New and Rare

Well, I thought I was out of the world of "chronic illness" in the sense that over two decades of ME/CFS (chronic fatigue syndrome) seems to be mostly behind me, or at least about 90% in remission for over a year now.

I knew I was still dealing with numerous chronic disabilities and pain conditions in the wake of my strokes (several fairly significant ones listed at http://strokeofgrace.blogspot.com if you care to read), but I thought that was about it.


Nope, I was just diagnosed this week with a new rare disease, hypoparathyroidism. (I didn't know until this week that we even had parathyroid glads, about 4 of them, rice-sized, attached to the back side of the thyroid gland.) Apparently it is a pretty big deal when they don't work properly, and that mine are under-productive in the PTH hormone, answers so many medical questions. Now if only there were an easy fix... I've already had one lovely allergic reaction to an attempted intervention this week, so we are regrouping and my doctor is coming up with a new battle plan. It will likely take months or years to find a workable solution.

We honestly don't know what caused me to face this ailment. It typically happens in conjunction with thyroid issues, or more commonly, as a result of the removal of these tiny glands in thyroid surgery, something that I have not undergone. I personally believe the level of parathyroid imbalance that we are seeing, that my doctor terms "remarkable," is likely stroke-related (or may have been a mild issue for years, even possibly since birth, but certainly seems severely aggravated into much more significant imbalance by the strokes), but both the kinds of strokes and the type of parathyroid issues we are finding are each so rare, in and of themselves, that no one has yet been able to confirm my theory that the parathyroid issues have developed or intensified due to the strokes. (See update note at the end of page for one possible reason.)

Thankfully God knows, has it all in His control, none of this takes Him my any kind of surprise, and we can trust Him to lead us each step of the way in looking toward new answers.

Update, posted to my stroke blog, July, 2013:

I need to talk over with my endocrinologist about my insistence that my hypoPARAthyroid issues are somehow stroke related.  None of my doctors could see how, and yet I know my body too well to think the timing is just all coincidental. Doing research within the last couple of weeks, I found the potential link between repressed PTH (ParaThyroid Hormone) and Aspirin (I take 2, low dose, per day to keep my blood thin enough to not clot the surgery site of my artery). I brought this possibility up to my neurologist, and while we both agree that the Asprin therapy remains critical and is not optional for me, he does believe there is real merit to my theory that this is the cause of my PTH repression. I will talk over this idea with my endocrinologist at my next appointment in September.

Christ's Thorns

From Facebook, (not mine)

Light Born Into Darkness

In light today's (and other recent) shootings, I have no words. I direct you to a prayer, posted today by Max Lucado, saying (just in part),

Your world seems a bit darker this Christmas. But you were born in the dark, right? You came at night. The shepherds were nightshift workers. The Wise Men followed a star. Your first cries were heard in the shadows. To see your face, Mary and Joseph needed a candle flame. It was dark. Dark with Herod's jealousy. Dark with Roman oppression. Dark with poverty. Dark with violence.
Herod went on a rampage, killing babies. Joseph took you and your mom into Egypt. You were an immigrant before you were a Nazarene.

Read this Christmas Prayer in full at www.huffingtonpost.com/max-lucado/a-christmas-prayer_2_b_2302548.html .

When God Says No

Why would God say "no" to a good request? To a request like Paul's for the removal of his thorn? For our requests for healing?

This week Lysa TerKeurst said, "When God says no, we are sometimes tempted to wonder if He loves us. In reality, it’s because He loves us, He sometimes says no."

To illustrate this she gave a beautiful word picture of how a cake may look done 2/3 of the way through allotted baking time, but if it's pulled from the oven too soon, it collapses. She writes, "The cake couldn’t withstand the pressure of an undone center… and neither can we.
"If we obsess over the cake and make it our whole focus, character atrophies. If we make growing in godliness our obsession and keep our focus on God, our character matures. And a mature character makes for a solid and well done center."

The rest of Lysa's post can be found here: Escaping the Rut of Want

I've said over and over that I believe pain is a gift, though certainly an odd one. The thing that makes it a gift is the way it drives us to dependence on God. If I'm fixated only on my illness, or my desire to be well, I miss out on God's best for me right here, right now, right in the heart of living these trials.

Gift or Curse?

I found this video link to David Ring after reading (in)Courage today, where Allison Morrison shares about raising her long-awaited son Sam, who was born with Cerebral Palsy. She writes,

"I’m not gonna sugar coat it–we just could’ve done without CP in our lives. But God saw fit to give it to us anyway. So what do we do with it?

"Before last night we would’ve bumbled along doing the best we could praying for a miracle healing. But after hearing David speak it’s a whole new ballgame... [CP] is our opportunity to show others how God has been good to us. Did we ask for CP? No way. Did David? Nope, but as he said he wouldn’t trade his life for a minute... He is blessed and so are we–so is Sam.

"It is up to us to help Sam develop his full potential and then to get out of the way and let God work. We gave Sam to God when he was born and we have to accept how God intends for him to be.

"We must not waste this opportunity that we’ve been given. We have been entrusted with something sacred and we have to praise Him and trust His plans for us!"

Visit Alison at (in)Courage to read more.

As Joni Eareckson Tada says, “God aborts devilish schemes to serve His own ends. God permits what He hates to accomplish that which He loves. Heaven and hell can participate in the exact same event, but for different reasons.”

Thankful for Thorns

If there was ever a story more perfect for this blog, I sure don't know what it would be. Puts "thorns" in a whole new light! Please take a moment to follow this link...

Thankful for the Thorns

The whole story is beautiful, but line that really hit me was, "Remember, it was a crown of thorns that Jesus wore so we might know His love. Don't resent the thorns." Wow!

Surviving

Bonnie Gray shared some great thoughts on Surving the In-Bwtween Times today over at (in)Courage. What really stood out to me was her thoughts on John 15:5.

"Abide in me and I in you and you will bear fruit." John 15:5

Abiding doesn’t sound impressive. I doubt it’d make a good marketing slogan or create much buzz in today’s speaking circuit. Kinda archaic compared to our self-made headlines.

Yet, it is the one action Jesus reveals in His secret to living a fruitful life. What does it actually mean? I wondered?

The Greek word for “abide” is Meno

1. to survive

2. to be held

3. to wait

I was stunned. Simply surviving makes a difference to God...

His Strength

This Isn't Light!

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."
- 2 Corinthians 4:16-17 (NIV)

I so appreciated Rachel's thoughts on this verse today at (in)Courage. In part she shares:

Light and momentary troubles? There are days when my troubles feel anything but light and momentary! They feel awful and overwhelming. But when I shift my focus from my immediate circumstances to an eternal perspective, I see my troubles for what they truly are: brief. Compared to eternity, this is just a moment. Suffering is only for a time; it will one day end. Heaven will last forever.

Okay, so the troubles of today are brief compared to eternity. I get that. But light? How are these afflictions light? They feel so heavy. My body grows weaker, and apart from a miracle, it will never function normally again. I can’t be the wife and mother for my family that I want to be. This isn’t light; this is huge...

To read more, including her resolution to these questions, please visit Rachel's website, One Day at a Time (living in weakness, resting in grace, waiting in hope), or (in)Courage. :)

Character

‎"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."

~ Helen Keller

 Sounds like James 1:2-4 to me:

"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." [The Message]

or

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." [New International Version]

The Name

I wrote this poem at the beginning of the year. I'm posting it today in honor of the grand opening of the Whittemore Peterson Institute in Reno, Nevada. (Permission to reprint the following poem is granted by the author if reprinted in full, including copyright line, and linking back to this blog at http://www.GivenMeaThorn.blogspot.com  If you are not familiar with my journey though "Chronic Fatigue Syndrome," or XMRV- Associated Neuro-Immune Disease, you may want to start here.)

What's In a Name?

Head pounding

Throat burning

Pain radiates up

Into my teeth, into my ears

I'm hot

Wait, I'm freezing

Sweats and fevers

Come and go

Snuggled down in bed

In my softest jammies

Hoping for relief in slumber

Elusive sleep refuses to come

Thoughts wear me down by racing at manic speed

Of an unstoppable bullet train

Or are as muddied as trying to gain a clear view of sea life

While snorkeling in pea soup

The weight of my pajamas brings pain

Agony from every point of contact with the bed

Cozy blankets feel like sandpaper against my skin

Invisible icepicks stab randomly at my body

Where there's no pain

Tingling or numbness instead

Muscles randomly twitch and jump

Sudden weakness and I loose grasp of what I hold

The room whirls

I'm dizzy even lying flat

When I walk haltingly down the hall

I feel for the wall to keep my balance

At least I don't have hives tonight

Something to be thankful for in this moment

They come and go, here nearly as often as not

I'm glad they have not chosen to visit right now

How can I feel ravenously hungry

And nauseous all at the same time?

The thought of food turns my stomach

Yet I crave something to eat, just don't know what

My limbs feel like lead

The weight packing onto my body

Because I cannot tolerate the simplest of exercise

Only compounds my frustration

Movement saps limited reserves

I try to lie still; it works for a moment

Before waves of pain tip the scale

I writhe to keep from crying out

Every breath an effort

Not “pain” exactly, a distinct heaviness

Exhausting to push chest in and out

Would be easier not to inhale

Depressed? Want to die?

No!

Just putting my reality down on paper

Rather than wearing my loved ones out with my complaints

My nemesis has been given many titles:

The belittling “Yuppy Flu”

A pathetically nondescript “Chronic Fatigue Syndrome”

The slightly more accurate mantle of “Chronic Fatigue Immune Dysfunction Syndrome”

And after nearly 20 years of this living nightmare

Finally a name that gives credence to the seriousness of my condition

XAND – Xenotropic murine leukemia virus-related virus Associated Neuro-immune Disease*

Who would have thought I would find affirmation

Even relief, in testing positive for a life-altering retrovirus?

It's the validation that brings me gladness

I've been sick all along...

And now IT has a real name

*Since the original writing of this poem, HGRAD, standing for Human Gamma Retrovirus (HGRV) Associated Disease, seems to be the more scientifically correct name, replacing "XAND" as "XMRV" was not originally well named from a technical standpoint, being a clearly human virus, rather than murine (mouse) in nature.

© Copyright, Jennifer Saake, 2010

Dedicated to the researchers at the Whittemore Peterson Institute

Update, February 2011:
This poem has placed in the top 20 in a worldwide poetry contest at InvisibleDisesases.com.

Disabilities

Today marks the 20th anniversary of the signing of the Americans with Disabilities Act (ADA) into law.  There's a great op ed article for CNN written by Joni Eareckson Tada today, linked along with a few specific prayer requests at Joni and Friends:
http://www.joniandfriends.org/blog/monday-july-26th-update-joni/

Storms

Wasting Time

Living with chronic illness often seems like life wasted. As my sweet friend Debbie friend just told me this past weekend, "I keep telling God I could do so much for Him if I was healthier."

In my inbox this morning was this great reminder from Holley Gerth contemplating Christ's life as a carpenter until formal ministry began at age 30, reminding me that God calls me to faithfulness in ever season. God has purpose in extended seasons of waiting and "being still" even if it feels like I should be "doing something" different. May His purpose be fulfilled in my life, be it in bed or where ever else He may call and equip me.

This is another day, O Lord. I know not what it will bring forth, but make me ready, Lord, for whatever it may be. If I am to stand up, help me to stand bravely. If I am to sit still, help me to sit quietly. If I am to lie low, help me to do it patiently. And if I am to do nothing, let me do it gallantly. Make these words more than words, and give me the Spirit of Jesus. Amen.

- from The Book of Common Prayer

"For we are God's workmanship created in Christ Jesus to do good works, which God prepared in advance for us to do."
- Ephesians 2:10