New Normal

Wow. It's been over a year since I've blogged. This isn't a catch-up post. The past year was a whole lot of figuring stuff out, physically, spiritually, mentally, emotionally. Ups and downs, a true roller coaster.

So here I am a year later. I think am fully into what I can call my "new normal." I use this phrase a lot when talking to folks dealing with grief and/or major life changes (I didn't invent the phrase). It's so helpful...with huge life changes, whether sad or happy, what you used to call "normal" for you doesn't apply any more and you don't want to say it, because it reminds of you of what isn't normal any more. "New normal" helps ease into the changes that have happened. For some reason, at least for me, it makes it more palatable. Most of the time.

A doctor used it on me yesterday and I wasn't happy to hear it. For MONTHS and MONTHS I've been getting bad headaches (different than my constant head pain) and more migraines than usual (I've gotten migraines since I was 8 but they had really settled down as I got older and now they are back much too frequently for my tastes). And I've been dealing with sinus stuff again. After a couple of rounds of antibiotics and steroids, I went to my ENT yesterday to see what we could do. After some great discussion and examination, she announced that what I was dealing with was an irritated trigeminal nerve...it's close to my sinuses and with all the inflammation, it's super mad and causing my headaches. Flash back to a year ago when I thought some CNS lupus was flaring and it ended up being another sinus nerve (can't remember it's name) that was irritated and make the back of my neck and head super angry.

I looked at the doc and said "I never used to have these issues. Does meningitis cause this?" Her answer, "Yes, and it can heal/reverse, it can take up to a year. Since yours was over two years ago, I'm afraid this is your new normal."

Thanks doc. So I get to keep popping a ton of ibuprofen every day for awhile until the nerves chill out. And the options for nerve chilling out meds are things I've already tried a couple of years ago and they make me feel groggy and stupid so I'm not going to try those again.

Meningitis stinks.

But, I have to say, I am so thankful for the new normal I'm living. My residual/remaining meningitis caused head pain and lupus serositis pain is well managed. I'm not taking heavy narcotics anymore. In fact, my med list is as short as it was before the meningitis-trigger-lupus-nightmare of 2016! Huge praise.  My disease is being managed pretty well, and I have energy right now, and I am totally taking advantage of that! And we've got some pretty exciting things stirring over here in the Flinchum household (more to come on that in a bit...).

But I have my moments when I look back and want the old normal back. I miss my health, I miss working at NASA. And yet, I love the opportunities I am having now. Back and forth, back and forth. I don't like being discontented. It's uncomfortable. I want to leave that feeling behind, that feeling that I'm missing out on something...I can totally be the Israelite who wanted to go back to Egypt after being led by God through the Red Sea.

I'm learning that when you want to put off something, you have to put on something else...just saying "bad feelings, be away with you!" and leaving it at that makes room for all sorts of other bad things to fill the gap...such as relying on my own strength and not the Lord's.

You see, in order for me to put off anything, I must put on something that is stronger, more true, more faithful than whatever it is I want to put off. And you guessed it, the most strong, true, and faithful source is God. So for me, putting off discontentment means putting on trust, trust in Him and His faithfulness that through EVERY thing, He is working, He is there.

What do you need to put off...and what will you put on?

A Little Post

So apparently getting spinal fluid sucked out of your spinal column is a bit unnerving to one's Central  Nervous System (pun intended). To rectify this, if you go to the ER, they will then shoot your own blood back into your spinal column to hopefully clot up the hole that was left from sucking out fluid, which is most likely the cause of said un-nerviness (read: massive head pain, nausea, dizziness, wooziness, can't-stop-sleepingness). It will be pretty much the most awesome ER visit ever because God paves the way with great techs, nurses, and a NP that calls all the right people and actually gets you to radiology for the blood patch (the technical term for "shooting blood into ones spinal column")..on a Sunday evening, which doesn't usually happen. And you get to sleep in your own bed that night rather than being admitted. Also, getting this blood will make your spine feel like it's been kicked by an entire hockey team and you'll hobble around the next day. And break a sweat trying to do your field vision test so you can start a new med but those green dots are SO hard to find when your brain is fuzzy and your eyes keep glazing over.

And you'll realize -as you're sweating all over the chin piece at the eye doctor (sorry person who's going after me)- that you really are not able to get on the plane that you're supposed to be getting on the day after your birthday to finally celebrate Christmas with your side of the family and see some of your awesome nieces and nephews. And even though you've prepped your friends and family (because well, lumbar puncture and ER visit...) that the trip might not happen, you still feel like you're disappointing them...even though they are the MOST encouraging support team and keep telling you that your health comes first.

So you ice pack your head after returning from the sweaty experience of eye tests and start thinking "okay, am I going to feel sorry for myself?" And you don't, but you do cry a bit because you're really hurting physically and you need to let that wave of pain wash over and settle. And it does, because it always does and returns to more tolerable levels and then you can more level-headedly assess your heart. And your heart wants to see familiar faces and hug loved ones necks and "good-golly am I ever going to get back out to Arizona!?" frustration brushes a bit.

And you breathe. And you know what? - that quiet still voice is there, in the fading of the pain tide, in the plans cracking and reassembling into something you don't know yet. Stillness. Deep-rootedness. Him. My God.

I can give my plans to him and trust Him to work out the best option. I already saw the fruit from canceling that first trip. There will be fruit with this schedule change too. Good fruit. Because He's growing it.

And with that, my head is Lifted, just as His word says. He lifts my head (Psalm 3:3). Even my banged up, pressurized, sometimes-a-new-head-sounds-like-a-great-plan, head. He's leading me. He's leading Jim. He's leading us. And on the cusp of a new year, when the fact that my plans changed again and without my consent, I feel I could easily tip into lamenting, which would be understood and isn't a bad thing, it's okay to be sad and to mourn...but this time, I can feel the urge to focus on what He's been showing me over the past month.

Grow.

Grow what you've been given.

I've picked three areas to grow in this year new year and well, since my birthday falls near the beginning of the year, it works out well to combine all that "new year goal" stuff together:

Grow in my writing.
Grow in encouraging others.
Grow in discipline.

So, Lord, I want to use this unexpected plan change to grow in You. To show You to others. To love others. And I'm writing this and leaving this as an encouragement to myself in case I need to read it on Wednesday when I am supposed to be boarding that plane that won't be boarded now. Because I want to remember the stillness, the peace. That this is okay and my head is lifted.

Given: Approaching goal-setting when you're chronically ill

Ah, the New Year. And with it, all the talk/posts/encouragement about setting attainable goals, making this year your best yet, challenging yourself to grow, etc, etc.

For several years I stopped setting goals because I kept getting disappointed. Lupus and my other illness kept "interrupting" my goals. Life does that sometimes, right? But then, I realized that not making any goals was pretty negative and un-motivating. I set some goals for 2016 and 2017 and while I was able to accomplish a few, the ones that really mattered to me weren't accomplishable because of my health or things outside of my control. I have to be careful with goals because I am such a type A personality, I can easily slip into measuring my worth by accomplishments and productivity. My life right now looks very very different from what it used to (not all in a bad way!) so I am learning how to reset my definition of productivity and what it looks like in my current season.

I realized I was started to cringe when I thought of goal setting and so I started walking through an excellent goal-setting blog series by Lara Casey to see if it might change my perspective on goal setting. I love what she says:

"Cultivated goals help you grow what you've been given"

You guys. I KEEP comparing what I used to be able to do to what I can do now. "Comparison is the thief of joy" ~ Theodore Roosevelt. My goals aren't realistic to my current capability or things I've been gifted with...I am focusing on either what I used to be or what I want to come about and completely missing the here and now, completely missing what I have been given now to work with. My goal setting hasn't been motivating me or growing me - it's been breeding discontentment.

As I read through the first 3 parts of the series, I kinda got hung up on something - as much as I love the grace-filled and intentional words and process she's recommending for setting goals...things look really different when you're chronically ill...and it's left me feeling like there's something missing in this whole goal setting thing...

How do you set and achieve goals when you're chronically ill?

With chronic illness, every day can be different and huge changes can all of a sudden trumpet their way into your normal schedule, making it feel like the rug has been pulled out from under you. As you adjust, you start taking stock of where you are and what you can do and it can be easy to list the "can't anymore" instead of "can still" or even better "this is a new can/opportunity."  So how does one wisely set goals and dream dreams but also hold onto them loosely, be flexible, and willing to accept changes one can't control?

:picture my face frowning and thinking:

Spoiler - I don't have an answer, but I am going to share some thoughts that I am ruminating on and would love to hear others opinions and perspectives on this one!

The struggle:  I write down things like "exercise 3 times a week" but my reality has to reword that to "as much as I am able, be physically stronger by the end of the year" or "be as active as you can every day" and the vagueness bothers me. Again, type A and an engineer to boot - I like exactness and specificity. I wrote down "spend 1 hour every day studying for counseling certificate" and I struggle to add 17 caveats about "it's okay if your brain fizzes out 15 minutes in" or "it's okay if you have an entire week where you just have to rest and even reading is a chore".

In a world that demands exacts and black and whites and firm and strong statements, I struggle to not follow the world's status quo and believe that it's actually acceptable to be weak at times, to be vulnerable, to fail and be okay with just failing and not having to try again, but to always move on, move forward, rather than beating myself up. To celebrate and rejoice in the attempt.

Grace.

Merriam Webster defines grace as "mercy, pardon, a temporary reprieve" and in Christian beliefs, "unmerited divine favor."

It comes down to giving grace to myself. Because God has given me grace. It means allowing myself not to be perfect (gasp!) because He doesn't expect me to be perfect. I am a work in progress, He is perfecting me.

Grace isn't an excuse to just sit like a lump and wait for things to change or to not try - there are many, MANY references in Scripture with active commands to do, practice, live, love - those aren't passive make-excuses passages - they are a call to arms! But they are a call to arms within the grace of God and within His love for me.

My friend Rachel recently posted a realization (that got me thinking, thanks Rachel!) she had about resolutions and how they can be like following the Ten Commandments - some are easy to follow and some seem impossible at times (hello - don't covet (want) what your neighbor has...but those boots are SO cute, why can't I have them too?)...in Matthew, a group of priests asks Jesus "which of these commandments is the most important?" and Jesus says "you shall love the Lord your God with all your heart and with all your soul and with all your mind. This is the great and first commandment. And a second is like it "you shall love your neighbor as yourself"" (Matthew 22:36-39) - Loving God and others first allows us to follow those Ten Commandments.

• Loving God and others first will align my heart to His, to align my goals and dreams to His, to allow me grace when I struggle to be flexible with changes that come my way. 
• Loving God and others first will point me to the here and now and what I have been given so that I can cultivate goals with what I have been given and grow where I am planted and work within the space He has given me, rather than wishing for another space. It's not wrong to hope and dream, we need to, He made us that way. But our hopes and dreams must, for the one who believes in God, be rooted in Him. Trusting in His plan.
• Loving God and others first will allow me to choose joy, putting Him before me.

Y'all, I am still processing and thinking on this, so I apologize for the lack of resolution (pun intended). 

My take-away so far:
Goals are good and needed to make forward progress in anything. Goals are hard to make when you are chronically ill but illness shouldn't keep me from growth. As my bestie pointed out, I have to be creative with my goals. I have to give myself grace to not meet what society says I should look like, and rather strive to meet what God says I should look like and be like. If I focus on what God wants me to do and be and what He has given me, then contentment and hope should flow from that focus.

So, what I have been given? What have you been given? How does that change or not change the goals that you've put together for this year?

I will put in the effort that He enables me to and "...if the Lord wills, we will live and do this or that" (James 4:15).

Tambourine

We were supposed to be in Arizona today. To spend Christmas with my side of the family and hang out with sweet friends.

But we've had to postpone because my head pain and neurological symptoms from a suspected return of the lupus attacking my central nervous system (CNS) have gotten worse, not better, since they first started up again at the beginning of December. We decided it would be wise to stay close to the doctors and facilities familiar with my case.

I am bummed. I've cried and had a couple of pity parties for myself. I thought we were past this. I am tired of dealing with it. Why can't we move on?

But something surprising has been happening in my heart, a huge difference from the past few months and I feel that despite my heart hurting with the change of our plans, I'm bursting at the seams to share this difference.  I have this hope that I can't shake, not that I want to, but not even when I want to entertain my bummed-outness and disappointment does my heart get too heavy. It hasn't been too much to deal with...how can that be?

My sweet husband has something to do with that - he's so good at rolling with the punches. But even he can't be positive all the time.

It's God.

Our hope is being sustained by the Lord and I have to tell you, it's pretty amazing.

Since my last post on my struggle over the past few months for hope, I have seen God work in amazing ways, through sermons (Psalm 23 and Exodus 15:1-21), a book called Daring to Hope, and by sweet friends who suffer greatly sharing their hearts and their struggles. All with the same theme - our hope is in Him, not in our circumstances. I can be so thickheaded and stubborn, and He seems to be pulling out all the stops to remind me of what I wrote to myself in that post.

Even if not, He is still good.

A friend of mine posted this wonderful blogpost that you should read in its entirety and my favorite part was this (bold my emphasis):

"However, I have found that if I can manage to lift my eyes off of my circumstances and onto Jesus, I  find the hope I am looking for. I remember friends and family telling me last year "It'll get better" and guess what, it did! It's important to note that my circumstances didn't change at all. In fact all my worst fears of where life could go happened anyway. There has yet to be resolution to my story and in fact I am walking straight into another difficult season as I write this. So often we try to push past the suffering and pray to get to the other side as quickly as possible, when in reality God wants us to lean into him and use this pain as a way to realize how sufficient he truly is. I am learning this daily. So on those days, where it feels like you won't make it through whatever it is you're going through, remember you will not perish because God is faithful always. He is faithful no matter what, in both the triumph and the tragedy. Christmas is the perfect time to call this to mind, as we are literally celebrating the fact that God loves us so much he became flesh and dwelt among us. "

My circumstances haven't changed - I am still battling raging head pain daily, intermittent loss of hearing in my right ear, awaiting the results of MRI scans to see if there's inflammation in my brain. In fact, it seems in some ways my circumstances have changed for the worse.

But He is still good.

Exodus 15:1-21 is the song that the Israelites sing after the Lord brings them through the Red Sea. They remember what the Lord has done, they rehearse who the Lord is to them, who He has been and will be...and their response? 

"Then Miriam the prophetess, the sister of Aaron, took a tambourine in her hand, and all the women went out after her with tambourines and dancing. And Miriam sang to them 'Sing to the Lord, for he has triumphed gloriously; the horse and his rider he has thrown into the sea." (Ex 15:20-21).

He has triumphed gloriously.

This whole Christmas season is about waiting - waiting for the glory of the Lord that completes at Easter. This is the start, the coming of Emmanuel, God with Us. And we know the end, we know He triumphs. We know He has victory. 

Our days don't go as we planned more often than not - the kids wake up on the wrong side of the bed, you lose a loved one near the holidays that seems to taint the season forever with sadness and pain, you have a hospital bag packed, ready to go in case the pain gets too bad, dreading the thought of spending Christmas in the hospital. But He has overcome the world.

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." (John 16:33).

When things change or go a different way than we'd prefer, when it seems dark and the worry and fear are relentless, let us rehearse who He is, let us grab our tambourine and shout praises to Him for what He has done and what He will do - because He is faithful!

"When we cannot find joy in our circumstances, we can find joy in God, who is unchanged and unchanging" - Katie Davis Majors "Daring to Hope"

In this season of celebrating the birth of Christ, may I, may you, be like Mary and sing, despite the unknown and incomprehensible circumstances:

"My soul magnifies the Lord, and my spirit rejoices in God my savior...for He who is mighty has done great things for me, and holy is His name." (Luke 1:46-49)

Merry Christmas!

Walls

I've been quiet on this here blog because the past few months have been really hard for me. I felt like I was getting better and then, whammo!, massive stomach and digestive issues that left me vomiting, crying in pain, unable to eat, the whole kit and caboodle. And I didn't know how to handle the change. I thought I had waited and hoped patiently over the past year for healing. The improvement I was making was so painfully slow, but at least it was there. But now this? What seems to be the resurfacing of my stomach issues (attack of the lupus!) from five years ago, but this time with more firepower? Um no.

So I built some walls. I built walls around my heart to protect it from disappointed hopes. I stopped reading my Bible and stopped journaling because my feelings were hurt, by God, and I was mad. I avoided probing questions from sweet friends about how I was doing. I put on a brave face.I felt like a fake - I mean, I write about all the things God teaches me and I love reading and studying my Bible, and here I was, lacking the enthusiasm to even open the covers, let alone read the words on the page. I prayed though. I prayed for Him to help me, to soften me, because at least He was letting me see the hardness I was creating around my heart. And I did ask for prayer from a few friends, but to be honest, it was half-hearted and I didn't think anything was going to change.

About two weeks ago, my eye was caught by a blogpost called - "Dear Bible Study Dropout" and I chuckled cynically, thinking that was kind of like me, except I had pretty much dropped the Bible. I started reading it and the first Scripture reference was this:

"for God does gave us a spirit not of fear, but of power and love and self control" - 2 Tim 1:7

Tears started pouring. I mean, we're are talking an instant emotionally response to reading this verse. I shut my computer down and the first time in many days, I opened my bible to that verse and grabbed my journal.

FEAR. 

My old buddy fear. I think that's what triggered the heart-valanche. I started writing down all the things I fear now - I fear people judging me because I am different than I used to be. I fear making mistakes in front of people who are used to seeing me at my best. I fear being able to tackle the dreams Jim and I have dreamed because my health is just so bad right now...and that leads to what I think is one of my ultimate fears right now - what if I never get better? What if I am never well enough to do such and such or be such and such?

My fears and my walls have been preventing me from hoping. And when I mustered what I thought was "hope," it was focused on getting well.

That's a hope that can fail. 

What if I don't get well? What does "well" look like? I mean, I bet every person has a different definition of what "wellness" means to them, right?

It's nearing Christmas time, a time when Christians celebrate the coming of Christ, the one who would save the world. A lot of people back then hoped in His coming and His coming looked very very different than what people had in mind. They thought a powerful King was going to come in and save them - to right all the wrongs - to rule with kindness and wisdom and solve all the woes of the world. 

And He did - but it wasn't with flashy gold crowns and armadas of armies and putting all the evil into prison...it was by Him dying on a cross.

What the what? How could anything be the more opposite of what people back then were hoping for?

His dying on the cross did EVERYTHING for us. That's a phrase I see a lot in social media these days "that couch is EVERYTHING" or "this new design is EVERYTHING" - I get the intent, but, 

The only one or thing who is everything is Jesus. 

I am like those people, who back in Jesus' day were staring Him in the face, looking right through Him, and still searching for their savior. Those people who were confronted with all the Old Testament prophecies coming true and yet, because of their expectations of grandeur, couldn't see the King the lowly carpenter born in a stable.

So this hope I have in getting well, how I am looking at it like those people? How am I missing the hope He is giving me because I want to see something else? Do my expectations match with His and if they don't, how do I change that?

The old hymn states "my hope is built on nothing less than Jesus Christ, my righteousness."

What does it mean to put my hope in Him? It means that I bring nothing to the table, any strength or bravery or faith I have is what has been given to me by Him. My own efforts and determination, it is all tainted with my sin, my selfish thoughts and sharp words and judgements thought or uttered (Isaiah 64:6). Jesus Christ's death covered my sin and because I believe in Him and have faith that He did that for me, because He loved me so much (John 3:16, Ephesians 2:4-7) He didn't want me to be eternally separated from Him (Romans 6:22-23), I have hope of a future (Philippians 1:6), I have hope that I have His Holy Spirit in me that will give me power, and love, and self-control (2 Tim 1:6-7), I have hope that He will give me wisdom if I ask (James 1:5), I have hope that my sins, all that I have committed and will commit, are forgiven (Romans 5:10, Romans 8:3, ), I have hope that when my troubles are too much for me to bear, the Holy Spirit will pray for me when I can't find words to express my hurting heart and physical pain (Romans 8:26-27), and I have hope that yes indeed, one day I will be healed, that my body will be perfect and there will be no more tears (Romans 8:18, Rev 21:4).

There are so may more hopes (otherwise known as the promises of God). 

Those are hopes that will not fail, that can not fail. Isn't that the best definition of hope!?

I will definitely continue to pray for healing, and for my dear friends who suffer and cry out for healing as well, because He is good to grant us things' according to His will and timing. But if my healing on this Earth isn't part of His plan, my hope of it is not unmet - I know HE WILL.

Because He said He would.

His oath, His covenant, His blood,

Support me in the whelming flood;

When all around my soul gives way,

He then is all my hope and stay

On Christ the solid rock I stand, all other ground is sinking sand.

Tufts! - a medical update

Many have asked how I am doing with the meningitis recovery and the lupus stuff, so here's a medical update for ya!

Many of you saw my pics a bit ago on social media. The below is the latest - they are outta control! :-).

As my post said, I lost a lot of hair during the Cytoxan treatment I went through to stop my lupus from attacking my central nervous system (CNS). It took awhile for it to start growing back, but it's coming in now, curly! I had my last chemo treatment in February. Shortly after, I started on another,  much less harsh, treatment called Rituxan - it's administered every 4 months via two IV infusions about a week apart. I also started on Imuran (I take this daily). Both of these meds are chemo meds, but I get them at much lower doses. They suppress my immune system to keep it from attacking me. And I've been responding really well to the combo - my joint pain and fatigue have improved SO much!

The meningitis recovery is taking SO much longer than anyone anticipated. Again we *think* it was triggered or aggravated by my lupus, so the recovery has been much different than just a regular recovery from a viral/aseptic meningitis (and I know this because I actually had viral meningitis when I was 16!). My head and neck pain are MUCH improved and my pain management doc and I are working to reduce the heavy meds I am on and it's been going okay (my body doesn't handle changes well, changes flare up my lupus so we're having to balance things).

My mental focus and capability are continuing to return. I still struggle with holding multiple pieces of info in my head and putting them together. Like doing mental math. Or making sense of someone telling me a plan or instructions. I often have folks say "oh, well I have trouble with that too" and the difference is, I didn't use to...I was trained to be able to look at lots of data and pull together a story (and backups to that story :-) ), so it's been an adjustment to feel like my brain isn't working right. I also have what we call "brain stutters" - it's when I know what I want to say, but I can't get it to come out, or come out correctly (sometimes I'll just blurt out words that have NOTHING to do with the situation). This has gotten SO much better and usually only happens now when I'm tired or upset or have a lot of inputs coming in (restaurants that are too loud or busy, multiple conversations going on around me, etc). My head will get tired/start hurting after watching a movie that's "busy" or after reading for too long, so I've learned to work with those limits. I've been playing a game on my phone that deals with patterns and strategy and I've found it's helped a ton when it comes to looking for things on shelves, scanning traffic, etc. I used to get so tired and confused trying to find things on the shelves of grocery stores, or even just trying to find lost keys in the house. That fatigue doesn't happen very often anymore...yay! And I've improved enough to where I was able to help my church with logistics and organizing help during Harvey. There is no way I could have done that 2 months ago. Progress people.

Physically, I am starting to both look and feel more myself. I actually gained 44 pounds from the steroids and I'll just say it was a painful struggle to process how much my body changed. As I've come off meds (specifically the steroids), my heart rate (which was 123 RESTING) has totally returned to normal, so physical activity isn't as frustrating (that moment when you want to exercise but after 5 minutes your heart rate is almost 200...). I started swimming again back in April and it's been slow, but I've been able to lose 20lbs (throughout all of this, I've maintained my clean-eating, gluten-free/dairy free diet, so really not many changes in eating habits, just getting off the meds and getting back to exercise). It's been SO nice to be able to do some camping trips and travel and be able to handle it. I look forward to when I am not just "handling it" but just doing it, you know? Just another PSA- but don't take your health for granted. Use what you've been given and enjoy it and be thankful.

SO MUCH PROGRESS!!!

If you would have told me a year ago, I'd still be working to recover and stabilize, well, I would have cried. I think when faced with scary things, it's so important to take things one day at a time. I can tell you my biggest doubt and fear moments come when I get ahead of God. His mercies are new every morning, the bible says that (Lamentations 3:22-23)...that means, take it one day at a time. He knows us and how we will freak out if we try and figure out the whole path ahead. We can't see what progress we will make, what healing will happen, but He does. So rather than try and think and ponder and imagine, I continually work to let Him be God, not me, and instead focus on doing what He wants me to do each day - seek to love and honor Him in all that I do.

So the forward medical plan for me is to continue on the Rituxan and Imuran. And continue to reduce the meds I started after the meningitis (and we're close!). The only way to check to see if the lupus is still impacting my CNS is to do spinal taps (lumbar puncture - they take out some cerebrospinal fluid to check it), and they don't just randomly check your CSF (Thank GOD!), so my doc says we just watch for symptoms. I'm hoping the lupus just leaves my brain alone now and so far, there are no other indications.

As with all auto-immune diseases, the goal is stabilizing the disease so that you go into remission. Each slight improvement increases quality of life and therefore, every step forward is good, appreciated, and not taken for granted!

There you go - medical update. It's a lot of GOOD, isn't it? You'll notice that I didn't touch on the emotional/spiritual aspects of progress because that's a whole lot messier and part of the other blog posts that are coming that I mentioned awhile ago. :-)

Thank you all for continuing to stick with us and pray for us and encourage us. And it's definitely "us" - Jim has been the most supportive, gracious, patient, and loving husband through all of this and it has NOT been easy on him either. It's been really neat to see how God has grown him as a caregiver, in empathy and compassion,  and I've relied on his "at the end of the day, our goal is to look more like Jesus, that's it" statement so many times to help me not worry about the future and take things one day at a time. Jim truly is my best friend.

Courage, dear heart!

Print by Ruth Chou Simons of Gracelaced

Have you ever had an identity crisis? I did, years ago when inflammation around my spine took me out of running and triathlon. It took awhile, but God showed me that I am not defined by what I do, how much I do, but by the fact that I belong to Him, I am His daughter.

I've been having to remind myself of that a lot recently. I find myself not recognizing me. I am afraid to try new things. I am afraid to attempt things I used to do but haven't done in awhile. I feel a sense of relief when I return home after an outing; home is my safe place. You see, I know how I will react and respond (for the most part) when I am at home. I know how much noise and chatter I can handle. I know how much outside stimuli (book, movie, music) I can handle. Remove me from the house and it becomes a big unknown to me. Will my head start hurting too much? What if I get confused talking to the cashier? What if my now almost constant nausea makes me throw up in a friend's car? What if I just start crying in the middle of talking to someone? 

And this fear, it's silly, because, when I finally do these things I fear, I can usually do them, maybe not to where I used to be, but I can do them (like swimming backstroke after months of not using the muscles in my upper back because the steroid swelling was so bad). I am continuing to make progress. The immunospressive cocktail of Rituxan and  Imuran is helping my joints to be less painful and I've starting to work with my rheumo doc and pain management doc to wean of certain medications - and that's been going well. My focus and mental endurance is also continue to slowly increase. So my fear isn't even valid for the most part. But its still there and still real, which means it needs to be confronted.

Being fearful isn't a new thing to me. God and I have addressed that before and I am so thankful for being able to go back and read my journals and my blogs to remind myself of the truths He taught me.

"When I am afraid, I put my trust in you, in God, whose name I praise, in God I trust; I shall not be afraid, what can flesh do to me?" (Psalm 56:3-4)

"He keeps Him in perfect peace, whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock." (Isaiah 26:3-4) 

I am finding that as I am trying to teach myself not to be fearful, I can't just leave the space fear used to occupy empty, I need to fill it with something. I need to fill that space with the opposite of fear: courage.

What's courage? Merriam-webster defines it as "mental or moral strength to venture, persevere and to withstand danger, fear, or difficulty.

Well, I've tried the mental pep talks, they help, but it's not lasting, because it's me talking to me. I need Him to talk to me. And then I need to speak His word to me, not my words, those are fleeting and shallow. His word is living and active. My courage needs to be based in how He equips and sustains me to tackle the new, the untried, or the old familiar, not in my ability, capability, determination, or attitude (don't get me wrong, those help for sure, but they aren't the end all be all). Courage is a matter of the heart. And I need to ask myself, who has my heart? 

Our hearts can be many things - our loved ones, our positions and titles at work, our experiences, the outdoors, techy devices, knowledge, food, coffee ;-). None of those are bad, but as I get used to this new Melissa, the one who is more cautious than before, the one who can be tentative rather than decisive, the one who second guesses instead of forging ahead with confidence, I am realizing again how much I define myself by what I do, what I accomplish. 

My last day at NASA was this past Friday. It was the right decision, but hard because of how much I loved working there - the people, the mission, the cool factor :-). I left a position that I knew (usually) how to handle, what to do and how to get things done.

And the future yawns blankly and dimly before me. 

I've left something I know and can do well at, to stare overwhelmed and, to be honest, fearfully into the possibilities of biblical counseling and motherhood through foster/adoption. What if I can't do those things? What if I fail? What if my brain and my lupus cause all sorts of hiccups and mountains and stumbles? And I find I step fearfully back, dragging my feet, pausing overlong, questioning. This type-A, recovering perfectionist doesn't have a to-do list or a game plan. And the fear of the unknown, of failing, or regret begins to work its way into my heart.

How do I become courageous?

Courage comes from reminding myself of what He has done for me, of His faithfulness through the years. Of recalling to mind all the times He's blown my expectations, hopes, and dreams out of the water by showing up bigger and better than I could have ever imagined.

And this God? This God isn't a one-time God. He shows up EVERY SINGLE TIME. He's consistent, He's faithful.

Great is Thy faithfulness!

"The Lord is my shepherd, I shall not want" (Psalm 23)

"Be strong, and let your heart take courage, all you who hope in the Lord" (Psalm 31)

"He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. So we are always of good courage..." (2 Corinthians 5:5-7).

Courage is hope in a way - courage buffers the heart to press on and look forward, to hope, because of the past faithfulness of the Lord. 

If fear of the unknown, the seemingly impossible, the new, or the unwelcome old is causing you to tremble, to delay - join me in taking courage! Let us remember how He has been faithful. The Lord is with us and He equips us for all that He gives us to walk through and handle, whether it be health trials, financial struggles, struggling relationships, the unknown, the "might-have-beens". He knows.

“But no one except Lucy knew that as it circled the mast it had whispered to her, "Courage, dear heart," and the voice, she felt sure, was Aslan's, and with the voice a delicious smell breathed in her face.” (C.S. Lewis, The Voyage of the Dawn Treader)

Stripes

Check out my new walking shoes!

The Maizie-dog and I walk about 1.5 miles almost every morning. We tried 2 miles one day and my joints and my head were all "nope." But, yay progress! Jim and I also went swimming the other night. I swam laps for about 20 minutes (lots of breaks!)- I did get dizzy but it passed pretty quickly. I am hoping to renew my membership soon and add swimming to my physical activity. Since I am now on a maintenance dose of steriods (have to be - the high doses of prednisone (steroid) caused my adrenal glands to shut down (adrenal glands produce cortisol, the natural steroid that all of us need). It's an expected effect of high dose, long term steroids. It can take a year or two for my adrenal glands to wake up again, so for now, low dose prednisone. But the low dose means I should be able to start shedding the extra pounds gained from the steroids. And that's going to be tough because it's a hard weight to lose and I can't get my heart rate too high before my head pain gets too intense. So, another way for me to practice patience and perseverance.

I finished my second round of the new immunosuppresive med (Rituxan, it's actually another chemo med but not as harsh as the one I needed the port for). My next round isn't until August. So far, I haven't noticed any improvement and we're actually have trouble getting some of my lupus symptoms stabilized. Extreme fatigue, finger/toe/hip joint inflammation/pain, face rash, and fevers. We've upped the dosage of one med and added a super strong anti-inflammatory med that used to work well for me. And then there's my head.

Ah, my head.

So there is definite progress. The pain has reached a tolerable steady state and peaks when I try to read or focus intensely on something (like painting or sewing or writing). I am able to read for about 20 minutes before the head pain is a bit much for me. My eyes get blurry too, so I just have to rest and both the pain and the eyesight get better, so that's good.

But

I broke a sweat trying to figure out how to hang some pictures on the wall today. Literally sweating and head pain galore. It's a gallery wall. And I can't figure out how to lay out the frames.

Humbling.

Oh the number of things I still take for granted, even after previous trials where I thought I learned not to take them for granted.

I've had a few days recently where I am oh so aware of how broken my body is. Chemo did a doozy on me (major hair loss, skin issues.) One night as I stood applying a "grow your hair back faster" spray and three different lotions to help with after effects of chemo and high dose prednisone, I just started crying. I am so broken. My body is so broken.

But

This second "but" is a "but God," you know, the best kind of "but." Easter Sunday I sat in the side room at church (the worship music is still too loud for my head) and I heard one of the men reading from Isaiah 53. I pulled it up on my Kindle (yay big text size!) and read along and did a "whoa, repeat that again" on verse 5.

"But He was pierced for our transgressions; He was crushed for our iniquities; upon Him was the chastisement that brought us peace, and with his wounds we are healed."

Healed. I am healed. I'm living in a "already, not yet" form of body. It's going to 100% healed someday because He's already done the work.

God loved me so much that He sent His son to die for me so that I can have eternal life...in a brand new, no blemishes, no swollen joints no rashy skin, or eye-blurring head pain, body.

This, His wounds, the stripes made by whips, this makes it worth it. It makes each day doable. Because the healing has already taken place. Both my heart and my sin, and my body.

So as I make baby steps in increasing my capability for house chores and exercise and fun outdoor things, as I discipline myself to set down the book and give my brain a rest, as I work with my team of docs to find the right cocktail of meds to get me on the right path to continue to regain my previous abilities and capabilities, I can handle the setbacks, the rough days or nights, the disappointed hopes, the not met yet goals, the challenges of hanging frames in a way that pleases the eye. I can handle them because He is able to the uttermost to help, heal, comfort, provide, and sustain me. And to day by day make me more like Him. And then when we see the improvement, the progress, the carefully arranged picture frames, we (and hopefully you) will see Him in all of those.

By His wounds, His stripes. I am healed. Oh, what a happy, happy day.

All the things.

You should know that a title of "All the things" indicates a long post. Because, well,  there are a lot of things. :-)

Over the past few weeks, the word "hope" has been popping up. It started a few weeks before what was supposed to be my last chemo treatment. My daily readings in the bible, blogs that I read. There was a common thread. And then my bestie sent me a shirt and a necklace with the theme of "hope." She felt that my last chemo treatment was the start of a new season, one with more hope in it. My in-laws visited this past weekend and my MIL gave me a list of bible verses she had collected on hope. Honestly, that word has been everywhere and I kept ducking my head because it made me uncomfortable.

Feeling uncomfortable, for me, usually means I am about to get a Holy Spirit slap to the back of the head. It came this morning in the shape of my sweet friend who  picked me up for another doctors appointment. She asked how I was doing.

Apparently that is now the cue for waterworks and blubbering.

I thought I was fine, but my morning Bible study and reaction to some pictures I saw via social media had shown me a struggle that I didn't want to have to dig into. Ah, the dramatic lead in to/drum roll ...I'm sad that my expectations of what life would be like married didn't pan out the way I thought they would.

Surprised? I shouldn't be, but I was.

And let me clear, this is not about Jim, who happens to be the MOST patient, caring, loving, drop-everything-to hug me/pray for me/give me a back rub, husband EVER. EVER. In ALL of time. Seriously.

We got our wedding pictures back the day before I went into the hospital last August and I have been struggling to go through them, to put the lists together for prints and books and such for our photographer. We look SO happy in our pictures. There's such a beautiful representation of our amazing family and friends, who in these past months have become so much more dear to me, captured in the pictures of the BEST DAY EVER.

I look at the pictures, and I mourn for what we lost. What I feel we lost, even though I know that it wasn't His plan for us.

The months long "honeymoon period" that some, not all, folks experiences, but we knew that we would. The dewy, wide-eyed, unicorns and kittens newlywed year. As I mourn, and as tears pour, I wonder as He makes things clearer,  "Was I putting my hope in being married?"  Marriage is an amazing creation from God and I am so thankful that He's chosen that road for me and Jim. But it's not the end all be all. Along those lines, being a college graduate and having that dream job isn't the end all be all either. Nor is parenthood, having X number of children, or :insert long awaited season of life/purchase/vacation/etc:

God. He's the end all be all.

"Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation" (Psalm 42:5)

I thought I knew that. In fact, I am pretty sure I stated something along those lines over many years of discussions with the wonderful ladies who keep me on my toes, to my friends, even to my husband. But oh my, I am now seeing that my hope has been built on what I considered "more" than Jesus. It was sneaky and subtle, I'm just now seeing it and ready to own up to it and tell Him "I am so sorry for thinking I needed more than You. You are all I need. My hope is built on nothing less than You, Lord."

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. (Romans 15:13)

It's not wrong to hope for things, seasons, etc. Not at all. But if our state of mind, our happiness, joy, sufficiency, is put in things or ideals, it will fail. Our hope can't be in the up and down state of the stock market, or the perfectly imperfect spouse. His word is clear - He is hope. Hope in Him.

"You are my hiding place and my shield; I hope in your word" (Psalm 119:114)

"I wait for the Lord, my soul waits, and in his word I hope" (Psalm 130:5)

I've started a new immuno-supression med. I had the first dose two weeks ago and the second, tomorrow. Then it will about 4 months until the next one. There's two parts to this recovery - physical and neurological. And we are sorting out how one is or isn't impacting the other. My body, not trying to be dramatic here, is broken. It's really ticked off at all the meds and foods and oils and pokes and prods it's experienced in the last eight months. I've got bumps and scars and bruises and pounds from all of this and that takes time to heal. And as my body heals, we are seeing what of the physical is or isn't impacting the neurological. I can carry on conversations longer than I used to. I don't "blank out" as often as I used. I unfortunately still take heavy duty pain meds every day and every four hours (although I've pushed it to 5! Um, not good. ;-) ). We're learning and adapting to progress as it comes, and celebrating when we recognize it.

"But I will hope continually and will praise you yet more and more". (Psalm 71:14)

The in-between times of this journey have been sweetly filled with being able to take a couple of road trips, pick strawberries and make sorbet, attend an art festival and pretty much inhale the long coveted food truck kimchi french fries (soooo good!), and enjoy visits with family members and friends who love on us so well. Longer deeper conversations, less "feeling lost" when out in public, less recipe mess-ups ;-). We are so thankful for this progress!  But my hope can't be in my progress either. Because with each of those things comes a ton of planning and effort - schedule sightseeing around naps and pain meds. A good set of conversation will be followed by increased pain and a need for quiet for several hours. My spoons are being allocated differently and we're working to work with them, day by day. If our hope was in continual, methodical, increasing progress, we'd be disappointed. Of course, we hope and pray for complete healing. We should. God wants us to. But, my hope isn't in the end result of Melissa's Medical Drama 2016/17.

My hope is (and has to be) in Him. 

He sustains me each day. He provides and supports and comforts and refines and heals. According to His big, ginormous plan that I can't even being to envision, and one day, oh one day that I am so excited about, I'll be healed and with Him and with a body that isn't broken. No more brokenness. Can you imagine?

So we seek to find a balance between being hopeful and asking for miracles and being wowed at what He accomplishes for us here and now - through marriage and births and friendships and jobs and sweet memories built and knowing that HERE isn't our home, for those who believe in Christ as their savior. Home is heaven.

"Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." (Romans 5:3-5).

My Hope is Built (Edward Mote 1834)

My hope is built on nothing less than Jesus' blood and righteousness;

I dare not trust the sweetest frame, but wholly lean on Jesus' name.

On Christ, the solid rock, I stand;

all other ground is sinking sand,

When darkness veils his lovely face, I rest on his unchanging grace;

in every high and stormy gale, my anchor holds within the veil

His oath, his covenant, his blood support me in the whelming flood;
when all around my soul gives way, he then is all my hope and stay.

When he shall come with trumpet sound, O may I then in him be found,
dressed in his righteousness alone, faultless to stand before the throne

No Exchanges or Returns

Oh how I prayed there would be something to update you all with. And there is, it's just not what I anticipated. His answers sometimes differ from the ones we expect, from the ones we pray for :-).

Round 5 of chemo for my lupus is complete and we're two weeks away from the 6th, and expected final, round. Since we upped the dose, pretty much the whole week after is rough from a fatigue perspective. As long as I stay on top of my nausea meds, it's not too bad. But the fatigue and over sick feeling - wowee. I sleep pretty much all day for the first couple of days after, and then my naps gradually get shorter. And at about a week out from the dose, I feel like I usually do.

Complications this round included my insurance company balking for the first time since the new year (it's a praise that they haven't questioned the chemo treatments). Unfortunately, it's over my main pain med. I take an extended release form of it and then a regular release form of it for breakthrough pain. It's the extended release form that they are questioning (and I understand, this is a continuing treatment for me and they are seeing for the first time - I switched health insurance in January). So for the last two and a half weeks, I've been trying to time the regular release pain med to mimic an extended release plus handle break-through pain...it worked initially, but as the level of the meds wore off in my system, my pain levels have increased and stay at a pretty uncomfortable level most of the day. This means more days in bed and less days trying to have outings or visit with people, or do things around the house. So that's been dreary side of the past few weeks.

A huge praise is that I was able to get into a second opinion rheumatologist (still seeing the bigwig one in March) and she recommended a neurologist look into my case and gave me a name. I was able to get in to see him the day after I called! That NEVER happens. And, he is AWESOME. He spent time listening to the complicated history and reviewing the almost 2-inch thick folder (um, it's a Batman folder :-) ) of medical reports from each of the hospitals. I had another series of brain/spine MRIs that came back normal. The next step is for me to have another lumbar puncture (LP)  (also known as a spinal tap). This will be my 6th (!!!) since August. He needs to see what's going on in the fluid. Should be happening next week. 

I am now in a single digit dose of the steroids and should start to see (over the coming months) a loss of the water and steroid weight I've gained. I'm excited for that because I very much want to be comfortable in my own skin again. Chemo and steroids do quite the doozy on your body, although I'm thankful for the steroids because we are seeing that they have been helping with the head inflammation: my head keeps hurting worse the lower we go in the steroids..;so that's going to be an interesting discussion once I get to my steady state steroid dose.

That's my update - not much change painwise, except in what I consider the wrong direction. Some positive change in endurance and stamina (I was able to attend a friend's birthday party with a fairly large group of people in a busy restaurant - the ear plugs definitely helped!). What is every day normal for someone - grocery shopping, happy hour with the coworkers, trying to find a pair of jeans that fits, is a milestone for me and something we celebrate. It hurts to do these things, it requires detailed spoon balancing, but I am able (He enables me) to see past the pain and move forward, accepting the pain as part of the process, even though I don't like it. 

People comment that my faith is strong. I assure you, it's not. Instead, I offer to you that my God is strong. He is the one who enables me to get through each day, not just surviving, but most of the time with forward motion, with joy. Some days are survival days and that's okay. People comment that they couldn't imagine going through this, or handling what we are walking through. And they are right. They couldn't. Because they haven't been asked to walk what we're walking.

God gives us the grace we need for what He brings about in our lives - no more, no less. 

What's grace? Merriam Webster defines it as "unmerited divine assistance given to humans to promote growth (as in character growth) or the church-y word "sanctification, a special favor, an act or instance of kindness, courtesy, or clemency. I recently read something that pricked my heart. From "The Scars that Have Shaped Me," Vaneetha Rendall states that there is deliverance grace and sustaining grace. 

We (or at least me) pray for deliverance grace - to be healed, to be vindicated, to redeem that which is broken or unsettled - the wayward child, the broken relationship, for the tumor to shrink. We want it to be fixed and so we pray, just as He tells us to. 

And then there is sustaining grace - that energy to crawl out of bed and face another day of head and neck pain, or to face a grumpy teenager who won't talk to you, or a spouse who's giving the cold shoulder, or that boss that micromanages everything. It's the stiff upper lip/pull yourself up by your bootstraps gutsyness we're able to conjure when all we want to do is crumble, the deep breath we take when it feels that all the air has left the room, the ability to swallow one more med, get poked with one more needle, joke one more time with the nurse, or doctor, or receptionist. This is sustaining grace. He provides us so generously and abundantly the ability to LIVE: to walk in this world and process the hurt and pain, to move forward and encourage others in their hurting, to not be okay with our circumstances but still have the ability to love and laugh and choose joy. He is amazingly good to sustain us. To sustain me.

And I shun it. I put out my hand to return what I've been given and say, um, no. I want deliverance grace, I want this to go away. Let's see a miracle happen. Ready? GO! And He patiently responds with sustaining grace in the form of an email or text message of His Word, reminding me of His faithfulness, His goodness, His power. I stamp my foot and stick out my hand, greedy to thrust back this sustaining grace in return for deliverance grace. 

There are no exchanges or returns on His grace.

He gives the perfect amount, at the perfect time. Grace that, if we believe in Him, will bring us good and Him glory (Rom 8:28).

It's not that He doesn't answer, it's that His answer is different than what I expected, than what I prayed for. It doesn't mean that it's a poor offering from Him, that He's giving me the short end of the stick, the last dredges from the bowl. He is giving me His best - whether that be deliverance grace or sustaining grace. (Matt 7:11)

Oh Lord, for the heart and spirit to sing your praises even when the answer or direction of things doesn't match my expectations. To be able to see your sustaining grace as the immense blessing that it is. To again see that I don't walk this path alone, that you are there, sustaining me, giving me what I need each step of the way. May my definition of "good" match Your definition. May my heart accept the "Final Sale" of the grace, in whatever form, You give to me. And may I rejoice in that grace.

Out of Order

Where to begin?

I am about nine days out from round 4 of the chemo treatments I'm getting for my lupus and it's definitely been the roughest post-chemo so far. Lots of fatigue and that feeling of being sick (fancy medical word for it is "malaise.") I am having to rest and sleep more and my head pain is more present. My biggest complaint? I am retaining a TON of water - so much so that I went in to see my normal doctor to see if she could help. Because of the medications I am on, it's actually riskier (from a dehydration perspective) to put me on a water-retention reducing med (called a "diuretic) than to just let me keep getting poofy until we've completely tapered off the steroids. So I've been doing my own water shed regime of drinking dandelion tea and massive amounts of water. It helps a little bit, my eyes don't get as mushed by my cheeks in the evening, but it hurts to move/breathe and walk and I just keep getting puffier.

I have two second opinion appointments scheduled - one for this Friday and one for March. The one in March is with the rheumotologist I've seen before and who helped us confirm my lupus treatment plan back in 2012 when this all started (sort of). Prayers for wisdom and insight from these docs and for us to be able to accept what seems to be the general answer of "we just have to wait and see once you're off the steroids" would be greatly appreciated.

It seems about every other day I breakdown - overwhelmed with the uncomfortableness, a stab of anxiety of having to wait this out while we taper the steroids and not having the strength to see it through, the lies of the lack of thriving and not contributing constantly trying to win over the Truth that I know to be true.

Such bone deep weariness. I have never experienced weariness like I am now. My body is literally getting too heavy for my joints. My joints are weary, my heart is weary, my mind is weary. I pray for mercy, for this all to end, for a new season to start. Recently, my prayers were pretty whiny as I told God I was done with all this and I absolutely needed to know, demanded to know, when it was going to end.

Not even kidding, the phrase that boomed loudly inside my head was "My ways are not your ways."

I think I actually chuckled out loud. And then googled the reference. Isaiah 55.

I started reading Isaiah 55. I found the verse that had lead me on my search:

"For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord." (vs 8).

Well, that's encouraging, I was tempted to mutter cynically. The next verses? BUT GOD.

"For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts"..."so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it." 

Our world likes a guarantee with experiences, products, agreements. We (I) ask "are you sure? Where is that documented? Where is the contract?"

Shall accomplish. Shall succeed. This is more than buying a new car and being guaranteed the lowest interest rate. This is the Lord God saying that He is going to use whatever He brings about for His purposes. And He will succeed.

And Isaiah 55? It starts out with a series of entreaties to the reader to "come" to the Lord, to listen diligently, to incline our ears, to hear, to seek Him. And then He tells us that He has a plan and that's it is guaranteed to succeed.

I'm doing things out of order. I am demanding a plan before seeing who the Planner is. I need to seek Him first, to listen, to be still. To hear Him. To grow in my trust and knowledge and love of Him. Because then, then by His grace, my heart shall be more aligned with His, my thoughts and my ways reflecting His, instead of my own nearsighted, but very real to me (and potentially not helpful), desires. And guess what happens then?

"For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing, and all the trees of the field shall clap theirs hands.

Instead of the thorn shall come up the cypress; instead of the brier shall come up the myrtle; and it shall make a name for the Lord, an everlasting sign that shall not be cut off" (vs 12-13).

HOPE.

There is bright hope for tomorrow in coming to the Lord, in laying down our plan and seeking Him first before I throw my hands in the air and stomp my feet in frustration. He may not reveal His entire plan, but He will have built the trust in my heart to follow Him through it. And He promises joy and peace in the doing so.

Oh Lord for the grace to take a deep breath and look to You before I look to myself.

Ebenezer (Update)

I've been struggling to write because I have been surrounded over the past month with so many amazing articles, blogposts, sermons, emails, etc. from other people who are going through trials that I am afraid I may accidentally copy their words here. What that says to me is this: My God is consistent and His truths stand. From literally across the globe I have seen sentences written out that word for word match sentences I have had in my blogposts - both from this current trial and from others. It's been encouraging and also overwhelming at times, to see how much He cares for me and how He is working in the lives of others.

As for Ebenezer...not the Scrooge one (although we did watch both Mickey's Christmas Carol and The Muppets Christmas Carol in the last week, so my mind may have been influenced slightly :-). The Ebenezer I am talking about is the one that's mentioned in the Old Testament (1 Samuel 7:12). Samuel uses a stone (referred to as 'Ebenezer') to mark a spot to remember that the Lord helped them.

Jim and I have talked about how very much we don't want to forget all that God has been doing during this time - all the time he has used our village to encourage and help us, the times we have seen His hand move to bless us and to lead us in the direction that He wants us to go. We're going to make a list of Ebenezers. And the most recent one is what I want to tell you about.

We are still waiting. The third chemo treatment was a bit of a dud. I didn't notice any changes in my symptoms unfortunately. We will be increasing the dosage of the chemo drug during round 4. The good news is we are continuing to decrease my steroid dose. This is important for many reasons 1) steroids aren't good for you long term 2) the steroids are currently acting as both a pain med and anti-inflammatory. We want to see how I am doing on just the other pain meds so we can start tweaking those - you just can't change too many variables at once, otherwise you have no idea what was helping/hurting you.

I am still waiting to get in to see another rheumatologist. He's been out of the country all of December. I've been told he's agreed to "take my case" so here's hoping January holds some answers/new treatment options.

Thankfully, I have been able to continue getting out of the house more on outings - friends took me to  stores so I could get Christmas shopping done and Jim and I were able to go on a few dates to restaurants and then to look at Christmas lights (we've found a few restaurants in our neighborhood don't get loud and busy until later in the evening, so we slip in when we are almost the only customers and my head has been able to handle the ambient noise pretty well). I've also been able to start walking the dog by myself and we're up to almost a mile for walking. Slowly trying to build back muscle mass and stamina.

The two most challenging symptoms for me to deal with have been the head/brain fog confusion and the weight gain from the meds and water retention. We've found that I can converse and process conversation better at home, where I am in a familiar environment and the other inputs coming in (like background noise from the dishwasher or Maizie barking) don't affect my concentration since my brain interprets them as white noise. When I get outside of the house, that's where things get tricky. I struggle at the cash register if they start asking me questions about my day or my purchases. And by struggle, I mean, it takes me longer than average to think of my response and get it out of my mouth (and sometimes it comes out of mouth a bit mixed up) - it usually results in the person talking over me or just moving on to another question (and that confuses me even more!). As we reduce meds and as the inflammation hopefully continues to be reduced, this should get better (i.e. completely go away).

The weight gain has been a struggle because I look so different and I feel different. My face is very swollen and so is my torso. Steroid weight is different than normal weight, it's a different type of fat. It doesn't meld with your body like normal weight gain fat would - so this means it feels like my face is filling up with water and the pressure is going to make my eyeballs pop out. If you touch my face, you can actually feel the difference between the steroid fat tissue and my normal muscle/fat tissue. It's pretty weird. It also means it feels like I have a tight band around my torso and it makes it difficult to breath. I have a lot of water being retained in my legs too, so walking and bending my knees is a struggle. The constant fight against these "additions" to my body makeup  are quite honestly, exhausting, disheartening, and painful. I just hurt all the time and that is wearing on me.

But even in this, I see Him working. We had friends over for dinner (I can converse in small groups now (3-4 people - yay progress!) and one of them asked me why I thought I was able to get out more - was it the inflammation getting better or something else? I started to answer him and in that moment, I discovered an Ebenezer.

What came out of my mouth is this "I am able to get out more because I am becoming more comfortable with my weaknesses."

I am getting less self-conscious about how I handle spontaneous conversation and with how I look. This might sound minor, but reader, I promise you, this is HUGE. God is allowing me to see His power and sovereignty through my weaknesses. It encourages me that He is in control, that He knows what's going on, that He is not surprised by the length of this trial. I feel like I am learning to fight Him less and trust Him more.

"Some times the detour is the new path" - Vaneetha Risner

I've counseled myself and others that the other side of a trial doesn't result in your familiar "normal" but a new normal. And the old normal can look a lot better than the new, because the new is unfamiliar and uncomfortable and can still taste like the trial you've walked through. As Mrs. Risner  points out in her book, "The Scars that Have Shaped Me," we forget that the Old Normal wasn't all puppies and kittens, that it too was hard and a struggle at times. But we long for the familiarity, just as the Israelites longed for the Egyptian food when God was providing them manna in the desert (Exodus 16)

I still hope for complete healing. I still want this trial to be over with. But I am seeing the blessings in this trial, and I can't just sit on the couch and wait. I can be about His business even in this trial, Do I believe He heal me now? Yes. Do I want to know why this is taking so long? Yes. Do I want to, on the other side of this trial be able to say, "I saw God move and work even in the trial and I would go through it again to learn what I've learned about His character and my relationship with Him? Yes.

So, I wait expectantly, ready to be about whatever business He places before me - whether that looks like resting my eyes so my brain can get a break from processing, or praying with a friend who comes to visit, or date night including taking our dinner over to a nearby park and having a spontaneous picnic.

His power is made perfect in my weaknesses.

"My grace is sufficient for you, for my power is made perfect in weakness..."

Ladies and gentlemen, I am weak. 

"...therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Cor 12:9)

So, I will raise my Ebenezer here. To remember that God allowed me to see that His power is in my weaknesses and that boasting in my weaknesses reveals Him to others, points to Him, glorifies Him.

"Here I raise my Ebenezer;

Hither by Thy help I'm come;

And I hope, by Thy good pleasure,

Safely to arrive at home" (Come Thy Fount of Every Blessing)

Update - The Cost of Choosing Joy

It's hard to know how to start these updates out. We're halfway between chemo treatments two and three and while we have seen improvements in joint pain and fatigue and the frequency of my lupus flare fevers, we haven't seen the meningitis symptoms lessen. - the fogginess, confusion, pain, etc remain. So keep those prayers coming!

I started on two new meds a few weeks ago and we also started tapering the steroids that I am on. The last time we tried the steroid taper, I ended up back in the hospital because my head pain got pretty bad. On Sunday, I started on the dosage level that we got to the last time and my body is again rebelling - my head pain and fogginess has increased over the past two days. However, since I now know what's causing it (the taper) I am going to ride it out for a few days to see if things settle down - it also helps that I have Rheumo Doc and Pain  Management Doc appointments tomorrow, so I can get their weighing in on what's going on with the increased pain.

In general, I definitely have more endurance and stamina than I did a month a half ago. We were able to go to a friend's house for Thanksgiving! And while I wore earplugs the whole time and hid away where conversations were limited to one or two people, we were able to enjoy being out of the house and around dear friends.

Jim's parents came into town the week before Thanksgiving and were a great help in getting things done - like early Christmas baking and decorating and some yard clean - things that we really wanted to do but either I couldn't do on my own or they just weren't high priority given the current situation. Very thankful for them.

The Thanksgiving week was hard for me because we had planned to be in AZ celebrating with my family. Little by little during the week, I gathered small "hurts" to myself - things that I couldn't do because of this pain, this thorn in my side mengintis that just won't go away. And by the day after Thanksgiving (yes, a day in which the whole focus is on what we are thankful for, I get the irony) I had quite the list of things I WASN'T thankful for, things I was being asked to give up and it wasn't fair. It wasn't fair I didn't get to see my side of the family. It wasn't fair that I couldn't go Black Friday shopping with my girlfriends like I normally would (shout out to the hubby who did wake up at 530am and drive me to Home Depot so I could get the $1 poinsettias to decorate the front yard - he's not a morning person so it was very very nice of him), I couldn't do my Christmas baking the way I usually did it, or even watch Christmas movies because the sound the DVD player makes irritates the buzzing noise I already have in my head almost constantly. Not fair. Not fair. Not fair.

Holy temper tantrum Batman. I lost it and used many a kleenex as I cried out my woes and hurts and frustration and DONENESS with pain and suffering. I just didn't want to hurt anymore. Sure take these things away, but leave the pain out of it okay? Why do I have to deal with both?

My sweet husband listened to my cries and offered up two sentences. He said "well, I love you. And that's what I have to give to you, my love." And then he went outside to finish putting up Christmas lights.

I sat there, a bit dumbfounded. And then...yup..you guessed it... BUT GOD.

I realized a couple of things, one being a much needed apology to the husband, and two, I realized that the perfect and simple words that he had stated weren't just from his mouth, but from God. The Lord was reminding me that He loves me and that's what He's offering. His love.

And that thought brings joy to my heart.

I wear my "Choose Joy" hoodie to treatment. I have a plaque on the table nearest my usual sitting spot that says "Today I choose joy". What does it mean to "choose joy?"

There is a cost to choosing joy. 

In choosing joy, I am giving up self.  I am giving up my plans and choosing the plans that He has for me (Luke 9:24)

Choosing joy is dying to self, allowing His will to take the place of mine. To gratefully follow Him, in His yoke (Philippians 1:21, Matthew 11:30)

Choosing joy is desiring for His glory to be seen in He is doing and will do, not what I want Him to do (Romans 11:34)

Choosing joy is kneeling at His feet, available and teachable for His great work (2 Timothy 3:16-18)

Choosing joy is knowing He's working and moving, for His glory and my good (Romans 8:28)

Choosing joy is thinking of Him first (Deuteronomy 6:5)

Choosing joy is finding myself in Him (John 15:5)

Choosing joy is me decreasing and Him increasing (John 3:30) 

Choosing joy is knowing I am a daughter of God, that I belong to Him, and that He loves me (John 3:16)

Choosing joy is trusting Him to be the God He has already proven Himself to be (Isaiah 43)

I keep wanting to be at a certain place on this timeline of lupus and meningitis and pain and hurt and medicines and steroids. And He wants me somewhere different and I keep stamping my foot and huffing and puffing and crossing my arms.

Choosing joy is to sit where it may be uncomfortable and scary and unknown, but trusting and following Him wherever He leads, because His plan is perfect and He will be seen, not me.

"Looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God" (Hebrews 12:2).

The grace and mercy of the Lord to help me wade through these hard thoughts and my own frustration and faltering hope amazes me. I am so thankful that He allows me to seek Him and find Him and find comfort and peace in His word.

Today, I choose joy and pray that He will be seen through all of this.