Thursday, November 29, 2012

Ciao! and travel adventures

Amazingly, I was able to travel to Italy last week. I had several "is this really happening? Pinch me please" moments during the trip. Three months ago I would have never imagined I would physically be able to do the trip, I wouldn't have fathomed traveling thousands of miles away from the safety net of my home, my doctors, and American medicine had provided over the past four months. I'm so glad the Lord brought this opportunity into my path and then allowed me to go...and to have fun! :)

My most favorite memory from the trip was waking up early to catch a train to another town in Cinque Terre, a string of five towns on the eastern coast of Italy, on Thanksgiving morning. The town was quiet except for a few folks headed out to work. We stopped for coffee and croissants (I munched on a protein bar - so glad I brought those!), watched the locals sip coffee at the counter standing up, watching the news that was on in the corner television, laughing, greeting each other, glancing over at the four tourists seated at a small table, and then heading out for a days work. As we walked along the coast, I told my friends that it was too bad the trails that linked the towns together were closed, because I had seen an amazing picture of a man carved in stone, holding up a house, that was along the trails and I had really wanted to see that in person. As we walked down onto the beach, I yelled...because there, at the end of the beach, was the stone man holding up his house. Unexpected blessing.

The stone man in Monterosso, Cinque Terre

Up close of the stone man

Dawn over the Mediterranean

We spent the next hour or so walking along the beach, I learned how to skip rocks on the water, the Mediterranean  no less!, and I collected broken pieces of terra cotta tiles that were strewn on the beach to someday glue onto canvas and display in my house. It was a beautiful morning.

Our trip took us from Milan to Florence to Cinque Terre to Venice and then back to Milan. Traveling from town to town was easy with our Eurail passes and I was very thankful that the guys had Italy apps on their phones with maps of the cities so we were able to find all the museums, bridges, and churches we wanted to explore (and find our way back to where we were sleeping that night!). We got to see the David, works painted by Michelangelo, Da Vinci, and Donatello (actually, I don't think I saw Donatello's but it was in a church that we went in, I just never saw it :) ), amazing architecture, streets teeming with history in their cobblestones, got lost in Venice, and I probably quoted my favorite traveling buddy, Rick Steves, about a bagillion times, and all in all, made the most out of our seven days there.

The Duomo in Milan

The Duomo in Florence

Painted ceiling of the Florence Duomo

My friends and I headed out to explore Florence (we walked for about 13 hours on this day :) )

Bridge view in Florence

Galileo's tomb (if you haven't read "Galileo's Daughter," you should)

My favorite of the Cinque Terre towns, Manarola

In Vernazza - Cinque Terre

After an afternoon train to Venice, we celebrated Thanksgiving with a traditional...Italian meal :)

Oh the streets of Venice - we got lost so many times!

Part of St. Mark's Square in Venice

Venice near sunset

So there's a story to the above picture. I almost ended up in the Mediterranean trying to take it. I was walking towards the edge of the canal to get the shot and looking in my viewfinder of my camera as I did so...I KNOW I would not have walked into the water, I was aware of where the edge was, however, I was not aware of the puddle of water, on marble, right under both of my feet and when I hit it, BOTH feet shot out from under me...I heard a bunch of gasps behind me, somehow landed on my feet with a bit of a stumble, took my shot, turned around and saw a group of old Italian men grinning and shaking their heads at me. I assured them I wasn't planning on taking a swim and rejoined my friends, who had missed the whole thing and were wondering why I was cracking up. :)

Gelato :) I ate a lot of this. A lot. 

Yes, I will admit that I wish my stomach would have behaved a bit better, and I wish I would have been able to eat the food there (alas, gluten!), and I wish Italy sold Mountain Dew Code Red :), but I was blessed with friends who were patient and didn't make me feel bad when I asked to sit down to rest, or made multiple pit stops, or had them looking for a restaurant that had risotto or vegetable soup (the two meals that were definitely gluten free and that my stomach was tolerating). But all those wishes made for some good prayer time with the Lord as I had to work on my attitude. No, I didn't feel like I wanted to, but He still sustained me and allowed me to laugh and to drink delicious Italian coffee and to see amazing sights...and to add a bucketful of good memories to my life. I think I ended up appreciating the trip more than I would have if I had been feeling 100% and for that, I am thankful.

Monday, October 22, 2012

A lot of medical stuff and then some fun stuff

Apologies for the lack of updates, but I’ve really been in matinenance mode for the past several weeks. I’m going to provide a pretty lengthy update, so feel free to skim (however, make sure to read the last couple of paragraphs for an exciting development!), but I’ve had enough questions asked that I figured it was time for an update.

The good news is that the pain meds and the stomach meds are doing a decent job of controlling the pain – most of my days are pretty good, a few of my days are more on the uncomfortable side where I just want to chill in bed and rest, thankfully the intensity of those days is less than it used to be. I think that is because my insides are slowly starting to heal from all the erosion and stuff that has been going on. It turns out that the stomach med I am taking (the one that controls acid) is actually working – I know this because I ran out about two weeks ago and since there were some communication issues between my pharmacy, my insurance, and my GI doctor, I got to experience being off of the meds for almost two weeks, during which my pain levels increased, so the med is definitely helping my controlling my acid production.

My other stomach issue, the paralysis, is currently untreated. It’s a long story but because I wasn’t convinced that my GI doctor’s next plan of attack was the right way to go, we experimented by ceasing the stomach contracting med to determine where the pain was coming from, the paralysis or something else. After four days of no stomach contracting meds, I was to report back to my doc. I did and am still awaiting further instructions. While I’m pretty frustrated with my GI doc right now, at least this almost four week span of no stomach contracting meds has shown that the paralysis isn’t causing the more intense pain, just the nausea-stomach-full uncomfortableness I experience when I eat.

 Almost in parallel, my rheumo doc and I have been conducting our own experiments. Six weeks ago, during a routine visit, he asked me if it wasn’t for the GI issues, how would I be feeling? I told him I think I would be feeling better, I wasn’t noticing any joint pain, I didn’t have fatigue (besides that from the heavier pain meds), and no fevers. Considering that I am on a ridiculous amount of medication right now, and if the Benlysta is working, there is no need to be so medicated, so we decided to reduce two of my immunosuppressive meds. About two weeks into the “experiement”, my joint pain started coming back, as well as the fevers and fatigue. I put up with it for about two weeks until it started interfering with my sleep and then I cried “uncle” and called in to tweak the meds. We decided to increase one of the meds back to the initial dose but keep the other the same. The joint pain got a little better, but my fevers continued – I was spiking a fever between 99-100 several times a day, and we all know how fevers make you feel.

This past week, after dealing with the non-communicating GI doc, unsuccessfully trying to get into two different new GI docs for a second opinion, and having a rough pain and fever day, I had another appointment with the rheumo doc. He walked in and said “how are you feeling?” and my response was “generally, things are better, but today is bad” and he said “yeah, you’re looking pretty puny”. Gee, thanks doc.

I relayed to him all the GI drama and he stormed out of the room and returned a few minutes later with his arms full of my stomach med samples. Thanks to him, I now have two months worth of my meds, saving me a LOT of money and hopefully a lot of pain. He then stormed out again, proceeded to call one of the other GI docs who I had tried to get into see and arranged a placeholder appointment for me, all I had to do was call in and give them my info.

 I sat there, stunned, almost ready to cry, reminded that there are doctors out there that really care about their patients and have their best interests in mind and I was reminded of the hinds feet that He is growing through this sometimes frustrating process: “He made my feet like the feet of the deer and set me secure on the heights" (2 Samuel 22:34, similarly Habakkuk 3:19). I had been grumbling about the inattentiveness of my doctors and not reminding myself of how my God is providing for me, even when I can’t see how things are going to work out.

Since my lupus symptoms are unstable right now with the almost constant fevers and joint pain, we’ve had to increase my immunosuppressive meds again. Surprisingly, I am not that disappointed about this. I think I am getting more used to this being my “normal” state and I found myself being less bummed and bitter about having to ingest more medication. I’m thankful to the Lord for how He is changing my attitude and making me more adaptable and accepting of things. Again, proof of the lessons that He is teaching me as those deer feet are growing (um, if all this deer feet stuff is weirding you out, check out my blog post on it, it might make a little more sense...or not...shrug...but I am most happy to answer any questions about it!).

But the incredibly great news, which will probably seem surprising after reading all this medical stuff, is that my rheumo doc actually cleared me to take a spontaneous trip to Italy next month with some friends (yeah, you read that right, Italy :) ). So many doors have opened to make this trip possible and I am really excited to do something I absolutely love to do – travel to and explore new places with great company. I’m taking my usual pharmacy with me :) as well as some additions my rheumo doc is sending along just in case. He is also putting together a folder with a summary of my medical history in case I need to seek medical attention while over there. And I am purchasing special travel medical insurance too. Of course, if something healthish changes between now and then, I will be wise and cancel the trip, but I am hoping and praying that this will all work out.

I am thrilled that I can actually contemplate going overseas right now. Even with the joint pain and fevers, I’m so much better than I was a couple of months ago, the meds are working well, and the friends I am traveling with know my issues and potential limitations and will be looking after me. I love how God’s plan has these unexpected blessings – I never would have thought of a trip, but He did. I was too disillusioned with my GI doctor to see the blessing of my rheumo doc, but He reminded me. What a gracious God I have who patiently redirects my attention back to His grace and mercy, rather than my own grumpiness and lack of faith.

Slumber Party!

I haven't had a slumber party in...a really really long time. So when I started hanging out with some of the younger gals from my church, I thought a slumber party would be a great way to get to know them better and to have a lot of fun. This was a long-awaited for event, as our first attempt was canceled due to my health. These sweet girls have been so patient and think we all decided it was worth the wait! We had a blast making our own pizzas, decorating letters, eating rootbeer floats, painting our nails, and watching movies until...really early in the morning :). I am one blessed woman to have friends like these girls.

Making pizza and eating pizza!

Lovely girls working on their crafts

Enjoying some rootbeer (or cream soda) floats

What the room looked like the next morning :)
Pancakes for breakfast

Sweet girls

Thursday, October 11, 2012

Growing Hinds Feet

I just finished reading this phenomenal book called "Hinds Feet on High Places." It is about a woman named Much Afraid who has a physical disability (she has crooked feet). She is on a journey to the High Places to live with the Great Shepherd. Her companions on her journey are Sorrow and Suffering and as she travels, she encounters people who would like to distract her from her journey. These people are named Fear, Self-Pity, Bitterness, Pride, and Resentment. Along this journey, the Great Shepherd promises to change her crooked feet into feet (Hinds Feet) that will be able to run and bound all through the High Places.


You all should just start calling me Much Afraid, because I am SO her. At first, Much Afraid is frightened by her companions, Sorrow and Suffering, they seem forbidding and scary. But then, she starts to see how helpful they are at teaching her things and helping her through some of the challenges she encounters. They strengthen her and guide her, and they eventually all become friends. I can relate so well to Much Afraid here. Sometimes I stare into the face of the next wave of pain and think "there is no way I can do this." And I want to give up. And then, the remembrance comes of a past sorrow or suffering and how I thought I couldn't get through that, and I did, by His grace. And I think on what helped then, and apply it to my current situation. Sometimes I do that consciously, sometimes, I am too afraid to think straight and it happens anyway, a Scripture verse, a past encouragement from a friend, something will pop into my mind and it will pull me back from the edge and suddenly, I know I can handle what is ahead. I don't know how I will handle it, but I have a peace that He will give me the strength to handle it.

There is a part in the book that made me cry with the truth of it and how well I could relate. Much Afraid and her companions are taking shelter in a small hut in the Forests of Danger and Tribulation while a massive storm rages outside. As Much Afraid sits inside, thinking over her journey so far, she has the following thought:

"It seemed as though her senses had been quickened in some extraordinary way, enabling her to enjoy ever detail of her life; so that although her companions actually were Sorrow and Suffering, she often felt an almost inexplicable joy and pleasure at the same time. This would happen when she looked at the bright, crackling flames in the log fire, or listened to the sounds of lashing rain overhead emphasizing the safety and peace within the hut, or when she saw through the window the tossing trees waving their arms against a background of scurrying clouds or lightning-rent sky. Or again, very early before daybreak, when she saw the morning start shining serenely through a rift in the clouds or heard the clear jubilant note of a bird during a lull in the storm."

Over the past, well, going on 2.5 years now, I feel that MY senses have been quickened. I notice and appreciate things in life that I never would have noticed before - part of it is learning how much I take certain things for granted, but it's more than that too.  The joy and elation I receive from seemingly simple experiences like having dinner with a good friend and talking about everything under the moon for hours or my friend's little girl running up to me at church to greet me and cling to my leg or chatting and laughing with my coworker or talking with my nephews on FaceTime or hearing about what the Lord is doing in a friend's life. All of these things seem so much sweeter to me these days and I am so thankful for the ability to appreciate these seemingly simple experiences in a deeper way. It's hard to define in words, but it is such a deep rooted feeling of happiness and contentment that I start grinning pretty idiotically when I think about it :). 

How in the world can I feel like that when I am physically and sometimes, emotionally, suffering? I can only point to Him, because I know I am not capable of being THAT optimistic or positive about things. And then I start thinking about how He provides for me, and that feeling of deep rooted joy just grows. What have I done to deserve such a blessing? Nothing. Yet He loves me so much that He chooses to teach me and bless me. I'm discovering that although the lessons may seem hard, and even insurmountable at times, there is always something good in the lesson. It's packaging may be different than what I expected, but I am finding that if I wait, and pay attention, and trust, the good starts to unfold, sometimes small, and sometimes astounding in its greatness. I wouldn't trade all the difficulty of these lessons for what I have learned through them.

So this journey continues, with companions that I may not have chosen for myself, but I trust that He has chosen them to help me grow my hinds feet.

Psalm 16
Preserve me, O God, for in you I take refuge. 
I say to the Lord, "You are my Lord;
I have no good apart from you."

As for the saints in the land, they are the excellent ones,
in whom is all my delight

The sorrows of those who run after another god shall multiply;
their drink offerings of blood I will not pour out 
or take their names on my lips.

The Lord is my chosen portion and my cup;
you hold my lot.
The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.

I bless the Lord who gives me counsel;
in the night also my heart instructs me.
I have set the Lord always before me;
because he is at my right hand, I shall not be shaken

Therefore my heart is glad, and my whole being rejoices;
my flesh also dwells secure.
For you will not abandon my soul to Sheol,
or let your holy one see corruption

You make known to me the path of life;
in your presence there is fullness of joy;
at your right hand are pleasures forevermore

Monday, October 8, 2012

A taste of Fall and Bookends

My fall decorations look the same as last year, but I do have one addition since I now have the dining table:

Fall leaves, pumpkins and gourds, and gilded scrapbook paper for placemats. Ahh, fall :)

I've been slowly collecting bookends to grace the shelves in my bedroom.  Most of them are from this online store called One Kings Lane - twice every day they have certain items for sale at really good prices and I've found three pairs of bookends there. The yellow "The End" sign was a score from my favorite store CB2.

Hello Mr. Owl

"The End" and Mr. Rhino

The group

See the bicycle bookends on the middle shelf?

Saturday, September 22, 2012


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. 

Wednesday, September 5, 2012

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!


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!

Monday, September 3, 2012

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!

Monday, August 27, 2012

Being steadfast amidst the ups and downs

image courtesy of

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 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 :)

Wednesday, August 22, 2012

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 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

Tuesday, August 14, 2012

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 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'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.

Thursday, August 9, 2012

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!