Category: Charcot Foot

Charcot Part 2

Happy Friday! I am currently enjoying some quiet time. I took today off of work. In later posts I will share more about myself. I am a full time Manager working in the healthcare industry. I love my job and I look forward to quiet moments like this. I ran some errands this morning just taking my time instead of rushing around like most days. We all need that quiet time now and then. Hope you can all enjoy a day like this now and again too.

I am mostly a joyous and positive person. I feel fortunate to have been blessed with this personality. As I shared though in my last post, I went through significant depression during my active Charcot foot phase.

The first phase of this for me was purely about disbelief. I had been through a lot of health issues already. I had type 2 diabetes, high blood pressure, asthma, and I had fertility issues. I didn’t believe that one more thing could happen to me. I was an active woman with a full time management job, a young son, and I loved my evening walks. Now I was on bedrest, off of work, using a knee scooter, and everything had changed. My foot doctor was good to encourage me just to get through one day at a time, but I knew my life was changing forever.

I can look back now and smile about some of the things I went through. I can only do this now though because I’ve had two years to put that phase behind me.

After I was diagnosed, my doctor gave me the choice of knee scooter or wheelchair. I ordered a knee scooter online and when it was delivered I had a hard time putting it together. My husband quickly offered to help and so he and my son assembled it. I had been on it for no more than two minutes when I turned in my kitchen and fell to the floor, scooter on top of me, legs underneath me. I just sat there and cried! I must have been there at least 5 to 10 minutes just crying. I needed to do that because I had not cried yet. Turns out the scooter was assembled backwards and the anti-tip handlebars were on wrong. Lesson learned….

We had just brought home a 2 pound teacup Yorkie who needed my love and attention. Figuring out how to take her outside was challenging. We had an older dog that was already trained so she was easy. I do credit my dogs though for helping my sad times.

Every day I had at least one crying outburst about the change in my life. My foot was only mildly painful so I was not dealing with that. It was the sadness about not knowing about the future and walking again. I called my sister several times a week in tears. I had gone from a strong confident woman to a puddle of tears. I was short with my husband and son at times from frustration with everything. It was a hot summer and I could not take my boot off except for a few minutes each day. I longed for a swim or stroll in the summer breeze.

I had so much help though and for that I am truly grateful. My son started doing his own laundry, my husband helped as much as he could, my sister came on weekends and cooked for me. She and her kids entertained me on weekends with fun games. They took my son to movies. We hired a housekeeper once to twice a month. I started ordering groceries on line for delivery. My co-workers and staff brought me a basket of goodies and made me dinners! After a few months I was allowed to go out with my knee scooter and occasionally got out of the house for a dinner or two. These moments kept me going.

I was so sad though, I even stopped caring about myself after a while. I remember one moment at my lowest point. I was playing video games, had not showered in several days, I had greasy hair, smelled like cheese and butter, and then my door bell rang. Two visitors wanted to know if I knew Jesus. I am sure they went home and prayed for me after seeing me.

In those moments I had a hard time imagining finding an new life with this diagnosis. My family including my sister, husband, and extended family all hung in there with me and kept encouraging me. It was my sister and husband who told me I had to figure this out and get back to me. I admit it took me a long time, but slowly I made baby steps to getting a life back. I admit I had grown a little selfish.

After I could put a little weight on my foot and go back to work with my knee scooter, I got a lot of confidence back. I started going to the movies again, to the mall, getting out and about. I still had to be a mom to my young son and figure out how to do things with him. A year after I started walking again I went to Disneyland with my family and rented an electric scooter. I rode all of the rides over and over. I realized I could live like this. It’s not easy, but I longed for life again.

I encourage anyone going through something similar to hold onto hopes and dreams. Please talk to someone about your feelings and get help if you need it. My depression was temporary, but it taught me what other people feel on a regular basis. I also found a quote from Stephen Hawking, “Remember to look up at the stars and not down at your feet”. I realized it was okay to feel sad about what I was going through and at the same time realize I was not alone. Many people were also going through far worse. I had significant compassion for them in those moments.

I will share more in my next blog post about what life is like now with Charcot. I still work full time and find activities I can do. For some people with Charcot the road is much longer. I participate in a support group that is fabulous. I saw my foot doctor yesterday, my foot is still stable, and I follow all of his instructions. I was never what you would call a “good patient” before, however now I sure am. I posted a picture here of me on my Knee Scooter Thanksgiving of 2017. Until next time I wish you all well. I share these vulnerable moments with you to encourage you and know you are not alone. Best wishes.

Mandy

Life with Charcot Foot

Hello readers. Thank you for supporting my blog and taking time to read. I hope you are all doing well today and finding some of the information helpful. Please feel free to message me on Facebook or leave a comment here if you have specific questions. I’m happy to help.

As I shared in my post the other night I want to talk more about my Peripheral Neuropathy and Charcot foot. Although I’m a registered nurse by training, I am going to talk about this from my perspective and not a medical lingo perspective.

I will talk more in a later post about my journey with type 2 diabetes. I was diagnosed though in my early 20’s. For many years I did have good control which help prolong any complications. I developed peripheral neuropathy though sometime in my early 30’s. This is a condition in which I have burning, numbness, and less feeling in both of my feet. I got a wound from a bad shoe in my mid 30’s that took almost a year to heal. I went for many years though without further complication. I was about 41 when I developed a bad wound on my big toe on my left foot and almost lost my toe. I credit two doctors at my physician’s office for saving that toe. They worked hard to save that toe. I went for daily dressing changes for a month and then twice weekly for another month and then weekly for months. It finally healed although I had cellulitis in it several times.

In early 2017 I noticed my left toe was shaped funny and my entire foot was swollen, hot, and red. You would think by now I was used to doctors, but I was scared and ignored it for a month or two. In March of 2017 I did go to a physician who sent me to the Emergency Room. I was so nervous and scared that this was my time to lose that toe. I decided I had to address it though and would deal with losing my toe if I needed to. I went in though and they diagnosed me with cellulitis again. Long story short, I was diagnosed with cellulitis a few times with no change in any symptoms. In May of 2017, my regular physician sent me to a Podiatrist who right away told me it was Charcot foot. I was diagnosed on May 12, 2017 and I will never forget that day because it changed my life.

In a nutshell, I had broken my left big toe and because I had less feeling did not have as much pain as a regular person. The other doctors thought it was cellulitis, but it was Charcot Foot. Walking on an injured toe for months caused the Charcot Foot. This is basically when the bones in your foot heat up causing swelling and warmth. Your bones then begin to melt if you will. This is the active phase and in my case treatment was strict non weight bearing until the active phase was over. I was placed on bed rest with a strict order to not put any weight on that left foot. I had a soft boot that I wore 24/7 during that phase. I took three months off of work to heal. I used a knee scooter to get around my house for those first few months.

When the active phase was over and my bones were stable, my foot shape was changed forever. In September of 2017, I was given a CROW boot to wear on my left foot. I was allowed to return to work in late August with my knee scooter. I did not walk again until late December and was very limited at first. In January of 2018 I did get orthotic shoes that I wear every day.

One of my favorite things in life was wearing my sandals and going barefoot. I was no longer allowed to do this. My left foot is called a rocker bottom because when my bones melted and stabilized, the arch of my foot has broken down. My foot bones are now much closer to the bottom of my foot and only have a bit of padding on them. Walking barefoot is actually painful. I have much less balance than I used to as well. I am limited in the number of steps I take per day. When I go long distance like to an amusement park or the Zoo, I use an electric scooter.

I will share more in my next post about this difficult time. I had some very dark times during this period. I will share what I went through and how my family helped me find life and hope again. I will also share how this led me to the decision to have bariatric surgery. With Charcot foot my goal in having bariatric surgery was to improve my diabetic control, maintain my neuropathy and not have it worsen, and get some weight off my feet. I also joined a Facebook support group which helped tremendously. I have moved from the dark back to the light. It was not an easy journey though.

My goal in this blog is to help others going through similar journeys as well as inform those who might be headed in this direction. Until next time, I wish you all well.

Mandy