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.

The Lost Days

I feel like that's a fairly dramatic and not entirely true title, but it's what I am feeling so I am going with it. These days, August 11-28, are my "lost "days from last year. The days I was in the hospital. I know they aren't truly "lost" - lots of things happened, lots of good happened. But they are my lost moments, plans, and look-forward-tos. And there is a type of grieving that happens when you look back at what might have been. It's okay to look back, but not okay to stay there. Often, looking back allows remembering and being able to see a bit of the bigger picture, one can generally be amazed at the good and great that happened. And we hope, in looking back, to see a reason, a purpose, for whatever it is we are reflecting on. But often times, we can't yet, or might never.
How does one come to terms with the "might-have-beens" and "shoulda-woulda-couldas?"

I've been talking to a couple of gals who have also recently passed that one year milestone, one year since something unexpected and life-altering happened and you're still not where you thought you'd be, normalcy or "new normalcy" as I like to call it, hasn't been obtained. And I found agreement with the feeling of dread as that day approached. And the almost guilty feeling of being sad about what felt lost because, as a believer in Christ, as a follower of Him, I am supposed to remember and know that He is sovereign, and good, and that all things work together for those who love God and have been called by Him (Romans 8:28). And I DO believe that. But it can be hard to remember in dark moments and it doesn't keep the real tears or real feelings from crowding in  - tears and feelings that He gave me, gave us - so, how do I process?

I don't know.

I'm still figuring this out, as are my gal-pals in suffering. One thing I know, is to speak truth against the lies and to not entertain the might-have-beens. To give them their time, acknowledge, grieve, and to set them on the shelf and look forward. As all things that you set on a shelf, it can be taken back off, and I have to fight that urge. I have to put something in its place. For me, I am finding that reciting to myself how I have seen Him move - through a friend or doctor, through my husband - to encourage me and remind me that I am not alone and that He is there. I remember where I was and where I am now. I'm finding the cost of choosing joy in this - the laying aside my expectations and goals for progress and re-accepting His. Reminding myself and being reminded by all the lovely friends and family I am surrounded by, that progress continues to be made, and that His timing is perfect, and that I truly have a wonderful life, despite the fact that the past year didn't meet my hopes.

"Weep deeply for the life you hoped for. Then wash your face. Trust God. And embrace the life you have." - John Piper 

I've been trying to put together a single post summarizing this past year. It's not going to happen. There's just too many flavors to try and mix into the pot.  So, I am going to sit and marvel and share tidbits and musings and hopefully the TRUTHS that He gives me over these next couple of weeks. Remembering, praising, reflecting, and continuing to heal - spirit and body. Because I know there are others walking through hard stuff and feel like me, trying to figure out the balance between grieving and moving forward; giving praise for His gracious sustaining and giving prayer for future hopes and dreams.

And one of those lost days has already been replaced.

Last August 12th, we were supposed to go to Brazos Bend to watch the Perseid Meteor shower, but it was my second night in the hospital. This past Saturday (August 12th), we went to Brazos Bend and watched the shower. We saw a handful in the hours that we were out there (the peak of the shower was way past our bedtime). We sat on the same dock where Jim asked me to be his wife and watched the stars fall. And rejoiced that we could be there.

I am thinking that lost days can be rewritten by choosing joy.

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.