Prayer

Prayer has been a huge issue God has been working on my heart the past few years, especially the past 8 or 9 months. I've been so convinced that the prayer of a righteous man [or woman!] avails much (Proverbs 15:29; James 5:16; 1 Peter 3:12), and yet there is none righteous, no not one (Psalm 143:2; Romans 3:9-10). I'm so thankful that Jesus imparts His righteousness to me (Romans 1:17; Romans 2:13; Romans 3:22; Romans 4:5; Romans 5:19; Romans 10:4; 2 Corinthians 5:21; Ephesians 4:24; Philippians 1:11; Philippians 3:9; 2 Timothy 4:8; Titus 3:5; )!

I'm living through a long, dry season of huge "unanswered" prayers. Not only are the things I'm praying about not getting resolved, some situations are getting worse... and Worse... and WORSE! For months on end, even years! Keeping faith gets hard!

How amazing that at Mount Hermon, I had chances to pray with several different people and repeatedly see significant and immediate answers. Also, I had an almost fully pain-free week and had notable lack of many profound stroke deficits during my week there! What refreshing reminders that God is still powerful and active in my life.

I appreciate this article on prayer that begins with the powerful description of a common prayer struggle, "We want to talk to God but can’t. The friction of our desire to pray, combined with our badly damaged prayer antennae, leads to constant frustration. It’s as if we’ve had a stroke." 

It's as if we've had a stroke! For obvious reasons, these words  have profound impact for me!

15 years

15 years ago we woke up to a ringing phone and images of 1 1/2 twins towers, the half billowing smoke but not yet fallen. Through the morning my long-awaited toddler played as I sobbed and watched a second tower hit, panicked people jump from windows high, then the towers fall. As the day unfolded, I relayed news of two additional plane crashes to my husband at work. For three solid days I cried and seriously wrestled with God over the issue of should we continue to bring more lives into this broken world or not.

We learned my husband's aunt was initially scheduled to have been on one of those planes and got bumped. Being on the west coast of the country, we were slightly insulated from the trauma in the sense that not every single person here knew someone who died that day, but the tragedy was massive enough that everyone here had at least one loved one they worried over until safety was confirmed. There was still enough communal loss that the churches were packed for week and flags flew abundantly and high. Rick's grandma, who lived next to the airport, lived under eerily quite sky for days.

Since that day, life has carried on. That baby is about to get his driver's licence. We have been blessed with two more living miracles here on earth. My husband has changed jobs twice. We have changed houses. We just celebrated that aunt's 70th birthday and she and her husband had another very near-miss going through the airport in Turkey just before the recent bombing there. (My husband and son were in the same airport two years prior!)

I've published my first book. My father-in-law has battled cancer epically. My mother has given us a sound hospital scare. I've survived a traitoris immune system that tried to abandon me a decade ago. I've survived a chiropractic accident leading to six strokes. A year ago today I had massive abdominal surgery for feminine pain and a renegade appendix.

The joys and griefs have been great. Today, I simply pause to remember. To lay the details of our lives before the Lord. To thank and rejoice for the blessings. To acknowledge the losses. To pray.

#30DaysOfThanks 10 1/2 bonus post

As happens each day, I no more than post my daily thankfulness picture than I think of others I should have included too. Usually I just let those ideas go, possibly to be used again later in the month, often just to store in my heart for the day (knowing I won't remember them again in a few days since I didn't record them right away)!

But today there is a special thanks that I simply cannot let pass without recording!

While I have already spotlighted my hubby, please allow me to express thankfulness for him, for our marriage, once again. If you have followed along since my strokes, you may know that our marriage was hit HARD by my majorly messed up emotions, thought processes, and how we each reacted to the shock and strain. We still have some healing to go, on both side of the fence, but we are getting closer and closer to restored unity, by God's grace!

The past several weeks have been amazing to be the recipient of Rick's intentional, over-the-top kindnesses, his restraint from anything but encouraging and self-sacrificing words and actions toward me, that just keep coming and coming. I am feeling rather overwhelmed by so much grace! It makes me more keenly aware of the love that God lavishes upon us, undeserved! I have tried to express my feeling directly to him, but since I think better through my fingers than my mouth, I wanted to share this abundant blessing in my praise list today.

Last night was cold and stormy, soup weather. When Rick got home from work, in addition to our soup, I had cinnamon and vanilla (two of the only scents I can tolerate, along with some fruity smells like most citrus and mint, that we tend to avoid because too much mint triggers migraines for Rick) oils melting, the fireplace turned on, Christmas music playing (yes, already, I'm one of those people and make no apology for my choice!) and it just felt cozy and bright in here while so dark and damp and blustery outside. Rick came in stressed from the blowing, icy snow drive home, but came in and gave me a big hug, letting our littlest man present me with a bouquet of roses (my favorite flower) on the very day my rose garden was bedded down for the winter!

I need to record one additional special gift. On Sunday (Rick's birthday) he spent the whole day driving and running us to church then from one scheduled activity to the next. Seriously, he had a whole 10 minutes of down time, mid-afternoon, plus some quite time to himself (he will be the first to tell you he is very introverted and needs alone time to recharge!) after 8pm. In the midst of all this, he made time to take us to my favorite thrift shop so I didn't miss their 50% off sale, not only for once, when he took the whole family for an hour and a half, but AGAIN took me back a second time that evening, because I regretted not having purchase a specific dress earlier in the day. (And he was the one to find it still on the rack that evening too!) As our daughter put it before we went, "Daddy must REALLY love you to take you back to Savers for a second time in one day! If it were me, I wouldn't take you back again and I even like shopping and that specific store!" How right she is. Thank you Rick!!! I love you too.

One of several outfits Rick bought for me on his birthday.

Please Help Name My Domain?

I am looking to purchase a domain name. I need something people can remember, spell, is "catchy" and/or speaks to the topics of my books (infertility, loss, fruit of the Spirit, hope, motherhood, illness, heartache, grace, various Biblical heroes like Hannah, Job, Paul). Any suggestions or ideas? I like jennifer.saake but wonder if the spelling of our last name will become an issue? Most domains of my actual book titles are already taken (like the StrokeOfGrace domain, though I could still use these words with hyphenation between them or adding on the word "book" at the end like I did with HannahsHopeBook.com), plus you need a new one for each project and I'm looking for something I could list all books, blogs and any future affiliated projects and ministries under. Maybe something with my used-around-the-internet handle of InfertilityMom, but will that be confusing for people that don't know my background? I've used Jenni's Journal for several projects over the years, so something along those lines might work. I was thinking maybe something alone the lines of ChronicallyTrustingChrist but that is LONG for a domain name. I also love roses, and themes of harvest, gardening and growth. Someone suggested something butterfly related (cocoon, chrysalis (<---- already="" and="" anything="" but="" can="" etc="" find="" flight="" give="" go.="" hard="" i="" ideas="" like="" me="" not="" ready.="" really="" short="" simple="" soaring="" span="" spell="" t="" taken="" takes="" that="" to="" transformation="" wing="" wings="" word="" your="">

Our Girl is Sporting Another Cast

Yup! Not broken (this time) but several more weeks in the boot/cast for a really bad sprain around the growth plate. :( More details at http://strokeofgrace.blogspot.com/2013/03/boots.html. When my husband took her back to the ER Thursday night, it was so ironic and de ja voo-ish, it was almost comical...almost!

Our Week

We started school on Monday. For those who have been watching or wondering, test results are coming back very encouraging so far. Our kids seem to be right on, or ahead of, where they need to be. So again we are using My Father's World, this year the Exploring Countries and Cultures year.

God knew what He was doing by allowing this to be the one year all three kids would be on the same track, since our youngest is done with K and almost (another month or so) done with 1st, and our oldest is in his last year of jr. high, not starting high school for one more year yet.

Our 6-year-old is giving us an emotional workout. If you are thinking of us, please pray for Rick and me to have wisdom and for Little J. to feel calm and secure with all the changes happening in his world. We need God's direction and peace right now!

Praise: The stitches/staples our out! Now to get a little girl fully out of her cast...

Tonight we were telling our 9-year-old who Wonder Woman is. (I guess the kids were right when they said I was "old" and Rick was even "older," meaning he is "older than old" and I'm not much younger.) Rick explained that she was a warrior princess of the Amazon. She wanted to know if that meant WW was going to be a queen of shopping. :)

More Than Meets the Eye

"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever"
(2 Corinthians 4:16-18 The Message).

This morning I was excited to wake up see I was only seeing one mirror on the dresser in my right field of vision. I was confused because images to the far right, overhead and especially to the left were still noticeably doubled. When I shifted my head just a tiny bit on the pillow the mirror was doubled as well. I finally realized that the bridge of my own nose had been blocking the view from my left eye at the angle I first woke up this morning. Overall I would say the double images are moving a little closer together, overlapping each other at times, though when I intentionally try to focus and draw the pictures closer together, they tend to drift farther apart. The neurologist still couldn't ger my left eye to move clear to the left, but another friend commented yesterday about how much better my eyes look.

Birthday Presents for Jesus

Our family hasn't abandoned the tradition of gift exchanging, but I love these reminders to focus on Whose birthday is being celebrated this Christmas:
When the Gifts Are All for Him
Don't miss out on the powerful video at the end. It could change your life!
After our 10-year-old watched this he asked, "Mom, can we invite Mr. Ray and Miss Cora [a homeless couple we met on a street corner a few weeks ago] home for Christmas?"
Hmmm. God, am I up to the challenge of truly being Your hands? Your heart?
We won't be in town for Christmas this year, but what can we do for Ray and Cora, and thus for Christ, for His birthday???

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.

Back to Basics

I need accountability. I am not making time with the Lord my first priority and how I am feeling it! So (homeschooling mentioned)...

June?

Life moves too fast sometimes! My 5th grader and I still have a good 12 weeks of Rome to the Reformation curriculum to finish this summer, along with 30 or so days of 1st with our daughter. We used to intentionally do a year-round schooling schedule but have tried for a more traditional summer off the past couple of years. I would honestly love to be "done" for the summer right now, but I'm praying for renewed energy, joy and focus for us all as we jump back in today after so many schedule interruptions. If you could take a moment to join us in prayer for this, I would so appreciate your encouragement and support!

We survived the sleep deprivation required for Little J.'s EEG last week. The testing and extensive appointment with his new neurologist went very well. He has not had any more seizure activity that we have witnessed, though his neurologist thinks the chronic tummy pain he complains of may be related to seizure activity, so we are watching that more carefully and doing further investigation. Tomorrow morning he will be hooked up to more EEG leads and sent home for with a backpack to do a 24-hour EEG read. If that one comes up all clear, we will just "wait and see" from there. If any concerns show up on the 24-hour test (the 1-hour was all clear) our next step will be MRI (requiring sedation) and possibly medication.

Sunday we purchased an audio/video monitor for J.'s bed and finally got him moved back to his own room after having him sleep with us every night since the ER trip. I honestly don't know that I'm sleeping much more soundly with him in his own bed because we are constantly waking to check the monitor, listen and watch. But it is at least a little easier on my body to have him out of our bed and maybe my new collection of bruises from his toes can start to heal up now. ;)

What a blessing to have Rick home for the 3-day weekend yesterday. We have just under 3 weeks left until my parents leave for their mission trip and time is feeling very short right now. (I depend on them heavily for help with the kids when my health tanks. They will be gone from June 21- until late September or mid October.) Rick grilled a couple of lovely racks of ribs and my parents brought over a huge watermelon for a backyard BBQ last night as we reflected with thankful hearts for the blessings of our freedom and the sacrifices made for us to enjoy evening such as this. To any with loved ones in the military, please drop by and check out the ministry my parents have served with for the past 38 years, Cadence International (formerly Overseas Christian Servicemen's Centers or O.C.S.C.)

I'm still trying to recover from our trip to Stanford. I have been logging symptoms and stats like temperatures daily for nearly 2 weeks now and while I know my doctor needs to have the medical record, it's rather a depressing process. I cried myself to sleep Saturday night, just frustrated at all I can't do, all I'm missing out on in daily family life, all I want to be giving my children and husband and friends but illness steals away. Sometimes I need that release of tears, but today is a fresh day, pity party is over, and I'm praying for wisdom, direction, clear priorities, peace, joy and contentment in the life God has called me to.

Wounding Words

I've said some really ugly things to my husband these past few weeks. Things that reflect some very ugly places in my heart, places where confusion and pain and grief and anger are all swirling and crashing as we try to learn and work through what XMRV means to our family, to parenthood, to marriage, to our lives. Grief is hard work, and because we are in very different places with our grief right now, I become fearful and fretful and angry. Like a carbonated bottle, shaken under pressure, I spew out words that shower those closest to me with anything other than graceful blessing.

I think I'm grasping for control in a situation that seems like it's much too far beyond our ability to begin to cope with. You would think by now I would have learned enough about the character of God and His ability and willingness to carry us that I wouldn't be scrambling so hard to hold tight to reigns that are cutting and blister my hands. Instead of leaning into Him, I'm lashing out, thrashing about, grasping hold of anything and everything, and like a downing woman dragging my husband right down under the waves with me.

If I can't control this then I guess I'm trying to control everything else, letting little fears and thoughts and irritations grow in mind until they are blow extraordinarily into grotesque disproportion. The result is to lash out, usually at Rick, and let him take the full force of my emotional explosion's fallout. :(

In my heart I am so thankful for him, so amazed at his gentleness and love. With my words I tear him down and dishonor him. I become obsessive and fearful and in my hurt, I hurt him over and over. I've sent verbal blows to the most personal levels and my heart aches for the pain I see in his eyes, weight I know I have added to his shoulders. Lord, when I want nothing more than to build him up, to bring joy to his heart, why do I continue to verbally shred him?

God's brought us through so much over the years, the loss of a business, the deaths of our babies, infertility, multiple moves, the ongoing ups and downs of health issues. He is, has always been, will always be FAITHFUL. But His faithfulness doesn't mean the journey never hurts.

Father, please show us how to walk this road together in your love that is patient and kind, not rude nor self-seeking, not easily angered nor score-keeping; areas I'm utterly failing at right now. Speak Your truth to our hearts Lord and please give me a heart that protects, trusts, hopes and perseveres because YOU never fail us!

And to the amazing man who stubbornly sticks by my side even when I test the steadfastness of his love by trying to push him away, please know that your sacrificial acts of love are not overlooked. While sometimes I turn a blind eye toward them (though I see far more than I praise you for), God always sees. I know this skit is from a woman's viewpoint, but I want you to know that you are anything but "invisible" even when my wounding words make you feel that way!

Give-Away for my book

I've been posting updates about my current writing progress for my new book on the life of Paul and living with chronic pain/illness over on my Harvesting Hope from Heartache™ blog. And today I also posted a give away for a copy of my book, Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss. To enter the give-away or catch up on my latest writing ventures, please visit HarvestingHope.blogspot.com. :)

Showers of Blessing

Because I've lived the "drought" of infertility, I'm hyper-sensitive to the fact that my blessings can cause others pain. Similarly, I never know how to reply when I'm sitting with friends and someone who knows well my challenges pipes up with a phrase like, "Well, as long as you have your health, you have everything." It's not that I don't want others to honestly rejoice for what they have, it just seems people should put a filter on their words sometimes, considering the audience upons whose ears their words may fall.

Unfortunately I've lived so tuned into how I might unintentionally hurt others for so long that often I hurt those closest to me by default. I don't always celebrate my kids like I should, because I'm afraid of hurting someone still in the wait. I don't brag on my husband like I should, because I fear stepping on the tender toes of friends facing singleness, divorce or unhealthy marriages.

God's been working on my heart, reminding me that He is the Giver of all good gifts and that it is fine, even proper, to rejoice in what He has given. Sensitivity to hurting hearts is still good and has a place, but sometimes I need to shout His blessings from the rooftop and leave Him to care for those who might be unintentionally tender to my rain-fall-out. It's a delicate balance I'm still trying to work out and would love your input if you have any ideas.

This week I read a "repost to your profile if..." message at Facebook that I wasn't going to post because I immediately thought of several friends hurting over broken relationships. But God prompted me to think of my husband too and so I hesitantly copy/posted, "If you have a wonderful husband that works hard to provide for you and would do anything just for you and your family, then repost this as your status to give the honest, well-behaved men out there the recognition they deserve!♥ Because great men are few and far between, and I have one of them.♥"

Turned out he had been having an especially hard week at work and had been feeling devalued by me as well. About an hour later he posted, "Great wives are also in short supply, and I have one of the best!"

Thank you, Father, that You are both found in the desert place and where the streams of abundance flow. Please help me to remember to take time to dance in the rain when you shower it upon my heart. Show me the balance between splashing in the puddles with childlike abandon and childishly splashing my blessings in the faces of those who are thirsty.

In the Season of Rain, Pray for Rain posted at (In)Courage today is a great reminder to be thankful for the blessings God showers upon me.

It's Raining

I usually like stormy weather. It makes me feel cozy. This week has been a drizzly, dreary one though and it seems to fit how I'm feeling.

Rick's dad was hospitalized last night, had emergency surgery today, and is spending tonight in ICU. While I'm concerned and feel bad for him, I've been quite peaceful and not overly stressed about him today, but I know any kind of stress is hard on my body. Praying especially for my hubby as he is very close to his dad and I know this is hard on him. Also praying for Chile and the tsunami watches today.

I've been fighting a couple of different kinds of infections all week (plan to see the doctor again Monday) and have basically only been out of bed for a few hours on Thursday afternoon to take my kids to homeschool co-op (used a wheel chair), a couple of hours around the house yesterday to try to get some homeschool projects caught up, and again for a few hours today simply because I want to "feel normal" rather than lying around in bed all the time. There isn't a single room in my house that looks orderly or cared for - the kitchen and bathrooms probably bother me the most, but the laundry mountain isn't a pretty addition to my hallway either. As pathetic as it sounds, some days I lay in bed daydreaming about having enough energy to scrub toilets!

My family went out for lunch together this afternoon and it felt so good to be out. Have I mentioned how much I love Chevy's salsa? I finally got my "fix" today and I'm a happy girl for that! Then we came home and I tried to help my son with a science fair project but fizzled out really fast and had to come back to bed. Was just falling asleep when the neighborhood boy who has knocked on our door every afternoon this week was at the door again...

I feel bad having to tell this kid that he can't come in and play (and I think he's starting to think I'm making it up when I tell him, "I'm sorry, I'm sick today") but he is a high energy kid and I just don't have it in me to supervise all the things he wants to get into and how wild he gets my kids while he's here. And, as I mentioned, it's been raining all week, so I can't exactly just send them all out to play instead.

What I'm thankful for today is a warm house, good medical care for my father-in-law, the love of family (included extended family) and a laptop computer that can come to bed with me. I'm really praying that I'm up to church tomorrow and that we can stay for the church lunch scheduled since, for the first time in months, I won't have to rush off to the hospital for another IV!

New Year Tears

It's one of those days when I just don't know what's wrong with me. I cried myself to sleep last night, snapped at my family first thing this morning, then went back to bed and cried some more. I had pictured a beautiful, quiet family day as we welcomed in the new year and instead I'm making my family walk on egg shells. I know I'm over-tired. I know stress over medical news (and lack of other long-awaited news) is really getting to me.

I also know that the attacker (I refuse to capitalize references to the old snake) would love nothing more than to steal away the joy I've just been posting about. And so today I'm starting this year in tears, but also seeking after the Lord and asking Him to work His peace in my heart! I would love to have you visit my prior post and share with me your God-sized dreams for this new year.

"You will keep in perfect peace him whose mind is steadfast, he trusts in you." (Isaiah 26:3, NIV)

God Sized Dreams

(In)Courage is asking, "What are your God-sized dreams for 2010?" I've had so many God-sized answers over the years - a loving husband, three living miracle babies, dear friendships, a beautiful home, a minivan in our driveway, and now a new laptop in my hands. I feel so blessed. It feels sort of "greedy" to ask for more, and yet, God delights in giving good gifts to His children, so I am invited to ask.

But what would God have me ask? These things (beyond the blessings or family and investing in relationships) are so external. Yes, they matter to me and because they matter to me, they matter to God. But with a God-sized answer at stake, shouldn't I be asking God sized questions? Lord, what would YOU have me dream for this new year?

"Delight yourself in the LORD and he will give you the desires of your heart."
Psalm 37:4 (NIV)

This past year God taught me about joy and I look forward to continuing this learning adventure in 2010! Some of my heart's desires for 2010, ones that feel quite God-sized from where I sit, include ongoing progress toward prevention of, treatment for, and (dare I hope?) even a cure for XMRV / Chronic Fatigue Syndrome, an illness that has imprinted itself over my entire adult life. I would also love to see God's continued unfolding of what He would have me learn about the life of Paul and his "thorn in the flesh" as He prepares my heart to write a book on living with chronic pain and illness.

I love to see my children thrive in their homeschooling and pray that I can be "fully there" in the teaching/learning process with them this year. I pray to be a blessing to husband, a "helper suitable" as God has given my the great joy of serving by his side. But most of all, my God sized dream is...



...Something I will be making a matter of prayer these next couple of days. I honestly don't know what God would have me seek and dream for the year ahead. It's a thrilling prospect, a horizon of hope, a fresh start, a new beginning. Lord, please help me to gracefully and willingly let go of the "fluff," the things that get in my way of seeking hard after You, the things that so easily entangle me. Instead, please replace all that stands in Your way of blessing me with the prefect gifts You long to shower upon me. Please fill my heart with Your dreams for me and allow me to delight in You as You fulfill them!

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."
James 1:17 (NIV)

Edited Jan. 1 to add that after a couple of days of prayer and reflection, the dream I'm seeking from the Lord this year ultimately seems to boil down to the single word, "peace". No, I'm not talking stereotypical beauty-pageant plea for "world peace," but rather the inner quieting and stilling of my heart to rest in the Lord through the unknown ahead.

"Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting."
Psalm 139:23-24 (NIV)

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.

IVIG 4, heading to Stanford, and a Busy September

While this will be a long post, it covers many things. It is not a reflection of my energy level, but rather a collection of things I've coppied/pasted here over the past several days, not having the energy to make a coherant post out of any of it until now. So thank you in advance for bearing with my bullet-point method today and I hope you find something of use or interest in my collection of "stuff".


- I'm so excited! My fundraiser for the Whittemore Peterson Institute benefit tickets is about 90% funded now. When I set up that link I really had no idea what to expect, but my friends have been so generous and I'm so thankful! Does anyone else want to "Help Me Dance" on Sept. 12?


My infusion Sunday was "exciting" and I'll share details in a moment. Here are Tweets I posted yesterday moring (12 hours post infusion) in 140 or less word chunks:

- Insomnia thanks to #migraine meds

- 4th IVIG included pounding chest & need for oxygen tank but benadryl kept throat from swelling. Hope it helps in the long run. #cfs #mecfs

- PICC line made yesterday so much better. No 1/2 hour digging for IV veins! #mecfs #cfids #cfs #chronic #illness #infusion IVIG

- I've been awake since 2AM. If I try to go back to bed at 5 will I just make myself too groggy to function by 7 or help later???

- Decided 2 take a shower rather than get groggy going back 2 bed. Was pretty funny plastic wrapping my PICC arm! #mecfs #insomnia #infusion


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So yes, I had my PICC installed on Friday. The process of getting to the hospital, registering, getting set up in a sterile room, double checking everything for latex-free, and getting my arm ready for the doctor was all rather lengthy, but the instalation itself was over in about 5 minutes. I had a little vertigo entering the room and was quite dizzy sitting back up after the procedure (reminded me of the Tilt Table test when they uprighted me afterwards), but overall it was pretty easy. My body didn't like the stress of having a tube inserted from my arm to my heart, or maybe it reacted to the mild anesthesia (?) but I ran about 102 temp most of Friday afternoon.

A sweet friend watched all three kids from 7AM to nearly noon while I got the PICC, went up to infusion for training on homecare and jumped through the hoops of trying to get homecare supplies. Sarah even fed me lunch when I got back to her house to pick up the kids! When my homecare supplies and insurance process were finally ready about 4, my mom (just 10 days out from her knee replacement surgery) drove me to my appointment to pick up supplies and we spent another 90 minutes their receiving their training along with a "sale's pitch" of why we should be doing infusions through their center rather than at the hospital that our insurance approved. (Um, yeah, I'm just happy to have insurance approval on this. I am NOT rocking the boat by telling my insurance that I want to change anything! And as long as I'm as reactive as I am, I really feel safer having my infusions in a hospital setting in case something goes really wrong.)

Amazingly, and all I can think is that this is testament that the IVIG is doing SOMETHING positive for my body already, by the time I got home from the supply clinic and normally would have fallen flat on my face, my fever had broken and I felt good enough to join my family for a couple of hours at the state fair! This is so far removed from anything in my normal reality that I can't even put it into words. Friends, I didn't even use a wheelchair!!!!!

At the infusion on Sunday we started off with benadryl in hopes of offsetting the tight chest and burning/swollen throat and tongue I had experienced the previous week. It was so nice to walk in, hook up my PICC and not have any pokes! I did OK for the first while of the IV, then started getting a tight chest again and broke out the inhailer. That helped, but only for half an hour or so. I got a sore throat again, but not nearly as bad as the previous week and it did not progress to feeling swollen or involving my tongue. Then my chest started getting tighter and tighter and hurting more and more, with aching down my left arm as well. (That was also the arm with the fresh PICC and big bruise, so hard to say exactly what pain was coming from what.)

My nurse was working with chemo for another patient, so I couldn't immediately get her attention when I started having trouble breathing, but the moment she noticed my distress she ran over to flip off my IV and stuck oxygen in my nose. I don't have a very clear memory of nearly half an hour there (I know the timeline only because a show was just starting on Food Network when I started feeling like I was in real trouble and it was ending when I became more "aware" and stabalized again). At some point she was able to finish the chemo start and get back over to me to monitor my vitals and she said my heart was racing pretty hard. It's a scary process, but we are hopeful and prayerful that in the end it will prove worthwhile.

I think one of the hardest parts of the day was having my husband and kids get there to pick me up at the end and seeing them trying to process walking in on a very sick looking Mommy still hooked up to the last few minutes of my IV drip, the blood pressure, the pulse/02 monitor, and oxygen still in my nose. I am always sick, but I don't "look sick" most of the time, so this was something new for all of us to process.

A migraine hit at bedtime that night but we got on top of it right away, including meds and sleeping on an ice pack and when I woke up at 2AM I felt much better (but then could never get back to sleep). I ended up going into my sons' room about 10:30 yesterday morning to help our little one put away his stuffed animals and closed my eyes "just for a minute" and woke up about 1PM to a ringing phone! The kids had been good as gold, with the little guy curled up asleep with me and the older two quietly entertaining themselves and not even making any messes. I had no idea I had konked out like that!!!

For the next several hours I felt just a touch dizzy and a bit narcoleptic (every time I sat down or tried to read anything I either couldn't keep my eyes open to focus or actually did fall asleep again) and my throat was sore and raspy. There is absolutely no way I would have even thought of attempting to drive under those conditions as I could have easily fallen asleep behind the wheel before even getting to the end of my own street. My husband talked to me over the phone about 1:30 and said I "sounded drugged" but I really felt pretty good other than the sleepiness. I do know I have some cognative stuff going on as I'm having problems getting out words at times or typing the right words (this post has been edited and re-edited more times than I can count, just to be readable), but I felt some of the sweetest more "rested" feeling I have felt in a long time yesterday afternoon. I can't remember the last time I just felt "sleepy" - that warm cozy, "I want to curl up like a cat and take a lazy nap" feeling - rather than truly "exhausted" - that kind of pain and fatigue and extreem tiredness that can't be slept away and doesn't feel the least bit cozy. Yesterday I actually felt "sleepy" for the first time I can remember in litterally YEARS!!!!

I did have a bit of trouble getting back to sleep last night (finally crashed about 11) but once I got to sleep I slept soundly. This morning I gladly could have kept sleeping probably for several more hours, but our 3-year-old had other ideas and I've been up since about 7. I'm feeling more on the tired end of the spectrum again this morning rather than just sleepy, but still feeling better than many days. I am pretty sore today, all over, but again, certainly not my worst day. It's only 9AM, so it's hard to say how the day will unfold, but I'm hopeful that we will get back on track with school today since yesterday I couldn't focus to read.



- For all our family is enduring, I am continually reminded of just how easy we have it, how blessed we are. My heart is heavy for many, but if I could especially ask your prayers for two families, I would greatly appreciate having you join me before the Throne of grace on behalf of the Evans and the Schneiders.

Dan and Barb Evans are missionaries with Cadence International (the orgization my parents have ministerd with for 37 years) and Barb has just had surgery for a brain tumor that they are now saying will take her life within about 4 months. She has two adopted miracle children, I believe about ages 5 and 10 with the older one having some developmental delays of his own. I'm following Dan's updates on Twitter.

The Schneiders are a family from our homeschool co-op. Their older daughter was in a class with our older son about a year ago and their daughter, Erica, was in a class with our daughter when they were both 5. Erica has been undergoing treatment for Lukemia ever since. It has been a brutal year for this family. Erica is about to enter the most harsh stage of her treatment and will have a double course (typically only given once) but if this does not completely wipe out the cancer with the double course, there will be no more options and she will have less than 5 more years to live. I watch the cancer patients come in and out of the infusion center each week and know a bit of what they go through - I simply cannot imagine the pain and fear any child must process to endure all that or what it would be like to be a parent helpless to stop the horror for your baby.


- This Friday is my final appointment in follow up for the foot I broke last May. I'm doing well enough that I think I will just cancel the appointment. It's so nice to have something actually healing well! :)


- I'll have my 5th IVIG infusion on Sunday the 6th, then we leave the next day for the tedious drive to Stanford to meet with another specalist there on the 9th. If I'm at all able to still function by then, we will be back in Reno for the I Hope You Dance institute dinner on the 12th, though I will be thankful even to be functional enough to attend in a wheelchair after the trip to the Bay and back!


- We are still looking forward to our RV trip (the free rental I won by blogging) the end of the month and hope that works well as I can lay in bed as much as I need to while we travel. I have three articles I'm needing to write for September deadlines, two as a Natural Beauty Expert for Dr. Mommy and one I'm really excited about for (In)Courage on the topic of hope, and a radio interview for Rest Ministries National Invisible Chronic Illness Awareness Week (NICIAW) at noon on the 15th. It's a big month and I appreciate your prayers for wisdom in knowing my priorities and strength for each step God calls me to take.