World Rare Disease Day

Today is World Rare Disease Day. Did you know you can help simply by wearing your blue jeans? Check out my link at http://HarvestingHope.blogspot.com/2010/02/hope-in-your-jeans.html for more information. :)

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!

Fiction Fridays: Sharon Souza

Every Good and Perfect Gift by Sharon Souza is an emotional and fascinating read. While infertility plays a staring roll early on, it becomes a back story to the main plot line (focused on early-onset Alzheimer's) as the story unfolds. Readers who have lived infertility will resound with the fears and frustrations and will be delighted by the depth of loving friendship and self-sacrifice that draws two couples together in the pursuit of a single child. While I found a few technical flaws with the medical side of infertility presented in this story ("decongestant" cough syrup will dry up cervical mucus, not aid in its production) many of the experiences, questions and emotional processing of the characters is spot on.

Stopping IVIG

There were only two left, but after 22 IV infusions, I just can't do it anymore. My body is done in, overtaxed, highly reactive. In the past 3 weeks I've had about 14 days where I haven't been out of bed more than 1-4 hours per 24, most of those days were in the range of 1-2 total "up" hours taken in short chunks throughout the day. Hives won't stay calmed. I'm short of breath and wake up struggling to breath at all. I'm in pain. I'm exhausted.

For whatever benefit the IVIG might offer, for me the cost of ongoing treatment is just too high. What good does it do me to avoid illness (i.e. viruses, bacteria, etc.) if the reaction to the treatments is illness (bedridden days, hives, breathing scares)?

I just got off the phone with my primary care doctor's office and with her blessing, I will be calling the infusion center to cancel my last two IVs! I don't think the reality has really hit me yet, but I'm so relieved that this chapter of the journey is over. I still have insurance approval for two more infusions, so if at some point down the road we see a reason that I should go back for another treatment or two, that remains a viable option, but at the moment it isn't in the plans at all.

I'm not quite sure where we will go from here, but for now I'm just going to work on being still and trying to get my feet back under me so that I can pick up a semi-normal pace of real life again. Thank you for all the cheer-leading, love, encouragement, support and prayers as you have come along side me through this entire IV adventure that started way back last August. It's been a very long journey and I have a whole new level of understanding and compassion for those who live with these kinds of treatments on a continual basis.

It still doesn't seem real, but I'll write it again in hopes of making myself believe it - I'm done!!! :D

One Thing

This morning I read There's A Hole In My Bucket by Annie Downs over at (In)Courage. Wow! I instantly thought of my "hole," how my entire world is revolving around waiting for medical test results for my family, dealing with my own health issues and getting so wrapped up in "advocacy" for others that I'm wearing myself much too thin.

This isn't the first time I've tried to "stuff straw into a hole" in my heart, thinking that if just "one thing" were different (like, "If only I could get pregnant..." during our infertility years) that all would be well. Striving to change my circumstances from anything other than the plan God has for me seems to be an ongoing struggle in my life. :(

You may remember that I started this year feeling like the "theme word" God had in store for me was to be "peace". While I can feel His peace in so many ways, I know it is something He's still working on my heart to bring to pass. In response to Annie's post I wrote:

Thank you so much Dear Annie, Dear Annie, Dear Annie.
Thank you so much Dear Annie, Dear Annie, Thank you! :D
(Hope you can hear that put to music and that it actually puts a smile on your face.)

I've been quite fixated on a hole for months now. Every time it looks like a straw is available to plug it, I find out the straw's too long, ax is too dull, or the bucket springs an additional leak! My whole world is revolving around the patching of this hole and it keeps me up at night, makes it hard to breath, makes me grumpy toward my loved ones.

For years I've been drawn to the "One Thing" passages of Scripture. I've even jotted notes towards writing a book on the subject. But until reading your post, I somehow managed to avoid realizing that I was replacing the One Thing most important in life with the one thing I'm so fixated upon.

I know myself well enough to know God's going to have to do a lot to help me pry my reluctant fingers loose of my bucket and let Him have full control over the leak. But at least now that I see it with fresh eyes, we can work together toward the goal of putting my priorities back in order. It is going to be a painful process, but in the end it will be much more peaceful than trying to patch this up myself.

"One thing I ask of the LORD, this is what I seek: that I may dwell in the house of the LORD all the days of my life, to gaze upon the beauty of the LORD and to seek him in his temple." Psalm 27:4 (NIV)

"...but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her." Luke 10:42 (NIV)

"Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus."
Philippians 3:12-14 (NIV)

Fiction Fridays: Marlo Schalesky

Empty Womb, Aching Heart: Hope and Help for Those Struggling With Infertility by Marlo Schalesky is a fictionalized compilation of many real-life infertility stories, including my friend Julie Donahue's real life adoption story (see the "Mom2Ways" button on my sidebar for a link to Julie's blog). Spanning all aspects of fertility challenges. The short stories are fast reading, realistic and great at getting to the emotional and spiritual heart of each challenge.



Have you found a book that captures the heart of your fertility or loss journey through the use of fiction? I would love to hear about your favorite reads!

3 IVs left

I'm feeling grumpy tonight, so read at your own risk. ;)

I've already gotten past 21 out of 24 IVs. I have another one tomorrow and then only two more. Then end is so close now! I should be feeling very encouraged, but instead I find myself absolutely dreading tomorrow. I don't think the fact that it will be Valentine's Day has anything to do with it, I'm just really tired of these things. I want to be done. I don't feel good. I'm not seeing positive results that they are making me feel any better (though there is some impressive lab evidence that they are at least temporarily doing positive things for my body according to IL8 inflamation markers), but I have such nasty reactions to them and I just feel so yucky from them and I don't want to keep going through this.

I had my last one two weeks ago, felt actually pretty good the day immediately after IV (usually that's my worst day, so this was a very pleasant surprise), but then have felt bad for all 12 days since and haven't had any "upswing" like I usually do toward the end of the week after an infusion. I still feel nasty and I have to start all over again tomorrow. I just want to crawl under a rock and hide rather than offer up another vein for IV puncture, strap on my oxygen tube and gulp down another mega-dose of Benadryl.

Thanks for letting me whine a bit and even more so, thanks for the prayers. I know we are almost done. I know God's got a purpose in all of this. I just need to take it one moment at a time and be thankful that I actually get to go in early tomorrow, thus will be home with my Sweetie earlier than usual too. I'm also going to take a few chocolate covered strawberries to my nurse, so it will be fun to brighten her day a bit as she is away from her sweetheart on Feb. 14 and babysitting me instead.

Fiction Fridays: Angela Hunt

Angela Hunt has written many compelling titles. While not directly related to infertility, both The Pearl and Unspoken were thought provoking for me. I would not advise reading either when feeling emotionally fragile, and since not written specifically for an infertile audience, there will be things that might not sit well.
The Pearl deals with the death of a child and a mother's depth of grief that drives to a splintered marriage and desperate measures including cloning.
Unspoken is a sweet story for anyone with a loving "Fur Baby" (animal/pet that is a stand-in child) in her life, though it does also relate a lot to grief (and has a subplot of miscarriage through another character). I'll warn you upfront that the ending is rather tragic.

I have never read The Truth Teller by this same author but believe it is a story about an infertile woman who is widowed and tries to still have her husband's child - as with any of Hunt's books, I would expect there to be a lot of plot twisting, no easy answers and ethically challenging complexity involved. Is this a title you have read? If so, would you recommend it? Why or why not? I would love to hear your thoughts. :)

Have you read any titles by Angela? How have you been impacted by this author's writing style? Can you suggest other authors who have tackled the challenging topics of infertility or loss in their fiction writing? Did they do a good job, or did their depictions of your experiences leave you wanting? Please share!

259 words

This story describing my journey in the spring/summer of 1994, started out at over 500 words. Even then I felt like I was leaving out important details, but I finally got it down to the exact 259. So here we go...

“I should drive across the median. I've failed at everything. They would be better off without me.” These mocking thoughts no longer frightened me.

My health failed first. I dropped out of school. Our business tottered on the bring of bankruptcy. Yet none of these were my greatest disappointment.

Two years of yearning for the fulfillment of dreams I had carried since my earliest memories left me disillusioned. “Lord, we are serving you in every way we know how. Don't you promise the desires of our hearts?”

I flung my Bible across the room. Remorseful, I ran to find it open to 1 Samuel.

“Not funny, Lord!” I hated Hannah's story. How could He put her through years of waiting, only to bless her with a child, then take back the thing she most longed for?

I sat down to read it again, to prove to God how cruel He was. What, God never demanded Samuel of Hannah? She gave him of her own free will?

Heaven broke through the hardness of my heart, not with an audible voice, yet with words that rang loud and true, “My child, you cannot treat me according to the gifts I choose to give or withhold. I AM worthy!”

I offered works in hopes of blessing. He wanted praise for the sake of love.

We lost our business. I never earned my degree. It was five more years before we held a living miracle in our arms. But I never fantasized about driving my car into another again.

Mary DeMuth recently sent me a copy of her new book, Thin Places. I knew it was a memoir, but beyond that really had no idea what to expect. So far I've only been able to steal away enough moments to read the introduction and already I'm enthralled. Mary describes thin places as "those times where the division between this world and the eternal fades; snatches of holy ground, tucked into the corners of our world, where we might just catch a glimpse of eternity." Check back here in the coming weeks (or maybe months - I'm a very slow reader) as I'm sure I'll have more to share about the book later.

In the meantime, I received an interesting invitation this week, asking me to share with you my own "thin place" story, a time when God burst through my life to remind me of His presence or reassure me of His reality. The story was to be exactly 259 words long. If you know my writing, you probably know that limited word counts are the hardest writing challenges for me! The above story was my response to the invitation.

Why such a specific wordcount? This is the retail price of a new Kindle, the contest prize for the winning essay submitted. Please join me for your chance to win a Kindle by sharing your thin place story too! (Head on over to http://www.blogtourspot.com/2010/02/thin-places-blog-tour/ for details.)

Sleep

I am having sleep issues right now. Spent most of last week in bed (probably sleeping at least 14 hours a day and actually in bed for about 22 hours most days). Was finally up Saturday morning, back in bed Saturday afternoon and through the night. Up Sunday, and even had friends over for a couple hours after church, then only slept a frustrating total of only 4 1/2 hours Sunday night (not for lack of trying - I went to bed around 9 and stayed there until daylight, but insomnia and pain had other ideas).

Yesterday I was "OK" through the day, out of bed most of the day, and even made it to my writer's group last night, a special treat I had not expected to feel well enough to be able to attend. But I could tell on the ride home that I had overdone because I found myself driving 50mph and still feeling like the world was whirling around me. I was actually getting quite scared about my ability to safely drive myself home even though it was less than 15 minutes from the bookstore to our driveway, but at that point my only other alternative would have been to pull off onto the freeway shoulder and that didn't feel very safe either as I was fearful I would plow right into the guard rail or not be able to navigate well enough to get fully out of the lanes of traffic. I am very thankful for God's protection of both me and the drivers around me and I will try very hard not to get myself into that kind of situation again, though that's part of the frustration of this illness, never knowing when my body will fail me. :(

There are an assortment of links I wanted to share today. First, Dr. Donica Moore, who has recently named as a spokesperson for the Whittemore Peterson Institute, wrote a great article last December about how XMRV Sheds New Light on Chronic Fatigue Syndrome, telling simply what CFS is and is not. For anyone looking for the basics, this is a great place to start.

Another couple of links deal with the story of Louisa Ball, a 15-year-old young lady living with "Sleeping Beauty Sickness" or Kleine Levin Syndrome. I share these not because there is any known link between Kleine Levin Syndrome and CFS or XMRV (though I would personally be fascinated to see if Louisa could be tested for XMRV), but because it pretty clearly describes my life in 1991/92 when I dropped out of college after struggling through 2 semesters where I basically just attended classes and slept. I moved back home, sleeping anywhere from 18 to 23 1/2 hours out of every 24 for several straight months. I have very few, very sketchy memories of that year and, like Louisa describes, even when awake, I wasn't truly engaged in life happening around me. My parents describe shaking me and yelling in my ear and being unable to wake me, my mom even near to calling 911 more than once, unable to tell if I was even breathing.
Even now, when I am in sleep mode, I can sleep for 14-16 hours, trying desperately to wake myself up, and unable to open my eyes, dreaming over and over that I have finally struggled to wakefulness, only to realize I'm still asleep and have to begin all over to force my eyes to open. The process of trying to awake can itself become exhausting! The only thing significantly different from my story and the bit Louisa describes in her interviews is that while Louisa struggles with weight loss, I gained weight rapidly during my year of near-constant sleeping and I am again struggling with weight gain right now, during this season where I'm in bed so much.
Here is Louisa's story:
MSNBC - Sleeping Beauty
and
Yahoo - Girl is a Real Life Sleeping Beauty

And finally, here is a link from K-Love radio about Chronic Pain and Illness. The brief radio interview and linked sites are all very helpful, and while I welcome you to explore them, I'm primarily tacking the link here for myself for future reference as I know I will want to explore these again. :)

Fiction Fridays: Rain Dance

Rain Dance by Joy DeKok (also a past Hannah's Prayer member, still living with primary infertility) is a compelling story about what happens when a Christian woman facing a childless future and a woman seeking an abortion are waiting to see the same doctor. The infertile woman feels like she could have been pulled from the pages of my journals! I know abortion is a sensitive topic, especially while facing infertility, but this book is amazing.



To find out more about Joy, her passions and other titles she has written, please visit her at JoyDeKok.com.

What hidden infertility/loss plots have you discovered in your fiction reading? Have specific books been helpful or hurtful as you have read? Please share your finds by posting a "comment" to this topic!

Still In Bed

I just can't seem to get my feet back under me.

Monday was a surprisingly good day overall, but that's been the only day since coming home from Stanford that I've been out of bed for the majority of the day. Simply going to my doctor for an easy appointment (and Mom drove) on Monday was apparently enough to tilt the scales and do me in for the rest of the week. I don't know if this is due to Sunday's IG (though usually I have a bad Monday and gradually gain ground through the week) or still fallout from the trip to Stanford or just a new (and might I add, rather unwelcome) relapse???

We are getting life accomplished, have had a remarkably good school week from bed, but I just can't be on my feet for more than a few minutes at a time before I'm shaking and totally drained. I've got to get out on Saturday and get some blood work done, but at the moment I'm doubtful about church or next week's writer's group, and am wondering how things will go when we start up weekly homeschool co-op meetings on Thursday afternoons, starting in just another week.

Today I'm focusing on just two verses:

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."
Matthew 6:34 (NIV)

"And my God will meet all your needs according to his glorious riches in Christ Jesus."
Philippians 4:19 {NIV}

Bubbling Joy

I feel like I'm a study in contrasts. I get discouraged, worn down, emotionally spent, but underlying all that, God's granted such a joy in recent months.

I saw my primary care doctor yesterday. I took in a two-page poem detailing the daily experiences of living with XMRV - it was brutal stuff and very "depressing" to read, but it was just my way of processing the physical "junk" that goes along with living with chronic pain and illness. (I'm not brave enough to share it all here yet, but maybe someday.) She read through the poem and sat there shaking her head, then looked up at me and said, "All this, but you always seem so happy!"

It would have been a great opportunity to say something about the Lord (I wasn't thinking fast enough to realize the open invitation when it was right there), but I pray I will have many more chances to live out for her the reality that it is the Joy of the Lord that's my strength, even when my body fails me so.

The trip to Stanford was productive, if for no other reason than that I became a catalyst to connect Dr. Montoya (Stanford) and Dr. Mikovitz (Whittemore Peterson Institute) as Stanford looks toward replicating WPI's findings. I was in tremendous levels of pain the first few days home from the trip and spent the greater part of last week down in bed, so travel definately hit me harder than anticipated this go round.

As for a game plan, we plan to finish out my IVIG treatments (I just did #21 on Sunday and will have them every other week for just 3 more treatments - yeah!) and then take a step back and wait to see what research unfolds in coming months. I'll be back at Stanford mid-May for follow up bloodwork (two months after final IG infusion) then I hope to participate in clinical trials with WPI as soon as they are available. In the meantime we aren't going to move forward with the anti-viral treatments right now since they are not proven to be of effective against RETROviruses and I really am not up to six months of chemo-like side effects right now.

IVIG 21 was fairly uneventful. Got my IV started in just one stick (had taken 4 pokes two weeks prior and bruises from those still aren't fully healed yet)and other than one blood pressure scare, I slept through a good chunk of the afternoon and didn't even hive out until yesterday. Yesterday I was in a fair amount of pain but was surprisingly energetic for a post-infusion Monday. I was thinking maybe I wasn't going to have a hard crash and recovery like most weeks, then it all caught up with me about 7 last night and I've hardly been out of bed since (it's now 10 AM) with my limbs feeling like dead weights hanging off my body and my head cloudy and groggy.

I guess the only other news is that we are testing my thyroid now because I've gained about 35 pounds in the past year and the scales keep climbing even when I try my best to eat healthfully. My thyroid has been tested many times over the years and results always come back "normal" so I'm only slightly hopeful that this will provide answers, but we shall see. If not, I'm going to push to see if I can get back on metformin (glucophage) as my weight was well-maintained over the 10 years I took it for PCOS. I was taken off it a little over a year ago, after my hysterectomy, and that's when the weight began to build up.

Kids had great birthdays and Little J. seems fully recovered from his head-first bounce off his sister's bed. He'll do lab work the end of the week to be sure the bruised kidney is fully resolved, but I'm amazed at how quickly he seems to be back to full speed!