Abide - the Forward Plan

To abide:

1. To wait for

2. To endure without yielding

3. To bear patiently 

4. To accept without objection

Over the last week, the word "abide" kept coming up in what I was listening to - Scripture, music, etc.

Last week, Jim and I started realizing that my recovery progress had slowed, even reversed in some aspects. Along with the meningitis head pain/fuzziness, my lupus has been out of control - joints, higher than normal fevers, fatigue, and severe stomach pain. The evenings have been pretty miserable. On Tuesday, I had an endoscopy done of my stomach (they stick a camera down your throat and take pics of your insides!). The good news is that the damage we thought might be there from some meds wasn't. The "bad" news was that the pain is due to inflammation of the lining around the outside of my stomach  caused by the lupus. That was the info we needed to call Rheumo Doc and press for a forward plan - I was done.

We met with Rheumo Doc yesterday and pretty quickly came to realize that my immune system has gone completely haywire. Rheumo Doc is also leaning towards the leftover meningitis pain actually being my lupus with Central Nervous System (CNS) involvement now. We're still not sure if my lupus triggered the meningitis or an actual virus, but the fact that the inflammation is lingering so long leads to the former. Lupus with CNS involvement includes cognitive dysfunction, vision and hearing impairment, pain, dizziness, stiff neck...all of which I am currently experiencing.

My immune system needs a reset.

The Forward Plan - Chest port and Chemo

So, next week I am going to have a chest port placed (it's a permanent IV that has a catheter that goes to a larger vein than the ones I have in my arms - my veins are completely shot after a few years of infusions and all the recent problems and it's been taking forever and many attempts to get an IV in me- the port will allow easy access for treatments and blood draws and can be removed when I no longer need it). Once the port is placed, I'll start on a 3-6 month round of chemotherapy.

Lupus is not cancer. Let's be very clear on that! However, chemotherapy works by suppressing ones immune system and mine needs to be be suppressed and reset so we can start over.

The chemotherapy that I will be doing is called cyclophosphamide (Cytoxan). It is one of the chemo treatments cancer patients get, however, I won't be taking the cocktail of harsher chemo drugs that cancer patients get so it is "shockingly rare" (Rheumo doc's words) that my hair will fall out. I will get the treatments once a month. Historically, lupus patients respond very well to this treatment and it has many people stabilize and even enter remission. It will be worth some rough months to potentially have an even better quality of life before all of this started! There's some bright hope for tomorrow!

Once the chemo treatments are completed, we will evaluate where my lupus is and maintain it with the same or different medications that I've used in the past. I am hoping that this will nip the current organ involvement (stomach/CNS) in the bud...and maybe even get me into remission (and it's been YEARS since I've been there...)

We're hoping that the chemo will settle the lupus, the remaining effects of the meningitis, and get me on the road to recovery and back to whatever the Lord has for us - we are so excited to be about His work and see how He will use what we have experienced to encourage and pour into others.

So the word "abide"... I realized that the description of my blog is from John 15. In that chapter, verse 5 states "I am the vine and you are the branches. Whoever abides in me and I in him, he who will bear much fruit, because apart from me you can do nothing." It's been staring at me since 2007.

I am just a branch on the vine.

I will abide in Him. I will wait for Him, I will endure without yielding, trusting Him, I will bear patiently by His grace, desiring His will, not mine. 

So, I'm sitting here, contemplating what abiding looks like, what that means for this season. And I am hopeful. Because He doesn't reveal these things and leave me hanging. He is SO very good to complete the good work He is doing in me, and in Jim through all of this. So I'll look to that peace that endures and the bright hope for tomorrow. For He is my hope.

"Abide With Me" 

(Audrey Assad version)

Abide with me, fast falls the eventide
The darkness deepens; Lord, with me abide
When other helpers fail and comforts flee
Help of the helpless, oh, abide with me

Swift to its close ebbs out life's little day
Earth's joys grow dim, its glories pass away
Change and decay in all around I see
O Thou who changest not, abide with me

I fear no foe, with Thee at hand to bless
Ills have no weight, and tears no bitterness
Where is death's sting? Where, grave, thy victory?
I triumph still, if Thou abide with me

Hold Thou Thy cross before my closing eyes
Shine through the gloom and point me to the skies
Heaven's morning breaks, and earth's vain shadows flee
In life, in death, o Lord, abide with me
Abide with me, abide with me

Expectations versus Reality

We started me on a new pain management regimen on Friday and I've had a few bumpy days. Trying to figure out when break through pain might hit and get ahead of it, rather than being surprised by it is tricky. Yesterday was unexpectedly rough and I ended up sleeping a good portion of the day. I am working on getting into my primary care doctor to help me track and trace all these different symptoms that I'm experiencing - it's hard to sort out what's meningitis pain/recovery versus lupus.

I am still making forward progress when it comes to daily tasks and I am seeing small improvements in stamina. I can visit with friends for about 1.5 hours before my head gets too "full" and I need to rest. The concentration that's required to converse/process seems to irritate my head and hearing and vision get increasingly worse. The good news is resting definitely resets all of that, so I am having some decent moments during the day too.

I'm learning how to spend my spoons during this recovery - it's different than just with the lupus. Right now, my mornings start early due to being uncomfortable and "time to take your meds" times. I get up and make Jim's lunch (so thankful I can manage that now for him) and make my breakfast. He leaves for work and I head back to bed to rest. We're having friends come "babysit" from 10am-2pm so I can have help getting lunch and to have a social visit. Afternoons consist of resting more - sometimes listening to a book on Audible or spent coloring. Screen time is very limited because it quickly causes brain fuzziness and vision issues.

I told Jim the other day that I experienced a first, I was just laying in bed, in the cool darkness of our bedroom, and just resting. Not thinking, not trying to figure out what I could do to keep healing. I was just THERE. And I thought, "Lord, is this what it feels like to rest in You, because, this is kind of nice!" :). Each day, I feel  I learn something new about resting in Him. I rattle of lists of things I am thankful for and remind myself, sometimes out loud, to just be still and to be content in the moment and not think ahead. Such a different way of thinking for my loves-to-be-doing-and-going-do-ALL-the-things personality.

Your ways are not my ways.

Before all this started, I had started my own study on Expectations versus Reality, but specific to this new married life that I am blessed to experience. I had even started writing a post in my head. This current trial fits in well with what I was beginning to learn. My lupus had started flaring pretty soon after we returned from the honeymoon and I was struggling to be the wife I wanted to be while feeling so lousy. The Lord showed me that I was setting all sorts of expectations that neither He nor Jim had - I wanted to be the perfect wife, the perfect homemaker. How was I not able to get stuff done when I had friends who are full-time working moms and they were able to pull it off brillantly? I was measuring myself against them and falling short in my eyes. I was trying to learn a new spoon juggle and was overspending everywhere.

Like a smack upside the head one morning while doing my bible study, I realized what I was doing. I was considering my standards more important that God's. I had crammed myself into my little "Perfect Wife" box with a certain set of rules and standards and was leaning on my own strength and knowledge and wisdom (snort), and not His. A wonderful dialogue started with me asking for forgiveness for my arrogance that I KNOW BEST, instead of Him and then looking at what it means to surrender my expectations to His reality.

What are His expectations of me, me not just as a wife, but as a follower of Him?

"You shall love the Lord your God with all your heart and with all your soul and with all your mind" and "you shall love your neighbor as yourself" (Matthew 22:37-39)

In my study so far, that's it. The other commands I've come across so far about how to be a follower of Jesus, how to be a loving sister, daughter, friend, wife, mother, fall into those two commands, the Great Commandments.

Wow, do I overcomplicate things :).

And so, as I sit in this season of needing to rest, to be still, I am trying to focus on those two things - loving the Lord and loving others., not on what I can or can't do or accomplish right now. The struggle is real folks, to do this, but with His grace, I know I can, because He sustains, equips, and provides for His children.

My expectations of myself did not reflect the reality of what God was and is asking me to be. And His way is so much better. How hard it can be to surrender and trust, but when we do, oh what a sweet place He has for us to rest.

In Him.

Strength for today

Listening to that song and being able to write out my thoughts and emotions has been a turning point for me. I share the rawness and ugliness because I think it's important to know that it's okay not to be be okay. It's okay to question and process and work through things. The point is to keep moving forward and to speak truth when I want to listen to lies. I have to constantly remind myself that no one, including Him, is asking me to walk perfectly through a tough time and be all rainbows and kittens about it. I am overwhelmed by the encouragement, truth, and strengthening He provided through all of you who commented and messaged me. Throughout this ordeal, we have felt so surrounded and supported and loved. We have such a good God to sustain us.

I am learning to be content when it's hard to be content. Yes, it's good to long for and hope for "all the bright and joyous things" that I mentioned in my previous post, but I also need to learn to rest and be joyful where I am. Each morning I am waking up and listing the things that I am thankful for and noting any progress that has been made. And reminding myself that slow is okay. I am not missing out on anything God would have for me because I am right where He wants me to be. At His feet.

Progress is happening, I am able to sit up more, can do more things in the kitchen (we've found that me sitting on a stool, rather than standing, helps me get more done without being so tired) and I can converse longer with the wonderful ladies that have been keeping me company during the day before my head gets all buzzy-fuzzy-shuddery. The pain in my head is changing, which I hope is a sign of healing.

One of the challenges we are facing is that my lupus was flaring badly before the meningitis and is continuing to flare, but I am currently off all my lupus meds (besides a hefty daily dose of steroids to help with lowering inflammation). My immune system was going so haywire that we needed to pull back and just try and get it settled. My stomach issues from years ago have returned, so we are looking at how the pain meds treat my head (neuralgic pain) and my stomach pain. The pain meds slow your system down. My stomach was already having issues before the meningitis...food sits too long and causes nausea and pain and acid backs up. Thankfully, my pain doc, stomach doc, and rheumo doc are all at Houston Methodist and so they can put their heads together and work a plan for me. Forward plan is still up in the air as we wait and see how my body handles recovering from the meningitis and the lupus flare.

I have also been able to see how much the medicines are helping relieve pain (forgot to take a dose and wowee...). Appreciation and thankfulness for them has helped me to be more patient. Your body can't heal if it's constantly fighting pain.

I'm drinking bone broth and turmeric tea and juicing and smoothing all the anti-inflammatory fruits and veggies I can :) . We're also using acupuncture to keep the blood moving and hopefully relieve pain. Lots of yoga stretching going on as well. Two weeks ago, I couldn't even imagine doing some light stretching, so movement is a huge sign of progress as I am learning to adjust to the weird pressures in my head and correct for imbalances.

"But now thus says the Lord, he who created you O Jacob, he who formed you, O Israel; "Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall notoverwhesm you; when you walk through fire you shall not be burned, and they flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior..." (Isaiah 43:1-3)

I want my heart to be aligned with Him. That the bright and joyous things I seek are the ones He wants me to seek, to pursue. His will be done, not mine.

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." (James 1:2).

My faith is being grown. Oh to be steadfast!

He provides strength for today. And that is enough.

Looking for New Mercies

This isn't going to eloquent or smooth, it hurts to search my mind for the right words or to connect thoughts together. In fact, I am typing this mostly with my eyes closed because the words make me dizzy and word proofing will be limited, so please bear with me.

Jim is at church this morning and I'm worshipping at home. He texted me to say that they are singing "Great is Thy Faithfulness" this morning, That was the hymn I chose to have sung at our wedding because it reflects so much of what God has done in my life.

I read his words and pulled up the song and started listening to it and the tears started flowing because I am struggling so much with believing in those words That his mercies are  new every monring. Every morning I wake up and something has changed. The pressure in my head is different and I have to adjust to a new level of dizziness and nausea while fighting the feeling that my face is going to explode off my skull or that a little steam spout will form at the top of my head. The pain meds muffle the pain so much that my ears feel they need to pop and they can't.

The nerve medicines that are helping to hold back the headache pain have made my extremities numb...my gums are numb - it's a weird sensation.

It's hard to live in a muffled world when I want to experience all the bright and joyous things. To be out from this fog and to live life like normal again.

Normalcy, That's what I want.  And it's coming so very slow.

But it's there. Jim set out all the ingredients for me to make pancakes yesterday and on the second attempt (I am having trouble reading lines on a page so I blurred two lines together and add way to much baking powder) and I was able to mix up a batch for him to cook. That's progress.

I made tea by myself too. And I can mostly wash my hair by myself, depending on the time of day and what I've done before.

Those are my achievements right now - just trying to get the basics back down. It's so very humbling and yesterday I found myself standing in the kitchen, trying to get out ingredients to make a sandwich and just began sobbing because I had absolutely no strength left. Jim is a rock and sat me down on the couch and made me my lunch while I blubbered the whole time. I so wanted to do it by myself and ease his burden.

I am going to listen to "Great is Thy Faithfulness" on repeat this morning and ask to see these new mercies. Because my previous blog posts though trials remind me that they are there, that He is faithful. 

Dark moments are okay. It's dark today but I look forward to the light and newness tomorrow and will keep telling myself to trust Him that he will provide the strength for each day forward. 

I will get better in His perfect timing. My release date from the hospital last week was 8/28 and I spent some considerable time over the past weeks thinking on Romans 8:26-28 (thankful for audio Bibles). This verse and that hymn, going to work on writing this on my heart.

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose. 

Great is Thy faithfulness! 
Great is Thy faithfulness! 
Morning by morning new mercies I see. 
All I have needed Thy hand hath provided,
Great is Thy faithfulness, Lord, unto me!

The Lead In...

I started flaring a few weeks ago. I thought it was my infusion "running out." Three days post infusion, my joints were still wonky and I was still running fevers. Last week, we did a "industrial dose" steroid drip (my rheumo doc's words :) ). Initially, it took the edge off my fatigue, but a day or so later, I could barely walk due to inflammation in my left ankle and hip joints. Unfortunately, rheumo doc was out of town until yesterday, so I've been a big fan of laying in bed and sleeping this week :) . The fatigue I am experiencing during this flare is CRAZY. It's never been this bad. Jim will be talking to me and my eyes will just close and I CAN'T keep them open. Very weird feeling. And my limbs feel weighed down a lot of the time. Creepy.

Rheumo doc got me in yesterday (have I mentioned how much I like my rheumo doc?) and we went over my list of symptoms (pretty much every lupus symptom I've ever experienced has reared up, including stomach issues and an awesome red rash on my limbs). We talked over the meds I've taken in the past. Short term solution is to up the dosage of one of my immunosuppressive oral meds and see if that can settle things. This bummed me out because I spent the last two years weaning down my dosage (from 3000mg to 1250mg) and I've sat stable at 1250mg for about a year. We upped it to 2000mg. And I'm getting some labs done today to see what's going on with my counts and if there is any infection about that might be causing the flare.

Long term is seeing how the upped dosage works in connection with my infusion I have in about a week and a half. If I do okay and get better, then we will leave things as they are and monitor. If not, I will either add a new oral immunosuppressive or switch my infusion meds to a different one. I'm glad we have options.

In the meantime, I've (of course) been researching what else I can do from a naturopathic perspective.  I came up with a list of things I do already that I need to continue doing (clean eating, low sugar, yoga, enough sleep), things I need to be more disciplined at (less caffeine, less red meat, less sugar, no potatoes), and things I can add (fish oil and turmeric supplements, hemp protein powder smoothies). All of those things help with reducing stress and inflammation in the body (or at least, so say the many people that do them and some supporting studies :-) ).

All of this comes at a time when I have been recognizing my perfectionism coming out as I learn to be a wife and to balance work and life in this new role. And I am seeing that my expectations don't match reality. And God's expectations of me ARE reality. And I am learning to humble myself and submit to Him.

And that's the lead in for my next post :)

So yay for doctors and meds and options! So many things to be thankful for even though I can't explain why I started flaring or what caused it.

Not mine, but Yours

I woke up at 4am this morning. My old back issue has been flaring up lately, so I was uncomfortable. I woke up feeling tired and not rested and hurting. I took out the bible study I am going through with a friend on Genesis and began my study. As I reflected on how He created all, even me, and how He is renewing me every day through His word, and that I am new, I suddenly felt very weary and old.

My not-so-secret wish and prayer has been to feel well on my wedding day and honeymoon, and even in these final days leading up to this long awaited (and prayed for!) ceremony, so that all the details will reflect Him and make our guests feel loved and appreciated (my other prayer has been that this crazy hot weather would relent and not make everyone miserable at the outdoor reception!). I KNOW He is able to make all of this come about. I don't doubt that. But, what keeps coming to mind is how He uses my health struggles to point me to Him. How He has used my health struggles to show others Himself.

I might not feel my best.

I sat there, staring at my journal pages (because, oh the heart toiling and moiling going on required some writing to process!). I realized that I had once again put my desire to feel good as more important than what He wants. He might want me to feel good, and that's how He will be proclaimed. Or He may want my tiredness and hurting to turn me more towards Him, to soften me to those who are attending the wedding also hurting and tired, to make me more compassionate and sensitive to the needs of others.

So after some tears, and some heart-squeezing by Him, I was able to write out, "not my will, but yours." If Jesus wept in the garden before His death asking for what was about to happen (his arrest and death) to pass from him, but offering up the Father's will before His own, I surely, by His grace, can yield my desire to feel well, to His will, to His perfect plan. Because His will allowed Jesus to die, so that He could be raised on the third day and so that I could have my sins washed away and have eternal life with Him.

Oh to wonder and hope at what could He do through my tiredness and hurting to show how wonderful and glorious He is!?

Oh that His will would be so tightly wrapped around me on my wedding day, that everyone will see Him and not me.

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day." 2 Corinthians 4:16

 Yes, I still am praying for healing (and good weather) and for mercy, but my heart has a peace and contentment it did not have when I first woke up. Whatever happens, He is not absent. He is active. He is aware. And He is being made known.

Dear reader, He is so good and kind to me.

Even In This: Thinking about Marley’s Chains

http://christmas-specials.wikia.com/wiki/Jacob_Marley

In order to feel my best on my wedding day (and for the honeymoon) my doc and I have been shifting my infusion (my IV meds) to make sure I get my meds fairly close to the wedding date. I usually feel my best during week 2 and 3 after an infusion. In order to do this, I am waiting 5 weeks between infusions instead of the normal 4 weeks. I have done this in past with various success – sometimes I am perfectly fine and get surprised when I see that my infusion is the next day because I feel good and don’t “feel” I need it. Other times I have counted down the hours until that needle goes in.

My infusion in April was VERY much the latter case. With wedding planning and some very stressful work weeks, I had been running a fever close to 100 for almost two weeks. My entire body ached and I had severe fatigue…I had to get into bed when I got home to relieve my aching joints and went to sleep even earlier than I normally did.

Surprisingly, I actually felt worse after my April infusion for a few days, beyond the usual side effects. After having to leave early from what was supposed to have been an all day class for my biblical counseling training because I was hurting so bad and needed to sleep, I was feeling pretty frustrated and discouraged at this thing called autoimmune disease.

As I lay on the couch, amazed at how tired I felt (my limbs even felt heavy!), for some reason, the picture of Marley, from Dicken’s “A Christmas Carol” appeared in my mine. I realized that I likened lupus to Marley’s chains. Marley thumped and bumped and clanged around with his chains. Mine hold me back, hold me down, prevent me from doing what I want to do (fun stuff) and even what I need to do (housecleaning, work responsibilities, etc). These chains limit me.

I lay there for a few minutes, enjoying my dark sense of humor and relishing a little self-pity (I’m not proud of that, but it happens so it’s good to fess up J ). And then I (by God’s grace) stopped thinking about myself and thought about Him and wondered what He would think of my negative image of ‘ol Marley and my lupus. “There’s got to be a better image I can replace this with…”

I think this image is still in work, but I’ll let you in on where I am currently and for my own personal record to reflect back on: I thought of Paul and the “thorn” in his flesh that he refers to. This thorn is never revealed – lots of people speculate that maybe it was a physical illness or a speech impediment. We don’t know. What we do know, what the Bible tells us, is how Paul viewed it.

            “…a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. Three times I pleaded with the Lord about this, that it should leave me, But He said to me ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I (Paul) will boast all the more gladly of my weaknesses so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong”

                                                                        2 Corinthians 12: 7b-10

There are a few things that stand out to me in this passage:

1) "To keep me from becoming conceited"

I can be OH SO prideful in what I can accomplish. I love to do lists, I love controlling those to do lists. I truly believe that having lupus MAKES me turn those lists over to God. To say “what do YOU want me to accomplish today?” rather than “What should I accomplish today. I find that when I am the most frustrated at my disease it is when I am not asking God what He wants me to do in it.

2)  “Three times I pleaded with the Lord about this, that it would be removed” – I’ve pleaded, begged, I’ve said “enough! Don’t I deserve such-and-such!?” He always answers, but not in the way I think He will and honestly, not always in the way I think He should. His ways are not my ways and I do not have His mind (Rom 11:33, Isaiah 55:8). Oh but to have His mind! To put my own thoughts and desires and wants aside and want what He wants more than what I want! And to see that His way is indeed better.

3) “But He said to me…” Oh that lovely “but.” God doesn’t leave us without an answer. He may leave us without the answer we wanted. The silence or inaction that I perceive is often a wonderful and great display of His love for me. Because He knows, He knows what I need more than I do. He knows that this trial, this hardship, is going to grow me in ways I cannot yet see, it is going to show me more of Him than comfort or ease would. What encouragement! God always has a “but” for us, we just have to learn, by His grace, to see/hear it.

So the questions I have to ask myself, and, if you’re going through a prolonged period of trial/hardship/suffering and you’re wondering why, or you’re so past wearisome, just thinking about it makes you burst into tears, I hope you ask yourself these questions along with me. Be specific and write down your answers. Spend some time reflecting on and review them. Have someone help you answer them if you can’t come up with an answer yourself. God puts amazing people into our lives, both people who share or don’t share our beliefs, to help us.

•  Am I thinking more of God in this trial than I am of myself?
• How is God using this trial to grow me in my relationship and knowledge of Him?
• What can I be thankful for during this trial?
• When was the last time I shared with someone what God is doing in my life through this trial?
• Where is my hope? Is it in this trial finally ending or in that God is working EVEN in this trial?

I am amazed at how quickly I can forget the truths that I read, the prayers I pray when I hit a rough patch of disease symptoms. I am thankful that I feel I more quickly go to Him and think on His words than I used to, but man, oh man, how often do I have to remind myself, yes Melissa, EVEN IN THIS, He is working all things for His glory and your good. EVEN IN THIS.

So EVEN IN THIS, even being frustrated that I often can’t do what I want to do, I often can’t finish my to-do lists, or visit with the people that I want, or attend the class I want, or serve in the way I want, EVEN IN THIS, He is working. He is giving me new areas to focus on, ample time to pray and lift up people to Him, teaching me to ask for help and admit my weaknesses.

Here’s to being more aware of Him and His blessings instead of me and what I call my limitations.