Before Rehab… I need a new LEG

Rehab started with getting me a NEW leg.  This foot/socket and all the equipment in-between… cost $16,000.

 

I am so thankful to even be able to get into Rehab.  It has changed my outlook on learning to be patient AND why we need to do things the right way.  Every step I took with my PT (Physical Therapist) I would ask “is this right”, “how can I do it better”.  My PT was amazing AND patient with me.
I wanted to run before I could walk.


Besides my original prosthetic leg, I will also need aproximatly 5 to 7 sockets during the first 8 months, due to stump shrinking (fyi: all extra sockets… not included in the original cost of the prosthetic leg).

How does this whole thing work, getting a new leg?  Before rehab I met with my Prosthetist to discuss my needs/wants and with my Dr. to assess what she predicted my body could handle.  I wanted the moon & I made that clear… I wanted to walk barefoot, swim and to be as active as I could be in the first year.  I knew running is not possible for another year, I would have asked for that too.

The Dr. and the Prosthetist put together my quote for my first leg, which was for about $16,000.  We did add the water foot Rush Foot, as getting in the water is a priority this summer.

Once I got my first prosthetic I could start rehab.  Then on my way to learning to run… ok, not for another year.

Next post will be about my Rehabilitation (AWESOME) experience here in Canada.

Healing With DVT… a Blood Clot

Ugh, Healing from my amputation was a walk in the park compared to healing from a blood clot after surgery… On Day 25 after my bk amputation, I won the “by chance lottery” I had a 2% chance of getting a blood clot – and I did.   I got a doozy of a blood clot too.   DVT (Deep Vein Thrombosis) the entire length of my “good” leg and into my groin.

Albeit the DVT is temporary, it has opened my eyes to immortality.  Every day my priority is to, live.  The Doctor said that if anything dangerous was going to happen it will be within the first 2 weeks.  I am writing this on day 14, and I am so excited to be out of the danger zone.

The DVT has slowed the healing down.  I need to be careful with my movements and stress level that I do not break off a part of the blood clot, which… could kill me.  You know… just regular day to day things that someone should slow down for.

So, Slowing Down for me means…

80% of my day I am resigned to laying horizontal in my bed.  So outside of sleeping, I can do small trips from the bed, like walking with my walker.  Every few days I notice I can go a few feet further.  I want to introduce this guy below.

I don’t mention my husband that often on social media.  So here he is, meet Gus.  Gus is always there for me.  I am very lucky to have a soul mate like him.  We are not a perfect couple by all means, but we have a solid relationship (married 28 years now).   I am very thankful to have him with me through this ordeal.  I love him to the moon.
With DVT I am unable to go up or down stairs, so my bed is temporarily in the living room.  Besides my bed, there are a few chairs and a 2 person love seat.  This small love seat is where my husband has been sleeping every night since the diagnosis of the DVT.

My exercise routine is…

  1. This is part of my amputee physio, I have added another 6 movements including sit ups.

   

Life sometimes gives you limitations you need to focus on what you CAN do.  Today I CAN sit in my wheelchair and do the dishes, empty the dishwasher. I CAN go through the mail and toss (recycle) unwanted flyers.  I CAN fold clean clothes from the laundry. I CAN while in my chair, reach and move to keep upper body and heart pumping.  Add all this up and it equals a fabulous day.

I do have down moments or even whole days of being unmotivated but they are getting less and less as I focus on what I CAN do.

Once my DVT gets smaller, I can get back to getting into a prosthetic leg. I see the carrot at the end of the string and I want it.  I want to walk with the fast paced walkers here in Canada. I want to do a Mudder race here in Ottawa. I want to hike mountain trails in Hawaii. I just want to wake in the morning and walk to get a cup of coffee. That is where all this started, walking pain free.  I choose to abandon my pain and have the BK amputation.  I am still very excited for my new life. I just need to get through this tiny speed bump.

Every day I am stronger and stronger. Physically AND mentally.

Healing after surgery…

The healing phase is like watching paint dry.

The End

Healing has been the hardest topic to write about.  This “healing” phase is the hardest thing I have ever had to do.   Why?  Because it requires me to let go of control and stay still.  And, if I do not follow the healing directions… I will not be able to have a prosthetic fitting or walk the beaches with my husband.  Healing from the amputation, was a walk in the park compared to the healing with a DVT* (Deep Vein Thrombosis).  Healing is a physical AND mental journey.

*blood clot in the large vein, the full length of my “good” leg and into my groin

My healing homework is to move but not move.

Yes those are the directions from my health professionals.

  

I need to move to help break down my DVT (blood clot) so that my body can absorb it organically.   Moving (doing my physio) also helps the healing for my amputated leg.  I am loosing muscle fast but I know when this is all done I will be back in the gym rebuilding my dreams of running and hiking the trails in Hawaii.

AND I need to NOT move… My DVT leg begins to swell and turn dark red quickly because of my blood clot, so I must get it horizontal.  My blood clot leg is only using the small veins to send and receive blood from the heart, because the large vein has the blood clot.  So it is a fine balance of knowing how much to move and when to go horizontal.

The mental healing is also challenging.  I am stuck in one room with a bed, tv, lap top, commode and a walker. Also a yoga matt.  I can walk (hop as I only have one leg) about 20 feet before I must put my leg up, which is part of my daily physio.  I am going stir crazy/shack wacky from being physically limited.  I am someone who normally does not like to stay still.

This immobility has been the most humbling thing I have ever gone through.  Have you ever needed someone to clean out your commode?  The first time my girlfriend insisted on doing my commode I cried, I felt broke.  That was the lowest and strongest day of my healing.  I thought (after the day passed) how THANKFUL I was to have a such a friend who would do that for me.

I challenge myself every day with what I CAN DO.  I CAN use my wheelchair to get around with both legs up on an extention board.  I CAN do the dishes from my wheelchair.  I CAN wipe the table down.  And, with the help of my grabber I CAN pick up items on the floor.  I CAN!

If I can spend the day finding things I CAN do what CAN you do today?

Courage means, Believing you CAN

has been 26 days after my below knee amputation and…

I am humbled by the amount of people that have reached out and blessed me with the word COURAGE.  Every time I read a post saying “Joan you are so courageous”… I always asked myself why are they saying that I am courageous?  It finally sunk in… yes I do have courage, I made a courageous step towards my new future.

Well Last night I was challenged by that word, COURAGE.  How could one feel like wonder woman one moment then feel completely stripped of all power of positive thinking in a blink of an eye.

Yesterday I was rushed to emergency after meeting with my surgeon.  I told him that I was feeling achie all over my body. Because of my recent surgery my Dr. ordered an ultrasound to rule out a possible blood clot.  Unfortunately the test revealed a very large and long blood clot all down my leg. Not my stump leg, but my “good” leg.  We were lucky to find this clot.  I am now on the recommended medication to stop the growth of the blood clot and begin to heal, once agin. phew, just another speed bump right?

So how was I challenged with this little word COURAGE?  I felt fear, I felt vulnerable, I felt scared of things out of my control and those are not descriptions of COURAGE.  Faced with this new obstacle came a new opportunity to learn more about myself.  In the emergency room I spent my time crying, asking myself “why”.  What did I do to cause this?  What did I not do that caused this?  What will happen to me?

After a few hours of  this struggle of the unknown I remembered that positive thinking is the best medicine.  And right now I realized IT was the only thing I had on control over.  Think positive.

Doctors were saying that this “was a big deal” and they also said that I “should” be fine…  What I heard was “its a big deal, be afraid” AND I “should be fine, but you never know”…  It is interesting, when you are feeling fear and vulnerability what the mind hears… negative.

So I realized I need to start BELIEVING that I will be fine.  My body will break up this clot and.. I will recover in a timely fashion.  It is OK that this may change the timeline of my walking on my new prosthetic leg.  I am still blessed with the gift of a pain free life.  How did I believe?  I did not have an option, I told myself those words that “I will heal, I am healthy, I am lucky, I am strong”.  Fake it till you make it.

So here I sit… Day 1, back in the hospital on St.Patricks day planning out my new physio exercises with the PT.  Relaying to family and friends that “Yes I am good and this is just a speed bump”.  Doctors say this will take a good 3 months for my body to break up the clot and make it go away… I am thankful.

14 days after my BK Amputation

Update: I am doing very good, humour and a positive attitude are my 2 best friends.  Incision is healing as expected, stitches are coming out this Friday, I am meeting my rehap/physio Dr. this Thursday to get details on weening off the meds, starting more exercises, getting dates on when the fitting will be for the prosthetic…

Now for the Emotional Update… I have no regrets, I knew this was going to be hard.  The pain is mostly under control.  Some days it is hard to get comfortable because of the pain in the incision and phantom sensations*.  I just want to get to rehab and move on to the next stage.  But the healing part is also a learning part.  Learning to chill, not stress.  Learning to take naps… (not my usual schedule if you know me well)
* phantom sensations  of the amputated appendage, are when you have a feeling like your toe is cold, or your heel is itchy.  It is also like the feelings in the stump are lower as if in my foot.  Some things I am doing are massaging the missing foot while looking at it, or pretend scratching the missing area.  The brain has a map of sending feelings via nerves down to the foot which needs to be rebooted.  While looking at the empty area and scratching it the brain is slowly re-maping where the nerves send feelings too.

I have been home now for 7 days and I am starting to see the stress I am causing on the home dynamics.  Maybe stress isn’t the right word and maybe its me, feeling incompetent to have to ask someone to do something for me.  It is very difficult to be sitting in my chair and see something on the ground that I need and then having to ask someone (who may be doing something else) to come and pick this item up for me.  Or standing close by as I climb the stairs with my crutch.

I am not handicaped, I am handicapible.  I am a fully capable person like everyone else.  Once I get my prosthetic I will hike, run and feel free to move and dance, pain free.  Before the surgery I WAS handicaped.  My handicap was an invisible handicap*.  People just saw a normal person who had nothing visible that considered them “handicap”.  It wasn’t something I talked about. most people had no idea what I was dealing with for the past 45 years.

People are still asking… “Why did I choose to have a BK Amputation?”

Answer:  I had Trauma Induce Osteoarthritis in my right ankle caused by a drunk driver that hit me when I was only 5 years old, their car knocked me down to the ground and then dragged my foot under their tire as they slammed on the breaks.  I died at the scene of the accident, my neighbor (Uncle Mike) performed CPR and got my heart going again until the ambulance arrived.
In the hospital, the doctors sewed my foot back together and I spent 3 months in the hospital healing.  As I aged the pain increased to the feeling of having a broken leg, but I learned to live with it.  My pain level varied depending on what I did during the day.
2017, starting in June, the bones in the ankle started to collaps, the skin graph started to deteriate and leak fluid all day.  I was seeing nurses every 2 days to redress the bandages on my foot, due to leakage.  I had to place my foot above the heart for at least 30 min. every hour, limiting me to sitting on my ass for most of my day.  The foot was done.  I was now ready to let it go, after dragging it around for 45 years.  I have done everything possible to extend the use of this foot over the past 45 years.
Before this surgery, I spent months researching options,  speaking with medical professionals, getting second opinions from different Orthopedic surgeons.  Talking with other amputees to see what exactly I was getting into.

This BK amputation is the best gift I could have asked for.  My Birthday is coming up… April 15th, I enter into the awesome age of 50.  So watch out world I will be the me that has been supressed for so many years.  I have been yearning to just dance, jump up and join the parade 🙂 without suffering in pain for days after.  My Birthday gift wish is one of these awesome prosthetic covers… Canadian made at Alleles Design Studio in Vancouver. Here are a few pics of what they offer.  I will rock this prosthetic, I will own my future!

    

9 days after my BK Amputation

A lot of people have been sending me personal messages asking… “ok Joan, you are all smiles in the hospital pics, tell me how are you really doing?

WARNING *some wording below might be a little graphic (I decided not to add pics yet).

First off, I appreciate the message to see if I am really ok, Thank you… everyone.  Yes, I am.  I may not be smiling all day long like in my pics, but I really am ok.  This surgery was something that I am so grateful for.  This surgery is an opportunity that will open many doors for me…  That makes me smile.
A lifestyle of Living pain free and being able to walk just like everyone else.

To answer your question, yes I am ok.  And yes it is hard and painful.
I don’t have good and bad days… its more like having good and bad hours during a 24 hour period.  Right now I am on a medicine schedule of five different drugs, every 4 hours.   Some for pain (a lot for pain), some for nerve pain, some for swelling…  I can always tell when I am getting close to my 4 hour mark to take my next dosage of meds and in the evening, I am awake a good 30 min before the alarm rings.

Day 8 was a quick trip to the emergency room with my driver & good friend Connie.  The nurse who came to visit me at home noticed while changing my dressings, a yellow and green discharge around the wound, which are all signs of infection.  Being a good girl I went straight to emergency room at the Civic, where my orthopaedic surgeon (Dr. Lalonde) works out of. Dr. Lalonde was able to see me fairly quickly and gave me 2 thumbs up… no infection.

What looked infected were the two blisters under the incision which had burst and did not look pretty.  It is common to get surgical blisters, and yes I got them.

He asked me if I was up on my ‘foot’ often and shepishly admitting, I said yes.  He said to be patient and rest.  I was rushing my recovery by moving around too much and doubling up my home physio floor exercises.  I just want to get back in the gym and into my new leg.  Again, patience is not my best virtue.

Day 9 I had my first fall.  Yes it hurt, but I didn’t do any damage to the “stump”.  First of many falls I am sure and I am not even drinking.

All in all, I am getting er’ done.  Timelines are different for everyone who has had an amputation and I am learning how to have more patience.  Suspected timeline…
2 weeks out – remove stitches.
2.5 weeks out – get a compression sock to form my stump.
6 weeks out – start rehab/physio for a prosthetic.
8 weeks out – walking part time in my own custom made prosthetic.
I will be in rehab/physio all day every day at the hospital during my physio.  It will be a good 6 months or more till I am full time in my new prosthetic.  Below is a pic of one of my dream prosthetics to have in the near future. By a company called Ottobock.

6 days after my BK Amputation

So most of my friends have read my previous post, which explains a little bit about my Below Knee Amputation (It always sounds like Balogna Amputation).  If your interested… here is a follow up on me today 🙂

Day 6,
Just met with my surgeon (the beginning of my morning daily routine while here in the hospital). He says that “I am very motivated person and that my stump looks good”.  The surgeon also feels strongly that I will be fine in my new life, short and long term.  Meaning: I am someone who will do the required work to have the best outcome. Someone who also will not over do it, which could ruin the work they did in the operating room.  Again those of you who know me well, will not be surprised that the Dr. said that.  I am a f’n rock star.  At least you have to feel like that, to have the energy and power to TRY!

  

He also told me that the head surgeon in the operating room said during the operation “WOW, this is a good looking stump”, haha. That is exactly what I told my friend that he would say at the end of the surgery, to give myself confidence and to think positively.  The power of the Universe… just saying

 

So…

 

There you go.  I will more than likely be able to go home Monday, no problem.  A few complications here and there over the past week but…  I made it through with flying colours.  Thank you to all the staff, nurses, and doctors… here at the Civic Hospital.  I’ve never been treated so well, and appreciated the professional bedside manners and humour.  The food… lets just say thank you to Samantha (my middle daughter) for the protein shakes and home made cookies 😛

    

 

 

 

 

 

 

You know, I really did not have the option to fail at this first step (the surgery part).  The person inside of me wants to break free and get out and move. I want to run. I want to move and dance. I want to do a Zumba class and shake my booty 🙂   I want this so bad that the pain and the hard work don’t scare me. They are just obstacles I must conquer/crush in order to stand taller.
In the mean time… have a look below at some of the physio exercises I get to do here in the hospital.  (my oldest daughter had a chuckle when I showed her these pics. I forget that it is weird to see amputees doing regular things like leg lifts, swim kicks).  I respect your thoughts on not wanting to see it.  But you know me. this is me, all of me.

    Thank you for reading, this means a lot to me.  We are not alone (and I do not mean that aliens are among us).

Decision made… Surgery Day

  

I thought it would be pertinent to explain what is going on with the hospital pics on FB. Actually, my dad said “Joan, maybe it would be a good idea to lay out a little road map, because people are asking (what is going on?)”.

 

I was diagnosed with trauma-induced Osteoarthritis when I was 17.  I have lived with chronic pain now for 33 years, with the pain steadily increasing and mobility being limited.  This past summer (2017), my foot decided it was done.  The top area of my right foot (the main body part injured in the car accident) started to collapse downward and the original skin grafts were leaking a fluid, and the pain now was getting worse day by day.  I had to do something, and my options were limited.

The option to have a new ankle replacement was now no longer a solution.  My ankle would not be able to provide support to hold the new ball and socket.  The whole area around the ankle looked like (via x-rays, MRI’s, CT scans) … the milky way.

The only two options available at this point, were Fusion or Amputation.  Anyone that knows me personally, knows that I am a very active person with dreams and aspirations to get out there and LIVE.  I am not afraid of choosing the hard path if it meant a better mobile future.

It is a very hard decision to choose  amputation.  It was not an easy one, as you can probably imagine.  I have been over the pros and cons, again and again and always came to the same answer… amputation.  I met with specialists to get all the details of my options.  From plastic surgeons to 2 different orthopedic surgeons, MRI and CT scans.  The right decision always came to amputation.

So here I am, embracing the new me as a below knee amputee.  Today is Day 1, and I can’t wait to take my first step with a new prosthetic leg.

  

 

You are asking… Why Amputation?

  

At age of 17 I was diagnosed with Trauma Induced Osteoarthritis in my right ankle.   I was told that by age 25 the ankle would need to be fused.  Being the stubborn person I was, I pushed through the pain and limitations till now.   I worked hard at staying fit (somewhat) and making it to semi regular chiropractic ankle adjustments.

What caused the Osteoarthritis?

When I was 5 years old I was hit by a car outside my home in Kaneohe Hawaii.  All the kids from our street were playing “chase master” (tag), and I did not want to be “it”.  I ran into the road without looking both ways…  When the car hit me all I can remember is the silver chrome on the front fender.   My foot was stuck under the tire as they slammed on the breaks, dragging the foot and myself for about 10 feet.  My neighbor (my Uncle Mike)  thankfully knew how and was able to perform CPR, which started my heart back up and kept me going untill the ambulance came.  I am forever grateful for him saving my life.

Unfortunately my parents were sailing in between the islands and unable to be in the hospital for the initial surgery.  My parents had to be called on a CB radio to give permission to operate and it was crucial that the surgery was done quickly after the accident.  I must also add that the accident was a hit and run, although the driver eventually stopped a block away.  I was in the hospital for 3 months as they rebuilt my foot/ankle and taught me how to walk again.

I have been living with chronic pain for many years now.  This year as I am facing my 50th birthday, I am lucky to have the option to be pain free and have mobility once again.  I have dragged this foot along with me for 44 years.  I have the option now to get a new life by getting a new foot and I am going for it. I will be able to walk where and how long I want to, even run.  I will be able to live a “normal” life, without having to be drugged up at night to ease the pain that walking has caused.

           

I have done a lot of travelling and never complained.  This winter I will undergo a very serious but necessary surgery.  Below the knee amputation. It will not be easy.  It will be a long and hard recovery. There are chances of complications.  But… I am ready.  I have and am doing everything I can to get my body and mind ready for this adventure.

  • Working with a trainer to work specific muscles and body movements that will be required in my future.
  • Attending acupuncture appointments to keep body energy flowing.
  • Working with a Holistic Nutritionist (Jessie Deek RHN) to get in a healthy eating routine.
  • Working with a Naturopath (Dr. Guy) to ensure my body is naturally firing on all 4 cylinders before and after the surgery, including Vitamin IV treatments.
  • Working with a Life Coach (Catherine Hull) to ensure I have goals and plans to look forward to especially during the hard times.
  • Chosen the best Orthopedic surgeon in Canada 🙂 (Dr. Lalonde), head of the orthopedic department at the Ottawa General Hospital.
  • Met with Rehab specialist (Dr. Dudek) to ensure my body is a good candidate for the surgery and the prosthetic foot to come, and to let her know my goals so that she can plan the approperite rehabilitation physio program after the surgery and wound healing.
  • Reading and researching along with looking at the Pros and Cons.  My favourite blog to date is “Life Beyond 4 Limbs“.  Amazing story and attitude of the author.

So my story now restarts HERE!

I was a kid with an “Invisible Handicap”

After being hit by a car at age 5, I was never the same, physically and mentally.  Physically… I had to modify all my movements to keep up with being “normal”.  My injury was not something people could see (besides the big scar on my foot).  Everyone just saw a cool scar and why should that hold me back from walking normal or other physical movements like running, skipping or school/class athletic activities.  They did not see what was happening under the scar, in the ankle.

Mentally… soon after I returned home from the hospital a child friend of mine, who was there when I was hit, came up to me and said “I laughed when you were hit”.   Woo, ok.  How does a 5 year old process such hate and jealousy.   I internalized that of course.

My whole life, I always felt I had to prove myself to everyone that I was “normal”.   I didn’t ask for this extra attention adults or teachers would give me.   Since the accident I always had a limp and my foot was turned out.  All the way from Grade 1, I was teased on a regular basis for being abnormal.  I was not given the freedom to skip or play hop scotch without someone teasing me because of my limp or “funny walk”.  Ok, some of you may be laughing and say, “oh come on, suck it up that isn’t that bad”.  But for a kid who just wanted to fit in, it sucked.
(disclaimer… I know there are worse, much worse life stories out there, please, no disrespect meant.  I am just sharing my story)

I remember in grade 6 my teacher gave me permission to do a double hop instead of a skip in a school event, many kids were laughing and pointing. They never let me forget that I wasn’t “normal”.  I missed a year of school because of the accident which made me uncomfortable sitting in class and not understanding what was going on.  I stood out too much at this point, last thing I wanted to do was raise my hand to ask a question.  I don’t blame everything on my accident.  But it sure was a turning point in my view on the world.

As a kid, I could have brushed it off and went about my own business and just chose to be myself.  And be happy with my “limitations”.  But I chose the hard path, I was always trying to fit in and be normal.  I wanted to run like everyone else, I didn’t want a free pass to skip out on a school exercise.  I wasn’t normal.  I was Joan.  I am ok with my past.  It just took me a little longer to find out that I was special.  We are all special in our own ways.

Good stuff happens when you begin to find your strengths and let go of your weaknesses.  “Let that Shit Go”

Now to just find my way back to the islands.  This Winter thing sucks!