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.

Three Months

Three months ago, Jim drove me to urgent care that ended in an ambulance ride to the ER and we started down this twisty turny rabbit trail of meningitis and lupus and pain and learning and growing and being COMPLETELY DONE LET THIS CUP PASS and surrendering and abiding and wavering and being weak and amazed and choosing joy and struggling and...finally sitting down to try and make heads and tails of promises and word studies and lists of Scriptures and prescriptions and wanting desperately to document the perfect timing of God and the love of friends and family, to capture the kindness and generosity and love that we've experienced...that we've been overwhelmed with.

And I can't. There is so much. So I am going to give snippets, statements, glimpses into what we've seen and heard and felt.

The most recent? I had a massive emotional meltdown last night. A tiny part of that was me recognizing that as much as I have loved being able to prep and cook dinner again, it's been taking it out of me this past week as I've dealt with some more different/intense head/neck pain/and thought fog. I didn't realize how much that bummed me out and I didn't want Jim to have to pick up that task too...so we prayed. And we asked God for mercy...for the whole situation in general, not the food specifically. And at the same time we were praying, a coworker, completely out of the blue, texted to say she was making a meal to bring over on Saturday...and then this morning, my friend/helper for the day ended up bringing over a meal as well as taking me on an outing to pick up a few things. And then I realized that we already had one planned delivered meal scheduled for Saturday and I had forgotten another friend was bringing something over before the end of the weekend in prep for chemo week.

You guys.

In less than 48 hours the Lord provided 5 separate meals for us, several of them freezable for next week when I'll be out with side effects and Jim won't have to worry about dinner.

The Lord provides. Fully, completely, abundantly.

I could sit down with you and my phone and show you a slew of text messages that I've received over the past three months and give you stories in the double digits how each of those came in a dark moment, when I was struggling with this journey and ready to give up or where I was believing the lies that would flood my mind. Text messages and emails telling me that I was being thought of, prayed for, well-wished, held up.

I can tell you of feeling I've lost myself amidst the haze of medicines and inflammation and confusion and pain and how He reminded me that I am not defined by my list of diagnoses and meds and progress or lack of progress, but I am defined by Him and I belong to Him. And how as He moved in my heart and mind to assure me of this, at the SAME TIME multiple people would email me and text me verses and encouragement, all of which were of the same thought - that He has me. He knows me. He has not forgotten me or Jim.

This journey is being used I am told. Used to show Him to others. I know it's being used to teach me that I am the weakest of the weak, and in that lies His strength. His power made perfect.

The Lord is kind.

Even in the hard moments, the open-ended questions, the statements of "now we wait and see" and "this is going to take longer than we expected".received at a recent doctor's appointment.  At the SAME TIME, an email received from work, stating that I have received an astounding amount of donated leave time and am covered for this unexpected extended waiting period and healing time. COVERED.

His kindness is thorough, not lacking. Full.

The Lord is working and active and present and THERE.

A sweet friend's own journey has been a lifeboat for me - questions and concerns and relating and getting it. Understanding not wanting to try to do a normal task because that task has suddenly become SO hard and it's humbling and scary and new. And you wonder if things will ever go back to how they were. And then you realize, you don't want them to go back to where they were because you aren't who you were anymore. He's changed you and stretched you and made you cling more to Him and to know Him so much better and deeper. And the sweetness of that realization, that even in this, even in this, He is. And He has you, despite your best attempts to convince yourself otherwise and listen to the lies. You look at the evidence before you and...

My God is huge.

So three months...

He is abundant in all things. He is kind. He is I AM.

"Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever, Amen" (Ephesians 3:20-21), ESV.

"Wait for the Lord; be strong, and let your heart take courage, wait for the Lord!" (Psalm 27:14), ESV