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'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. 

Sunday, July 12, 2015

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).


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!


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!

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.


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. :)

Sunday, February 8, 2015

Treasures in Darkness in the Green Pastures

“A black night seems to make the moon brighter. Purple irises brighten yellow daffodils. And a dark gray Kansas sky makes the wheat look truly golden. So it is with us. It seems that God best displays the brilliance of His grace against the backdrop of our darkest and even blackest moments."—Joni Eareckson Tada.

A couple of weeks ago, one of the dads at my church approached me and said "I have to ask, I've been seeing all of your pictures of you being outdoors and hiking and active, did you find a miracle drug that's caused all of this?" I grinned and told him, "Nope, I am still doped up to my eyeballs, but the Lord is allowing the current combinations of meds to stabilize my symptoms and my body isn't fighting back as much as it was."

This morning, after service, he and his wife approached me and he shared that Lord wanted me to know that "He is leading you through green pastures right now, this is part of His goodness for you". He opened up Psalm 23 and read from it, and shared that he knows the love of a father for a daughter (he has 3) and he knows that God loves me even more. Of course I started crying then (both of them were pretty teary too) and thanked them; it was affirmation of something that I felt the Lord has been trying to convince me of for the past several weeks.

I had brunch with a friend yesterday, and she mentioned how excited and happy she was to see me active and able to plan some of the trips I am planning. I confessed to her that I was excited too, but every single day I had to battle fear that this respite, that this period of feeling better, was going to be taken away. 

One of the biggest treasures that I have discovered in my periods of darkness are the lessons of trusting in Him, despite everything. Those lessons were painful and scary and hard, probably because of my stubbornness and resistance. But by His grace, I have grown to trust Him more and more when faced with challenges.

Never did I think that I would struggle with trusting Him when things are going well. How funny it is to even type that! 

But it's true. I fear this "easy" season because I fear it being taken away. I can trust Him to carry me through hardship and pain. But can I trust Him to carry me through green pastures and still waters? That makes me sad to realize that, because it prevents me from truly enjoying this time of increased health and energy. I am preparing myself, girding myself up for when (if!) this time changes, when symptoms increase and when I'm confined to a house and my bed again. I'm not trusting in His grace to sustain me in that transition and instead depending on myself - this useless and needless future preparation is diminishing my ability to be joyful and fully celebrate this good season. Oh how backwards and twisted is that!?

I opened up Psalm 23 when I got home today and the first verse says this:

"The Lord is my shepherd, I shall not want. He makes me lie down in green pastures"

I started laughing. "He makes me…" not "He allows" not "He blesses", but He makes. He knows how stubborn I am, He knows my heart and my fears, and He knows that what I would have thought would have been easy, is not for me. So, He brings people into my life to remind me of His goodness, of His action. He allows my heart and mind to connect the dots, and then sit here and share this revelation with you all…He is making me lie down in His green pastures, despite my protests and reservations.

Oh the goodness of my God! By His grace, may I stop questioning, stop feeling guilty for enjoying being well instead of preparing to feel bad. Just stop. And bask in the glory of Him. Of this current goodness in my life. 

One thing I have come to know of my God - He is faithful. He didn't just show me all of this to point out what I was doing and leave me in the same place. I know He is going to grow me and teach me to trust Him in both the peaks and the valleys. 

"Oh the depths of the wisdom and knowledge of God! How unsearchable are his judgements and how inscrutable his ways!" - Romans 11:33

Sunday, February 1, 2015

Ice, Ice, Baby...

Yup, I went there. Because it perfectly describes the day we spent out at the Perito Moreno Glacier in Los Glaciares National Park. It was one of those days that just kept getting better and better with each introduction to what we were doing next.
First look at the glacier…and I thought this was cool

Whoa, even cooler! The Perito Moreno glacier is HUGE. It is one of the three glaciers in Patagonia that is still growing. It's 3 miles wide and rises about 240 feet above the water you see (Lake Argentina).

The glacial lakes created from the melting glacier are so blueish green due to the amount of copper (and other minerals) in the water.

You have a good view here of the rocks and dirt the glacier has picked up as it moves

Crampon time! Crampons are the metal spikes being tied to my friend Erin's show here. They are absolutely required to get a good foothold in the hills of ice we were climbing.

Glacier climbing! (done sans pickax, just a prop to make it look even cooler ;-))

Our guide showing us where NOT to step

Looks like these folks are standing on water, doesn't it? Slightly unnerving.

Our guide mentioned that they have to change up the trail/hike they do about twice a week because the face of the glacier changes that quickly. What was once safe, is now dangerous.

Nothing like a glacier inspired kick line to cap off an amazing hike!

Thursday, January 22, 2015

Torres del Paine - my favorite Patagonian hike

I figured I'd start telling the story of my Patagonia adventure with the hike that I liked the most and recap the others in another post later. I also plan to post a detailed gear list/review/make betters to help someone in the future who googles "what the heck am I supposed to pack for Patagonia?" -(I may have been that person 6 months ago and was disappointed by the search results :)).

My favorite hike was in Torres del Paine National Park, Chile.

This was my first view of the towers (lighter gray peaks in the middle). This was taken the day before the hike.

There is a very popular backpacking trail called the "W" (the trail makes a W-ish shape along the base of Torres del Paine). It take 4-5 days to hike the W, and 10-12 days to do the circuit (the W plus going around the back of the towers). Our hike to the base of Torres del Paine was one part of the W, so I am happy to say that I have hiked part of it (and I may have had backpack envy of those doing the full thing, watching these super serious (and also very grungy and tired looking) folks walking around.).

We got to the trailhead at about 10am. The sun was shining and the skies were clear. A huge thrill because the day before had been cold, overcast, and raining. Of course, being I was in Patagonia, my pack still held ALL the layers I would need (we were told that you can experience all four seasons in one day in Patagonia…and we did, multiple times). Out of curiosity, I weighed my pack when I got home - I carried around 13lbs on each of the hikes. Not bad. Water is heavy and I carried 2.5L plus a water bottle.

This leg of the W started out fairly benign for the first mile. And then, bam, uphill city. For over an hour. It was warm and I had too many layers on (layers that were, um, not easy to shed since they were under my pants) and I started overheating on the uphill (like, to the point where I had goosebumps - I hadn't experienced that since my triathlon days). One of the gals was having the same issue and we realized that the pace was just too fast. So we slowed down and that made all the difference! I was super happy to hit the downhill into the refugio (a hostel that backpackers can reserve space at that has showers and bathrooms)…and tried really hard not to think of that downhill being an uphill on the way back (it was an out and back trail).
Ah, downhill, how I love thee (see the trail?)

Smile! You survived that uphill!

My view at the refugio as I crammed a bar and some beef jerky, two hours in and I was already starving!)
After a short rest that was incredibly refreshing, we hit the trail and started through the forest. Our group was fairly quiet. It was chilly now, so the sound of sniffling noses and the clacking of trekking poles was the background music through a dense and beautiful forest. It was at this point, excited that I had been able to muscle through, physically and mentally, a tough beginning, that reality of what I was doing started to hit me. I was in Chile. In Patagonia. On a hike. A hard hike. And I felt good!

My sniffling got a bit louder. I was absolutely overcome with thankfulness that He would allow me this experience. I reflected on how scared and fearful I had been just two years earlier, in so much pain and so scared of what would be in my future. Never did I imagine that God would give me this opportunity.  This was just too big. Too much. Apparently my sniffling had reached such a degree that my friend turned around (we were a bit behind the others) and saw my face and asked if I was okay. And then I totally ugly-cried sob-bawled out "I just can't believe I am here. I was so sick. God is so good to me to allow me to do this." Her response was "well now I am going to cry too!"

It was a good part of that trail, the forest. :)

Coming out of the forest and starting the final uphill to the towers.

I received some wise advice before this hike: "If the uphill starts getting mean, just take a second to pick your head up and look around you again." This was that second…or two ;-). A lovely view of the "awesome" skree field we got to pick our way through and try and avoid being blown over the side.

I was right behind another group and we all cleared the top at the same time and all said the same thing "WOW!"

Group shot - the gal on the left joined our group at the start. Her name is Vivian, she's from Holland, and she was hiking the W in a couple of days BY HERSELF.  It's fun making friends on the trail!

What's a hike without the return of the hiker-surfer-ninja pose?
After hunkering down behind some boulders to shield us from the winds as we ate lunch, we did some photo ops and then headed back down, trying to keep ahead of the storm that was blowing in. The downhill from the base was intense, a lot of focus was required to make sure I had sure footing (because there may or may not have been an almost sheer drop off on one side for a bit…).

By the time we reached the refugio again, the rain layers had been pulled out and we were a quiet bunch again, being tired and starting to get low on water (I drank 3L of water on that hike!). 

Can you see the rainbow? This was during the last 2 miles of the hike. A wonderful reminder of God's faithfulness.
We reached the van that had brought us at about 6:30pm. It was a tired, hungry, and sore group of folks that piled into the van. I can only speak for myself, but besides being tired, hungry, and sore, I felt content, happy, aware of Him, and very much alive. 

It was a good hike.