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.

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.

Fight the Lies

My lupus has been flaring for four weeks now. It started with a trip to the dentist.

The dry mouth I get from Sjogren's causes bacteria to have a party in my gums from time to time and I need a deep cleaning to get it back in order. Some of the bacteria got knocked into my system and my immune system decided to join in on the party by giving me a fever for 4 days and swelling up my joints.

We had shifted my infusion date to be almost a week late because I would be in AZ for my next scheduled one and my insurance won't cover an out-of-state infusion. So we shifted everything so that I could get it done my first day back in Houston (I can only get them every 4 weeks, so I can't move them closer, can only space them out further). So I was VERY ready for it!

Strangely, the infusion made no difference and as the week went on, I wasn't able to walk very well because my hips, knees, and ankle joints were so swollen. I called my doctor on Friday and requested an IV of steroids - something I rarely do because I don't like getting steroids  - but desperate times call for desperate measures. I got my happy juice and by Saturday, was already much improved (aside from the roaring headache that accompanies such a large dose of happy juice :) ).

The connective tissue around my shoulders didn't seem to be affected by the steroids though. Over the next few days, that tenderness increased to severe pain that ran up the back of my head and down my right arm to my fingertips. I got into the sports med/chiropractor and was informed that one of the muscles in my shoulders (can't remember the name) was so swollen that it was hitting one of my nerves (hence the pain in my arm).  I started therapy to help relax the muscle and bring the inflammation under control.

It still hurts to drive but I can sit up better and do things with my right arm much better now, praise God!

As I talked with the chiropractor, I was trying to figure out what I had done wrong to cause the intense shoulder/neck pain and how I could avoid it in the future. I was told that it was most likely caused by me tensing up when I was in pain the previous week. He urged me to not try and "suck it up" next time and get some pain relief.

His response frustrated me for two reasons: I hadn't felt like I was sucking it up and how the heck am I supposed to NOT tense up when I'm hurting?

And then I started thinking that maybe I should have started antibiotics before my dental work, because that was the real culprit of the flare and WHY hadn't I thought of that. Or why didn't I think of my vacation in September so I could have started planning to slip my infusions by a few days each month, rather than by a whole week, to reduce the shock to my system (or rather, lack of shock to my system :) )

These trials bring so many lies to my mind, that I find I am not just fighting physical pain, but spiritual and emotional pain as well. Lies such as "you should have known such and such would have caused problems, you're such a slacker when it comes to discipline" or "you'll never be normal so you might as well stop trying to be" or "your coworkers/friends/boyfriend won't want to deal with you anymore because you are such a hassle, not able to be there for them or carry your load" bombard my heart and mind. I've learned to do battle with Scripture and by sharing my struggles with a few close friends so they know how I am feeling and can correct me, encourage me, and pray for me.

But it's a hard battle.

It makes me weary at times. And I feel silly at times too, because I know the truth...it's just hard to believe it sometimes. Pain makes one vulnerable. And the enemy LOVES to take that opportunity to whisper those lies to us. And because I'm a sinner and can enjoy a good self-pity session, I can entertain those lies, rather than fight back.

I'm writing this as a reminder to myself to FIGHT those lies.

God is bigger than the enemy. We know that God has already overcome the enemy. He has overcome my sin, my weaknesses by His death on the cross. I need to remember that, and reader, I want you to remember that if you're finding yourself listening to lies, lies that you're not good enough, that something's wrong with you, that you're lacking. He is sufficient for everything and everyone. Our hope must be in Him. It is from Him that we draw our strength, our courage, our ability to persevere and "suck it up"...and He uses our trials to bring Him glory, to show Him to others.

So keep fighting. Fight with the truth that is in His word. Fight by reminding yourself of all the times He has provided, sustained, been faithful to you, and amazed you with His love and goodness. Just fight.

I'm going to be fighting with you. 

A Mountain Only As High As My Knee

I thought it would be my hips. Or the malaise and fatigue. Or the fevers.

I didn't think it would be my knee.

I initially started this post out all poetically and fairly dramatic...but then I realized that it would make it seem like this was a really bad thing. And it's not. It's a pain in the butt, er, knee thing, but by the grace of God, it's not a Big Honking Deal. He kept me healthy - I didn't run a fever, my hips didn't act up and I never felt sick...all without my infusion! Praise be to Him! But this is a Thing. A Thing I need to process, to work through, and to release to Him. So, I write...and I kinda wrote a lot... :)

My right knee started hurting our first day of hiking, towards the end after about 9 miles or so. I've never had knee problems and I had trained quite a bit for this with no issues, so I was surprised by it. It got pretty bad before we got back to the campsite after a nice little jaunt to climb Emory Peak. The next morning, it was gone as I made my way around camp and packed up.

Conquered Emory Peak!

About two hills into the second day's hike, it twinged...mostly on the downhill, so it was doable since it was fairly undulating terrain...and then it became mostly downhill and I was hurting. A tasty lunch and boot removal time rested it pretty well and we started off again, all flat land this time and I was on cloud nine, pointing out familiar cacti and creosote bushes, enjoying the sun and breeze and company. We started on the Dodson trail and a few miles in, I was inwardly cringing at each downhill. And then we began "threading saddles" and my stomach squeezed a bit as the knee pain intensified and I finally cried (somewhat literally as a tear or two was shed towards the end) "uncle" and a campsite was found and to my very thankful knee, it came complete with an icy little (and I mean little, like 4 inches wide and maybe 2-3 inches deep) stream of water which soon had my knee completely numb. Ah. Bliss.

It was COLD!

The next morning, my group had made a decision that we were going to cut the last 10 or so miles out from the hike - they were concerned about my limping. I knew I wouldn't be able to do the remaining distance and I heartily agreed with the plan. They were so gracious and kind, I didn't feel bad (well, too bad) about being the reason plans had to change (God's grace again - that was something I had worried about).  I gimped another six or so miles and then we reached the best campsite of the trip. Our shortened mileage also meant we got to have a leisurely afternoon in camp.

The view at our last campsite

I loved everything about backpacking. Except carrying water. Because water is heavy. And it was a GOOD trip. I mean that, knee pain and all.

Ending the trip with a drive to Santa Elena Canyon at the Texas/Mexico border in Big Bend.

After seeing a sports med chiropractor for therapy for a week with no improvement, she ordered a MRI and Xray, and upon reviewing them, sent me to an orthopedic surgeon because they showed a mildly dislocated kneecap, stretched and inflamed ligaments, and some concerning inflammation. She said surgery was a possibility, depending on the surgeon.

I planned to get multiple opinions and saw the first surgeon (a very good one) today. The good news: I am not a surgery candidate right now. Maybe in four months if the pain is still the same. The bad news: "the best thing for you is to rest and wait and see if it gets better." While I double fist-pumped the no surgery news, I'll admit my smile was a bit plastic when he said "wait." Ah, the dreaded word. And of course, he mentioned that the lupus complicates things because my body holds onto inflammation and that would delay the healing and recovery process. "You lupus and RA patients are all difficult, nothing works like it's supposed to when these things happen"...took the words right outta my mouth doc!

So, now, I process. I'm not terribly upset, I am not fearful (write that on the calendar, that's ALL God right there).

I am disappointed.

I was supposed to run (the WHOLE thing) my first 5k in years this Saturday...I'll be on the sidelines again, cheering on my running buddy (albeit wearing the most phenomenal alien costume you've ever seen). I had plans this summer to backpack and hike in Arkansas, Colorado, and finally backpack the Grand Canyon this fall. But those are all on hold. It's waiting time.

Wait and see if my knee settles down on it's own. If not, get a cortisone injection (per the Ortho Doc) and then wait some more and see if my knee settles down. Then, when there is no pain, slowly start being active again. And after a few months, I can see how hills go.

I can't help but think how I still feel The Back almost every day, in some random motion, I feel the inflammation that's still there. Will The Knee be the same? What if I can't backpack? I JUST started doing it for goodness sake, I just got a taste.

:Pause:

I got a taste. I got a taste. Oh how many people don't have the opportunity to say that! And oh how many people with my set of diseases and mile long med list can't even dream of saying it...and I got to do it.

I am thankful that I was able to see what backpacking was all about. I am thankful that I get to wear this awesome knee brace in weather that allows for skirts and dresses (because I can't get pants over or under it). I am thankful for this warm weather that will make water activities like kayaking and canoeing doable, since I can sit and do those. I am thankful for a swimming pool I can go to and do laps, even if it is with a float buoy between my knees for awhile.

I have so much to be thankful for that while I am disappointed that my plans haven't panned out like I thought, I am still hopeful. I have seen the way the Lord works during trials and I have seen how they turn out to be so much MORE than I could imagine, so much richer and deeper, how I wouldn't change a thing for what I have learned. He grows me in Him through them, and shows me so much of Himself. He doesn't change. That hope is from Him. So with the hinds feet He has given me, I'll follow Him up this mountain, because it's only as tall as my knee.

Your grace abounds in deepest waters

Your sovereign hand

Will be my guide

Where feet may fail and fear surrounds me

You've never failed and You won't start now

So I will call upon Your name

And keep my eyes above the waves

When oceans rise

My soul will rest in Your embrace

For I am Yours and You are mine

Spirit lead me where my trust is without borders

Let me walk upon the waters

Wherever You would call me

Take me deeper than my feet could ever wander

And my faith will be made stronger

In the presence of my Savior

Sunset on our last night in Big Bend

No Infusion for You!

My rheumatologist was a bit (only a bit) nicer about it than the infamous Soup Nazi above. I sat in the infusion chair two days before I was to leave for Big Bend and backpack about 36 miles. I was starting to feel a bit crummy (joints, feverish, etc) so I was thankful I was getting my infusion before going. I mentioned to my Infusion Nurse that I was on antibiotics for a sinus infection but was halfway through them. She looked at me oddly and asked "but you're going out of town right?" I answered in the affirmative, not worried. I had been on antibiotics two infusions ago and my doctor had been fine with it (the concern about being on antibiotics and getting an infusion, is that the infusion suppresses your immune system pretty drastically, especially at the beginning, and if you still have an infection in your system (i.e. been on the antibiotics for less than half of the duration you are supposed to take them) it can cause the infection to worsen and spread).

Infusion Nurse stated that she would get Rheumo Doc's opinion and went to get him as I settled into my infusion chair. 

Rheumo Doc walked in with a stern look on his face and I cheesy-grinned and batted my eyes (totally true) and told him I was feeling fine (sinus infection -wise) and that I had completed half the round, so I would be hunky-dory-peachy-keen-a-ok to get my infusion (that may have been where I overdid it...).

Rheumo Doc: You're going hiking right?

Me: Yes :cheesy grin:

Rheumo Doc: In the middle of nowhere right?

Me: Yes :cheesy grin:

Rheumo Doc: What if you get sick? The nearest hospital is pretty far away and it's only a small hospital, not well equipped to accommodate the complications that you could have

Me: But you let me get my infusion last time when I was on antibiotics :cheesy grin fades:

Rhemuo Doc: But you weren't going to the middle of nowhere : enter smackdown: :

Rheumo Doc: No infusion for you. You can take extra steroids if you start feeling bad. I just can't take the risk that you'll get sick out there.

Me: Okay, you're my doctor. I submit :attempted smile of understanding:. (there may have been a bit more protesting and him not agreeing before I said that, but we don't need to go into that ;-) ).

Infusion Nurse started rescheduling me for the following week and I was keeping my eyes on the calendar to avoid the sympathetic look I knew she had on her face because I was trying not to cry.

I made it to my car and lost it a bit. I didn't know why I was crying. I was just upset. And that made me think "why am I so upset over this?"

So I sat there thinking and sniffling and started realizing that I was upset because I couldn't control this situation. No amount of manipulation or smiling or assuring had convinced my doctor. I had been counting on getting the infusion to keep me healthy while on my trip. Now I had to tackle this scary thing called backpacking without my security blanket, my "assurance" of good health.

My trust, my feeling of security, was in the infusion, not in the One who provides the infusion.

Ohhhhhhh. :lightbulb moment:

I sat there and started to pray, struggling to say the words because I didn't mean them at first, "Lord, this is not a surprise to You. You are sovereign. You can sustain my health without the infusion. Or you can sustain me if I get sick without my infusion." I repeated this quite a few times over the next few hours as I headed back to work and went about my day.

I asked Him more than once during the day to help my unbelief (Mark 9:24). I spent time praising Him for the blessing I had forgotten, that a medicine existed that helped me and that He allowed that and He allowed my insurance to cover a lot of the cost of it. He was allowing it to help me to where I could even think about going to the middle of nowhere and carrying 37 pounds on my back for miles and miles. 

I texted my friend Irma the news and she replied  (along with some commiserating sympathy), "Another opportunity to see God's providence in your life."

By the time I headed to Bible study that night, the Lord was gracious to give me a peace that no matter how I felt in Big Bend, He would be sustaining me.  I walked into the room where we meet and on the board was the question "How do we understand God's providence?"

Bam. That word, that archaic word, twice within a few hours.

Providence - divine guidance or care

I got a bit giddy and just sat there grinning for a bit. In a matter of a few hours I went from crying tears to not even being concerned about what I had been crying about. 

That's the work of the Lord and how He can change hearts. And how He can show me weak areas in my belief and refine and strengthen them by showing His power in the situation, not mine. I hadn't been aware of how being in control of when I got my infusions helped me to feel better about how I could expect to do health-wise. Now I do. And now I can turn that over to Him.

"God is faithful, by whom you were called into the fellowship of his Son, Jesus Christ our Lord" (1 Cor 1:9)

"Praise the Lord, all nations! Extol him, all peoples! For great is his steadfast love toward us, and the faithfulness of the Lord endures forever. Praise the Lord! (Psalm 117)

Spoiler: The Lord did sustain me in Big Bend, not in exactly the way I thought it would happen, but it did happen and it was awesome. But that's for another post. :)

Don't Cry While You Have Acupuncture Needles In Your Arms and Hands

Backstory - I'm getting acupuncture done once a month in hopes that it will prevent or shorten flares. I had success a couple of months ago when I started flaring and getting acupuncture GREATLY reduced the duration and intensity of the flare. May have been coincidence, but I am all for trying something new - the consistency aspect that is, since I've been getting acupuncture intermittently for several years now.

Main Story-

So I was lying on the table while my Awesome Acupuncturist was doing her needle sticking thing and we were catching up over the last month of activities. We've become friends over the three years I've been going to her and she had just completed her first half-Ironman and I wanted to hear the awesome details of her amazing accomplishment.

She was doing a few extra needles in my arms due to a rough week of nausea and my desire to take as little Zofran as possible (side effect are BLAH). She asked how things were going and I mentioned the fantastic camping trip I went on and the decent hike we took and how it slightly kicked my butt, but not too bad, and I realized I needed to get in better shape for the upcoming Patagonia hike, so I sought the advice and input of a friend at work who is a personal trainer and she gave me homework. Awesome Acupuncturist asked "what was the homework?" and I answered, "the main part is to put a workout schedule together. And that's a really big deal for me because…"

And then I started crying.

When you are laying on your back, with acupuncture needles in your arms and hands and legs and feet (thank God she hadn't put the one in between my eyes yet - that would have HURT!) and you have tears dripping down your face, you can't really wipe them away (moving anything with those needles in sends fiery shocks up and down your limbs)- so that was excellent impetus to control the emotions.

Awesome Acupuncturist just looked at me knowingly (she knows my health history) "you're afraid you won't be able to finish the workouts, aren't you" and I just nodded (giving her a thumbs up was out of the question thanks to Mr. Needle in the base of my thumb and wrist)  She kindly encouraged me and we chatted a bit more, me sniffling as delicately as I could (tears were bad enough, but if my nose had started running!? Gag!), and then she left me for the 45 minutes to rest while the needles did their thing.

I usually take a nap. But this time, this time I spent thinking and praying over my emotional reaction to a spreadsheet.

Fear is so interesting. I feel like I have tackled fear in certain areas and then, before I realize it, it's been lurking in an area I never even thought of.

I just recently (say four-ish months, since going off the Big Bad Liver Killing Med) have been feeling better. I could have attempted to start working out again, but I didn't. I was expecting to get sick again. And I did - a few days here or there, but not prolonged, like the last 4 years have been.

I have about six different workout schedules that I have created over the last four years when I reached an In-Betweens and I never got more than a week or so into them before I would start flaring or something new would pop up. And believe me, these workout schedules are very very gradual - I'm not going out and running 5 miles or swimming 1000 yards or anything like that.

And here I was - afraid. Again. Afraid I would be yet again disappointed by an uncrossed-off workout list. So afraid, that I wasn't even trying anymore.

I thought about my necklace and the verses I have memorized to combat that fear that can well-up so quickly:

"When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?" - Psalm 56:-34

Okay, remember that.

I then thought of another verse I was recently reminded of during my bible study a week ago:

"The Lord will fight for you, and you have only to be silent" Exodus 14:14

(Moses told the Israelites this after they headed out and were facing the Red Sea and Pharaoh's chariot army rapidly approaching from behind.)

For me, this verse means quieting my mental voice, so I can hear His. I can toil and moil over things I cannot control. I need to back off, trust in Him, and let Him work out His plan. I want to fight and argue and add 1000 "buts" to anything that comes my way.

Application:

How does this look for this workout schedule that I sent (I honestly hesitated when I hit "send")? It means I focus on taking one day at a time and actively, by His Grace, seek to trust Him. No matter if I can't do the workout that day or days or weeks and no matter if I can do the workout. Regardless of how many excel spreadsheet merged cells (oh yeah) get grayed out, He is still working His plan. He is still fighting for me. I need to be silent before Him, listening to Him, heeding His word, His direction, His instruction.

And to be clear, when I say I need to be silent, it doesn't mean that I stop praying about it, or bringing my hurts and desires to Him. What I mean is my constant  and sometimes subconscious "what-ifing," my "toiling and moiling" needs to stop, needs to be silent, because I can't hear Him over me. As John says in chapter 3:30 "He must increase and I must decrease."

And the finishing note - I got my gait (i.e. how I run) analyzed on Thursday. I ran, they filmed me and gave me exercises to correct some weak muscles that are causing the knee pain I've been having at some recent run attempts. And, the big news. For the first time in THREE YEARS, I bought new running shoes.

It felt great walking out of that store. By His grace, I will trust in Him to be able to use them, and if He has other plans, by His grace, I will trust in Him to give me peace and contentment in His plans.

His will. Not mine.

Liver Love

The caller ID showed “Rheumo Doc” and I hesitated a few seconds, wondering what they could be calling about…I answered and the nurse informed me that some of my labs needed to be redone, that my liver panel was off and my potassium was ridiculously off, so much so that they were pretty sure the lab had made a mistake. They had already faxed in orders, so first thing the next morning, I was getting another blood draw. My next rheumo doc appointment was a week away. I know what it means to have wonky liver panels and high potassium levels, well, I mean, I know what it means at a very high, very layman’s term level ;-) It would mean that my liver and kidneys are having issues. When lupus organ-interaction begins, the kidneys and liver are usually the first ones to start having issues.

I went into work, thoughts and “what-ifs” started to percolate in my mind.

What if my kidneys are failing? What if my liver is failing? What if both are? Would I have to get a transplant? Would I even be high on the list having SLE? What would be my MELD score? Holy moly, should I still get a dog? Is this why my back has been hurting more during this flare? And on and on.

There’s a verse that has been so important to me over the past few years: take captive every thought.

"We destroy arguments and every lofty opinion raised against the knowledge of God, and take every thought captive to obey Christ" - 2Cor 10:5

I have an overactive imagination, so this verse is a challenge for me. A dear friend of mine once told me (and I quote it ALL the time to myself now): “there’s no grace for our imaginations.”

Grace: grace is when something is given when it is not deserved. For me, an example of God’s grace in my life is how he sustains me through all these health trials, that even though I doubt and stumble and have to think and pray things through so much, I really enjoy my life and am so very blessed, and He allows me to see that. God gives me grace for the events, trials, decisions, etc that He has planned for me. Not for the ones that I decide to make up and think they might be part of my future. I think it’s okay to think about the results of a decision, the different paths that decision could take you on, but not to dwell on it, not to let your emotions get all out of wack because of a situation that you are literally imagining up.

Waiting to get the updated lab results was an exercise in saying no to my imagination, taking captive thoughts, and remembering that His grace sustains me, daily leaving the lab results and whatever could come from them in the Lord’s hands. Trusting Him to provide me with whatever strength, courage, and wisdom I need to tackle whatever the next hurdle could be, health or otherwise.

At my rheumo appointment, my doc and I looked at the results. Thankfully, the potassium levels were just fine, it had definitely been a lab mix up. Wahoo! I’ve got two good functioning kidneys :insert fist pump with happy dance:. My liver, however, was definitely getting wonky. The good (um, outstanding really) news here is that it’s not lupus-related, but actually related to one of the meds I am on. It’s a chemotherapy med and long-term, low-dose use of it can result in liver damage (hence why I get liver panels drawn every 3 months) – I’ve been on this med for 8 years.

Over the past 5 weeks, I've done a rapid tapering of the med. When my doc first told me I had to come off of it, I was nervous because I had been flaring almost steadily since January and going off a med that is probably helping me not have a crazy bad flare was scary to me. We talked other med options if I started having problems, but secretly, I was hoping that I could go off of this and have no effects and be down a med and down an immunosuppressive med to boot.

And praise the Lord, the tapering has gone fine! In fact, I keep forgetting that I am tapering. Not only has the Lord allowed my body to accept the tapering, I am feeling better (my doc thought there was a good chance the liver issues were what was causing the prolonged crummy season), and I have had complete peace - no imagination, no what-ifs. Truly. That's grace folks.

It'll take several months for the med to be completely out of my system and I will continue to just take one day at a time and to remember that His grace is sufficient for me, it's sufficient for me to handle the next flare without this med, and it's sufficient for me to continue to trust Him daily.

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I 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 Cor 12:9-10