"Fantastic Voyage?" Sorta...

The post title is a throwback to the 1966 movie "Fantastic Voyage" - where a special submarine and medical crew are miniaturized and injected into this guy's body to repair something...I've never seen it, only heard the references (yeah, it was either "Fantastic Voyage" or "Invisible Enemy", which is an old Doctor Who episode, as the post title - I figured I'd have more bites on the F.V. :) ).

I almost posted pictures... but I think that would be crossing the line...I mean, who really wants to see the inside of my stomach?

On Friday I had an EGD (esphagogastroduodenoscopy) done - where they knock you out and stick a camera down your throat to look inside your stomach. On top of the flare I have been having, I've developed some intense stomach pain, so the investigation has commenced. Thankfully, the EGD was normal - I got to see cool pics (after the procedure of course. I was awesomely unconscious for it...) of my esophagus and stomach and stuff. Everything checks out clean...which is both relieving and frustrating because, where is the pain coming from? The gastro doc is having me get a CT this week to see if that will show anything. Huge praise is that I didn't react badly to the anesthesia as I have in the past - the plastic bowl/bag strategically placed in my friend Amanda's car for the ride home was NOT needed :). I think she might be more thankful than I am...

In the meantime, I'll admit I'm having a rough go of it, so prayers are appreciated. I appear to have picked up a sore throat/cough bug, so that in addition to the stomach pain, in addition to the fever/joint pain from the flare is just not much fun. So if you ask me how I am doing and get a subdued "eh"...well, I'm just being honest...I can only wear the "everything's hunky-dory peachy keen" mask for so long - it gets tiring and it's not honest. So working on the balance between being honest, but not complaining. I've been spending more time praying for others - I find that helps take my thoughts off of me and avoids that self-pity cycle that can be easy to get into.

I am HUGELY thankful that my stomach has starting growling again and my appetite seems to be picking up. Praise God! And that even though I don't feel well, I am still able to get things done at work and at home - a HUGE blessing. It definitely helps mentally and emotionally when you can still be productive. And God has been teaching me more and more about how His plans are different than mine, and better, even though I can't understand exactly why things have to happen they way they do. And that He will sustain me. I am learning more about not stewing on the "why is/isn't this happening?" and more on just resting on "I AM" and the fact that "I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God who loved me and gave himself for me" (Galatians 2:20).

Whew, but SO ready for this particular trial to be over. And that's being honest :)

Gratitude

A sweet friend sent me this song as an encouragement, which it has accomplished...lyrics are below and you can listen to it here.

Gratitude by Nichole Nordeman

Gratitude

Send some rain, would You send some rain?
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy down
Surely You can see that we are thirsty and afraid
But maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

(Chorus)

We'll give thanks to You
With gratitude
For lessons learned in how to thirst for You
How to bless the very sun that warms our face
If You never send us rain

Daily bread, give us daily bread
Bless our bodies, keep our children fed
Fill our cups, then fill them up again tonight
Wrap us up and warm us through
Tucked away beneath our sturdy roofs
Let us slumber safe from danger's view this time
Or maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

(Chorus)

We'll give thanks to You
With gratitude
A lesson learned to hunger after You
That a starry sky offers a better view if no roof is overhead And if we never taste that bread

Oh, the differences that often are between
What we want and what we really need

So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case . . .

(Chorus)

We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace

But Jesus, would You please . . .

180 degrees

I had a 180 degree moment this week.

Background (potentially background overkill...)

I am still flaring and this past weekend, started having some intense stomach pain, so I headed to my regular doctor on Tuesday. I'm on the low dose of steroids, which can cause ulcers, so I thought maybe that was the problem, even though I have been on oral steroids a TON in the past and never had any problems. She agreed the pain was definitely my stomach (versus connective tissue, because I have had problems with connective tissue inflammation in the area that the pain was in) and expressed concern about the pain combined with the weight loss I have had, so she said I need to get an endoscopy of my stomach done. So I have a consultation with a gastroenterologist next week to get that scheduled. She prescribed an acid reflux med and an appetite stimulant. But, I am SO tired of swallowing medicines, that I've decided to hold off on the appetite stimulant and see if acupuncture can help. Yup, I am back under the needles. I had 30 (!!!) in me on Thursday. The last time I was flaring, the needles helped break the cyclic fevers I get when I flare, which helps SO much in making me feel better ('cause really, you just feel so BLAH when you have a fever). I had needles in my stomach too, and those HURT going in, so that's an acupuncture-y sign that something is going on. And my stomach started growling again when she put them in...so hopefully a good sign of things to come. I see the acupuncturist next week as well, so I am hoping to get the same fever-eradicating results as last time :). Oh and my rheumatologist decided to double my dose of one of my immunosupressive meds. So needless to say, I was mentally, emotionally, and spiritually maxed out on doctors, pills, and the "House- esque"-ness of my situation by mid-week.

End background overkill.

But the title of the blog comes into play this past Thursday, as I was sitting in my car in the drive thru pickup line at Walgreen's to get the acid reflux medicine. Originally, the prescription my doctor wrote wasn't covered well by my insurance and I wasn't going to spend that much money on something that may or may not fix the problem. So, this was actually round two at Walgreens for this med. The pharmacist told me the total and it was even more than the first prescription and that it was so expensive because I had reached the limits on my insurance. That made me pause. 1) I have really good insurance, so that just sounded weird and 2) fleeting panic on what would happen if my insurance REALLY was maxed out. And then my brain kicked in and I started asking a series of questions about my prescriptions on file, had them rerun some insurance stuff, and finally requested that they remove the first acid reflux med request from my file and voila! the new med cleared (cost me $5, yay insurance!). As I was driving away, I found myself thinking "wow, that's just great, cluttering up my brain with all sorts of prescription/insurance-y info, wish I didn't know this stuff"...and God just turned my thoughts and my attitude 180 degrees. I became THANKFUL that I knew what questions to ask and what suggestions to make - it probably saved me about an hour on the phone with the insurance company the next day trying to figure out what the problem was.

I am so thankful that God is faithful to continue to do the work He is doing in my life even when I am not open to His teaching. Reminding me that He is Sovereign. Increasing my dependency on Him. Reminding me that He is all I need.

"And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ" - Philippians 1:6

Recent reads

Here are my recent reads:

1. Thunderstruck by Erik Larson

I was disappointed by this one from Erik Larson (whom I usually RAVE about). A non-fiction account of the development of the wireless radio (the Marconi system) and an unsolved murder and how they are intertwined. The nerd in me had a couple of "!!!" moments:

1) I was fascinated by the story of Titanic as a kid, I watched the PBS special when they discovered it and was hooked. I've probably written at least six research papers on it throughout junior high and high school. The Marconi system was used on the Titanic to wire the Carpathia and the Californian for help, so learning more about the device was kinda cool.

2) Marconi interacted with Tesla and Kelvin. TESLA and KELVIN. ::enter nerd moment:: Even though I couldn't stand my Electricity and Magnetism (E&M) Physics class in college (seriously BLECH), I cannot imagine sitting in a room with all those amazing minds and dialoging about your recent scientific discoveries.

I had a really hard time getting into the story and had to force myself to finish the book - it just wasn't gripping and the stories weren't as melded as they have been in past Larson books. You can skip this one.

2) The Pilgrim's Progress by John Bunyan

My accountability partner, Jessica, and I, decided that we have finished this book :). We loved the story of Christian, but both of us are struggling getting through Christiana's story. Christian's story is all pen-marked up, me circling amazing nuggets of truth and Scripture applied. Christiana's has one pen-mark - I'm just not feeling it. I only have about 50 pages left of her story, so the perfectionist in me WILL finish it soon, but I decided to go ahead and blog about it (I'll wait to update Goodreads ;-) ).

Even though this book was written 350 years ago, Christian's story struck home in so many areas. And it was so awesome to see how Jessica and I were underlining the same parts! - God used this book to deepen our friendship and opened up opportunities for us to share the paths that God has led us on up to now - the growing times, the stumbling times with each other. Truly amazing. Each discussion of this book just led to us praising God for the work He has done in our lives. Highly recommend reading this book.

3) In the Garden of Beasts by Erik Larson

To go along with my recent foray into World War Two history (ahem, Churchill), I thought this would be an interesting perspective. This one also took me awhile to get into, but it definitely picked up in the second half as Mr. Larson found his stride and his gift for making history a page turner kicked in. This is the account of the US Ambassador to Berlin during the time Hitler was rising to power. I learned a lot - the early Hitler stuff that isn't covered in school. And it was so thought-provoking - what are we turning our eyes from now because it is uncomfortable or "that couldn't possibly happened?". Ponder away. A weak beginning, but a respectable ending. Of the four Eric Larson books I've read, this one ranks 3rd.

Project Chandelier

So a couple of weeks ago, I found an old brass chandelier on craigslist for $10 to replace the perfectly-nice-but-not-me-Tuscan-style light fixture in the breakfast nook.

I bought spray paint, a piece of longer chain, and updated light bulbs.

Lots of dust on this lamp

Before shot

Cleaned up pre-paint

Makeover time!

So long Tuscan fixture!

And...DONE!!! I absolutely love how it came out.

And the after! I still have to add the swag kit to center the chandelier over the table, but I have to extend the grounding wire before doing that...should have that taken care of in the next week or so.

Back to square one?

It might just be back to square one. With respect to treating my disease that is.

I started flaring again last week and just happened to have my standard every 3 month rheumatologist appointment scheduled for today, so the timing worked out well. I hate when I make my rheumatologist get a sad face- he just sits there and listens to me list off my physical complaints and his brow gets more furrowed and the corners of his mouth turn down more. Just not fun. I appreciate how dedicated he is to getting me feeling better and that he really listens to me.

As you loyal blog readers know, my disease has been really unstable the past two years. I’ve been flaring more than I have been in remission. My doctor and I finally said the words I was loathe to hear at today’s appointment -“the meds aren’t working, we need to try something new."

A new drug was just approved last March for the treatment of Lupus - which I don’t officially have, although I have a ton of symptoms of it. That’s the tricky part about autoimmune diseases - there is so much overlap of symptoms that it can be very hard to figure out the exact name of your disease (for instance, for about 4 years, my diagnosis was Mixed Connective Tissue Disease - then I presented much more solid symptoms of Sjogren’s and Raynaud’s - so it changed to that - but lately I have been presenting lupus and other autouimmune disease symptoms - so it’s a constantly changing beast). This new drug sounds really scary. I should be used to scary drugs, considering the cocktail I take now, so for me to say it sounds scary, well, you get what I mean.

If we did decide to go with this new drug, I wouldn’t start until the summer because of the trips I have scheduled. I am willing to wait until after the trips because I am not horribly uncomfortable or incapacitated. And I really want to go on these trips. The side effects of the medication and how it has to be administered (via IV) would prevent me from traveling to remote locations until we see how my body reacts to it. And I get the feeling that my doctor wants to mull it over a bit longer too, so we aren't rushing into anything at this time. They took a TON of blood today and we are still trying to figure out why a year and a half ago my body stopped responding to the steroidal treatments that we were using to stop the flares. I’m thankful for the time to think this over and also look at other options and possibly get a second opinion, as much as I trust my current doc.

So for now, I maintain the usual medicine cocktail and we added a low dose of prednisone (steroids) to help as an appetite stimulant (since we're pretty sure the steroids won't do anything with the inflammation due to my apparent immunity) - let's just say I've lost a decent amount of weight over the past few months and I don't want to end up looking like Skeletor :eww:

So here's to this flare being short lived. And I would greatly appreciate prayers for wisdom for me and my doctor on what to do next. Also, can I just say how thankful I am to live in an age where we have these medicines to help keep us feeling well? Read in a Melissa voice: "I am thankful" :)

Pinterest Party

My awesome friend and running buddy, Lisa, decided to celebrate her birthday by having a Pinterest Party. A group of us "voted" on which projects that we or others had pinned on Pinterest (the virtual bulletin board website) to complete on a Saturday afternoon. Throw in good food (hello chocolate fondue), good company, and good music (a spontaneous purchase of Ingrid Michaelson concert tickets (eek!), and you have a great girly day!

Working on some fabric rosettes for the wreath

Beth and Melissa hard at work on their wreaths

Christina making some art for her son's room

Lisa making a leaf canvas and Pooja mod podging some wedding photos onto canvas

Fondue break :)

Done with my fabric rosette wreath :) This will be going on my front door soon.