmark without my heart and mind flying, at least for an instant, to those who are not here to share the day. I will not pretend that the tears of sorrow in parting do not still occasionally flow. But if they can see me, I think they are joyfully thanking the Father right alongside me for the healing He has worked in my heart! God is good, all the time. Praise His holy Name!!!

Friday, July 30, 2010

17-years ago CFS

17 years after this documentary was made, little has changed politically regarding Chronic Fatigue Syndrome.

Monday, July 26, 2010

More on XMRV

I haven't been keeping friends very well updated on XMRV news. In part I feel discouraged. While the National Institute of Health (NIH) and Food and Drug Administration (FDA) have confirmed the findings of Whittemore Peterson Institute (WPI) as published last October, the Centers for Disease Control (CDC) has come out with a very public statement that they were unable to find XMRV at all. The NIH/FDA paper not only confirms the original findings, but strengthen them, but the Department of Health and Human Services (HHS) made the ultimate decision to hold up the official publication of their study even after it had passed peer review and was accepted for publication, a very unusual move.

Our government has ordered the withholding of the paper by both NIH and FDA but allowed the opposing CDC publication. *sigh* Now, honestly, the CDC has over 20 years of track record of doing everything they can to discredit Chronic Fatigue Syndrome as a real, physical illness, so their newest publication and the suppression of opposing findings shouldn't surprise me, but it does disappoint me deeply. For a great time line clearly explaining all the back story check out CFS Central's A Commotion in the Blood: Timeline & Bloodline where you will find a very simple unfolding of all that's happened over the years, presented in a wonderfully understandable time line that will simply make your heart sick!

This is why it's so very important to me that WPI be able to continue their work. This is why it's my goal to raise $500 before the end of August so that I can attend their "I Hope You Dance" fundraiser gala. If our government is willing to endanger the general population by suppressing valid scientific findings, then private research is imperative! (I would so greatly appreciate it if you would consider making a small contribution through my ChipIn link, or you can paypal directly to jsaake AT yahoo DOT com with WPI in the subject line if you would like to help fulfill my birthday wish to be able to purchase these tickets.)

On a personal front, I'm coping with ongoing medical mysteries within my body. I've had classic symptoms of gal stones off and on for about 3 years, with a lot of problems the past few months. My ultrasound last week was "normal and unremarkable" so we are awaiting an HIDA scan (but the hospital is currently backlogged by an entire week). Was thinking I might end up having surgery before my birthday (this coming weekend) but at this point, unless we get to the point of medical crisis (we were almost there last week but symptoms are currently somewhat improved) I won't even have the scan to determine our next step until at least next Monday. In the midst of it all, my dearly beloved primary care physician is out of town for a solid 3 weeks, so we've been trying to run this all through the support staff in her office.

Next week I also see a dermatologist to evaluate possible skin cancer. I also have a referral to a counselor just to talk about how to cope with all this, but I haven't had the energy to even make that appointment yet. It's something I've been avoiding because I feel like I'm living at doctor's offices these days and I'm just too exhausted to take on the emotional process of getting started with yet another "project," (in this case, my emotional and mental health) though I know it's something I need to make a priority and just do. Would love to get the tummy issues resolved so I have the time and energy to focus on other things.

On the fun side, our 7-year-old has now lost all 4 front teeth and has an adorable hole right in the middle of her smile. The 4th came out last Wednesday.  On Saturday our 10-year-old showed me he had a wiggly tooth too, so I reached out to gently feel it and literally pushed it right out! He can now tell his friends that his mom knocked his (9th) tooth out. :P Our poor little 4-year-old is feeling very left out of the whole tooth-loosing experience at the moment, but his time will come. :) We have all enjoyed our first week of "summer vacation" (tummy pain and nausea aside) but are actually already looking forward to starting Exploration to the 1850s and Kindergarten again by the end of August.

Wednesday, July 21, 2010

Can You Help?

Thank you so much for helping me raise nearly $500 last year to attend the Whittemore Peterson Institute (WPI)'s "I Hope You Dance" fundraiser gala!!! It's that time of year again and with the amazing research advances made by WPI this past year, I'm more anxious than ever to help advance research to find a cure for XMRV/CFS.

Would you please help me in any way you can? Every dollar counts! My goal is $500, the cost of two tickets to attend the fundraising gala, but if I don't make that goal I will forward every dollar raised here directly on to WPI to further their research efforts. I cannot proclaim loudly enough just what a blessing and answer to prayer WPI has already been to me. I am honored to have this small way to "give back" and help provide hope to the potential 1 in 14 who currently carry the third known infectious human retrovirus (same family as HIV), many without even knowing until they face a health crisis and trigger this nasty bug into activation.

Please let me know if you have any questions. :)

Friday, July 16, 2010


Our homeschooling year is finally finished! It's been a great program but due to all my IVIG treatments and medical travel and so forth, there were many weeks when I was able to teach only a few hours in an entire week, so we took over 12 months to finish this one school year. I am so proud of these kids for persevering and finishing well! Thank you, Lord, for the blessing of spending every day with the amazing miracles you have blessed us with and for giving us the joy of learning together.

In case I haven't mentioned it recently, if you are ever looking for an amazing school curriculium, I can't say enough good things about My Father's World. If even this chronically ill mom of three can provide a well-rounded education to my children because of the organization and lay-out of this product, I highly recommend it as a great resource for anyone wondering if they can actually make homeschooling work. :)

Friday, July 2, 2010

Great Gain

I've gained weight the past year and a half. A lot of weight.  I was asked three times last week if I was pregnant because I'm carrying most of that weight right out front in my belly.  I had a hysterectomy, then did IVIG and there is no doubt that my hormones are way out of balance. I weight more than 50 pounds more today than I did when I was pregnant with our daughter eight years ago. About 40 of those pounds have been packed on the past 20 months.

I am frustrated. I don't like my body. I don't like getting dressed. I dislike getting undressed even more.  I have stacks of clothes I can't get into, some now 3 or 4 sizes too small, that I've been stashing away for when I can get the pound off.

Today I'm choosing a new attitude. Yes, I would still like to shed some weight, for health, for self-esteem, for so many reasons. But the fact is, this is my body right now. The same Holy Spirit lives inside this broken temple who lived here when I was at my healthiest, most fit, most attractive days. I can make choices that will keep this body as well-conditioned as I am able, but honestly some of this is simply beyond my control.

So today I went through all my clothes, those horded away for someday and those still hanging in my closet, many ill-fitting even though I try to still squeeze into them.  To my delight I found a few things I honestly didn't think would fit that still work nicely. :)  I kept about 5 things that are very near to fitting, just a tiny snug right now, because if I can loose a few pounds and under-grow what I have, I still have a tiny cushion of options before I hit yard sales and consignment stores for smaller sizes.

I sorted and organized all the rest and can walk into my closet and know that absolutely anything I pull off the hanger will fit on this body and I won't have to fight through five or six outfit changes (and accompanying tears and words of self-loathing) just to get dressed in the morning.  And as a bonus, I now get to bless some friends with an abundance of clothing that can be enjoyed again, no longer a source of frustration to their owner.

But godliness with contentment is great gain.
-  1 Timothy 6:6

Father, please grant me contentment in my "great gain" that I can have a heart to fully embrace the body you have given me and glorify you with it, just as I am.

Giving Up Perfect?

I have been anxious lately. The reasons are too many to count, but it all came to a head on Wednesday. As a result, within one hour, three different loved ones individually challenge me to remember that I'm not perfect, I don't have to be perfect, this world is not perfect, and that all this is OK.

What was strange to me about their comments is that I hadn't been noticing a pursuit of perfectionism in my life. And yet, to hear this challenge from three different sets of lips, each unaware that anyone else had already said something similar, tells me that others see the quest for perfection in me.

This leaves me in awe and wondering. So this week I'm exploring exactly what God has to say about perfection. I'll post yesterday's and today's highlights, then won't have computer access for a few days but will keep studying and be back to share soon.

July 1:
Looked at Deuteronomy 32:3-4, 2 Samuel 22 (esp. vs. 31-33), Psalm 19:7-8

Conclusion: God's perfection revives the soul and brings joy to my heart. My quest for perfection brings anxiety.

Prayer: Lord, please teach me to rest in you and let go of my own quest for perfect.

July 2:
Looked at Isaiah 26:3-4, Matthew 5:33-48 (esp. 48)

Conclusion: God commands me to “be perfect”. So what's wrong with perfectionism then? I think it must be motive that God's getting at here. He instructs in specifics of how I am to stand out from the world around me and the why is so that others will see Him reflected in and through me. I can't strive for perfection for perfections' sake. I can strive to live like Christ for the sake of love and out of that flows a more Christ-like life.

Prayer: Father, teach me to let go of my illusions of control that stress me to the breaking point, and instead let me put all that energy into loving my children, my husband, my friends, with your love. I want my heart to be pure before you, bathed in the perfection of your Son's blood. Let me do what I do to your honor and glory, not for the sake of perfection, but for your pleasure, thus bringing me joy, not stress, along the way.