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.