Wednesday, April 4, 2012

My antibodies are raging war here...



Yes, it’s true. My antibodies aren't a fan of me.


So the last you heard of the medical saga was that I was going to get a CT done for the stomach pain. I got that done and it was all clear. Good news, but still begs the question - where is this pain coming from?


Another trip to the Rheumo doc (that’s waaay easier to type than rheumatologist) earned a “we’re missing something. Something else is going on”. So he started brainstorming. And I mentioned getting a second opinion (I’ve been doing some research on my own), and he heartily agreed because I think he’s at the end of his options with me. So he sent me to an infectious diseases doctor.


Why infectious diseases? It was actually a brilliant piece of his thinking outside the box in my opinion. I travel a lot. We just suppressed my immune system even more about 8 weeks ago, which was when I started having more (and new) symptoms. So maybe I had picked up something during my travels that was dormant or that whatever semblance I have of an immune system was able to fight in the background, but now that I am uber immunosuppressed, my body was like “yeah right, have at it”. I went to this really awesome doctor at St. Luke’s and he asked a TON of questions and then looked at me and said “I’m pretty sure this is not infectious. But because you do have a couple of “flags”, I am going to do some basic tests/cultures. If they turn up negative, we’re not putting you through the meat grinder”. So I was chest-xrayed and had about half of the blood in my body drained (yes, that’s an exaggeration, but it was a LOT of vials!). And everything was negative. Yay, I am not infectious. :)


Meanwhile, my symptoms keep worsening. Major issues with fever and swollen joints (as in hip and SI joints so inflamed that I have trouble walking in the evening). And I hurt. All the time. My wrists, fingers, ankles, toes, hips, and shoulders are the worse, and even the connective tissue between my ribs and my jaw is not happy. I was pretty miserable in the evenings during this past weekend in AZ, so I called my Rheumo doc on Monday and he worked me in yesterday.


We started the paperwork to send me to the Mayo Clinic in Rochester, MN (they specialize in rheumo-stuff). We had talked about doing this at my last appointment if the ID doc couldn’t find something. And he also mentioned some awesome rheumo docs at the UT rheumo clinic (in Houston)– so I’ve got an appointment in May with them, and hopefully they can work me in sooner. And then we talked other medication options.


In hopes of tiding me over until I can get a second opinion at UT or Mayo, we’ve drastically increased the dosages on both my immuno-suppressive drugs. So if I was uber immuno-suppressed before, call me uberificially immunosuppressed now. We’re also looking at using some biological medications that will kill my B cells – B cells produce antibodies and my antibodies attack me. Autoimmune diseases can be caused by overactive/dysfunctional B cell production (B cells come from white cell lymphocytes ). He’s starting the process of getting me approved for one of them –it’s not a common med to treat Sjogren’s, but it has been done before for patients who are “not responding to aggressive therapy” (that would be me). It’s ridiculously expensive and difficult to get a hold of, so there is a lot of insurance hoopla to go through. Thankfully, there was no more talk of the scary new lupus drug he had mentioned earlier. I have done some additional research and refuse to go on it, but looks like it’s off the table. Thankful about that!


So there we go – future consultations at the UT Autoimmune and Rheumatology Clinic and the Mayo Clinic in work. Uberificially immuno-suppressed. And my antibodies don't like me :).

So thankful that my rheumo doc doesn’t have ego issues about me getting a second opinion – not that it would have stopped me, but it makes it less stressful. And I am thankful that even though I am hurting and am uncomfortable, God gives me the grace to still get work done and spend time with friends and family.

Saturday, March 17, 2012

Melted Crayon Artwork


My Pinterest project was to do some melted crayon artwork.

I bought a 16 X 20 canvas ( 2 pack for $7.99!) and 2 boxes of Crayola 64 count crayons ( $2.99 a box). I am not sure how other brands of crayons would melt - I have a feeling they would be too waxy and the color wouldn't be as consistent.

First I had to choose the colors - this is going in my dining room, which is orange and will soon have a blue cabinet in it, so I wanted to pick up those two colors, but not be all "orange and blue" looking.


I hot glued my color choices to the top of the canvas.

Then I used my embossing heat gun to melt the crayons. Most instructions I found said to use a hairdryer and also said that it could take up to an hour to melt the crayons. My heat gun accomplish the melting in 5 minutes. You can get embossing guns at craft stores for under $20.

Whoohoo, it's working! Definitely do this on cardboard or drip catching surface because the wax pooled at the bottom and did splatter off the sides some.

The crayons melted SO fast...there was even smoke. To get longer drips, I just held the heat gun over the crayons for longer.

And melted! A $10 DIY piece of art :)

I am going to add the word "EAT" to this somewhere, but I need to get the wooden letters first. Can't wait to sit this on the top of the new cabinet...guess I should finish painting it huh? :) So many projects to tackle!

March Pinterest Party

Well, I had so much fun at Lisa's Pinterest party last month, that I decided to have my own. I invited a few ladies over and told them them bring the supplies to complete one Pinterest project (or a craft project if they didn't do Pinterest). I had a blast with these ladies, eating, chatting, and getting crafty :). Great way to spend some hours on a Saturday afternoon! (I'll post separately on my project...)


Daniella, painting a striped onesie for a birthday gift for her neighbor

Leslie started with some gray yarn...and look how far she got: almost a whole hippo hat!

Colette covering some old lampshades with some cool fabric

Sunday, March 11, 2012

Book droolage


Yup, another book that deserves a dedicated post.

Jesus + Nothing = Everything by Tullian Tchividjian

I don't think I've ever underlined, bracketed, and side noted a book more - it looks like it was attacked by a Smurf (um, I used a blue pen...Smurfs are blue...anyways...).

Back in the fall, my church was going through Colossians and during one of the sermons, the pastor said "Jesus plus nothing equals everything". At the time, I was doing my own little side study on the fullness in God, so this statement was quite appropriate (mind blowing) for me at the time. And then I discovered a book had just been released with this same title AND it was based on Colossians. Oh, how excited was I!? (very, in case you were wondering).

I find myself often putting more importance and emphasis on things rather than on God. And this book addresses the question "why do we need anything more than what we already have in Christ?". Hence the title: Jesus + Nothing =Everything.

Here are some of the underlined snippets. I encourage you to read this book.

"Our performancism leads to pride when we succeed and to despair when we fail. But ultimately it leads to slavery either way, because it becomes all about us and what we must do to establish our own identity instead of resting in Jesus and what he accomplished to establish it for us"

"As A.W. Pink once wrote, "The great mistake made by people is hoping to discover in themselves that which is to be found in Christ alone"

"Progress in obedience happens only when our hearts realize that God's love for us does not depend on our progress in obedience"

"We're always to soak first in what God has already done before we set out to do."

"When we're captured and captivated by who Jesus is, we'll be empowered and equipped to resist the constant temptations to settle for anything less"

"The hard work of Christian growth, therefore, is to think less of ourselves and our performance and more of Jesus and his performance for us"

"Christian growth, in other words doesn't happen by first behaving better, but by believing better - believing in bigger, deeper, brighter ways what Christ has already secured for sinners"

"Real freedom happens when the rich resources of the gospel smash any sense of need to secure for ourselves anything beyond what Christ has already secured for us"

"The gospel grants us the strength to admit we're weak and needy and restless - knowing that Christ's finished work has proven to be all the strength and fulfillment and peace we could ever want, and more"

"When you understand that your significance and identity and purpose and direction are all anchored in Christ, you don't have to win - you're free to lose"

"sin turns us inward and the gospel turns us outward. The gospel causes us to look up and out, away from ourselves. It turns our gaze upward to God and outward to others, both to those inside the church and those outside it"

"In fact, real spiritual growth happens as we look up to Christ and what he did, out to our neighbors and what they need, not in to ourselves and how we're doing"

"Our natural tendency is to focus on ourselves - on our obedience (or lack thereof), on our performance (good or bad), on our holiness - instead of on Christ and his obedience, his performance, and his holiness for us"

"This means that for Christians, the level of passion with which God loves you is not determined by the level of passion with which you love him. The Son's passion for you secured the Father's passion for you"

"The determining factor in my relationship to God is not my past or my present, but Christ's past and his present"

"This freedom Jesus secured for me is not freedom from pain and suffer; rather, it's a freedom in pain and suffering"

"Where are we focusing our efforts? Are we working hard to perform? Or are we working hard to rest in Christ's performance?"


Saturday, March 10, 2012

Chevron curtains for the guest bedroom!

Remember the mood board I created for the guest bedroom?


Here it is to jog your memory

Well, I finally tackled the chevron curtains!

I used Merete curtains from IKEA (white canvas, $29.99 for two panels). I washed, dried, and hemmed them and then came: the chevroning.

I laid out a plastic drop cloth and then covered it with a canvas drop cloth. Turns out, I didn't really need the plastic one, because the paint did not soak through the curtain, but definitely better to be safe than sorry when painting on wood floors!


After figuring out the measurements, I marked the curtains, blue taped everything and then used a smooth foam roller to apply the paint (it's Behr's indoor flat in Jamaican Sea, it looks baby blue in the pictures but you'll see it's a tealish color when it dries)

Finished curtains!

Now, the curtains aren't perfect...I seem to get paint everywhere, so there are some smudges and also some places where I need to touch up the paint because you can see a bit of light...but in this picture, they look pretty good to me :).

Barnaby



Back in December, my roommate said she had heard something in the attic - I looked but saw nothing. She heard something several times and I just decided she was crazy ( :) ). Well, one Saturday in January, I was sitting in my room and noticed that both my cats were staring at the ceiling (anyone with pets knows it is unnerving when pets stare at nothing). I turned down my music and sure enough, I heard SOMETHING galumphing about in the attic. And it sounded big. So I sat there, staring at the ceiling for about an hour, working up the courage to go up there and check it out.

Armed with a piece of wood dowel (scary right?) and a flashlight, I climbed up the attic stairs (while talking to the critter mind you, "hey critter, don't come fly at my head please", "hey critter critter, keep your pointy teeth away from me"). I popped my head up into the attic and closed my eyes, imagining the scene from "Christmas Vacation" where the squirrel comes flying out of the Christmas tree. Nothing came flying, so I continued climbing up further into the attic, still talking to the critter, and peered into the corners of the attic with the handy flashlight and I SAW HIM: a little masked bandit hiding in the corner staring right at me. I managed NOT to fall down the attic stairs (although I may have nailed a fireman's slide on the first try).

The next day, I did a walk around of the house to determine how an animal that big could have gotten into the attic and found this:


Yes, the raccoon was actually a saber-toothed raccoon and gnawed through the eaves of my roof to gain access. That's a pretty desperate saber-toothed raccoon.

I borrowed a humane trap from a friend who had recently had a raccoon in his attic as well (really raccoons? It's not that cold in Houston...) and I attempted to trap Barnaby...oh yeah, I named the raccoon Barnaby, figured if he was living in my house, he might as well have a name.


Alas, Barnaby did not fall for the trap. I ended up keeping the attic light on for several nights and didn't hear any noises. On the day that the handyman came to repair the roof, I went up into the attic and looked around and made a lot of noise just in case he was still up there. After the hole was sealed, I left the trap up there for a bit, just in case.

Almost two months later, no Barnaby. Ahh...home-owning adventures :)

Sunday, March 4, 2012

"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 :)