No! No! Neuroma!


Previously, I talked about having a neuroma.  It used to be a little irritating, but it really didn’t affect my lifestyle much.  Things have changed enough that I want to share the situation with other amputees and those that love us.  Let’s start with the basics.  What exactly is a neuroma?

The Amputee Coalition of America defines it as: “A neuroma is a collection, or bundle, of nerve endings that forms under the skin of your residual limb. Think of it like a tangle of hair. It can become very sensitive, especially if the tangle is pressing against your prosthesis”.

The Association of Children’s Prosthetic-Orthotic Clinics (ACPOC) gives this definition: An “amputation neuroma” is a nonneoplastic tumor occurring at the central end of a cut nerve as the nerve fibers or axons grow from the open proximal end and become incorporated in fibroblastic tissue derived from supporting elements of the nerve or from adjacent traumatized muscle or fascia. This proximal neuroma begins immediately after the laceration and requires several weeks or months before becoming a mature, circumscribed, nonproliferating mass. The neuroma may become firmly attached to surrounding soft tissue or bone, resulting in a traction stimulus each time this segment of the extremity is moved. Traction, percussion, or emotional stimuli cause a painful, unpleasant sensation. When the neuroma is stimulated, paresthesias, usually described as “pins and needles,” occur along the course of the normal dermatome or myotome, in addition to pain produced directly at the point of pressure.

Massachusetts General Hospital uses this description:  “A neuroma is a disorganized growth of nerve cells at the site of a nerve injury. A neuroma occurs after a nerve is partially or completely disrupted by an injury — either due to a cut, a crush, or an excessive stretch. The neuroma is a ball-shaped mass at the site of the injury, which can be painful or cause a tingling sensation if tapped or if pressure is applied. Although not always the case, a neuroma can be extremely painful and can cause significant loss of function for the patient by limiting motion and contact with the affected area.  Neuromas can occur after trauma and even after surgery in any region in the body since most areas have nerve fibers providing feeling. Painful neuromas are common after amputations in the hand and upper extremity (arm) and in the lower extremity (leg)”.

I explain it in a simple and less wordy way. It is a big ball of tightly intertwined nerves.  Mine is protruding from the bottom right side of my residual limb.  When it is touched or pressed on, the sensation can be extremely painful.  Even in a resting position, my “foot” (the bottom of my residual limb actually feels like my foot) constantly feels like it is asleep.  I have constant pins and needles, although most of the time it is tolerable.

This is my limb.  You can see there is a prominent bulge on the right side.  That is the neuroma.

 

Right side with the neuroma

Right side with the neuroma

Left side - smooth with no neuroma

Left side – smooth with no neuroma

WARNING: THE NEXT PICTURE IS A GRAPHIC PHOTO OF WHAT AN ACTUAL NEUROMA LOOKS LIKE UNDER THE SKIN. 

neuroma

In this picture, the nerve looks like a Q-Tip. The end “ball” is the neuroma.

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In this photo, the rectangular shape at the end is the neuroma.

The thing with my neuroma is I had no idea what it was in the beginning.  No one warned me that “Neuromas are found in more than 90% of lower extremity amputations, of which 30-50% are pain-generating for the patient” (according to the U.S. National Institutes of Health – Clinical Trials). It is important to note that according to ACPOC:  “Not every amputation neuroma is painful. Postoperative percussion of an amputated nerve end causes local pain and exaggerates painful phantom in the anatomic zone of the nerve. Gradually, the neuroma becomes more tolerable, provided that excessive stimulation from persistent traction or pressure does not occur”  When I first started feeling the tingling in my “foot”, the doctor told me it was a normal feeling and nothing to worry about.  So, for 3 1/2 years, I was under the impression that all amputees walked around with tingling or pins and needles in their residual limb. Finally, after several visits to see my Prosthetist (Rich Wall – Hanger Clinic in Bellevue, WA) because I was having problems with my socket fitting comfortably, Rich suggested it may be a neuroma.This was over a year ago.

Now, you would think it would be easy to go see a doctor and have it diagnosed and taken care of, right?  Not even close!  Apparently, not many doctors are willing to take on a patient that has the bone issues I do and even fewer are willing to take on an amputee with bone issues.  I am not willing to bounce around from doctor to doctor.  I wanted to find a new doctor to replace my surgeon who retired (he did every one of my surgeries, including the amputation from 2001 – 2011).  I know I will need knee replacement and probably several other surgeries and I want a doctor who will be with me through them all.  With Rich’s help, I found a doctor who would see me.  My appointment was last week and I got good news and bad news.  The good news was he was willing to take me on as a patient….the bad news was he was willing to take me on for everything EXCEPT the amputation site and the neuroma.  Then, he gave me more good news.  He would refer me to a local doctor who was very well-known and specialized in amputations.  Then, more bad news.  He is so highly regarded that the first appointment I was able to get with him is December 1st.  That is 4 1/2 months away!

After researching the subject to see if there was anything I could do while I wait, I was surprised to see how many ways there are to treat a neuroma!  There are three routes you can take:  Non-medicine, medicine and surgery.

Non-medication options include (according to the Amputee Coalition of America):

  • Ultrasound, which is essentially a machine that uses sound waves to generate heat within a body part; it can help increase blood flow so that inflammation and swelling can be decreased
  • Massage, which also helps decrease inflammation and helps desensitize your residual limb to touch
  • Vibration, which creates a mild shaking to contract muscles, to decrease inflammation and pain
  • Percussion/finger tapping at the point of pain, which also helps desensitize your residual limb
  • Acupuncture, manipulating thin, solid needles that have been inserted into specific acupuncture points in the skin
  • TENS (transcutaneous electrical nerve stimulation), which produces a mild “pins and needles” sensation, overriding some of the pain that your body is producing.

Modifying the prosthesis socket to prevent rubbing at the sensitive part of your limb may also be helpful.

I have not tried ultrasound, TENS or acupuncture. Massage, vibration and finger tapping takes the edge off and makes it a little more bearable for me.  Unfortunately, the relief stops when the rubbing or tapping stop, so unless I plan on spending the rest of my life in a chair rubbing my leg, these are not viable options.  Rich has modified the socket for me by putting an indent onside the socket to prevent rubbing.

This is a look into my socket from above.

This is a look into my socket from above. You can see what looks like black scuff marks on the left side (as you look at the photo). That is where he made an indentation for the neuroma to sit.

A close up view of the indentation.

A close up view of the indentation.

Because neuromas are made up of nerve endings, possible treatments include medications that help with nerve pain, such as:

  • Non-steroidal anti-inflammatory medications
  • Specific antidepressants and anticonvulsants that have been found to be effective for nerve pain
  • Steroid injections.

I have tried several medications, including over the counter anti-inflammatory medications; Gabapentin (Neurontin) which is a medication used to treat certain types of nerve pain and multiple pain medications. I discovered that using an Icy Hot roll-on and covering the neuroma area helps to dull the pain to the point of being tolerable.  I recently found a “recipe” for blend of essential oils that do the same thing that Icy Hot does, but works a little better.

The final option is surgery, which we believe is what I will need do to the size, location and severity.

This picture shows the most sensitive and most tolerant areas.  Of course, I am in the sensitive area.

This picture shows the most sensitive and most tolerant areas. Of course, I am in the sensitive area.

The surgical procedure seems fairly simple and straight-forward. According to Massachusetts General Hospital, “The neuroma is then excised, and the nerve is placed in an area in the deeper tissues where it will not receive frequent direct stimulation (from pressure or contact) during normal activities. Often, medications are used in conjunction with surgical treatment to modulate the body’s response to the neuroma pain. This often enhances the effects of surgery”.  ACPOC states: “Complete revision of the amputation stump can be avoided if the nerves are not adherent to bone or do not show excessive involvement in the terminal scar. Mobilization of the flaps can be avoided by isolating the nerves about 3 inches proximal to the end of the stump and resecting a 1 cm segment from each nerve.This technique has been successful in eliminating the painful neuromata in both below-elbow and below-knee amputation stumps”.

Unfortunately, since I cannot even get an appointment until December, I most likely will not receive any treatment until after the first of the year. That means months of discomfort and even pain.  I would love to blame the doctor that told me it was normal……or the doctors who refused to take me on as a patient….or the medications that didn’t work, but the bottom line is I can only blame myself.  I knew there was something wrong, but I didn’t pursue it or get a second opinion until it was really too late.  If you only take one thing away from today’s blog, let it be LISTEN TO YOUR BODY!  I have said it over and over and yet, I second guessed myself. I am not just saying this to amputees.  Everyone needs to be become their own best advocate! No one knows your body better than you do.  If you are not comfortable with what a doctor tells you, do not be afraid to get a second opinion.  I can’t help but wonder how much pain and trouble I could have saved myself if I had gotten one.

If you are an amputee and have lots of discomfort around your socket, have tingling or pins and needle feelings or anything that just doesn’t feel right.  Talk to your doctor and prosthetist ASAP!

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

Discrimination: Victim or Violator?


How long has it been since I have written something controversial?  Well, good news folks…..today is the day.  I am sure that many of you will agree with me and others with vehemently disagree.  I hope at the very least, it makes you all think.

The race riots over Michael Brown, Trayvon Martin and Freddie Gray, the debate over gay marriage, even the controversy over whether or not women should be allowed in the military or the White House, have seriously got me thinking.  I am not talking about black vs. white, gay vs. straight or anything like that.  What it made me think about is bias, prejudice and human rights.  It seems that everyone is going to have someone who is prejudice against them.  Even white, upper class, Christian men have people who dislike them for who they are or what they stand for.  This is America.  We are the land of opportunity, free speech and free choice.  We are a melting pot of race, religion and beliefs.  I must say I get rather irritated when I hear people screaming that their rights are being violated and they are being discriminated against, yet they do the same thing to people who have different beliefs than they do.

Why am I talking about this on a blog dedicated to learning to live and laugh as an amputee?  WE are true victims of discrimination but we are no out protesting, looting, screaming at the police, shooting people or any other nonsense.  We are educating and moving on.  Do you doubt what I am saying?  Do you think that African-Americans, homosexuals, women, etc…. are discriminated much more than amputees and people with other disabilities?  Let’s take a look, shall we? (From here on out “you” will be used as a general term describing anyone feeling like their rights are violated and “we” will refer to amputees and other people with “disabilities”).

When was the last time you were forced to stay outside of a store?  I can tell you that it is fairly common for the wheelchair and even crutch bound folks.  Have you ever been to the preteen store Claires?  That place is a maze of Hello Kitty, One Direction and Neon treasures.  It is horrible to have to sit outside because the displays are so close together that a wheel chair just does not fit.

There are an alarming 185,000 amputations done per year in the United States, with 2 million people dealing with some form of limb loss.  However, we are allowed ONE bathroom stall in a public restroom…two if it is a larger facility. Many people with disabilities need those stalls and I am not just talking about people who are wheelchair bound.  Imagine for a minute that you are missing one or both of your legs and have titanium and carbon fiber in their place. Now imagine trying to sit on a toilet without having handrails to hold on to.  NOW, picture doing it with knees that actually have to be plugged in at night because you don’t have flesh and bone from the thigh down.  Can you even imagine how humiliating it would be to fall trying to sit on a toilet? Yet how many people go into a public restroom and think that is just an extra roomy stall?  Even if that stall is available, do you know how many are not actually big enough  to actually fit a wheelchair into it.  When was the last time you were unable to use a rest room because of your color, religion, sex or sexual preference? Is their another group of people who are denied the very basic human need to use a restroom with dignity?  I don’t think so.

Would you ever walk up to a person in the grocery store and ask what their reason was for wearing a sari, turban or yamaka?  Can you imagine walking up to an African-American male and asking “why is your skin so much darker than your wife’s?”  What about approaching a homosexual couple and saying, “I have a friend who has a gay cousin named John Smith.  Do you know him?” Yet, nearly everyday, I get approached by complete strangers asking me what happened to me, asking if a know other random amputees and commenting on the outer appearance of my prosthesis.  I even get asked if it interferes with my sex life!  Yes, I am open and discuss my “disability” with people, but it doesn’t mean I am ok with the complacency and unfair treatment to “my people”.

Have you ever gone into a movie theater and been told you could sit in only one of 4 seats and then have people who are not in your “minority” sitting in those seats when there are plenty of perfectly good seats for them to use?  Have you ever been to a restaurant and been told the only tables available were in an area that would not accommodate you, so you would have to wait, while people who came in after you were seated first, simply because they were not in your “minority”?  Can you imagine telling someone they couldn’t park somewhere because they didn’t look white, or straight or Christian etc.?  Do you know how often we get told, even yelled at by people who say we are not allowed to park somewhere because we “don’t look handicapped”?

I have personally dealt with these violations of my human rights. Since 2011, I have not been able to go through security at the airport without a full body pat down. How about you?  I was in Las Vegas and had to hop on one leg to get into a stall because my chair wouldn’t go into it. Not too long ago, I was in an older establishment that had one restroom.  It was at the top of a very steep staircase.  No ramp or elevator were available.  Today, I was asked if I was legally allowed to drive (as I was getting into my car) because of my leg.  I have been pointed at, stared at, laughed at and asked extremely inappropriate questions.  I even had teenage boys scream at me “Go home you one-legged freak

According to the US Census Bureau, there were 318,857,056 in the U.S. at the time of the last census.  50.8% were women, making 49.2% men.  Wouldn’t that make MEN the minority?  The race breakdown was as follows:  White (61.6%), Hispanic/Latino (16.1%), African-American (13.2%), Native American (1.2%), Asian (5.3%) Pacific Islander (.2%) 2 or more races (2.4%).  According to these numbers, shouldn’t the Native Americans and Pacific Islanders be the ones protesting, rioting and looting.  9 Million people in the United States identify as being part of the LGBT community.  Only 2 million people in the United States deal with limb loss.  We truly are a “minority”.  We get treated differently and with more bias than just about any other group in the United States and no one seems to notice or care.

My point here is to make people aware.  We all suffer a disability.  We are all a minority.  We have all dealt with some sort of bias or prejudice in our life. We have all felt like our right were violated at one time or another , but most of us don’t blame other people, riot, loot or raise havoc.  We teach, learn and move on.  Please don’t judge, assume or disregard other people’s needs. I beg of you, before you scream racism or prejudice, think about those who are treated even more unfairly than you are claiming to be.  Are you a victim, a violator or a little of both??  If you are or have been a violator, then you are being hypocritical when you preach equality. Be the solution to the problem, not the cause. In the words of Gandhi, “be the changes you wish to see in the world”.

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

Working it at the Workshop


Limb Loss Awareness month may be ending, but that doesn’t mean we all disappear or can now go unnoticed and unrecognized.  Amputees will continue to achieve and surpass personal goals.  Many will continue to amaze and inspire the rest of us.  Jeffrey Cooke is one of those people.  You have heard me talk about him a lot.  He is epitome of strength, courage and perseverance.  He was a man who seemingly had it all, lost it, fell into a pit of despair and gave up.  Then, like a Phoenix rising from the ashes, he came back with a vengeance.

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His story is tragic.  After being beaten and left for dead on a railroad track, he was hit and lost his legs (read his whole story posted last April – “Jeff’s Story”).  He gave up on everything and refused to try to walk.  He thought his life was over, but now, he is public speaking, mentoring and learning how to exceed his own expectations.  Jeff recently returned from a Bilateral Amputee workshop in Oklahoma.  He has graciously shared his experience.

My experience at the Bilateral Above Knee workshop is beyond words for me to explain.   I got to hear so much information, then watch it in action and taught to do it ourselves. The experience was so enlightening and it was empowering knowing we can do it!  We watched  guys on legs with microprocessor knees walking around with ease.  After witnessing it, we watched a film of them struggling in the beginning.  Seeing where they are now compared to where they were gives me so much hope. I saw first hand that if we just put in the work we can get there too.

We also learned about nutrition, meds, the importance of stretching each day and different mechanical components to the legs. We learned how to do a controlled fall and to try to do a rolled fall whenever possible….something the average person doesn’t give a second thought to.  We also practiced walking up and down steps and ramps and even escalators! These are things we will definitely encounter while we are out and about.  I think one of the most important things I learned was how to desensitize my residual limbs and why it is so important. I

I was able to meet other bilateral amputees who were facing the same struggles I am.  I learned so much more than I could ever share!  You all should have been there! A giant big thank you to everyone that was there!

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Thank you so much to Jeff for sharing his story.  We may not have met in person yet, but I am truly blessed to call him my friend.  If you have questions for Jeff, please contact me and I will see that you connect with him.

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

Reflection


It is Limb Loss Awareness Month, which always causes some reflection on my part.  This year it is no different. In September of 2011, I made the decision that would forever change the course of my life.  I decided to stop doing the same thing over and over again (surgery) expecting different results (no pain) and instead, have a below the knee amputation.  There have been many ups and downs over the years.  Of course in the beginning, there was some regret, doubt, tears and tantrums, but I can honestly say that I now am extremely happy with my decision. I was given back a life that was taken from me.  I am able to do things I never in a million years thought I would ever do again.  I also have had the opportunity to share my story with other amputees and if I am really lucky, make a difference in some of their lives.  However, I don’t think I will ever be able to get as much as I have been given.

I have had met some of the most incredible and inspirational people and I would have never had the honor of making their acquaintance if it were not for amputation and this blog.  Although I have only met a few of them face-to-face, I can honestly call them my friends.  We have our own little “secret club” and are always there to support one another when it seems no one else understands.  If you have been a reader of mine for a while, you have probably read their stories.  If you haven’t I highly suggest you go into the archives and pull up stories from past Limb Loss Awareness Months (April) and meet them.  Their stories will move and inspire you.

Sometimes, I don’t even feel worthy of being in the same group as these incredible people.  The obstacles they faced are insane and yet they have not only survived, but thrived.  Take Jeff for example.  This man was coming out of a bar…something we have all done without a second thought.  He was jumped, stabbed, robbed, beaten and left  for dead on a railroad track.  He was hit by a train and lost both of his legs above the knee.  He fell into a bout of depression, refused to learn to walk and began drinking heavily, causing him to lose  everything….his wife, his daughter, his home, his sanity. He finally decided to get sober and take his life back.  He now attends conventions, does public speaking about alcoholism and about being an amputee, he drives, works out, does peer support, raises his daughter and maintains his sobriety.  This man amazes me!

Then there is Peter.  When he first contacted me on this blog, I had him pictured looking like an accountant.  As our emails continued, I felt comfortable enough with him to become friends on my private Facebook page.  Imagine my surprise when I saw he looked like he just rode in with the Hell’s Angels!  I was actually a bit scared of him, which I find hysterical now.  He is a shining example of strength and perseverance.  Peter had his above the knee amputation in July of 2012 after 25 YEARS of surgeries and pain following a heli-skiing accident.  Peter focuses on the good that came out of the accident and that was he had a wonderful nurse in the hospital, whom he later married.  Peter was strong and positive right out of the gate after his surgery.  He had the world at his fingers and then everything crashed down around him.  A year and a half later, on October 15, 2013 he unexpectedly lost his son.  Exactly one month later, on November 14, 2013, his beloved wife passed away from a broken heart.  Most people would not have the desire or the strength to continue and would fall into a deep, dark depression.  Peter is NOT most people.  The man thrives.  He is charming and funny.  He is supportive to the rest of our group whenever one of us needs it.  He has his bad days, but he does what his Donna would want him to do.  He lives life to the fullest.  He is an incredible man and an inspiration to so many.

Lindsey and I hit it off immediately.  It is probably a good thing she lives in the UK because something tells me the two of us could get in way too much trouble together.  She is sassy and sarcastic and I adore her. Lindsey and I first met on Pinterest of all places.  We both were pinning the same amputee humor and struck up a conversation.  In April of 2012, after 4 years of IV antibiotics for a bone infection, she had a below the knee amputation.  Just as she was learning to deal with that, in August 2012, she had the other leg amputated below the knee.  It has been amazing watching Lindsey’s confidence grow.  When we first met, she had cosemeses (“flesh” covering) on both legs and did not wear skirts.  After about a year, she decided to remove the coverings and has been rocking her metal ever since!  You can see the confidence increase as you look at her photos.

Bill suffered years of debilitating pain and three failed knee replacements before becoming an above the knee amputee in October of 2010.  If you get him talking, you won’t hear much about his leg, but you will hear a lot about his two loves….scooters and his wife.

I think that all of us can agree that although our struggles have been huge and we have suffered a great deal, we are all inspired and moved by Trevor.  This man has been on a rollercoaster ride for years and it just doesn’t want to stop and let him off!  In April of 2006, while on a family trip, he fell 90 feet down an abandoned mine shaft.  After 10 1/2 hours, he was rescued with dozens of broken bones and left the hospital 4 months later as a paraplegic.  Fast forward 15 months later he was back to work, but this was short-lived.  He has been in and out of surgeries, finally losing his leg below the knee.  He got on with life, only to have a revision and lose it above the knee.  I hear his trials and tribulations daily and am amazed that he constantly lives in the moment and maintains the most incredibly positive attitude I have ever seen.  His incredible wife Robin has never left his side and his THIRTEEN children consider him their hero….so do I.  Apparently, many other people do as well.  Trevor will be featured in an episode of “The Day I Almost Died” on the Discovery channel in July.

I feel so blessed to be allowed into this group of true heroes.  They have given me strength and hope.  They have shown me how to go through hell with grace and dignity and come out on the other side as a much stronger person.  I am also blessed to have such an incredible and loyal group of readers.  The encouragement you have given me when I thought about giving up will not be forgotten.  Thank you all for sharing your experiences, fears and hopes with me.  Thank you for continuing to stay with me over all these years.  I want you all to know that although I do not have the chance to respond to each email and comment I receive, I read every one of them and am touched beyond words.  I will try to continue to make you and other amputees proud…on blog at a time.

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

Speechless


Hi everyone.  It has been a long time.   I received tons of emails asking about me, my family and where I have been. Life has been hectic.  My daughter got married in October, then there were the holidays, then my dad got sick and had open heart surgery.  Life seemed like an insane rollercoaster ride for a while, but that really has never stopped me from writing before.  The truth  is, I lost my motivation and needed a break….a serious break.  For every one email I got from person I seemed to touch, I got a hundred from devotees wanting me to “describe your stump” or from companies wanting to “help increase your internet exposure for only $39.99 a month.  I just got a little fed up and needed some time to reevaluate.  Then I received this email and everything changed.  It left me speechless and changed my whole thinking process. So here I am.  I thank you all for being patient and understanding.  I love my readers and friends so much.  You have touched my lives more than you will ever know.  And thank you to Angie for making me really see what it is all about.

Lisa,

 I know you were struggling over whether or not you should keep writing because you weren’t sure that you made any difference. I want you to know the difference you made to me and my family and encourage you to keep writing. On April 15, 2013 I lost my leg due to infection issues from a car accident, caused by a drunk driver. I was so angry and confused. What made things worse is it was the same day as the Boston Marathon bombing. As I healed and my family struggled with my medical bills and making adjustment to their lives to suit my needs, I read about all of the amazing experiences these people had. They paid for nothing and made their recoveries sound so easy. I hated them. I hated everyone. Nothing was easy. My prosthetic didn’t fit and was so uncomfortable and walking seemed impossible. I hated being a burden and I hated that my life felt over. I decided it was best to take my own life. I prayed to God that if I was supposed to stay, he needed to send me a sign. That same day my mother came across your blog post about the Boston Bombing victims called What About the Unknown Heroes and sent it to me. You were the first person who said outloud what I was thinking, that it wasn’t fair that they got money and attention and all the help they needed and me and other people suffered and struggled alone and in silence. I continued to read your other posts and saw everything you have been able to do. I decided that day to stop feeling sorry for myself and to start fighting for a new and improved life.

 You have not written for months and it is important to me that you know that you need to continue. I don’t mean to sound rude, but you owe it to us to keep doing it. I understand there are nasty people, but you help people. Please don’t stop doing the work you are doing. You don’t know how many lives you are changing or in my case, saving. I expect to see more blogs coming soon! 

Angie

This email truly left me speechless, which is a hard thing to do.  So here I am, humbled beyond words, hoping you will have me back.  And as always, thank you for allowing me to be part of your day.

You Spoke…I Listened


Yes, once again it has been a while. Life just keeps happening even though I would like it to slow down! I took my son off to Boston to college. My 8-year-old started third grade and my oldest daughter is getting married in 25 days! Thank goodness I know how to multi-task.

So, I have had so much positive feedback since my last blog. You spoke…I listened. I have decided to continue writing and forget all about the nasty comments. In reading all of your amazing comments, I realized that I am truly making a difference. I am sincerely grateful to all of you who have supported me through this journey. I originally started this as a way to keep my friends and relatives updated, without having to repeat the story again and again. I had no idea that in a three-year period, I would go from several of my close friends reading this to an average of 144 readers a days…in 42 countries! THANK YOU!

We are told that positive reinforcement is important when raising children. Well I am here to tell you it works for adults as well! Some of the amazing things you have told me over the last few weeks will definitely keep me going! Here are some of the comments I received. I am not posting these to boast, but to share my excitement about the lives I have touched and to continue to bring you along on my journey. After all, YOU are the reason I do this.

Anne says: Hi Lisa – I’ve been reading your blog for the past couple of years, since my daughter (in her early 20s) had an accident which left her with one amputation and the other leg that was (and still is) severely compromised. My way of coping with this was to learn as much as I could to help my daughter, to try to understand what she has to cope with, and your blog has been a great help. I think I know how I would feel if it happened to me, but in truth, I will only REAlly know if I have to go thro it myself. Being so upfront about something that is so personal can’t be easy, and I thank you so much for taking the time and love to try to help amputees to come to terms and non-amputees to understand. Thank you Lisa, please don’t stop, and please ignore those idiots with their pathetic remarks……they only show themselves up. The people that count are your lovely family and friends, don’t let the ignorance of strangers spoil your reaching out to those who appreciate your blog.

Anissa said: Lisa, first of all I have to say, as an amputee, I LOVE your blog and look forward to your posts.
My initial reaction to these emails (probably like most people) was, Whaaaaaat?! But after the initial shock wore off, I had to laugh a little.
In response to the question, “Why do you separate yourself (as a amputee), from non-amputees? You have adopted the general notion that being an amputee means you are less human”.
Um, I hate to state the obvious but you ARE, in fact, an amputee. Writing about it doesn’t mean you are separating yourself, but rather that you are accepting and embracing this part of who you now are.
And, of course (as you well know) you ARE a “normal human being”. However, you are a human being that is also missing a leg (aka, an amputee).
Just as I could never begin to understand what it must be like for someone to be deaf, or blind. A non-amputee could never understand what it’s like to BE an amputee. An amputee will have challenges, emotions, concerns, experiences, (and relationship issues) that a non-amputee will never have, and therefore, never understand.’.
For someone to say they “don’t sympathize you”. I say, Great, thanks!!
I don’t want your sympathy. Sympathy is nothing more than pity. Just because I’m missing a leg, doesn’t mean I’m a helpless, but I still might need help. And if I did need help across the road, (which anyone might) I would gladly take it, and be thankful.
As to the comment, “what makes you less than a fully able criminal?” Um, hopefully nothing makes you less than any kind of criminal!
And lastly, in response to the first email: If a person can’t even articulate a coherent sentence, all you can do with that is laugh, and hit delete. 
Keep at it Lisa! You are leaving a mark on the world that is bigger than you know.

April was kind enough to say this: Lisa, I know I don’t always comment on all of your posts, but I do read them all. And as an amputee, I love reading about your experiences and life. I know it’s easy for me to sit here and say, “Just ignore those assholes!” But really, I truly believe you’re doing good. I wish I would’ve found something like your blog when I got my foot amputated 12.5 years ago. I knew no one who had gone through what I was going through and the support groups in my area were filled with older folks who were losing limbs due to diabetes. Not that their amputations are any different, they just weren’t like me, a young mother with many, many more years to live, you know?

I guess what I’m saying is if you feel you need to shut down the blog, I’d completely understand. But if you’re able to help just one person who is getting ready to lose a limb or has just lost a limb, I think it’s worth a million emails from haters and devotees.

Keep your head up, beautiful! And thank you! You rock!

And from Fraser: Lisa, never doubt that both you and your blog are helping. I lost my lower right leg (careless I know) back in November and, although an infrequent visitor to your blog, I find it amusing and inspiring. Keep it up and ignore the detractors and the ignorant!

Thank you my friends for all of your kindness. Thank you for your questions and your loyalty. I promise you I will keep writing and ignoring the nasty comments, as long as you are willing to read what I have to say. While my words may help some of you, your support will help ME more than you will ever know. Thank you.

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

P.S. Is there anything you would like me to write about?

Addressing the (sometimes not so nice) Comments


I have been struggling lately. I knew when I started this blog that I would be making myself open and available to a lot of people. However, I am starting to wonder if I am only attracting the devotees and critics. Am I really even helping anyone? I have received some comments and emails lately that I would like to address.

First, I have received more than a dozen EXTREMELY NASTY comments about what the reader would like to do to “my stump”. I will not even repeat these comments because they were so vulgar. I will say, I am not interested in what they want to do. I am extremely mortified and disgusted at the inappropriate comments made on a site dedicated to HELPING amputees. Your comments do nothing but solidify the belief that devotees are perverts and really make me want to shut down this blog. I have also been notified that pictures from my blog are floating around on devotee websites. That has made me seriously reconsider including pictures that have honestly helped some of my readers.

Secondly, this morning, I received an email that did not make a ton of sense, but I will address it to the best of my ability (this is copied and pasted, exactly as written):

” seriousoly READING SO MUCH TOO MUCH!!!! Are you going to get to the point or start with WHY YOU ARE AN AMPUTEE AND SURGERIES, OMG!!!!!!!!!!!!! i’m sorry and also happy for you and your life. most wouldnt keep reading if they gook finally read WHAT HAPPENED! cant you start with it, like people are taught in english topics outlines etc.,”

In response to this, the very first day….the very first post, was about what happened. On the right side of every article, in big letters, it says “CLICK THE LINKS BELOW FOR THE WHOLE STORY!” Then there are the following subcategories: “•About Lisa •The Road to Choosing Limb Loss •Life After Limb Loss – the first four months.” I am not sure what point this person was trying to get across, but I answered the question a long time ago and it is right there, for anyone to read, anytime.

Also, recently, I received another email that truly confused me and sent me some mixed messages (full email is listed below). In the beginning, it sounds like this reader appreciated the fact that I was educating non-amputees as well. Then the person asked why I separate myself “as an amputee from non-amputees” and that I “have adopted the general notion that being an amputee means you are less human.” In this blog, I separate myself as an amputee because it is written about LEARNING TO LIVE AND LAUGH AS AN AMPUTEE. I must identify myself as an amputee if I am going to discuss how I am overcoming it. Also, I have never said that being an amputee means you are less human…nor do I think I have ever implied it. In fact, I am fairly certain that I try to show people they can do anything they want to do.
Finally, after a rant I am not quite sure I understand, this person told me to divorce my husband if he does not accept my amputation and I do not need to succumb to a relationship because I NEED one. My husband and my family have been nothing but supportive. My husband thinks I am beautiful and tells me how proud he is of for being so strong. I am not sure where this person got the idea that my husband was an ass, but he could not be more off base if he tried. I would not have managed to get through this without him! I am under the impression that this person was trying to compliment me, but I am just not sure. This is the email:

“Well, I would not have mailed you as a result of the fact that you specifically did not require non-amputees to respond. However, a lot of your expression does educate the non-amputee.

Remember, that there ARE non-amputees (bear with my chosen phrase) out here (across the globe as you see) that either have family, friends, neighbors, and the likes that are amputees. However, in my case… The only amputees I know are the people I have seen randomly, and whom I do not know personally.

So what am I doing emailing you? Here’s a thing… The more “non-amputees” know and understand amputees, the more we will learn to appreciate as well as understand (not necessarily sympathize) with amputees. By this I mean: No surprised staring! No extreme motions of sympathy that makes any amputee feel any less of an able person.

Fair enough, you have been down the roads of alcohol and other substance/s. And you most certainly have more that sufficient reason to be proud of quitting those habits.

My question is: Why do you separate yourself (as a amputee), from non-amputees? You have adopted the general notion that being an amputee means you are less human.

You made a change when you decided to introduce a blog that educates the less educated. You said you decided ‘to make it happen’… You said that you wanted to hear the ‘raw and real truth’…

Well, the raw and real truth is that there are difficulties in relationships when a spouse is fully able and the other is not. And that will Never end. The fact is: the more amputees separate themselves (verbally and even psychologically) from those that are not amputees, then the more they create a division.

You’re a normal human being. Yes, there are those that stare at you, pass negative remarks or gestures. That will always be there. Its not right. Its not fair. And even too much of sympathy on the other hand isn’t… Coz flip it, so what?! So you have one limb! So what?! There’s millions of fully abled people out there that are simply useless, criminals, failures, suicidal, etc. Yet you’re out there creating a zone where people can find answers and comfort. What makes you less than a fully able criminal?

Divorce the man if he’s making you feel less. Don’t accept him like you accept your amputation. You HAD to be amputated. But you don’t HAVE to succumb to a relationship simply because you NEED a relationship. Why should you? Cos you wanna be like everybody else? Did everybody else decide to create a site/blog like you did? NO!!!

I don’t sympathize you! I don’t feel emotional for you!! I will not help you across the road!!! Why should I? You’re way stronger than me and most fully able dicks I know ( excuse the french)!!!

You gave me, a non-amputee, more motivation on your blog, than I ever got from any full able prick I have known my whole life.”

If I am helping anyone, this will all be worth it, but I am just not sure if it is working anymore and it is getting harder and harder to write when I know I will receive 50+ nasty and/or negative comments every time I post a new blog. I love my readers and want to continue….but is it really worth it? Your feedback is greatly appreciated. HOWEVER, if you plan on leaving me sexual comments, move along. If you want to criticize what I have to say, I suggest you delete my bog from your reading materials, as I will not be changing my writing style if I choose to continue with the blog.

Thank you for listening to my rant…and as always, thank you for allowing me to be part of your day.