Wednesday (9/12/2018)

Wednesday (9/12/2018):

I traveled down to Newport, KY (Cincinnati metro area) on Labor Day (9/3) so I’d be ready to see my prosthetist bright and early on Tuesday morning (9/4).  Traffic was terrible and I was nearly in three accidents.  One I avoided by inches.  That was by the grace of God!  With the weather, road construction, traffic jams it turned into a 13-hour trip.  Whew!

On Tuesday, Rob made a static check socket and it felt great, then he put a foot on it so I could walk in it.  Once again I struggled with discomfort/pain on the radial edge of the limb.  He started trying all sorts of adjustments.  They seemed to help somewhat, but for every action, there is an equal and opposite reaction.  We struggled with doing too much and causing new problems, etc.  It was rather tedious work for both of us.  Imagine going to the eye doctor for a vision test, “Tell me which is better—1 or 2?”  He can flip the lens back and forth repeatedly and quickly.  Many of the changes we were trying would take several minutes to switch over.  Then I had to decide which was better based on a memory, sometimes up to 30 minutes.  I find that very difficult to do.  I was very frustrated by Thursday.  Things weren’t progressing well.  We weren’t finding answers and seemed like we were going in circles. 

Mentally I was discouraged.  Should I head back home once again and give it more time?  Why am I so difficult to fit?  Should I just accept that the best we can do is going to result in an uncomfortable leg?  That just seemed wrong!  It isn’t what I wanted; but what was I to do?  I spent Thursday afternoon and evening icing my leg and doing a whole lot of prayer and soul-searching.  That continued on into Friday morning when finally I felt the right thing to do was to finish the socket.  We had come to the conclusion that most of my pain was located where the doctor shaved the bone back.  That area was just taking longer to heal.  We did a few more adjustments and then Rob took my socket to go start building my new permanent (or definitive) prosthesis.  That meant I would be in my wheelchair all weekend and get my leg sometime on Monday.

I was surprised by a phone call on Saturday afternoon.  Rob had stayed late Friday night and worked all day Saturday (his day off) to finish my socket early.  I picked it up on Saturday at 4 p.m. to “test drive” it for the rest of the weekend.  That gave me time to wear it and walk in for a couple of days before going in on Monday morning.

Monday morning was spent doing a few extra checks, getting some training on replacing parts, and finishing up paperwork. 

This leg isn’t perfectly comfortable; but for now, it’s as good as we could get it.  Over time, I think it will get better.  One way to describe it is like breaking in a new pair of tight dress shoes—it hurts and pinches, but slowly they start to feel better.

Rob was even able to fabricate a water leg for pool therapy from old parts that I had at a very low out of pocket cost to me (my insurance only pays for one prosthesis).  The pool at my gym, my friend’s pools, and the ocean are all salt-water.  My normal leg is not rated for salt water (the vacuum pump).  Now when I go to LA to see the boys or FL to visit my brother, I can get into the ocean by walking into it!!!

I was back on the road north headed home by about 1 p.m. on Monday. With the late start, I broke the trip into two days.  I don’t do well driving at night on unfamiliar roads.  I made it to the western suburbs of Chicago and had an easy drive home on Tuesday.  The roads we much less congested and made it a more pleasant drive. 

After being home for only two hours, I was back babysitting my 9-week old twin grandsons and 2-year old granddaughter.   Then I was at the Fire Department for part of the evening afterward.  I slept well last night in my own bed.  So glad to be home!

Now I am slowing trying to work back into to life.  I’ve been walking about 2 miles a day on this new leg.  I’ll slowly increase my distance as my leg adjusts to wearing this new prosthesis.  Rob made some great improvements and we greatly improved the range of motion on my knee, so I can bend it to 90 degrees.  That makes getting in and out of vehicles much easier.  I should be able to ride my bicycle again. 

With this better fitting prosthesis, there is so much that I can do and so much that I want to do.  I just have to be wise not to overdo too soon.  Walks, riding the bike, pool therapy, swimming laps, lifting weights at gym, start back shooting archery, maybe get out deer hunting, yard work, ride my motorcycle, keep babysitting about 4 hour each day, continue volunteering as a chaplain for the police and fire departments (and resume a more active participation).

Live my life!  That’s all I hope to do.  

Friday (8/17/2018)

Friday (8/17/2018)

I just got home from my trip to the surgeon and prosthetist.  I didn’t come home with a finished product.  On Monday (8/13) my surgeon in Indianapolis gave me the okay to have the prosthesis built, so I headed to my prosthetist office in the metro area of Cincinnati.  Initially things went smoothly and we made great progress.  But my incision line was tender with any pressure and it was difficult to determine if the pain/discomfort I was feeling was from my leg being tender or from something needing to be corrected in the prosthesis. 

 Before and After Surgery Xrays (Before--top; After--bottom): Notice how long the tibia is on the first picture.  I was basically standing on that point.

So after going round and round, I finally decided to wear the temporary socket back home.  I’ll wear it and use it for the next couple of weeks, which should give me a clearer understanding of what needs to be done to improve the socket.  It will also give my leg time to mature a bit (push the fluids out and shrink some).  That means when we build the permanent socket it should las t longer because it will as tight as it can be.  My prosthetist is going for a “Zero Sock” fit.  No matter what, my leg will change over time and use, so I’ll need a new socket eventually anyway.  Every time I have another surgery, the “mature leg clock” starts over. 

Since this is a temporary socket, it’s not made as strong, so I can’t go pushing extremes with this one.  But for right now, I mainly need to walk, walk, walk, and walk some more.  Last night I walked for ¾ mile.  That’s the farthest I’ve walk in over a year!!!  Even with the discomfort/pain, while I was in Cincy, I was still walking over a total of 3 miles a day just taking it rather easy.  Again, that’s a vast improvement over what I was able to do.

My temporary socket:  I am able to reuse my pump and my foot.  The liners and sleeves (not shown) are a completely different style.  

Working with a prosthetist at a distance means that it’s a big trip and we try to shorten the process of fitting down to a week or two.  If I was doing this locally, it would happen with multiple visits over the course of a month or two.  This trip didn’t quite work as well as wanted; but I am walking better than I was already.  And we should be able to complete the process rather quickly when I go back down to Cincy in a couple of weeks.

It also looks like Rob will be able to fabricate a water leg for me fairly cheaply from all the spare parts that I now own.  My current leg can get wet; but only in fresh water.  All the pools that I frequent (and I have family at the Pacific and the Gulf coast) are salt water pools and my elevated vacuum pump can’t tolerate that.  So the water leg would be used for doing water therapy.  It is amazing how much resistance water adds to the easiest of movements.  My left leg is very atrophied and I need to swim, work out at the gym, do water therapy, and do a lot of walking to build it back up.  My left leg is so out of shape that I strained a muscle in it just walking up a small hill earlier this week! 

So things are going well.  Slower than I might wish for; but well none the less.  I don’t really look forward to driving back down to Cincy again in a couple of weeks.  With traffic and construction delays it took me eleven hours to get home.  That’s way too much time sitting in the truck.  But if I get out of the wheelchair and get to walk, well, that’s worth the drive for sure!

Tuesday (8/7/2018):

Update:

I have my six-week post-op appointment with my surgeon in Indianapolis on Monday morning (8/13).  I send him regular updates and photos of my limb so he knows how I’m doing.  He’s already told me that he plans to give me the okay to start working on having a new prosthesis made.   Awesome!!!

My Physical Medicine and Rehabilitation Doctor was tremendous squeezing me in to her jammed schedule on short notice so that she could be prepared to write the prescription for my new prosthetic leg.

I’ll travel to Indianapolis (500 miles) on Sunday (8/12), so I’m ready for my Monday morning appointment.

I’ve already set up an appointment with my prosthetist in Cincinnati metro area on Monday afternoon.  He makes the prosthesis in his own shop from start to finish.  With all steps, the adjusting, and getting it just right, it usually takes a week to ten days depending on how things go for me to walk out of there and head home.

The hotel where I stayed in the past has finally been completely remodeled.  In the past because I was there for medical reasons and stayed about ten days, they gave me a great rate of about $95 per day.  Now that they’ve remodeled, the rate went up to $175 a day.  I liked the spot I used to stay at; but not at that price! No, thank you!  I found a different place with more reasonable rates about a 25 minute drive away. 

The first few days in Cincinnati will mainly be spent sitting around while Rob builds my leg.  After that, most of my time is spent walking and wearing the leg to see how it fits and to make any adjustments needed.

Being that I live 750 miles away from my prosthetist means I have to invest the time and energy all in one blast to get there, and get it right before I come home.  Hopefully the process goes quickly.

I look forward to getting out of the wheelchair and back to walking again.  It will be great to be upright and active again!  One of my goals is to get my bow out and start shooting archery again.  I’d like to get out in woods to deer hunt this fall.  We’ll just have to wait to see how it all goes.  

Saturday (7/14/2018)

Update:

I had my surgery done in Indianapolis last Friday (7/6).  I was told that it went well.  I was discharged on Sunday.  My wife had flown in on Saturday to drive me home.  500 miles is a long drive when just sitting upright in a chair for an hour wears you out.   I laid down in the backseat of the truck for half way home.  

I've stayed at home resting for the week.  On Friday (7/13), I went over to my daughter's and got to play with my granddaughter and hold my grandsons.  That was pleasant!

I was having trouble with my limb all week.  The bleeding at the incision hadn't stopped, which is unusually long.  Also I was showing possible signs of infection, so I called the doctor.

It's a little more complicated when the hospital you had the surgery at is 500 miles away, the surgeon had a family emergency right after my surgery, and you are trying to find someone who knows you to talk with them.  Thankfully both hospitals use EPIC for record keeping, so the records and things transferred back and forth.  Anyway, my Indy team sent me to the ER to have someone look at me and run some blood work.  

My white cell count was somewhat elevated but I had a number of symptoms that I seemed to indicate an infection starting.  So I was put on two antibiotics and sent home.

I'm so very grateful that now just 12 hours after starting the antibiotics that my leg already looks so much better!!!  I think we nipped it in the bud before an infection really took hold.  Whew!  Fears alleviated!

I've got a two-week post-op follow-up scheduled in Indy this coming Friday (7/20).  I'll drive down on Thursday and then drive back home on Friday after my appointment.  Not looking forward to 1,000 miles in two days, but that is just the way it is.  I'll have lots of time to listen to my favorite music!                              

I got to tell you this.  It makes me laugh.  I called the hotel that I stayed at prior to my surgery.  I asked to reserve "a wheelchair accessible" room.  The lady told me, "We don't have any of those here.  We only have handicap accessible rooms."  I answered back, "Well, I stayed at your hotel last week, so whatever you got will be fine."  LOL.  The room I stayed in there was one of best layouts for a wheelchair that I ever had.  So yeah, I should be fine.

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.