Wednesday, December 30, 2009

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)

Saturday, December 26, 2009

Choosing Joy

17 years ago last month, my husband and I, just three months into a new marriage, set out on the intentional path of striving to expand our family. Our oldest living son turned ten this week, so obviously that dream was slow to be realized!

Through those first seven years we had just two positive pregnancy tests. One resulted in our oldest's birth. The other led to the miscarriage of our sweet Noel Alexis. It was 15 years ago tomorrow morning that the bleeding and pain began. Tears for a few hours, followed by five months of numbness.

In hindsight I now see that my total lack of ability to process any form of emotion after Noel's death was more than just "denial" or "normal grief," but rather grief compounded by post-partum depression. (A journey I would again face on a much grander scale after the birth of our second living child, our daughter who will be seven next month.) It took me nearly half a year to allow myself to say the words, "I was pregnant," or "I had a miscarriage."

When I finally did choke the words out, the flood of sobbing, body-wracking tears last for hours! The emotions that had been pent up for months, not allowing a smile, a laugh, a tear, stayed close to the surface for the next few years, never giving me a moment's notice of when they might spring forth. I had irriational thoughts, like wanting to walk up to total strangers and simply announce, "My baby died." Infertiltiy is brutal. Miscarriage is torture. To miscarry our only known child in the midst of a many-year battle through infertility threatened to drive me to insanity with the intensity of my grief.

While on the one hand Noel's death intensified the infertility experience to a more painful level than I could ever have imagined, on the other hand she brought a strange measure of healing as well. I found joy in knowing that after more than two years striving for motherhood, that I was now, and forever more would be, somebody's Mom! Once I could admit to myself that Noel's brief life had not been a dream, simply a "late period" as I tried desperately to convice myself, I found some measure of hope and comfort in the fact that she had actually touched my womb, even if all-too-briefly.

Naming Noel was a very helpful step for me. Rick and I, not knowing if I had carried our son or daughter, but both "feeling" she was a girl, prayed long and hard over the right choice of a name. We chose "unisex" manes with meanings that touched our hearts, spelling Noel with the male spelling but pronouncing it with the femine pronouncation. We figured if "she" actually was a son, then he would forgive us in Heaven, but giving "her" an identity that I could relate to was so very important to me. Her name means "Christmas Minister of Needs" for she came and went over the Christmas season and ministered deeply to the hearting heart of this infertile want-to-be mother. I read of how "Mary treasured all these things in her heart" and my heart treasured the knowledge of the daughter I would some day see face to face in Heaven.

I hated when well-intended friends would try to comfort me with, "Well, at least now you know you can get pregnant." From anyone else, those words seemed to invalidate my child's precious, unique life and the profound loss to have her missing from ours. But when not minimized by other's "at least" statements, to be honest with myself it also was a relief to realize that we were truly "only infertile" and not utterly sterile, that there was hope of future conception.

But it also terrified me that if it had taken two years to conceive in the first place, even with medical aid, that it might be a very long road to a second child. And now that I had a "history of miscarriage" my innocence was shattered. Getting pregnant was just the first step, but the expectation of a living, bring-home-baby at the end could no longer be taken for granted in my heart and mind.

If you have stuck with me through all this rambling, you are probably wondering what does any of this have to do with "choosing joy"? With the dawn of 2009 God impressed upon my heart that my "theme word" for this year was to be Joy. He's confirmed it over and over, and while my husband may wonder where that joy has been (because he's seen me in some pretty black places with my health this year - 10 weeks in a foot cast, followed almost immediately by 5 months of IVs - physically exhaused, grumpy and especially wrestling to process all the emotional anguish of news about this retrovirus), I have to say that God's joy has been more tangilbe to me this year than in any I can remember since we started the infertility journey 17 years ago. I may not always be "happy" but God's joy, bouied by hope, and sustained by peace that passes understanding, has been tangible in ways I cannot put into words.

Here, in this week where we mark the birth of Christ, the death of our first daughter, the birth of our first living son and the due date of the child who would have been turning 8 but is also awaiting us in Heaven with two siblings, God gave me a beautiful reminder of all He has taught me this year:
The Christmas stocking I've had since childhood had too many holes for my husband to use to put some goodies in on Christmas Eve. So we pulled out a couple of "extra" stockings we had picked up one year when we were out of town for Christmas and had forgotten our regular stockings at home. One bears the script "Noel" while the other says "Joy." In past years, without hesitation, I would have instantly grabbed "Noel," thinking much more of the daughter who was not there to share in our celebration than of the Christ-child who's birth I should have been focusing on. This year, with only the slightest moment's indecision, I eagerly reached for "Joy" instead.

Monday, December 21, 2009

Birthday Reflections

Dec. 21 already. Amazing! I'm reflecting on "birth" right now - the birth of the Son of God (that came at the cost of a Father's greatest grief), the birth of our first living miracle (10 years ago this morning I was just starting labor), and the births we never got to enjoy, our little ones awaiting us in Heaven.

Joel Samuel, who shared a due date (2 years later) with his big brother and would now be turning 8, has been especially on my heart these past couple of days. His name means "The Lord will repay the years the locusts have eaten," and we named our son in faith that after so much heartache (deep financial struggles, multiple failed adoptions, miscarriages...) God surely had something more in store for us than years of tears and loss that had marked our first decade of marriage.

We had no idea what form that "something more" would be, perhaps emotional, spiritual or even physical tangible blessings, but we clung to the hope that His "more" would be perfect in His right timing and that He would not leave us adrift in the despairing grief that threatened to sink us. My heart is full with all I want to write on the kindness and grace God has washed over us in the eight years since Joel left my womb for Heaven, including two more living miracle babies! Yes, there have been hard times too, like my recent diagnosis of a retrovius (XMRV is one of only 3 known human retroviruses, the most well-known being HIV), but God has been so gracious through it all.

It seemed for so long we were the ones grieving, in need of tangible financial or other help. This Christmas, when so many are struggling, we live in a warm home with bountiful food, God's blessings overflowing. My eyes tear as we hand warms socks and an energy bar to the man with the cardboard sign on the corner, as my husband quietly walks forward to pay for lunch for the man who digs through his pocket and turns to walk out of the fast food joint because he doesn't have the change to cover a value meal, as we place a few small gifts of love in a friend's arms to put under the empty tree in her tiny apartment. We do it for Jesus. We do it for Joel.

[Edited Dec. 26 to say, after dedicating this entire post to Joel, I realized belatedly that it was actually Hannah Rose who shared a due date with our oldest J. She is the one that would have been turning 8. Joel would have been due in September, as we had two back-to-back miscarriages.
There, Mommy-guilt for having mistaken dates surrounding the lives and deaths of my children, now somewhat relieved by this admission. As this is a mistake I still can't believe I would ever make "in my right mind," and especially one I'm still shocked that it took me nearly a week to even realize I had made, I'm chalking this one up to CFS/XMRV "brain fog". :( ]

Yesterday we enjoyed the blessing of a long, leasurly lunch with Rick's parents to celebrate Big. J's addition to our family 10 years ago - such a wonderful change of pace after 19 weeks of spending my Sunday afternoons hooked up to IVs! (On top of that, my hives are even starting to clear up. What a blessing!) We'll celebrate him again tomorrow (his actual birthday) with my side of the family.

My brother, sister(in-law) and nephews got in from Washington yesterday evening and spent the night with my parents. We will be seeing them in a couple of hours and spending the next 10 days together, so you might not hear from me much until the end of the year. As a "Christmas gift" I wanted to point you to a current blog give-away for Joy Dekok's wonderful book, Rain Dance. It takes on some heavy topics (infertility, post-abortion syndrome, grief - topics that scared me away from the book for far too long) but is an amazing read and will touch your heart. Enter to win your own copy at http://www.crazy-for-books.com/2009/12/blog-tour-review-giveaway-rain-dance-by.html

Friday, December 18, 2009

Happy Birthday

To my Mom (one of my dearest friends) today.
To our oldest son on Tuesday.
To Jesus next Friday!

My brother, sister-in-law and nephews get here Sunday night!!! :D

Thursday, December 17, 2009

So Blessed

I was so low when I posted yesterday. Thank you for bearing with my burdened heart. Tonight, I still ache and pray for those who have loved and lost, but my spirits have been lightened by the helping hands of a sweet friend who left her family for six hours to come and bless me today.

My bathrooms SPARKLE tonight (no small feet considering there have been 10 straight days of a tummy flu going through the family - EEEWWWWWWW). And I can walk across my kitchen floor without sticking to it - It has probably been four months since I've physically had the energy to mop (again, EWWW!) so this really is a HUGE blessing. I am overwhelmingly thankful for Becky's sweet servant's heart.

Wednesday, December 16, 2009

Life is Short

I hope this post isn't too much of a downer. I have a heavy heart tonight and just need to type it out somewhere. Since it doesn't seem like many people actually read this blog anyway, seems like a good place to work out my thoughts without casting gloom over too many.

This year I've had two author friends who had brothers-in-laws hit by drunk drivers. One was killed, the other is recovering surprisingly well. But both accidents were sobering reminders that life can change in the blink of an eye.

Last month a friend from Jr. High, whom I had only recently reconnected with via facebook, posted that her mom had died. It was sad to read as I remember her mother fondly and it was a bit shocking to think of someone as young as my own mom dying. But I hadn't seen the woman in more than 20 years and while I hurt for my friend in her loss, it seemed rather far removed from my own reality.

Shortly thereafter there was a terrible car accident in the dark of night at the intersection closest to our home. Three teenagers were life-flighted to the hospital while the mother of one lost her life that night. There was no alcohol involved just excessive speed and reckless driving. I knew no one involved in the accident, but heard the sirens that night and the roadside cross, about half a mile from the marker of a teen who was killed on the same road 2 years ago, is a sobering sight.

Then the weekend after Thanksgiving my parents learned that the son of a close friend was killed when he fell asleep at the wheel, driving back to college from Thanksgiving. I didn't even know the man, but because it hit my parents so hard, death seemed a step closer then.

And now, in the last 2 days, I have learned of three more deaths; the 2-year-old son of an online acquaintance who fell in the family pool, a doctor who had helped unravel some of my medical puzzle and treated me on several occassions, and now the mom of a very dear friend.
I hardly know the child's mother at all, just ache for her heartache as she faces gifts that will never be unwrapped under her tree.
But I had talked with my friend's mom, both face-to-face and over the phone, several times in the last couple of months, and suddenly she is gone. My heart is absolutely broken for my friend and there's this lump in the pit of my stomache that I can't shake away.
But my doctor's loss hits me perhaps hardest of all, for not only was I a patient OF his for quite some time, but I was also a fellow patient WITH him, just three weeks ago giving up my bed in the infusion room so that he could use it for what would end up being one of his final cancer treatments...

I know I am exhausted and sleep deprived after a week and a half of caring for family members with the flu, and that's definately impacting my emotional state at the moment. Physically I'm also struggling thanks to these relentless hives that have me more on edge than normal as well. I'm not even sure what I'm trying to accomplish with this post other than to say that my heart aches for all the pain so many are facing, and yet I am overwhelmed with the blessings of simply drawing my next breath and putting my arms around my loved ones. So if nothing else productive comes from this post, other than the easing of my own heartache by the therapy of writing, I beg of you to celebrate this moment and take time for those you love, because life is so very fragile and fleeting!

Tuesday, December 15, 2009

IVIG on hold

I have to say that the IVIG is providing some obvious benefit because my entire family has had a nasty tummy bug and I've been the primary care-giver for 4 vomitting loved-ones for the past 9 solid days without getting very sick myself! This is the sickest I've seen my husband in probably 15 years and is one miserable bug. That I've managed to all but completely avoid it is unheard of. I've been nausiated, achy, lack of appitite and running a fever around 100 (none of these things are really out of the ordinary for me), but I'm still on my feet and I haven't thrown up once, even though I've only had 3 solid nights of sleep in the entire span of family illness.

So I made it through 19 infusions before my body would have no more. I spent last Sunday in severe pain, feeling as though my arm was being held relentlessly against a hot stove. Thanks to 3 doses of benadryl (the second two via IV) I did not have breathing issues until the very end of my infusion, but the hives were out of control. It seems I'm now allergic to tegaderm (the clear bandaging that is used over PICC lines and IV lines) and we had to switch over to a secondary IV line mid-transfusion, remove the dressing on the IV, and then even in drug-induced sleep I was jerking awake violently, trying to get my arm away from the searing pain. I have open hives on my chest and they continue recurring on my arms, neck, face, and now on my feet as well. Under the bandaging where I've had my PICC for the past 4 months, my arms is just one raw, oozing mess.

Today we pulled the PICC line. My doctor is giving me a full month off from IVs, then we will try again mid-January and space them 2 weeks apart for each of the remaining 5, with hopes that my hystimine levels will settle down enough between now and then to be able to sucessfully complete the treatment. While I hate to stop them when it seems they were finally making a difference, I can't help to be incredibly relieved to have the PICC out and a break from the Sunday treatments. In just the 7 hours since the line was pulled and all dressing removed, my arm looks (and feels!) amazingly improved over even this morning (though it still makes my family gag to see it even in this speedily recovering state).

So at the moment, I don't have any other medical appointments or treatment scheduled until Jan. 17 when we resume infusions on a bi-weekly basis. What a wonderful Christmas blessing! Now if I can get my skin feeling better and keep from getting sick without the infusions, that will be fantastic.

Thursday, December 10, 2009

Geography Lesson

Today I mentioned something about Los Angeles to our 6-year-old, Miss R. She informed me, "Speaking of Los Angeles, we haven't seen Jacqueline's family in a while and we really need to get together with them soon!" I agreed that yes, we did need to get together, but wanted to know what that had to do with LA. She replied, "You know, Jacqueline's mommy, Miss Angela, like Los Angeles!"

Dollar Doll Clothes

Is there a little girl in your life (niece, friend's daughter, student) who loves American Girl size (18 inch) dolls and you want to make really happy? This is an adorable and very inexpensive idea that is sure to delight!

Dollar Doll Clothes from Underware! You have to take a moment and check out this amazing, frugal and adorable idea!!!

More info and links about doll resources can be found on my Teens/Tween blog.

Wednesday, December 9, 2009

Jesus Clause?

We have always been quite upfront with our kids, trying to tell them the truth in all areas and honestly answer any questions they have as clearly as we can, on topics ranging from sex to Santa Clause and everything in between. But this year Little J, at not quite 4, is blurring the lines between fiction and reality. While he will tell you that Jesus is real and Santa is just pretend, he doesn't fully "get it" yet.

Add to that a 6-year-old sister's passionate efforts to evangalize him by force (we keep explaining to her that we can't make him trust Jesus and that if God is calling his heart, he will respond in his own right timing, but she is desperate to see him make this choice), and here's the prayer we heard from him this week. "Dear Jesus. Please take me off the naughty list..."

It was a precious moment, but I had to bite my lip to keep from laughing out loud!

Win a Kindle

I just discovered The Great Kindle Giveaway and am excited for a chance to win one of these great tools. He's giving away up to 15 free Kindles (the more business he earns through his free promotion, but more Kindles he'll end up giving away) and I would love it if I won one of them and so did you! To enter, just sign up for his email list (that's easy!) and if you want more entries, he gives you several more ways to earn them (posting a quick blog entry like this one for example). Won't you join me in giving it a try?

Tuesday, December 8, 2009

Joy & IVIG 18

I just posted about Joy over at InnerBeautyGirlz. Would love to have you swing by and read a bit more about our infertility joureny, a personal Christmas tradition, a give-away drawing, and a new shade of Affordable Mineral Makeup™. :)

IVIG #18 started off a little rough, but about 4 hours in I took an amazing turn and actually felt pretty decent for the end of the infusion and ever since! I am still incredibly tired, but I did not come home and crash and actually functioned reasonably well all day yesterday even after getting up with a sick child in the night and doing lots of extra loads of laundry thanks to her tummy bug. I still don't feel "good" but surprisingly "better" than my normal post-infusion days. Six more weeks to go.

I convinced the nurse to leave off the PICC line security tape "butterfly" this week. I'm at pretty high risk for loosing my PICC line without it, BUT I have very few new hives from this last dressing change and the old hives are starting to heal dramatically! I did try a vitamin supplement again last night (that I had started shortly before the hives first began, but stopped about a week ago in case there was any connection) and the existing hives did flair up noticably within half an hour of taking those, so I think I will continue avoiding them until we are fully finished with the IG. But the biggest culprit really does seem to be that PICC line butterfly and both the immediate and ongoing improvement in my pain and frantic itching levels without using it at the last banddage change is DRAMATIC improvement!

Sunday, December 6, 2009

Insomnia Ramblings

Again...

I've been doing better, overall, with sleep lately. But tonight I woke up a little after 2, hives got stirred up again (been battling deep, raw, oozy, nasty ones for about 3 weeks, initially triggered by my PICC line dressing), took more Benadryl. Here I am, more than an hour later, desperately wanting to be back to sleep, but finally giving up and climbing out of bed for a few minutes to see if staring at a computer screen might induce the sleep-bringing numbing of my mind. My legs are alternatively numb and prickling with pain.

Today's infusion day again. They are pretty much blurring together now, but I think I have just six left now, either including today or at least after today. Not going to bother checking the calendar at the moment. We seem to have a pretty good system going - pretreat with Benadryl 50, half a bag of normal saline to make sure I'm well hydrated, the one actual bed in the infusion center so I don't fatigue myself from the effort of having to stay semi-upright in a recliner, turn on the oxygen tank, start the IVIG at an agonizingly slow rate of 5, then monitor for the next 4-6 hours to see how I do. When my chest starts getting tight or my throat starts to burn, the second dose of Benadryl is called for and the oxygen gets turned up a bit higher.

We coax the IG drip up 2-3 points at a time, hoping to get to an infusion rate of somewhere between 12-18 before the day is over. The higher we can go, the sooner I can go home - but it's a delicate ballance, because if we go to fast, I face harder reactions as the benadryl wears off, like the day we nearly called 911 when I got home and couldn't breath. Somewhere along the line, we change my dressing and pray that the domino effect of fresh hive break outs won't drive me too far over the edge. Once the beeper tells us that I'm finished for another week, the second half of my saline bag pumps on, bringing refreshment and the ability to walk out of the infusion room on my own power. (OK, let's be honest here and admit I can never do anything on my "own power," only through God's life-breathing strength, but I think you get the point - I'm thankful to be able to make it to the elevator without a wheelchair by this point.) I come home tired and clawing at my PICC line hives (and other random outbreaks), glug more benadryl, attempt some semblance of dinner with my family, then crawl in bed for the night.

I'm thankful that before all this awaits me for yet another day, that first I will be able to sit at Jesus' feet this morning, be refreshed and challenged by the insights into His Word shared by our pastor, and lay all the burden down through praise and worship. I'm not doing such a great job at daily digging into my Bible on my own through this season, so I'm utterly hungry for "spoon-feeding" from others while I'm too overwhlemed to do much "meat cutting" on my own. Thank you, Lord, for my family including an amazing husbnad, kids, parents and extended family, a lovingly supportive church, and especially for Your Spirit to walk with me each step, through places and experiences I otherwise would go alone.

Friday, December 4, 2009

Better to Give...But You Might Also Receive!

I love the loving hearts of my miracle kids. They have been saving all year in great anticipation of the gift-giving catalogs coming in the mail at year's end. They just purchased a hive of bees, a dozzen chicks, and a "Jesus Loves Me" lamb for needy kids/families overseas. (Mom did a little gift-matching to get them all the way there, but they hit the goals almost totally on their own!)

Editing to add another story with a lump in my throat! Oldest son (not quite 10) just handed me $100 of his own money saved up over the past couple of years and asked me to write a check on his behalf for Bible translation for those who do not have Scriptures in their own language. I would like to invite you to visit God's Word for the Nations to see what's inspiring our sweet boy!


Want to join in the blessing? Here's where giving may "pay off" for you! Visit Samaritan's Purse (the Christmas Shoebox people) and shop/donate from your computer - couldn't be easier! And after you have opened your purse a bit, head on over to Sarah Mae's Like A Warm Cup of Coffee blog and enter to win a Sondra Roberts purse valued at over $100!

Thursday, December 3, 2009

Buy a Christmas Tree & Clean Water for Africa!

* 1 in 7 people don’t even have access to a clean water source.

* More people in developing countries die of a water related disease than of malaria and HIV/AIDS combined.

It is easy to feel helpless, half a world removed from such suffering, but as shared in my Thanksgiving post at Hope Harvesters™, there are some simple, everyday things we can do that are easy for us, yet life-saving for others. Consider your Christmas tree purchase for example.

Due to allergies our Christmas tree is the boxed kind, but if you plan to bring the smell of fresh pine into your home this month, did you know you could help bring fresh water to Africa at the same time? Please visit The TreeWell Project at http://lifechurchreno.com/treewell

Several of our friends attend the church sponsoring this great project and I can assure you there are great people with hearts to serve hurting people - your money will be used well! (If you don't live near Reno, NV but like this idea, think about contacting the director of this project to help plan something like this from your own town for next year.)

* Statistics quoted from The TreeWell Project website.

Monday, November 23, 2009

16 down, 8 to go

I'm officially 2/3 of the way through my IVIG infusions now! I remember my doctor telling me, probably more than a year ago, that when he asks patients what one thing he has done for them that they would take with them to a desert island, most say the IG. I haven't gotten that result, and actually was about ready to throw in the towel before this last infusion because they seem to be making me feel worse rather than better...

Until yesterday. I know it's very early to really see how this one infusion will make me feel in the long-range, but when Rick picked me up from the hospital last night, for the first time I came home not feel totally and completely wrung out and done in by the infusion process. It had been a long day, about 6 hours and 3 doses of benadryl (pretreatment, then hives, then tight/sore/swelling throat) to get through the infusion, but as the saline started pumping afterwards, I actually started feeling realatively good!

I ate dinner with my family, took more benadryl and headed to bed. Rick said I flipped and flopped a lot and asked me if I had bad dreams because I had pulled the blankets all apart, but I just felt good, hard, more-restful-than-normal hard sleep. I had a really hard time waking up this morning, but have been up and going pretty well since about 9:30. I'm definately needing to crawl back in bed for a nap this afternoon, but am thankful to be functioning this well at all on a Monday!

Most of yesterday's hives have cleared up, though I've still got one patch of pretty nasty, oozy hives right next to my PICC line (we think I've developed an allergy to the skin prep treatment we have been using to keep the bandages from irritating my bandage site), that really burn and hurt. I'm quite stiff today, like the stiffness I've had in my hands since the beginning of the IVs has shifted through my whole body now, and my torso is sore, especially my lower back and abdominal area (feels rather like menstral bloating/cramping, but I had a hysterectomy a year ago, so know it's not that). Naproxen has reduced much of the pain and even a bit of my stiffness already this morning and I'm drinking a lot of fresh water to try to flush out the rest. I feel "puffy" and actually gained about 3 pounds yesterday, but am amazed that even with these things, I feel measurably better this morning than I do many weeks even several days after infusion. I am hopeful that maybe this last third of treatment will let me begin to see why so many other patients have found such benefit from IG!

Random Notes to Share:

- If you have been reading my blog for a while, you know I have a special place in my heart for identical twin girls, Addi and Cassi Hemple. These sweet 5-year-olds right here in Reno fight Niemann Pick Type C disease, a fatal cellular cholesterol disease that is often referred to as the “Childhood Alzheimer’s” and have lost many skills already, including the ability to talk. What makes the girls' case even more unique is that they have been fighting other unidentified health issues since 2005. Their mom, Chris, has maintained for a long time that she believed there to be an underlying issue with their immune systems, not directly related to the Niemann Pick Type C. Amazingly enough, these girls also both tested positive for XMRV and their non-Niemann Pick C symptoms are all consistant with neuro-immune illness. When I began following their story a few years ago, I had no idea that our worlds would end up intersecting on such a personal level!!! Read more about Chris' theory of Cholesterol's roll in XMRV.

- Yesterday, during the infusion, I was watching an interview on Fox and heard about the Manhattan Declaration. This "Historic Declaration on Christian Conscience" has been written by more than 125 Orthodox, Catholic & Evangelical Leaders and has already been signed by more than 50,000 supporters since its release on Friday! I want to take more time to really explore what this document is all about, but as I understand it, the basic premise seems to be a group of Christians who are committing themselves to fight for three basic principles - sanctity of human life, dignity of marriage as the conjugal union of husband and wife, rights of conscience and religious liberty - and coveneting themselves to uphold these areas even if/when our government makes laws to the contrary. I believe the intent is a promising to go as far as civil disobedience in the effort to obey God rather than man, if our government should make it come to that. Very interesting!

- I will be placing a Gurrlie Girl jewelry order Tuesday, Dec. 1. I have yet to make a final decision, but there is a very real possibility that this may be the final order I place as I am considering letting my GG consultantship expire. If you have had your eye on something and been holding off on ordering, you might want to consider Christmas shopping now. Feel free to email me with order questions - jsaake AT yahoo DOT com. :)

- Affordable Mineral Makeup™ has become even more affordable! In response to current economic struggles we all face, the owner of AMM has reduced prices so that all 5g sifter jars are now priced under $7, even our exclusive lines!

- Not sure if I will get a chance to post again later this week, so I close by asking you, "What are you thankful for?" My list is long, ranging from God's grace in salvation to my miracle family to employment for my husband and good insurance and medical care. That's just scratching the surface; I am truly blessed! I would like to hear from you about your blessings, even through the struggles, as well. Please share in the comments field here!

Tuesday, November 17, 2009

Christmas Shopping Bargain!

Then The Body Shop is currently offering holiday Grab Bags that promise to have at least $50, and up to $75, worth of products in each bag. They are selling for $15.

I am a member of eBates, an online shopping rebate program. Right now eBates is offering a 10% rebate for all The Body Shop purchases made through their link.

There is a limit of 2 grab bags per customer. If you spend $50 on their website, standard shipping is free. But then I happened across the coupon code WEL103 that gives FREE shipping on any size order.

I placed my order on my Discover Card that is currently offering a double cash back bonus for online puchases between now and Christmas! So, my total for 2 grab bags (anywhere from $100-$150 worth of stuff I can use for the Christmas gifts) cost me just $32 and some change (I did have to pay sales tax, thus the $2+). I'll get 10% of the $30 purchase price back from eBates, and get cash back rewards from Discover too, so in the end I'll have spent around $25 for the whole thing!

The Grab Bags go fast, so if you are interested you can use the free shipping code of WEL103 and go right to The Body Shop's website. Or you can stack your promotions like I did by joining eBates through my link (we each automatically get $5 into our eBates accounts if you join and make a $20 purchase through their links within 90 days) to take advantage of your 10% rebate too.

As for credit cards, I go to the Discover Card website on a monthly basis and check what special offers they have going. While we always get cash back on our Discover purchases, most of the special extra rewards are not automatic, but can be easily requested on the credit card website through opt-in options. It's well worth the minute it takes me to log in, look around and enter the extra programs that often offer additiona 5% cash back or something similar.

Hope this gives someone a fun Christmas. My eBates referal link is http://www.ebates.com/rf.do?referrerid=dlY13lnuPOHMBICJyYWAUg%3D%3D if you need it. :)

Thursday, November 12, 2009

Friday, November 6, 2009

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}}}

Tuesday, November 3, 2009

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)

Friday, October 30, 2009

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.








Monday, October 26, 2009

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.

Friday, October 23, 2009

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.
.....................................................

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)

Thursday, October 22, 2009

Makes My Kids Laugh

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

Monday, October 19, 2009

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.

Sunday, October 18, 2009

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!

Friday, October 16, 2009

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.

Saturday, October 10, 2009

Happy Memories

After my post earlier today about tears, I'm thankful to share some happy memories. All our pictures from our trip to Monterey are now live on our RV travel blog. Enjoy!
P.S. Even if you visited earlier this week, there are a lot of new ones just posted tonight.

Tears Today

The mountain-top emotional high of finally having answers has led me to exhausted tears today. Don't get me wrong. I'm still so amazed and thankful about the discovering of XMRV and it's link to CFS / XAND. I am still every bit as thankful for the diligent work of the Whittemore Peterson Institue (WPI).

But today the tears finally come. Tears of thankful release after years of pent up frustration over lack of answers. Tears of exhaustion on all levels, from physical to emotional. Tears of feeling overwhelemed at the road ahead - it feels like the past 19 years of my illness have simply been walking the road to find the starting line, and now that we've finally found it, now there is still the whole marathon to run ahead.

What have I exposed my family to? What will be the long term impact for all of them because of every decision I've made thus far? I'm glad I was blistfully ignorant when I choose to marry my husband (and obviously to engage with him in a sexual relationship) or when we set out against the uphill battle of infertility. I was ignorant of the fact that I am positive for XMRV (and yes, I was part of the test study, and yes, I did test positive). I'm so glad I didn't know, when I choose what I believed to be the healthiest possible choice for my babies, to breastfeed them, that the retrovirus XMRV is passed through bodily fluids.

Had I known, would I have made any different decisions? That's an impossible question to answer, for I look at the 4 most precious loves of my life, and I cannot imagine any different path than the one we chose; I cannot imagine not having any of them or the wonderful memories we have built together. So I'm thankful I was never in the position to make that choice, though I did try to break our engagement long ago (because of my fears over my health) and my husband would not hear of it, so for the question of marriage, I know he has no regrets and I find that so amazing! I do find myself grieving anew Noel, Joel and Hannah, our three precious babies who did not survive to live birth, and wonder again, with this new information, what role my health played in their tragically shortened lives.

For those earlier on the path than I am, I feel for you in those major life decisions that still lay ahead of you while so much unknown still lies on the table. I am very thankful to know that XMRV is not airborne nor is it passed through casual contact such as touch. While I can't help but wonder, and we obviously need to pursue testing for them, we do not even know for a fact at this moment that any of my family members will even test positive for XMRV. (If they do, that will be their story to tell, not mine, so I will not be posting medical information about any of them unless they some day ask me to.) It is simply the very fact that they need to be tested at all, because of their intimate relationship to me, that breaks my heart, and for that I also find myself in tears today.

If I have cause them harm already by what I did not know, what can be undone by what we discover now? I have to see this whole "starting line" as a wonderful window of hope, not only for me and the millions living with active neuro-immune illness already, but also for those who may have been exposed through our ignorance, that they might be spared our trials in the future because of where we stand today! Should XMRV prove to be the underlying cause of fullblown CFIDS and even possibly other neuroimmune conditions, then this discovery could mean a significant chance for a normal life in their futures!

It's so easy to feel undone, overwhelmed, anxious about all the what-ifs and could-becomes. Instead I simply must take one day at a time, watch this process unfold, and pray for great wisdom for the wonderful people who have dedicated their lives for seeking our answers and offering us hope. Tears come with the territory of CFS / XAND. My hormones and emotions can take wide swings and fluctuations by the very nature of my illness. Today is a tearful day and that's just the way it is.

Friday, October 9, 2009

More About XMRV and CFS

This article at http://www.oslersweb.com/blog.htm?post=638469 was so helpful in helping me sort through some of the rumors and "backstory" I've heard over the year about Chronic Fatigue Syndrome research, the CDC and various CFS organizations. It highlights what a huge breakthrough this is and why. I might not agree with all of the author's word choices, but her overall message really resounded with me.

I woke up yesterday morning with blurry vision (something I've been struggling with, but much more intense than normal) and in so much pain that I could hardly move without tears, couldn't let my kids even touch me (and we normally are big snugglers in the morning). It took a full hour and a half after pain meds before I could move enough to even get out of bed, then I was still in a lot of pain all day long. My dad had to drive the kids and I to their homeschool co-op and I had to use my big wheel chair that I haven't broken out in months (usually I use the smaller "transport chair" even though we refer it it as a "wheel chair" too). Don't know if this was finally the backlash from my trip, or still recovering from the scary reaction I had after Sunday's IV, or "just becuase".

I'm still hurting more than normal today, but significantly less than yesterday and my brain seems to be less foggy than it was when I was grasping for words and concepts continually yesterday. My vision is better again today, but this reminds me that I really need to get in for another eye exam, though I really have the feeling glasses aren't going to be the whole fix here and that I'm overdue for another MRI and brain spec scan.

Emotionally I'm on a "high" with the news of this research breakthrough, but that caused me to stay up til after 9:30 reading all over the internet, so I'm paying for my late night now and hope I don't have an additional "crash" as the adrenaline from the excitement begins to wear down. But how could I be anything but excited about such amazing and potentially life-changing news!

Thursday, October 8, 2009

HUGE NEWS for CFS research!!!

Today's announcement of the discovery of the XMRV retrovirus' link to a debilitating neuroimmune disease that affects more than one million people in the United States, Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS), is of particular personal signifcance to me, offering such hope for answers and eventual development of reliable treatment for those of us living with neuro-immune illnesses like CFS.

I will be posting more on my own involvement with this research study and why I am so excited in coming days (today has been a very bad day for me physcially, and I'm just not up to posting much at the moment) but in the meantime, please find out more about this amazing breakthrough research at http://www.wpinstitute.org/xmrv/index.html and be sure to read through the excelent FAQs they have posted for you there on the Whittemore Peterson Institute website.

Other links related to this research:
NIH press release

95% of ME/CFS Patients Positive for XMRV, with More-Refined Test

Virus Isolated in Chronic Fatigue Sufferers

More links to come...

Wednesday, October 7, 2009

Insomnia & Hives

I've been WIDE awake for the past two hours. Feel drained and exhausted and want to sleep, but not happening. Finally got up in hopes of letting my hubby get some sleep as I've been flipping and flopping like a fish!
Also have a few hives. Just small ones, but SO itchy. Noticed the first one inside my elbow just as I was falling asleep last night, now I have one on the oposite hand and one on my side. Three doesn't amount to much, but they are kind of blistery looking and I've been running a fever this week, so don't know if this is something triggered by the IG or it's own little viral bug or just another flair of my crazy immune system...

Tuesday, October 6, 2009

IVIG 9, Our Freezer Mess and Trip News :)

Our trip was wonderful. All the updates are now live at Adventures in an RV and pictures should be added by the end of the week. We came home to find the power out in our garage and all the food in our "outside" freezers lost (we had been stocking up on sales and had a lot of frozen meat, so it was a significant loss) and a horrible mess and smell to deal with as we cleaned it all out. My mom came over for moral support and we documented the whole clean-up process with a camera for our insurance claim. In the end we had to throw away two large garbage cans filled to the brim with stinky, rotting, fly-swarmed food. Knowing how many people are struggling to put food on their tables at all right now, it was heartbreaking to see such waste, but we are thankful that our home owner's insurance is going to cover $500 of our losses.

Physically I did surprisingly well on our trip, I think in large part due to the IVs. Usually I have IG treatment ever 7 days (on Sundays), feel pretty bad the first day or two afterward, then often start feeling noticable improvement by about Thursday or Friday - I still wouldn't go so far as to call these "great" days, but many weeks they are encouragingly "better" days toward the end of the week.

Before our trip I had infusion #8 on Friday, just 5 days after #7, and it was a miserable experience, lasting nearly 8 hours and putting me in bad shape on Saturday and even the day we left, Sunday. But I was alseep before 9 just about every day of the trip (some nights as early as 7:30) and napped in the big bed in the back of the RV ever time we traveled, so between all the sleep and the ability to not be strapped into the confines of a car seat, I did not suffer many of my common phyical issues with extended travel. We used my wheel chair a lot and specifically chose not to do certain things in hopes of being able to more fully enjoy the things we did attempt. I only felt truly let down by my body once, when I was unable to join my family on a hike to try to get to the California tunnel tree, but overall, we just took it slow and focused on having fun as a family. Even with my pressure point bands and bonine, I was pretty miserable (nausia, feeling like I just couldn't take another moment in a moving vehicle) by the time we got to Monterey on Sunday afternoon, but that was the worst of it.

I did not have IVIG #9 until this past Sunday, putting 9 days between infusions this time around. Not only did I have a couple of extra "better" days at the end of the week because I didn't have to jump right back into another infusion so quickly, the infusion itself took only 2 1/2 hours with no complications during the IV!!!

While the infusion itself went quite well, I did have a pretty scary reaction after coming home (about 5 1/2 hours after my benadryl and maybe 3 hours after the end of the infusion) where I began struggling to breath to the extent that we were debating between going to the ER (but were afraid they really wouldn't know what to do with me not understanding my whole history) or simply calling 911 if it got any worse. After a double dose of my inhailer and another round of benadryl, it took about about 45 minutes for the frightening episode to begin resolving, allowing me to breath more freely again. In the meantime I was dealing with violent shaking (I think from the albuterol), ended up eventually hyperventalating (actually what I think finally allowed my body to settle down as I super-oxygenated), my PICC line started bleeding again (got that stopped pretty easily with a sand bag pack) and I had to fight from throwing up due to sever nausia.

The whole time I just kept thinking, "What I wouldn't give for a home oxygen tank right now!" as this felt like almost an exact duplicate of the reaction I had had during one of my early infusions when we first realized the need for oxygen through the infusion process, but without the safeguard of medical care readily available. My primary care physician suggests that it may be because we did such a fast infusion (the only other times I've been able to do it in 2 1/2 hours have been with saline co-pumping, something we learned is a medical no-no) and that next week we slow it back down and that I take zyrtec the morning of the infusion along with the benadryl just prior to infusion. Zyrtec is 24-hour acting and is a different kind of antihystimine so can be paired with the benadryl. All I know is that I hope I don't have another reaction like that one! Only 3 infusions left, they we evaluate if I go for another 12-week round or not.

Saturday, October 3, 2009

Our Vacation

I've posted daily updates from our trip at http://classicRVadventures.blogspot.com/. Would love to have you "journey along" with us and leave your comments, maybe with childhood memories of your own. :)

Friday, September 25, 2009

IVIG 8

Just home from 8 hours at the infusion center! UGGG My longest infusion ever. Don't think my body liked the fact that I was doing infusions just 5 days apart instead of the regular 7 and we had to take it dreadfully slow, even with all the benadryl, oxygen, etc. Exhausted and headed to bed.

We are supposed to pick up the RV tomorrow, but I'm not nearly done packing, so we won't be leaving town until Sunday.

Monday, September 21, 2009

IVs, Stanford, travel, homeschool, Dance fundraiser

Wow! I just keep falling farther behind in posting health updates, so I'll do a quick overview and you can skim for the topics that interest you most. Each topic here probably should be it's own blog post, but I'm just not up to that, so I'll bold the topics and you can pick and choose what you read. :)

Weekly IVs 5 and 6
I've had 3 more IVIG infusions since I last posted about them in any detail, infusions number 5, 6 and 7. The 5th and 6th both went amazingly well. We thought we had found just the right combination of things to keep me from being reactive:
- IV drip of normal sailine during entire transfusion:
- 50 mg benadryl beforehand
- excedrin beforehand
- oxygen during the entire infusion
Both infusions done with this combination were over in only 2 - 2 1/2 hours with only minor discomforts!!!

PICC line issues
Then my PICC line decided it needed to start bleeding this week. I went in for midweek dressing changes on both Thursday and Saturday with blood dripping down my arm. Not fun. :( Thankful the PICC continues to be serving its purpose well and there is no sign of infection. The skin around it is getting rather chapped from the dressing changes, but we packed it really well with the weight of a heavy sandbag after yesterday's dressing change, and so far no signs of leakage yet today. (It had begun oozing last Monday morning after the IVIG #6 infusion on the prior day.) Hopefully we are past all that now.

Yesterday's IVIG (#7)
Well, maybe you caught onto the fact that I only mentioned 2 of the 3 past IVs going so well and that we had thought we had the right concoction? Yesterday we got there (Rick has a tummy bug, so my parents took me) and had a different nurse than we had for two prior treatments. Gave her the rundown on what was working and she informs us that IVIG is never to be dosed in conjunction with anyting else, including saline. Saline can interupt some of the effectiveness of the IVIG. Uggg.
So she agrees to give me a heafty dose of saline before hand to get me really hydrated, still lets us do all the other stuff, and will follow-up the IG with more saline, but even pulls out the fine print on the package paperwork and points out that she can't run the saline with the IG. I actually did realatively well with no dramatic reactions, but it made for another LONG infusion, getting there at 1:30 and barely finishing up before they turned out the lights at 7PM! Mom stayed with me the whole time so it was nice to have the company, but it was discouraging that after we thought we had it all figure out, we had to take such a backward step. Thankfully though, still no major reactions, so I'm striving to be content in that. And despite all the frustration and inconvience, I am beyond thankful to be receiving this treatment and life-giving medication at all!!!

Our trip to Stanford
I guess it's already been two weeks since our trip to Stanford. We left early on a Monday morning, after just having had the IVIG the afternoon before. I was throwing up by the time we reached Auburn (about 2 hours drive) even with a double dose of motion sickness meds and my pressure point "sea bands". I was very uncomfortable and exhausted. Fell into bed as soon as we got to the hotel and only got up again for a quick dinner. My family went sightseeing on Tuesday so I had the quiet hotel room to myself and slept a good portion of Tudsay and quietly read between naps - that felt wonderful to have such quiet!
Wednesday morning we had to be to Stanford by 8AM. Dr. Montoya didn't make it in to see us until about 9:30, but then he spent a full hour and a half with us! We were stunned that he took so much time. We really didn't learn anything new there, basically just confirmed that everything we had already been doing with Dr. Peterson was exactly what he also felt we should be doing. I guess our main "take away" from that appointment was Rick's better understanding of how stress negatively impacts my body and how basically anything and everything can cause some level of stress in either the emotional, mental or physical areas and that we need to limit as much of any type of these as we can. We came home and had to take a hard look at our lives and have cut out many commitments this year. As I posted in my Cutting Back thread, that includes my time spent on the internet.
I did better on the trip home, but have had a hard time getting out of bed each morning since the trip and my muscle twitching that had noticably diminished since starting the IVIG treatments has come back pretty significantly ever since the trip. That kind of travel is just SO hard on me. It's ironic that I'm told to "cut stress" but in order to get that advice my insurance sends me on a trip that is very stressful on my body!

I Hope You Dance fundraiser
Our highlight of last week was getting to attend the Whittemore Peterson Institue's I Hope You Dance fundraiser. Thank you, again, to all who enabled us to attend!!! I went in my wheelchair and did great for the first part of the program, but with so much stimulation (music, 500 people eating and talking, lights, sounds) I was pretty overwhelmed after about the first speaker. We did hear some very exciting things about upcoming announcements on Chronic Fatigue Syndrome research, so keep your ears open to the news in mid/late October when significant medical reasearch hits press release stage. I'm so hopeful about what's unfolding right here in Reno!

Homeschooling
We are still homeschooling this year. People ask me how we do it with my illness, and my answer remains that I simply cannot immagine trying to do a traditional school schedule with this illness! We have a flexable schedule, can start as late in the day as my health dictates, we can "bedschool" whenever we need to and I don't have to pack lunches or drive carpools. When you throw homework into the mix, I figure I would be putting just about as much effort into "schooling" my kids at the end of the day when everyone's already spent as I already do when I have the joy of working with them fresh in the day. So for me, homeschooling's really the only viable option I see right now, and I've very thankful for the opportunity to learn with my kids each day!
We are using My Father's World with Big J. in 5th grade, R in 1st. and Little J. still just coming along for the ride. :) The kids are also involved in Eagle Co-op and loving their classes there!


RV Trip
This week's going to be interesting. Rick's got a tummy bug, I'm trying to get back on my feet from yesterday's IV, then my next IV actually comes around on Friday morning. (I typically start feeling "better" from an IV about Thursday, so this week there won't be much room for rebound.) On Saturday we pick up our RV for our long-awaited family vacation. This has been in the planning for many months, since long before IVs or the Stanford trip or anything else and will be our first ever family vacation with all five of us and no one else. We are excited, but I must admit to feeling nervous too. This week Rick will do all the shopping while I work on packing. (Both my mom and a friend have offered to come help with the packing and I'm definately taking them up on their offer!)
I'm so praying this will be a time of wonderful family memories and that Rick and I will be able to be a true blessing to our kids next week without compromising my health farther. It's one of those decisions that we know comes with risk, and yet it's a choice we are making based on the needs of our whole family, for once not just making our family flex and stretch around my health limitations as they so regularly must do. We are going by RV so that I can rest in bed as much as I need to during the travel time and we are keeping our plans very simple, intentionally not trying to fit in visits with friends along the way or pushing through an activity-laden agenda. We'll be packing ready-to-eat foods and will do our best to simply "be" and focus on enjoying one another. Feel free to follow our adventures on our travel blog next week.
I'm praying my handcap license tag gets here this week. (I've had a plate for years, but as we won't be taking our van, I won't have handicap parking access if the window hanger tag doesn't come on time.) We realized on our trip to Stanford (Rick's parents drove us, so not our own vehicle) how important this tag would be for our trip, so my primary care doctor requested it for us the very next day. After her knee replacement surgery my mom had her tag within a week, so I'm hopeful it will come on time. Would you please join me in this specific prayer request?

Saturday, September 19, 2009

Hope in the Shadows

Have you ever heard someone describe a time of trial as, “living under the shadow of [xyz]”? My shadows have included infertility, grief, depression, chronic illness and more. I'm sure you can plug in your own "xyz"s; maybe cancer, abuse, loneliness

Job and the Psalmist talk of “the valley of the shadow of death.” Shadows impress a dark picture of gloom and heaviness in my mind.

Hope demands I give shadows another look... [To read the remainder of this article, please visit (In)Courage where you can also enter to win a copy of my book, Hannah's Hope.]


Keep scrolling here for a great list of verses that reflect God's sheltering shadows in my life.

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One way God seems to work in my life is through “theme word seasons,” specific life lessons He wants to drive home with me and situations that bring those themes to light over and over until I finally begin to grasp a small portion of what He longs to teach me. Wait resounded in our hearts through the loss of our business and the struggle for my husband to find a new career that truly fit, all in the midst of infertility's endless cycles of hoping and hurting, wanting and worrying, coping and crying.

Waiting has given way to new horizons, a series of theme seasons too numerous to list here, but with one of the most recent being Hope. And then to Hope, God’s spent this year adding the active pursuit of Joy to my life as well. Here are some of my favorite resources from these three themes:

Wait:
- Hannah’s Prayer Ministries offers support through fertility challenges, including infertility or the death of a baby at any time from conception through early infancy.
- A Graceful Waiting by Jan Frank
- The Wait Poem by Russell Kelfer (Truly beautiful book, with a written message even more powerful than the photos! This poem was life-changing for me and has been impactful in many lives.)

Hope:
- Out of the Valley Ministries, Inc. Postpartum Depression Support
- Grieving the Child I Never Knew by Kathe Wunnenberg
- Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss by me, Jennifer Saake :)

Joy:
- Rest Ministries provides support in the face of chronic pain and illness, including National Invisible Chronic Illness Awareness Week each Sept.
- Rain on Me: Devotions of Hope and Encouragement for Difficult Times by Holley Gerth
- The book of Philippians, written by the apostle Paul.

"Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies” Philippians 4:8-9. (MSG)



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Verses that reflect God's sheltering shadows in my life:

“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)


“I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.” Isaiah 45:3. (NIV)

“The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned” Isaiah 9:2. (NIV)


“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light” Matthew 11:28-30 (NIV)

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31. (NIV)


"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me" Micah 7:7. (NIV)

"We wait in hope for the LORD; he is our help and our shield" Psalm 33:20. (NIV)


"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God..." Psalm 40:1-2, (NIV)

“I am the man who has seen affliction by the rod of his wrath.
He has driven me away and made me walk in darkness rather than light…

“He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead…

“Yet this I call to mind and therefore I have hope:
Because of the LORD’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness…

“For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love…

“You came near when I called you, and you said, ‘Do not fear.’
O Lord, you took up my case; you redeemed my life…”
- from Lamentations 3 (NIV)

Friday, September 18, 2009

Cutting Back

Here's the message I just posted to my Facebook account:
Due to health limitations, I will be dropping out of most things on facebook and other forums and social networking sites I have been part of. You may see me post an occassional update here, but I won't be reading much and may only very rarely reply.

My goal is to spend only about 10-15 minutes online each day, including emails, business. twitter, everything! Since I typically spend up to several hours per day online, this is a DRAMATIC change for me and will be hard to stick to, but for the sake of my family and trying to restore my health, it is something I need to commit to.

My main focus will be keeping up my 3 blogs:
http://www.HarvestingHope.blogspot.com - encouragement for life's trials
http://www.InnerBeautyGirlz.com - beauty tips and tricks, mineral makeup info, sales and discount codes
http://www.InfertiltiyMom.blogspot.com - my most personal blog with reflections on infertiltiy, loss, adoption, ongoing health updates related to Chronic Fatigue Syndrome ( CFS / CFIDS / ME/CFS ), motherhood, homeschooling and my life in a nutshell

Don't presume I know what's happening in your life just because you posted it to my facebook page. You can leave comments for me at any of those blogs and I should see them even if I am not able to reply. I do not want you to feel that I am abandoing my friendships, I'm simply trying to get healthy and this is part of what it's going to take. Thank you for your understanding.


The bottom line is that I need to work on getting healthy. At my appointment with Dr. Montoya at Stanford, we spent a full 90 minutes talking with the doctor. One thing he emphasized was that stress, of any kind, can worsen my illness. He talked a lot about emotional and mental stress and we concluded that I spend way too much time on the computer. He challenged me to take a year and cut out absolutely everything I do not have to do, in hopes of gaining another 40 years of better health if I can help hault the progression of permanent cell damage in my brain and body now. (For sanity, I still "need" to write as it is one of my primary coping skills, so I don't consider blogging to be totally optional right now, but it needs to be a tool I can use when I need it and not something I have to do on anyone else's demands or timeline.)

Didn't want to "drop off the planet" without giving some explanation, but I will be in a lot less direct or personal connection with many friends for a season. I may or may not post frequently and when you do see a post it may be something I've prescheduled days or weeks in advance of when it actually posts here, so just because you see a post pop up on a blog doesn't even tell you that I was or was not online that day.

Sunday, September 13, 2009

National Invisible Chronic Illness Awareness Week

I will be presenting at noon (Pacific) this Tuesday on the topic of Coping with Crisis on Top of Chronic. Follow link for archived version. :)

SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.

In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.

Well known Christian authors who will be presenting include:

• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009)
• Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008)
• Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009)
• Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008)
• Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005)
• Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005)
• Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004)
• Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)

Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”

Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”

Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”

Rest Ministries extends their outreach about invisible illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.

Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, “It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week, which they sponsor annually.”

One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.

See www.invisibleillness.com for more information or www.restministries.org for the sponsor of this event, Rest Ministries.

*Source: Chronic Care in America, U.S. Census Bureau

Friday, September 11, 2009

Hope You Dance donation Winners, Thank You!

My 5th IVIG went very well; much better than anything before! I'll post details later, but I'm exhausted right now as we headed out of town early Monday morning and got home late Wednesday night. I owe you a long, newsy post about that trip to see Dr. Montoya at Stanford, but it too will have to wait as I'm just so done in right now...

I do want to take a moment and thank everyone who contributed to "help me dance" and fight Chronic Fatigue Syndrome. We received about 95% of the $500 we had set out to raise for the Whittemore Peterson Institute and will be attending their I Hope You Dance event tomorrow night. I'll probably be in a wheelchair and may not be able to stay very late, but I'm so excited to have the chance to go at all! Thank you so much for not only making this personal dream of mine possible, but for helping further the research to find answers to this theiving illness!

The winner of the Gurrlie Girl jewelry set (and I threw in a bonus bracelet for the amazing generosity of your gift) is Virginia T. of California. Your package is on its way and should be there by the middle of next week.

Ruth L. of Nevada is the winner of the Affordable Mineral Makeup™. Ruth, please visit www.InnerBeautyGirls.com and email with your $30 selection. :)

Everyone else who contributed in any way should have received a thank you note from me (either via email or postal mail). If you haven't gotten yours by early next week, please let me know so I can be sure your donation was properly received and processed. Thank you all so much!

If you don't hear back from me again until sometime next week, I'll be able to update you on IVIG 6 and the fundraiser all at the same time too. :)