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!