Tuesday (7/3/2018):

I’m driving down to Indianapolis tomorrow (500 miles) in preparation for my reconstructive surgery on Friday (7/6).  The tibia on my amputated leg is pronounced (too long) and needs to be reduced, among other things.  I hate to be wheelchair bound for the rest of July and early August as I heal before getting a new prosthesis; but it has to happen for me to regain my comfort and mobility.

I’ve been an amputee for 4 ½ years now.  This will be my second reconstructive surgery following my amputation and the third summer that I’ve been severely limited in my activity levels.  And I had such high hopes for this year.  Oh, well!

After joining the “Amp Club” you find out that every person’s experience is different.  Some people seem to immediately find the “sweet spot.”  They have an amputation, get a prosthesis, and off they go without almost any other problems.   Others find themselves in a nearly constant loop of surgeries, procedures, fittings, in an endless attempt to regain their comfort and mobility. 

I fall somewhere in between.  I’ve had a few difficulties along the way, along with some very good times.  The beauty of social media for an amputee is that you find out that you aren’t alone.  You see the success stories that fuel your drive to continue forward, as well as finding out that there are others who are facing much greater battles than your own.

For me, being an amputee is a mind game.  Despite setbacks and failures, maintaining a positive outlook is a requirement to keep moving forward.  Every step is a trade-off.  Is this worth the time and energy it will require?  Will my investment pay dividends?  Am I wasting my time striving to achieve an unattainable goal?  The hard part is that you don’t know if it is unattainable until you’ve tried every possible solution.  Until then, every step along the way is just part of the road you travel. 

I’m beginning to understand that being an amputee isn’t about “arriving,” it’s about the journey itself. I may never arrive at the destination that I seek; I can’t wait until I get there to be happy. Instead I’ve got to remember to enjoy the journey itself. The breakdowns, detours, and road construction zones are never the most pleasant part of traveling; but they are a fact of life and you might as well learn to appreciate them as well.

Take a minute to read what John Maxwell wrote about success (and the happiness or satisfaction that comes with it).

www.johnmaxwell.com/blog/what-i-believe-about-success

Thursday (6/14/2018):

Update:

Only three weeks to go until my surgery to fix some structural problems with my leg.  I’m looking forward to having it done and seeing the results.  Hopefully, the outcome will be everything that I anticipate it’ll be.

I’ve found that a lot of my life as an amputee is what I call “the time in-between.”  It’s waiting for the next appointment, the next procedure, or the next surgery.  It’s waiting to heal so I can get a new socket made, so I can get active again, so I can make forward progress.  It’s severely limiting the number of steps I take in a day, or avoiding certain activities like walking on grass because it puts more strain on my limb than walking on a sidewalk.  It’s scheduling my daily activities around the limited amount of time that I can wear my prosthesis comfortably, and figuring out how to do everything else from a wheelchair.  It’s fighting pressure sores, blisters, and vacuum sores from developing.  It’s struggling to understand what changed and why I’m having difficulties when I haven’t knowingly done anything differently.

It’s playing the mental game of not getting depressed from repeated setbacks, of staying optimistic as we try something new yet again, and of not falling into the trap of comparing myself to other amputees who seem to be doing better than I am.

It’s about accepting the reality of my situation and my limits (I don’t want any limits!!! But it’s not up to me obviously).  It’s about maintaining a joy for life, contentment with my situation, and a positive outlook for the future.  It is about finding emotional balance despite the ups and downs that I experience.

And sometimes it is all easier said than done.

I’ve got to tell you that the worship service that I attended last Sunday really helped me.  Several points of the message and the closing song were especially meaningful to me.  It brought tears to my eyes, thankful that I’m not facing this alone, and being reminded that God hasn’t deserted me.  That kind of knowledge strengthens me for the daily struggles that I face.

“Events in our lives sometimes leave us feeling at risk, whether it be in a job situation that calls us to take a stand, in the severe illness of a loved one, in an unexpected tragedy, or in the breakdown of a relationship.  Any of these can be a storm in which we doubt God’s goodness.  We may feel God has left us to fend for ourselves….God has never promised our lives would be empty of pain, disappointment, or storms.  Anyone who tells you otherwise is not teaching about a true walk with God.  What God does promise are resources to journey through the raging waters.” (Darrel Bock, The NIV Application Commentary—Luke, p.237-8)

I can’t say that I understand why all this is happening to me.  In fact, I usually try to avoid the “Why?” question: “Why is this happening to me?”  I’ve discovered that it is better for me to focus upon the “How?” question: “Since I’m in this situation, how am I going to make it through?” It’s focusing my attention on what I am able to do (and enjoying it), rather than upon what I am unable to do (and being miserable).

I had one friend ask this week, after finding out that I was facing yet another surgery, “When will all this end and your leg be better?”  My reply was that I didn’t know; except that I know it will be all better and I won’t have any more problems when God finally takes me home to heaven. Until then, I’m just living my life as best I can, even in the time in-between. 

Wednesday (6/6/2018):

Update:

I had my regular appointment with my Retinal Specialist today.  For the last four and a half years I have been receiving monthly injections in both eyes for macular degeneration.  Just recently, we were able to spread the injections out to every other month.  I also have diabetic retinopathy, as well as cataracts (one of the side effects of the eye medication is cataracts). When this began, I had great difficulty reading printed material, and I had very poor night vision, and very little color vision.  Over time my vision has vastly improved; but it has been a long, slow, costly process.   Each eye appointment costs between $3,000-$5,500 (the medication used in the injections is very expensive and the diagnostic equipment is pricey too), so I’ve spent quite an impressive amount to maintain my vision over the last four years.  I’m fortunate that my swelling isn’t near the optic nerve so my vision is currently pretty good; but my eyes have been resistive to treatment and so I’ve had these injections each month just to keep my vision stable.  The cost didn’t used to be so high but the cheaper medication wasn’t effective for me, so we’ve had to switch to the most expensive.  I am very thankful for good health insurance that has covered the cost.

After my eye exam today, my doctor said that the swelling was down so I could skip the eye injections this month; and my next appointment isn’t for another two months!  Wow!  That is the first time that has happened since we’ve began treatment!  That’s a good feeling!  Nothing like NOT getting stuck in the eyeball with a needle to make your day!  Ha!  Honestly when I first started getting these injections it really freaked me out and I had to work hard to stay calm.  Now, it’s become common place enough that it isn’t too bad.  But getting to skip is still a great feeling!

My vision isn’t perfect; but I am very grateful how well I can see and that I am able to read and safely drive.  And I’m VERY happy to skip a month or two of eye injections.  Hopefully this indicates a new trend for me that will only get better in time.

Friday (6/1/2018):

I had my appointment with my surgeon in Indianapolis on Wednesday (5/30).  I thought it would be a "rubber stamp" kind of appointment and then I would head down to the Cincinnati area to have a new socket made.  I’ve been getting sores on the same spot for the last few months and it appeared to be a matter of my current socket not fitting well.  Instead, after x-rays, my surgeon said that I needed surgery to correct the problem I've been having.  That was a shock!  It took me the rest of the day to get my head wrapped around that major change in my plans.

I just got the surgery scheduled for July 6^th in Indianapolis at Eskenazi Hospital.  I was hoping for something sooner; but I guess it is what it is.  Ever notice that just because we want something to be different, it doesn’t change reality?

After surgery, I’ll go home to recover and then have to make a return trip from Eau Claire, WI to Indianapolis, IN for a two-week post-op follow-up appointment.

After surgery, I'll be wheelchair bound for 3-4 weeks or so, until I can heal enough to go down to get a new socket made (another two week trip to Cincinnati, OH area).

So it looks like I'll be limited mobility for the next couple of months or so at least, and racking up some miles on the truck as I go back and forth.

This all reminds me of the quote, "If you want to hear God laugh, tell Him your plans". I think He got a good belly laugh out of this one.

I am grateful that this problem was identified prior to wasting a lot of time and energy spent by my prosthetist trying to fix a problem that couldn't be corrected with just getting a new socket.  Having a definite problem and clear solution is so preferable to a nebulous uncertainty leading to a lot of failed attempts.  I hate wasting time! I want to get on with life!

I had my original amputation in 12/2013.  Then I had an Ertl revision done in 9/2016.  Now this reconstruction surgery is planned for 7/2018.  On the x-ray, you can see that my tibia (the bone on the left) protrudes below the bridge.  Where it protrudes is right in the area that I keep developing sores on the bottom of my limb.  So the idea of this surgery will be to shorten the tibia so that it is more in line with the bridge, reducing that as a pressure point.

I appreciate your prayers. I have to admit that I’m frustrated that my summer will be once again spent with limited mobility.  Last summer, I was limited due to a heart issue that took months and months to figure out.  I want to be much more active and to be able to do all the things that I enjoy.  Sigh!  I’ll just have to set my sights on the fall and be content with what I can do for the time being.

Here’s a reminder for each one of us:  You have no idea what another person is going through, what struggles they must overcome, or the frustrations that they face.  Unless you live with a person, you probably don’t have a good understanding of what they face each day.  Most of us show our best side to the world when we are out and about; so you may never know what that other person is coping with at home or for the rest of the day.  So seek to be kind, understanding, and pleasant to everyone you encounter today.

Monday (5/28/2018):

I’m heading out in the morning for Indianapolis.  I have an appointment on Wednesday with the surgeon who did my amputation revision surgery.  I believe that sores I keep getting recently are due to a poor fitting socket; but I’m having the surgeon take a look at me to insure that everything is structurally sound.  No use trying to build a better socket if there is something physically wrong with my leg.  So tomorrow I’ll be driving 500 miles so I’m ready for my appointment on Wednesday.

I’ll probably spend the weekend in St. Louis visiting my brother and his wife, before heading down to the Cincinnati area to have my socket built.  I’ll stay in Cincinnati until it’s finished and I can come home with a brand new leg.  Hopefully it will only take five days or so to get it made and dialed in so I can get back home.  I’ve found that after a week and half or so that I start getting homesick and a go stir crazy in the hotel.

Things were much easier when my surgeon and prosthetist were only 15 miles away.  But during the first year after amputation (2013) I developed extremely painful nerve issues that no one in the Mayo Health Care System could fix, so I had to travel to find someone who could.  I really didn’t want to spend the rest of my life in a wheelchair unless I was forced to do so.  I’m thankful that Rob Pinkston steered me to Dr. Janos Ertl.  Despite the time, energy, and expense to go see both of these men; it is well worth the price. 

So in the morning, I’ll be on the road again.  I’m hoping to come back home without limits and painful issues.  It’s that time of year when I want to be out there and active, so I need to get this leg repaired/replaced and get on with life once again.

Saturday (5/26/2018)

Update:

Yesterday slammed the end of my residual limb into the floor.  Oh my, did that hurt! I elevated and iced it for the rest of the day.  I’m thankful to report that I really don’t have any swelling, pain, or discoloration today!  Whew! I think I dodged a bullet on this one!

I was babysitting my two-year old granddaughter when she declared that she urgently had to go potty.  So we raced into the bathroom trying to avoid a mess.  I didn’t have my prosthesis on and was in my wheelchair.  Trying to get her pants down quickly, I leaned over too far while sitting on the edge of the wheelchair.  It flipped over and dumped me out right on the distal end of my amputated limb. 

Despite the pain, I got her pants down and my granddaughter successfully used the toilet. Yeah! Afterwards, I was still sitting on the floor trying to get control of my emotional response and accepting the pain.  The wheelchair was tipped over on me and also caught in the doorway.  It took a bit of effort to get untangled and get the chair back upright.  As I sat on the floor still trying to catch my breath, my granddaughter told me, “PawPaw, get up!”  I was blocking the door and obviously didn’t know what to do next—she was just helping me get out of the way so she could get out and go back to playing. Ha! Ha!

Banging the end of my leg like that gave me an instant headache and upset stomach (due to pain/ adrenaline release??).  I wasn’t able to be too attentive to my granddaughter after that so my daughter came and picked her up.  I spent the rest of the day in the recliner, icing the leg and keeping it elevated.

It is amazing to me how quickly things can go from being alright to suddenly being painful and stupid.  It just takes the smallest, momentary lapse in judgment for things to abruptly go wrong.  It is shocking how much of my confidence was destroy in that fleeting moment as well.  Usually I transfer to my wheelchair and back again without a conscience thought or concern.  After tipping over, I was paranoid and was overthinking every move I made for the rest of the day.

The other time that I took a serious fall was just a few weeks after my amputation, transferring from my recliner to the wheelchair. I forgot to check the brakes and only one was set.  As I tried to sit down, the chair rolled out from under me and I went down hard.

So I guess the lesson learned is to slow down and maintain situational awareness.  Rushing leads to pain.

I ride a motorcycle and they tell you that you have to accept a greater degree of risk riding a motorcycle than you do when driving a car.  Apparently the same is true about using a wheelchair in my case!

I’m scheduled to see my surgeon and begin the process of building a new socket next week.  My socket isn’t fitting well anymore and I’m having reoccurring sore spots develop, so it’s time for an evaluation and a rebuild.  After dumping myself out onto the floor, I was worried that swelling, bruising, or pain would delay that process for a week or maybe even a month or so.  A simple fall can be extremely damaging to an amputee. Waiting, delays, and rescheduling appointments can be so emotionally draining. Thankfully, it appears that I’m still good to go. YES!!! 

Wednesday (5/9/2018):

Thought for the Day:

I started playing Words With Friends (WWF) back in 2013.  I figured it would help keep my mind sharp and active, especially when my body wasn’t cooperating with me the way I wanted.  Late last year, I started playing with someone new.  We are fairly evenly matched and every game seems like an epic struggle from start to finish.  Even if I develop a comfortable lead, this woman finds a way to scramble back on top.  It’s never easy with her.  Every game is hard fought and every victory is hard won.  It seems to me that I barely outscore her when I win; but when she wins, it seems like it’s by a landslide.  I’d swear that she has won at least two-thirds of our games together.  But then I look at the Head to Head statistics and we have both won 18 games against each other.  Our longest winning streak against each other is each three games.  And our average scores aren’t all that far apart.  So although it doesn’t feel like it to me, I’m holding my own against her.  She’s good! And a playing with her is a great challenge.  I wonder if she feels the same way about me?

As an amputee, I’ve personally found that setbacks are part of my routine.  Right now, if I do more than 3,000 steps a day, I develop a bump on the end of my residual limb. In the past, that kind of bump turned into an open wound if I kept walking on it.  So as long as I limit myself and pay close attention to how the leg is feeling, I can keep moderately active.  As a result, I probably won’t wear my prosthesis today giving time for the bump to disappear.  I really need to have a good evaluation from my prosthetist and surgeon.  I think it’s time for a new socket or a major adjustment, something isn’t fitting correctly.  I’ve also noticed that I’m getting nerve pain again, especially on the distal end of my limb.  I’ve think that I’ve tried every combination of socks and made every adjustment possible for me to do—nothing works, so it’s time to seek professional help.

And it’s springtime!  And I want to be more active than I am!  I want to go for long walks, ride my bike, and spend the entire day on my leg, without concern.  But that just isn’t happening right now for me.  By monitoring and moderating my activity things are going okay.  But I long for more.  Having limits really messes with your brain.  Honestly, I’ve got it pretty good; but knowing what it could be, it doesn’t feel that way.

I keep on remembering what my first prosthetist told me.  “Don’t just look at the current setback.  Look at the big picture and see the forward progress that you’ve made.”  When you are in the middle of a setback, things look kind of bleak.  It’s easy to get discouraged and feel down.  Instead, look back and see how far you’ve come (despite other numerous setbacks).  That should encourage you to keep your chin up and keep moving forward as best you can.  Honestly, life isn’t as bad as it may feel at this moment.  Every day you are moving closer to your next break-through where things will look better.

It all depends upon what you are focusing upon—the setbacks and failures, or the progress and the victories.  A good outlook and attitude goes a long way towards being satisfied and feeling better about whatever you are currently going through.  And it helps you get through the current low spot that you might find yourself in.

I’ve found that in playing WWF that sometimes I may have a perfect opportunity to score big; but I just don’t have the right letter tiles to pull it off.  It feels disappointing knowing I’ve missed a golden opportunity.  Oh, well! It wasn’t meant to be.  I’ve also found that I can’t pay too much attention to the score.  If I get too far behind, I’ve discovered that I my tendency is to kind of give up and play the first word that I find, instead of struggling to find the highest scoring word that I could play.  I’m never going to win if I give up before it is game over.  And often enough I’ve played amazingly high scoring words late in the game to snatch victory out of the jaws of defeat; so I should know better than to give up. 

So keep fighting!  Keep applying yourself!  Victory may still be right around the corner if you keep moving forward.  

In WWF, I’ve found that you have to play the tiles you were dealt.  Sometimes when you have all vowels or all consonants, you can’t do much.  But if you keep playing whatever you can, eventually you get new tiles and new possibilities.  So even if the hand life has dealt you isn’t the best; play it the best you can.  If you resign the game and give up, it’s a certain loss.  Struggle through and you might still lose; but you may learn a new trick or two and that makes you a better player for the next game.

 I’ve found a lot of truth and comfort in this attitude quote from Charles Swindoll. I’ve read it hundreds of times and still find that I need to be reminded of what it says.  I don’t want life to wear me down.  I want to stand firm.  And no matter what life throws at me—I plan on staying positive and enjoying it as much as possible.