Looking for New Mercies

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Lead In...

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

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

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

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

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

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

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

Not mine, but Yours

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

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

I might not feel my best.

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

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

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

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

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

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

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

Even In This: Thinking about Marley’s Chains

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

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

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

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

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

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

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

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

                                                                        2 Corinthians 12: 7b-10

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

1) "To keep me from becoming conceited"

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

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

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

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

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

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

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

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

Proposal Details

Since so many of you have asked...here are the details...with some guest writing by Jim as well :)

Jim's Side:

A few weeks before Valentine's day, I told Melissa I was going for a long run on a Saturday morning with my friend Joseph, who was training for a marathon. Thankfully, she didn't ask where we would be going for this long run, because we were going to Brazos Bend State Park to scout potential locations for the proposal to take place. Melissa and I had tried going to Brazos Bend last year, but the park had been closed due to heavy flood damage. This time was going to be much different. Joseph had casually asked if I had any Valentine's Day plans, and I let him know that I had him and his wife Lauren in mind for helping me carry out my plans.

The spot I picked was a dock on a small lake, not far from the observatory, within the park. I knew we could watch the sunset next the observatory and then take a short walk before she would stumble onto my surprise for her.

My plan was for our walk around the lake to take us right past the dock, just after sunset. Seemingly out of nowhere, the dock and the table would be romantically lit and have a table for two ready for us to walk up and have dinner.

That afternoon, we tried looking for geocaches at the park for the first time, but were unsuccessful in finding any. We did have fun just hiking around the park, climbing trees, and crawling through brush off the trail. And a little bit before sunset (which research told me would happen at 6:10pm) we sat on a bench by the observatory, enjoying the peace and the sounds of birds overhead.

While we were out, I'd left instructions for Joseph to send me texts updating their status - not that I'd show myself getting distracted by my phone (how unromantic!), but that I could feel it vibrate in my pocket - one buzz for all clear, two for potential issues, and three for big problems. I got the first text at 4:00 - the dock was clear. But signal in Brazos Bend is a bit questionable. At 5:00, I got no update that they were setting up, nor at 6:00 that things were ready. At 6:05, my phone battery ran out, and so I would not receive the last text scheduled for 6:10, right at sunset, that we could walk over to the table.

So I asked Melissa to keep an eye on the clock. And at precisely 6:10, while she was still enjoying the sky and the view, I gave the word that we needed to move out. She didn't know it's because I worried our food would be getting cold, and that someone walking by might take an interest in the scene, while nobody was at the table. I prayed that Joseph and Lauren were on schedule.

So we started walking, at first in the direction in the car, until we got to a fork in the road, and I said we'd take the long way around the lake. And five minutes later, as we came around the corner where we'd be able to see the dock, I saw Joseph and Lauren leaving the dock, taking with them the empty bags. Melissa saw them too, and turned towards me, full of questions. And in that turn, she also saw the dock and the table, lit under the dusky sky. Joseph and Lauren went above and beyond my plans with the decorating, adding touches of flowers and petals. And so, as they cleared the area, we sat down to dinner.

Melissa's Side:

Jim had told me a few weeks before Valentine's that he had the day reserved. I wasn't surprised by that because he put together a really sweet dinner surprise on our first Valentine's together the year before (our 4th date :) ). The day before, he emailed me a pack list. It was hugely varied - from a star chart, head lamp, colored pencils to dancing shoes and a coat that I would consider "cute and nice." I was thinking we were doing something outside and then going somewhere for dinner. 

After church we headed out and after a little bit (Jim was driving) I realized we were headed to Brazos Bend State Park. I pulled out my Texas State Park pass. He just grinned and played all innocent. We parked and he pulled out his GINORMOUS backpacking backpack...I was starting to think that maybe we would eat in the park. And then he pulled out his GPS watch, a compass, and a list of geocaching sites. We had both mentioned that activity before but had never tried it. So we went on the treasure hunt. We climbed through a lot of bushes and trees and found all of the coordinates we set out to find, but no actual geocache. 

We headed back to the Observatory where Jim said we would watch the sunset (it did flash through my mind VERY quickly, "is he going to propose!?" but I quickly squashed it because I had been working really hard not to try and guess when he would since I really wanted to be surprised. We sat at the observatory and chatted and talked about the past year together. 

Sunset was at 6:10pm (it didn't surprise me that he knew that, he always looks up sunrise and sunset times when we are outdoors). A little before 6pm, he was getting his phone out to take a picture (or so I thought) and he worriedly said "oh no, my phone died." I was like, no big deal, I have mine to take pictures. And then he proceeded to ask me what time it was about 4 times in he next 10 minutes. I was thinking "why is he being so weird about the time?". Right when it hit 6:10pm, he said "okay, let's go." I kinda just stood there for a few seconds as I watched him walk away thinking "but the sun JUST set, the colors are still pretty, why are we going?" but I figured that he wanted to get dinner started before it got too dark (even though I had brought my headlamp ;-) ).

Instead of walking back to the parking lot, Jim turned me onto a trail and said we were going the long way around. We walked and chatted (or I chatted...) and then I saw what looked to be our friends Lauren and Joseph ahead. I turned to Jim to ask if he saw them and that's when I saw the table and chairs and lights and flowers. I started crying. I couldn't believe someone would do that for me! I was so blessed by his attention to detail and thoughtfulness. He had cooked the dinner the night before and our friends had reheated it. It was all gluten and dairy free! 

We chatted and even though I was still a little weepy, I realized this was a nice dinner and nothing more. And I was totally okay with that and just enjoying the moment. AND THEN he turned the conversation serious by mentioned the book we had been going through "101 Questions to Ask Before You Get Engaged" and asked me how God had grown me since we started dating. So I shared, and then he shared, and then he wrapped up by saying "I want to be your husband." And he got down on one knee (I was totally crying at this point) and asked me to marry him. And then I ugly cried into his shoulder...and I think I said yes then, but neither of us can remember! A bit later, I gasped and asked "Did I say yes? because YES!" - he laughed and said he had taken my tears as a yes :).

After some emergency battery charging at the car and some time for me to fix my twig-filled and humidty-frizzy hair and put on my "cute and nice" coat, our friends came back and took pictures.

Perfect, perfect, perfect proposal! I am so thankful that God allowed me to trust Him and be surprised and for all the time and thought Jim put into planning the whole day.

"I wait for the Lord, my soul waits, and in His word I hope." Psalm 130:5

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. 

White Water Rafting in Colorado!

White water rafting has been on my bucket list since I was a teenager and I finally got to go last weekend! My knee has been healing nicely and it did well on the raft (I sat on the left side, since it's my right knee with the issues and it wouldn't be stressed as much on that side of the boat).

I LOVE WHITE WATER RAFTING!!!! 

Matt and Lori, Jim and I, and another couple (who had the GoPro that recorded the video below that they so graciously sent to us!) paddled the Arkansas River, Numbers section, Class 4+ in Buena Vista, CO. The snowmelt was huge this year so it was running fast (normally a 2.5 hr trip only took us a little over an hour). I didn't buy the CD with pictures, but I was grinning in every single one of them!

SO MUCH FUN!

Lori and I were the smallest and so the guide put us in the back because he needed the cg further back in the boat to better set up for the rapids, so we hit the biggest rapids back there but Lori wisely requested we move up to the front at the end and we caught some Class 2 action there.

The knee did great, my fingers and toes didn't turn blue from the cold water, and I had some fantastic (really, it was great!) muscle soreness the next day to prove I had paddled hard :). Also, no one fell out of the boat!