Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts

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

Sunday, March 22, 2015

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. :)












Saturday, November 1, 2014

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.


Saturday, June 7, 2014

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




Sunday, April 27, 2014

New every morning


I sat on the now concrete floor of the closet and stared at my hands. "Hmm, maybe this isn't the best idea"

I've been wanting to rip out the carpet in my bedroom and replace it with the wood-look tile (cats+potential dog+carpet=blah). I also have a distinct loathing for the late 80's style kitchen tile and want to get it replaced.

I've gotten two quotes and both came in over what I was hoping to spend (my hopes were unrealistic by the way, one of the companies quotes is very fair). I could either pay this company to do one room and I just save for the other, OR I could do it myself and get both rooms done, plus have a lot leftover for other house projects. Felt like a no-brainer decision to me.

So I moved the desk and other furnishings from my closet-turned-office and ripped up the carpet and pad and then started to work on the tack strips which are actually nailed into the concrete slab (seriously!? That seems a bit overkill to me…). About 45 minutes in, I had to stop because my fingers and hands wouldn't work any more. My finger joints had swelled and my hands from the first knuckle up were bright red and throbbing. I have a bunch of ulcers on my right hand right now too and they were pretty irritated from all the moving/pulling of stuff.

I sat on the concrete floor and got VERY frustrated. I like to work with my hands. I like working on my home and creating something new. And, I like being able to save money. It's so easy for other people to do depo work in their homes, to tile, or garden, etc. It's easy for normal people, I kept thinking to myself. And my frustration and bitterness over my disease and season of life grew.

It took a couple of hours, but after some internal fuming, I could see how God was showing me my stubborn rebelliousness to prove to myself and others that despite some physical limitations, I could still do this. My pride was being stepped on with the swollen-hand incident. I wasn't quite ready to give it up but I did start to think, "maybe I should just pay someone to do the room."

Needless to say, I went to bed still mad and upset and grumbling.

The next morning I woke and headed to my friends house to watch their kiddo. While he took a long nap, I pulled out my Bible and journal and started reading.

Journaling's a challenge right now due to some ulcers in the spot where I hold the pen.

I'm reading in John right now and I read the story of how Jesus asked the woman at the well to draw water. What he said to her really struck home that morning:

"Jesus answered her, "if you knew the gift of God, and who it is that is saying to you, 'Give me a drink,' you would have asked him, and he would have given you living water" - John 4:10

I was suddenly struck by how little I had been filling myself with living water (Him) and instead depending on myself and filling myself with other stuff (not bad stuff, just stuff that wasn't Him). Living water quenches my thirst, other stuff doesn't.

As I thought on this, I also realized that I had woken up less frustrated and annoyed with the whole carpet-removal-swollen-hand incident. His mercies are really new every morning…all it took was going to bed and waking up and my attitude had been complete adjusted! What a mercy!

"The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning; great is your faithfulness. 'The Lord is my portion' says my soul, 'therefore I will hope in Him'" - Lamentations 3:22-24

I'm not always there with finding God to be my portion, but the more I am in His word (the Bible) and the more I am aware of him and seeking to please Him, the more easily I can say and know that He is my portion.

I still haven't 100% decided what to do about the floors, but after some rough nights with my joints and my fevers returning, having someone else do the depo/tiling is probably the wiser decision. It often surprises me the things I hold on to, that I can be stubborn about. They are usually things that I think I can control. Time and time again, He reminds me that He's in control, not me, and that it is going to look different, but also be better for me. I'm thankful for a gracious Father who never gives up on teaching me and showing me my stubbornness, so that He can refine and correct it, and grow me to be more like Him.

As an ending side note, I have an awesome steroid cream for those ulcers, but it's pretty much the greasiest-slowest-to-absorb cream in the world. I'm quite proud of the solution I came up with last night to allow the cream to absorb while I sleep (I've tried regular gloves but it soaks in more to the material than my hands). So many uses for ziploc bags :)


Saturday, March 29, 2014

The In-Betweens


A friend of mine who was diagnosed with breast cancer at the age of 32 (currently cancer-free, wahoo!) posted an article this week and I keep thinking about it. The article resonated with me in so many ways and I thought I would share some of that with you all.

I'm at the tail-end of a three-month long lupus flare. Three months of excessive fatigue, constant fevers, and pain wherever there is connective tissue. A round of IV steroids at the end of February helped settle the joint pain and inflammation. A series of acupuncture appointments this month have broken the fever cycle (officially fever-free for a whole week!). And my energy is returning! Praise the Lord!

The last three months and the article got me thinking about the periods of time between flares/onsets of new symptoms, the In-Betweens, as I've decided to call them.

For me, the In-Betweens are characterized by a renewal to engage with my friends and family, to throw off the isolation that a flare can bring. To get caught up on life. Projects, outings, working out. The In-Betweens strive to be normal, to be light-hearted, able to chat about less heavy issues than sickness, meds, IVs, doctors, insurance companies that give you the run-around, etc. The In-Betweens are a time to thank the people that helped me out, that brought meals to my house because I was too tired to drive to the grocery store, people who offered to come clean my house because just looking at the vacuum cleaner could bring on tears of discouragement with the realization that pushing the vacuum just hurt too much.

The In-Betweens are a fragile walk between embracing wellness and fear of the next flare. That swollen joint one morning "is this a flare?" The elevated temperature one evening "is this a flare?" The In-Betweens are an exercise in wisdom: what project do I start that I know I can finish quickly in case I start flaring again? Is it worth it to try and sign up for a race, not knowing if I will be able to complete the training? Is it okay to hang out with my friends so late, with an early morning the next day, will that trigger a flare? Is it okay to eat that- it might cause my stomach pain to worsen, would that stress trigger a flare?

The In-Betweens are a time of feeling older beyond my years, of fighting against feeling like a "Debbie Downer" because so much of recent activity is characterized by things most people are uncomfortable with talking about, because people are "fixers" and this stuff isn't fixable. And that recent activity gives me a different perspective on daily things - an equanimity when it comes to potential drama (mostly ;-) ), an easy weeding out of the battles to be fought (again, mostly :) ).  It can be a struggle at times to relate to people, especially right after a flare.

The article talks about how young people with cancer can feel cheated. Chronic illness is very different from cancer, but I think there are similarities when it comes to emotional struggles and some of the life-changes that have to be made to accommodate something you don't want to accommodate. I was so encouraged to hear about the support groups that exist for young people with cancer. In talking with my friend, I found out that she is in training to become a mentor to other young women with cancer. It made me start thinking about if there are support groups for young people with chronic illness. Yes, there is a lupus support group here locally (I get the emails), but there is a difference of being ill when young and being ill in your 50s and 60s, and this article discusses this very well. And, I love to see people reaching out to one another in their pain and suffering, helping others deal with their suffering, to help lighten the load.

"who (God) comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God" - 2 Corinthians 1:4

I pray that the Lord will use my sharing of The In-Betweens to help those who are walking with someone who is suffering, or someone who is suffering. I pray that I will live out 2 Corinthians 1:4.