Is it Time to Make a Change?


Ok, first, I have had SERIOUS writer’s block! Which, in a sense, is probably not a bad thing for someone who writes a blog about learning to live and laugh as an amputee. It means that life has been uneventful (at least as far as the amputation goes). However, it is not fair to my readers, especially those of you who have been with me since the beginning. I have tossed around ideas, but nothing really stuck out and I kept slacking….until Tuesday. I went into the Prosthetist and met a woman in the parking lot. She and I have met via email, but never in person. I was THRILLED to bump into her! I wrote about her on May 5, 2012 in “Introducing Cupcake”. Scooter is a 70+, spry and hysterical woman, who also happens to have a residual limb named “Cupcake”! She told me she noticed it had been a long time since I had written. She told me she kept checking but there was nothing new. She also called me out on my last blog being a re-run of a past blog. I decided I better get my butt in gear and WRITE. I did not want to upset Scooter or Cupcake! So here it is!

I have noticed on a lot of interactive amputee support websites, the words, “look for a new Prosthetist” are thrown around a lot. Of course, there are times when a new Prosthetist is your best….or only choice, but I think too often, we jump the gun. Our care is not something the Prosthetist should bear alone. He/She needs our participation in order to properly do his/her job.

I have heard people say, “my Prosthetist didn’t give me any options” or “my Prosthetist didn’t tell me that” or “my socket doesn’t fit right” and the list goes on. My question is, how involved did YOU get? Did you ask what your options were? Did you ask questions? Did you give the Prosthetist a list of what you wanted and didn’t want? Did you take your time with the test socket and insist on changes? Or did you just sit back, complacent, and expect your Prosthetist to read your mind?

Don’t get me wrong. If your Prosthetist tells you that you “have to” get a certain product and doesn’t give you any other options or does not listen to you, then yes, you may want to find someone else. If you tell your Prosthetist that you are in pain or having issues with your prosthesis and they tell you “that is just how it is”, then yes, find someone else. But if you are not interacting and participating with him/her or being a little demanding, your issues are just as much your fault.

Here is an example. I got a new socket a while back. It just never seemed right. I had multiple issues including the fit, pain and the prosthesis making odd noises. My Prosthetist, Rich, tried multiple techniques to fix it and finally, in December, instead of settling or giving up, we decided to just start over with a new one. I have been wearing a test socket since January. Everytime I would say, “we still haven’t gotten it right”, I would hear from friends and other amputees, “maybe it is time to find a new Prosthetist”. My response, “NO WAY!” Rich LISTENS to me. He is willing to keep trying until I am 110% happy. That is NOT a Prosthetist you toss away. If your Prosthetist decides to give up and says, “there is nothing more we can do”….that one needs to be traded.

Part of my pain issue is due to a neuroma, which has nothing to do with Rich or my prosthetic. Instead of telling me it was not something he could help me with and I should see a surgeon, Rich made it his mission to design a socket that did not press on the neuroma and was more comfortable for me, so I could avoid surgery. Guess what? He did it. But I had to help. I had to be insistent. I had to put my fears, feelings and frustrations into words. I had to believe that “good enough” was NOT good enough for me. I had to be aware of my body, where the pain was and what it felt like. I had to put all of these into words to explain to Rich what I was dealing with, so he could help me.

Friends, this goes for any medical provider. They do not know how you feel unless you tell them. Most professionals are in the medical field because they want to help people. However, in order for them to help you, you must help yourself first. No one will ever be a better advocate for you than YOU. Just because something hasn’t been done, does not necessarily mean it CAN’T be done.

As I shared in “The First Four Months”, I wanted a great ankle, that moved like a regular foot, making walking look more natural. I decided on the MotionFoot. There was only one issue. I was insistent on a split toe so I could wear flip-flops. It was not something I was willing to give up. This ankle was not designed with a split toe and I was told I would have to choose between split toe OR the MotionFoot. I said that was not acceptable. Rich, being a great Prosthetist, agreed and contacted the company. He said, “what will it hurt?” Imagine our surprise when they said they had tossed around the idea of designing one with a split toe. They said if we provided them with a foot shell I liked, they would make a foot for it. So here I am, with EXACTLY what I wanted, because I asked and I have a Prosthetist that listened.

So is it time to make a change with your Prosthetist? That is entirely up to you. But before you make the decision, ask yourself, “Am I being as involved as I should be?” The answer may surprise you.

Thank you for your patience with my writer’s block. I am always open to suggestions! Send me your ideas!

And as always, thank you for allowing me to be part of your day!

Memorial Day Revisited


because of the feedback I received, I have decided to re-run the blog that appeared last Memorial Day. Enjoy!

Today’s blog is a combination of rant and education. If you do not want to hear a rant, learn anything or hear the word God, I suggest you stop reading now, otherwise, here I go.

For days, I have been watching postings on Facebook (these are real) that say things like, “YES! A three-day weekend!”…..”Woo hoo one more day to party”…..”Thank God, an extra day to relax”……”Can’t wait to go camping and hang with my friends all weekend”…and the list goes on. What I haven’t seen are many comments on what today is REALLY about. Today is MEMORIAL DAY. It is a day to remember and honor the heroes who have fought and given their lives so the rest of us can enjoy the partying and barbeques and camping and extra day off of work or school. I am not without fault. For years,I too have looked at today as a “day off”. I am not quite sure what has changed. It may be the beautiful woman I have recently become friends with. Ashley raises her four kids primarily by herself as her husband while her husband, who is a submariner in the US Navy, is gone 3-6 months at a time, never quite sure where he is, what he is doing or when he will be back home. It may be my brother who was a United States Marine and shared stories with me of a young man seeing and doing things no one should face. It may be communicating with many servicemen and women who have become single, bilateral, trilateral and even quadruple amputees as they serve and protect. It may be my son, who was going to join the Military after high school. We met with the recruiter and I was terrified. He has decided to wait until he graduates college to join, which gives me four years to read stories and let the stress and worry build. It may be a combination of things, but whatever it is, this year, I woke up and prayed. This year, I decided to dedicate my blog to those who have made the ultimate sacrifice.

I found a website (http://usmemorialday.org/intro.html) that said the following: “This site was created to help promote the return of the original intent and meaning back to Memorial Day, to be a central point for finding information on the day, and to provide an online community for people to share their feelings, pride, respect and honor for those that gave their all…..Memorial Day started off as a somber day of remembrance, a day where we in America go to cemeteries and place flags or flowers on the graves of our war dead. It is a day where we remember our ancestors, our family members, our loved ones who have given the ultimate sacrifice. But now, too many people “celebrate” the day without more than a casual thought to the purpose and meaning of the day. How do we honor the 1.8 million that gave their life for America since 1775? How do we thank them for their sacrifice? We have 364 other days to celebrate and enjoy the freedom and life that we have because of their sacrifice…..it’s only by actions that we can repay those who have come before us. Let us take just one day to remember.” As I read these words, I felt somber, as the meaning of this day began to truly sink in. I also felt guilty about all the years I never even acknowledged what Memorial Day was about.

The number of fallen soldiers given above stunned me. 1.8 million people dying so we can truly live? Granted, that has been since 1775 when medical care was poor and battles were more primitive. The numbers of fallen soldiers had to decrease over time….right? The only way to find out was to research it. Part of me wishes I never had looked for the information. What I found made my stomach turn. I typed “how many us soldiers have died in Afghanistan and Iraq?” The number of links that appeared was unbelievable. I didn’t even know where to begin. As I looked at different sites, I was absolutely stunned and then I came upon the Washington Post (http://apps.washingtonpost.com/national/fallen/?page=1) and the tears began to well up in my eyes. According to this site, “6,648 U.S. service members have died in Operation Iraqi Freedom and Operation Enduring Freedom”. While seeing that number is shocking, seeing it broken down the way this article does it makes the reality really set in. There are break downs by state, year, age of the servicemen and women, service branch, cause of death and location of the death. If that is not enough, not only does the site give a picture of each solider, but clicking on the picture gives you the specifics on each of them. It is absolutely surreal. I spent an hour clicking on pictures and barely put a dent in it.

I am not saying that today should be a day filled of being somber and depressed. I do not believe that is what these soldiers would want. They fight for freedom and we SHOULD celebrate that today. We should enjoy our lives, our family and our friends. However, we should also remember why we are able to do that. Take the time today to explain to your children the true meaning of today. Call a Vet and thank them for their service and protection. Take a moment of silence to remember those who have fallen and to pray for those who still fight. Think about the words of Lee Greenwood (in the song God Bless the U.S.A)

I’m proud to be an American
Where at least I know I’m free
And I won’t
forget the men who died who gave that right to me
And I gladly stand up next to you and defend her still today
cuz there ain’t no doubt I love this
land, God Bless the USA.

Toby Keith

Toby Keith

Please be safe and enjoy your freedom today. And as you think about the true meaning behind today, be proud of the men and women who have fought for your country, whether it be the United States or outside the United States.

As always, thank you for allowing me to be part of your day!

Lindsey’s Story


This woman is amazing! She is smart, beautiful and has a sense of humor that may be more warped and twisted than mine! We met on Pinterest of all places and became fast friends on Facebook. I feel blessed to know her. Lindsey, from the United Kingdom, is a make-up, airbrush and nail artist who also happens to be a bilateral below the knee amputee.

lindsey sitting

Lindsey was on IV antibiotics for 4 years as she battled a bone infection in both of her feet. After discovering that the infection was not getting any better, she chose to amputate her right leg in April of 2012 and her left leg followed in August of 2012. After the amputations, Lindsey wore cosmeses (“flesh” covering) on her legs. Just before Show Your Mettle Day last year, she told me that she had been thinking a lot about WHY she was covering her metal and decided to have the cosmeses removed.

This was one of Lindsey's cosmesis covered prosthetic legs.

This was one of Lindsey’s cosmesis covered prosthetic legs.

Lindsey recently told me, “I’ve been showing my metal since May 2013 and it feels great! Since stripping the cosmeses off I have been like a new woman! More confident and kick ass than before!

lindsey chair

lindsey Family

I LOVE this picture of Lindsey in her custom-made "stump warmers"

I LOVE this picture of Lindsey in her custom made “stump warmers”

My first Grandson, Oscar was born shortly after my first amputation and I look after him whilst my daughter and son-in-law are at work. He keeps me on my toes! I am a peer mentor at my local hospital and love meeting with amputees new and old, sharing stories, alleviating fears and smoothing the way. I’m so very fortunate that I met you Lisa, you have helped me through so much of my journey and are a constant inspirational to me and so many others”.

lindsey boardwalk

And I am honored to have people like Lindsey, who help make my journey easier as well.

As always, thank you for allowing me to be part of your day!

Dawn’s Story


As you have seen this month, I have become very good friends with many amputees whom I have yet to meet. This next person is an exception. Not only have we met, but I consider her one of my dearest friends. We met through our mutual Prosthetist, Rich Wall. Dawn and I were introduced in the waiting room of the office and immediately became close friends. We text almost daily and get together for lunch at least once a month. We even went shoe shopping last week. Our friendship developed quickly. Yes, it began over the fact that we are both amputees, who adore our Prosthetist, but it turns out we have so much more in common, including our love for Vampire TV shows and our VERY twisted sense of humor. I absolutely adore her and I know you will too! This is Dawn’s Story in her own words.

Dawn and I with our Prosthetist Rich.  He was speaking at a Career Day and we got to be his "show and Tell"

Dawn and I with our Prosthetist Rich. He was speaking at a Career Day and we got to be his “show and Tell”

I was born missing both tibias and had my amputations at just over a year old. This has been all I’ve known, since I learned to walk in my first pair of prosthetics. As you can see in the photo, they’ve come a long way. My first pair didn’t even have a bendable knee. The photo of me wearing my second pair of legs, you can see had a knee, which was really just a hinge. There were metal bars attached to a belt around my waist to keep them on and I wore stump socks between my legs and the sockets. There were bulky, fell down a lot and I was constantly hiking them up. It’s difficult to be inconspicuous when your hand is down your pants and you’re trying to fish a stump sock up. That was pretty much how all of my legs were until I got my first pin suspension sockets in 2002.
dawn legsdawn little girl

I didn’t have the support that is available today or any peers to talk to about being an amputee. I just figured it out as I went. I’m usually very positive but I’ve had plenty of melt downs and still do at times. It’s so nice to have some friends out there now to talk to (especially you Lisa, my life has been enriched knowing you), laugh about the absurdities and know that they really understand.

I wear my stubbies when I’m at home and also out in the woods walking my dog. Yes, people are usually shocked when they’re out for a hike and come across this short person who looks like she’s walking on her knees. I also wear them out kayaking, one of my favorite hobbies (the photo below is during a day kayaking, stopped on a little island for lunch).

At the beach in her stubbies

At the beach in her stubbies

Dawn in her stubbies at home.  She describes it as "being in slippers"

Dawn in her stubbies at home. She describes it as “being in slippers”

I do face other struggles as a result of my amputations. Long story short, I had a bad fall landing all my weight on the end of my stump and ended up in a wheelchair for several years. Being inactive for so long, gained weight. I wanted to lose the extra weight before having new legs made. A year and a bit and 65 pounds lighter and I got the legs I wear today. They are the most comfortable and sexy legs I’ve ever had.

Dawn in her newest legs (and you can see by her shirt, she has an awesome sense of humor!)

Dawn in her newest legs (and you can see by her shirt, she has an awesome sense of humor!)

I’m proud to show my metal and my mettle. I rarely have a day out without being approached with questions, comments or just a thumbs up. I also love being a peer visitor and helping when I can. Not having had that myself I know just how important it is. Things happen and instead of taking them too seriously, I usually see the humor in it. How can you not laugh about breaking down in the middle of an intersection wearing stubbies and my husband’s underwear. I can pretty much guarantee that tow truck driver will never have another story quite like it.

I do also struggle with other medical issues as most of us do but I still wouldn’t change any of it. I’m not one to dwell on ‘why me?’… Why not me? Am I helping anyone just by being me? I don’t know but I hope so. :-)

Bill’s Story


The stories I have posted so far, are all people who have started off as readers and have become friends. These people and their stories remind me that I am not alone and I am not the only one who has had to face pain, suffering, trauma and self-doubt. Bill is another person who started as a reader way back at the start of my blog. He is another shining example of strength and perseverance. Below, Bill shares his story.

bill3

I am from the eastern shore of Maryland, a little town called Denton. I had a total of three knee replacements. After the first one, my bone started to deteriorate so the doctors had to do a second knee replacement. That lasted about two (2) years and then the components came loose, so they did a third one. Ok, so then the third knee replacement got infected! At that point, the doctors said I had three (3) options.

The first option was, I could simply live with the infection. Haha! Like that was a real option, aye? The second option was, I could have a rod put in my knee and I would be stiff-legged, which meant I would not be able to ride my scooters. Plus, there was no guarantee that the infection would not come back. So, that was not really much of an option either. Then they said that the last option would be to amputate. I had already pretty much decided to tell them to take my leg because I was sick of all the operations and pain I had been through, so that option seemed like the only one. On October 13, 2010, away it went and I became an above the knee amputee.

bill2

I started riding my scooter about 4 short months after they took my leg. I have been very lucky I have only had one small bout with depression and that was just a little bit….about 30 minutes…and I was done with that. I have struggled with trying to get a leg to fit right and feel right but so far that has not happened, so I still use crutches to walk. Other then that I am doing well. I am happy that I get up every day.

bill

As always, thank you for allowing me to be part of your day!

Trevor’s Story


April is Limb Loss Awareness month.  Over the past two years, I have met some amazing people who started out as readers, shared their stories with me and eventually, became dear friends.  Trevor Montgomery has not only become my friend, but my hero and inspiration as well.  This is Trevor’s story in his own, unedited words, written April 14th of this year.

 

t1

Today is a very difficult, bittersweet day for me and my family. Today is the day my life changed so drastically eight years ago and my life has truly never been the same since.

On this exact day, at this exact hour, April 14th 2006, I was with my family and several other families on a week long camping/riding trip at the Calico Ghost Town off the 15 freeway near Barstow. During the first hour of the first day we arrived my life and my body were shattered in a way I have still yet to fully recover from.

While taking a break from riding OHV’s with my children, I inadvertently stepped into an abandoned, unmarked 4′ x 5′ mine ventilation shaft in the ground that dropped over 90 feet to a ledge, where my broken and battered body landed and came to rest.

Over the next 10 1/2 hours I layed at the bottom of that mine shaft, assessing my injuries, wondering if I would ever be rescued, thinking about what kind of future might lay ahead of me. From my decade working as an orthopedic specialist in the Army, I knew I had broken my back. My left foot was nearly completely severed and I knew I was paralyzed. I had also broken dozens of bones in my feet, ankles, legs, ribs shoulders and much more. As I lay there, broken, battered and clinging to life in the pitch black of that hole, I wondered if I would ever see my wife Robin or my children again, who even back then numbered nine at the time.

Thankfully I was successfully rescued after three different mine rescue teams were flown in from around the state. the rescue alone took nearly two hours. Once rescued I was taken to Loma Linda Hospital, where I lived for four months while recovering from my grievous injuries. After more surgeries than I care to recall, countless doctors and surgeons began the process of trying to explain to me that between the fact that I had broken my back in four places and suffered severe spinal cord injuries as well as the fact I had sustained a traumatic brain injury, their prognosis was that I would never walk again, nor lead any semblance of a normal life. Every time a doctor would say this my wife would angrily and quite physically throw each and every one out of my room and ban them from ever returning. Let me tell you, we went through a whole lot of doctors that first year.

Four months later, I came home as a paraplegic, pushed into my newly transformed “handicapable” home in my wheelchair by family and friends and I assumed that was to be the new life God had given me. I accepted my fate the best I could, but depression, frustration, furious anger, drug-induced confusion, long days and even longer nights were what lay ahead of me those first ten months. The pain was unbelievable and my poor broken body caused me more pain, grief and suffering than I had ever thought possible. Learning to re-live life as a paraplegic, my body seemed to be working against me at every possibility. I was on nearly 30 different oral medications as well as multiple I.V. antibiotics and medications. Robin became my full time nurse, caretaker and provider and life as we knew it seemed like a long lost distant memory. Thankfully, it turned out it wasn’t.

Just ten months after my accident, I realized I was starting to sense movement in one of my toes. My new goal in life was set and I was like a man possessed. I was GOING to walk again. I spent every moment of every day doing every amount of in-home physical therapy I could muster the strength to do. I would lay awake at night working around the clock at forcing my brain to make the reconnections necessary in my damaged nerves and spinal cord to be able to someday rejoin the “real” world and the actual living.

In July 2007, just 15 months after my terrible accident, I returned back to work full time as a sheriff investigator. I had impossibly beaten the odds and proven to every doctor that miracles could and do happen. I was on cloud 9 and nothing in the world could have brought me down or slowed my progress. Or so I thought. Unfortunately, just nine months after returning back to work, repeated bouts with MRSA and bone infections caused my left foot and ankle to completely collapse and I ended up having the first of what would be two separate amputations of my left leg. First at the below knee level in 2008 and then again later in 2013 at the above knee level. Additionally, in 2011 my spinal fusion, which doctors had used to repair my destroyed back completely failed, causing me an additional 15 months down in bed, first waiting for and then recovering from yet another, much larger and stronger spinal fusion. From September 2011 through December of 2012, it would be 15 full months before I would have the opportunity to be up and out of bed again.

Nowadays, I still deal with severe back pain and gastrointestinal/bowel issues related to the injuries and problems from my original spinal cord injury. Some days I feel it is all I can do to hold on for the better days that I can barely keep faith might someday show themselves again.

However now, eight long years later, I can honestly say despite all I have gone through I am the happiest I have been in nearly a decade. In spite of everything, I am actually healthier (most days) than I ever was before and I finally feel like my life is slowly inching closer back to the normalcy I so desire and miss.

In spite of it all, I have learned to accept myself and I actually love who I have become since my accident. I feel I have truly learned to love both myself as well as my life and my family. I am far more optimistic nowadays and I find much more true joy in the small blessings in life. In spite of all the bad things that have happened over the last decade, I feel as if I have grown leaps and bounds as a person, a husband, a father and a friend. I truly hope and pray I have gotten through the absolute worst parts of my lengthy recovery, however regardless what God allows me to endure I now know I can overcome any obstacle.

I now have 13 children who call me dad, each of whom I love dearly and I have three grand babies I absolutely adore and never otherwise would have gotten to meet. If things go well and if I get my way, I might even soon be re-joining the ranks of my fellow law enforcement officers, although never again in the full capacity I used to provide, and that is OK…..life is all a process of constant change and hopefully positive growth. I have learned to embrace my injuries and limitations and more importantly, I have found a new way to love my life and all those in it again. I ALMOST feel like I am actually living again. I am close and getting ever closer.

For those of you who live with my mood swings and medical issues yet still love me, you are saints. Each and every one of you. For those of you who follow my daily dramas and rants, comment or laugh with me at my posts and listen to my (hopefully only occasional) bitching, I love and appreciate each and every one of you. For those who argue with all my posts and offer a diametrically opposing point of view from my own, I thank you for helping to re-sharpen my mind and thought processes after years of letting my brain turn to mush from taking the worst, most hardcore and toxic meds you would never want to have to absorb into your system.

It has truly been a very long eight years. But thankfully I feel have come a long way even though I still have a long way to go.

Having a strong support system is as important as having a great prosthetist or surgeon - Trevor definitely has one

Having a strong support system is as important as having a great prosthetist or surgeon – Trevor definitely has one

 

Thank you Trevor for sharing your story.  I will be posting more inspirational amputees’ stories this month, along with some other information to help educate people abut limb loss.

As always, thank you for allowing me to be part of your day!

Life is Like Vegas


I had every intention of writing this a few weeks ago, but I ended up really sick and in bed for 15 days!  My goodness, it seems to be a rough year for all the amputees I know!  I am interested to hear if it has been for you as well.

On March 19th, Michael and I caught a red-eye to Las Vegas for an extended weekend getaway.  This was a huge trip for me and I was so excited to come home and share it with you! You see, the last time we were in Vegas was three years before (February of 2011) and the difference between the two trips was night and day!

In December of 2010, I had what would be my 19th and final surgery to attempt to fix my ankle.  I had my artificial ankle (the second one) removed and my ankle fused.  I was still in a cast up to my knee and spent the majority of the trip in a wheelchair.  The trip started of on a bad note before we even left Seattle.  I was wheeled through security and they did the standard test of my chair and cast for explosive residue.  Michael was already through security waiting for me.  Imagine my surprise when out of nowhere, I had a half-dozen security people surrounding me!  It turns out my cast tested positive for the explosive residue.  Obviously, as they started questioning me and talking about removing my cast, I was in a bit of a panic and searching for Michael, whom they refused to let back to me.  Finally, a man who I assumed was the supervisor came over.  He looked at me in the chair, tears rolling down my face and insisted they bring Michael to me immediately.  He bent down to my level (everyone else stood, looking down at me) and very quietly asked, “Does your foot get really dry from your cast?”  I was a little confused, but nodded yes.  Then he asked, “Do you put lotion on it?”  Again, I shook my head yes, still having no idea where he was going.  Finally he asked, “Is your lotion from Bath and Body Works?”  Michael and I looked at each other, totally confused, but I answered, “Um, yes it is”.  The man then said, “Let this poor woman go!”  He explained to me that Bath and Body Works lotion gave a false positive reading quite often and he was unsure why.  He had someone rush us to our flight and I have NEVER worn lotion when I travelled since!

Once we got to Vegas, we realized it may have been a mistake for a vacation.  Poor Michael had to push my chair up and down the strip.  We tried to see shows, but it was difficult to get seating for the chair and crutches were too much trouble to bring along.  I couldn’t even gamble, because the tables were too high and there was no place to put the chair.  I spent all my time in the casino at the slots, which I don’t really like, wishing I could play Blackjack. We couldn’t go to the pool because my cast was so hot and couldn’t get wet. Even going to exhibits and the wax museum were a bit of a bust because everything is at standing eye level, not sitting eye level! Michael ended up needing naps everyday because he was so exhausted from pushing me everywhere. I was miserable.  He was miserable.  Yes, there was some fun, but for the most part it was just more trouble than it was worth!

Fast forward three years and the trip was completely different from the last one!  Michael had to actually convince me to take a cab a few times!  I was walking everywhere!  We didn’t have to look for elevators and could go anywhere we wanted.  We had amazing 5th row, center seats for The Blueman Group.  We went to the Bodies Exhibit and I actually got to see everything at eye level!  I played Blackjack with the best of them (and yes, I left Vegas ahead).  I felt a new sense of freedom while we were there.  I was no longer limited.  I also got to do something I was unable to do the last time.  We stayed at Paris and I was able to go to the top of the Eiffel Tower.  Last time, I couldn’t go because it was too difficult to navigate the wheelchair in the tight spot at the top! I even got to spend the day at the pool AND go in the water.  It was the same Las Vegas, but in a totally different light.  I saw it at eye-level or looking down, not looking UP at everything and everyone and we had so much fun!

???????????????????????????????

Do not get me wrong, Vacations can still be difficult and I still get frustrated with my leg sometimes….I even have meltdowns.  As a matter-of-fact, I had one Sunday.  I couldn’t get my leg to lock into place and kept stomping it like a kid having a tantrum.  Michael looked at me and said, “are you ok honey?”  My response was something along the lines of (and imagine this said as one very fast, long, loud word) , “no this stupid leg won’t go on I am going to fall on my face I hate it and I don’t want to spend the rest of my freaking life living like this don’t smirk at me you don’t know what this is like it sucks it sucks so much and I hate it and it’s not fair and I just want my leg back”!!!!!!  Michael (very wisely) said nothing.  Ten minutes later I apologized and said, “I’m better now” and went about my day.

I recently have heard about experiences many of you are going through, that four-limbers cannot even fathom!  These trials we go through as amputees may not always seem fair and they try on our patience and our strength, but we are warriors.  We have been through worse and made our way through.  Stay strong my friends and know you are not alone.  There is a community of us behind you.  The frustration will never fully go away.  We will all continue to have our melt-down moments, but if you are a new amputee, I can guarantee, those moments will get fewer and shorter.  You too, will be given back a life filled with adventure.  Life is like Vegas; you need to gamble and even lose once or twice, in order to walk away with more than you started with.

As always, thank you for allowing me to be a part of your day!

****By the way April is Limb Loss Awareness month – HUG your favorite amputee!  Also, if you are an amputee, please email your story and some pictures to me if you would like to be included in my blog this year about other amputees! LisaOnALimb@Hotmail.com

Does God Really Give Us Only What We Can Handle?


Oh my goodness!  It has been entirely too long!  I have no excuse except, “life keeps life-ing”.  Actually, I have been, as my mother used to say, “in a mood” for a while.  You know that saying about God only giving you what you can handle?  Well the big guy and I needed to have a little sit down and discuss the difference between what I CAN handle and what I AM WILLING to handle!  I seriously feel like I have had my share of health drama….I am over it….and yet it continues. (Yes, I will be talking about God today).

I have been truly lucky with the amputation, and sometimes, I feel like I have no right to complain. There are people out there that have had it so much worse than me.  The surgery was flawless, I rarely get phantom pain, I walk great, I didn’t have to go through any physical therapy and I am actually happy with the decision to amputate…most of the time.  I have developed a  neuroma on the bottom right side of my residual limb.  According to Merriam-Webster.com, a neuroma is:

1: a tumor or mass growing from a nerve and usually consisting of nerve fibers

2: a mass of nerve tissue in an amputation stump resulting from abnormal regrowth of the stumps of severed nerves—called also amputation neuroma

A neuroma in a below the knee amputee

A neuroma in a below the knee amputee

According to PodiatryToday.com, “The stump neuroma is a natural and expected occurrence after nerve injury. When damaged, the proximal nerve segment attempts to regenerate, leading to a bulb-shaped thickening or stump”.  Basically, during the amputation, the nerves are severed with the leg. They regenerate quickly and can create a cluster of nerve cells that shoot off in multiple directions instead of in a straight line, which can cause mixed signals about sensation, which can cause the stump to be extremely sensitive to any touch, no matter how light.   Every time my prosthesis hits the neuroma just right (which is frequently), pain occurs.  Most of the time, the pain is tolerable, a 5 or so on a scale of 1-10, like the pins and needles feeling when your foot falls asleep.  However, it has gotten so intense that it has actually made me cry.

The nerve does not run straight up and down.  The neuroma is on the side, but the nerve actually runs on an angle and goes behind the knee.  That is usually where the pain is the worst.  It feels like someone is stabbing me behind the leg, where it bends.  I have actually had this happen while I driving on the freeway (three different times).  The pain got so bad that I had to pull off on the shoulder and take my leg off.  I have also had it happen in yoga class and in the grocery store.  In January, I started going to the gym.  I have been limited to what I can do because of this stupid neuroma.  This has defeated the purpose of the amputation, as I am back to worrying if I will be able to do my normal activity without pain.

My Prosthetist, Rich, who is truly amazing, has been working non-stop with me to try to resolve the problem.  We tried shaving out a small indent in the socket, so the neuroma didn’t hit, but that didn’t work.  We decided to start from scratch and make a new socket.  We tried three test sockets (I think).  The first two, the fit was so off, that I didn’t even leave with it.  The third one was fine when I left, but within a few hours, I could barely walk due to the pain.  I ended up removing the test socket myself and using the old one.  Rich went above and beyond and found a brand new liner.  It is a bit thicker and much softer (it was also designed to stay cooler).  We decided to try the liner and recast over that.  Of course the liner is on back-order.  We having been messing with this for over a month, trying to  fix this problem without medical intervention.  Now, I do not know what all of these treatments are (or what some of the words mean) but I am pretty sure that a better fitting socket is much better than:  injection therapy, sterotactic radiosurgery, fractionated sterotactic radiosurgery, radiotheraphy, surgical removal or steroids – oral or injected (which is seriously counterproductive, considering I lost my leg, which lead to the neuroma, from the use of steroids for a medical condition).  THANK YOU to the best Prosthetist ever, for doing everything in your power to help me try to avoid these “cures”!

So, while dealing with this stupid neuroma and already being insanely frustrated, let’s add another medical scare.  I found a lump in my breast and went in for a mammogram.  Of course, because of the location, the mammogram turned up clean.  I was sent in for an ultrasound.  Nothing was found.  I insisted something was there.  The Ultrasound tech got the doctor, who eventually found a mass and scheduled me for a biopsy.  I was a little nervous, but not too much.  There is no history of any type of cancer in my family.  Plus, as one of my good friends said, “you already lost a leg, God is not going to take a boob too.”  Anyway, I went in for the biopsy and because I am a “go big or go home” kind of girl, it had to be something (I the doctor’s expert medical opinion) “weird”.  It turns out, the mass that showed up on the ultrasound is NOT where the lump is and the lump does not show up on the ultrasound.  They biopsied the mass they could find (which came back negative, thank God), but I still have to go see a surgeon about the lump.  I know it is probably going to be nothing to worry about, but seriously, can I have ONE YEAR that I do not have surgery, have to go to a hospital or have a slew of medical tests??

I have done a lot of searching and praying and thinking and throwing tantrums and crying and you know what I have come up with?  I do not believe (my) God “gives me only what I can handle”.  I do not believe God “gives me” anything.  I believe life happens.  People get sick.  They lose jobs, have babies, lose loved ones, get married….all of it.  God helps us get through each situation that life throws at us.  I do not think (my) God is someone who would intentionally make people go through pain.  I believe he helps us get through our struggles.  I believe he puts people in our lives at the exact time we need them.  For example, I recently became friends with one of the mom’s at Lauren’s school.  We instantly clicked.  Guess what?  She was an Oncology Nurse and walked me through everything I would experience with the biopsy and helped me afterward.  I have several friends that came into my life at the perfect moment.  I believe (my) God did that.

I will continue through these new medical issues as I have with all the others.  I will rely on my family and friends to pick me up when I am down.  I will pray.  I will probably have a few (more) melt-downs and I will do it all with as much grace and dignity as I can manage.

I want you all to know how much I appreciate all of my readers….the ones who have been with me from day one and the ones who are just joining me on my journey.  Thank you for allowing me to be part of your day!

A Year in Review


I have spent a lot of time the last few weeks thinking about the past year.  Yesterday, I sat and read the blogs from this past year and all I can say is WOW, what a ride!  I decided today is a good day to catch my new readers up and for those who have been with me from the beginning, here are some highlights of what we have shared.

I started off 2013 with my commitment to diet and exercise (“Weighing in the New Year” – 1/12/13).  I did a great job and lost a total of 30 pounds. My fear of exercise is gone. Unfortunately, I slacked and gained ten back, so I am starting 2014 with the same goal.   January 14th, I shared one of your favorite (and one of my most humiliating) moments of the year.  I got my prosthetic foot stuck in a rubber boot I was trying on.  It took two salespeople a half an hour or so to remove the boot by sitting on the floor and playing tug of war.  (“Ahh, Humiliating at its Finest” – 1/14/13).  I thought I would never be able to show my face in the store again.  I still shop there on a regular basis.

In February, I talked about my phantom pain. I explained to all of you the different types of phantom pain.  There is actually phantom pain and phantom sensation and many different levels of pain.  (Not all Phantoms are the Same” – 2/27/13).

In March, I told you all how much social media has helped me and other amputees deal with our situation (“The Support of Social Media” – 3/8/13).  I also had a monumental moment.  Lauren’s big concern when I told her about the amputation was, “will you be able to play soccer with me”.  I actually had the chance to hang out in the yard and chase the ball around – albeit I ran like a deranged penguin! (“She Shoots – She Scores” – 3/18/13).  After realizing how many people don’t truly understand prosthetic limbs, I broke down all of the components of my prosthesis. I included pictures and explained how it works. (“Taking on the Limb One Step at a Time” – 3/27/13).  After year of wanting to try it, I took my first yoga class and fell in love! (“Yoga for the Mind, Body and Soul” – 3/29/13).

In April, I encountered the old woman in the grocery store who (after gawking at me) said, “what a shame something like that had to happen to such a pretty girl”.  I responded to her with, “I know.  I wish I were ugly”.  This experience began my tirade about being kind to people (“Do Unto Others” 4/14/13).  However the month wasn’t all bad.  I actually had some great moments.  I had children at the school book fair amazed by my leg and ask me extremely insightful questions.  I also had Lauren’s Principal ask me to speak at the school about my limb loss.  I was also asked to do a photo shoot for the yoga studio to use as inspiration for other people who thought they couldn’t do it (“I am on a Very High High” – 4/23/13).  April 27th, I shared photos and stories of amputees who inspire me in honor of Limb Loss Awareness month (“Happy Show your Mettle Day” – 4/27/13).

May was filled with raising amputee awareness and educating “four-limbers”.  This was not my goal, but somehow, it just happened.  I spoke at Lauren’s elementary school to each fifth grade class.  I explained to them that nothing stands in their way of achieving their goals except for them! They had wonderful questions and I truly believe they walked away learning something (“Children are our Future” – 5/3/13).  I was struggling with whether or not to continue my blog.  I felt like I really wasn’t making a difference, and then “Jane” emailed me.  She was struggling with possible limb loss and asked a bunch of questions. I felt that I helped he she helped restore my faith in my writing. I shared our interaction with all of you (“Making a Difference” – 5/16/13).  I went to Cortiva massage school for a free massage during their unit on treating patients with disabilities.  It was such a wonderful massage, I had to share the experience with you.  Because of my blog, they asked me to be a speaker in the classes.  I have done it three times so far and it has been an amazing experience (“Win for Me – Win for Them” – 5/21/13).  On Memorial Day, I went off on another rant.  I was frustrated with people who didn’t remember what the day actually was and were just excited for the three-day weekend (“In Remembrance” – 5/27/13).  I also opened up and shared  with you about the continued pain I have and the immense fear of another amputation.  I encouraged everyone to stop being a secret (“Is the Mind Playing Tricks?” – 5/30/13).

The beginning of June brought some miracles.  After six weeks missing, our dog returned home after a series of “coincidences”.  I had a friend who is a dental hygienist, refer a man to me.  He was contemplating amputation.  What made this situation odd was he had never seen her, or been to that dentist office before, yet he sat in my friends chair that day. hygienist, she took my card to give to a friend who was struggling with many of the same health issues I was (“Miracle, Fate or Coincidence?” – 6/4/13).  In the middle of the month, once again, I had a rant and was fairly certain it would cause me to lose some readers.  It turned out there was a great deal of support for what I had to say about the Boston bombing victims (“What About the Unknown Heros?” – 6/11/13).  I also encountered some Boy Scouts at the Farmer’s Market who actually had me sitting on the concrete showing them my prosthesis (“Educating Four-Limbers at the Farmer’s Market” – 6/15/13).  Lauren and I had to have a long chat about beauty being much more than what you look like.  She watched the movie Soul Surfer and A Dolphin Tale and began her amputee advocate stage (“The Outside is No Match for the Inside” – 6/26/13).

On the Fourth of July, I discovered how much things have changed by tackling a hill I had struggled with before and being out in the water for the first time alone.  I also hit my 27 pound mark (“A New Kind of Independence Day” – 7/7/13).  At the end of the month, I had the honor and privilege of helping to raise money for a school in Africa (“I was Not an Amputee – I was Just Me” – 7/31/13).

August was busy and I skipped right over it, but I made up for it my starting September by sharing some of my best amputee bloopers.  It made a lot of you write to me! (Bloopers, Giggles and “What was I Thinking?” – 9/3/13).  By request, I ran my post from 9/11/12 again.  It was my most read blog to date (“God Bless the USA” – 9/11/13).

In October, I went to Chicago for my 25th high school reunion.  I also got together with many friends from elementary school – some whom I haven’t seen in 30 years.  This was the first time I saw anyone I went to school with since my amputation.  The reaction was wonderful, but it was nice to know many of them already knew thanks to social media (Reunion – part 1 – 10/4/13 and Reunion – part 2 – 10/7/13).  I also shared a not so proud moment, when I threw a temper tantrum due to prosthesis issues, while on vacation in St Croix (Meltdown in Paradise – 10/15/13).

November produced only one posting, but it was a big one.  I celebrated (and yes, it was a celebration) my 2-year ampuversary.  I looked back on how far I have come.  Also, while dressed as a corpse at a Halloween party, I witnessed my beautiful daughter get engaged.  November also brought sadness as a dear friend, devoted reader and an amputee featured in my “Happy Show Your Mettle Day” blog, lost his wife and his son within weeks of one another.  I am happy to report that while he struggles, our friend Peter is doing well (“Happy Ampuversary – 11/15/13).

December made me truly realize how much has changed since Santa brought me a new leg.  I told you all about how depressed I was during previous holidays and how much I am able to do now (‘Tis the Season – 12/4/13).  My final blog of the year was as controversial as I expected.  I applied for my concealed pistol license.  I decided to get it to help protect myself.  I realized that I literally could not run if my life depended on it and refused to allow myself to be a victim.  I received numerous emails on both sides.  Most female amputees agreed with me.  Several people expressed their concern over my decision, but seemed more at ease once I explained that we have guns in our home, I am familiar with them and a lot of thought went into my decision.  Men, well-being the simple creatures they are, most just thought it was “pretty hot” (“Victim? Not Me” – 12/129/13).

Last night, I realized something else.  2013 was the first year in many that I did not have surgery or spend any time in the hospital.  While to most people this may not seem like a big deal, for a woman who has had 20 surgeries and numerous bouts of asthma requiring hospitalization, this was pretty close to a miracle.

2013 was an amazing ride.  I am so excited to see what 2014 has in store for me and I cannot wait to share all my adventures, learning experiences, bloopers and ups and downs with all of you.  I am truly humbled by the thought that so many of you have been with me for two years and more and more people have joined in.  I thank you from the bottom of my heart for standing by me, referring other readers and offering questions comments and even the occasional criticism.  Without you, there would be no “Lisa on a Limb”.   I hope you all had a good 2013 and an even better 2014.  Happy New Year my friends!  And as always, thank you for allowing me to be a part of your day!

Victim? Not Me!


NOTE:  Today’s blog is not meant as a political debate or a place to post your personal feelings on the validity of constitutional rights.  This is written by me, expressing my personal feelings and opinions and does not claim to speak for the amputee population, the female population or any other population as a whole.  If you wish to challenge what I have to say, please read what I write IN ITS ENTIRETY first.

After about a year of contemplation, I just returned home from getting finger-printed and turning in the application for my first CPL.  For those who are not aware, CPL stands for concealed pistol permit.  Yes.  I just applied for the right to carry a gun (insert gasps, tsks and/or applauses here). I have always believed in the right to bear arms, but never in a million years thought I would be someone who would own or carry guns.  My, how things change. In  school, I was athletic.  I was a gymnast and on the track team.  I was strong and fast.  I was also a bit of a “scrapper” and could defend myself with the best of them (shocker, right?) I was also young and invincible. The thought of carrying a weapon never crossed my mind.  Even as I got older and slower,  gun ownership was nothing but a fleeting thought.  So, what changed my mind?  A deranged penguin…..a deranged penguin changed my mind.

People ask me all the time if I can run with my prosthesis. It is not a running leg and was not meant for the impact of running, so  I always say, “not really….I kind of look like a deranged penguin when I try – a fast, awkward waddle” and then I laugh.  Recently, I started to really think about it.  I am a 45-year-old, below the knee amputee with a degenerative bone condition in both legs AND deathly severe asthma…..I literally could not run if my life depended on it.  That is NOT ok with me.

Unfortunately, our world is changing.  Criminals are getting bolder and life is getting more dangerous.  I am a very trusting person and believe in giving people the benefit of the doubt, but that doesn’t mean I am naïve. I am a little, female, amputee who drives a vehicle that is frequently targeted in parking lots.  If I am walking to my car, especially if I am in shorts, I am a prime candidate to victimize.  However, if someone chooses to attack me, I will not sit by and idly take it.  I will fight back and change that attackers mind as to what “easy prey” is.

I can hear all the chatter at the computers around the globe right now, people shouting their opinions, as if I can hear them.  To be quite frank, your opinion on whether or not I carry a gun to protect myself does not concern me. What concerns me is being here for my daughter’s wedding…..my son’s college graduation….Lauren’s high school graduation….my first grandchild and the list goes on.  I have chosen to protect myself in a way that suits me.  That is gun ownership and a concealed weapon and the proper training that accompany it.  If you do not agree with my choice, that is your right and I respect that, so please respect mine.

As you have all come to know, I am not a victim and never will be.   I have chosen to protect myself in ways that suit me. I am able to defend myself against verbal and mental attacks just fine. As a matter-of-fact, I just did so today. I will never be a victim in those arenas, but when it comes to a physical victim, I was vulnerable and that was not ok to me, so I did something about it. If you do not agree with my choice, that is your right and I respect that, so please respect mine.  Please think about how you will protect yourself  and seriously look at your life.  Don’t ever allow yourself to be a victim….in any way, shape or form!

As always, thank you for allowing me to be a part of your day.