Update

I have some great news to report. That new pain med I mentioned a couple of weeks ago has allowed me to return to work! It has been so nice to go back and be productive and have some sense of normalcy back in my life. Learning how to manage my pain has been a lesson in trial and error. I've finally worked out what I think is the right timing. I set my alarm to go off between 2:30am and 3am, take the pain med, and then go back to sleep. By the time my "real" alarm goes off, the pain med has built up in my system sufficiently to allow me to move around with decent comfortability and to sit at work. Praise God! My GI doc and I are going back and forth on what to do next, since the pain hasn't changed in the month I have been on the stomach contracting meds. I've decided to get a second opinion because one of the options my GI doc is proposing is pretty "out there" and makes me nervous. So stay tuned on all that.

I found out the hard way yesterday that other timings of the pain med do not work. I turned off the pain med alarm went it sounded, but fell back asleep before taking it. I woke up at 530am, hurting badly, and took the pain med. Unfortunately, the pain med was never able to actually get ahead of the pain, so I had very uncomfortable day at work. When I am in pain, I tend to get very emotional, so I sat teary-eyed at my desk for a large portion of the day, sniffling and doing my best to focus on my work. Yes, I could have gone home, but I was being stubborn and trying to muscle through it - I just wanted to be normal again. I do have fantastic co-workers who have been so supportive and encouraging through all of this and I can share with them openly how things are going, so that made things easier.

I reached a point yesterday while driving home where I told God that I thought it was nice and all that He thought I was strong enough to handle all of this, but I really thought He was wrong, and there was no way I could keep going on in this fashion. I can't tell you all how tired I am of this trial, of hurting, of not being able to do the things I want to do. Enough is enough. I'm glad the Lord has patience with me and listens to me whine and whimper, and then graciously gives me the strength to continue through multiple ways. A dear friend sent me a John Piper (he's a pastor) quote that really encouraged me.

In Proverbs 31:25, it says "Strength and dignity are her clothing, and she laughs at the time to come." Proverbs 31 describes the godly woman that I strive to become. And this is what Piper had to say about this verse:

She looks away from the troubles and miseries and obstacles of life that seem to make the future bleak, and she focuses her attention on the sovereign power and love of God who rules in heaven and does on earth whatever he pleases (Ps. 115:3). She knows her Bible, and she knows her theology of the sovereignty of God, and she knows his promise that he will be with her and will help her and strengthen her no matter what. This is the deep, unshakable root of Christian womanhood. And Peter makes it explicit in verse 5. He is not talking about just any women. He is talking about women with unshakable biblical roots in the sovereign goodness of God—holy women who hope in God.

Wow right?

It was such a good reminder to me on what I need to be focusing on - not my pain, not my weariness, not my frustration, but the fact that I have a sovereign God who loves me and is working out His perfect plan in my life and that my strength comes from Him and Him alone. It never ceases to amaze me how quickly He can have me do a 180 in my attitude, but that happened yesterday afternoon, and despite the pain of the day, I arrived home at peace and feeling blessed.

Thank you diligent readers for continuing to follow this journey that I am on, I am sure you tire as well of hearing reports that vary little and seem to be dragging, but I appreciate your concern, caring, and prayers. There is good coming out of all of this. And He is being glorified. 

Weekend project

With my head clear, I was finally able to make some design sense of frames and a blank wall space I had been staring at for weeks and since I am driving again, I managed a trip to Home Depot to grab a couple of packages of hangers. The result is this - a much more homier dining room/entryway!

I used some newspaper to get a feel for the layout that I wanted and voila!

Clockwise from top left: rocketship print from Etsy, watercolor from Prague of the Charles Bridge, llama print from Etsy, two 8 X 10 canvases I had printed with pictures I took in Budapest, Hungary of the Parliament building and of some men fishing in Kerala, India.

On the entryway wall, I hung all those 5X7 black and white pictures I've taken during my travels. I did the same thing with the newspapers to get a feel for a layout and then hammered away!

Ta-da!

Wide shot

Sidenote: several people have recently asked me what those Greek letters say. It's pronounced "koi-nee-nee-ah" and means "fellowship", because that's what I want my house to be about. People hanging out and having a good time. :). Stuff on the walls just makes a place look more lived in. I am liking the updates!

New med

On Friday, I started a new pain med. What is great about this med is that it doesn't give me a fuzzy brain and I can focus. I've finished two books since I started it (I can focus now to read) and I started driving again, it felt awesome to be able to go out and not have to call someone to pick me up (although I very much appreciate all the willing folks out there!)


The not-so-great thing is that it doesn't knock out the pain like the Vicadin does, so I am in a constant state of uncomfortable. It's not awful, but it's enough to remind me that I don't feel well and to squirm a bit (I may have told my roommate that I wish I could just remove my abdomen completely, she politely asked me not to). I did manage to sit up during the sermon at church and for lunch afterwards, so that's progress! So much so, that I told my bosses that I plan to work from home for a few hours on Tuesday and Wednesday and see how I do sitting up. I am crazy excited to work again! So right now, I've decided it's worth the pain/uncomfortableness to not be fuzzy-headed.

Keep those prayers coming for the pain to diminish - I am starting acupuncture again tomorrow and I am hoping that will help with things. I also have a long list of questions out to my doctor regarding why two weeks have passed on the the stomach contracting meds and there has been no change to the pain. Hoping to get some answers. Appreciate all the encouraging thoughts, prayers, and notes you all have been sending my way. Thanks so much, I am blessed!

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.