It's beginning to look a lot lile Christmas...

Here we are in Advent, there is snow on the ground, and my Christmas decorations are in place.  I love Christmas on so many levels, I thought I would start sharing some projects, memories, and other joys of the season.

Since we celebrated with our children and grandchildren when they were here over Thanksgiving, I can share some project photos to inspire those of you still searching for things to make, or looking for ideas for next year. My first offering of the year is the advent calendar I made for each of my boys' families.  The little quilted wall hanging has pockets with small ornaments for each day of December that can be hung on the little table-top tree, complete with its own little tree skirt.  It was a fun project, and I hope each family will enjoy it for years to come.

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Further adventures in chronic illness, or, a health update

It's been a while since I posted a health update, so following this last week's adventures, I thought I would catch everyone up to date. The short version is this: I will go off the cyclosporine in January, stay on the cellcept, and add IV- infusion treatments with Remicade to try to quell the disease in my eyes.  If that is enough info for you, feel free to skip the details below...

The last month on my higher dose of cyclosporine has resulted in rebellion by my body.  My kidneys are angry (creatinine levels up more than 50%, BUN numbers rising), my cholesterol is skyrocketing, my blood pressure is erratic, I am dealing with a stubborn virus that won't go away, and I developed a painful mouth ulcer with lots of swelling.  All these taken together mean my body is giving cyclosporine its marching orders.  And my tests (here and here) at UNM in ABQ yesterday showed that  my left eye is mostly quiet, but with some leaking from the blood vessels around the optic nerve still.  The right eye is more stubborn, and while it has improved some with the cyclosporine, it is still leaking.  So, since the cyclosporine is both wreaking havoc and not pushing the disease into remission, we must move along to try something else.

That next-best something is Remicade, along with cellcept.  Once we get the insurance on board and the details worked out, hopefully after the holidays, I will begin with three "upload doses", given every two weeks by IV.  After that we will begin infusions every 8 weeks.  We can increase the dose or the frequency as needed and as I an tolerate to try to force the birdshot into remission.  Once I hit remission, we will continue the infusions for two years, then try reducing and weaning off the drug, and hopefully staying in remission.  Obviously there are many unknowns here, and birdshot is so rare that you won't find the protocol for treating it without a lot of hard searching.  Every drug I use is used "off-label", or for something other than what the label says it can be used for.  So the great adventure continues...

If you have made it this far, let me give you a few specific prayer requests:

• Please pray for the details of where, when, and how for the infusions to be worked out quickly and definitively between multiple doctors at different institutions and the insurance company.
• Please pray that this would be an effective combination and God would use it to bring healing to my body.
• And most importantly, please pray that I would keep my eyes fixed on Christ, who does all things well and never wastes one bit of our suffering, but works it for our good and His glory.  Pray that I could rest under His frowning providence in this, and know His love and care even as I walk places I didn't want to go.  

Thank you, Gentle Readers, for your love and support and prayers!  My adventure with chronic disease continues.  I pray it pales in comparison to my adventures with a good God who has a bigger plan than any I can imagine.

Thursday thought: trusting in ignorance

This morning I read these words from Psalm 40:

I waited patiently for the Lord; He inclined to me and heard my cry.  He drew me up from the pit of destruction, out of the bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. Many will see and fear and put their trust in the Lord.
~Psalm 40: 1-3

It's easy to trust in hindsight.  We look back, and see what God has done in the past, and rejoice.  We see it, remember it, recollect it.  We have experienced it, and gained knowledge of it, and it is good.

But what is the opposite of hindsight?  According to thesaurus.com, the antonym of hindsight is ignorance. And when I look at the future, I am definitely that-- ignorant of what lies ahead. And somehow trusting God when I am in that kind of ignorance-- without knowing what is coming-- is a tougher task.

That's where David in the Psalms is such a comfort.  He understood the connection between hindsight and ignorance.  He knew that looking back at what God has done is exactly how we can trust Him without knowing what the future holds.  We don't trust the future-- or our ignorant selves.  We trust Him.

Praying that we may rest in that trust, despite our ignorance, Gentle Reader, and have a new song in our mouths.

Words for Wednesday

Psalm 42

1 As the deer pants for streams of water, so my soul pants for you, O God. 2 My soul thirsts for God, for the living God. When can I go and meet with God? 3 My tears have been my food day and night, while men say to me all day long, "Where is your God?" 4 These things I remember as I pour out my soul: how I used to go with the multitude, leading the procession to the house of God,with shouts of joy and thanksgiving among the festive throng. 5 Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and 6my God. My soul is downcast within me; therefore I will remember you from the land of the Jordan,the heights of Hermon--from Mount Mizar. 7 Deep calls to deep in the roar of your waterfalls; all your waves and breakers have swept over me. 8 By day the LORD directs his love, at night his song is with me-- a prayer to the God of my life. 9 I say to God my Rock, "Why have you forgottenme? Why must I go about mourning, oppressed by the enemy?" 10 My bones suffer mortal agonyas my foes taunt me, saying to me all day long, "Where is your God?" 11 Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.

Wednesday without words

Thursday thought: Commit

I met with a dear friend this week to work on some music for a future project.  We chatted about the music we were rehearsing-- some of which is a bit out of my comfort zone, but beautiful nevertheless-- and he challenged me to commit to the music.  He may not have seen it as a challenge, but then he is in his element, and I am bringing my folksy, "pure" sound to his jazz.  All the same, it dawned on me that he was right.  I am tentative and uncommitted because I am uncomfortable and it all feels risky to me. After all, why leave a place of ease and wander where you can fail?

As I have practiced my music and reflected on that comment this week, I have had an epiphany of sorts: Those of us who like to skirt along the edges of perfectionism and pietism and legalism by nature have to work to move out of that spot where we can excuse our failures because we didn't really try.  If we are going to do something, we ought to commit to it wholeheartedly, and learn from the successes and the failures. That is to live fully, trusting that God's providential hand has brought you to this day, this time, this challenge. And you have nothing to fear.

And so, here's hoping that you find the courage to commit to your life today, Gentle Reader.  I am quaking in my boots, but I am right behind you.

 

Wednesday without words