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

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.

Holy-a-bazillion-lessons-learned-and-tons-of-encouragement-received-Batman.

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

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?

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!