Tuesday (12/29/2015)

Update:

My family and I just returned to Wisconsin from a week-long vacation in California.  We were visiting my son in Burbank where the daily high was in the 60’s (and they were complaining about how cool it was).  The high here in beautiful Fall Creek is supposed to be 27 today (at least the snow has ended for now).  Welcome back to reality!

I had hoped that the nerve block I received a few days before departing for California would allow me to walk while we were on vacation.  The block only partially worked.  I was able to wear my prosthesis and stand for short periods of time; but I was unable to walk.  Having the prosthesis on made transfers from my wheelchair easier and cut down on the curious stares that I received while in my wheelchair.

Despite not being able to walk and being stuck in a wheelchair, I had a great time vacationing.  I tried not to let my disability limit me or stop me from enjoying myself.  I even went on a horseback ride!  I cannot put weight on my prosthesis without pain; but with lots of help I got on the horse and went on 90 minute ride overlooking Burbank!  I was able to take a boat tour whale watching and saw whales, dolphin and a sea lion.  I went on the Hearst Castle tour.  My wife and I got to see the kitchen (which wasn’t on the tour for everyone else) so that we could avoid stairs.  After the tour we went to the beach where elephant seals were congregating.  I went on the Warner Brothers Studio tour (which was a little more complicated transferring from my chair to the golf cart over and over).  I took an afternoon going through a small part of the Getty Museum.  The only drawback to viewing art from a wheelchair is that the lighting is set in such a way that there was a glare on the paintings at my viewing level unless I was at least 10 feet away.  One of my favorite things was to go to the beach in Malibu.  I wanted to get my feet wet in the Pacific Ocean (I’ve been to the Atlantic and the Gulf before; but never to the Pacific).  I gave my prosthesis to my daughter for a gag photo of her dipping my toes in the water. The beach we stopped at wasn’t too wide, so I decided to force my way across the beach on my wheelchair.  It took a while but I did it!  A stranger lent his assistance to my son and daughter as we worked to get me back up the sand to the concrete.  We did a lot of things while in California and I enjoyed them all!

wheelchair-sized porta-potty in CA state park

Hearst Castle

Dining Room in Hearst Castle

Hearst Castle

I’m thankful for all the extra work that my family put in loading and unloading my wheelchair out of the car and helping me up hills.  Everywhere we went people were very eager to help accommodate me as best they could.  As a manual wheelchair user, I do have to state that I HATE hotel carpeting!  That quality carpet and padding make it softer to walk on but really make using a wheelchair more labor intensive.  I’ve found that most handicap rooms are not designed for those in wheelchairs needing more clearance.  My hotel room was beautiful; but I am thankful to be home where at least I am used to the slightly inconvenient quirks of my house.

Getting on and off the plane turned into the greatest adventure!  A regular wheelchair is too wide for the airplane aisles, so at the door of the aircraft I had to transfer to an aisle chair.  It is an extremely narrow little wheelchair with lots of straps to keep you on it while they squeeze you down the aisle to your seat.  That meant that I had to be loaded first and unloaded last on each flight.  I figured that I got my money‘s worth for my ticket since I got to spend over an hour longer on the plane than anyone else on the flight.  LOL.  On both flights they moved my assigned seat forward so that they wouldn’t have to take me so far back on the aisle chair.  On our return flight I was right behind first-class and I had over two feet of leg room!  Score!!! That was very nice.  On the flight out to California, my leg and sciatic nerve were really “singing” to me because I couldn’t stretch out.  On one flight after arrival, apparently they forgot I was on the plane waiting for the aisle chair so I could deplane.  I had fun chatting with the stewardesses, watching people clean the plane, and maintenance man working on a balky overhead compartment door.  My daughter who was waiting for us at the gate said that they were starting to pre-boarding passengers for the next flight when someone ran off the plane to stop them. “We still have one passenger on the plane waiting for an aisle chair!” My daughter said that sent people scurrying around to get me off.  I’m glad they did, I really didn’t want to go to Dayton Ohio (their next destination).  If it had been to Miami, Florida, well, then I’ll just stay on the plane, thank you very much! 

We got to meet a number of Joshua’s new friends, people from his new church home, and some people he works with.  I was able to see the apartment where he calls home.  His apartment is on the second floor of the building and there are no elevators.  I really wanted to see his apartment, so I crawled up the two flights of stairs to get there.  I feel sorry for the guy who met me coming down the stairs as I crawled up.  My son was down the stairs and out of sight, folding my wheelchair to carry it up when the guy saw me (without a prosthesis) alone on the stairs.  He was obviously surprised when he saw me crawling and probably thought the Zombie Apocalypse had finally begun. “There goes the neighborhood.  One zombie moves in and suddenly the building is full of them!!” Ha! Ha! 

I’m supposed to contact my doctor in Rochester, MN today to let him know how the nerve block worked.  I have no idea where we will go from here.  My prosthetist is already thinking about a different socket design to see if that would help me.  She is thinking that an elevated vacuum system might work better for me.  I currently use a pin system.  The vacuum system has a built in vacuum that removes the air to secure the prosthesis to my leg.  That changes how the weight load is distributed and may help relieve the pain I have.  

We’ll see what the next plan is and how it works for me.  There are no guarantees and there are no obvious physical reasons for the pain I have, so it seems to be down to guess work and trial and error for any solution.  I’m not ready to give up the dream of walking again just yet, so all I can do is soldier on.  I’ve learned not to set my hopes too high while at the same time, maintaining hope.  It’s hard when time after time nothing seems to help.  “This is it!  This is going work!  Nope! It didn’t work after all.”  I know it isn’t due to the quality of care that I am receiving.  I’m just an especially unusual case.  This situation has drug on now for over a year.  I do hope that we stumble upon a solution that works soon! 

A Thought for the Day: 

One lesson that is continually pounded home for me is that my value and worth are not dependent upon my ability to walk or to work.  For most people, our identity is wrapped up in our job and accomplishments, the things we can do.  I think that most of us have an innate desire to contribute.  We think that our life matters because of what we are able to do.  There may be some truth to that; but the reality is that each of us matter just because we are!  You and I are no less a person because we can no longer do a task that we used to be able to do.  If our personal value was truly dependent upon what we can do or accomplish, then older people, those with a crippling illness, those with a physical, mental, or emotional limitation, as well as the young, would all be considered worthless. 

Our society contributes to this inaccurate concept of value.  Athletes are valued by how well they play.  Celebrities are rated on how beautiful they look.  The media makes them spokespeople to endorse products and political views. We listen to those who are wealthy or who have made a mark on society.  We fawn over those who have made it and ignore those who have not.  Cheerleaders and jocks are usually on the top of the heap in high school.  Even the church elevates those with large congregations to stardom.  We need to wake up!  These people are not necessarily brighter or more capable to offer their opinions.  In fact if you look at their lifestyles, we shouldn’t be listening to many of them about anything.  It isn’t accomplishments, ability and wealth that really matters.  It’s character, courage, a spirit of determination, compassion and selflessness that are important.  The people who challenge us to do our best, to learn, to grow, to overcome are those who deserve our gratitude.  The people who strive to do whatever they can (no matter their limitations), those are the people to respect and emulate. The people who make us feel good; who make us sense our worth, and help us become better people should be idolized. 

So a smile and hug that a little child gives makes them a valuable part of society.  The prayers or kind word from a grandparent or the little old lady who lives next door makes them important.  Even the life of a crotchety, old bum can be used to help us develop into a better person ourselves.  Their contribution may not be direct; but it doesn’t mean that it is less necessary for our lives. 

The bible says that we were created in the image of God and therefore each of us is important and of value.  It’s easy to forget that or overlook it.  It’s good to remind ourselves of this fact.  It’s true of others and it’s true of us as well.  Our society may try to tell us differently; but that doesn’t mean those voices are correct, no matter how loud they may shout it.

So for this day, do the best you can on whatever you are attempting to do.  Remember you are valuable and important no matter what you can contribute.  Be the best person you can be and realize that for today, that is enough.

Friday (12/18/2015)

Update:

I’m back up on two legs!!! Well, sort of!  Although the steroids have not yet kicked in enough to totally eliminate the pain in my residual limb when I wear my prosthesis, the pain is reduced enough to begin wearing my leg and doing some limited standing.  I’m not supposed to try walking yet.  I’m supposed to take things slowly as my body gets used to the leg again.  My muscles, tendons, and joints need some time to strengthen and loosen up again.  With only a few modifications we were able to use the temporary socket that was made for me back in January 2015.  Over the next ten days or so the steroid should fully kick in and we’ll see what percentage of relief that I will actually get from it.  In a week or so I’ll go back to the prosthetist for more adjustments as I get used to using a prosthetic leg again.

One of the difficulties for my prosthetist is we don’t know exactly what is causing the pain so how do we prevent it?  Usually the socket is molded to be a bit tighter here and there and looser in other spots depending upon how it feels. We may find that my current socket works well when the steroid is at full strength.  If it doesn’t seem right, we may try a different support system to see if that helps.  I’ve been using a pin system, but we might try an elevated vacuum, etc.   Anyway, it is a wonderful feeling to stand up again. 

This is SO EXCITING to me!!!!  What an awesome early Christmas gift!

Wednesday (12/16/2015):

Update 

And so it begins…

Yesterday, I traveled to Rochester, MN to the Mayo Clinic to have a nerve block in my leg (left common peroneal nerve, behind the knee).  It’s about a 2 ½ hour drive, plus up to another hour to park and get to the right building and floor.  My friend, Rob, has been riding “shotgun” along with me for the last few trips over.  I arrived about 30 minutes before my appointment but was quickly taken back to be seen.  Without the normal intake questions, the nurse said the doctor would be there in just a moment.  Seconds later the doctor showed up and immediately began to apologize.  He said that he wasn’t qualified to do the procedure, nor did they have the proper equipment to do it in this department.  My frustration washed over me; but I responded politely.  I did express my disappointment since a very similar event occurred when I had the original nerve evaluation and temporary block put in.  I had even questioned the scheduler when the appointment was made.  Sigh!!!

I couldn’t get too upset because that morning at breakfast I’d prayed, “Lord, I don’t know if getting this nerve block is the right decision.  If it is not, please stop it from happening.  Don’t use a car accident or anything like that; but if I shouldn’t have this done, I don’t want it.”  I just figured God answered my prayer, although I would have preferred not wasting the six plus hours getting there and back again.  The doctor apologized again and said he had already voiced his displeasure and attempted to fix this reoccurring hole in the system.  {Note: Part of the problem is that this procedure requires an Ultrsound that can see nerves.  Apparently this is a very specialized piece of equipment that shares its name with the more common variety, hence the confusion.}.  I was told that scheduling a new appointment would take several days since they had to “triage” the appointment.  Whatever!  I was slightly disappointed but calm and content.  It is amazing how long this process has become.  What’s a few more weeks, I guess.  And I did ask God to stop me from having the procedure if it wasn’t the right thing to do and He stopped it, so there you go!

I gathered up my buddy from the waiting room and we headed for the elevators.  It took us awhile to find a car empty enough for me to roll onto without crushing too many toes.  Jammed in the elevator as we descended, my phone began to ring in my backpack.  In the crush of bodies, I ignored it.  As we were exiting the elevator, it rang again and I decided to answer it.  The woman on the other end was from Mayo and apologized again for the botched appointment and asked if I was still in the building.  She asked if I would wait for her to come down.  She wanted to personally talk to me.  I told her that I would wait.

After we had waited for 15 minutes, she called back and told me she was delayed because she was attempting to get me immediately rescheduled so I wouldn’t have the wasted trip.  She asked me to wait a bit longer.  Sure, why not?  After another 15 minute wait, I got another phone call from a colleague of the lady I had been talking to.  She told me that Jessica was on her way down but left before finding out that I had been rescheduled.  I was given the building name and the check-in data just as Jessica arrived.  She asked with a smile, “You got your appointment, didn’t you?”  Jessica apologized again and gave me a free parking pass and gift card for the Mayo Café.  Cool!  Party gifts!

I made my way to the new building, department, doctor, and hopefully the correct piece of equipment.  I was taken back almost immediately and within a few minutes I was on the table having the procedure done.  The pain clinic doctor took a lot of time talking with me before and after the procedure.  He said that with my previous response to steroid injections in my back and the results of the temporary block performed on my leg that he felt there was a strong possibility I would find relief from my pain with this procedure.  The Lidocaine took immediate effect and numbed the leg from the knee down.  I found out that numbness would only last a few hours.  The steroid may take up to 10 days to fully kick in, if it is going to work.  Based upon my previous experience with steroids, he said I could expect similar results of 3-4 months relief.  Nice!  The doctor also talked with me about three other options to consider if this procedure didn’t work.  He also warned me about three other procedures that he said to avoid at all costs because they probably would increase my pain.  I REALLY appreciated the time he took with me.

It was amazing to me that I was able to have the procedure done at all on the same day.  Getting the right two doctors, a nurse, and the right equipment together at a moment’s notice was an answer to prayer.  My buddy thinks that since I didn’t blow up in anger when told of the botched appointment, that they went out of their way to make it happen for me.  I think that is probably true, along with the fact that I wrote a very firm letter expressing my frustration the last time my appointment was botched even worse.  They didn’t want to get another one of my letters!   LOL! 

It is obvious to me that God superintended it all and made it happen.  I’m very grateful that God gave me the peace of mind to remain calm and to trust Him throughout the day. 

I think the answer is “No”; but I’m going to check to see if the Pain Clinic here in Eau Claire has the equipment and training to perform any follow-up nerve blocks that may be needed.

So this morning, the pain isn’t totally gone but it is greatly reduced.  In a couple more days I should find out if steroid has kicked in fully and the pain is reduced enough to wear a prosthesis again.  If not, there is hope that other options may be available.  I’d rather that they find out what is causing the pain and fix it rather than just covering up the pain; but this is a start.

Perhaps I’ll be walking again in the coming New Year.  I think I’ll make that a New Year’s Resolution.  Hopefully that is one resolution that I will be able to keep!

Philippians 4:6-7 “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

Thursday (12/10/2015)

Update:

After discussion with the surgeons at The Mayo Clinic in Rochester, I'll be receiving a steroid injection in the perineal nerve (behind the knee) next Tuesday (12/15). The idea is to see if this will give me relief of pain for any reasonable length of time. If this works, I could begin wearing a prosthesis and rebuilding my muscle strength so I could walk again. It is certainly not a permanent fix but may be the best solution for me at this time. The orthopedic surgeon did not see any structural changes that needed to be made after seeing the MRI results and examination. So currently surgery is out. So no real definitive answer; just moving forward towards a POSSIBLE solution

If it doesn’t work, there isn’t really any ‘Plan B’ at this time.  The doctors have been unable to find any explanation for why I have the pain that I do.  From the exams and tests, everything looks normal, so there is nothing to correct. In fact, I was told by the orthopedic surgeon that my residual limb looks like my surgeon did a perfect and beautiful amputation back in December 2013.

If the steroid injection does work, my leg from the knee down will probably be numb (feels like the way your lips do after the dentist uses Novocain).  Numbness in the limb creates an increased risk of developing sores and makes getting a good fit with the prosthesis much more difficult.  This injection will be a test to see how long the reduced pain lasts.  Hopefully it would last a few months at least; but only time will tell.  This would require return trips in the future to renew the nerve block as needed.

After my appointment with the surgeons, I was trying to set up the injection appointment and found that the business office had flagged my account requiring “prior insurance approval.”  In the past, my insurance company had required that I take the orders from the doctors in Rochester back to my doctors in Eau Claire for them to put in the request.  My insurance company wanted someone in my network sign off; although all of them are Mayo system doctors and my insurance is from Mayo too (see the October 13, 2015 update for background).This complicates getting anything done and adds additional time to the process.  But those are the rules by which the game is played, so that’s what I was going to do.  By the time I got back in my vehicle to head home (30 minutes later), someone from the Neurology department called to say she had my injection appointment made.  What???  She told me that their business office called and somehow got my insurance company to give them approval directly, so my appointment was set for next Tuesday.  Wow!  I cannot explain that except as an answer to prayer!

A funny coincidence occurred while I was waiting for my appointment.  The waiting area is huge but was sparsely filled on Wednesday.  I got there early, so I ended up waiting 45 minutes or so.  A nurse would come from one of several hallways and call the next patient’s name.  At least the first seven or eight names called were all “Steve.”  If this was a ball game, the referees would have penalized me for “false start” every time “my” name was called.

During my wait my back started hurting, so I found a chair to hold onto so I could stand up for a while.  I was facing the reception desk which was about 15 yards away.  I noticed one of the receptionists started staring at me and began walking my way.  As she approached, she called out, “You can’t be doing that here!”  What?  “You can’t be doing that here!”  I thought maybe there were rules about amputees standing up because they were afraid of a fall risk.  I wasn’t certain what I had done so I asked, “What am I doing wrong?”  She said, “You are wearing that bright red UW Badgers’ ball cap in Minnesota.”  She got me good!  When the nurse eventually took me back to examination room, the receptionist told the nurse not to put me in any of the nice rooms because of the hat I was wearing.  LOL.

I have been asking for wisdom for the doctors and for me while we plan the next step in my journey.  Once again, things took an unexpected turn.  Yesterday, the orthopedic surgeon said he thinks it is a nerve problem and the neurosurgeon said he thinks it is a bone problem.  By now I should expect the unexpected.  My case was confusing enough that my doctors in Eau Claire sent me up the chain to the doctors in Rochester.  Yesterday was proof to me that I remain an enigma to the medical community at large!  My neurosurgeon told me that I was a unique puzzle that doesn’t fit normal expectations.  That’s not really a distinction that I wish to maintain!  I’m hoping for a bit more normalcy and a big reduction in the number of medical visits that I need.  As we quickly wind down this year and head into a new year, that’s my hope and prayer.  And if God doesn’t choose to grant my prayers, then I ask that He continue to provide the strength and peace for me to continue on forward through whatever He brings my way. 

Thursday (12/3/2015)

Update:

Today is my Second Ampuversary.  On this day in 2013, I had my left leg amputated below the knee in order to save my life.

I cannot say that the last two years have turned out as I had expected.  On the contrary, I’ve been surprised numerous times by the twists and turns that life has thrown at me.  Despite all of that, I am happy to still be alive and continuing my journey--taking one step at a time.

Speaking of steps, in less than a week I have an evaluation with the surgeons at the Mayo Clinic in Rochester.  I’ll find out from them what chance I have of walking with a prosthesis again.  It’s taken a long time to get to this point.  I’m hoping that they’ll tell me that they believe another surgery on my leg (a revision) may alleviate my nerve pain issue that keeps me from wearing a prosthetic leg and walking.  It’s possible that they may say that they don’t see any surgical option and I may be stuck in the wheelchair for life. Most likely, surgery will be recommended with the HOPE that my pain will be substantially minimized.  Despite the wonderful advances that have been made in health care, no one can guarantee results.

The wait (not walking much since December 2014 and being in a wheelchair full-time since February 2015) along with doubt about regaining my ability to walk has been emotionally challenging, especially over the last two months.  I’ve been struggling with my weight again.  Everything that I do ratchets up my back pain. I have to balance the emotional need for activity against the physical cost it will have on my body.  I have to continually battle a dark cloud of doubt and instead continually reach forward in hope.

While having to give up many things, I’ve strived to maintain whatever I could.  Despite my best effort, things have continued to close in on me.  I can relate to older adults as they first lose their health, then their job, their home, their car, and finally their freedom.  It is never easy to watch your world shrink a little smaller when mentally you want to be out enjoying life.  We often chide teenagers who think and act as if they are indestructible.  But adults live under a somewhat similar delusion that they will remain healthy and active until death takes them.  Like I said before, my last two years have not gone as I imagined.

With all that said, I am still enjoying life.  I’m thankful to be alive.  I’m grateful for all the help I’ve received along the way.  Peoples’ prayers, notes of encouragement, acts of kindness, and honest concern have meant so much to me.  My activities may have diminished; but the gratefulness to everyone around me has grown and continues to swell within me.  I have a greater appreciation for the little things that I took for granted before.

I don’t know what the future holds for me.  But I am grateful for God’s support and strength, for my wife’s and family increased assistance, and for my friends.  I will strive to maintain my positive outlook on life and seek to be a blessing to those I encounter as much as I am able.  I hope that I’ll be regaining mobility in the coming months; but if I don’t I’ll figure out a way to accept the “new normal” and continue on with my life.

So, today marks two years down and the rest of my life to go!

Wednesday (11/18/2015)

Update: 

I’m quickly coming up on the second anniversary of my initial hospitalization and amputation.  I entered the hospital on Thanksgiving morning 2013 and my leg was amputated on December 3, 2013.  So I’ve been reflecting on the past two years. 

Numbers:  I just counted up the number of medical appointments (labs, procedures, doctor visits, etc.) that I’ve had in the last two years: 187.  Wow!  One hundred eighty-seven appointments in two years!  That works out to one appointment just under every four days (or just over seven appointments per month).  That number is mind boggling to me!  And it appears to me that number will continue to grow about the same rate during the next year.  I currently have over twelve doctors and medical practitioners working with me.  I appreciate all that my medical team has done for me so far.  I especially want to point out two people have worked diligently with me, my Physiatrist, Dr. Schmidt, and my Prosthetist, Leah.  These two ladies have bent over backwards to help me over the past two years.

History: As I think back to Thanksgiving Day 2013 (the day I was taken to the Emergency Room), I am thankful to be alive.  I had a massive infection raging in my bloodstream.  The doctors told my wife if she had delayed getting me to the hospital by even an hour, I probably would have died.  By the grace of God, the amputation, a boat load of antibiotics, and awesome medical care, my life was saved.   Since that time, it seems that most things have not gone easily for me medically.  I seem to be a living example of both Murphy’s Law (If things can go wrong, they will go wrong) and at the same time, the grace of God (after all, I’m still kicking and screaming).  I’ve had eye trouble (macular degeneration and cataracts, etc.), kidney issues (a congenital problem repaired surgically), liver problems, reactions to medications, lower back and sciatic nerve pain, fears of my remaining foot going bad, getting my blood glucose levels under control, carpal tunnel and shoulder pain, along with a host of other minor issues.  Medically I’ve been a mess and yet I’ve remained fairly active and have regained much of my independence.  For ten months, I was able to walk with a prosthetic leg until I developed a hypersensitive nerve in my residual limb.  Since February 2015, I’ve been in a wheelchair full-time seeking answers and possible solutions to get me walking again.

Attitude:  From the very start, I’ve been thankful for God deciding to give me extra time here with my family and friends.  I determined that I would stay positive.  I realized that no one likes to be around angry and bitter people, so I wouldn’t become one.  I’ve had to become creative figuring out how to do things in new and different ways. Determination, persistence, and good old fashioned hard-headedness have become a part of my daily life.  I have an independent streak that pushes me to do everything that I can do for myself.  I’ve learned how to get me and my wheelchair loaded into my truck by myself, so I can still go do things and stay active (including taking myself to most medical appointments).  I strive to remain “wild at heart” and go to the gym, go hunting, and race down my wheelchair ramp as fast as I can.  I’ve had to purposefully feed my mind good positive, encouraging thoughts.  I regularly read my bible and other solid, uplifting books to keep my mental balance.  I choose to focus upon what I can still do rather than be miserable focusing upon what I can no longer do.  Overall, I’ve done a good job with my attitude, rarely sinking towards depression or anger at my situation.  I’ve had to learn about patience at a whole new level.  I still struggle asking for help and being the recipient of others’ help (I’m used to being the guy who helped others).  My limitations do frustrate me at times and I have found it is hard to give up certain things that I used to enjoy (walking in the fall leaves in the woods, shoveling my own snow, many household chores, holding down a job, etc.).  The extra effort that it takes to do the simplest tasks is surprising.  Because of that I am limited to what I can do and how often I can do it, needing to rest and recharge between events.  The mental battle has been greatest challenge that I have faced.  So far, I am satisfied with how I’ve done.  At times I could have been better, but overall I think I’ve done well.

Some Lessons Learned:  1) I’ve been surprised at how long it takes to fully recover from surgery and hospitalization. I used to think that when people got out of the hospital that they were fully recovered—now I know better.  2) It’s true that no matter how bad I think that I have it, I can easily find someone who has it worst.  My struggles are real but many fine people have significantly greater challenges to face.  3) My recovery and life is officially a marathon and not a sprint.  I tend to want to go-go-go.  If there are five things on my schedule that I could do, I want to do six instead. Now I have to pick and choose what I do and accept that I cannot do it all.  My pace of life has now changed.  As my wife has said, much of my time and energy each day is taken up with the “business of living” so I can no longer do everything that I want and I certainly cannot do it at the speed that I want.  4) Life is good and worth living despite the limitations.  My life isn’t over because I can’t do certain things any longer.  I have to learn to enjoy new things and enjoy the things that I can do just a little bit more.  Being satisfied with reality can be difficult if we don’t like the reality we face.  I’m still in the process of determining all of that!  5) “Everything takes longer than it actually does.”  Medical care often moves at a snail’s pace.  There are many hoops to jump through and a process that must be followed.  We cannot just skip all the middle junk and go to where we all know this is headed.  That would be cheating!  Waiting for the next appointment that will move you forward is excruciating.  It seems like “the better the doctor, the longer the wait” is true.  Try getting two world-renowned doctors together on the same day can take months of waiting.  Oh, yeah! Patience!  I thought that I had learned patience last year.  This year I must have signed up for the advanced course! 6) I would not have made it this far without my faith and trust in God.  He definitely is my rock and the anchor of my soul.  I would have been overwhelmed by the events of my life over the last few years without His constant support and strength to lean upon.  Some people say, “Religion is a crutch.”  Well look at me!  I need a crutch and a prosthesis too!  I am not ashamed to say that I need God to help me each step of the way.

The Future:  Right now, it looks like I will be having surgery to revise my amputation in an effort to allow me to resume wearing a prosthetic leg.  I should find out about that at my next appointment in Rochester, MN at the Mayo Clinic on December 9^th.  I’m guessing that the surgery will be sometime next spring with a month or two recovery before being fitted with a new prosthesis (which will mean that I will have spent over twelve months in a wheelchair).  It seems like a long time since I’ve last walked (Feb 2015).  If this surgery is successful, then I should be walking a couple of months after it.  There is a chance that the surgery won’t correct the hypersensitive nerve and I may never walk again.  Only time will tell.  Anyway, we’ll be giving it our best shot!  I’d appreciate your continued prayers especially for wisdom for the challenges of each new day.  I’m grateful for all the support I’ve received from a multitude of people in a multitude of ways (especially thankful for my wife and family).  Thank you!  God bless!

I recently quipped on Face Book: “Since I had my left leg amputated nearly two years ago, I've got to say that I always start my day off on the right foot.”

The picture is me practicing shooting my .270 from the truck.  I recently got a handicap permit that makes it legal for me to hunt from the truck.  A landowner has a spot for me to try this deer season.  It is very strange shooting from a vehicle but the door provides a solid rest to shoot from.

Saturday (10/24/2015) Video

Update:

Here's my latest video.  I could just sit back and allow my limitations to rule me OR I can fight back and squeeze whatever I can out of life.  

I also spent Wednesday of this past week with several firefighters teaching fire prevention classes to elementary students.  It was awesome fun to be with the kids and it allowed me to contribute something.  Sometimes it is the feeling of not being as useful as I used to be (prior to my disability) that is so crushing.  This was good therapy for my soul.   Here's a picture of me with one class after the presentation.  During the presentation in the smoke house most students didn't realize that I was missing my left leg.  I was able to stand up, half hidden by the stove.  It wasn't until afterwards when I got in my wheelchair that they found out.  The kids were surprised and wanted to know about my missing leg.  Interacting with the kids and their teachers was so much fun!

Tuesday (10/13/2015)

Update:

Those on Face Book, know that Monday (10/12) was an emotional roller coaster for me.  I was scheduled for a consult appointment with Dr. Robert Spinner at the Mayo Clinic in Rochester the following day (10/13).  About 2:00 p.m. on Monday, I received a phone call saying that my insurance company had denied to authorize the appointment because it was “out of network.”  I was advised that I could contact my insurance company to see if they would reverse their decision, or we would need to reschedule.  Those of you familiar with medical scheduling know how long you can wait for an appointment to become available.  There was a cancellation and I was given this appointment just a few days ago.  I didn’t want to lose it and have everything delayed.  I’ve already been in a wheelchair since February.  I want to make forward progress and get back to walking as soon as I can!  When my wife called the insurance company, she was informed that my local Physical Rehab Doctor would have to call them to request the appointment after she had contacted the local neurosurgeons to ensure that my case could not be handled by them.  I needed the experts at the Mayo Clinic in Rochester because my local medical team isn’t able to take care of this issue (I’ve been uniquely challenging all along since this began).  If my doctor called before 4:30 p.m., there was a chance that the insurance company could review the case and authorize the appointment so I could keep it.  By the time my wife got this information, it was after 3 p.m.  Do you know how unlikely it is to be able to contact your doctor and get them to confer with other doctors and then call your insurance company in less than 90 minutes?  I knew it would take a miracle, so I asked friends to pray.  My Physical Rehab Doctor, Dr. Schmidt, and her nurse, Mark, did extraordinary things and got the call in on time!  Wow!  And the insurance company changed their ruling and authorized my appointment about three minutes before their office closed!  Double Wow!  I was an emotional wreck waiting to see what would happen after that first call.  I’m grateful for my wife’s labor in chasing this down and getting it done.  I am also very grateful to Dr. Schmidt and Mark for making time in their busy day to get this accomplished under such a deadline. 

So on 10/13/2015, I had a consult appointment with Dr. Robert Spinner, head of Neurologic Surgery at Mayo in Rochester. After examination, he feels that my problem is more related to my fibula rather than a nerve issue directly.  He is recommending an MRI to determine exactly where the nerve and bone structure lies, etc.  Dr. Spinner then wants me to return for a joint consult with him and Dr. Thomas Shives, orthopedic surgeon who does many of the amputations there at Mayo.  At this point, Dr. Spinner thinks that my fibula needs to be shortened which would take pressure off of the nerve that has caused me so much pain.

Although this is a 180 degrees change in thinking, it makes sense.  When I had the Ultrasound and nerve block done, since the pain went away I was told that it proved that it is a nerve issue.  Dr. Spinner said that the specific nerve block that was done could also have numbed the bone, etc.  So the Ultrasound was not conclusive evidence.  He did say that the MRI will give us the evidence that we need for a conclusive treatment plan.

So now it is scheduling the MRI and then the follow-up joint consult.   I hope they can be done soon, but I am expecting that it will take at least a month or two to get them finished.  If we go to surgery, who knows how far out that will be scheduled.  Right now, I am mentally hoping that I could be walking by next spring if all goes well.

Let me tell you my adventure driving to Rochester today.  After picking up a friend to ride along with me, I decided to try a different route to get to Rochester.  It took longer than I expected.  Then when I got to the parking garage, the thing was filled to the top!  There were no handicap spots open and I had to wait for car to pull out before I could squeeze into a normal slot.  I was barely able to get my wheelchair out.  Then someone blocked the crossover to the elevator.  We had to fold the chair and I had to hop between cars (I’m not supposed to do that!).  We raced into the building taking a wrong turn along the way.  When we arrived on the eighth floor, I realized that I wasn’t told which eighth floor desk to check in with.  Oh my!  With all of the delays, I still managed to check in for my appointment with one minute to spare.  Not fun!  After the hassle to get the last minute approval, I certainly didn’t want to miss the appointment!  I don’t want to ever cut it that close again!  What a goof ball I am!  I’m thankful for all the answered prayers that allowed this to happen today.  With all that, it was a pretty drive with a few spots of color in the foliage.  Hopefully, the fall foliage will be in full color the next time I drive over.  

Friday (10/9/2015)

Update:

Back on September 25, I had my ultrasound appointment in Rochester, MN concerning the hypersensitive nerve in my residual limb that prohibits me from wearing my prosthesis.  The doctor found that my nerve was “abnormal” from mid-thigh down to the end of my limb with several places that were “extremely abnormal.”  This result prompted my Physical Rehab doctor to refer me to a neurosurgeon for examination.  I’ve been waiting the last couple of weeks to hear from neurosurgeon to set up the appointment.  Frankly, I was starting to get antsy waiting for the appointment to be set up because I assumed I’d have to wait a month or two to get in to see the doctor.  So I was pleasantly surprised when I got a call this afternoon that I have an appointment for next Tuesday!!!  Wow!  I had just had lunch with a couple of buddies and asked them to pray for me concerning this appointment and the issues I’m having with my leg.  That was a quick answer!  I think I’ll ask them to pray for me more often!!  LOL.  So next Tuesday, October 13^th, I have an consult appointment with a world renown peripheral neurosurgeon.   We’ll see what other evaluations and treatment recommendations he has to offer for me.  I view this as the next step on my quest to walk again.

Last week I posted on Face Book that I had swept and mopped my wood floors from my wheelchair.  I’ve done it before and it takes a fair amount of energy.  This time a few hours after I was done, I got a back ache.  By the next morning I was in a lot of pain.  I had to lay flat on my back on the floor for several hours to ease everything back into place.  I’ve taken it easy since then (not going to the gym) to let it heal.  What a mess I am when just a little twisting throws me out of whack!

Since my amputation, I’ve needed more sleep each night than I used to need.  This past week, I’ve had to get up earlier than I am used to doing.  By dinner time the other night I was so weary that I told my wife that I might go to bed as soon as we finished eating because “I ONLY got seven hours of sleep last night.”   Some of you probably hate me right now because you are forced to get by on much less sleep.  If so, I hope you get a few extra hours sleep this weekend!

One of the fun things that I have been able to do this past week is to help out the firefighters that I serve as chaplain by doing fire safety presentations for school children.  That has been an awesome time!  My amputated leg confuses the little ones but after I tell them that I have “a robot leg at home; but it’s broken right now so I cannot walk and I have to ride in this wheelchair” they think it’s pretty cool.  One little guy was still very concerned and kept whispering to his teacher.  I couldn’t hear him but I hear her answer, “No.  He isn’t hiding his foot.  He really doesn’t have one.”  Kids are awesome!  I’m grateful that I have had the opportunity to be with them.   October is Fire Prevention month, so change the batteries in your smoke detectors and talk to your family about what to do in case of a fire!

Thought for the Day:

After seeing the news recently, I got thinking about the 10 Commandments.  I smiled at myself as I realized that I’ve started having trouble with the one that says, “You shall not covet your neighbor’s [things].”  I’ve never been overly materialistic and never really considered that I had a problem with this one.  I’ve never really looked at others and wished I had their stuff, so I’ve not felt the sting of disobeying this one overly much.  But lately I’ve wanted other people’s legs!  I look longingly at others who are able to walk either with their God-given legs or on prosthetic ones.  I’m grateful for what I am able to accomplish in my wheelchair and for all the mobility and freedom that I have; but I’d really like to walk in the fall woods, mow my own grass and shovel my own snow this winter.  I want to ride my bicycle, walk into stores, and climb stairs on my own two feet (even if one of my feet is metal and composite materials).  I want to get back to the two-legged life!

I thought that after my amputation that I had the concept of patience down pretty well.  Now as I continue to remain in the wheelchair fulltime since February, my lack of patience is rearing its ugly head again.   Early this year, I had hoped that I would be walking by the summer.  Then it was by fall.  Now it is by Christmas.  But honestly it might be much longer in coming.  And perhaps it won’t happen at all.  I may never walk again or it might be years from now.  I don’t know.  Only time will tell.  So ultimately I have to put all of my desires aside otherwise I will go crazy, becoming unhappy and bitter.

Contentment:  The state of being mentally or emotionally satisfied with things just as they are; a feeling of calm satisfaction.

There is nothing wrong in wishing and working hard towards a better future.  There are some things that we MUST achieve and some changes that HAVE to be made.  But for most things, there is a line that we shouldn’t cross in striving too hard and giving up too much in pursuit of them.   There are some things that we cannot change or that would cost too much of us to achieve.  Learning contentment and striving for a calm satisfaction with the status quo may be the best thing that we can do for ourselves and for our families.

So I am choosing to remind myself to be content and to be at peace with my circumstances.  I hope that someday that I’ll walk again; but I’m not going to waste a lot of emotional energy craving for that day to come sooner than it will.

What are you allowing to damage your calm?

Friday (9/25/2015)

Update: 

This morning I had a doctor’s appointment in Rochester, MN (a little over 2 hours away).  [The picture is of me sitting with the Mayo brothers outside one of the numerous buildings of this ‘little’ clinic they started.]  Today I had a specialized ultrasound to look at the nerve in my leg that has been causing me pain.  This extreme pain is why I haven’t been able to wear my prosthesis for the last eight months or so.  The doctor found that my nerve was “extremely abnormal” in several places and “abnormal” in numerous places all the way from the end of my limb up to the mid-thigh.  He injected a temporary nerve block (lasts 4-8 hours) just above the back of my knee to see if this nerve is what is actually causing my pain.  After the medication took affect, I was 99% pain free in the leg.  So that is pretty conclusive.  Unfortunately, because of the abnormalities and how far up the leg they go, further evaluation is necessary.  I will probably be referred to a neurosurgeon for his treatment recommendation (surgery). 

My doctor today told me I’d probably be referred to “a world renown neurosurgeon” here in Rochester.  I’m thankful to get the best care possible; but for once I’d really like to have something wrong with me that even the guy who graduated from med school at the bottom of his class could easily fix.  LOL.  And it is funny how the leg feels when it is numbed.  Very strange!  If you’ve ever had your lower lip numb after going to the dentist, it feels a lot like that except that my leg isn’t drooling.  J 

These abnormalities have several potential consequences.  For instance, my left leg has obviously atrophied since last year.  It may have been the result of it not being exercised since I have not walked with it for months, or it may be because the damaged nerve is not functioning properly and the muscle mass is withering away.   At least there were no signs of tumors, etc.  There are no clear answers as to why this nerve is so damaged.  It may be yet another consequence of diabetes.  I would guess that the diabetes weakened the nerve and then my prosthesis kept pounding that nerve until it was damaged.  Since we don’t know exactly what caused the damage, it’s possible that it could continue unchecked for some time.   Nerves control the use of the muscles, so it’s possible that I might lose even more functionality in my leg.  Yep, the possibilities are really sobering.

This appointment didn’t go as I had imagined.  I had hoped that a simple permanent nerve block was all that it would take and I would be back walking within a month or so.  If we are really talking surgery, then it will add additional time to schedule and then to allow the wounds to heal before I can strap a leg on again.  Now I’m guessing that it will be Christmas at the earliest before I’d be walking again.

After all the things that have gone wrong for me over the last couple of years, I was hoping that I’d get a break and this time all I would have to do is hit “the Easy Button”  and my problem would be fixed.  Apparently no such luck. 

After the appointment, I’ve got to admit that I got a little teared up and had the shakes for a moment as the reality of what I’m probably facing sunk in.  After taking a few deep breathes and turning my mind from possibilities to what I do know, I settled down again.  Because in the long run, I know that it will be alright.  Whatever happens, I’m at peace with where this all leads.  I may not like it; but then again my anger isn’t going to change a thing.  AND I have confidence in God’s leading.  I don’t understand why things like this keep happening to me; but I do know God is constantly watching over me.  I have to believe that He has a purpose in allowing these things.  Whether I ever understand what it is accomplishing is beyond the point.  My goal is to keep my focus upon Him and just do the best that I can under circumstances.

So it appears that I’ll be making a number more trips to Rochester in the coming months.  It’s a pretty drive and the Mississippi river bluffs will be beautiful as the leaves change colors.

I appreciate your prayers and well wishes.  Thanks for your support!

Thursday (9/10/2015)

Update:  

I’ve just published two new videos on You Tube.  I’ve spent several days fighting to get these done (camera battery, memory card, upload sign in failure).  You name it.  It happened.  Whew! Glad to finally be done!

The first video is a summary of what’s happened in the last two years concerning my prosthesis and walking.

The second video is me talking about my uncertain future, especially if the upcoming treatment doesn’t work as planned.

Wednesday (8/26/2015)

Update:

I got a call this morning from Mayo in Rochester that my appointment for tomorrow's ultrasound and nerve block on my leg is cancelled. It's be rescheduled for September 25.

Very disappointed to have to wait another month in my search for a solution to walk again. Fall is my favorite time of year. Looks like I'll be wheelchair bound through it. Sigh!!!

The late notice for the appointment cancelling is really unacceptable. The new appointment showed up online five days ago. I thought it was a follow up appointment that had been added, not a replacement. So somebody knew about it days ago but they didn't call to let me know until the day before. My wife had all of her clients for Thursday moved to other days. This really has caused a lot of work for her secretaries and with such late notice her workday tomorrow won't be filled now. I guess I should be happy that they called at all and we didn't make the two hour trip for nothing.

My computer died today as well, so it's been a frustrating day. Oh well. Looking for a better tomorrow!

x

Tuesday (8/25/2015)

Update:

Last Thursday, I had a consultation at the Mayo Clinic in Rochester concerning the hypersensitive nerve in my residual limb.  When a doctor there says he’s only seen one case similar to mine before—well that makes me “quite special.”  I’d rather be a boring, “we’ve seen 100’s of people like you before” kind of medical issue.  But despite all that, he came up with a plan.  This Thursday (8/27), I return to Rochester to have a specialized ultrasound done on my leg and then have a nerve block on the affected nerve.  I asked if I could have it done in Eau Claire (10 miles from home instead of 100) but was told that there are only two doctors capable of performing this procedures and both work in Rochester.  So okay then, I’m headed back across the river on Thursday.

At my consult last week, the doctor noted that the affected nerve at the end of my stump was enlarged and he could actually feel it with his fingers all the way up past my knee.  Of course all of his poking and prodding was necessary but hurt terribly.  And he “woke the sleeping dragon.”  Since I’ve stopped wearing my prosthesis months ago, the nerves had calmed down and I rarely had any pain in the leg.  Since that appointment last Tuesday, I’ve had some serious nerve and phantom pain.  The worst day was when it felt like someone was using pliers to pull my toe nails out of the non-existing foot.  You just can’t have much more fun than that!  Wow!

If the nerve block works, the plan is to build a new prosthesis for me from scratch.  This one will be radically different from the others I’ve had.  It will be made so that I carry most of my weight up on the thigh.  I’ll have a fairly normal looking prosthesis below the knee.  But hinged brackets will go up each side of the knee and attached to a thigh lacer (like a corset).  Bigger and bulkier than anything that I’ve had before, but if it gets me back to walking it will be worth it.

One of the dangers of considering this nerve block procedure is that it may not only stop the pain but may cause my entire leg to become numb.  That’s dangerous because I won’t be able to feel if something is rubbing or causing skin breakdown.  If you feel that you have a pebble in your shoe, you stop and clean it out before it causes a blister or a sore.  If you don’t have any feeling in your foot, lots of damage could be done before you discover that anything is wrong.  For me, that might mean more surgeries, another amputation, or just being off the leg for a month or two to let it heal again.  I asked the doctor about this potential risk.  He replied that it was either try this procedure and manage the risk as best we can, OR plan to stay in the wheelchair and not walk again.  I’m electing to take the risk and hopefully get to walk again. 

I’ve got to say that I’m apprehensive about it all.  I really don’t know that much about what’s going to happen.  I don’t know what limits the new prosthesis might have.  Everything is up in the air until they go in and determine exactly how far up the nerve is irritated/damaged.  One of the things that most amputees have to deal with is decision making without knowing all the facts.  No matter how much research that you do and how many doctors you’ve consulted, with the human body and your unique situation, you never really know what is going to happen and how things will turn out.  People considering elective amputation understand this all too well.  They may have had dozens of surgeries on their foot/ankle/leg and been in pain for years before an amputation is recommended.  There are a lot of unknowns when faced with this decision.  I know what life is like now and I can guess at how this might improve my life; but I will never really know until I have the procedure done.  Only afterwards can I really effectively determine if this procedure was the right thing to do.  If you choose incorrectly at the barbershop when trying a new hairstyle, at least you know if you hate it that your hair will grow out and your can fix it in a few weeks; but an amputee faces decisions that are often irreversible.  These decisions are made on the best available information; but what works for one person may not work for another.  It’s a bit like playing high stakes poker.  You have to decide your course of action by looking at the cards that you’ve been dealt.  That’s all you can do and hope for the best!  So I’m praying for wisdom for me and the doctors as we feel our way forward.  I’m hoping to find improvement and get back to walking.

With my lower back pain and sciatic nerve issues, riding in a car has not been an easy thing.  The ten minute drive to Eau Claire is tolerable now; but last week’s drive to Rochester and back (just over two hours each way) laid me low for a couple of days afterwards with pain.  Last time, we went down the evening before and returned home the next day so I had some time in between to help loosen my back up.  This time we are going there and back all in the same day--I’m not looking forward to this return trip because of that.

On a positive note, I had follow up testing and a doctor’s appointment yesterday (8/24) concerning the kidney surgery that I had done in June.  My right kidney wasn’t draining properly and so I had reconstructive surgery done.  I was so glad to hear that right kidney is working well again.  Tests indicate that is draining well and the swelling in the kidney has gone down considerably.  That was good news to get! 

Thought for the Day: 

How well do you deal with the unknown?  How do you handle worry and anxiety?  Let’s face it; most of the stuff we worry about will never happen.  It is silly to get all worked up over nothing.  On the other hand, there are some things that we should be worried about—things that are serious and staring us straight in the face.  What strategies have you found to help you deal with the stress of those situations?

As a believer in God and Jesus Christ, I put my trust in Him.  I may not have all the answers and know all the details about what is going to happen; but He does.  I may be impotent and unable to change the outcome of what is transpiring around me; but He is not.   The world, circumstances, and fate all may be stacked against me; but God is for me.

On scripture passage that I memorized long ago is 1 Peter 5:7  “Cast all your anxiety on him because he cares for you.”

I had trouble remembering this verse, so I came up with a visualized memory clue.  When I would hear the scripture reference: 1 Peter 5:7, I made a casting motion like I was fishing and made the sound of the line going out and the bobber hitting the water—“ZZzzzz plop!”  That’s what we are supposed to do with the things that make us anxious.  We aren’t supposed to hang on to them.  We are to give them to God through prayer.  Let Him have them.  Give them to Him to deal with.  Cast all of our anxiety upon Him because we know that He cares.

Think about a lazy summer day of fishing at the pond.  It is one of those days when you don’t really even want to catch a fish.  You just need to get away and unwind.  Find a tree and put your back up against it and relax.  Once you throw the line in the water, you close your eyes and forget about the world and if you are lucky, you fall asleep and take a restful nap. 

That’s the picture that this verse reminds me of.  Let go of my anxiety--not because I am ignoring it and pretending it doesn’t exist; but because I’ve done the best possible thing with stuff that worries me.   ZZzzzz plop!  I’ve casted my anxiety onto God for Him to deal with them for me.

Now there is another picture of fishing that is the opposite of this kind of restful repose.  I remember as a kid throwing the line out and watching the bobber.  After a few minutes of inactivity, I couldn’t let it alone.  I had to wind the line back in and check the bait.  “Maybe I threw the bait off when I cast my line.  Maybe a fish nibbled my bait and I didn’t notice.  Maybe….”  As a kid, I did this over and over.  The poor fish never had a chance to take the bait because I couldn’t leave it alone.

Instead of casting my cares upon God and leaving them with Him; I let my anxiety get the best of me and had to reel my problems back in so I could look at them again.  That’s the natural response; but it doesn’t produce peace.  I’ve come to realize that my worrying about a problem never solves it—so I might as well cast my anxiety upon God and let Him deal with.  Relax. Trust. Rest.  Now that is my kind of fishing!