CFS for a few minutes, harder than running marathon!

There's medical data to back up that claim too. Here's an interesting look at one researcher's theories about pain and fatigue processing. When you scroll half way through the article you will see two different sets of charts showing the difference between healthy people and those with Chronic Fatigue Syndrome, including the clinical results for pain and sympathetic nervous system reactors after 15 minutes of mild exercise by CFS patients and the same receptors in a healthy person after a 26-mile marathon.
Adrenergic and Sensory Receptor Expression on Leukocytes Increases After Moderate Exercise in Chronic Fatigue And Fibromyalgia.

The activity of a receptor called Type A that’s been implicated in pain doubled in ME/CFS patients who also had FM and showed no increase in healthy subjects at all. Sympathetic nervous system (adrenergic) receptors that detect SNS activity were increased 2-6 times.

How active are these receptors? These sensors, not surprisingly, get really active in marathon runners but they still never got as active in marathoners (after a 26-mile run ) as they did in ME/CFS/FM patients (after a mild 15-minute exercise period).

Wounding Words

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

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

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

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

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

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

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

Give-Away for my book

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

Fiction Fridays: Karen Kingsbury

Karen Kingsbury has too many fertility-related stories for me to even list. Visit her website (where you can read her own adoption story!) at KarenKingsbury.com

I'm currently enjoying the Red Gloves Collection. So far my favorite title there is Gideon's Gift. It's not an infertility story (well, one daughter is an only child and there is implication that the parents wanted more) but does involve adult loss and the grief journey. Incredibly touching!



What's your favorite Karen Kingsburry title (related to fertility challenges or otherwise)? Why? Please share!

Funny Fours

My four year old is bringing so much joy to my heart today. I think God custom-drilled those dimples just where he knew they would have the most heart-melting impact. Add to that the funny things coming out of his mouth and I can't help but giggle as I squeeze him. Thank you, Lord, for my beautiful miracles.

This morning he came back to talk to me in bed just after Rick left for work. "Mommy there were two dogs that chased Daddy's car when he left for work. They were big! One was brown. One was white. They ran really fast.
"And they are still big and still white and still brown and still following Daddy's car! All that's the real, true story." All said with huge eyes and great seriousness mixed with enthusiastic emphasis. I guess we have past and present tenses down now. :D

Fiction Fridays: Leisha Kelly

Last week I reviewed Julia's Last Hope by Janette Oke. A similar title with a totally different storyline, Julia's Hope by Leisha Kelly, is not a story about fertility challenges, but rather depicts one family's struggle through the great depression of the 1930s. If you are up to reading a beautiful story about the fierce love of motherhood, enjoy this sweet read.

Feeling Better

I'm actually feeling semi-human again today! :) In celebration, don't miss out on Passover my give-away link over at Hope Harvesters™. My fever broken this morning and my sores are almost totally resolved. I also slept much better last night than I had for quite a while. The amazing thing about having had chicken pox so many times is that each case seems to be blessedly lighter and more quickly resolved than the time before, and adding the anti-viral medicine this time around too, seems to have really helped. I think given the choice between recurrent chicken pox and shingles, I would just as soon keep going this route.

Acyclovir has been hard on my tummy and I'm in quite a bit of pain because I can't take my normal pain pills while taking this. I got a migraine the day before the pox broke out and am still fighting a pretty nasty headache, though it's now different than my typical migraine, so possibly a side effect of the Acyclovir instead? Yesterday the headache was especially vicious. It's still here today, but not nearly as nasty as it has been. The good news is that the Acyclovir has been hard on the chicken pox virus too! My doctor says that as long as I have no oozing sores and no fever, I'm free to be out in public. I had figured church was out on Sunday, but it's actually looking like I might be fine to go.

Tonight our kids are spending the night with my parents. Rick will be at a men's church group meeting this evening and I'll hopefully feel up to starting to tackle paperwork for our tax filing (is the deadline really less than a month away already?!) while the house is quiet. Then Rick and I are taking the whole day tomorrow just to regroup and be alone together after an especially stressful few weeks.

Our last alone time was our latest trip to Stanford, and since the focus of that whole trip was medical, it wasn't terribly relaxing. This will be our first day alone together, without a medical focus, in a very long time and we are both relishing the fact that we get to have a date tomorrow even if we do nothing but stay in bed and watch movies together all day! :) We have a couple of gift certificates, so if my tummy's doing well enough, we might even go out for dinner.

Will be wonderful to have the whole family back together again tomorrow evening. Our youngest has been with his other grandparents since last Sunday and his original planned mid-week return was delayed because I was down so hard. I'm thankful he had such a better week playing on the farm than a very sick Mommy could have given him here at home, but I'm sure missing him and looking forward to having him home again.

Chicken Pox, Again!

I woke up with Chicken Pox this morning. This is either my 6th or 7th time. I've honestly lost count now. The first time was a REALLY, REALLY bad case (down throat, under eyelids, etc.) as a kid. All the rest as an adult have been since my CFS onset and milder with few pox but still full-fledged on all the other fun stuff like fever and general yuckiness. The joys of a compromised immune system...

Fiction Fridays: Janette Oke

Several books by Janette Oke include infertility and/or loss themes:

The Love Comes Softly series, while the main character is quite fertile, also includes a subplot of a friend with recurrent losses and eventually giving birth to her only living son with special needs. Later in the same series, there is stillbirth.

Canadian West series, especially by the second and later books, is very much an infertility story and also includes adoption loss and fulfilled adoption dreams.


A Bride for Donnigan has the main character being very unsympathetic with her friend's miscarriage grief until she herself suffers a stillborn baby.

Julia's Last Hope depicts an after-infertility mom of twins who opens her home as a bed-and-breakfast. Her first client is a pregnant teen who is sent away to give birth and relinquish her child for adoption to save the wealthy family from disgrace. Julia gives a great representation of the processing of after-infertility emotions and I could relate to many of her conversations with God.

Janette's books are typically light, quick reading. Some even consider them "fluff" but I "cut my teeth" on Christian fiction with these as a teenager and Janette's stories will always hold a very special place in my heart. I know she has other titles that are strong fertility-related plot lines, but these are the ones that come to mind off the top of my head. Do you have any to add to this list?

Win Racoon Tales :)

Joy DeKok, author of the wonderful book Rain Dance that I talked about in February, also writes stories for children. Just came across a give away for her adorable book Raccoon Tales and wanted to share the chance to win with you!

Broken

I haven't posted much about my health the last few weeks because I haven't been sure what to post. More of the boring same I guess. I feel yucky. My body (and sometimes my spirit as well) simply feels broken.

When we put the IVIG on hold for the month of December, I nievely presumed that I would find benefit when I went back to them in January, but the last three IVs, even spaced at two weeks apart rather than weekly, each seemed to progressively take more away from me than they gave. Our trip to Standford took a huge toll on me as well! I've hardly had a day since coming back when I haven't spent at least a portion of the day down hard in bed. I've had several weeks when I've only been out of bed one to four hours per day.

Homeschooling is progressing very slowly this year. Fortunately we all commented today how much we love to snuggle up in bed and read together - great thing because we are doing a LOT of that this year! I commented that snuggling in bed and reading together was my "favorite part of the day" and all the kids chimed in that it was their favorite time of our daily routine as well. How like God, to take the one thing I'm really good at these days (being in bed) and make it a source of joy for my family. :)

For the most part I'm leaving the house only to go to church on Sunday mornings and to get my kids to their homeschool co-op on Thursdays. Last week I had my dad take the kids to co-op. Rick's doing most of our grocery shopping and when I do go it's usually with my mom and using an electric cart. I'm becoming more and more dependant on my wheelchair outside the house and I can't remember the last time I was strong enough to walk to the end of our street to check the mail box. I was asked to share the opening Scripture reading and prayer at church yesterday morning and intentionally sat just a couple of rows from the front so I would have an easy walk, but made the mistake of closing my eyes for prayer and felt my knees buckle as I swayed into the microphone and nearly collapsed.

It's hard to say if it's a result of pushing through those last couple of IVs when my body was showing obvious signs of rejection (thus weakening me to the point where I couldn't fight off things) or if it is because I have now stopped the IVs all together (thus no longer being infused with the immunities of others), but over the past 2 1/2 weeks I've been fighting several different kinds of infections:
- a bladder infection (fluids and super-strength cranberry tablets)
- a systemic yeast infection (double dose of Dyflucan didn't touch it, so i'm on two weeks of Nystatin now, three times a day)
- a bacterial infection (localized antibiotic treatment in hopes of killing off the infection without feeding the yeast)
- a digestive virus (OTC)
- very sore throat, slightly stuffy nose and plugged ears (OTC)
- and as of last night, lovely white patches to accentuate my raw throat (don't know if they are fungal, bacterial or viral, and honestly don't have the energy to drag myself back to the doctor to find out right now)

Thankfully I am, so far, avoiding the nasty cough that's going around though! For this I am very thankful. I'm also still managing to avoid the nearly-daily fevers that I had prior to starting the IVs last summer, but I'm now struggling to maintain even a 97 degree body temperature, typically hovering around the 96 to 96.8 range these days. Don't even have any idea what to think about that? I'm cold most of the time, gaining weight rapidly, but my thyroid panel numbers are "beautiful".

Today I was having a pity-party day. :( I started off my morning with prayer and Scripture and thought I was going to make a positive day for my kids, but we didn't even make it through breakfast before I knew I was physically and emotionally in really bad shape. It's been a long day. satan's been feeding me lies and I've been clinging to the Truth like a drowning woman, but it truly felt like I was going to loose the battle today.

"Lord, I NEED answers!"
"I AM your answers."
"Oh yes, that's true. Thanks for the reminder."

30 seconds later, "Father, I can't do this!"
"I AM your strength."

"It's endless. I need a break!"
"Lean not on your own understanding. Trust me. Wait on me."

Just when I felt like I was going to explode, the phone rang. I almost didn't answer. I'm in no shape to talk to anyone. But God knew I needed a "Jesus with flesh on" in that moment and He prompted a friend who could relate on such a personal level to call at that very moment. I hate that she is hurting and struggling too, but I am so blessed that she took a moment to reach out, to speak Life and words of encouragement. To be an outside voice speaking Truth over me as she bathed my blistered heart in verses I needed to hear. Becky, thank you for living out 2 Corinthians 1:3-4:
“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”

"The LORD is close to the brokenhearted and saves those who are crushed in spirit."
- Psalm 34:18 (NIV)

"The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise."
- Psalm 51:17

Showers of Blessing

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

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

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

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

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

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

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

Fiction Fridays: Marriage Wish

The Marriage Wish by Dee Henderson is about a young widow who goes into preterm labor shortly after the death of her husband and their little girl lives only 3 month, all in the NICU. It's a tearjerker for sure, but very realistic in dealing with the grief emotions that she processes as she slowly learns to risk loving again.



Have you read any good fiction that deals with pregnancy loss or infant death in a profound way? I'm always looking for great Christian reads that will minister to hurting hearts in the process of offering entertainment. Please let me know what's on your bookshelf that my readers might enjoy!

National Grammar Day

Tomorrow is National Grammar Day! What, you aren't as excited as I am? As both an author and a homeschooling mom, I need all the grammar and writing tips I can find. While I have yet to read any of her books, the author I've linked here lives in my hometown but has been in the national spotlight on multiple television and radio broadcasts. She's said to make grammar really fun and I plan to pick up her books soon. In the meantime, her website offers some great ways to celebrate Grammar Day, such as a free e-card, 10 grammar myths, and a tip-of-the-week.

While we are celebrating, today's "I Want You To Be Happy Day" so drop by my InnerBeautyGirlz blog to share your ideas for bringing a smile to a friend's face and also find a great Affordable Mineral Makeup™ discount code good today and tomorrow only. :)