Forward plan

The day before I left for vacation, I met with the NRD (New Rheumo Doc) and talked the results of my labs. He confirmed that I most definitely have the Sjogren's and Lupus antibodies (I had told him that, but didn't have the latest numbers in front of me). Normal ( i.e not having Sjogren's or Lupus) is less than 1...I have a whopping level 8. He decided that because of such a reading, the lip biopsy wasn't going to be needed. Yay no puffy lips (I really wasn't that concerned, in fact, I was kinda looking forward to posting a goofy picture of me with puffy lips...oh well... :) ).

Then we started talking the forward plan. He mentioned the Benlysta meds and I must have made a face because he chuckled and said "oh that's right, you're the crazy woman who doesn't want to take Benlysta". Yup, he really did call me a crazy woman. :)

After some talking on my part telling him that I wasn't absolutely opposed to it, just the material that I had read was scary, he gave me some additional information on expected side affects, results, etc. And I discovered that I can't get approved for the other med that was on our earlier table of options, since my antibodies are Sjogren's/Lupus and the other med is only approved for R.A. (rheumatoid arthritis). Since I meet the required number of factors/symptoms to be diagnosed lupus, NRD officially coded me as SLE (systemic lupus erythematosus) with secondary Sjogren's. ::gulp::. And I agreed to give Benelysta a try. ::bigger gulp::

I spoke with my Current Rheumo Doc (CRD) while I was on vacation and they confirmed that they could administer Benlysta in their offices (Benlysta is given via IV). They are currently working the insurance stuff out, and as long as all of that clears, my first infusion will be on June 13th!

In addition to that forward plan, NRD had me try a new pain med and it works well!!! The pain isn't gone, but it is dulled sufficiently so that I feel like my brain is getting a break from dealing with the pain. It is amazing how much fighting pain exhausts you. And cheer-worthy aspect about this med is that it is NOT a narcotic, which means I can take it during the day (if needed) and not be all loopy/dizzy/non-functioning. Huge huge huge praise on finding something that is working until the new med can be administered and kick in.

So that's the forward plan. We'll see how it goes. Even if it doesn't pan out the way I hope it does, I know that God is still working through all of this and all that matters is that all of this is part of HIS plan.

Ligonier Conference recap

Ack - this is major blog catch-up.

At the beginning of May I went to the Ligonier Regional Conference here in Houston. The topic was "One Passion" and through several sermons, the speakers, Sinclair Ferguson and Steve Lawson, spoke about having one passion for God and how that looks in different areas: worship,  the Bible, work, and witnessing. The end of the conference concluded with an question/answer session with R.C. Sproul who video-teleconed in from Florida. Excellent teaching!!! It was the first time I had heard Steve Lawson speak and I enjoyed how he taught. So thankful for opportunities like this to spend a day and a half soaking up the wisdom these men have gained from their years of studying God's word.

Here were the highlights for me from each sermon:

One Passion in Worship

Hebrews 10:19-25

This text was written to new Christians who were used to an Old Testament form of worship (with robes, ceremonies, specific rules that had to be followed, etc), to show them and encourage them that their worship was now a first-hand experience, because of the presence of Jesus Christ. It is the presence of Jesus Christ that should drive a person to worship. Before Christ, worship was second hand, done through the priests. Now, "and since we have a great high priest" - that is, Jesus Christ, our worship is firsthand, and perfected by Christ, since Christ is in us.

"Singing praises to God is very often where we learn to think about God" - S.F.

One Passion in the Word


Psalm 119:161-168

The word "enthusiasm" - is Greek, en-theos - In God... wow, word-geek (me :) ) mind-blown. Those of us in God should be marked by our enthusiasm for God's word.

Marks of Spiritual Passion:
- Reverential awe - having a healthy, holy fear of the Lord - to take His word seriously
- Rejoicing - As believers, the joy that we have is the same joy that is in/was in Jesus Christ. The word of God should thrill our soul.
- Radiant love - It's a very good sign in your spiritual life if you can say you LOVE God's word
- Passion for God's word- circumstances should not change your praise of God. The deeper you go into the word, the more and higher you will praise God
- Real peace - our hearts are made to respond to God's word. Peace is not a destination, it is a by-product - only believers experience peace.

One Passion in Work


Titus 1:11-14

We need to be zealous in our works, you cannot compartmentalize good works, thus, whatever we do, we need to do it with zeal and passion, wholeheartedly. We were saved from lawless deeds in order to perform good deeds. There will always be consistency between the heart and deeds (Titus 1:16). As long as we are alive, there is work that we are supposed to be doing; when that work is complete, God will call us home. Good deeds/works are everything that God calls us to do within His will. Questions to ask yourself: are you born again? If so, are you doing good works? If so, are you doing them with zeal?

One Passion in Witnessing


Romans 1:14-17

If you have a passion for God, then you will have a passion for the gospel and then you will have a passion for sharing the gospel.

We are under obligation to give what we have been given (share the news of the gospel), we should be eager to share the gospel, and we should not be ashamed to share the gospel.

Quiet and still

I seem to be full of contradictory thoughts lately when it comes to this trial that I have been walking. I had a few really rough days this past week - Wednesday evening had me unable to sleep and up at midnight furiously journaling to try and reason out why I am going through this - I love to write and I tend to write out my prayers a lot. If you've talked to me, you know I talk quickly and can bounce around from topic to topic - so just imagine what goes on inside my head sometimes... it's factors worse, trust me :). Here's an excerpt from that particularly difficult, and ultimately growing, night:

 "I know you (God) have a plan and purpose and that I need to rely on you completely...and I feel that I do, by Your grace, so why I am still in this trial? Why do I still hurt? I just don't know how else I can grow through this. I've been here for so long, what more can you teach me? And yet, I am grateful Lord, I complain, yet I know you are there, I give up, but you continue to sustain me. Oh how do I keep going back and forth like this!?"

Ha, I read that and tears come to my eyes as I am overwhelmed by how God continually turns my eyes to Him, even when I fight it, even when I don't want to look, when I want to close my eyes and make everything go away - He makes me look at Him and marvel at the work He is doing in my stubborn heart - He opens my eyes to the small, beautiful things of every day life, continually works at stripping my heart of it's layers of ugliness so that He can replace it with His beauty.

I find myself more hungry for His word and wanting to know His character more. If this trial is bringing about all this, then why in the world would I want it to go away!? And yet...I do. Oh the contradictory nature of my thoughts sometimes! I am thankful for a God who was also Man and understands the turmoil of my thoughts and heart. I am thankful for His mercy and His patience to let me blather on and still continue to prod me along His path - I wish I traveled it with feet "a trippin' merrily" but, I don't...not always. Oh the fuss I can make sometimes!

A friend sent me an email on Monday with an article that had this verse in it: "You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock." - Isaiah 26:3-4. I did a pretty long study on Isaiah awhile ago, and I don't remember that verse. But Wednesday night, God used it much during my journaling chaos to still my mind and my heart and to focus on Him. To find my joy in Him. To remind me that my stability is on my Rock, not on the current state of my health.

On Friday, I must have timed my meds wrong, because I yakked my guts up through the morning as my girlfriends and I made our way up to Austin for a fun overnight trip. I sat in the car, desperately willing my stomach to settle and for the waves of nausea to pass, and lamenting that I might have to stay in bed the entire trip. Later that evening (with my stomach thankfully settled!)  a friend sent an email to me that spoke so clearly to the thoughts I was having during the car ride. She sent me a verse that had recently ministered to her: "Better is a handful of quietness than two hands full of toil and a striving after wind" Ecclesiastes 4:6.

Rather than being consumed by thoughts of what else to do with my disease, and frustrated with not being able to do things because I don't feel well, and, during the car ride to Austin, fiercely fighting against yakking my guts up more thanks to my meds, to just sit quietly, to accept what is going on, to know that He is at work and working everything out for my good and His glory, and to just stop fighting the path He has me on, to travel it quietly, with ears and heart open to what He wants me to learn. To be content and joyful in my trial. I can't tell you how many times I feel like I have learned how to do that, only to be right back at the beginning learning that lesson from a different perspective, deepening my understanding of what it means to be content and joyful.

So that's my focus - to be more quiet and still. To stop fighting against what I trust, and want to trust more and more, is God's way of working out His best for me.

I am not walking this trial alone. The two examples above of how God used friends to encourage me and remind of His presence are just the tip of the iceberg of the work He is doing in the background. I am so humbled and amazed by how much my God loves me.

Pseudo House Crashing

One of my favorite DIY blogs to read is Young House Love and they do this thing called "House Crashing" where they visit someone's house and post pictures of how awesome it is.

I didn't go through and take pictures of every room in these houses, hence this is only a pseudo house crashing, but two of my gracious friends allowed me to take pictures of certain aspects of their home that I will use for inspiration/ideas.

I took this one because I am seriously considering having my cabinets painted and the counter/backsplash colors in my friend Elizabeth's house match my kitchen closely, so I thought this gave a good feel for what white cabinets would look like in my kitchen.

These are from my friend Leslie's house. Her house is amazing. Mid-century and vintage. Love the colors. Love the exposed brick. Just love this house...and the friends who live it in, of course :)

Unexpected Second Opinion

I had a regular appointment with my rheumo doc today. I sat there and, well, cried, and told him awful I felt and he looked at my swollen and purple feet and walked out of the room and made a phone call.

An hour and a half later, I was sitting in the office of another of Houston's top rheumo doc's (mine is on that list too) at the University of Texas Frank C. Arnett Center for Immunobiology and Autoimmunity (it's a mouthful). I wasn't supposed to get in until May 17th and then with one of the newer docs. The doc I was sitting across from is their top guy- like doesn't take new patients kind of guy. We went through my history and he asked a lot of questions and told me a lot about his research (he was one of the first guys to   map out Sjogren antibodies). An hour and a half later (seriously, what an awesome doctor to spend that much time with one patient!) he looks at me and says "well, it's more than Sjogren's". This didn't make me roll my eyes like you might think, I mean sure, part of me wanted to say "um, DUH", but the other part was very relieved that it was looking like he was thinking along the same lines as My Rheumo Doc. And he was. He started walking me through his thought process.

See, the tricky thing is, my official diagnosis is Sjogren's Syndrome with secondary Reynaud's disease. But the symptoms that are causing me the most problems aren't Sjogren's, they are lupus and other autoimmune disease symptoms. The medications I am on treat all of these diseases, but they aren't working for me. The other medication options available are only approved for lupus or R.A.

New Rheumo Doc says the following "you either have Sjogren's PLUS something else that hasn't presented enough for us to diagnosis or you have, what I really think is,  Undifferentiated Connective Tissue Disease (UCTD)/clinical lupus (this means I have the symptoms, but not the lupus antibodies) and secondary Sjogren's, if we had to put a name to it. Changing the name doesn't change how we tackle the problem, but it does change the options available to us." I was actually first diagnosed with UCTD when I first had problems (they called it Mixed Connective Tissue Disease back then, that term isn't used anymore to describe the things I have wrong with me), and then my Sjogren's antibodies became so prominent that they officially changed it to Sjogren's.

So, anyhow, enough with the complicated disease names. The forward plan is more blood work tomorrow and a lip biopsy in the next week or two. Apparently, the lip is the best resource for determining your body's inflammation levels. So if I look like I got collagen injections in my lip in the next week, I assure you, I didn't :). Whether or not the biopsy is positive doesn't really change things, but if it is positive, it just gives more rationale for why I need to be on the new meds.

After that, we'll talk medication options. New Rhemuo Doc  (referred to as "NRD" below - yes, I work at NASA and I like acronyms) and I had a very lively conversation about medications. Something like this:

Me: My Rheumo Doc and I talked about Rituximab.
NRD: Yes, that's a good option, I was also thinking about Belimumab.
Me: That's another name for Benlysta right? (Benlysta is the scary drug I don't want to take)
NRD: Yes
Me: Not happening.
NRD: You'd rather take Rituximab than Benlysta?
Me: Dude, have you seen the reports on Benlysta's side affects!? (yes, I actually called him dude)
NRD: I would rather be tied to a train rail and run over by a train before taking Rituximab over Benlysta (that may not have been his EXACT example, but there was tying and pain involved). Rituximab has a lot more side affects that Benlysta, especially during the infusion process.
Me: But Benlysta seems to work for only about 0.35% of patients who take it
NRD: Well, yes that's true.
Me: (I just stared at him)
NRD: Well, I was just talking the side affects, not how well it works.

Oh NRD, you are funny. But that was good info he gave me about the Rituximab - I wasn't aware and will have to consider that.

Anyhow, we'll cross the medication bridge when we come to it. The good news is I walked out of My Rhemuo Doc's office with a purse full of a new pain med to try since the Vicadin isn't helping (yeah, bad sign when narcotics don't cut it. I hate narcotics. I mean, I am thankful they exist to help people in pain, but I don't like putting them into my body). So here's hoping the pain management goes better during the next few weeks while New Rhemuo Doc and My Rheumo Doc chat.

As for the Mayo Clinic, I am tabling that after New Rheumo Doc confirmed the research I have been doing that Mayo doesn't have a strong Rheumatology area (they are AMAZING in other areas). It also turns out that the top Sjogren's research center in the US is in Oklahoma (yay for something closer than Minnesota). If needed, they can send me there for more opinions. Or to Johns Hopkins or Harvard, who both have very strong rheumatological research institutions. Good to know I have some impressive options available.

I am so incredibly thankful how God moved and allowed me to get in sooner to get a second opinion. I had prayed just this morning for My Rheumo Doc and I to have wisdom about what to do next and thanked God for the knowledge of medicine and that we would apply it appropriately. God doesn't always answer prayers immediately, but today He did, and He knew He was going to even before I knew what to pray this morning. That's how awesome my God is. Thank you Lord.

Ode to Chard

To be honest, before I tried this recipe, the only swiss chard I have eaten was in the Sweet Potato and Swiss Chard Enchiladas at Taco Milagro (they are delicious, in case you were wondering).


This is another Pinterest recipe and I really like the mix of flavors - the chard has a very "green" earthy taste, the sherry wine/apple cider vinegar combo I used brought out the sweetness of both the onions and the raisins. Top that off with walnut-nutiness and I will definitely be rotating this in as a good green dish.

Melissa's tweaks: couldn't find sherry vinegar (a quick google whilst in the grocery store revealed that it is hard to find and expensive - folks recommended a mix of cooking wine and apple cider vinegar) so I used 1T of sherry cooking wine and 1T of apple cider vinegar. And I only used one bunch of red swiss chard and it was good for just one serving (the recipe says it is 8 servings...they must of used REALLY big bunches of chard...or didn't eat the heaping plate full that I did ;-) ). Well, my plate wasn't really heaping, see in the picture? So whatever, just keep that in mind when planning for a group of people. Also, note in the "Method" section, you heat a large pot. Yes, just the pot. Not the pot with water in it. Just the pot. Thankfully, I caught this before I complete boiled the pot of water.

Swiss chard with walnuts (recipe from Whole Foods)

Ingredients

1/2 cup raisins 
2 tablespoons sherry vinegar 
2 bunches Swiss chard, preferably rainbow, stems removed, leaves sliced 
1 red onion, sliced 
1/4 teaspoon sea salt 
1/4 cup walnuts, toasted and chopped

Method

Put raisins and vinegar in a small bowl with 1/4 cup boiling water. Set aside to let soak 10 minutes. 

Heat a large pot over medium-high heat. Drain and reserve raisins; add liquid to the pot. Add chard a few handfuls at a time, stirring and letting the chard cook down until all of it fits in the pot. Add onion and salt, lower heat to medium, cover and cook until onion and chard are tender, 10 to 12 minutes. Stir in raisins and cook 1 minute longer. Top with walnuts and serve.

Spring Cleaning Status

I know you all have just been on pins and needles to see how my spring cleaning went ;-). Two and a half weeks ago, I posted a list of spring cleaning items I wanted to accomplish by the end of April. I didn't get everything done - some of the items will get done tomorrow (windows and baseboards) but considering how I have been feeling lately, I'm pretty happy with what I was able to accomplish! I know that in the grand scheme of things, being able to accomplish household tasks probably isn't all that amazing, but I am thankful that God allowed me to do them, because I want to be a good steward of what He has blessed me with.

Spring Cleaning chores for the month of April:

Inside:

Wipe down cupboards and doors
Wipe down all light switches and door knobs
Wipe baseboards
Wipe down all blinds
Dust ceiling fans
Clean out/wipe down refrigerator and freezer
Use stainless steel cleaner on outside of refrigerator
Clean inside/outside of microwave-
Clean dishwasher - thanks Claire!
Go through cupboards and toss old spices/tea/etc
Wipe down pantry shelves and sweep inside of pantry
Move DVD shelves and remove all spiderwebs
Wash all windows (inside and outside) – all the ones that are easily accessible
Wash front glass door

Pull out refrigerator and stove and clean behind them

Outside:

Clean up deck outside – throw away dead plants/pots
Trim outside bushes
Trim trees out front
Trim gardenia bush on the side of the house
Powerwash driveway
Powerwash deck

I also added cleaning and organizing my closet and my nightstand drawers (catch all for...everything) and I got both of those done as well!

The remaining items I hope to have complete in the next couple of weeks and then my Spring Cleaning will officially be complete!