Showing posts with label Learnings. Show all posts
Showing posts with label Learnings. Show all posts

Saturday, October 29, 2016

Just an update

Getting some requests for an update so here's a bunch of the latest medical stuff :) - slog through as you desire!

Done with round one of the chemo for my lupus! The infusion two weeks ago went smoothly, no allergic reactions to any of the meds they gave and a huge blessing was having a room on the infusion floor all to myself! Jim teleworked from there and had plenty of room to spread out his stuff. We were there for about 6 hours, so not too bad. And I had soy Pumpkin Spice Latte as a pickup me afterwards. Win!

All hooked up to the port. The steroids have given me a very full face, it's actually called "Moon Face" but we call it my chipmunk cheeks :) )


The post-chemo recovery wasn't horrible. That day and the next I felt very much like I usually do after my previous Benlysta infusions (just tired and a little sick feeling). The following two days were pretty rough with nausea and fatigue and just feeling BLAH. We changed my nausea med and it worked better for me. A good friend of mine who went through cancer this year and last gave me some great tips and saved the day with the suggestion to eat toast. Toast tasted good and I went through a lot of bread in two days :)

Each day I've gotten further from the infusion, I have felt better - and that's exactly what should happen so that's good news. In fact, I've noticed that certain joints that were giving me a lot of problems are almost pain-free now and my fevers haven't been running as high. These are all good signs and we hope the next infusion (in two weeks) will go the same.

We also started to taper me down from the high dose of steroids I have been on for almost 3 months now (!!!) On Monday evening, I did the planned taper dosage and went to bed. When I woke up, my head and neck were shouting at me and my head was SUPER pressure-y, I could barely here out of my left ear. As Jim and I talked over breakfast, I was having a lot of trouble forming sentences in my head and when I did, it hurt.

I feel asleep on the couch and woke up with numb fingers and toes and gums (yup in my mouth). And I felt awful. Jim cam home and per Rhemo Doc's recommendation, we went to the ER. Blood work showed elevated white blood cells, which I shouldn't have because of the chemo, so they started worrying that maybe I had bacterial meningitis (yup, back to that). I ended up having three lumbar punctures to get some spinal fluid. Unfortunately the first attempt didn't go well - I ended up with an epidural! The doc got the numbing medicine in the wrong spot. Let me just tell you it's VERY scary to be lying on your stomach under an x-ray machine with a needle in your back and your entire bottom half goes numb and and the docs and nurses all start working fast and yelling things and such. I regained feeling within an hour, but still. I am so not a fan of lumbar punctures.

Due to the trauma from the first puncture, the second puncture wasn't good (there was some blood in my spinal fluid). So they admitted me for observation.

The next day, they did a slew of tests because the blood in the spinal fluid. (it can indicate some serious things that need to be checked pretty quickly). I had a third lumbar puncture and the blood had cleared enough to allow then to use it for their tests. I also did four hours of MRIs and CTs mapping my brain and spine. That was one of the most challenging things I have done.  My back really hurt from all the punctures and I had to lie flat on it and hold all my muscles as still as I could (hard because I have tremors in my limbs right now). It was hard. And I cried. The nurses were SO incredibly kind and supportive and empathic (it was a really long scan for them too) and we got through it. And Jim brought me dairy-free frozen yogurt as my reward for getting through it :).

The good news is that all the scans were normal enough for them to comfortable with sending me home since I was stable - even though we still don't know why my head pain is increasing or where the numb extremities are coming from. We ruled out some stuff I was worried about, stuff that could cause permeant brain damage and such.

Eating Tex-Mex to celebrate our four month anniversary - I know it's only four months, but it's a happy moment to remember and celebrate  :-)

It's very humbling and scary to realize that you aren't thinking or processing like normal. I can feel my slowness and hear my mistakes and I know they are mistakes but I still make them. I am glad that my brain and spine look okay and that hopefully once we get the inflammation in my head to go down, all my cognitive thinking stuff and motor skills will return to normal.

I am glad to be home recovering from the stay - I'm pretty banged up and shaking by all the tests so I've been doing a lot of icing and stretching of those muscles.

The nurses at St. John's Methodist were outstanding. I am so thankful for those that choose to go into the nursing profession and show genuine empathy and care for their patients. It makes a huge difference when you're lying in a hospital bed, scared, and have no idea what's going on to have that comforting hand to hold or explanation given or just an encouraging smile, so thank you to all you nurses!

I have an appointment with Rheumo Doc on Monday - again thankful for the timing of all of this - I already had that appointment schedule before all the hospital stuff this week. Thank you Lord!

So until then, I think I've regressed about a month for what I am able to do around the house since the head/neck pain is pretty intense. I feel like every hour I have to tell myself to choose joy (James 1:2). My friend visited me yesterday and I really wanted to spend some quality time with her and couldn't due to the pain levels. As I lay there on icepacks, I realized, 1) I've made more progress since my initial hospital stay than I realized (sometimes we can't see something until it's taken away and then we see what we had) and 2) I could choose to be joyful that I at least got to see my friend for a bit and hear about the awesome things going on in her life.

I am thankful that God is allowing me to choose joy and to be thankful when it's hard. I know He is helping me do that because I have so many moments where I just want to be done, I am definitely not getting through this on my strength, but His and the amazing people He has put in my life, like my husband. This has been a hard journey and it's not over. But I also know that He will continue to sustain me:

"But you oh Lord, are a shield around me, My glory,  and the lifter of my head." Psalm 3:3

Saturday, October 15, 2016

Rehashing My David Moment

I'm not going to lie - the past couple of weeks have been tough. I had my chest port placed and that all went very smoothly and it's been healing nicely. In fact, I got to unexpectedly use it for the first time yesterday.

Over the past two weeks, my lupus joint pain has really flared up and the meningitis symptoms of a full head/stiff neck have increased. I wake up around 1am with severe joint pain and have to massage/walk it off over several hours. When we discovered that the first available slot for my first chemo treatment wasn't until October 17th, my face crumbled. "Two more weeks of this? I can't do it - things are getting worse, not better" was my inner mental dialogue. I was told to call every morning and see if there had been cancellations. I requested being moved to a different location for the treatment but my Rheumo Doc is pretty adamant about location due to their expertise and my complicated history. And the cancellations never happened.

This past Thursday evening was the worst it has been and it's because I took a sleep aid and it kept me asleep far past when I should have been up rubbing my joints. After my morning nap, my knees and ankles were so swollen I couldn't walk and my legs were bright red. I called Rehumo Doc, left a message, and then settled in to visit with a sweet dear friend whom I hadn't seen in awhile. Rheumo Doc called back quickly and told me to come in for steroids - he didn't want me going into the weekend like this and we didn't want anything to mess up my treatment on Monday.

My amazing friend, who was teleworking by the way, drove me all the way to the med center, waited for my infusion, and then brought me home. And she lives up in town so this was no short commute for her. I am amazed at the help God provides just when we need it. And I greedily soaked up an extra hour or so of conversation with my friend and greatly had my spirits lifted.

My first port access went great - so nice to only be poked once and it hurt less than an IV. I am glad that milestone is out of the way and one less thing I have to think about for Monday. The infusion nurse was kind and answered a lot of my questions about port care and such and I feel Jim and I are better equipped to deal with it and anything that might come up on Monday. Such a blessing. Already the steroids have helped with the joint pain...not with the sleeping though ;-) but I will take the breather, no complaints here.

Through the ups and downs of the past two weeks and the waiting, I was reminded how God likes to be remembered. The Old Testament and New Testament are filled with re-telling of all that He has done for His people. It's re-tell worthy folks, that's for sure. He is mighty and powerful. And perfect in His timing. Despite our efforts to get me into treatment sooner, it has been very clear that the answer is no, and while I don't understand that and have struggled with "but haven't I hurt enough yet?" I have been so sweetly reminded by several things.

This article by Joni Eareckson Tada has been a balm to my spirit and emotions. We aren't promised a charmed and pain free life, Christian or no. There is going to be trouble. And we are to walk joyfully in it, because, for me, my hope isn't in this world, but in Jesus Christ. And we don't walk it alone, He and the amazing support community He has provided are with us every step of the way.

And then I ran across an old post from 2012, where I was really struggling with the day to day stomach pain and wondering when it would end. I want to be the woman in this post, the one who was finding joy and hope even in the waiting. I look forward to Monday - it's a big day - it's when I feel like I start my offensive against lupus and the meningitis. It will take 7-10 days for us to notice if the treatment might be helping. I am praying for miracle of shorter time. BUT even if we don't see the results we hope for, I want to choose joy. 

Please join us in praying for a miracle, to see a difference even in this first treatment, to trust Him no matter the results, and to choose to be joyful when it's hard.

You are an amazing village of supports and prayers and positive thought senders and helpers - even in the darkest moments, knowing how loved we are - we see the Lord through that and can remind ourselves of His faithfulness.

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing" ESV- James 1:2-4

My David Moment - repost from 2012

It's been a rough past five or six days pain-wise and sleep-wise and I've found myself getting pretty discouraged. My right hand recently broke out with the blister/ulcers that I usually get only when it gets cold outside (one of the aspects of the Raynaud's Syndrome that I have). It made me crinkle my brow, because I wouldn't think that would happen with the new meds in my system - I know I am not supposed to really start seeing results for another couple of months, but I didn't think that I would still be getting disease things - I was hoping everything would just freeze where it is at. And my abdomen pain has been pretty brutal at times and on top of all that, I am having a lot of trouble sleeping - I just can't sleep through the night and wake up and can stay up for hours before falling back asleep. It's been very wearing.

I found myself at caregroup last night not wanting to ask for prayer because I am so TIRED of praying for my health and tired of disappointing people when they ask me expectantly "so, are you feeling better?" and I have to say no. I know that probably sounds a little crazy, but I'm just being honest here. My sweet group had great encouraging things to say and did pray for me when I finally admitted that I didn't want to ask for prayer...and while I appreciated their prayers and concern, I still came home hurting, tired, and discouraged.

I've been studying the book of Hebrews, but I wasn't feeling it this morning. I journaled a bit and asked God to remind me that I do find joy in what He is doing through all of this and that I want to share that joy with others. I was feeling so weary. So I looked up verses on "weary".

I read Hebrews 12:3 but it wasn't what I was looking for...I went on to the next verse that had "weary" in it, Psalm 69:3- "I am weary with my crying out; my throat is parched. My eyes grow dim with waiting for my God." Um. WOW. What's this? Did I write this? Nope, David did...I flipped the page and started at the beginning of the psalm. Here's how God used this psalm to mightily encourage me today:

So you saw verse 3 (crying out, eyes growing dim)...and then nine verses later, David writes this:
"But as for me, my prayer is to you, O Lord. At an acceptable time, O God, in the abundance of your steadfast love answer me in your saving faithfulness" (Psalm 69:12). 

Oh Lord, YES! You know that I know this is all part of Your plan and that it is for my good and your Glory. But please Lord, in your timing, end this season for me.

And then David writes:

"I am afflicted and in pain; let your salvation, O God, set me on high" (Psalm 69:29)


Oh so true, and yes, Lord, I would really like for this disease to settle, to go away completely.

"I will praise the name of God with a song; I will magnify him with thanksgiving. This will please the Lord more than an ox or a bull with horns and hoofs. When the humble see it they will be glad; you who seek God let your hearts revive. For the Lord hears the needy and does not despise his own people who are prisoners" (Psalm 69: 30-33)


Now, the study portion of my bible says that this is what David (who is writing this psalm with the perspective that we all should have in trials) will do if he is delivered from his trial. I agree with that, yet, I want to praise the Lord even if this trial doesn't end, because He never ceases to amaze me with how He blesses me and gives me grace - true, it may not be according to my plan, but it is always so much sweeter and greater than what I have planned. And I hope when I share how He has blessed me and given me grace, that it encourages those around me, that they will see Him working, and not me. And this is EXACTLY what David is saying. Whoa. Big whoa.

And finally, David writes:

"For God will save Zion and build up the cities of Judah, and people shall dwell there and possess it; the offspring of his servants shall inherit it and those who love his name shall dwell in it." (Psalm 69:34-36)


Ah yes Lord, my hope is not in this world, but in Heaven. One day, I WILL have perfect health. That day when I am with you for all eternity. What amazing hope!

I cannot tell you how encouraged I felt after going through this psalm and writing down those verses. My Father cares for me, He encourages me when I am discouraged and points me back to Him.

And that, was my David moment. ::grin::


Friday, September 23, 2016

Abide - the Forward Plan

To abide:

1. To wait for
2. To endure without yielding
3. To bear patiently 
4. To accept without objection


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

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

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

My immune system needs a reset.

The Forward Plan - Chest port and Chemo

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

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

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

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

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

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

I am just a branch on the vine.

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

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


"Abide With Me" 
(Audrey Assad version)
Abide with me, fast falls the eventide
The darkness deepens; Lord, with me abide
When other helpers fail and comforts flee
Help of the helpless, oh, abide with me

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

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

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




Tuesday, September 13, 2016

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.


Wednesday, September 7, 2016

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.

Monday, June 20, 2016

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.



Saturday, May 7, 2016

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.





Sunday, August 30, 2015

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. 

Tuesday, March 31, 2015

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