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. :)