Being steadfast amidst the ups and downs

image courtesy of http://www.steadfast.com.au/html/

I've been on the new stomach contracting meds for almost a week now. They are definitely helping me eat better! I was thrilled to have gained two pounds over the last two weeks (not every day that you hear a woman get excited about gaining weight :) ). It's nice to hear my stomach growl again. With the new meds, the doctor had said that I should see the pain start to lessen over time. Everyone keeps asking "well, how much time?" Oh my goodness, I wish I knew. And that's been the most recent hurdle for me to tackle. Patience. Again.

Now that we have a "forward plan, " I want everything to hurry up and get better a la pop-the-magic-pill-and-the-pain-goes-away...and that hasn't happened yet. Well, to be clear, the new med doesn't take the pain away. But my trusty Vicadin does :) - and makes me woozy, and dizzy, and queasy, and if I am talking to you and suddenly shake my head or gaze over your shoulder, it's cause I am seeing two or three of you :). There have been a few dose-ings of pain meds where I have gone 6 to 7 hours in between a dose, but it's still pretty much the standard every 5 hours, and I had a couple of really rough pain days last week AFTER I started the new meds, so...patience. Blah.

I'm currently studying the book of Hebrews and the book of James with one of my accountability partners and with my roommate, respectively. So far, both books have been a lot about suffering and trials and what I have learned thus far in my studies has been so applicable and helpful to my current situation. The most recent lesson on James was no exception. This is the verse that stuck out to me:

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him" - James 1:12

Merriam-Webster definition of steadfast: firmly fixed in place or firm belief, determination and adherence, not subject to change.

I found myself staring at the word "steadfast" and wondering where my steadfastness had gone. Last week, before the new meds, I was all patient and waiting and trusting. Post new meds, I became anxious, impatient, and exasperated. I do trust that the Lord is doing His work in me, not just because He has provided a new med for me to be on, but because He is working all of this out for my good and His glory (see Philippians 1:6).

So why can't I still be steadfast (or at least, attempt to be steadfast...my steadfastness has never been the greatest, even on my "best" days)?

Ah, it would be because I am trusting in the wrong things - my willpower to make myself better, the pill that I swallow before every meal, my plan. All the wrong things. I can be thankful that He has given me medicine, determination, goals, but I need to not put my trust in those, but put my trust in Him. So this week, I am focusing on being steadfast by trusting in Him, meditating on the verse from James, and the other verses I looked up regarding the Lord's own steadfastness in my life - He is a perfect example of steadfastness and that is who I should be looking to for how to be steadfast. Thanks be to Him and His grace to open my eyes so quickly to see the error of my where I am placing my trust and for Him to work in my heart to realign it.

How many times can one work in the word "steadfast" into a blog post? Answer: 13 times :)

I miss coffee

Coffee...oh that elixir of awesomeness that warms you and wakes you at the same time. I have been known to hug my coffee mug. Yes, I have issues, that should surprise none of you :). For the last four weeks (gasp, it's been four weeks!?) coffee has smelled and sounded disgusting to me. I'm allowed to drink it, I have no diet restrictions right now, but it just doesn't sound good to me. But I find myself missing it at the same time. Weird. Tea, on the other hand, sounds awesome, and I down about three mugs of it daily, black tea in the morning being a staple for the caffeine...still need my caffeine fix :)

The latest on the abdominal drama:

I met with the GI doctor on Tuesday and from the camera-swallowing test, he saw no new lesions - this is a HUGE praise because we didn't even talk about the "other" autoimmune disease that more lesions could have indicated. Such mercy.

From the gastric emptying test (instead of radioactive oatmeal, I ate a radioactive egg sandwich and then they filmed my stomach for the next ninety minutes to see how quickly my stomach emptied.) I do have gastroparesis (paralysis of the stomach) and it's severe enough that I started on meds yesterday. I take them before every meal to start my stomach contracting. The doc said that over time, the pain should lessen. Here's where the medical geek in me geeked out about the body/brain awesomeness (seriously, if I think to much about it, I think I slightly sprain something in my mind). What I am experiencing is called "visceral pain" - my stomach isn't working right, so it tells my brain "hey brain, I am not working correctly." The signal from the stomach is interpreted as a pain signal, so therefore, I feel pain. Crazy right? And difficult to treat. The whole gastroparesis thing isn't well understood either - it's most likely due to nerve damage, but from what? Most patients with gastroparesis are diabetics, which I am thankfully not. So I still have some open questions about that - the most likely culprit is the lupus. I have an infusion on Friday, so I am hoping to catch my rheumo doc then and ask him more about it.

So, now, I wait. I am going to email my acupuncturist and ask her if some Chinese herbs or some needles might help (the med I am on is only allowed for short-term use due to the serious side effects it has. After a month, I go on a less effective antibiotic...for how long, I am still not sure). Back in the spring, I was using acupuncture for my joint pain, lack of appetite, and fevers. It helped with the fevers and lack of appetite. I was experiencing the abdominal pain back then too, but it went away. I just connected the two thoughts yesterday that it went away after my acupuncture treatments, so there may be a non-medicine swallowing way to help the problem, which I am all for...so I am going to look into that.

Several people have asked - so, are you going crazy, having to be at home, and not just be at home and able to do stuff, but really, only be able to be at home and lay around all day? The answer is, surprisingly, no. Sure, I get a little antsy at times, and I am very much looking forward to getting back to my "normal" life, but God has given me such a peace and trust in how things are going. I am also blessed with at least one visitor per day and that really helps break up the day - I find my days going by swiftly. The fact that I am usually always on the go, doing fifty million projects at once, and always have a full schedule, and I am NOT going bonkers right now is only because of the grace and mercy of the Lord and I am very thankful for what He is doing in my life right now.

"For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it" - Hebrews 12:11

Leaps and bounds

I'm sitting (er...reclining...I don't "sit" anymore :) ) here with about eight electrodes attached to my torso, my arm resting on a small computer that I am wearing in a glorified fanny pack as a small camera (it's the size of a large vitamin and it had blinking LEDs...and I swallowed it. Eek!) makes it's way through my innards and records its journey. Pretty cool, huh? I am thankful for technology. But this post isn't about my thankfulness for technology, it's about the leaps and bounds progress that my attitude has made over the past two years.

I have been OVERWHELMINGLY blessed by the number of visitors over the past two weeks (I have at least one per day),  the quantity of emails, text messages - people checking in on me, seeing how things are going, asking if they can bring over anything. I'm a bit dumbfounded. And I have had several people thank ME for allowing them to come over and clean my house or bring me groceries - they are thankful that I allowed them to help. While one friend was sharing this with me, I was struck but how far God has brought me over the past two years, because this time around, there was never any question in my mind about needing help - I needed it! But that hasn't always been my attitude.

Two years ago when I was dealing with The Back, I had a really hard time accepting help. I didn't want anyone to see me so helpless and pitiful (admit it folks, my gimping around was quite pitiful). I didn't want to accept help and, I didn't want to ask for help. Whether or not I said it out loud, I wanted to be self-sufficient. My pride not only damaged a couple of friendships that, thankfully and mercifully,  God has since restored, but it also kept me from experiencing the blessing of receiving help, of showing a vulnerability and openness that deepens friendships. I don't know when my attitude changed. I think it has been a slow process, based on the desire He has given me to know Him better and to strive to seek His face in all things. To learn how to trust Him more. Over the past two years, He has allowed me to see that I do need help and that allowing people to help allows them to demonstrate the brotherly love that we are called to show to one another as believers, it allows THEM to grow in their walk with God as well.

"A new commandment I give to you, that you love one another, just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you have love for one another" - John 13:34

"Love one another in brotherly affection, outdo one another in showing honor" - Romans 12:10

Exercising humility can grow my brothers and sisters in Christ!? I find that really special. Especially since over the past two years, and more so over the past eight months, I have been so convicted to pray more for the growth of my fellow believers, to pray as Paul prays in Colossians 1:9-10 "And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of His will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to Him, bearing fruit in every good work and increasing in the knowledge of God." So here is another way that I can encourage those around me...by letting them help me. That seems so simple, but it can be SO hard at times.

I've been thinking about this post for a couple of days because it's been just such a nice surprise to see how far God has brought me, know that I still have a ways to go, but to be able to SEE the changes He has made in my heart and know that it is Him working...it's just been such a sweet couple of days of thinking on His goodness to me. I'm definitely still growing in this area of putting aside my pride and accepting help.  I got a great "mom look" from a friend this morning when she caught me trying to empty the dishwasher before she did the dishes...hehehe...I'm still a work in progress. :)

So thank you to my brothers and sisters, to my friends, my family - thank you for showing love towards me and for allowing Him to work in and through you.

I'm not leaving

"I'm not leaving until you guys give me the results of my CT."

Yup, that is verbatim what I told my doctor yesterday. I appreciate my GI doctor, but he's not always the most prepared...for instance, having the CT results ready for my follow-up appointment with him.

The nurse chuckled at my statement and told me to sit tight. I chose to nap on the exam table. About 30ish minutes later, CT results in hand, the doctor and nurse entered the room and proceeded to have a very productive discussion in which my waning confidence in my doctor was restored by his probing questions, inclusive discussions about what to do next with my health, and surprisingly friendly bedside manner. Okay, doc, I'll keep coming to see you.

The CT results were clear - he had been looking for evidence of vasculitis - inflammation in the veins - and didn't detect any. Check that off the list of pain-culprits. The in-depth review of the EGD I had done last week revealed some lesions on my insides. Since these lesions are in a place that isn't accessible by currently available procedures, I will swallow a camera next week and let it move through my system, recording images of my insides to see how far the lesions extend. I think that's pretty cool :). And then the day after that, I will eat some radioactive oatmeal and be monitored to see how quickly it moves through my system to determine how severe my gastroparesis (paralysis of the stomach) is. The lesions and the gastroparesis may be part of my lupus...and they may be signs that yet another autoimmune disease is emerging.

That last bit..."yet another autoimmune disease" threw a wrench in my steadiness yesterday. "Another one? I already have three...and the one that this could potentially be is pretty brutal...ugh, is that what I am in for now? Good night, I'm 31 years old and falling apart. Why can't I ever be "textbook"?" - that was my internal monologue late yesterday afternoon. And I crumbled a bit. I got scared. Looking into the face of another disease, another set of medicines, another regime of dietary changes, symptoms, pain. "I don't think I can handle this. I don't want to handle this. Pass! Uh-huh, not going this way. Can I just check out please?"

After about ten minutes of blubbering, more logical thoughts starting popping up "hmm, call your rheumo doc and ask if the Benlysta could be worsening things that were already present." The abdominal pain started before I was on Benlysta and also returned before I was on Benlysta, but, that doesn't mean there might be some connection. An email sent to a friend was returned with a reminder of how I had just memorized 2 Corinthians 12: 9-10 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses so that the power of Christ may rest upon me. For the sake of Christ then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." Yup Lord, I am weak. But I know you can get me through this, whatever "this" turns out to be - lupus or something new.

Your grace is sufficient.

So I am not checking out. He won't leave me. Better yet, He will sustain me regardless of what the next hurdle is, no matter how little or big it is. If my God can be all in, so can I.

I'm not leaving.

Guest contributors - house projects!

Since I can't do any house projects right now, I thought I would provide some inspiration through two of my friends who have recently completed some amazing projects and were so kind to share some great pictures of their completed projects.

First up is the wall ledge that my fantastically design-gifted friend Pooja and her husband installed. I love how they did something outside of the box and didn't just do a collage of frames on the wall (nothing against collages of frames, I plan to have several in my house) but I love the ledge! And it will be so easy to give the room a fresh look just by rotating out the items on the ledge. Great work you two, your place is coming together so well!

Isn't that ledge awesome? And check out the texture in this room, beautiful!

Second, my roommate finished two projects that she had been planning for awhile.

Here is some wall art that she did herself - bought the stencils, stenciled the canvas, and then I showed her how to use the miter saw and she built the frame herself! She has created such peaceful space for herself.

Wall art up close

Check out this great photo collage she put together on her closet door. She designed the collage in powerpoint to make sure all the photos would fit on the door and then assembled it on poster board. She Mod-Podged the whole thing and then hung it on the door. Isn't that red trim great? Really draws the eye into the collage. Great work Claire!

Photo collage!

Hope you enjoyed the creative of works of my guest contributors Pooja and Claire. Thank you ladies for sharing your creative talents with all of us!

Sufficient

Exactly a week ago, I was sitting on the couch on Tuesday evening, having some hard talks with God about a lot of different things.

One thing that was very prevalent was how MUCH I want to be healed and how I was not happy with the way things were going. I cannot begin to tell you how NOT a fan I am of narcotics. I've probably blogged about it enough at this point, but I really don't like things that make one not in control of themselves, and narcotics is one of those things. God has been really working on me to be a big girl and take my meds when I am supposed to - actually, it's a thing of necessity now because I really can't tolerate the pain without them. But He's been working on me to not just take the meds, but to be thankful for them. I can't say I'm always 100% there, but I do find myself being more grateful, so yay for progress.

But, along the lines of not being happy with taking the meds, and very much wanting to be off of them so I can drive and go to work and "be back to normal", I was thanking Him for the insane number of people who have emailed me, texted me, dropped by for a short visit, called, etc, to tell me that they are praying for me. It's astounding really...and as I was thanking Him AND grumbling in my heart at the same time about being dependent on these pain meds and how no progress was being made, the thought came to mind "why can't the prayers be enough?".

Hmm... well, that's an interesting question.

"Even before a word is on my tongue, behold, O Lord, you know it altogether" - Psalm 130:4

"Do not be like them, for your Father knows what you need before you ask him" - Matthew 6:8

"Likewise the Spirit helps us in our weaknesses. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God." - Romans 8:26-27

God knows exactly what I need, even before I can think of a prayer to utter that need. He is showing His love for me by moving people to think of me and pray for me. So why can't I be content in the prayers of those He has called to pray for me? So I sat there on the couch, kinda staring up at the ceiling...and decided, I WANT those prayers to be enough. I want to be content with what He has blessed me with...so I prayed for that...I asked Him to allow the prayers of the saints to be enough for me. It was kind of like the father from Mark 9:24 and his reaction after Jesus heals his child "I believe; help my unbelief!"

And He has...helped my unbelief that is...ever since Tuesday night, I haven't been anxious or grumbling at ALL about how things are going, my heart has been quiet and still and peaceful about what He is doing. I never thought to ask for contentment in prayers and it's been such a sweet realization to know I can ask for that and He is faithful to provide for me - what grace!

I have been so encouraged by visitors who have shared with me what God is doing in their lives and been able to pray for so many people while I'm lying here, switching between bed and couch, depending on my mood. Don't get me wrong, it's not all spiritual stuff I'm doing here at home, I am very thankful for Netflix, Star Trek seasons available on Netflix (yup, nerd alert), and Pinterest - all great diversions for my foggy brain - oh just wait until I am back to my usual self, I've got tons of projects overflowing the filing folders of my brain! But it still has been a sweet time of learning more about Him and seeing Him tangibly at work in the lives of those around me. It's quite hard to see what I am seeing and not let out a contented sigh.

Constantly amazed by His grace. He is El Shaddai.

Another craigslist find!

So over a month ago, I found a great modern industrial lamp on craigslist. I emailed the gal and never heard back. Oh well.

Well, last week, she emailed me and said it was still available and asked if I still wanted it. Um,  yes please!

I was blessed with an easy pain morning last Saturday and took my Mom with me to look at the lamp.

 I had been eyeing this one at Urban Outfitters...price tag: $129

 Check out this craigslist beauty...price tag: $15

 

Not as fancy as the Urban one, but you seriously can't beat the price or the authenticity of this find :). It's got some great scuffs and dings too, uber industrial looking, and the height is adjustable.

By the way, that particularly awesome yellow beetle bag on my coat stand? Yeah, that was my "wow, it was a crazy busy day on console, I am going to go eat some Pinkberry" and somehow I ended up at Macy's where they were having a massive 75% off of their Fossil bag sale...so that's my Pinkberry-turned-purse purchase :)

Have I ever mentioned how much I like craigslist?

Ode to Innards

Respect your innards. It's not fun when they are mad at you.

Back in the spring, I had upper abdominal pain. It was uncomfortable, but not unbearable. I starting seeing a gastrointerologist, got an EGD done (they knock you out and stick a camera down your throat to take pictures of your insides), a CT, and all came back clean. Whew, thank you Lord. And the pain went away. And we all decided that it was serositis, a symptom of lupus, and well in line with everything else that had been going on.

Well, about a month ago, the pain came back. Thankfully, the pain meds I am on helped significantly and it wasn't that bad. But last week, it started getting a lot worse and the pain meds weren't cutting it.

I got my third Benlysta infusion on Thursday along with an appointment with my rheumo doc and he decided to add an IV of steroids to see if it would calm down the inflammation in the lining around my organs (the serositis - the cause of the abdominal pain). So my infusion took about 4 hours on Thursday - my friend Irma was a trooper to hang out in the waiting room for so long, thanks Irma!

On Friday morning, I was feeling worse and also feeling more side effects from the Benlysta. My rheumo doc called to check on me and I reported that the pain was the same. He had me come in for a second IV of the steroids in hopes that it would do the trick. Unfortunately, it didn't. The pain worsened over the weekend and I called him on Sunday to determine what I should do. Since the two IVs of steroids hadn't done anything, he didn't think the issue was inflammation, but something else, so he told me to go back to my GI doc and see what he thought. I called my GI doc that evening and left a message and popped some of the stronger pain meds (per my doctor's directions) I have in my ever-growing collection of pharmacopeia.

God was so good to allow my GI doc to work me in first thing Monday morning and after some questions and abdomen-poking, he deemed that another EGD was needed to see what had changed. So, dark and early Wednesday morning (literally, it was before 6am) my sweet friend Amanda picked me up and took me to the endoscopy center.

An hour and a half later, the GI doc was standing at my bedside as I blinked sleepily at him and told me that there were a lot of changes to my EGD - there is erosion at the juncture at the top of my stomach, a lot of inflammation, and (this is gross) food still in my stomach that shouldn't be there after fasting 8 hours. He said my stomach hadn't contracted the entire time he had been doing the scope, which isn't a good thing, it means my stomach isn't processing food correctly. This made a lot of sense because for several weeks now, the foods that I have been craving have been fruits and smoothies - things that are easily digestible. I find it incredible how the brain can signal the body to crave only what it can process - mind blown - but I'm digressing...I got to see pictures of my insides again and compare them to the pictures the GI doc took last time and the changes are pretty drastic - so I was relieved to know that I am NOT crazy for hurting so badly, there is a reason for all the pain.

So for now, I have to continue taking my pain meds until we can figure out what's causing these problems. I've got some scans and tests coming up that will hopefully pinpoint the issue. The pain meds make me very drowsy and fuzzyheaded, so I'm home from work until I can get off of them. My days are consisting of a lot of laying around and sleeping - since it hurts to move much. I am not a fan of narcotics but right now, I am grateful for them. And I'm so thankful for the wonderful friends that I have that have been taking care of me, and that my mom had planned a visit for this past weekend before things got worse and so she was here to help me out for a few days as well, which as you all know, nothing beats having your Mommy around when you don't feel well :).

So, respect your innards folks :)

Faithful

Two years ago on this day, I blogged about a particular Scripture that one of my sweet girls had sent me as an encouragement. I remember when I read it I was laying in bed, with the inflammation around my spine, unable to walk very well, and feeling very discouraged because I had hoped to sign up for a race that day and had come to the realization that I couldn't race.

Two years later, I find myself in bed again, unable to move very well due to severe abdominal pain, doped up on narcotics that allow me to not cry out and curl into a fetal position, but leaving me fuzzyheaded and unable to drive. In the last week, I have had one friend send me an amazing sermon on this Scripture and two friends send me encouraging words with this Scripture as it's base...apparently, God's trying to tell me something :)

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal" 2 Corinthians 4:16-18

Looking back over the past two years, He has been faithful. I am renewed each day by Him. I lose hope, struggle with the whys, cry out in frustration and pain, leap with joy when progress takes place, and He has been there, answering my prayers with answers I couldn't have planned or imagined, answers better than what I was expecting, answers different from what I was expecting and He gives me the grace to process and accept them. He is faithful.

So that's what I am reminding myself of today - His faithfulness. I'm a little daunted by the new challenges that I am facing with my health. But He was there for the last two years, and He will be there for the next two years, or however long I am in this particular trial. And He'll be there for the next trial, and the next one...He is faithful.

"The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him" - Lamentations 3:22-24