Category Archives: Health

Follow-Up Body Update

Well, we’ve been back for a few days now from our second trip up to Mayo.  This trip really sapped my energy, so sorry this didn’t get put together as quickly as last time!  For those who enjoyed the post from the previous trip, hopefully this is worth the wait.

Day one went much better than last time.  There were no detours on the drive to Rochester, I was able to eat food with flavor when I wanted (no fasting required), and we opted for a handicapped suite at the hotel.  No more stuck-in-the-hall or stuck-in-the-bathroom moments for me this time around!  Also, our daughter J went with us, which was definitely a blessing.  Besides her help with carrying all my junk I need for sleeping and getting around between the car and hotel, she and I had lots of fun keeping things silly… kind of like the X-ray picture I chose for this post above. :)  More on the silliness later.

Before jumping to day two, we did have one minor adventure at the hotel.  T and J headed down to try out the hot tub while I stayed in the room to veg a bit in front of the TV.  I didn’t make it through one round of channel-flipping before they were back.  They were laughing and cringing as they informed me the maximum capacity of the tub was two, there was a sign with rules that you must not use it alone (therefore also a minimum capacity of two), and that there were some unidentifiable substances floating around in it.  They then went on to figure out who got to sanitize in the shower first.

Day two was initially expected to be the only day at the clinic, and that afternoon we would head home.  Our itinerary looked about like this:

  • 8am – Rheumatology
  • 10am – Orthopedics
  • 12pm – Echocardiogram
  • 2pm – follow-up with General Internal Medicine
  • 3pm – random immunization (stupid tetanus shot)

Like last time, “the plan” completely changed with the first appointment.  After some fun examination and discussion with the young rheumatology resident, who originally went to school to be an avionics engineer like T and me, the main doc came in and proceeded to give us a diagnosis.  He cut to the chase right away with: “I’m confident you have ankylosing spondylitis.”  (Stay here though… you can check out the Wikipedia link later. ;)  T likes to think of it as “ankylosaurus spondiferous” or better yet “that dino disease.”  Does anyone else remember ankylosaurus from school?  That dude was awesome… he could take on a T-rex!

ankylosaurus_vs_trex

The doctor’s language when informing us implied this was an easy diagnosis to make and it needs to start being treated with meds… but only after doing a bunch more testing, which he immediately scheduled.  Suddenly we were looking at another day half-full of testing and a follow-up appointment a week later.  But forget the talk about meds and appointments.  T and I were just sitting there stunned.  Why?  The short story is we’ve questioned this disease various times over the years, and it has been ruled out due to nothing showing up in my spine or hips, which is primarily what it affects.  My issues are in all the other joints… so if correct, this seemed to progress completely backwards.  We bring this up with the doc, and he spends a fair amount of time explaining his reasoning, pointing to my latest X-rays which show for the first time that my spine has the same stuff going on.  My sacral joint is even completely fused.  There’s supposed to be a bunch of back pain associated with this as well and there hasn’t been until just this past year.  You might say the timing of this is… “interesting.”  More on that later… we have several appointments and tests to deal with.

Oh wait, before moving on… right before we left rheumatology, he nonchalantly dropped a bit of a hand grenade on us with, “there’s also this one lab test that shows you might have Wegener’s disease … we may need to keep an eye on that.”  After researching the link I left there for you, I can’t stop repeating the doc’s conversation in my head as “by the way, you might also have a cool Nazi disease.”  You’ll have to read the Wikipedia summary later to see what I mean. :)

nazi_meme

While still stunned, we headed over to our appointment with an orthopedic surgeon… the key guy I wanted to see from the start.  The main intent of the original Mayo trip was hoping to get some options for replacing my right knee in order to get walking in some form again.  I considered getting a more definitive diagnosis only as a possible fringe benefit.  Honestly, it was kind of hard to concentrate on the idea of the surgical options when we were still stunned from the “simple diagnosis” surprise of the previous appointment after baffling doctors for more than a couple decades.

The short story of the ortho appointment is: “there are options.”  They aren’t great options by any means.  Basically, they could replace my right knee with a special “hinged” implant which fully encompasses the leg bones and should prevent the re-fusing that happened with the left knee’s implant.  This would allow me to straighten my right knee again, but might not give me much bending motion… all bets were pretty much off in that direction, and would be based partially on major effort in therapy.  To make walking actually work, they would have to rip out the left knee’s implant and replace it with a hinged implant as well.  This would then hopefully get both knees working the same way.  Again, lots of effort in therapy and no guarantees.  After much discussion, we all agreed the best move was to forgo surgery for now and continue working with rheumatology.

But first, it’s time for my echocardiogram.  Why an echocardiogram?  I had told the internal medicine folks during the previous trip that I’ve been experiencing chest pains, though I felt they were perhaps muscular or in my rib cage, probably due to the disease.  They wanted to cover all the bases, so lucky me. :)  This test was far better than being stuffed into tubes or attempting contortionist positions when unable to move most of my joints.  I simply had to lay down while the nurse kept pressing hard on my chest with a metal stick.  Of course, remembering that I suspected all the pain near my heart was in the muscles and ribs instead, this test was… painful.  We learned later in the day I was right.  My heart is fine, thankfully. :)

does-it-hurt-when-i-do-thisThis would be a good time to side-track just a bit and explain some of the fun J and I had throughout the day.  The first would be the “Special Needs” bathroom signs we kept passing in the hallways.  Like a good father, when she asked what those were for, I told her: “You.  You have special needs, my child.”  I nearly got pushed into the wall for that one. :)  I couldn’t stop repeating the joke every time we passed them as she drove my wheelchair all over the clinic buildings.  Of course, she enjoyed making fun of me when I asked her to push me to one of said bathrooms.  (I apologize if you don’t think I should make fun of myself.  You should be used to it by now, though.)

The second bit of fun we had was ribbing T about her new mega-sized purse.  That thing acted like a black hole.  Every time I would set a medical record down, or J would put down her tablet or a book, they would be gone when we looked seconds later.  We would hunt around and find out they magically ended up in T’s purse.  It happened to J a couple times when T and I went to an appointment.  Poor girl wouldn’t have what she intended to pass the time with and had to wait until we returned.  Or, J and I would be running and wheeling down hallways to our next stop, forget the floor and desk we had to get to, and we’d have to block all hallway traffic while waiting for her to locate and extract the schedule yet again.  That thing is a monster.

black_hole_purseBut what was really fun for J and I was all the driving around.  Honestly, it was pretty scary for me.  I kept thinking about those signs you see at roller coasters… “keep your appendages inside the vehicle at all times.”  There were some seriously long “hills” in the underground passage system between the hotel and clinic that she would speed-race me through, making me think back to Christmas Vacation.  Anyone else remember the scene where Clark Griswold, against any sane person’s judgment, applies astronaut-grade lubricant to his metal sled?

Back to the appointments, we next met with general internal medicine, where they followed up from our original visit with a  “goodbye” to us as we seemed to be on the right track with the other doctors.  A funny little tidbit about that original meeting with them is they shook their head when I mentioned my general physician back home usually just wrote down ankylosing spondylitis on my medical receipts since we figured it was “close enough.”  The internal medicine folks had discounted the idea as well with, “no, can’t be that… you don’t have anything in your spine.”  We got a bookmark and a thank you card for “letting us serve you” (with another bill, I thought ;).  At least we also got my tetanus shot covered while waiting at that appointment.  That stupid shoulder still hurts.

Now is when we scrambled all over the clinic trying to get every test scheduled for day three done on day two.  We were told this might be possible, and that earlier results would mean we also might be able to make the rheumatology follow-up our day three adventure.  (By the way, please don’t ask T why her husband insisted before the trip that it would be more efficient to book a hotel on-the-fly if we had to stay another day, rather than book it ahead of time and cancel if it wasn’t needed.  Seriously, don’t bring that up again.  It’s really difficult for me to get into body armor.)

First stop was for blood and urine tests.  As soon as the rheumatologist ordered these in the morning, I understood I needed to fast the entire time before taking them.  We were sitting around 3pm at this point, and boy was I getting hungry.  The blood draws were a great time.  The first vein seemed to work perfectly… until after a minute or so it simply stopped providing blood.  The nurse and I just kind of sat there staring at it for a bit… me wondering if it should do that; her shrugging and pulling out the needle.  Another nurse started filling vials and we were all laughing about how there’s no way she could spread it out enough to hit the minimum marks.  So, back for another poke and we topped the vials off.

blood_memeOnce that was finished, I raced through part of a sandwich and some much-needed caffeine as J raced my modern chariot over to get a chest X-ray.  I believe this was to establish a baseline for how my chest is working due to the state of my spine in order to monitor in the future.  This required a bit of contortion to attempt to stand up flat against the X-ray machine, which simply wasn’t happening.  We called it good enough after a few minutes and moved on.

Next stop was a bone mineral density scan.  The purpose of the test was for a baseline of how much osteoporosis has already set in vs. how much continues to over time.  Again, more contortion as I got to experience a bit of what a piece of paper feels like in a scanner.  Keeping my body low enough for a device to slowly scan over my hips and spine was a bit of a feat… recall how my knees are fused at crazy angles.

The last test of day two was an electrocardiogram to check out the electrical activity of my heart, as this disease will likely affect it… so again, more establishing a baseline to monitor in the future.  This was a simple, quick test until the nurse started having fun ripping out my chest hair from the bajillion patches that she applied when I showed up.  As much of life continually reminds me of movie scenes, this reminded me of a clip I once saw on Youtube from a Steve Carell movie.

We ended the day with enough time to grab a relaxing sit-down dinner near the clinic, race the wheelchair all over the underground subway system to find the new hotel, and veg out in front of the TV.

The morning of day three was pretty straightforward.  We grabbed breakfast and went back to rheumatology in hopes of them squeezing in our follow-up appointment before heading home, rather than having to come back a week later.  After a couple hours waiting, there really wasn’t much news other than finding out they were still waiting for some of day two’s test results.  So, I took a trip over to the closest bathroom and did something stupid.  Their handicap stall turned out to simply be what I can only describe as a “normal” stall turned into a phone booth with a metallic bar contraption bolted to the stool.  With my immovable elbow joints, I should have known not to try it out.  After bashing my rib cage in on the fall down (pain which is still making me quite miserable), I was pretty much ready to leave for the day.  Of course, when we were all done laughing about my mishap upon my return to the waiting area, the girls reminded me I should have used the Special Needs bathrooms.  Ah… how life tends to get me back for my joking. :)

karmaAround 11am, the lady at the desk (who was a rock star for all the help she gave us) informed us one of the tests wouldn’t be done until at least 3pm and likely the next day, so we were probably going to have to add a day four.  As it turns out, it was a Tuberculosis test which was only being done to cover a situation where the treatment for my disease could actually reactivate latent TB if I had it.  After some discussion, she went back to the doctor and they agreed there was no need to keep waiting for that test in the first place.

We got back to see the rheumatologist, and he went through all the drugs I was about to start taking for the rest of my life.  One is a drug also used for chemotherapy, so you can guess at the possible side effects.  The other major player is a “biologic” which will require either periodic visits to town for IVs or self-injections at home kind of like insulin shots.  Maybe J would love to help me out there. :)  Then there are others I will take to attempt to deal with the side effects of these two drugs, and there will be many periodic visits to continually monitor how my body is reacting to the treatment.  Things are definitely going to change in my daily/weekly schedule, but he’s confident these will slow down progression of all the joint fusion.

As it turns out, these are mostly the same drugs I refused to try out when I met with rheumatologists here in town years ago.  When nobody was confident what disease I really had, it never felt right to make such a life change in my early 30s… it just seemed like random experimenting as we wouldn’t even know if they were working for a year or more.  They also didn’t know as much about the drugs back then, and it sounded at the time like I would be well on my way to a liver transplant if started so early in life.  Discussing some of this with the doctor, he clearly felt bad for our situation, thinking maybe this could have gone much better for us if things had been caught and/or treated back then.

This is where my lovely wife stepped in and conveyed to him how we’ve come to see this journey.  While it sure would be nice if I had maintained some better mobility, he should not feel bad for us.  We would never change any of this.  We have come to know Jesus Christ so much more and have ended up with a faith we never would have otherwise.  God used this disease for so much good.  It took years to see and appreciate His perfect timing, but we can definitely look back and see it.  Even this trip was timed such that the doctor had the clues for a diagnosis due to the disease finally showing up in the “normal” places in my body.  My favorite verse, which I have used in my instant messenger note at work for years, pretty much sums up how I see this “adventure” we’ve been on.  Walking is temporal.  Faith is eternal.

8 Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ

Philippians 3:8 (ESV)

So, the next step is to take his notes (when he’s done putting them together) and get with rheumatology here at home.  Hopefully the Mayo trips are done, and we can move on with the next step in this process.  Before doing that, however, I would like to share one last moment from the trip.  As you can imagine, we were ready to race out of there and start the long ride home.  Well, right at the bottom of the elevators in the Gonda building is a huge lobby with a grand piano that people will periodically play music on.  Right when we got down there, we saw a ton of people gathered around it and they immediately broke into “Amazing Grace.”  I cannot begin to describe to you the beauty of that song, when sung by staff and patients of all sorts, also crippled by diseases, gathered in that area.  It stopped us in our tracks.  We were in awe.  It was such a special God-given gift of worship to end our trip.  While those singing were crippled, they were not broken.

You see, Paul himself asked for God to remove his own “thorn,” and this is what he got back.

7 So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. 8 Three times I pleaded with the Lord about this, that it should leave me. 9 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. 10 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 12:7–10 (ESV)

God’s amazing grace is sufficient for us, too.  May we all learn that life lesson… though I hope y’all are a bit less stubborn than me. :)

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Another Body Update

thor-hammerWell, we finally made it up to Mayo in Rochester yesterday to get me checked out by more of the big boys and girls in the medical field.  For those of you I haven’t seen or chatted with for some time, here’s a quick update summary of the current state of my body since the time of my older posts you can find under the Health category:

  • Left knee replaced in 2002, refused at about 20 degree angle over the next few years (zero range of motion)
  • Right knee fused at about 80 degree angle (zero range of motion)
  • Left ankle nearly fused around 90 degree angle (about 10 degrees of motion)
  • Right ankle fused at about 90 degree angle (zero range of motion)
  • Left elbow in process of fusing (about 45 degrees of motion)
  • Right elbow fused at about 45 degree angle (zero range of motion)
  • Jaw in process of fusing (can open to about the width of a finger)
  • Neck has lost some motion in all directions
  • Right hand has lost some motion in fingers/palm
  • Lots of pain in my ribs, especially the center… think feelings of exploding when sneezing

To further summarize… my body just continues to get worse.  I’m still able to bear enough weight on my left leg to get around the basement at home via a walker.  I pretty much stick to the wheelchair when I leave the house.

So… the Mayo trip.  Lots of you already heard we were headed up there for a day of appointments, and we truly have appreciated all the prayers and thoughts!  It always gives me a good sense of peace knowing you got our back.  I hope you enjoy some of the play-by-play of the quick trip. :)  Oh, and before you read more, know that we found the medical staff at Mayo to be extremely supportive… all of those we saw were super down-to-earth folks just like those back home.  I would say I’ll attempt to be brief, but… you may have seen this blog before and know better.

To start things off, I made a bit of a mistake.  I booked a hotel directly across from the building we needed to be at early in the morning.  I also didn’t book a handicap accessible room (don’t think there were any available on our short notice).  Wow, was this room small.  My wheelchair tires scraped the doorway on the way in and out.  If anyone else remembers the movie, I had to model Austin Powers in his classic scene, spending minutes to turn-around once inside the room.

Later that night, my walker and I got stuck in the tiny phone booth-sized bathroom.  I’m not going to find a video or picture for that, as I just don’t need to relive the experience.  T had a good laugh, though.

As for getting ready for appointments early the next morning, I had the fun instructions of fasting as of 7pm until whenever my blood tests could occur.  I also could not eat any foods for my final meal that had what I would call “flavor,” nor drink anything that I would call a drink with “flavor” either.  Anyone who knows my schedule lately knows I’m used to having “supper” around midnight a couple hours before bed and getting back out of bed between noon and 2pm for “breakfast.”  The next morning I basically felt serious jet lag in addition to being way off eating food.

So, we hit our first of three scheduled appointments for the day at 8am.  Our itinerary looked like this:

  • 8am – General Internal Medicine
  • 11am – X-ray’s
  • 1:45pm – Orthopedics

The short story of the first appointment went something like this:

  • Nurse comes in to grill us for a while, flips through my hand-carried medical history.  “Interesting.”
  • Physician’s assistant comes in to grill us much longer going through medical history in detail.  “Wow.”
  • Physician comes in after debrief from PA, shares he’s the same exact age as me and grew up down in Solon, we spend time laughing about how crazy my case is and how perhaps the only joint working might be my nose.  I instantly graduated to the “cool case” level and he left the room to bring back what appeared to be the rest of his medical staff.  They ooh’d and ahh’d over my condition, poked and prodded me, started talking about the lab photos (for future posterity? :) that must be taken at some point, and left to completely revamp my entire schedule.

Enter the new schedule, which has now become something like this:

  • Today – Lotsa blood work, meet with Ortho folks, lotsa X-rays, MRI after 6pm
  • Tomorrow – Echocardio-something, meet with Immunization folks (because let’s get another Tetanus shot… why not?), another visit with General Internal Medicine folks
  • Few weeks later – meet some different Ortho folks
  • Mid-August – meet with Rheumatology folks
  • TBD – follow-up?

So much for the consolidated get things done all today and return for an outbrief at the end of the day with the medical team plan forward.  Though we completely expected something like this, the schedule turned kind of crazy.  So, while I went through tests at each new department, T worked on the side to get the schedule turned into at least something manageable between today and a single future appointment.  A photo I recently saw on Facebook models what I could only guess things looked like for the rest of the day if you compared her path with mine.

shoppingBefore those paths could even start, our scheduler realized the X-ray’s shifted out after the Orthopedic consult due to all the extra tests being ordered.  Apparently, Orthopedic doctors prefer to actually have X-ray’s to look at when attempting to evaluate you.  So, we raced over to get X-ray’s crammed in prior to blood work.  As you might guess, blood work was the “I can finally eat again” finish line I was sort of focused on throughout the morning.

At some point around 12:30, I lost count of the X-ray’s that were taken for at least an hour.  I believe we covered every joint from three to four different angles.  There was a lot of “OK, move this joint like this,” to which I could only respond with, “Yeh, sorry… that one is fused too! :)”  Lots of laughing and lots of pain as we tried to contort my body in ways the X-ray equipment could be contorted to match up.  On a potentially-related note, my bedroom seemed slightly brighter last night.

By the time we were done, we were well late for all the blood work, which took all the remaining “free time” window we had prior to meeting with Ortho folks.  Speaking of Ortho, saw a couple doctors there, who also were completely perplexed and agreed we really need to be doing more tests and meeting some more of their folks.  Schedules continued to be adjusted.  By the time they were done grilling me over history and evaluating me, it was nearly 3pm and the MRI was shifted up to 3:15pm.

Enter Quizno’s, source of food WITH flavor.  They have a Quizno’s in the building.  Finally some food made so fast we had just enough time to slam it down make the MRI.

The prep for the MRI was fun.  I’ve done these before, so had no real shock at what was about to happen.  I’ll summarize the events:

  • Set me up with an IV in case they decided to inject me with contrast dye at some point.  This is where I model a human pin cushion as my veins marvel the nurses with their ability to somehow move out of the way just at they attack them.  Several armbands later, we’re in.  (The nurses afterward ask if I’d like to keep all the various “war wound” bandages on to impress my wife and get sympathy… I know T too well to bother trying. :)
  • I attempt to put on a “wrap-around” gown by myself.  A wrap-around gown has three arm holes.  Because… you get to wrap it around and not have an open back.  Ingenious design.  However, one of the stupidest things I ever tried to do myself.  If you are confused why, go back to the top of this post and remind yourself of the state of my joints. :)  I spent minutes moving my body in directions I shouldn’t have, feeling a bit like I was playing a frustrating version of human Tetris, but finally got the gown on.
  • I exit the dressing room and T can only laugh.  I still have my shirt on underneath.  Back inside I go, for the 6th (?) dressing room change of the day.
  • Enter the MRI room… where they spend minutes trying to figure out how to position my body in a way to fit down the tiny tube…  all the while asking me to move certain directions after they had already stuffed in some of the most amazing ear plugs I’ve experienced.  About an hour after the contortionist exercises were complete (again, remember the irony that most of my joints are fused :), it was time to stop feeling like the picture below and head on back home.

PoohStuck

So, exciting day but not much news in terms of further diagnosis beyond that of the physicians I’ve seen throughout all the years leading to today.  Everyone we saw was just as baffled as folks back home.  We head back up again mid-August for another full day of testing and meetings.  Who knows what will be ordered that time around or how many future visits are in store.

Before I end this post, however, I want to take a bit to mention an interesting article T and I read right after meeting with our very first nurse of the day.  It was the cover story of Rochester Magazine that was sitting in the room, called “The Key to Contentment” with a subtitle that went something like, “Has this doctor found the secret to happiness?”  It was a read filled with interesting comments like this one:

Our brain is designed as a machine. If you were to design a machine to maximize suffering, that would be the human brain. … The brain inflates the negative, it discounts the positive. I compare myself with those who have more, not those who have less. That is my instinct as a human. When I have food, food stops rewarding me. I want an air conditioner. If I have one car, I want two cars. I keep chasing. Why people are struggling often has less to do with personal predisposition, and more to do with how the brain is designed.

All we could think was, “he’s so close to the truth, but so far.”  Yes, our brain is designed by our Creator.  However, the Bible tells us there was a fall, and ever since our heart is the problem.

9 The heart is deceitful above all things, and desperately sick; who can understand it?

Jeremiah 17:9 (ESV)

21 For from within, out of the heart of man, come evil thoughts, sexual immorality, theft, murder, adultery, 22 coveting, wickedness, deceit, sensuality, envy, slander, pride, foolishness. 23 All these evil things come from within, and they defile a person.”

Mark 7:21–23 (ESV)

Only God, through His grace and mercy toward us sinners bought and paid for in the death, burial, and resurrection of Jesus Christ, can fix this issue and bring us contentment.

26 And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh.

Ezekiel 36:26 (ESV)

11 Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. 12 I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. 13 I can do all things through him who strengthens me.

Philippians 4:11–13 (ESV)

Our prayer is that all of you come to know the true source of contentment in any circumstance.  Paul learned to be content… and we are still learning ourselves, to find contentment no matter how my condition progresses.  We pray you do as well.

Thanks again for all the prayers and thoughts!  Until next time.

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Yes, I’m still here

miss_me_yetNo, this is not a political post.  Anyone around here long enough would know I keep most of those thoughts to myself.  Not sure why… guess I just do.  Of course, maybe I just made a statement there with the picture I chose to post. ;) 

 

Anyway, yes, I am still here.  I still want to blog more frequently again, but continue to choose other things to occupy my time.  I figure tonight I would just check back in, say “Hi”, let you know what I’ve been up to, and maybe try to get myself back in gear.

 

First off, I’m getting along pretty well after the “fun” at the beginning of last month.  I’m still in pain every day, and I’m still deteriorating, but I now have new “gear” to help make things easier.  My walker, affectionately named “Norris,” is helping out quite a bit.  That’s more like a three-step joke that Jake led me down… Norris => Chuck => Walker, Texas Ranger.  Awesome stuff dreamed up at work.  We’re so under-appreciated, aren’t we Jake?  As for other “gear” from my occupational therapist, I have the longest shoe horn I have ever seen.  It’s great… the kids, of course, use it as a sword.  She also provided me with a “pusher,” which can only be described as a long stick with some gadget on the end that the kids also figured out can be used as a weapon.  And, finally, I have a “grabber,” which is a long device with a trigger on one end and a claw on the other, which for some odd reason can also be used as a weapon.  No wonder the kids keep asking when my next ambulance ride will be.

 

Secondly, I have all but divorced myself from movie and hulu.com “TV” viewing.  I still watch the occasional Friday or Saturday night movie with the family, but that’s it.  (Megamind was outstanding, by the way.)  So, for all those out there who only came here for the movie reviews, I apologize.  I watched too much strange stuff that you never would bother watching anyway.  Admit it.

 

Thirdly (which sounds weird), I’ve been spending quite a bit of time over the past several months working on the website I put together for Trekkers Bible Study, which I attend Sunday mornings.  There is audio going back over a decade of studies that I enjoy listening to tremendously.  Thank God for the faithful preparation and recording of those lessons by the Trekkers team.  After only attending in person for just over a year and a half, I am indebted to what they kept around.  I’m still catching up, attempting to listen to older lessons I wasn’t there for, extracting and entering notes, Scripture references, etc.  I was attempting to “finish” all of them (I’m getting close) before getting back to blogging again, but I need a break.  If you’ve been looking for a good way to study the Bible, I think you’ll find more than enough there to get you started.  Just click on the “By Series” link on the left-hand side and see if there is something that interests you.  If not, try somewhere else and get into the Word.

 

Finally, I’ve told various people about a stack of post-it notes collecting dust for some time now.  Actually, part of the stack is at least as old as this blog.  I’ve been jotting down topics I would like to expand on as long as I’ve been around here, but haven’t yet taken the time to work through them.  I figure tonight that I’ll list some of them out here so that I have a bit of incentive to finally get to them.  Now you might know what to pester me about, rather than just tell me I need to get blogging again.

  • Catch up on book reviews… I’m still reading, and have (I think) at least eight books to review.  In fact, at least a couple I expect need reviews to themselves instead of my typical combined posts.
  • Jonah.  I have some things to say regarding this tendency we humans have to question the Word of God and its implications.
  • I got to thinking I never explained as much as I could have regarding one of the dreams I had from God in this post.  Due to some recent conversations, I feel there is more to write down.
  • I’ve been contemplating how my disease is a physical picture of the spiritual reality of sin.
  • My prayer that people praise God, not my faith.  If you only understood.  That’s probably not going to result in a blog post.  I think that’s all you’ll get for a while. ;)
  • How I see myself so often representing the Despair.com “Mistakes” poster.
  • Even though I’m not watching movies much anymore, perhaps some retro-reviews.  I don’t plan to keep up with the top-five lists Jake has been posting lately, though.  That’s fun stuff.
  • How I’ve mentioned Jake for the second time now in as many bullets and how one of us must be stalking the other.
  • Random connections or insights that have been shown to me in the Bible during study that are just plain intriguing to me.
  • Christian vs. public education.
  • The wonderfulness of having a wife work part-time (or less).  Yes, I’ve already been over it a bit before, but maybe it’s time to repeat it and say more.
  • Sharing some pics of a sink hole in our yard.  Should take only minutes to post.  And yet, I had to dust that post-it note off to read it.
  • Ten Commandments and The Princess Bride.
  • Starbucks.  Africa.  Sports.
  • Seattle’s Space Needle and God.
  • Series of posts on some of my favorite songs.
  • My board game addiction?
  • Abortion.  Global Warming.
  • God’s patience with America.
  • Hy-Vee.  The NuVal system.  Double-stuffed Oreos.
  • Paul’s “thorn.”  The Prosperity Gospel.

Well, those are the notes I could still find.  There are others still floating around in my head here somewhere.  Sorry if that list leaves you hanging.  Maybe you can at least focus your poking and prodding now. ;)

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Would you take the place of this man?

crossesNo, I’m not referring to me.  Going into this weekend, I kept hearing Jeremy Camp’s song, This Man, on the radio all week long.  I kept thinking to myself “no way” whenever the chorus came up.  Two lines are repeated each time:

Would you take the place of this man
Would you take the nails from his hands

Could anyone honestly answer that one in the affirmative?  I know I can’t.  I bring this up in my follow-up to last night’s post on our rough weekend, because I think some of the events must be seen in this light.

 

While there was much praying and crying from Friday leading into Saturday night, due to the lack of relief from the increasing pain, the bottom dropped out after midnight as I mentioned before.  I must admit I have desired to forget that moment more than once since then, but I have to get it out there.  When I was on the side of the bed with legs dangling over, in ankle pain I hadn’t previously imagined possible, eyes blurred over with tears, and wailing to God for mercy, I felt nothing.  That presence of God that always seems to be there?  I couldn’t feel Him at all.  T, on her knees with the kids surrounding her, couldn’t feel Him either.  We didn’t have to discuss it.  We could hear each other crying out as one, and knew the same thing.

 

You see, we believe we got a glimpse of what Hell is like.  When you know the only relief can come from God, and you cry and cry out, but you get nothing back.  He’s far from you.  He won’t lift a finger.  It is too late for you, as it was for the rich man.

24 And he called out, ‘Father Abraham, have mercy on me, and send Lazarus to dip the end of his finger in water and cool my tongue, for I am in anguish in this flame.’ 25 But Abraham said, ‘Child, remember that you in your lifetime received your good things, and Lazarus in like manner bad things; but now he is comforted here, and you are in anguish. 26 And besides all this, between us and you a great chasm has been fixed, in order that those who would pass from here to you may not be able, and none may cross from there to us.’ 27 And he said, ‘Then I beg you, father, to send him to my father’s house— 28 for I have five brothers—so that he may warn them, lest they also come into this place of torment.’ 29 But Abraham said, ‘They have Moses and the Prophets; let them hear them.’ 30 And he said, ‘No, father Abraham, but if someone goes to them from the dead, they will repent.’ 31 He said to him, ‘If they do not hear Moses and the Prophets, neither will they be convinced if someone should rise from the dead.’ ”
Luke 16:24–31 (ESV)

We were alone.  My wailings turned into crying out for Him to come back, to asking where He had gone, and why He had left us.  At one moment during the wailings, Jesus’ words themselves tried to come out of my mouth, but I knew I wasn’t worthy to repeat His words from the cross.

46 And about the ninth hour Jesus cried out with a loud voice, saying, “Eli, Eli, lema sabachthani?” that is, “My God, my God, why have you forsaken me?”

Matthew 27:46 (ESV)

I’ve cried out to my Father in Heaven many times before, but in hindsight, I don’t think I ever fully understood what it was like.  This time it felt like every part of my body was crying out, not just a piece of me.  It’s easy to read and say, but so much harder to really take part in, though God tells us we’ve received that right as His adopted family.

15 For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, “Abba! Father!” 16 The Spirit himself bears witness with our spirit that we are children of God, 17 and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.

Romans 8:15–17 (ESV)

I’ve heard Romans 8:15 so many times over the past several years, I can’t begin to count them.  But in reflecting on the events of the weekend, I only just recently noticed I haven’t paid much attention to the rest of that passage – “provided we suffer with him.”  There are several other passages on suffering in the Christian walk, which I’ve been over before in my Does God really say His way is easy series of posts.  However, I have a few other verses in mind this time around.

29 For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake,

Philippians 1:29 (ESV)

 

10 that I may know him and the power of his resurrection, and may share his sufferings, becoming like him in his death,

Philippians 3:10 (ESV)

 

12 Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. 13 But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.

1 Peter 4:12–13 (ESV)

You see, while we believe this was a glimpse of Hell, we also believe it was a gift of God (however unpleasant at the time).  We believe is was a taste of how Christ suffered spiritually on the cross as He cried out to His Father.  I don’t know any other way to explain it.  God tells us many times in His Word how we’ll share, even if in the smallest part, in the sufferings of Christ.

 

Did we think of this after I finally made it back into bed, going partially into shock such that T had to bear hug me for several minutes?  Not a chance.  We were only thinking of ourselves.  We weren’t ready to see the joy at all, though I did eventually recognize that the peace of God had returned at some point during the next half hour.

 

Fast forward to Sunday night after the doctor left.  I mentioned there was a point at which my pain levels dropped out of nowhere, and I knew I could finally roll over to my other side.  God answered your prayers (and ours).  He began to move quickly, though I had no idea how many of you were out there praying for us throughout the day.  God was faithful.

9 Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love him and keep his commandments, to a thousand generations,

Deuteronomy 7:9 (ESV)

Only after Russ, and later Ken, revealed some of the details of the Trekkers class praying, as well as hearing from other individuals and groups who were doing the same, did T and I start to realize what was happening.  God had listened, and He had acted.  Pain level changes occurred in a few, significant jumps over the hospital stay, even while pain medication was being stopped.  There is no explanation other than God’s supernatural acting.

 

In fact, what had been so difficult about Saturday night during my worst moment is that the pain in my ankle should have never been so intense.  It was unbelievable pain that I simply can’t understand in hindsight.  I’ve read  a few debates on the worst pain imaginable to man, and I probably didn’t get there, but to me I can imagine nothing worse.  The pain scale didn’t have a number that fit.  And yet, after limited pain medication which only appeared to take the edge off, I was almost back to normal pain levels after less than two days.  I see only one viable explanation.

2 Count it all joy, my brothers, when you meet trials of various kinds, 3 for you know that the testing of your faith produces steadfastness.

James 1:2-3 (ESV)

God was putting us through another trial.  A trial for our good, and hopefully one for the good of at least a couple others.  You see, though I knew this final verse I will share, and kept trying to remind myself all throughout the early events of the weekend, I couldn’t yet see it.

28 And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Romans 8:28 (ESV)

Only now, after the entire week has taken place, have our eyes started to open.  I pray the next lesson doesn’t take us so long to recognize it.  Thanks for suffering alongside with us, and helping us to see God’s goodness as well.

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Rough weekend

pain_scale

Well, I made it out of the hospital Tuesday afternoon just before the winter storm got really nasty.  I apologize for not getting an update out last night, but I sure needed some rest.  I also apologize for the length of this post, but you know me… I have an issue being terse.  I actually have a second (and shorter) post planned, but you’ll have to wait until tomorrow for it.  I have a different take with that one, and I hope you will come back to read the post.  Tonight, I’ll walk through the main details of the weekend, the physical aspects if you will, before I forget them.  Tomorrow, I’ll shift focus to the spiritual aspects which, though I may want to at times, I don’t imagine I can forget.

 

So Friday evening, I started feeling a bit of a “crash” coming on.  I usually encounter one or two of those every week, where the pain simply ramps up to levels that bring my activity nearly to a halt.  Usually this will occur the day after I “juice up” on Advil for company, for a road trip, or for a long day working from home.  Friday, it simply happened.  However, instead of stopping everything at 8pm and getting some sleep, which means I’ll have a long night tossing and turning in bed, I dove back into updating online notes for the Gospel of John study on the Trekkers Bible Study site I’ve been working on over the past several months.  Though in hind sight this might not have been a good idea, I felt the need to finish the task before getting to bed… I felt something wasn’t right that night, and I had to get it done.

 

Fast forward to about 1:30am.  I had a significantly difficult time making the trek upstairs to get in bed.  My ankle has kept me working from home for at least the past two months, so it was already a hard enough trip.  That night it was approaching an unsafe idea to attempt.  If you take a glance up to that pain scale you may have seen before in a hospital, I’d say I was around a 4-5 just walking level with my cane, and hit 6-7 when on the stairs.  By the way, I found a far more fun pain scale online made with Lego guys, but it was copyrighted.  You may want to pull it up in another window for reference to keep this post “lighter” :).  In fact, its faces and descriptions actually represent the pain numbers better than the one above.

 

Anyway, after finally making it up and just before getting into bed, I downed some pain medication I had brought up just in case it wasn’t a “normal” crash.  I got situated in bed, and the pain hit hard after the pressure of walking was over.  I quickly hit 8-9 pain levels, which is definitely beyond a normal crash.  I knew something was wrong, and cried myself to sleep, praying to God to have mercy on me and take it away.  Although, in a moment like that, I was still reminded by Jesus in the Garden of Gethsemane to pray that God’s will be done, regardless how I feel.  Needless to say, that was not an easy prayer to make while I was in the middle of extreme pain and shedding tears into my pillow as quietly as possible.  The rest of the night was not much better.

 

Saturday morning was J’s big family birthday party.  I knew how excited she was, so I was hopeful the pain pills had done their trick.  However, when I went to place my right foot on the ground, it was an instant crisis as soon as it touched the ground.  I haven’t felt pain that intense in a very long time.  I hit 10 on the pain scale just from the touch.  No way could I attempt putting more weight on it.  After T finished trying to comfort me after screaming out in pain, she started calling friends to stay home for the day, and we whittled it down to neighbors and immediate family.  Poor birthday girl… J held up really well, though.  I did not, however, writhing for most of the day, even with some more pain pills in my system.

 

I never left bed.  I found that I could only be laying on my left side to get some amount of comfort (actually down to a 6, which was a blessing).  Every attempt to roll to the other side hit 8-9 levels again.  I gave up and stayed on my left side, wondering how I would have done with Ezekiel’s task of doing that 390 straight days (even if it were only for part of the day).  This may be TMI, but I can only say dealing with any bladder issue was not a fun experience throughout the day.  Every time I had to attempt that operation brought back 8-9 pain levels, along with much crying and praying by T and me.

 

Fast forward to the night and things didn’t get any better.  I now only had relief to about a 7 when on my left side, and any move to the right side shot right to 10.  Things were bad, and every move woke me back up from my light sleep.  About midnight Saturday I had a painful bladder issue that couldn’t be left alone.  An hour later, with 8-9 levels the entire time from the ankle, that job was finally complete.  It took me almost having to stand on the leg to solve it.  This meant I was mostly off the bed, which was not a good thing.  When I went to get back into bed, I was a goner.  I hit a 10 every time I lifted my right leg.  There was nothing I could do.  I just had to sit there, leg dangling over the side, and take the 8-9 until God gave me the strength for another attempt.  Another half hour later, praying and crying away with T praying on her knees, I finally got my leg almost up on the bed.  But, I couldn’t get any further, and ultimately had to drop it back down again.

 

This turned out to be a bad idea, as I was hit with the worst pain I have ever felt.  I’ve been through a total knee replacement, and even though the physical terrorists (I mean therapists) can easily bring you to the top of the pain scale, there was no comparison here.  I couldn’t imagine worst pain.  I was wailing.  I was uncontrollable.  I couldn’t see out of my eyes the tears flowed out so fast.  The kids ran in and fell on their knees, helping to comfort T as she kept crying and praying.  I don’t know how long I cried out to God for mercy, but eventually I wore out.  I have much more to say about that experience in tomorrow’s post, so I’ll move on.

 

I finally received the strength from God to get my leg back into bed.  It was simply torture the entire way, and the relief of getting established on my left side was not much, but it was there.  T came over to hold my hand until it finally subsided to the level 8 pain I slept with the entire night, if you could call it sleep.  This is the point we knew we had to get to the hospital in the morning.

 

All I can do at this point in the story is be thankful T’s dad decided they couldn’t get me to the van.  T called 911 after her parents made it down around noon on Sunday, and I attempted to get clean clothes on for the ride and a quick “nap.”  Thank God ambulances come with big, burly men.  They were several inches shorter than me (who isn’t?), so I gave them a workout on our way out the bedroom to the stretcher, and even more so on the way out to the ambulance.  At least they could keep me on my left side during the torturous ride in to the hospital.  Don’t those things have shocks?!

 

We got to the emergency room, and relief showed up pretty quickly.  Some strong narcotics from the IV, and I was back down to 6 pain territory.  I still couldn’t move to the other side, and every poke and prod on my ankle brought all the pain back.  I endured X-ray’s of the ankle and an ultrasound that went way too far up my leg, if you ask me.  Thank God that He gave us all a sense of humor with these things, which was finally coming back as we chatted with my parents, who met us there.

 

X-ray’s showed no fractures, which was good, and the ultrasound showed no blood clots, which was also good.  The problem was, the pain wasn’t changing any more, and we had no answers.  It simply made no sense, especially when the ankle looked no worse than its normal deformed, swollen shape.  I have some thoughts on that ready for tomorrow’s post.

 

At this point, the ER doctor was ready to release us to go home with some pain meds.  We weren’t ready to go, so convinced him to admit us so I could get a take from my regular orthopedic surgeon in the area the next day.  After all, the drugs wouldn’t be any stronger, and I still couldn’t get on my other side.  How in the world could we even get me back in the house, let alone the van outside?

 

They finally got me up to the orthopedic floor, which was familiar from my previous knee surgery.  It almost felt like home.  It was mid evening, and still a painful deal, as if the pain medication didn’t want to work hard.  I couldn’t roll over all evening, and finally everyone left for home by about 9pm.  The kids, by the way, stayed with the McIntosh’s from their school who have become wonderful friends.  It was very hard for T and I to see each other go, but there were things that simply had to be taken care of that night at home.

 

The surgeon on call finally met with me about 10pm, and we talked through some of the options I had.  There were really only two options at that point for relief outside of pain medication.  The first, which he thought wasn’t a good plan, was ankle replacement.  Many of us know how my knee replacement went, with my body growing bone and tissue around it, fusing the joint back up within a year.  Option two was to simply fuse the joint by “cleaning” it out so a pin or more could be inserted to lock everything in place.  He mentioned calling in the foot and ankle specialist from his group the next day before we made any rash decisions.

 

Later as I lay there after a stretch of prayer, trying to get to sleep, still lamenting that I was on my left side, something changed.  The pain levels simply dropped a couple notches.  I suddenly knew it was time to try rolling over.  By God’s grace, and the prayers of hundreds of you out there throughout the day, I was easily able to make it.  In fact, I could finally relax, basking in my new position on my right side.  I can’t explain the peace I finally felt.  Maybe more on that tomorrow.

 

By Monday morning, the pain hadn’t come back any worse.  I was hovering at about a 4, regardless of how I laid there.  It was still an 8 or 9 to the touch, but my ankle was finally at a point I could get rest, even if the hospital staff tried their best to interrupt it.  Physical therapy that morning was able to get me hopping about on one leg using a walker, but that was just plain dangerous and we all knew it.  T and I knew something dramatic still had to change.

 

I met with the foot and ankle specialist later that day, and he felt the same as the on-call surgeon.  Fusing my ankle was the way to go, though we could try out a fancy brace before going too much further.  When the lady came later to take a 3-D scan of my leg and ankle for the brace, the engineer in me was in awe.  That was one of the cooler things I’ve ever seen.  Turns out it’s going to be a medieval, leather strap-on that goes half-way up my calf… can’t wait. ;)

 

I should mention though, that between the visit from the specialist and my brace scan, I had another fun time with physical therapy.  However, this time I was allowed to attempt putting pressure on my ankle.  As it turns out, my pain had suddenly dropped another two levels at one point early afternoon.  I should also mention that they had actually stopped the automatic pain medication earlier at 4am, which I only just found out.  God and your prayers were at work.  I was at a 2 laying down, and only a 6 while putting 25% weight on the ankle.  I can’t explain how much better we all started feeling after that.

 

Our good friend Russ (which I suppose is funny to say, since he reminds us we don’t all know each other that well yet… it just feels so natural for me to say) stopped by early in the afternoon and got to witness the 3-D scanning.  He’s an engineer as well, so might have been as in awe as I was.  Anyway, we had a great time chatting, and T and I were beginning to feel some relief, though things were still a long way from us going home.  I am still driven to great humility as I recall how Russ told us everyone at our Bible study prayed for us on Sunday morning.  There are so many people in the study, and within their families, who need prayer, and it completely overwhelms me to think they spent focused time for us.  I am so grateful for all their prayers for God’s mercy, grace, healing and will to present themselves.  I can only pray that I have much time left to return the favor.

 

The next session late Monday afternoon with physical therapy had me trying stairs for the first time, which was essential to tackle before returning home.  If I couldn’t make stairs, we had two choices before going home: surgery, or look for a new house.  (Ok, maybe a friend’s house or a hotel would have worked for a while, but we were still being a bit dramatic.)  I went for stair number one, and it wasn’t long before I realized I’d be in a pain level 10 situation if I threw all my weight into climbing.  This, of course, was only an issue because my left leg can’t climb stairs since the knee is locked at a 20-degree angle.  I had to use my bad ankle for the climb.  Obviously, not a great situation.

 

Anyway, as we returned from PT to my room, we met Ken in the hallway and had a wonderful time chatting with him.  We even got to talk some with Marsha over the phone.  We may have missed Bible study that weekend, but we felt a touch of “home” as they lifted us up.  Just thinking about possibly returning to class next Sunday still brings me to tears.  I suppose that sounds funny, but my time there means that much to me. 

 

We were soon overwhelmed with guests, as Glenn, Greg, Jason, Jake, Dave, Gerri and Vince showed up from work over the next couple hours.  The roads were getting very slick Monday night, so I’m just going to say they were all crazy for coming out, and yet I wouldn’t have felt as great if they never made it.  We had a great time reliving some old work moments, and I think at least a few of us realized we all need to do that more often than the times I’m in the hospital ;).  We’re too serious of a group at work sometimes.

 

After Ken and soon the rest, had left, we spent a good amount of time revealing more of the serious details of the weekend to Gerri and Vince.  This was the first time I met Gerri’s husband, and I can’t wait to talk to him more.  It’s funny how quickly believers can become friends sometimes, isn’t it?  Anyway, as they left, Vince led Gerri, T and me in a great prayer for healing and other things, and though I didn’t feel anything happen, I will tell you that by the time they left the room, I had no pain in my ankle.  I felt such a sense of peace again.  If it wasn’t so late at night, I considered calling PT to rush me down the hallway to try the stairs again.

 

T went home to be with the kids shortly after, and I was left alone to thankful prayer for the weekend God put together, and for all those who played their part.  I can’t name all those who prayed for me.  I can’t name all those who talked with T on the phone over any of those days, but know that we are grateful you played your part.  We will never be able to pay you back, but we will give it a shot.  While I’m at it, thanks Moms and Dads for all of the support you provided to help out T.

 

To make the rest of the story short, Tuesday I was still resting with zero pain and virtually no pain medication.  I was able to make stairs early that morning with absolutely no problem.  Pain never climbed above a 4 on the stairs, which is what I have lived with for quite some time.  There is still an ankle fusion on the horizon, whether God allows my ankle to do it naturally, or He lets us know it’s time to do it medically.  While man has no complete cure for me, here’s to the new brace on its way giving me some pain relief in the mean time.

 

Of course, God can still heal me completely through His means, though we don’t know if it’s His will.  We can only pray our will aligns with His.

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