Friday, January 31, 2014

Update #3

Today marks Three weeks since my amputation, and seriously....this is the first day I have sat down in my home and done absolutely nothing.   I figured, why not a blog post?    The topic:   

Interesting little-known facts and info (from my vantage point):

  •  My toes get cold....yes, the ones that are not there!  Truthfully, it does feel as if the toes on my right foot are still there, sharing the love of our cold winters with the toes of my left, intact foot.  AND, since there is less surgical pain now, I am starting to wiggle those invisible toes of mine.
  •  Phantom pain....happens.   This has decreased significantly since the first week post-amputation, when I felt as if someone was squeezing my pinky toe with a pliers.  Other sensations would include feeling as if a lighter is burning under my toes, and having an itch on the sole of my foot that I can't scratch.  Luckily, these sensations have been short in duration (usually lasting fewer than 20 seconds.)  Now the most common sensation tends to be a buzzing feeling in my foot which can get annoying, but is not painful.  I continue to sleep well and symptoms usually do not keep me awake (this can be a problem for some amputees.)
  • People DO stare.  And that is okay.  I know people are curious.....and I would be curious too if I were them.  While we were grocery shopping the other day my daughter noticed that people were staring (I was oblivious).   I asked her if she was embarrassed....she said "No.  It's kinda fun actually."  (Jade had fun pushing me in the wheelchair....which we take when we travel outside of the house.  Too much snow and ice here in WI to take chances with crutches!) 
  • I kind of like my stumpy little limb.   That might sound really weird, but from a  [body] system perspective, it is like the part that requires a little extra TLC.....a massage several times a day, special attention to acknowledge when to rest, etc. Quirky....I know.  I guess you could say that we're getting to know each other.
  • Not all amputations are created equal.    Every amputee's experience is different.  It is tempting to lump all amputees into the same category, but truthfully there are HUGE differences based on surgery technique, levels of amputation, and folks' unique situations.    I never realized this until I began to talk with other amputees, and lemme tell ya....the amputee world is full of folks with amazing stories!   
  • The new prosthetics are amazing.....but one does not cover all desired activity.  Insurance will only cover a single "every day" prosthesis, and other (deemed) "non-necessary" prosthetics usually have to be paid for out-of-pocket.  Insurance expects that that one prosthesis should last for three years, and (not unlike healthcare) bureaucracy is hard to deal with.  So, realistically do you know what this means?   It means that while most folks look forward to getting a new car every few years or saving for a really cool vacation, we'll be looking forward to getting a new leg so I can continue to run around with my kids.   Yes....running prosthetics do run about the same cost as a new car.  (While I plan to apply for a grant, these are not guaranteed.)  So when you see us driving around in our 2002 rusted out SUV, remember this. 
  • The KNEE.....VERY important.    Recently someone inquired about my situation, and in the conversation, made the comment:  "Wow....and I thought my knee replacement was hard."  I responded by acknowledging that the knee is a crucial joint, and not being able to use it is much harder than having an ankle injury.    If you haven't had any knee issues, envision not being able to kneel or bend that joint when climbing stairs.  It's hard.  I'm lucky to have a good knee on my injured leg.....which is awesome.   Now I just need to protect the knee on my sound side (it is tempting to hop and overcompensation injuries are common.)    Furthermore, I have come to know folks who are above-knee amputees......a much more challenging situation in many respects (this touches upon how "not all amputations are created equal.")
  • The amputee community is awesome.    I learned this early on as I began to research my options.   I would venture to guess that what makes the amputee community pretty cool is the visible nature of the disability.....and the absolute need for peer support.    There are countless "issues" which arise with amputation, ranging from socket fit, to skin issues, to choice of prosthetic componentry, to coping with limb loss.   Whatever a person's concern might be, there is always plentiful information to be found from others who have "been there."   A HUGE BONUS is the fact that amputee humor rocks!!
  • This list is by no means exhaustive.    And I would invite others to share their "little known facts!"  

Friday, January 24, 2014

Update #2

It has been two hazy-headed weeks since my amputation surgery.....thought an update was in-order.  

Yesterday I had my two-week follow-up appointment with a recommended orthopedic surgeon.    He is an older, seasoned fellow who got his start as an orthopedic surgeon working in Vietnam.   He took a special interest in my case, since he has seen and performed a lot of amputations in his lifetime.  Much to my surprise, as he perused my before and after BKA x-ray images, he shared that he was happy to see that I'd chosen to end the limb-salvage two-year purgatory experience.   He noted: "You know, a lot of surgeons view amputation as a kind of failure.  I've seen so many people become fixated on saving the limb that they lose sight of its purpose of function-ability...many times it had been lost long ago, but for some reason they don't want to amputate.   The prosthetics out there today are amazing....good for you that you found this out early without going through years and years of heartache."   I thanked him for his professional opinion, and explained that my experience had taken me to consult with lots of medical  folks....some of whom did not share his same impression.    He smiled and commented about how medicine has changed over the years, making these decisions much more complicated because of the new technology available.  

The Upshot:  Everything looks good.    I developed a small hematoma (bruise) on the medial side of my incision shortly after the surgery, where my gastrocnemius muscle was pulled under and reattached.    Apparently this is quite typical and nothing to worry about (it is just a little red and

My x-ray:  Note bone bridge between tibia and fibula with
bone-graft material, and muscle padding at the end.
inflamed).   The incision looks good and has mostly closed/healed....although the good doc prefers to wait until the hematoma has cleared, as disturbing the tissue could open up an area where infection could set in.   

I've got another appointment in a little over a week
to have the stitches removed.  This will mark three weeks post-surgery.   Generally if all goes well, folks begin prosthetic fitting with a temporary socket / prosthesis between 6-8 weeks after amputation.  (Timing to receive the permanent / definitive prosthesis varies and is greatly dependent upon changes in the residual limb.   Obtaining the right fit is critical and it is always best to take plenty of time making sure all of the tweaking is done prior to getting the definitive socket.)

While leaving my appointment with the orthopedic surgeon, he brimmed like an excited little boy who was proud of something he had learned as he said to his nurse in the hallway , "Hey, I've seen an ertl done by Dr. Ertl.   I studied the Ertl procedure a long time ago and had used the technique, but I've never actually seen the outcome of one of these done by one of the guys in the Ertl family."  I commented that after talking with a lot of folks,  I wanted to be as convinced as possible of the finality of the limb-salvage trial-and-error experience, and in the ability to move on and get my life back.

Recovering at home has been about as pleasant as one could hope for.   Lots of good pain meds, family providing lots of comic relief,  wonderful, caring people dropping by and calling, and loving meals prepared and brought over  by so many thoughtful, compassionate folks.   I have been overwhelmed by all of the support and encouragement that has poured into our home.   

Pain-wise, I've had some post-surgical pain and cramping, as well as some phantom pain....although that has diminished  substantially within the past week.  (Phantom pain has consisted of feeling like a pinching of my [nonexistent] pinky toe, burning of the front of my [nonexistent] toes, and itching of the bottom of my [nonexistent] foot.)   Often I will feel a sort of transitory "buzzing" feeling in what used to be my foot which is a little weird.   The most noteworthy sensation in terms of my transition experience (from right limbed person to amputee) has been in my daily typical fingers-to-toes morning stretch.   Imagine what happens when you try to point your toes that are no longer there with newly transected, surgically reattached muscle.   Yeah....Owwww!   I now try to do my morning stretch in a 3/4 body-fashion, in order to avoid major crampage and calf pain.  (Dr. Ertl did mention this is also common and that it obviously hurts.) 

I am deeply thankful for all of the encouragement I have received from people as I've shared this journey.   Believe it or not, that encouragement helps to fill my tank and keep me going.   I hope to be up-and-about by the time the snow melts.  (Although here in Wisconsin, that could be as late as May.)    Keep sending good energy!

Wednesday, January 15, 2014

The Survivor Tree

Ever have one of those moments where you're overwhelmed by something that speaks to what I call your rightness in the universe?   I sounds very Shirley McClain, but as I begin to slow down and pay attention to the richness of moments, I begin to notice things I may have not noticed before.   Today, at our visit to the Oklahoma City Memorial, I was seized by one of such moments.

Being a survivor of trauma, and visiting a place which embodies the meaning of trauma, I was overcome by emotion as I sat below the  Survivor Tree.   After withstanding  the blast of the bombing in 1995 and burning for several days, this tree still stands as a symbol of human resilience, hope, and rebirth.   Despite the 4,000 lb. bomb which killed 168 people and injured hundreds, the tree continued to struggle for survival.  With the help of the community, the health of the tree began to improve.  Seeds were taken and seedlings were grown.  The Survivor Tree has re-birthed hundreds of offspring which serve as reminders of the undeniable life force within us.  

The tree continues to thrive....

  As I began to think of a theme for this blog, I scoured the Internet for images depicting hope and resilience, with a particular focus on the limb, as this has been an element of my grieving and my striving for acceptance.  Sadly, no image emerged which seemed to fit.    Today as I sat below the tree and looked up, I found it. 

There is life after loss.   The life-force within us propels us to press on and to nurture each other as we grow.

Survivors of all types....we know this.  The moving on is bittersweet, but it is ripe with possibility.  Having risen from the ashes, like this tree, we just keep going.....reaching for the sky

As I move forward in my journey with limb loss, I look toward a future of possibility, and a chance to share my passion for adventure with others with disabilities.   When faced with significant life-challenges, we can shrink back from life, wither away, or embrace our challenges as unique opportunities for connection.   Herein lies my passion.....harnessing hope and connection, and finding meaning in shared life-enhancing experience.  How cool is that?

(NOTE:  I will do an update on my medical stuff soon!  Just needed to get this post out first....the timing was right.)

Friday, January 10, 2014

Update #1

Attempting to do my first update on the blog.....head is a little fuzzy but we'll give it a good ol' try. 

Yesterday I underwent an osteomyoplastic trans-tibial amputation.   With the exception of a potential pregnancy scare (false positive in the urine test) the procedure and recovery was uneventful.  Looking back I find that pregnancy scare quite comical....I mean, really?  A 45 year old lady in for an amputation...pregnant?!?   

How did it feel to wake up and see the leg gone?   Surprisingly, very good.    The day before was spent meeting w/ Dr. Ertl and the rehab team to discuss my goals and expectations, and they're all of the mindset that amputation is the beginning of an exciting rehabilitation journey.  A journey which will hopefully lead to getting me back to doing the things I love.  

Through talking with the team, I learned that Dr. Ertl actually developed and fine-tuned his surgical approach in consultation with a fine prosthetist, Jonathan Day.   It is important to realize that not many surgeons do that kind of thing.   They generally make their decisions through the protocols which they know and are comfortable with.  So when a surgeon takes the opportunity to learn from another professional ( humble enough to consult), and work collaboratively, good things happen. 

Physiatrist, Dr. Carol Dionne is also on the team, and her job is to consider the "whole person" in her approach to recovery.   Dr. Dionne has a specialization in spinal injuries, so she was quick to bring up my SI joint fusion, and how this next step will be very beneficial for me to  equal out my limb-length discrepancy.   The entire team talked about the importance of a good prosthetic leg as it relates to my other orthopedic injuries.   

What impressed me the most was the sense of camaraderie among the team, and attitude of excitement for my being active again in ways that I haven't been able to be in over two years.
Post-op with Dr. Ertl.  He left a nice, 10 in below knee residual limb.
Physically, the experience has not been a walk-in-the-park.   I have an epidural right now which helps tremendously with post-op pain.   I don't like this epidural, but it is better for pain relief than anything else.    I've had a few occasions of breakthrough pain, and have been given a PCA (patient controlled analgesic) pump with dilaudid for those times.   

Our hope is to remove the epidural sometime tomorrow and switch to oral, longer lasting pain medication.  Fingers are crossed that goes well!

What was particularly cool was the fact that the third doctor I had sent my medical records to (at Georgetown University Hospital), called about a half-an-hour before my pre-op assessment.  He was happy to hear that I had moved ahead w/ the BKA, and in fact, was recommending that I have the Ertl amputation procedure.   (Said he wants to see pics of me "doing my thing" once I'm in a prosthesis.  

Thankfully we were able to Skype with the kiddos and Uncle far the house is still standing!

Thanks so much for everyone's support and encouragement!    It means SO much!  

Wednesday, January 8, 2014

New Chapter...

There's a huge relief in the act of letting go, especially for a tough-ol' pit-bull type of woman like me.  It is an odd mixture of emotions, I'd say.....somewhere between admitting defeat and ease of being okay with the world.   And as I really ponder, I am struck by the fact while that this "okay-ness" has something to do with the knowledge gained with research, confidence in my treatment team, and the resignation which comes from just being plain tired, a greater part of this "okay-ness" comes from the strength and energy I have received from others.

 It has been a gift, really....something I never would have imagined needing, as I'd always prided myself in being a strong, independent type.   It is tough to admit "dis-ability." I think somehow, our
 culture has morphed the concept into a dreaded lot-in-life to be avoided at all cost, as to admit it would equate with throwing-in-the-towel.   

The truth I have found however in coming to embrace this new life I'll be facing, is that the inner drive to overcome, and that drive to keep on, keeping on is amazing.  It is a STRENGTH.  As I have shared my struggle and this journey, I feel honored to have met so many others overcoming obstacles of all types.  There is really something quite sacred about joining together in this space....something which is deeper and more real than anything I have ever experienced in my lifetime until this point. 


It is with a grateful heart that I'm moving forward with this huge life-change.  I am grateful for all those who have also shared how they have risen from the ashes, and have shown me the view from the other side.  
I know there's a long road ahead, but this is the beginning of a new life, and I've found some great fellow-travelers.  I'll be looking for more....there's a lot of life out there to explore!

Friday, January 3, 2014

How DO you say "goodbye" to a limb?

They say that the experience of losing a limb is similar to that of losing a family member.   When I heard that initially, I was somewhat skeptical, as I wondered just how the comparison could be made between a living, breathing, talking person and a physical extremity / body part.   The closer I get to this loss however, the more I understand the comment.
The longer I think about it, I realize that for me, losing this limb is kind of like losing an estranged spouse.   
I'm hesitant to pull the genetics card (since my kiddos are adopted), but in my pondering recently it has occurred to me that I have sort-of inherited an athletic legacy.  My dad is, and was a legend in my hometown for his sports capabilities, and folks will commonly recall that I'm "Randy's daughter".... the guy known for his home-runs, high school football and basketball involvement, and "hall of
famer" in the city's softball history.  In his 70's, the guy still has a mean golf-drive and is the envy of the guys on the golf course.   So....I guess I realized at an early age, intuitively, that my body and I had a good relationship going.   My legs were obviously part of the deal.

In high school, I did well in track and diving...participating and placing in the state meets.  I was fast and could jump....and I had an awesome toe point (something you don't usually think about much unless you're a diver or gymnast, and obviously, when you think about the things you'll lose when you lose a limb.)

When I met Scott, we shared an interest in sports and the outdoors.  We enjoyed being active together and had dreams of being an active family.    It was fun coaching my daughter's little tyke
 soccer team and teaching swim lessons at the YMCA.  When Kai came along, we began rock climbing as a family (I found it taught our children patience, tenacity, and how to use their bodies to reach a goal.  It was / is a particularly good discipline  for our son who tends to want to "check out" mentally, as it keeps him focused and in the moment.)     Kids are naturally little monkeys and love exploring, so these interests naturally became a big part of our family's activities.   We love, love, love the outdoors!

Since my accident, we have done our best to continue this lust-for-life and adventure.....although watching my family participate in many things without me has torn at my heart.  It is amazing how you can really miss an ability once an injury has taken it from you, and sitting on the sidelines is incredibly depressing.   Until the last two years, I had really taken for granted all of these abilities, and have come to appreciate some of the smallest, such as walking, the most.

In less than a week, I will be saying farewell to my right foot.  Damn that's hard.   But in doing this, I
know that I'll be able to regain a lot of what I have been missing, and I'll gain a huge, important part of my life back.  

What are the things we say as we begin to part with something / someone who is a big part of who we are?  

In my case,  looking at this cobbled-together ankle/foot....I say "You're not who you used to be."   Truthfully, it has been very much like going through a divorce!   :)   To this limb, I've said:  "You're causing me too much pain.   You're holding me back from being the person I know I am and can be.  You've changed....and you're never going to be what you were. You WERE awesome!  We had a good thing going, you and I."  

But the closest thing I can get to the "me" I know and love...the active "me", is to let go of this bad relationship.    It is the equivalent of having spouse who wants to lay around all day and be a couch potato (pain and limited function will do that to a person.)   Functionally, prosthetics will offer a huge improvement.  That said......

There are things I know that I will absolutely miss.  I grew up playing on the shores of  Lake Michigan, spending the day in my swimsuit and jumping over the waves.   While there are a lot of cool prosthetics that function in awesome ways, (running, climbing, etc.) none can offer the kind of foot that can feel the sand between your toes or run and jump over the waves....yet (I've thought about this a lot, actually....but then realize that realistically I don't do this often anymore anyway.)  

My sister used to give me a hard time about my ugly feet, and my family would laugh about my talented, flexible toes as I'd hold a spoon between them and feed myself  (I know...we're a strange family.)    Because I'm right-side dominant, my right foot was obviously considered the more talented one.  If I had to fall and crush my tibia again, I'd pick the left one.  Ah well.  

As one begins to realize any relationship is a total drain, still, the process of moving on is hard.  It is not really possible to just "cut it off" and not have that person with you in your heart forever.    STILL, sometimes we need to make that cut so we can move on.   (Aren't you lovin' the awesome metaphors!?

To say "goodbye" to this limb is bittesweet.   I think folks who suffer a traumatic amputation are usually left shaken and painfully robbed of a very important part of them...similar to losing a loved one very suddenly.  And I assume that that grieving is done very intensely at the time their loss is realized.  But for folks like me, this ankle has been more like a painful, aching tumor....and while hope was given throughout the long treatment period through lots of surgeries, hopes, and broken promises,  there has also been a prolonged grieving period.  A feeling of: " hey, I've already lost it....she's not coming back."  (the function-ability of my leg, that is....not my mind!)  

Sudden or gradual.....loss is not easy.   
....but there is life after loss.   I've met dozens and dozens of amazing amputees....all with incredible stories.  They're all back to DOING WHAT THEY LOVE...   I want thatI'm psyched to get that....back!    So is my Family....

....I guess, this is the best way to say farewell....