Mindset is everything!

Greetings, friends!

Have you ever needed to use something because it is a necessity but you absolutely despise it? This is my current relationship with the knee brace. This darn knee brace is cumbersome, annoying and oh-so-uncomfortable. Not painful, just uncomfortable!

The original knee brace I was going to use was a static stretch brace, however, you need to have a 60-degree bend, and my knee is locked at 50 degrees, so I am using this dynamic brace until I can bend at 60 degrees.

The purpose of this contraption is to bring flexion back to the knee over a period of time. I need to wear this three times a day for an hour each time. Here’s what was explained to me about the difference between static stretch vs. dynamic: dynamic is meant to get the joints and muscles moving, while static stretch exerts the muscles at a higher intensity and keeps the brace locked.

This is interesting to me because the dynamic brace seems to be “locked” and seems pretty intense so I can’t imagine how much more “intense” the static stretch will be, but I guess I will find out when the time comes!

I was so proud of myself for ironing on patches and inserting rings so I can use my OT tools to assist me in putting on this brace. We all know the story – I can’t bend down enough to reach the bottom of the brace, hence needing the workaround with the tools.

Since it is difficult to get the last strap around the bottom and I have to maneuver and fight with the strap, I am already frustrated by the time I get the brace situated!

Then, it’s time to literally crank the brace so I can determine what the best tension is to hold the knee at that degree. Originally, I thought I could do schoolwork while the brace was on for the hour. Wrong!

It is so uncomfortable that it’s difficult to focus on anything except how much time is left on the hour-long-torture-device!

So here’s where mindset comes in. I’m thinking that after a while of doing this, it will become second nature and I won’t need to focus so much on being uncomfortable.

I was remembering when I had the cement spacer holding my hip and femur together (sorry medical friends, I’m not familiar with the medical jargon!) and how uncomfortable it was, yet I lived that way for 1.4 years!

How about the time my brand spanking new hip dislocated and I had to wear the hip abduction brace? Remember this?

At first, it was uncomfortable and took a little while to get used to, but then my friends, then, that brace and I became friends and it was a security blanket so to speak. I liked the fact that I knew it was keeping my hip in place and it lessened my worries about another dislocation.

I’m thinking that after a while, this knee brace and I will become friends. Why? Logically I understand I need this to work so the flexion in my knee increases and I will be able to do “normal” things again. Sit more comfortably without needing to extend my leg out straight. DRIVE which equals FREEDOM! The list is long!

The hard part is focusing on the negative and the frustration. As with anything new, it takes time and patience, and if I have learned anything about myself, it is that I am very patient and resilient. I am also extremely fortunate that I continue to make progress because, frankly, as my surgeon says, there has been so much trauma to this leg that any progress is good progress!

We have all frustrations in our lives — it’s all about how you deal with them. I hope your frustrations are few and you find a way to make it work. Here’s to this knee brace working!

Until next time, be well and go out and do a random act of kindness!

Jewels

 

 

Be strong, be confident, be fearless … and know that it’s okay to worry along they way.

Greetings, friends. Hope this finds you well!

I have some new followers and women who have reached out who are incarcerated and looking for a little dose of inspiration. Welcome to my blog! The intention is to keep folks updated with my progress and spread a little inspiration, hope, and kindness. Hopefully when you read my blog, it will do just that.

New things are taking place that are both exciting and scary!!

My lymphedema/occupational therapist is tireless is finding what will work so that I can get out of my leg wraps and get into a compression garment that will control the swelling from lymphedema and garments that I have the ability to get on and off by myself.

Let me just say – this has not been an easy task! As you know, I have limited flexion in my knee and I have a hip restriction which makes handling these compression garments challenging to say the least. After trying several garments, we may have found a solution! You’re thinking, REALLY?!

Yes, my friends, I started wearing a hybrid sock (below) that has compression in the foot through the ankle and I have a second garment (below) that I wear to control the swelling in the leg. Both of these items I can get on and off by myself, using my OT tools!!

It is always scary to try new items because my foot is so sensitive and fragile from my surgeries. I have an internal battle with myself where I have to calm my fears of my foot opening up again. Trying things that may work is scary, but I have to move forward as I need to get out of this orthopedic boot and into a shoe.

It’s been a few days, and so far everything is fine. I always feel like I am jinxing myself by sharing news like this, but if I want to share my experience in the hope of inspiring others, I need to talk about it.

After 4-6 weeks of wearing these garments with no issues (foot opening up, infection, etc.) I will transition out of my boot and back into a sneaker. A SNEAKER! It has been 4 years since a shoe has been on this foot. How crazy is that?! So while I am extremely nervous, we move forward and what will be, will be.

If I don’t try new things, how will I know if they will work? Fear cannot stand in the way of my progress. I need to remain confident that things will work out.

In addition to this, my best friend made me aware of a knee brace that may help get some flexion back in my knee. She (best friend) is a physical therapy assistant and heard of this knee brace so I sent it to my orthopedic surgeon who said it is okay to try it!

That’s the thing – you have to be your own advocate and find things that will improve your situation. By talking to others and reaching out to say hey, do you know of x, y, and/or z, you may just be surprised in what you find.

This knee brace looks daunting but I am up for trying it. Right now, I can’t drive as I don’t have enough bend in my knee to clear the driver’s side door. Trust me, I am scared to try it but I can’t hold back. I need to get my knee to bend more. Right now, my knee is locked at 50 degrees which is a problem!

While I am scared with the changes we are making and new things we are trying, I am also hopeful and confident that these things will improve my overall health and that I am closer to reaching my goals.

Regardless of what obstacles you are up against, be confident in your decision to trying new avenues that will help you reach your goals. If we aren’t trying to better ourselves, our situation, or our environment, we will never be successful. I don’t know about you, but life is too short and too precious to be in a place you don’t want to be.

Find the courage to move forward and make your life as beautiful as it can be.

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

 

Round and round we go …

Greeting, friends.

My appointment with my orthopedic surgeon went well and the x-rays looked good. The prosthesis is in place and we believe the soft tissue is forming around the hip after the dislocation last year. Of course, you don’t see soft tissue in an x-ray but the fact that the hip has remained in place is a good sign.

I explained that my leg and hip are “achy” and I’ve been having a hard time getting comfortable at night and have difficulty sleeping. Some of this is due from being away from physical therapy and some of this is simply from the trauma that this leg has been through.

My surgeon is always impressed by the progress I make but I always have questions. Should I be further along in my progress? Should I be able to bend my knee more? Why can’t I get these compression garments on?  Should I, can I , when, why, etc., a million questions with no definitive answers.

Trust me, I know how lucky I was to survive Ewing’s Sarcoma bone cancer and how fortunate I am that we were able to save my leg and foot. I.get.it. But that doesn’t mean this process isn’t frustrating.

I need to be able to get out of this orthopedic boot and into shoes again but in order to do this, I need to find compression garments that will control the lymphedema and not irritate the area on my foot where it is most vulnerable.

Dealing with lymphedema and trying to find compression garments that I can actually put on by myself is extremely frustrating. Frustrating because I can’t reach far enough to put on any garments and I struggle using various tools. I’m not actually sure how a person with “normal” flexion can get compression garments on because these garments need to be so tight in order to do their job that it makes it hard to get them on.

The original compression garment we ordered does not work as it is too tight and we could not find a way for me to get it on by myself. Now we are trying to use a hybrid garment that has more compression in the foot area and a little less throughout the rest of the garment in conjunction with a leg wrap garment. Because I have swelling from my knee down, I need compression throughout this area.

This new hybrid garment is a tad easier as it has more compression in the foot area and less throughout the leg area, making it a little more flexible. While I can’t use the original device to get the garment on which would control the friction in the foot area, I can use another device to get this garment on, we just aren’t sure how it will, if at all, impact the area due to friction. I still struggle but I did manage to do it! (It needed to be adjusted a little to cover the entire foot which I can’t bend to do but I believe I can work on it to perfect it!)

The problem is the leg wrap. It is an open garment that you wrap both sides to create compression from below the knee to the ankle. I haven’t figured out how to manage this as the OT tools I use can’t hold the garment in place while I try to bring the garment around and the OT tools slip off the garment as well. Originally I thought I could put “rings” around each wrap like I have on my boot so the OT tool can hook on them, making it easier to bring the garment around the leg  (there are 5 wraps to cover) but then the rings would get caught in between each layer.

       

Another issue is what to do each night after taking these garments off to control the swelling. Do we wrap the leg as we have been doing? In theory it sounds fine, but the reality is that I can’t get the wraps on by myself either because I can’t reach. So the question is, how do I then get the leg wrapped? Magic fairy?

Sometimes it feels like I am going around in circles trying to find a solution to get out of this boot and control the lymphedema.

My surgeon said we try everything possible as it is really trial and error to see what works. I can appreciate this but it is frustrating!

I wish there was someone who can say, I had the same problem and here is the solution! In the meantime, I will continue to try everything and anything with the hope of something that will actual work.

Cancer certainly wreaks havoc and leaves behind reminders of how powerful the damage can be, but I always remind myself that I survived and have lived 34 years on this damaged leg.

I need to keep looking forward because that’s where I am going.

When you are reading this I hope you remember, whatever your obstacle, keep focusing on your goal. Some days the struggle is real but keep your eye on the prize.

Until next time, be well and go out and do a random act of kindness.

Jewels

 

Strong women …

Recently, I was scrolling through Facebook and came across a post that this sweet, sweet person wrote about how she was having a good old-fashioned pity party and about how she found gratitude for all the good in her life and moved on. This resonated with me as I have had days like these. Haven’t we all?

Days where we feel completely overwhelmed with … life.

Some of us are working, raising a family, dealing with an illness, fighting a disease, missing loved ones, and the list goes on, and we all just do the best we can. Some days are easier than others!

The person who posted that is a gal named Lauren, and she is a friend of my daughter. While I have never met her, I will never forget the kindness she showed me when I was first in the hospital. It was a rough hospital stay and I remember getting flowers from this kind soul to brighten my spirits – someone I had never even met! (I hate to say it but I feel terrible that I never sent her a proper thank you card for those flowers once I was home from the hospital – sorry, Lauren! The flowers meant a lot and did lift my spirits).

Lauren is the epitome of a strong woman. She is married (her husband has been in the Army for 11 years), has three children, ages 5, 3, and 1, and runs her own makeup business. (Awesome makeup – http://www.CrazyLashLauren.com). She always seems so positive, regardless of what is going on in her life. Lauren keeps it real my friends and I love that about her because life is not perfect.

Luckily, I am surrounded by strong women. My daughter is another example of a strong woman. She works full-time, is recently divorced and trying to navigate life post-divorce with a soon-to-be five-year-old, and is always doing random acts of kindness or nice things for others.

I admire my daughter for being brave enough to realize that life is short and knowing she needed to make hard decisions to have inner peace. She has no idea how strong she truly is, and I hope one day she can look back and realize just how courageous she has always been.

Two of my best friends have each found themselves raising their grandchildren when the parents of these children couldn’t manage to do so. It was difficult enough raising our own children when we were young and full of energy – can you imagine how it is now, years later, raising grandchildren? I should also mention that one of these amazing women is now a 5-year breast cancer survivor, they both work full-time and they never gave it a second thought to jump in and help!

These women are strong and inspiring. They move me and countless others and probably have no idea what an impact they are making.

Life can be complicated and messy at times and I have found that the strongest women show such grace in the face of adversity. Yes, pity parties do happen, but I say embrace them because we all need a good cry every now and again!

I have had all the feels lately because today, March 22nd, marks 4 years since breaking my leg. Four long years of ups and downs, triumphs and setbacks, and, at times, a pity party for 1. See the connection here and why Lauren’s post really struck a nerve?

It is incredible to me that 4 years and 22 surgeries have gone by so quickly. It’s funny because at the start of every year, I proudly announce, “THIS IS GOING TO BE THE YEAR THAT I CAN WALK ON MY OWN, DRIVE, GET BACK TO WORK, AND PUT THIS BEHIND ME.” And each year keeps passing me by and I feel as though I am standing still at times.

 Progress is being made and while I know that is the most important thing to remember, this process has been long! As my granddaughter says, it is taking forever! At the moment, I continue to struggle with how to get the compression garment on and off by myself. A person with no hip restrictions and perfect knee flexion would have a tough time getting this compression garment on, so to say that I struggle is an understatement.

We will continue to brainstorm and try different ways to successfully master this task. In the meantime, I continue to work on my own and will be getting back to physical therapy soon. Since I have been away from PT, my leg and hip do feel a little stiffer, but I am confident that I will continue to make progress.

Some exciting news – I have been accepted to grad school, starting in June! Master of Science in Nonprofit Management and Philanthropy is my focus and I am beyond exited to start! My goal of starting a foundation or running a nonprofit is hopefully in my future!

So, on the rare occasions where the tears flow from frustration and the pity party starts, I always remember that I am grateful that we saved my leg and foot. Grateful that I wake up every day and have the opportunity to spend time with my family, and that I have the opportunity to use this time to go back to school.

As Lauren said, we find our gratitude and we keep going. And that my friends, is what we need to remember during our times of frustration. There is always something to be grateful for if we open our hearts to notice it.

Until next time, be well and go out and do a random act of kindness!

Jewels

 

 

Making an impact

Greetings, friends.

I hope this post finds you well. Here I am, at the end of my undergraduate degree program at Bay Path University (www.baypath.edu). It is hard to believe that in less than a week I will have completed my degree and will have a few months off before starting my Master’s Nonprofit Management and Philanthropy. Well, that is, if I am accepted! Fingers crossed.

So, this last class is my Capstone on Leadership in Practice and I based my project on my blog. Why you may ask? Great question! The reason I started this blog was because I have undergone a serious and life changing medical journey and have been blessed with the great care I have received, and the wonderful friendships I have made during an extremely painful time. Literally and figuratively – in every imaginable way!

This blog is intended to reach out and speak to you – the readers, fellow bloggers, strangers, and new friends. It is meant to say, I have been where you are and I have lived to tell my story so I could offer a few words of encouragement and provide even the tiniest of hope.

It is for cancer survivors, such that I am, to say – I know, chemo SUCKS, radiation SUCKS and living through cancer can be the hardest thing we do, but I am here to tell you – I lived through Ewing’s Sarcoma bone cancer and you can live through your cancer.

Ewing’s Sarcoma cancer is a rare bone cancer and often times involves amputation. (https://www.cancer.gov/types/bone/patient/ewing-treatment-pdq) While I was lucky enough to keep my cancer filled leg, the radical radiation I had created significant damage. So here I was, 30 years later, walking down stairs and that same leg broke. PAINFUL to say the least! It was terrifying seeing the X-rays and how the break looked.

Yes, this was the break. My poor leg.

March 22, 2014 started off as a normal day. It was an extremely cold day, but I love the cold! Winter is my favorite season and the cold never bothered me, except my leg often ached as I have arthritis in this leg, so the cold, rain, etc., always seemed to make my leg a little stiff and achy. I went to breakfast with a friend and then picked my Mom up for our usual Saturday afternoon of running errands, playing cards/games, and having lunch or dinner together. After running our usual errands, my Mom came back to my house but I told her my leg was really bothering me (thinking it was from the cold) and I asked her if it would be okay to skip games and lunch. Of course she didn’t mind and as we were leaving so I could take her home, when I was walking down a stair, I heard a very loud pop or snap and my leg went limp.

It was such a bizarre feeling – I was in excruciating pain, yet my leg felt as though it wasn’t attached to my body. It sort of “hung” limply. I asked my Mom to take off my sneaker and the orthopedic brace I wore for my drop foot (https://www.mayoclinic.org/diseases-conditions/foot-drop/symptoms-causes/syc-20372628) and I tried to stand up. Easier said than done. While I was able to stand up (feeling sick to my stomach) I couldn’t apply any pressure to my leg. I felt my leg to see if I could feel anything protruding, but I couldn’t.

My Mom felt sick to her stomach and had to go inside. So there I was, sitting on the second stair, needing to get back inside so I could lay down on the kitchen floor at the very least. I managed to lift myself and my leg up the two stairs and I dragged myself into the house. Here, I laid down on the kitchen floor as I was feeling very “shaky” and started calling my friends – anyone who could bring me to the hospital.

See, here’s the thing – when I had cancer, I was constantly being transported from Springfield, MA to Boston, MA (90 minutes with traffic flowing) via an ambulance, so the idea of needing to call an ambulance terrified me because the memories bring back a dark period in my life.

As I called one friend after another, with no answer, it dawned on me that it was race day! Most of my friends are runners and it was the Holyoke St. Patrick’s Day road race. OH.MY.GAWD. How was I going to get to the hospital?? Thankfully, I called my friend who lives just over the Connecticut border and she was home and answered the phone!

I think when she heard me calmly pronounce, Hey Deb, so, I think I just broke my leg or fractured my hip and I need to go to the ER … it frightened her a bit, but man, she hopped right in her car and 20 minutes later, it was Diva Deb to the rescue! Deb and my Mom were able to get me downstairs and into her car in record time and off we went to my local hospital.

Mistake #1. My local hospital’s emergency room is used as a primary care facility. I am not kidding you – people apparently go there for the common cold. This particular weekend, the ER was filled with very interesting people. People who had too much to drink at the road race and could hardly stand; a young girl who would randomly shout crazy things out; a middle-aged man who had a … cold? You name it, they were there.

Now, to be honest, I certainly didn’t do myself any favors when Debbie (friend described above) wheeled me in (she found a wheelchair somewhere) and I was cool as a cucumber, calm as can be, and I say to the intake woman, Hi, I either broke my leg or fractured my hip walking down stairs and I need X-rays, please. Her response was, would you like pain medication? See, here’s another thing – I don’t like taking pain medication. I know, it’s weird but I am type A personality and I like to feel as though I am in control of situations. Taking pain meds would make me feel out of it, so I politely responded, No thank you, I have Tylenol in my handbag. If I can please have water, that would be great. 

So … a very long story short, after sitting in the ER for 8-9 HOURS, (I went into shock around hour 6) it was my turn to be seen and have X-rays taken. I will never forget this very nice, young, and new X-ray technician who was obviously training. When she and her trainer were looking at my X-rays, I heard her say, Oh my gawd, is that the break? That is so bad! I yelled out – Is it my femur? Did I break my leg? The trainer and the newbie were mortified and the trainer, who was very sweet, said, I’m sorry, the radiologists will have to speak with you about this. Meanwhile, the new girl is standing behind her, shaking her head YES.

Off to the triage area I go where the resident on duty (who could pass for about 15) comes to speak with me to tell me the bad news. He puts my X-rays up and says, So I have never seen a break this bad and this is above my pay grade. WHAT? Are you kidding me? This is who they sent to explain what actually happened and what the fix is? You.must.be.joking.

Oh, I forgot to mention, that after about 6 hours, one of the friends I had originally called, Erin, returned my call and came to the hospital to relieve Deb who was gracious enough to have stayed so long. Erin, who is a physical therapist, is with me when Dr. I-need-some-serious-sensitivity-training is talking and saying that when “I fell” my leg broke, Erin gets rightfully annoyed and tells him to STOP saying I fell. She kindly explains as I have, that I was simply walking down stairs when my leg broke – I did NOT fall! Pay attention!

The time with this resident was a complete waste. He could barely answer our questions and off I went, hours later, to my room. At 3:45 AM. I got to the hospital around 1:30 PM. Exhausted and completely devastated, the anesthesiologist comes in shortly after, asking me to sign consent forms as surgery was scheduled for 8:00 AM. When I tell him that I need to speak with the surgeon before I have the surgery, off he goes to see his next patient.

I meet the trauma surgeon on call, Dr. Bennett Burns, who is AMAZING, and we discuss my prior history with Ewing’s Sarcoma and I ask him to consult with my doctor in Boston. Ironically, he knows my Boston surgeon as he refers complicated cases to my surgeon! An hour and a half later, Dr. Burns tells me that the ambulance is on its way to bring me to Boston as my case is extremely complicated and my surgeon in Boston prefers that I am cared for there.

The next 7 days were complicated as we first needed to determine if the break was from wear and tear on a fragile leg or if I had Radiation Induced Cancer which happens in your 30th year after having radiation. After having a biopsy, we discover the break happened simply from wear and tear on a badly radiated leg. My orthopedic surgeon put rods and screws in to fix the break and after several days I went home.

Things didn’t go as planned, as I developed pressure sores on my foot due to a blockage I had. This was one of many setbacks that occurred over the next three years! The blockage left blood flow to the foot at 0.18 which wasn’t good. Through the next two years, I had several vascular surgeries to clear the blockage; several angioplasties; and I had two stents put in my fragile leg. Through grafting surgeries and a free flap surgery, we were able to heal the foot.

During this time, a year after originally breaking my leg, the break failed to heal and I had a non-union of the fracture. My femur essentially collapsed, my femoral head crumbled and my hip fractured. The hardware (rods and screws) were removed and a cement spacer was put in to hold my hip and femur together – for over a year! Once the foot healed, we were able to replace the hip/joint and femur.

And this is really where the fun starts. After being non weight-bearing for a few years, I am tasked with learning to walk again. This has been a very long and slow process, however, I am currently down to one crutch and I can walk about 150 steps on my own without the use of any aides! I continue to work hard in physical therapy and expect to be able to drive, walk, and get back to my “normal” life soon. Hopefully this year!

I tell you this story so you know that regardless of what you may be going through, and we all go through things in life – you can do it! You have to be resilient in your pursuit of healing. Stay positive in the darkest of days and know that tomorrow is a new day that can bring endless possibilities.

Thank you for reading my post! Please feel free to follow me so you can get updates and share your stories with me. We are all in this together!

A big thank you to my mentor, Mitch, who was kind enough to answer all of my questions, and who, despite being on a book deadline, said yes to helping me! This my friends, is what kindness is all about – helping a stranger and making a difference! You are simply the best, Mitch!

Until next time, be well and go out and do a random act of kindness!

Jewels

 

Introspection

Greetings, friends!

Here we are at the end of another year. Where has the time gone? Is it just me, or is time going faster? Slow it down!

As I reflect on this year, I am reminded of how blessed I am. While the year didn’t start out well with my hip dislocation, and there have been many changes that have taken place, in the end, growth and peace comes when we learn to adapt to changes. There have been more positive changes and that is what I tend to focus on.

Change makes people bend or break and we see the whole of a person. Anger and bitterness can bring out a different side of a person, and it is truly sad to witness. Other times, change brings out the best in a person and that is beautiful. We all know the saying; change is the only constant. Even when it can be difficult to accept change, we should learn to accept it and carry on with dignity and grace.

Speaking of change, my insurance has changed and I am forced to take some time off from physical therapy. This change doesn’t make me happy, however, I will continue to work hard on my own, using the tools that I have learned until I can return to PT in March. The “on my own” part is scary as there are things that I simply can’t do on my own, but I refuse to let that slow me down. I have worked too hard and have made so much progress that I will find ways to work around obstacles in my way.

My physical and occupational therapists are these kind and beautiful women and I am grateful they have become my friends. After working side by side for a year, they are my cheerleaders. They push me forward and keep me going.

Anita is this funny, kind, and caring physical therapist. She and I have had many heart to heart conversations and I always leave our conversations feeling better and more confident. Bless her for putting up with my endless questions – what about/how come/do you think…. Anita has worked so hard with me which is no easy task with a leg that at times will not cooperate and feels like it weighs a ton. You are the best, Anita! If you need a PT, she’s who you want in your corner.

Amy is an occupational therapist who is full of energy and life and is someone who always has a smile on her face. She is always thinking of different ways to motivate you so the task at hand seems fun. Lisa is an occupational therapist who is just the kindest soul. She has this quiet strength about her and she makes you feel confident and cared about. (As a side note, Amy and Lisa started Work Your Motor which is a program designed to assist people who have suffered a neurological disorder so they can continue therapy at home. http://www.workyourmotor.com). You should check out their site!

Thank you Anita, Amy and Lisa for all you do, each and every day for your patients. You make a huge difference in our lives!

                           

The awesome part of being forced to take time off from therapy is that I will be able to spend eight weeks with my daughter and granddaughter. There is nothing that makes me happier! Bring on the laughs, snuggles and love!!!

What is it about starting a new year that seems to rejuvenate our spirit? Is it the goals we set for the year? Is it the feeling of hope of what is yet to come? Is it simply getting out a new calendar with 365 days set before us?

With each new year, many people make resolutions, however, I do not as I feel I should be living my best life each day. Life is precious and I don’t want waste days. Do you make resolutions, and if so, what are they? C’mon, share with us!

Thanks for the lessons and the memories 2017. This has been a year of growth. For the first time in almost four years, I took first steps on my own, without my crutches; first time in almost four years that I had only ONE hospital stay; and the first time in almost four years where I am able to get into a compression garment! It has also been a year that has taught me that I need to be more compassionate and understanding. Not every story is what it appears to be. People make mistakes because we are human. The real lesson is in forgiveness. When we have the ability to forgive, it allows us to move forward. When we fall down, the only thing that matters is that we get back up and keep going.

 I look forward to seeing what I can accomplish in 2018. Hopefully I can spend more time with my family, stay healthy, be a little kinder, get a little stronger, help others when I am able, and inspire others.

Wishing you and yours a healthy and happy new year.

Until next time, be well and go out and do a random act of kindness.

Jewels

33 years cancer-free!!!

Being told you have Ewing’s Sarcoma bone cancer at 14 is devastating. Going through chemo and radiation isn’t for the faint of heart. Losing your hair is heartbreaking. Being sick to your stomach, dead tired, terrified, and feeling as though your world is coming to an end, really puts your life in perspective.

Having cancer sucks. Beating cancer ROCKS!! It changes you though. It makes you realize that each day is a gift. A gift to be cherished. Here’s the thing – we never know when our time will be up, so it is so important to live life. Be KIND, be COURAGEOUS, be STRONG, have HOPE, and INSPIRE others.

Learn from your mistakes, embrace the messiness, forgive, dance, sing, be silly, eat the cupcake (or two…), savor the moment. Travel, spend time with loved ones, and be present.

These past 4 years have reminded me of how lucky I am. Yes, my leg is fragile, and I have been through hell and back, however – I never give up. That’s the secret. NEVER GIVE UP. I went 30 years on this damaged leg before it broke and this wild journey started. Each day I get up and do the very best I can to get my life back on track.

If you are reading this and you are struggling, please know that you can make it through. Have faith and believe that you are strong enough to fight the battle. Life isn’t perfect and it will test us to the very core, and I am here to tell you – YOU CAN DO IT!

Some of the most amazing people I know have been through the toughest times and they shine after the storm. That is my wish for you. May you come out on the other side, stronger than before.

Life – is this amazing gift. As my daughter would say (and Mae West), we only live once, but if we do it right, once is all we need!

 (Fun fact – The yellow ribbon raises awareness for Sarcoma/bone cancer!)

Until next time, be well and go out and do a random act of kindness.

Jewels

 

Always be grateful!

….indeed it is!

Life isn’t always perfect but it sure is beautiful.

Life has been busy these last two months! No major updates to share. I am still working hard at physical therapy (obvi) and waiting for the custom compression garment to come in. The original one wasn’t made correctly so we had to send it back.

Let’s hope it comes back soon because my plastic surgeon is leaving Boston (gulp) so if this foot is going to open up, I would rather it happen BEFORE he leaves next month! However, I am going to be positive that the foot will be just fine and I can finally get out of this orthopedic boot.

Great news – I continue to make progress with physical therapy and my stubborn quad muscles are starting to wake up. Slowly. Very slowly, but I will take what I can get! Progress is progress, am I right?

Even more exciting, I have been able to spend time with my granddaughter, Olivia. It amazes me how quickly she is growing and learning. When I say she is smart, I mean she IS smart! And seriously, she is funny. Belly laughing funny. Liv reminds me that life is beautiful. It doesn’t matter if you are having good days or bad days, just be grateful to live this life.

I know we are getting into the holiday season where we are “reminded” to be thankful, but do we really need a holiday to remind us of that? Each day is a gift and I don’t know about you, but I am grateful for each and every day. The hard days make me stronger and the good days make me appreciate all that I have.

Some days I may struggle, but the struggle is part of my story.

What’s your story? What are you grateful for?

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

 

 

 

Life lessons

There have been many life lessons that I have learned during the last 3.6 years.

One very important life lesson: Every story is different. There isn’t a single person who can say they know what you are going through. Doesn’t it annoy you when you are sharing your story and someone says, “I know EXACTLY what you are going through.” No you don’t, and here’s why.

I am the only person who knows the feeling I get in my chest when I go for an appointment and it is overwhelming. Overwhelming because there are so many factors when trying to figure out what to do to get me where I need to be. Where I want to be.

How can I go from having my leg wrapped every single day in layers of foam and short stretched bandages, to being in a compression garment to control the swelling which will allow me to get back into a shoe? It sounds easy, however, I am such a “unique” case, that the answer is complicated. And just for the record – can we find a new word to describe me and my situation? “Unique” is getting old.

One person may think a custom garment will work if it is lined in silk and has silver in it, and then another person will disagree. What do you do? One person may think a new custom carbon fiber brace will work which will allow me to get out of the orthopedic boot and into a sneaker. Another person will disagree. What do you do?

Let’s not forget one very important piece of this – I am on a hip restriction for life which presents many limitations. How will I be able to get these compression garments on by myself? They are hard enough to put on for a person without any restrictions. The “easy” answer seems to be that “someone” can simply help me. I didn’t realize that the magic fairy will deliver that “someone” to me. It isn’t easy to find someone to swing by each day and do these things.

The list goes on but who really needs a laundry list of issues? The road has been long and I put on my big girl pants each and every day and give it my all. Some days the smiles come easy and other days the tears replace the smiles.

Another life lesson I have learned: At times, I walk the journey alone. Especially in my heart and soul. My family, friends, medical professionals, et cetera, have been wonderful. Amazing, really. But I am the only person who feels the stress and the overwhelming feeling of “will I ever get my life back?”

I do know the only way to figure out if something will work is to try it. That can be terrifying when there is so much to worry about. The darn what ifs can make a girl stressed out! “What if my foot opens up again?” “What if I need another free flap surgery?” “What if I can never drive, work, be “normal” again?” It is easy to get up one day and decide, I am not going to stress or worry about x,y, or z and then the next day the worry and fear set in. It’s just a part of life.

Every story is different. No one person knows exactly what you are going through. One day may be tough but hopefully the following day will be better. Trust me friends, my journey started with a limb salvage situation and I am so thankful that we saved this leg and foot. There are truly no words to express my deep gratitude for what my amazing surgical team has been able to do. But! That doesn’t mean the journey has been easy.

Every day is not rainbows and butterflies. Sometimes it is okay to say, it sucks. It hurts. I am so confused. I want to move forward but I am stuck in limbo.

One of the most important life lessons: NEVER GIVE UP. Today may have been overwhelming, but tomorrow will be better. We are going to figure these things out. Trial and error. Tears and smiles.

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

It’s complicated!

Have you ever been super excited for something and you wait and wait and then the time comes and, yeah, it doesn’t go as planned? It’s kind of a bummer, right?!

I headed to Boston on Friday so I could try on several compression garments with the hope of getting out of this orthopedic boot and into a sneaker. A SNEAKER! I haven’t worn a shoe on this foot in 3.5 years. Can you imagine?

So at the crack of dawn, off we went. I was hopeful that things would go well and was prepared for any bumps in the road, such as the foot opening up again. My lymphedema therapist allowed me to bring several different samples of compression garments that may possibly work.

It is a rather complicated situation. My lymphatic system has been compromised and we have worked very hard to bring the swelling down and maintain that. I had 750ml of fluid from the knee down, and now it is controlled and that fluid is gone! In order to manage the lymphedema, I go to therapy a few times a week and my foot is wrapped every single day. And when I say wrapped, there are several layers of foam and short stretch compression bandages to control the swelling.

With these wraps, I cannot fit into a shoe/sneaker. So the idea is to get out of the wraps and into a compression sock/garment that will allow me to fit into a shoe. The garment will control the swelling while being less bulky.

In addition, I will transition from my orthopedic boot and get back into my carbon AFO brace. That is, if this type of brace will still work with my delicate foot. From the infection I had in my foot, it left the bone and Achilles tendon exposed for 9 months, and the numerous surgeries to heal that area has left it very fragile.

To add to this, since my new hip dislocated, I am at a 60 degree hip restriction for life. Yes, folks, for life. Do you see where this is going? There are so many moving parts! The compression garments need to ensure that there is no “pulling” or “shearing” in the foot area so it doesn’t open up that old wound. The garment also needs to be something that I can get on and off by myself which is no easy task with my hip restriction.

My carbon AFO needs to be able to support my drop foot but it can’t be to snug around the back of my foot, because if it is, it will open that fragile skin.  We won’t know if it will work until I can actually put it on.

The folks in Boston did not approve of the compression garments that I had with me. They believe I need to have a custom garment made so I wasn’t even allowed to try them on!

So the plan is to continue with the wrapping and orthopedic boot for now. I see my orthopedic surgeon in 3 weeks and we hope that someone can be there to see about having the custom garment produced.

We all agree that it is better to do this right the first time, even if that means I need to wait a little while longer. It’s been 3.5 years – a few more weeks and/or months isn’t that bad.

It’s complicated but progress is being made and that is a beautiful thing!

For now, I will continue to kick butt in physical therapy! My hamstring muscles are stronger, which is awesome. My quad muscles need a LOT of work and it is a struggle! While I still can’t raise my leg on my own, I practice every single day and I am confident that I will improve. The flexion in my knee needs to improve greatly and we continue to work on that as well. “Normal” extension in the knee is 140 degree flexion, and I am currently at 40 degrees. So there is plenty of work to do.

There are days where it feels overwhelming, but as long as I see progress, I feel encouraged. I will NOT be defeated!!

If you are out there reading this and have similar struggles, hang in there!

Until next time, be well and go out and do a random act of kindness.

Jewels