Monday (12/11/2017)

My bother made the comment last time I talked with him on the phone, "How can you shovel snow one-handed?" so I made a video today. 

  

I had surgery on my right wrist and elbow for carpal tunnel two weeks ago.  Being limited to one-hand is frustrating; but as much as possible I cannot let it stop me completely.  I've got to do what I can do.

It is very tiring to shovel one-handed and much slower than using two-hands.  Glad it's been small, light and fluffy snows so far.  Thankfully my old work coat barely slides over the cast.  It's the only coat that currently works.  I usually just have a sweat jacket draped over the right shoulder.  A glove won't fit over the cast on my hand, so that's a sock to keep my hand warm.  I get my soft cast off my arm on Wednesday.  I'll still have weight and activity restrictions for the next 4-6 weeks, so I suppose I'll be doing more one-handed shoveling ahead.

I still have the sore on my leg.  I'm not wearing my prosthesis except for an hour or two a day at the most.  Some days I don't wear it at all trying to let it heal.  Cannot happen soon enough!

Combined together not being able to use one leg and one arm is frustrating.  I've been much more house bound than I'm used to being.  There are so many things that I just cannot do.  Working hard to keep a good attitude and being creative to get whatever I can done.

Monday (12/4/2017):

Update 

I had surgery on my wrist and elbow last week. I still have swelling in my fingers, so the nurse told me to ice my armpit and elevate my arm up to head level.

I told my wife, daughter, Ruth, and son, Joshua, this while we at lunch at my wife's office.

This was Ruth's solution for me.

It actually worked pretty well!

​

I'm still having trouble with my prosthesis.  Only wearing it an hour or two a day.  And it is a tremendous effort to put it on one-handed.

Wednesday (11/29/2017)

Update:

Surgery on my right wrist and elbow went well yesterday. the cast stays on for two weeks. I'm right handed so I'm learning how poorly I do with my left hand and with only one hand. Some things are beyond me. Cudos to all my upper extremity amp friends--you are amazing!!

I am also still waiting for the sore on my residual limb to heal so I can wear my prosthesis.

At least I haven't lost my mind...wait a minute!!!! Now where did I put that???

Monday (11/27/2017)

Update:

I’ve got a busy medical week going.   

It started with an appointment at Wound Care this morning.  I developed a sore on the end of my residual limb about ten days ago.  I’ve using my wheelchair and minimizing the use of my prosthesis while it heals.  Thankfully it is healing and is not infected.  I met a new doctor today and visited a department that I’ve never been to before!!!  YESSSSS!!!  Hey you got to find joy any way you can!!! 

If I was playing “Hospital Bingo” I think I would have about covered my entire card and won the grand prize…but I don’t know how I’m ever going to get an Ob/Gyn appointment to win!??!!  Sometimes “Winning really ISN’T everything…”  Living and surviving is really enough!  Sorry, Vince!

I had an appointment with my Retinal specialist this afternoon and got an eye injection.  My eyes are resistant to treatment, so while my eye sight has been fairly stable, it means I usually get an injection in each eye once every month to keep it that way.  Now there is a way to have a good time! 

Tomorrow (Tuesday) I show up to the hospital at 6 a.m. for surgery for carpal tunnel and cubital release on my right wrist and elbow.  I was in a lot of pain this morning just getting a clove of garlic out of the refrigerator—I think it’s clearly time to “get ‘er done.”  Early next year, I’ll need to get the same thing done to my left arm as well.

Later this week, I have an appointment with my local prosthetist.  I finally get my new pair of shoes and orthotic inserts for my right foot.  That’s like Christmas come early!  I also need to set up an appointment with her to get my prosthetic leg adjusted so I don’t develop any more sores.  Hopefully it is an easy fix (but with my track record, I’m not holding my breath).

I’ve been waiting for the carpal tunnel surgery since this springtime.  Since I won’t be able to use my right arm for a while, I was thankful to squeeze in the surgery before Christmas, before we started getting lots of snow (that I couldn’t shovel), scheduled while there was time to recover before filming my scene for my wife’s movie, and while I was walking well so I wasn’t stuck in a wheelchair without an arm to propel myself.  Oh well, best three out of four, I guess.  I won’t be able to do much traveling in my wheelchair after the surgery (arm use limits and weight restrictions), so I’ll be more housebound since I’m supposed to minimize use of my prosthesis.

Oh, well!  Have you ever noticed that life rarely works out like you planned?  As my middle son reminded me the other day, “Dad, you tend to be a control freak.”  My life has certainly been out of my control on most days over the last four years.  Overall, I think I’ve handled it well with only a few momentary lapses here and there.  I’m not perfect; but I keep trying to turn it over to the Lord God.  His will.  His way.  His timing.  Only by His grace and mercy. Surrounded by His peace.

Thursday (11/23/2017)

Update:  

Thanksgiving Day is the fourth anniversary of my hospitalization that led to my amputation.  By the time my wife figured out it wasn’t the flu and rushed me to the hospital, it was almost too late.  The infection had gotten into my blood stream and the doctors weren’t certain that I would live.  AND YET FOUR YEARS LATER, HERE I AM!!!  Thanks you, Jesus!

I’ve certainly had my ups and downs over the years.  I’ve struggled with diabetes, kidneys issues, liver shock, vision problems, and debilitating nerve pain.  I’ve spent about a year and a half using a wheelchair because I couldn’t use a prosthetic limb.  Starting this summer (just when I thought everything was going well) I’ve dealt with daily constant headaches, heart pain, and with carpal tunnel and cubital tunnel.  And now I have a sore on my residual limb that we are watching to see if it will heal or become infected.  SIGH!!!  I’ve had to significantly cut back on the number of hours I wear my prosthesis and on some of my activities while this sore heals.

Since Thanksgiving Day 2013, I’ve had 360 medical appointments or treatments/labs and spent 23 days in the hospital.  WHEW!!!!  That sounds like a lot, but I know amputees which have had far more difficult struggles than I have had; and I also know amputees who seem to just breeze on through life without much difficulty at all.  Everybody is different.  Each one of us has our own path to walk. 

I can certainly attest that my life is much more complicated than it used to be!!!  The smallest issues can quickly escalate into a serious problem.  And nothing ever gets resolved quickly if you are dealing with the medical field!  Being spontaneous takes much more planning than it used to require (Ha! Ha!).   I have to constantly work on adjusting my attitude so that I accept my current situation and limitations which are ever changing. 

AND in spite of (as well as because of) all that I have gone through (and continue to go through) I AM BLESSED.  I have so much to be thankful for this Thanksgiving.  One of my prayers when I was initially hospitalized was that I might live to see my children continue to grow.  Each day that I get is a blessing!  One of my greatest joys is getting to spend so much time with my granddaughter.  I spend several hours with her each week—it doesn’t get much better than that.  I don’t get to do everything that I would want; but I still get to do plenty.  Every step I take is a blessing.  Most of the time, I am independent and can drive myself to errands, medical appointments; and I’m even able to do some volunteer work.

All that I have gone through has given me a keener sense of gratefulness.  I am filled with joy being able to some of the smallest, “normal” things that I used to overlook and take for granted.   My perspective has changed—and for the better!  Perspective, outlook, or attitude—whatever you call it—is a choice.  Each one of us gets to decide if we are going to focus upon the negative or the positive things in our lives.  We can choose to see the “silver lining in every cloud” or the “cloud in every silver lining.”   I am not saying that my life has gone exactly the way I wanted it; far from it!!!  But I can choose to wallow in self-inflicted misery or embrace the joy found in a positive, upbeat outlook.  I’ve found that there is ALWAYS something to be thankful for.

My life has changed and I am nearly constantly challenged by some new adventure; but I am enjoying the journey much more than when I was abled-bodied and so caught up in life.  I don’t know how many more hours (days, weeks, years, or decades) that God will grant me life; but I look forward to enjoying each and every one—not matter what they bring! 

I am Thankful!!! 

I hope you take a few moments today to express your gratitude as well.

Monday (10/23/2017)

Yesterday (Sunday) I was able to attend church for the first time in over four months!!!!   I had to wear earplugs to block out some of the volume; but I did it.  Yeah!  It wasn't comfortable; but it wasn't as painful and  overwhelming as it had been.  My therapist hopes that over time my sensitivity to sound will decrease and it will get easier.  With the earplugs in I found that I couldn't sing along--that added too much sound in my head, so I just listened.  Kind of frustrating not to sing along; but I'm taking baby steps forward!!!!

It's not just church that has been too much for me to handle.  Many stores and restaurants are too loud and painful for me as well.  I'm not back to listening to music for pleasure yet.  That's still beyond me.  But hopefully one day I'll be able to tolerate it and then get to the point that I enjoy it again.

Weird; but true!!!

Saturday (9/23/2017)

One year ago today had a life-changing surgery done.  I had a revision done to my below the knee amputation by Dr. Janos Ertl.  Before the surgery I was basically wheelchair bound because of intense nerve pain in my residual limb.  My constant nerve pain went from the bottom of my stump all the way up to my lower back.  I couldn’t sit in a chair or ride in a car for more than an hour without terrible pain.  I was using opioids to help make the pain bearable.  With a lot of work, my prosthetist fashioned a leg that I could wear for up to an hour a day, but then the pain was too great to stand any longer.  I was sent by my local doctors to the Mayo Clinic in Rochester, MN; but even there the doctors had no answers and said there was nothing they could do for me.

                                                                                        

Fortunately a FaceBook friend had been politely pestering me to see Dr. Janos Ertl in Indianapolis; and I had nothing to lose so I went to see him.  I am so glad that I did.  I will admit that I was a bit skeptical when he quickly told me he could help me.  I had the surgery done and he delivered more than he promised me.  All I really expected was for a reduction in my leg pain so I could walk again.  Not only did the ERTL revision take away all my leg pain, all the pain in my lower back disappeared as well!!!!  Dr. Ertl gave me my life back!  I’m so grateful to Rob Pinkston for encouraging me to seek Dr. Ertl out.  And I’m so very thankful that Dr. Ertl for doing something completely different than the standard style amputation. 

Here are a couple of articles to read for more information about the ERTL procedure: 

https://opedge.com/Articles/ViewArticle/2010-10_02

http://www.ertlreconstruction.com/2015/07/osteomyoplastic-amputation-reconstruction/

I’ve had a number of other issues in the past year that haven’t allowed me to get back to doing everything that I have wanted to do; but the constant, excruciating nerve pain in the residual limb and lower back is not one of them.  I’m walking today because Dr. Ertl is willing to go well beyond the limits of a standard amputation. 

My original amputation was done on December 3, 2013.  

Sunday (8/20/2017)

Update:

On Monday (8/14) I went to the ER with chest pains.  They did a lot of tests and concluded that I did not have a heart attack.  So I was sent home and scheduled for a follow-up with my primary physician.  I was told to get a cardiac stress test as soon as possible.

On Thursday (8/17) I went back to the ER with chest pains again.  Once again they said I had not had a heart attack.  This time they admitted me to the hospital for observation and further testing.  Lots and Lots and Lots of testing.  

On Friday (8/18) I took the stress test and they found that I had one small area in the lower left chamber that wasn't working correctly (ischemia).

 On Saturday (8/19) I had a heart catherization.  They did not find anything that could be stented, fixed or repaired.  My arteries are all clear.  They are attributing my chest pain to Small Vessel Disease, a common issue with those who have had diabetes.  So they prescribe medicines and discharged me on Saturday night.

Whew!  What a life-changing week!!!  

I am extremely grateful for the care I received.  My Hospitalist and nursing staff were outstanding!!!!  Thank you Sarah, Kendall, Emily, and most especially, Dawn.   I had a three hour episode of chest pain on Saturday and Dawn was with me for almost every second, getting me the care I needed and helping me through it all.

This week ahead, I have two medical appointments to go to and otherwise I am staying home and doing absolutely nothing!!!

I'm scheduled to fly to St. Louis next Monday (8/28).  My brother is getting married Labor Day weekend and I am performing the ceremony.  So I plan on being "good boy" and not take any risks this week so that it actually happens.

I'd appreciate your prayers for the medication to work well with minimal side effects, and that I do not have any repeat episodes of chest pain.  Hopefully, we'll get the med levels balanced and I will be able to resume more of my "normal" lifestyle soon.

Sunday (8/13/2017)

Update:

I've made good progress in reducing the amount and the intensity of headaches, dizziness, and foggy thinking that I've been experiencing; however I still am facing problems and limitations with it.  One of my disappointments is still not being able to attend church.  Puts me in sensory overload.  :-(

Physical Therapy focused upon pinched nerves (especially in my neck) seems to have reduced my symptoms.  I'm able to get out and do more things; but I still have moments and days where I'm in pain. 

Friday (7/28/2017)

Update:

Since the beginning of May, I’ve had constant headaches, mental fogginess, dizziness, stiff and painful neck, buzzing tightness around the head, etc. which has severely limited my activity and ability to function.  I’ve undergone numerous doctor evaluations and tests (around twenty appointments so far in the last 2 ½ months) trying to determine a cause and a cure.  I’m pleased to say that in the last week, we may have stumbled onto something.  It may not solve all my problems, but it has helped some already.  I’ve even had two days where I was able to get out and do more activity than I’ve been able to tolerate at any time in the past three months.  I have a long way to go to get back to normal; but this is encouraging and gives me some hope.

What seems to have helped me is a combination of some exercises for vertigo, a steroid nasal decongestant, and most importantly, physical therapy on my neck.  Apparently I have some impinged nerves causing a lot of the problem.  I’m hoping with continued treatment that all of the symptoms will eventually fade away and I can get back to my normal life (household chores, exercise, volunteer work, driving distances, etc.).  It’s been tough not feeling well enough to do anything but sit around doing nothing.  Hopefully all that changes beginning from right now.

Monday (6/19/2017)

Update:

I got the results of my brain MRI back...and the doctor said they didn't find anything!

Well what he actually said was that there was "no evidence of stroke, tumor, or other structural cause" for my symptoms.

So, I guess they did find a brain.

So that is good news since the only thing they could have found is life-threatening serious stuff. Although it doesn't put me any closer to knowing what the cause is, it does relieve some anxiety.

Like a game of Clue, I don't know who done it yet, but I have been able to cross a few suspects off the list.

My symptoms continue and I would like to find a treatable answer and resume my "normal" lifestyle.

Wednesday (6/14/2017)

Update: 

Since the beginning of May I haven’t been feeling well.  At first I thought it was just because I was out of shape and had been aggressively working at getting back into shape since the beginning of April.  While I enjoyed working out six days a week, I was extremely tired and worn out all the time.  I figured that I’m just older and I haven’t been able to be too active over the last four years, so it was natural that it would take a lot out of me to get back into shape. 

I would feel so worn out after exercising that I had to sit in the truck for up to an hour to feel good enough to drive home from the gym.  But then I started getting dizzy and almost passing out and I knew that something was going on and I needed to be checked out medically.

So far I’ve worn a heart monitor, had an EKG, and had a ton of blood work done.  And so far everything has come back normal; but that’s not the way I feel.  I have a constant headache.  If I do the slightest activity I become a bit dizzy or become mentally foggy (thinking slows down, etc.).  I feel a constant pressure on my head like I’m wearing a tight stocking cap that’s too tight.  Pain meds don’t help.  Sitting still in my recliner reduces my symptoms somewhat, but the moment I get up they come right back.  I usually can do one or two short things a day and then I’m done.  I haven’t even been to church for the last month because I wasn’t feeling up to it.  I actually made it to the worship service one week; but had to leave immediately because the music was so overpowering loud to me (my wife told me it was no louder than usual).  I’ve stopped going to the gym and curtailed most other activities, some of which I dearly miss. 

 I was just seen by a neurologist and I’m having a MRI of my brain done in the morning (6/15).  After his exam, he told me that he thinks “the MRI will show that I have a ‘normal’ brain.”  Ha! Ha!  He’s in for a surprise—I’m definitely not “normal”.  He obviously hasn’t heard any of my jokes or seen any of my memes on FB!!!

Right now, tentatively, my symptoms line up with something called “New Daily Persistent Headaches”.    The good news is that for some people the symptoms go away after a few months to a couple of years.  Of course, for some people the symptoms continue for years or decades.   Most of the time medication has little to no effect.  The doctor told me the best thing to do is to minimize the things that trigger the symptoms and take it easy.

Who knows?  Tomorrow’s MRI might show some other cause for what’s going on.  Or if nothing shows up on the MRI, another test that my primary doctor lines up might pinpoint a diagnosis. 

At first, I really figured it was something wrong with my heart.  Then I figured my arteries must be blocked.  Those don’t seem to be the problem, so now we are checking out the head (tumors, cancer, stroke, etc.).  The neurologist doesn’t think we’ll find any of those things wrong with me either.

I really don’t know where this is headed.  I don’t have any answers right now.  I’m just trying to make it through each day as we search for a diagnosis and hopefully a solution. 

The past month and a half have been hard on me emotionally.  My doctor has been taking good care of me but the medical system seems designed to test your patience.  Like most of us, I want answers right away and I want my problem solved quickly.  I also know that after I get this resolved that I am headed to surgery for my carpal tunnel and cubital tunnel (in both arms eventually).  So I feel like my summer is already gone.  This certainly isn’t the summer that I had planned.  And yet I can still say that life is good!

 I appreciate your thoughts and prayers.

Saturday (5/27/2917)

Update: 

I got my results back from my heart monitor.  My heart is fine and looks normal.  Yeah!  Thank you, God!

I am still having episodes of dizziness and mental fogginess, so next Wednesday I’m having an ultrasound done of my carotid arteries to check for blockage there.

I am tired of having to wait a week or two after one test is done before the next one; but as a friend reminded me, that is a good thing.  It means that the doctors aren’t worried about a serious condition that requires immediate emergency treatment. That is so true!

I am looking forward to feeling 100% again and being able to fully resume my activities without concern.

Unique Encounter:

I went to Walgreen’s today and as I got back to the Pharmacy, another customer got very excited and starting talking to me.  The lady was very personable and pleasant.  Everything she said should be in ALL CAPS and Italics because that is the way she talked.  “Oh my!  I love your prosthesis!  I’ve never seen one like it before!  Why does it look like that?”  (I was wearing shorts). I patiently explained how flexible the foot was and how well it worked on uneven ground, etc., etc. etc. 

It was all a bit strange.  I’ve never had an encounter quite like that before.  She seemed genuinely happy and pleased for me.  My wife asked me later if it made feel uncomfortable.  I told her that surprisingly it did not.  Some people would have freaked me out coming on so strong; although she was a stranger, she made me feel very comfortable to talk with her.  The Pharmacist witnessed it all and she gave me a big smile afterwards as if to say, “You handled that very well”. 

Sunday (5/21/2017)

Update:

For the last couple of weeks, I've been getting dizzy, light headed, tired, and nearly feinted a couple of times. I just finished wearing a Holter monitor for 48 hours. I turn it in on Monday and have a follow-up appointment with my doctor on Friday. It's probably going to take some time, having more tests, and being referred to a specialist or two, to get this figured out.

It seems like every time I start making some improvement in one area, something else goes haywire. Sort of like doing repair work on an older car. You fix one thing and you uncover something else that needs to be repaired.

I like to think of myself as a '57 Chevy. Well worth the time and energy to repair and restore it!!! I'm a classic!!! Not ready to be towed to the junk yard yet!

Thursday (5/4/2017)

Update:

A month ago I had an MRI done on my left knee trying to determine why I had developed severe knee pain while I was wearing my prosthesis.  The MRI showed that I had several small issues but nothing that the doctors felt could produce the level of pain I was having.  They feel that my left leg isn’t strong enough, thus allowing the patella to move around too much and causing the pain (that’s my understanding of what they said).   It’s rather obvious that my left leg has atrophied over the last 3 ½ years, especially since I spent 1 ½ years in a wheelchair full-time and was very limited in my walking for most of the time that I did have a prosthesis.  So the plan is for me to regain some of the muscle and strength that I’ve lost and see if that helps.`

For the last month I’ve been going to the gym six days a week.  On three days I swim laps for 45 minutes.  On the other three days, I work out with weights and use some of the cardio machines.  In the last month I’ve worked up to 225 steps on a stair stepper, 8 minutes on an elliptical, and another 10 minutes on a “pedal car” style bike (I don’t have the range of motion with the prosthesis to do a regular bicycle). 

I also work daily on standing on one leg (both right and left) as well as several other exercises using bands given to me by my physical therapist.  Standing on one leg on my left side (on the prosthesis) is very difficult; but I’m making slow progress.  So much of the ability to stand on one leg is done with the lower leg and ankle (as well as getting sensory feedback) that an amputee is missing.  Other muscles have to be strengthened and some retraining has to take place to make it work after an amputation.  I’d also like to say that my prosthesis has a very flexible foot (ankle) which makes it more challenging.  Not to mention my weak muscles and overall lack of balance and grace even before I became an amputee.  Ha! Ha! 

The picture is how my leg looks after one month’s labor and there is already a noticeable increase in my muscle mass and leg strength (I never thought of taking a picture before I started this a month ago).  Let me say that the cardio and swimming is very tiring work; but I am stronger than I was a month ago.  I’m still wiped out each day afterwards; however, I am not taking as long to recover as I did at the beginning.

As far as whether all of this is making a difference with the knee pain, I don’t know yet.  I’ve purposefully not pushed myself in ways that caused the pain in the past.  I want to give my leg and knee time to strengthen before putting it to the test.   And I know that I’m better off if I’m stronger and in better shape.  I’ve got a L-O-N-G way to go; but I’m working at it, one step at a time.

Monday (5/1/2017):

Update: 

For the last couple of months, I’ve had a lot pain in my wrists, numbness in my hands, and a loss of strength in the hands.  I had an EMG done last month that indicated that I have carpal tunnel syndrome in both wrists.  My right side is much worse and more painful.

I had my appointment with the orthopedic surgeon today.  After examination (with a number of interesting test gadgets I’ve never seen before), he confirmed that I have carpal tunnel syndrome.  He also said I have cubital tunnel syndrome (ulnar nerve running through the elbow) and a bit of diabetic neuropathy in the hands as well.  As is my habit medically, I just don't do anything simply.  Ha! Ha!

Today he injected lidocaine and steroids into my carpal tunnel of my right hand.  That should give us an idea of how much relief I will gain from surgery.  Steroids take 3-4 days to kick in.  Right now the lidocaine is making everything feel better.  Tomorrow, the doctor said my wrist would probably hurt after the lidocaine wears off and before the steroid kicks in.

He did say that from my exam he fully expects that I will end up having surgery, but sometimes the steroid injections relieve the symptoms, so it is worth a try.  

I have a follow-up appointment with him on June 1st.

So besides wearing the wrist splints to bed every night, I now also have to wear elbow pads that don't allow me to fully bend my arms while I sleep.  That should help relieve some of the pressure on the ulnar nerve in the elbow.  I've gotten used to sleeping with the wrist braces; but now I'm adding the elbow pads.  I don't know how that will go.  I ALWAYS sleep with my arms sort of bent and tucked up near my head.  That's not happening tonight with the elbow pads...I suppose if I get tired enough I will sleep even if it isn't in my normal "nighty night" position.  Sigh!  At least I don’t have to wear all that during the daytime.

Photo: Both arms are like that. What a hoot! I don’t know if I’ll be able to even get a drink in the middle of the night without stripping everything off of one arm.

My doctor said that when we do the surgery, he'll do both the wrist and the elbow at the same time.  Sounds like a two-for-one deal!  But I suppose that they'll still charge full price for both and I won't get a BOGO deal from billing.

On the positive note, the doctor wants me to continue doing any activity I feel comfortable doing during the day time, so I don’t have to give anything up right now.

I do know that I would like the pain and numbness to go away. There are a number of things that I cannot do right now that I’d really like to do.  I guess that is just a part of life isn’t it?  You cannot always do everything that you would like.  Whether it is time, money, health, work, family obligations, etc. sometimes we are just limited.  That’s probably not a bad thing and it’s something each of us must learn to deal with.

Wednesday (3/29/2017)

Just got off the phone scheduling an MRI for my knee on my residual limb (LBKA 12/2013). Apparently my knee cap does not track correctly giving me pain, so the MRI is to find out why.

Before they will schedule an MRI they ask a ton of questions, such as, "Do you have a pacemaker? Do you have any stints? Do you have metal clips in your head from a previous surgery? Have you ever been shot?" As they asked question after question that I answered "No" to, I just had to smile.

Although I have some problems...there is a WHOLE BOATLOAD of medical problems that I DON'T have!!! Made me feel pretty well off all things considered. 

It is so easy to focus in on one or two things and miss seeing the bigger picture.

I'm not walking much right now; but I've got a medical team exploring why I'm having pain. I don't know what the outcome will be or where all of this will lead. On one hand I'm fairly tired of the constant up and down of my life. On the other hand I am content and satisfied knowing that things could be much much worse. I don't have it too bad!

Monday (3/27/2017)

This morning I had my appointment with my Physical Medicine and Rehab doctor (PMR), Dr. Schmidt.  After examining me, she said she believes something is definitely going on with the knee (she doesn’t believe it’s a back or hip issue).  She wants an MRI done… 

“And Now We Dance”…  Dr. Schmidt said since it was a specialized revision surgery done to my limb, she wants Dr. Ertl’s input and approval for any further action taken.  We’re trying to talk to Dr. Ertl in Indianapolis to see 1) Does he do knee surgery if there is something there? 2) Does he want the MRI done here in Eau Claire or should it be done in Indianapolis? and 3) Any special requirements for the MRI if done here?  Getting two doctors separated by 500 miles to communicate can be a bit of a challenge.  He may say that any knee surgery can be done here, which would make it much easier; or he may want it done in Indianapolis.  I have no idea.

She is also sending me to PT to learn some specific exercises in case the issue turns out to be more muscle/tendon needing to be strengthened rather than a structural issue that needs surgery.  The muscles in left leg are obviously smaller than in my right leg.  She’s concerned that this imbalance may be causing me to compensate in some fashion, which in turn may be causing the pain.

I am supposed to start walking in small amounts again.  The goal is to keep it under the pain threshold.  Since I am not certain where that “magical line” exactly is (it has varied greatly in the past), it’s bit of a soft target for me.  How much is too much?  I guess I’ll know when I cross the line. L But in the past that didn’t mean that the next time it would take the same amount of walking.  I really don’t like grey, fuzzy limits!!!  As my wife will attest, I like to push the limits when it comes to walking!

So continue to pray for wisdom as we continue down this path to see where it leads.  I am thankful that we are doing the MRI and exploring the cause rather than just ignoring it and hoping it doesn’t happen again.  I’m very grateful for all the time that Dr. Schmidt spent with me this morning (almost an hour).  She is trying so hard to find answers.  As Dr. Schmidt was completing her paperwork for insurance billing, she reminded me that I am a unique challenge, as she smiled and said, “There are just no codes for you!”

Saturday (3/18/2017)

My recent trip to see my prosthetist, Rob (the guy who builds and adjusts my prosthetic leg), didn’t end as I had hoped. He tried his best but my body had different plans!  The end result is that my knee is messed up and needs time to rest and recover, so I’m riding the wheelchair 24/7 for a while.  I’m in the process of getting an appointment with my Physical Medicine and Rehab doctor for evaluation and further recommendations. 

Last month I started having pain below the knee after walking a bit.  I’m 600 miles away from my prosthetist, so we do a lot over the phone.  Nothing I tried worked so I made the trip down to Newport, KY (Cincinnati metro area) to see him in person (left home on Sunday 3/12).  My assumption was that he would get everything corrected and I would be happily walking without pain once again.

Normally when you have a painful area on your limb it will show up on your skin; usually as an angry red area.  My skin wasn’t doing that so it made pinpointing the problem all that much more difficult.  Rob would make an adjustment based upon what I was describing and then I would walk to see if it would hurt again.  We did that over and over and weren’t making much progress (Rob would make an adjustment.  I would walk anywhere from ¼ mile to 1 mile and the intense pain would hit again.  We repeated this cycle over and over).  Eventually we came to realize that the problem area was just below the patella instead of the 2-3 inches lower where I thought I was having the pain.  By that time, my knee was pretty beat up.  We couldn’t continue making any adjustments with my knee so sensitized to pain.

And I remembered about two and a half years ago with one of my first prosthetic limbs that I could not tolerate the Patellar Tendon Bearing style socket and had an MRI of my knee done.  One of the things they found was that I had a mild patella dysplasia (I think that means that my knee cap does not work right and causes pain).  Rob made some adjustments that should help that issue but my knee hurt too much to give it a fair evaluation.  My knee needed some recovery time out of the socket, so I headed for home and arrive back in Fall Creek on Friday afternoon (3/17).

It was a very trying time because there weren’t any easy answers, and the location where I felt the pain originally was not the same area where the trauma was apparently occurring.  Finding the MRI results helped steer us in the right direction, but it was a very long, painful process for me.  It’s difficult when you are filled with hope (“This time it is going to work”) and instead are greeted with intense pain again time after time.  With my past history (being stuck in a wheel chair full-time for almost a year and a half) it became a bit of a mental battle as well (“Oh no, here we go again”). 

All I want to do is walk, do some of my favorite activities, and regain some normalcy in my life.  I hope it happens; but I honestly don’t know if it ever will.  Deep Sigh!  I went back to my hotel on Wednesday evening somewhat defeated.  Things weren’t going well.  We didn’t really have any plan or new ideas to try.  I had asked my family to pray for wisdom for Rob and we made a little forward progress, I believe.  At this point I hadn’t remembered having the MRI done, so we were still shooting in the dark. 

One of the best things that I did is grab my phone and went to my bible app.  I was going to read scripture and pray awhile.  The app I use always opens with a verse of the day.  Here is what it was for Wednesday.  Psalm 73:26  “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” (ESV).  Wow!!!  I needed to hear that.  My body may (and may continue) to fall apart; but God is my source of strength and will provide exactly what I need every day for the rest of my life.  It’s a reminder to me that my joy and happiness is not centered solely in my physical and/or adaptive abilities.  If I have God, then that is enough.  That doesn’t mean that I don’t desire them; it just means that I can live without them if I have to.  The turmoil in my heart quickly settled into a peaceful acceptance.  After that I had a restful evening.  I found the MRI results and sent those to Rob.  The next morning I easily decided that I would head home and let the knee recover for a while. 

I’ve got to say that after enjoying walking for several months, the last thing that I want to do is sit back down and ride the wheelchair again.  But I’ve come to realize that so much of the Amp life for me is about accepting certain limitations after giving it my best shot.  I’m hoping that my knee recovers quickly and I can resume walking again soon.  But I’m in it for the long haul and just have to wait and see how long this current chapter of my life lasts.

Wednesday (3/1/2017)

Update:

Up until a couple of weeks ago everything seemed to be going well.  I had cut back on my walking somewhat because my knee was popping.  I figured that I needed to give it some time to strengthen and get used to carrying the load again after not walking very much for so long. The knee responded well but then I developed a pain along my tibia a couple of inches below the knee.  For those of you into anatomy, it’s in the region of the tibial tubercle.  One thing cool about all my medical issues—I get to learn something new about the body all the time!

So communicating with my prosthetist (Rob, the guy who builds and adjusts my prosthesis), I’ve tried all sorts of things on my own.  At first I thought it had to do with the alignment of my prosthesis due to using different shoes; but after getting those adjusted the pain has continued.  If you have ever walked around the back end of a truck and hit your shin (that’s the tibia) on hitch, you have a great understanding of the pain I’m having.  Every step I take feels like I’m running into the hitch again.  Some days as I take it easy, I can get through most of the day without pain.  Most days, I get a couple hours of limited use before it starts.  On a few days, the pain begins as soon as I put my leg on.  At times I’ve been using crutches along with my prosthesis.  Usually taking some of the weight off the leg reduces the pain significantly—usually but not always.  This pain is something brand new and is not associated with the revision surgery I had done last September, that’s all good.

So I’m scheduled on March 12^th to head back to Indianapolis/Cincinnati for evaluation and have work done on my prosthesis.  Hopefully Rob can work his magic on my prosthesis and make all the pain go away!  I’m hoping that there isn’t anything that will require that I not wear the prosthesis for a period of time or requires surgery to repair.  We’ll see.  I know I’m in good hands and I trust Rob and my surgeon to find the best solution for me.

Recently I decided that driving towards the mountains is a good metaphor for my journey as an amputee.  As you drive towards the mountains, you think, “I just have to get over that one mountain.”  But then you reach the top and realize that there is a valley to go through and then another mountain top to reach.  When you get to the top of that one, you find that there is yet another valley and another peak ahead.  What appeared to be fairly simple and straight forward at first has become more of a journey of epic proportions. 

So I’ve crested yet another mountain peak and am now in another valley…  I don’t know how long my journey will last, nor do I know how many more peaks and valleys I’ll have to traverse.  All I can do is keep putting one foot forward and taking the next step…

Tuesday (1/24/2017):

Update:

I just received my “definitive” leg from my prosthetist, Rob, this afternoon.  There is one issue to fix on Wednesday and then I’ll be headed home to Wisconsin.  I cannot be more pleased with my new prosthesis.  Rob did a great job designing and building it!  What a tremendous difference in how it feels, the energy return that I get, and how easy it makes walking on inclines and uneven terrain.  It’s awesome!!!  And it looks really cool too!!!  Comparatively, the new leg is so much better than my old one!  The couple of times that I’ve had to switch back to my old leg, it felt like trying to walk with a solid log.  Combined with the changes I’ve had from Dr. Ertl doing my revision surgery in September 2016 (no back pain, no sciatic nerve pain, no residual limb pain), this will drastically change my life for the better!!!  

I still have a long road ahead of me.  It’s going to take some time for my limb to toughen up so the prosthesis is totally comfortable.  My muscles and joints need to be strengthened so I can take advantage of what I’ve gained (I lost a lot of muscle mass over the last two years).  I’ve also got to rebuild my energy levels and stamina.  But I believe that the pieces are finally in place for it to begin to happen.  That is a great feeling and gives me hope!

A few of notable moments on this trip:  1) I found out my ERTL bone bridge was broken when I fell on January 4.  Dr. Ertl said that since I was able to walk on it that it would heal fine, most likely even stronger.  On Monday (1/23) I had a standing weight bearing test done.  I was able to put 193 lbs. of pressure on the end of my residual limb (over 85% of my total body weight).  That’s an amazing indication that things are going well! 2) Over the weekend I was able to meet up with a high school buddy that I haven’t seen in 39 years (yes, I am that old).  Tim Kunzwieler and I got to catch up over a long dinner.  And I got to meet his wife as well!  It was an enjoyable evening.   3) I’ve been able to walk about 4-5 miles each day on my new prosthesis.  The only thing really holding me back is how sore the rest of my body is since it’s not used to that level of activity.  4) I was able to walk on a hilly trail in a wooded park area. That was so enjoyable!  I’ve missed being out in the woods!!!  With my new prosthesis I’ll easily be able to do that again on a regular basis.

I’m hoping that the winter weather that Wisconsin is currently experiencing won’t slow me down or cause any trouble getting home.  I’ve been gone eleven days and I’m ready to be home with my family.  Praying for a safe and uneventful trip home.

VIDEO Wednesday (1/18/2017)

Video Update: 

I was able to spend the day walking around town in my new prosthesis (in test socket mode).  By the end of the day, I had walked five miles!  I haven't been able to walk that distance in years!  I really love my new foot and the leg that Rob, my prosthetist, has built me.  

Going up inclines, up stairs, across uneven terrain, even just stopping and turning around is so much easier and feels more natural!