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.

Much

The past two months have been MUCH for me. Much of good, much of sad, much of pain, much stress, much of growing, much of clinging to God, just MUCH.

Listening to my siblings walk through challenges and trying to be a good big sister, watching my Grandma continue to decline and the stress on my parents as they care for her, watching my dear dear friends lose their three precious boys, watching my friends see their young one diagnosed with an autoimmune disease. And dealing with some of my own stuff. MUCH.

And asking why a lot. Why the pain, why the suffering, why the confusion and frustration, why the trials, why the tears. My emotional glass is overflowing.

And I have no answers to those whys.

But I have glimmers. Because through each of these horribly sad and seemingly needless (to me) trials that I have witnessed these past two months - I see His hand moving. Part of me doesn't want to see it, part of me wants to cry out in unfairness - but He is so gracious to patiently show me that even though I don't understand WHY, He does. And that is okay- it's actually better that way. A lot better. And while tears are streaming as I type this, there is a quiet and deep peace, that He will bring good from all these events, I have to admit, I've seen it already - the jaw-dropping beauty of parents praising God for the brief time they had with their baby boys, the deepening trust of a mom, who through tears, injects her kiddo with medicine to ease the pain of disease, the sweet Scripture verses sent by several friends to remind me of God's sovereignty and His absolute and unconditional love for me, and the tangible greater awareness I have of His love than I did two months ago.

"From of old no one has heard or perceived by the ear, no eye has seen a God besides you, who acts for those who wait for him" - Isaiah 64:4.

So I wait Lord - with anticipation to see the fruit that will come from these trials. The growing of my friends in their knowledge of your character, the encouragement I receive from how they walk with you through these trials, the tighter clinging, from all of us, to the Cross each day.

"For who has known the mind of the Lord, or who has been his counselor? Or who has given a gift to him that he might be repaid? For from him and through him and to him are all things. To him be glory forever. Amen" - Romans 11:34-35

So yes, through tears, through unanswered questions, Glory be to you Lord. You have not changed, you are Sovereign. Thank you for allowing me to see that and to truly believe those words, not just type them. That is grace.

Rudolph is a girl

Well, according to my two year old nephew, Rudolph is a girl.

Background:

When I visited back in November, Carter decided that I had to read him "Rudolph the Red Nosed Reindeer" about 50 times a day. Not kidding. I can't tell you how many times we sang the song. So for Christmas, I decided to send him a stuffed animal Rudolph.

My sister keeps telling me that he takes it EVERYWHERE. He calls it "my baby, my favorite baby". But he also calls it "her" - "Her name Woo-dolf".

Here's proof - cell phone video, so forgive the quality. I do want to point out one thing...after Monica asks him if it's his favorite toy and he says "yes", the next thing he says is "Nana gave me Woo-dolf". Nana. NANA. Kid cannot remember that I am SISSA. Apparently, when Monica corrects him, he agrees with her that Sissa got it for him. Then he says Nana again. Oh well. I find it pretty funny :) And seriously, how cute is he?

Ugly food

This is hands down the ugliest food I have ever made.

The recipe was called "Vegetarian cabbage rolls". But it really left a lot to be desired - they said to boil the veggies that go in the filling - gasp - I sautéed them instead (hello, flavor!). I used red quinoa instead of the bulgur (since bulgur has gluten in it) and decided to use the red cabbage I had on hand.

Before stuffing...red cabbage, when boiled, apparently goes all blue-green-mottled purple...not exactly appetizing. Next time, I stick with green cabbage. The filling is zucchini, orange bell pepper, baby portabella mushrooms, garlic, and red quinoa with thyme, basil, and marjoram. I think next time I may try ground turkey in them...

See? Ugly stuffed cabbage rolls...and I do not get how one is supposed to roll cabbage either, so mine are more like cabbage burritos/tacos that I placed strategically in the pan so they would look like rolls for the picture :)

Topped with a tomato/sriracha sauce I came up with...that wasn't bad.

In general, they are pretty tasty, as long as you don't look at them. Not sure if I am a fan of marjoram though...that was a new spice for me. I would try this recipe again, but with some more tweaking.

Mirror!

I've been searching for a mirror for my dining room. Here are a couple that I was eyeing:

This one is from World Market. It has a mercury glass look that I love. But it's $200, which is more than I wanted to spend

This beauty is from MadeGoods - they only sell their items to home decorating stores. They gave me the stores in Houston where I could order their products, but after all that emailing I still couldn't get a price out of them...home decorating store more than likely equals out of my price range, so this one remained on the "drool over" list.

I happened to go into Marshalls HomeGoods the other day and checked out their mirrors and lo and behold found a perfect mirror, for only $40! How excited was I?

It's got this great mercury/bronze/metal-wirey thing going on.

And here you go (it's actual level, that was a proud moment). Now to find a vintage-y cabinet to sit on the left hand side of the mirror for some dining stuff and to add a few more things on the wall - needs some color pops and blue is what I am going with.

Flourless cupcakes?

I found a recipe for flourless chocolate cupcakes.

I like the simplicity of this recipe - just a handful of ingredients.

Note to self - if I plan to do more of these "flourless" recipes, I really need to invest in a better food processor. My itty bitty black and decker one just about died trying to get the chocolate and almonds to a "consistency of coarse sand"...the mixture ended up more like semi-fine gravel...so I was a bit worried on how they would bake...

Ready to go in the oven (see the 'gravel' in the center of each cup? - that's why I was worried)

And the result - not bad at all. Even my roomie liked them. They are incredibly rich and definitely didn't need frosting, but thankfully the texture ended up being nice - not too gravelly. I would make these again - maybe in a mini-size, since they are so rich...