Wine Country Getaway

Ron and I took a few days to drive up the coast to just get away and catch our breath. We love the central coast - it's majestic beauty, slow pace, friendly people, and the miles and miles of undeveloped land. Every so often, we just need to get out of town to breathe! There's something restorative and healing- for both mind and body- in getting out in nature. Watching the way the sun makes the ocean glisten like millions of diamonds, listening to the waves crash on the shore, feeling the warmth of the sun's rays on your skin, smelling the fresh, clear, unpolluted air... Enjoying the brilliant colors of the wildflowers growing in the fields and observing the new growth of the miles and miles of vineyards. So many of God's gifts to enjoy and be thankful for!!

We had a wonderful time just drinking in the beauty all around us, having great conversations, driving throughout wine country, seeing beautiful vineyards and wineries and ranches, and taking in the sights of the coast.

Driving along the breathtaking coast....

Shopping at the quaint little stores...

This is where we stayed: Wine Valley Inn

Favorite thing to do: coffee and bookstores. We spent a couple hours sitting at The Book Loft in the sun here on the patio.

Had a great dinner at the Solvang Brewing Company

 

We drove past miles and miles of gorgeous vineyards!

Favorite garden shoppe in Cambria

 

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Update

Spent the morning at Kaiser having follow up appointments with my nephrologist and rheumatologist. Both consultations went well!

The kidney doctor went over some recent labs and explained that the reason for the elevated numbers on some of the tests were due to the damage that the Wegner's did to my kidneys.(damage to both the blood vessels and to the "filters"). He reminded me that while my kidneys will never be completely normal, I still have kidney damage, they still are healthy enough to last a long time at this level. Seems like any complications in the future can be managed with medication. The doctor seemed pleased at my progress and even said that he was optomistic- which is quite a statement coming from him ! (as it seems like he tends toward being pessimistic naturally).

Even with the good news, the doctors are quick to remind me that this is a chronic condition that I will be living with and managing the rest of my life. There is no cure for Wegners, just remission with hyper vigilence to monitor symptoms of possible relapses / flare ups in order to catch it early enough to take action. I have to be super careful of warning signs that the Wegners might be flaring up: watching for colds that won't go away, shortness of breath, coughing up blood, stomach pain...pretty much the same symptoms that I initially had that put me in the hospital. They seemed to be confident that they would be able to carch things early because I will continue to have monthly blood tests that will also show any relapses.

The rheumatologist said that my ANCA levels were negative which is a measurement of the Wegners. I have thee more weeks on the chemo drug and will be switching to a less toxic (fewer side effects) maintenance drug. I'll need to be on this for about a year. The doctor also reduced the Prednisone by another pill- so I am down to just 2 pills (8 mg) of that per day! In the hospital I was on 100 mg. (IV) daily and 4 months ago I was taking 12 pills (48 mg) a day! So grateful for the reduced dosage!

I am hoping to see a reduction in the Prednisone side effects soon- the swollen face and the diabetes are the two most troublesome ones I'm anxious to get rid of! And with the chemo about to end, I can look forward to my hair growing back- it has gotten very thin and the bald spots are getting harder to cover up. :)

Last week I fell on the pavement and hurt my back. (I think I hurt my pride more!) ;). Luckily I was with two friends who helped me up off the ground and took me home. I'm still really sore... maybe because I'm getting old or maybe because I'm still weak from being sick... not sure which, but it seems to be taking a long time to heal up!

Hoping to get lots of rest this week- gearing up for a Boomsma Girls' Road Trip to Phoenix at the end of the month to see my Mom and Zach and Andrea.

 

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Get- Away!

Ron and I will be gone for a few days next week...driving up the coast for a little three day get-away. With my being sick, we didn't really get a chance to celebrate our anniversary. Since I'm off dialysis and feeling stronger and able to walk greater distances, I'm a little more freed up to travel further away from home.

We got a good deal on Groupon for a quaint little hotel in Solvang. I know it's a little touristy but I really love it up there! During this time of year the hills are so beautiful and green and it feels like you are in Europe. I am just looking forward to the beautiful scenery, spending time gazing at the ocean at El Capitan, shopping in the sweet little stores in the village, having coffee at a Danish coffee shop, visiting some of the local wineries and reading by the pool.

I've been pretty housebound for the past 5 months as I've been recuperating from the hospital stay and undergoing treatment for the Wegners. This will be the first time I've gotten away in almost 6 months! I think that being quarentined during the flu season has helped me stay healthy and heal quicker, but I am ready to get out of the house!

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Satisfied in You

I have lost my appetite

And a flood is welling up behind my eyes

So I eat the tears I cry

And if that were not enough

They know just the words to cut and tear and prod

When they ask me “Whereʼs your God?”

Why are you downcast, oh my soul?

Why so disturbed within me?

I can remember when you showed your face to me

As a deer pants for water, so my soul thirsts for you

And when I survey Your splendor, You so faithfully renew

Like a bed of rest for my fainting flesh

When Iʼm looking at the ground

Itʼs an inbred feedback loop that drags me down

So itʼs time to lift my brow

And remember better days

When I loved to worship you and learn your ways

Singing sweetest songs of praise

Let my sighs give way to songs that sing about your faithfulness

Let my pain reveal your glory as my only real rest

Let my losses show me all I truly have is you

So when Iʼm drowning out at sea

And all your breakers and your waves crash down on me

Iʼll recall your safety scheme

Youʼre the one who made the waves

And your Son went out to suffer in my place

And to show me that Iʼm safe

Why am I down?

Why so disturbed?

I am satisfied in you

 

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Springtime

After reading Edith Schaeffer's The Hidden Art of Homemaking I got inspired to do some gardening. In her book, she talks about God being the first Artist. And, since we are created in His image, we too are artists and reflect His glory and artistry by celebrating beauty in our everyday lives - through cooking, decorating, sketching, music, writing, poetry, gardening...etc.

While our home hasnt been entirely devoid of these "hidden arts", I am encouraged to make more time to cultivate them and teach the girls their value. It's hard to keep myself from beginning a dozen new projects all at once! I think I need to finish some projects that have been on the shelf for some time now. I have fresh inspiration to complete a handmade quilt that I started years ago!

Paige continues to grow in the artistry of sewing and creating fashion as she pursues her degree in design. It's fun to hear the hum of her sewing machine and watch her design clothes on the computer.

I always welcome the sound of Ashley and Taylor practicing their violin and cello and guitars. And it's a special treat if I can catch Ashley singing! I love the time in the afternoon when they practice their instruments and wonderful sounds come wafting from their rooms!

We are trying to cook more together- spending time in the kitchen trying out new recipes and making mealtimes more of an event- a way to celebrate family, artistry and creativity.

Decided to try my hand at starting flowers from seed. While Ron is finishing up the back patio and having to redo both the front and back lawns, I have time to start some flower seedlings indoors to get them ready for planting in the garden beds when he's done. I would love to eventually build a little potting table for the back yard to work from.

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Blogsy- Does This Thing Work?

Just bought a new app that helps me blog from my iPad. I've tried to post things from my little iPad, and haven't been able to add photos or get quotes from online. Having fun learning something new.

Here's a video of a song that I've been listening to and reading the lyrics since coming home from the hospital. Spurgeon had a few stanzas in a book I've been reading: Beside Still Waters.

 

I am trying it out and learning how it all works. In this post, I am just practicing all the different features from posting to transferring photos to copying things from online.

 

Here are the lyrics.

"How Firm a Foundation, Ye Saints of the Lord"

by "Keen," 1787, alt.

1. How firm a foundation, ye saints of the Lord,

Is laid for your faith in His excellent Word!

What more can He say than to you He hath said

Who unto the Savior for refuge have fled?

2. In every condition, -- in sickness, in health,

In poverty's vale, or abounding in wealth,

FAt home and abroad, on the land, on the sea, --

The Lord, the Almighty, they strength e'er shall be.

3. "Fear not, I am with thee, oh, be not dismayed,

For I am thy God and will still give thee aid;

I'll strengthen thee, help thee, and cause thee to stand,

Upheld by My righteous, omnipotent hand.

4. "When through the deep waters I call thee to go,

The rivers of sorrow shall not overflow;

For I will be with thee thy troubles to bless

And sanctify to thee thy deepest distress.

5. "When through fiery trials thy pathway shall lie,

My grace, all-sufficient, shall be thy supply.

The flames shall not hurt thee; I only design

Thy dross to consume and thy gold to refine.

6. "E'en down to old age all My people shall prove

My sovereign, eternal, unchangeable love;

And when hoary hairs shall their temples adorn,

Like lambs they shall still in My bosom be borne.

7. "The soul that on Jesus hath leaned for repose

I will not, I will not, desert to his foes;

That soul, though all hell should endeavor to shake,

I'll never, no never, no never, forsake!"

 

 

 

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Two steps forward...one step back....

I have blood tests done every two weeks (8 vials!) to monitor the Wegners, diabetes, anemia, inflammation, kidney function as well as a dozen other things and then doctors make the necessary adjustments to my meds according to the lab results.

This week, I've had a bit of a setback: experiencing edema, very high and very low blood sugars,  not feeling well, fatigued and weak and nauseated.

My most recent labs showed an increase in inflammation and that my kidneys were struggling to filter out protein and iron.  The nephrologist (kidney doctor) changed up some of my meds and I'm already seeing improvement with the edema.

I will have more labs done in two weeks and also see a couple doctors on the 18th - so will know more then.

On the Nightstand...

What I'm currently reading:

 

 

 

 

 

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