Thursday, August 15, 2019

I believe! Help my unbelief!

About a month ago, a friend of a friend reached out to me. She was going through a scary medical issue and asked the question "how do I trust God in this?" As I typed out my response, I found I was not just trying to answer her, but also answer the questions in my own heart. I was preaching to myself and suddenly realized how much I wasn't trusting God in some specific areas. Here are some imperfect steps I've found myself going through when realizing I'm not trusting. I hope they encourage you in your trust of Him.

To start with, it's sneaky - mistrust. I think I've nailed it in one area or topic in my life and then BOOM - there it is again. How come I have to keep revisiting this topic!? Mistrust, or not trusting, can disguise itself as so many things- the need for control, the need to plan and prepare, inflexibility, the desire for comfortability, etc. The need for control, for instance, will look different from season to season and that's why, at least for me, I don't always recognize it.

We must learn to recognize when we are not trusting in God. It could look like constantly worrying, not being able to stop thinking about something, a deep heaviness in your stomach or heart, increased irritability, inability to focus on God or even want to think about Him, excessive busyness. I think back to previous instances when I became aware that I was not trusting in Him - what was I doing and thinking? What were my internal thoughts at that time? For me, it's usually that I haven't been in the Word, that I haven't been praying. That it's been more about me and much less about Him.

Once I've determined that I haven't been do I start trusting?

First: "Be still and know that I am God; I am exalted among the nations. I am exalted among the people." (Psalm 46:10)

I think it's important to read this verse in its entirety, not just the "Be still and know" part. This is because this verse is not about us, it's about Him. We are still because He is to be exalted. We want to know Him, because He deserves to be honored and glorified. We don't do it to seek answers for ourselves. We do it for HIM. Because of HIM. To Him. Just that slight adjustment to my thinking helps remind me that this is not about me, it is about Him. Sure, I'm feeling affected, I may be suffering...but as I look to Him - the Spirit works to shift my thinking to "how can this exalt Him? How can this honor Him?"

Second - Remind yourself who God is. Meditate on His attributes and character. It's a whole lot easier to trust someone you know rather than someone you don't know. And because we all can come up with what we THINK God is, go to your Bible - because that's what God uses to tell us who He is. There are some great resources out there that list the attributes of God and the location in Scripture to study more. Do some googling.

Third - Pray! It may seem simple, but we are to ask God. Ask Him to help you trust. To desire His way and not your way. This is where you cry out "I believe, help my unbelief!" (Mark 9:24). You may be at the point where the situation is so bad, there is just no way out of it, no way God could change anything. He can help you in your unbelief. Ask Him. Nothing is impossible for Him (Matthew 19:26). He is working things out in a way that may be different from what you think it should be, but I guarantee you (because He does) that it is for His glory and your good. (Romans 8:28).

Fourth- Take those thoughts captive (2 Cor 10:5). Don't let your imagination run away with you. If you think something scary or something that makes you worry - stop that chain of thinking and take it to Scripture. Ask "What does God say about this?" "What does God ask me to do with this/in this situation?" A lot of times, it will be become clear that you are worrying (i.e. not trusting in Him). Confess that to Him. Remind yourself again of His character, His faithfulness and why you can trust in Him.

Fifth- Praise Him! In a hard trial or weary season, it's easy to be more aware of what's going wrong, what "needs" to change. Start listing out things you can thank God for - it may be the smallest of small things to you: "thank you for waking me up this morning, thank you for the sun shining/the rain falling, thank you for coffee," Those "small" things mean something! Thank and praise Him for the work you see Him doing...and I bet you'll start seeing more and more of the work He is doing. And guess what? You'll start trusting Him more in your situation because you see the work that He is doing and can trust Him to continue doing work in your life! It's this pretty awesome cycle my friend.

I find this process helps me- there's probably a bunch more little "steps" and tangents my heart and mind go on, but I think this captures the jist.

I don't intend these steps I share to be trite - there are some horrific situations you might find yourself in and I absolutely understand that trust will not come easily. Please know that you are seen in your situation and that you are not alone. There's no time expectation for learning to trust - His timing is perfect. My encouragement is to not despair, but to continue to press into Him, to seek Him. It is a work of obedience on our parts and mercy and grace on His to bring about increased trust in Him. 

For those that are in Christ, we can rejoice in this:
 "Fear not, for I have redeemed you; I have called you by name, you are mine."
Isaiah 43:1

Tuesday, March 19, 2019

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'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?

Monday, February 19, 2018

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 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.

Friday, January 5, 2018

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.


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?) 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).

Thursday, December 21, 2017


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 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!

Monday, November 20, 2017


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.


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 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.

Tuesday, September 19, 2017

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.


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.