Hesed

The mind is a funny thing sometimes.

Yesterday was infusion day. I wasn't feeling great, but was still better than I have been in past months on infusion day. I walked into the infusion room and there was just one other gal sitting in there. I had never seen her before and I know I would have remembered seeing her - she was young, probably my age or a year or two younger. It's usually older people in the room. She looked pretty peppy, but didn't seem interested in conversation as she kept her head down in the book she had brought. I was kinda bummed, because I enjoy visiting with people in the infusion room.

My infusion nurse hooked me up and within about twenty minutes, I started feeling pretty bad. My head felt like a headache was about to start, which I have heard happens to some folks during infusions, but has never happened to me. My head felt thick and fuzzy, like my thoughts were all moving through some thick fluid. Apparently, I fell asleep, because I awoke to the nurse removing the line from my arm. I noticed Peppy-Girl was asleep in her chair as well. I headed to the restroom, a must after getting a liter of saline pumped into you :) and had one of those "yikes, what happened to my face!?" moments when I glanced in the mirror. I looked so tired and pale and sick.

Peppy-Girl and I ended up riding the elevator down to the parking garage together and I noticed she wasn't Peppy-Girl anymore, but Tired-and-Drawn-Girl. She commented to me how tired the infusions make her. I agreed, although, I had never connected my sleepiness during infusions to the drugs themselves, I figured sitting in a comfy big chair and just relaxing was causing me to be sleepy. I had never experienced the physical roughness of an infusion, during the infusion, until today.

My infusions take place up in the medical center in Houston and it's a long drive back to my house...through rush hour traffic, so I usually head over to my friends' who live about ten minutes from my doctors and have dinner with them and their kiddos and wait out the traffic. As I was driving over there, I was overcome by how poorly I was feeling. I got a bit teary-eyed. I pulled into a Starbucks to grab my usual reward for getting an infusion (and a much needed pick-me-up at this point!) As I waited in the drive-thru line, my mind wandered to a chapter I had read recently in some book about a Hebrew word that meant "goodness."

As I drove to my friends' house, I thought about how good the Lord was to allow me to have friends with cute kids to snuggle with after my infusion and good food to eat with them rather than sitting in Houston traffic for over an hour.

I thought about how good the Lord was to be able to have a conversation with Peppy-turned-Tired-Girl  and that we were able to share and sympathize with one another.

I thought how good the Lord was to be able to allow me to feel so poorly, because that meant the drugs that I had just been given were working to make me feel better. That little B-cell killers were waging a war at that moment in my body to push back the crazy Melissa-immune system and calm them down.

And I thought how good the Lord was to allow me to see His goodness, rather than feel sorry for myself or to continue thinking on how I was feeling at that moment.

The mind is a funny thing. Because that entire drive - to my friends house and home again - I couldn't think of the actual Hebrew word. It took me fifteen minutes to finally find it (I'm reading too many books at the same time right now). The word is "hesed" and it is the Hebrew word for "goodness." How wonderful and funny - that in the moment when I very much needed to remember His goodness, my mind called up a memory of reading about the Hebrew word for goodness.

Wonderful and funny, yes. But also, just another example of His hesed towards me.

Playing with these cute kids in their fort before dinner :)

One year later...musings and summation

I realized this past week that it has been exactly one year since some tests results showed my innards were all torn up, cause unknown. A whole year. It seems longer than that, not because time has dragged, but because of all I have learned and how I have grown over that time.

The stomach pain is oh so much better theses days! Some days, it's not even there. On the worst days, it's still not comparable to what last fall was like.  I still take a strong daily pain med, but recently got a prescription that will allow me to attempt reducing the dosage. A missed prescription refill a couple of months ago quickly showed me that I can't go completely off the pain med yet, but here's hoping to reduce the amount I need to keep the pain under the "noticeable" threshold. Baby steps! (Still no smoking gun on the cause, but I've got a theory that's soon to be tested and of course, the lupus is a major suspect).

I seem to be responding well to the Benlysta and I feel that my lupus is more controlled than it was a year ago. In fact, :exciting news: I have reduced the dosage of one of my immuno-supressive meds by half! It's taken eight months to slowly reduce it to see how my body reacts, but so far, doing pretty well. I say pretty well, because I tried the next step of reduction recently, and my body didn't like that, so waiting for this minor flare-up to settle and to just stick to my current dosage for now. I am ridiculously excited to not be taking such a mega dose of this medicine, so praise God for progress! :)

While predictability has been such a welcome reprieve, I continue to take one day at a time because things do go wonky from time to time and I think "whoa, what happened here?" It's a reminder that this thing called lupus and autoimmune diseases are not predictable and oh-so-sensitive to...pretty much everything :). And a reminder to not put my trust in patterns or predictability.

In my mind, the most impacting result of this last year, is the still and quiet place that the Lord has grown in me. That, my friends, is the most amazing, wonderful thing that has happened to this gal who always read the verse "gentle and quiet spirit" (1 Peter 3:3-4)  or "be still" (Psalm 46:10) and threw her hands up, knowing that her crazy, energetic, fast-talking personality would never allow her to be that way.  I've learned that quiet and stillness isn't a reflection of personality or physical action. It doesn't mean I sit there and do nothing, or never talk (pretty sure pigs will fly when that happens :) ) but it means that when things are crazy around me, when my sense of control (yes, it is a "sense") is lost, there is a deep-rooted center in me that is calm, still, and quiet. Waiting. Ears and heart open to the Teaching that is to come. To the Discipline that is to be learn. To the Love that is to be experienced.

Yes, there are still moments where I think, "hmm, maybe I was mistaken", when my thoughts and heart are all a-thunder with doubts and frustrations. And let's face it, gentleness is still a work in progress. But He brings me back. He "calms the raging storm." He is my quietness and my stillness, forged from a trust in Him that He has grown in me.  Oh, how I sought for this and tried to make it happen on my own terms (hello December, January, and February), but He has taught me, yet again, that His ways are better and His timing perfect. Nothing that I could accomplish, but only Him.

Do I wish this last year had been different? YES. A resounding YES complete with blinky font and lights. I despise pain, suffering, feeling miserable, and the isolation that all of that sometimes brings. But, I can honestly say that I don't know how else I could have been pulled so far out of myself, so completely stripped and made raw, for Him to do the refining work and instructing He needed to, without the events of this past year. So, I wouldn't change it (I may try to blot it out from time to time ;-) ), but I wouldn't change it. What grace.

Summation

Stripped

Red, raw, bleeding

Endless flowing tears and pain unceasing

Aching, groaning, ripping, tearing

Floundering...flailing...

crawling, grasping

broken, arms thrown, surrender

Waiting

Tugging, closing, wounds stitched together

Presence, soothing

listening, seeds planted, growing

roots deepen

Breathing, resting

steadiness reborn, stronger

coolness, quiet, beauty from ashes

Him, not me

What grace.

The Therapy Room

At the end of every month, I take a half day off of work and head to the Houston medical center and my rheumatologist's office, where a room full of recliners, pillows, warm blankets, and IV poles awaits me. My infusion nurse, Jessie, takes my weight, blood pressure, and temperature (my meds are calculated according to my weight and if my temperature is too high, it could be dangerous for me to get meds since the meds suppress my immune system even further). I pick a recliner to lounge in and Jessie starts the twenty minute process to dissolve my meds in some solution. My IV is started and the very slow drip starts. We had to slow the drip down about four months ago because my infusions were starting to hurt. My veins have built up scar tissue from the number of sticks and IVs, and infusions can be pretty uncomfortable if the drip rate is too fast. Thankfully, a slower drip rate has made the infusions pretty much painless. But, the slow drip rate means sitting in that recliner for three hours as the biological cell-killing meds drip into my veins.


All around the room are other infusion patients, at various stages of their infusion, reading books, napping, and usually, chatting with other patients.

Many of us are on the same monthly schedule, so there are familiar faces, lives lived over the past month to catch up on and ample time to commiserate, share, and encourage one another in the health trials we are all walking through.

I've talked with a woman in her eighties, all dolled out in flashy bling, who has rheumatoid arthritis that has stolen away her ability to play her beloved piano during the late afternoons when her loneliness is the worst. We talked about other things that she might be able to try when the sun started its descent that would still bring distraction and memories of happier times.

I've spoken with a man in his early forties with neural sarcoidosis, who recently had a port installed (a semi-permanent IV near the collarbone to allow those who need frequent needle sticks to save their veins). We talked about our mutual love of travel, although he was now confined to the forty-eight states due to the complications of his diseas. His envy that I was still working was apparent and saddening...his disease had debilitated him to the point of not being able to function at work, and he spoke of all the friends he had lost, they didn't understand why he had to cancel plans so often, or why he wouldn't hang out like he used. "It's not that I wouldn't, it's just that I couldn't, or can't" he stated sadly, "you know how it is." I hesitated at first, not wanting to rub salt into a wound, but decided to press ahead, "well, I do know the frustration of having to constantly cancel plans because the Disease decides to mess up your plans, but I've been blessed with incredibly understanding and curious friends and family. I'm thankful for that." He smiled, again sadly, "wow, you're lucky." He paused for a moment, then starting telling me about his amazing wife, how she supports and sticks with him through the ups and downs. "Yeah, I'm lucky to have her." You are blessed sir, very blessed.

Last month, a woman in her late thirties hobbled slowly into the room and painfully lowered herself into her recliner. "Rough day?" one of the patients asked her. Nodding slowly, eyes filling with tears, she uncorked the last month of pain and suffering, sharing with the only people who can truly understand her frustration, discomfort, and at times, hopelessness. Not missing a beat, every single person in that room started offering suggestions, different pain meds that have worked for them, diet changes, specialist recommendations. She pulled a notebook out of her purse and started scribbling down the information that was flooding her way. She looked up and smiled for the first time since walking in the room. "Thank you all so much. I love coming here, because you all understand what this is like. It's like group therapy in this room!" We all laughed.

My infusion is tomorrow and I'm nursing swollen fingers, ankle, shoulder, and hip joints right now, taking tylenol to keep my fever down and thinking about who I will see tomorrow at my appointment. My infusion buddy Candace moved her appointment time so that she would start hers at the same time as me (she usually comes in at the tail end of mine). She has spondyloarthropathy (an autoimmune disease that affects the spine), is a preschool director at a local church, and has one son in the Navy and the other at Texas A&M. She has a Texas drawl and is always smiling and telling everyone she is a troublemaker (this woman has had more leaking issues with her IVs than anyone I've seen :) ). I'm looking forward to catching up with her.

Infusions have become more than just getting relief from the lupus symptoms that creep back in as the previous infusion wears off. It's a time to rest, sit, visit, and reflect on all that I do have in my life, the blessings, the small things I can be thankful for, and to be able to share, as opportunities come up and people ask, what He has done in my life. I walk away every month with a list of new prayer requests to pray for, to take my mind off of myself, and intercede on the behalf of others. And for me, that is the real therapy in that room.

Um, chewing is awesome.

Yes folks, I have a new appreciation for my teeth and jaw and the act of chewing one's food. After being on a liquid/mushy food diet for a little over three months, my stomach has been able to tolerate small amounts of solid foods for the past two weeks. Chewing your food rocks.

After some major issues during my Italy trip, I went through another series of tests and poking and prodding in December and January. Eating had become so painful that I couldn't keep anything solid down. So I put myself on a liquid/pureed food diet with my doc's support. Pureed foods even over Christmas. You should have seen the look on my family's face as I blended the Christmas ham with other side dishes into a color that should not be eaten and then proceed to slurp it down. It actually was tasty. Truly. As long as you didn't look at it :).

The last gastroparesis test was normal, a good thing, but definitely not helpful in figuring out why I am having such trouble eating. Several other tests were fairly normal...no "smoking guns" as to what the culprit is. My GI doc and rheumo doc are conversing and we've done some additional tests for rarer auto-immune diseases. All normal thus far. It never ceases to amaze me what we can do with medical technology and...how much more I wish we could do with it. Seriously, someone needs to invent the tricorder. Now please. But I do appreciate how my docs think outside the box and work together. It is such a blessing and help.

I'm happy to report that January and February were, in general, good months in the sense that things have stabilized and been consistent. My pain levels are tolerable. Even if I sleep through my 2:30am "take your pain med alarm," and take the med hours later, it is able to catch up with the pain after about 4 hours, which was not the case a few months ago when a missed pain med dose usually meant the entire day in bed, so that is a huge improvement.

My lupus flared a few weeks ago. It was my first flare since starting the new medicine in June and it was pretty rough. I couldn't walk much due to the joint inflammation and my stomach pain got pretty bad too. The nurse at the rheumo doc's office probably thought I was crazy because I was so excited that both my stomach and my joints started hurting at the same time...but it's a really good data point to support my GI doc's theory that my GI stuff is all auto-immune related. A healthy dose of steroids stopped the flare after just two doses! And the stomach pain lessened as well. Another data point! And a huge victory that I was responsive to the steroids...it's been touch and go with how well they have been working.

My joints in general have been acting up more...most likely due to weaning myself off of one med (with the doc's approval of course). I'm back on it again (bummer), but if that's what I need right now, then I'll be a big girl and swallow my pills. Still waiting to see if the joints will settle down, but they are much much better than they were during the flare.

Still, my biggest excitement is eating solid food again. Small portions and not at every meal. But oh my goodness it is awesome to to chew again!

Sometimes I feel like I'm turning into that woman - the one who only ever talks about her latest ailment.   I know I do talk about it quite a bit, but only because it's a big part of my life right now. Lord willing, that won't always be the case, or I'll learn how to balance things better, but I am so thankful to my friends and family that let me talk it out and listen and support, encourage, and pray for me. I have to make a lot of decisions sometimes at the doctor's office or over the phone with the insurance company, and it's nice to be able to share with someone the trades I had to make, or the concerns I have. I have so many wonderful listening ears and caring hearts in my life. And I have the Lord, who is with me always, even when it's just me sitting in the room waiting for the doctor to come in.

Thank you Lord, for your provision, sustaining grace in my life, patience with my ups and downs, and mercies. And for the quiet stillness that you allow me to find when everything else seems to be falling apart.

"He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, "My refuge and my fortress, my God, in whom I trust" - Psalm 91:1-2

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.

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. 

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

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.

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 :)

Bring on the Benlysta!

I love how perfect God's timing is. This past week was challenging from a pain-perspective. It started on Sunday - I don't know if I took the pain meds too late or what, but they barely made a dent in helping...and I took the full 4 doses over the day. And then the serositis came back...

I don't think I ever blogged an update about this, but the stomach/abdominal pain that I was experiencing throughout most of the spring (and had all those scans done) turned out to be serositis, which is the inflammation of the lining of the heart, lungs, and/or abdomen...and a symptom of lupus. Mine is currently affecting the lining of my abdomen although I have had it affect my lungs (that's called pleurisy and I had it several times in college, so even back then, things were starting to point more to lupus) It's pretty painful and it makes me feel sick to my stomach, which takes away my appetite, and well, the whole vicious weight cycle thing begins. Thankfully, the serositis has subsided for the most part over the past couple of months and the steroids I am on helped me to gain several pounds back. But on Sunday, my stomach started hurting again and it's been that way all week.

On Wednesday, I called the insurance company and they had approved the Benlysta! I called my doctor and they scheduled me for my first infusion on Thursday! I was so excited I couldn't talk to anyone because I knew I would burst into tears from thankfulness - here I was, getting myself ready to handle the serositis again and the nagging suspicion I have that the current dose of pain med isn't enough (my body tends to build a tolerance to medicines very quickly) and God moved all the paperwork through and got me an appointment immediately. Such mercy!

So the way the infusions work is that I go in every other week for six weeks and get a infusion. An infusion means the medicine is administered via IV. After the first six weeks, I get the infusions once a month.

On Thursday, my friend Lisa picked me up and drove me to the doctors (they give you benedryl in case you have an allergic reaction and the benedryl makes you really woozy and unable to drive. Also, they want someone there in case you have a freak response to the drug).

Super excited to have this needle stuck in my arm :)

The infusion took about two hours since for the first one, they administer the Benlysta slowly, in case you have a reaction to it (from now on, it will take about an hour). I was a bit drowsy from the benedryl and had to force myself to focus so I could chat with Lisa, but I had no problems during the infusion. The nurse told me I was the 9th patient in their office to receive Benlysta and all the other patients reported pretty severe flu-like symptoms for 3-5 days after the infusion - severe fatigue, body aches, fever, and nausea. This matched with all the research I had done.

I was feeling okay after the infusion and just took it easy at home. Around 6pm, it suddenly felt like my limbs weighed a thousand pounds and I could barely keep my eyes open. I was so incredibly tired and was shocked by how fast the fatigue came on! I ended up going to bed about a half hour later and woke up several times during the night afraid I was going to vomit, but thankfully, I didn't! I felt pretty decent the next morning (my usual morning "normal", which for me is mild joint pain and mild nausea). I went to work and did just fine. I started getting tired in the afternoon and by evening, was pretty zapped. I woke up this morning after a good night's sleep feeling like I had just pulled an all-nighter and have been dragging all day (despite a healthy caffeine intake :) ), so I can say I am definitely experiencing the Benlysta side effects, but very mildly so - I am so incredibly thankful for that!

So the forward plan is continue with the infusions. After about 3- 4 months, if I start responding to the Benlysta (it can take a couple of months to notice if it is working), we can start weaning me off of my other meds...so for the next few months, I'm going to kinda feel like Chemical Woman - lots of chemicals running through my veins :). I am really hoping that this new drug works for me - it would be amazing to feel like I did three or four years ago when my disease was pretty much in remission. I can barely remember what it felt like to not hurt constantly and to have energy. Such a good reminder for me to not take good health for granted and to do what I can when I feel well. My disease started to destabilize two years ago and it's been a hard and growing journey, one I wouldn't trade because of all that God has taught me.  I know this new med may not solve everything, but I feel like a new chapter has started. 

Forward plan

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

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

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

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

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

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

Unexpected Second Opinion

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

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

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

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

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

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

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

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

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

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

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

My antibodies are raging war here...

Yes, it’s true. My antibodies aren't a fan of me.

So the last you heard of the medical saga was that I was going to get a CT done for the stomach pain. I got that done and it was all clear. Good news, but still begs the question - where is this pain coming from?

Another trip to the Rheumo doc (that’s waaay easier to type than rheumatologist) earned a “we’re missing something. Something else is going on”. So he started brainstorming. And I mentioned getting a second opinion (I’ve been doing some research on my own), and he heartily agreed because I think he’s at the end of his options with me. So he sent me to an infectious diseases doctor.

Why infectious diseases? It was actually a brilliant piece of his thinking outside the box in my opinion. I travel a lot. We just suppressed my immune system even more about 8 weeks ago, which was when I started having more (and new) symptoms. So maybe I had picked up something during my travels that was dormant or that whatever semblance I have of an immune system was able to fight in the background, but now that I am uber immunosuppressed, my body was like “yeah right, have at it”. I went to this really awesome doctor at St. Luke’s and he asked a TON of questions and then looked at me and said “I’m pretty sure this is not infectious. But because you do have a couple of “flags”, I am going to do some basic tests/cultures. If they turn up negative, we’re not putting you through the meat grinder”. So I was chest-xrayed and had about half of the blood in my body drained (yes, that’s an exaggeration, but it was a LOT of vials!). And everything was negative. Yay, I am not infectious. :)

Meanwhile, my symptoms keep worsening. Major issues with fever and swollen joints (as in hip and SI joints so inflamed that I have trouble walking in the evening). And I hurt. All the time. My wrists, fingers, ankles, toes, hips, and shoulders are the worse, and even the connective tissue between my ribs and my jaw is not happy. I was pretty miserable in the evenings during this past weekend in AZ, so I called my Rheumo doc on Monday and he worked me in yesterday.

We started the paperwork to send me to the Mayo Clinic in Rochester, MN (they specialize in rheumo-stuff). We had talked about doing this at my last appointment if the ID doc couldn’t find something. And he also mentioned some awesome rheumo docs at the UT rheumo clinic (in Houston)– so I’ve got an appointment in May with them, and hopefully they can work me in sooner. And then we talked other medication options.

In hopes of tiding me over until I can get a second opinion at UT or Mayo, we’ve drastically increased the dosages on both my immuno-suppressive drugs. So if I was uber immuno-suppressed before, call me uberificially immunosuppressed now. We’re also looking at using some biological medications that will kill my B cells – B cells produce antibodies and my antibodies attack me. Autoimmune diseases can be caused by overactive/dysfunctional B cell production (B cells come from white cell lymphocytes ). He’s starting the process of getting me approved for one of them –it’s not a common med to treat Sjogren’s, but it has been done before for patients who are “not responding to aggressive therapy” (that would be me). It’s ridiculously expensive and difficult to get a hold of, so there is a lot of insurance hoopla to go through. Thankfully, there was no more talk of the scary new lupus drug he had mentioned earlier. I have done some additional research and refuse to go on it, but looks like it’s off the table. Thankful about that!

So there we go – future consultations at the UT Autoimmune and Rheumatology Clinic and the Mayo Clinic in work. Uberificially immuno-suppressed. And my antibodies don't like me :).

So thankful that my rheumo doc doesn’t have ego issues about me getting a second opinion – not that it would have stopped me, but it makes it less stressful. And I am thankful that even though I am hurting and am uncomfortable, God gives me the grace to still get work done and spend time with friends and family.

"Fantastic Voyage?" Sorta...

The post title is a throwback to the 1966 movie "Fantastic Voyage" - where a special submarine and medical crew are miniaturized and injected into this guy's body to repair something...I've never seen it, only heard the references (yeah, it was either "Fantastic Voyage" or "Invisible Enemy", which is an old Doctor Who episode, as the post title - I figured I'd have more bites on the F.V. :) ).

I almost posted pictures... but I think that would be crossing the line...I mean, who really wants to see the inside of my stomach?

On Friday I had an EGD (esphagogastroduodenoscopy) done - where they knock you out and stick a camera down your throat to look inside your stomach. On top of the flare I have been having, I've developed some intense stomach pain, so the investigation has commenced. Thankfully, the EGD was normal - I got to see cool pics (after the procedure of course. I was awesomely unconscious for it...) of my esophagus and stomach and stuff. Everything checks out clean...which is both relieving and frustrating because, where is the pain coming from? The gastro doc is having me get a CT this week to see if that will show anything. Huge praise is that I didn't react badly to the anesthesia as I have in the past - the plastic bowl/bag strategically placed in my friend Amanda's car for the ride home was NOT needed :). I think she might be more thankful than I am...

In the meantime, I'll admit I'm having a rough go of it, so prayers are appreciated. I appear to have picked up a sore throat/cough bug, so that in addition to the stomach pain, in addition to the fever/joint pain from the flare is just not much fun. So if you ask me how I am doing and get a subdued "eh"...well, I'm just being honest...I can only wear the "everything's hunky-dory peachy keen" mask for so long - it gets tiring and it's not honest. So working on the balance between being honest, but not complaining. I've been spending more time praying for others - I find that helps take my thoughts off of me and avoids that self-pity cycle that can be easy to get into.

I am HUGELY thankful that my stomach has starting growling again and my appetite seems to be picking up. Praise God! And that even though I don't feel well, I am still able to get things done at work and at home - a HUGE blessing. It definitely helps mentally and emotionally when you can still be productive. And God has been teaching me more and more about how His plans are different than mine, and better, even though I can't understand exactly why things have to happen they way they do. And that He will sustain me. I am learning more about not stewing on the "why is/isn't this happening?" and more on just resting on "I AM" and the fact that "I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God who loved me and gave himself for me" (Galatians 2:20).

Whew, but SO ready for this particular trial to be over. And that's being honest :)

180 degrees

I had a 180 degree moment this week.

Background (potentially background overkill...)

I am still flaring and this past weekend, started having some intense stomach pain, so I headed to my regular doctor on Tuesday. I'm on the low dose of steroids, which can cause ulcers, so I thought maybe that was the problem, even though I have been on oral steroids a TON in the past and never had any problems. She agreed the pain was definitely my stomach (versus connective tissue, because I have had problems with connective tissue inflammation in the area that the pain was in) and expressed concern about the pain combined with the weight loss I have had, so she said I need to get an endoscopy of my stomach done. So I have a consultation with a gastroenterologist next week to get that scheduled. She prescribed an acid reflux med and an appetite stimulant. But, I am SO tired of swallowing medicines, that I've decided to hold off on the appetite stimulant and see if acupuncture can help. Yup, I am back under the needles. I had 30 (!!!) in me on Thursday. The last time I was flaring, the needles helped break the cyclic fevers I get when I flare, which helps SO much in making me feel better ('cause really, you just feel so BLAH when you have a fever). I had needles in my stomach too, and those HURT going in, so that's an acupuncture-y sign that something is going on. And my stomach started growling again when she put them in...so hopefully a good sign of things to come. I see the acupuncturist next week as well, so I am hoping to get the same fever-eradicating results as last time :). Oh and my rheumatologist decided to double my dose of one of my immunosupressive meds. So needless to say, I was mentally, emotionally, and spiritually maxed out on doctors, pills, and the "House- esque"-ness of my situation by mid-week.

End background overkill.

But the title of the blog comes into play this past Thursday, as I was sitting in my car in the drive thru pickup line at Walgreen's to get the acid reflux medicine. Originally, the prescription my doctor wrote wasn't covered well by my insurance and I wasn't going to spend that much money on something that may or may not fix the problem. So, this was actually round two at Walgreens for this med. The pharmacist told me the total and it was even more than the first prescription and that it was so expensive because I had reached the limits on my insurance. That made me pause. 1) I have really good insurance, so that just sounded weird and 2) fleeting panic on what would happen if my insurance REALLY was maxed out. And then my brain kicked in and I started asking a series of questions about my prescriptions on file, had them rerun some insurance stuff, and finally requested that they remove the first acid reflux med request from my file and voila! the new med cleared (cost me $5, yay insurance!). As I was driving away, I found myself thinking "wow, that's just great, cluttering up my brain with all sorts of prescription/insurance-y info, wish I didn't know this stuff"...and God just turned my thoughts and my attitude 180 degrees. I became THANKFUL that I knew what questions to ask and what suggestions to make - it probably saved me about an hour on the phone with the insurance company the next day trying to figure out what the problem was.

I am so thankful that God is faithful to continue to do the work He is doing in my life even when I am not open to His teaching. Reminding me that He is Sovereign. Increasing my dependency on Him. Reminding me that He is all I need.

"And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ" - Philippians 1:6

Back to square one?

It might just be back to square one. With respect to treating my disease that is.

I started flaring again last week and just happened to have my standard every 3 month rheumatologist appointment scheduled for today, so the timing worked out well. I hate when I make my rheumatologist get a sad face- he just sits there and listens to me list off my physical complaints and his brow gets more furrowed and the corners of his mouth turn down more. Just not fun. I appreciate how dedicated he is to getting me feeling better and that he really listens to me.

As you loyal blog readers know, my disease has been really unstable the past two years. I’ve been flaring more than I have been in remission. My doctor and I finally said the words I was loathe to hear at today’s appointment -“the meds aren’t working, we need to try something new."

A new drug was just approved last March for the treatment of Lupus - which I don’t officially have, although I have a ton of symptoms of it. That’s the tricky part about autoimmune diseases - there is so much overlap of symptoms that it can be very hard to figure out the exact name of your disease (for instance, for about 4 years, my diagnosis was Mixed Connective Tissue Disease - then I presented much more solid symptoms of Sjogren’s and Raynaud’s - so it changed to that - but lately I have been presenting lupus and other autouimmune disease symptoms - so it’s a constantly changing beast). This new drug sounds really scary. I should be used to scary drugs, considering the cocktail I take now, so for me to say it sounds scary, well, you get what I mean.

If we did decide to go with this new drug, I wouldn’t start until the summer because of the trips I have scheduled. I am willing to wait until after the trips because I am not horribly uncomfortable or incapacitated. And I really want to go on these trips. The side effects of the medication and how it has to be administered (via IV) would prevent me from traveling to remote locations until we see how my body reacts to it. And I get the feeling that my doctor wants to mull it over a bit longer too, so we aren't rushing into anything at this time. They took a TON of blood today and we are still trying to figure out why a year and a half ago my body stopped responding to the steroidal treatments that we were using to stop the flares. I’m thankful for the time to think this over and also look at other options and possibly get a second opinion, as much as I trust my current doc.

So for now, I maintain the usual medicine cocktail and we added a low dose of prednisone (steroids) to help as an appetite stimulant (since we're pretty sure the steroids won't do anything with the inflammation due to my apparent immunity) - let's just say I've lost a decent amount of weight over the past few months and I don't want to end up looking like Skeletor :eww:

So here's to this flare being short lived. And I would greatly appreciate prayers for wisdom for me and my doctor on what to do next. Also, can I just say how thankful I am to live in an age where we have these medicines to help keep us feeling well? Read in a Melissa voice: "I am thankful" :)

Gluten free - 1 year

Hard to believe, but it's true. I've been eating gluten free for an entire year.

Now remember, my definition of gluten free does not include sauces that might have vinegar, items with modified food starch, etc - I call these things "minor gluten" and don't try to avoid them. I do avoid major gluten items, like pastas, cookies, crackers, breads, etc that have regular wheat flour/gluten in them. I am thankful that I don't have to be strict gluten free like someone with Celiac would have to be.

Eating gluten free hasn't done what I hoped it would do - I wanted it to help with reducing inflammation in body in hopes that my flares would be less painful. Well, not only were my flares painful this year, but I had my longest one ever since being diagnosed. Disappointing, yes, but there still is a glimmer of gluten free hope.

I have solid evidence now that my G.I issues are gluten related. How do I know? In December, I started slowly reintroducing gluten. I ate a piece of zucchini bread. No problems. I waited a few days, ate another piece of bread. No problems. Then I went a bit crazy while putting a goodie plate together for some friends and ended up eating two pieces of zucchini bread and a piece of poppy seed bread. Oh, did I pay for that. Horrible stomach cramps and let's just call it other G.I. issues. Even days later, I wasn't processing food like I normally do. So, I stopped with the bread experiments. When I got to Arizona, I munched on these awesome non-gluten free crackers my mom makes. They are addicting. And I over did it. Thankfully, the reaction wasn't as violent, but my body definitely wasn't happy. So, the great thing about this discovery, is that I can cheat when it comes to gluten, as long as it is in small amounts. This means, I can have a cookie that someone brings into work... A cookie (not 3). I can have a small piece of cake to celebrate someone's birthday.

So, I plan on smartly implementing the cheating plan and maintaining my gluten free diet because of the benefits that I have seen. I am calling my gluten free experiment a success, despite not getting the desired results.