Losing My Ability To Walk

 

Sunday, January 15th, 2023, was a day I remember. Thankfully, photographs I've taken over the past years, have helped me remember days like this. 

Visiting family in the St. Louis area to celebrate my 42nd birthday. A weekend of joy, and also a weekend of pain and tears. However before I discuss my day in what detail I remember, I wish to go back in time a little bit further. 

It was the year of 2006, I was preparing to go into lumbar spinal surgery and hopeful it would help with the lumbar disc degeneration, pain, and other uncomfortable difficulties. At the time this was not something I decided on lightly, and I took a lot of faith and trust into the neurosurgeon I was a patient with at the time. Of course, years later I would learn that not only did this surgeon operate on a patient that caused a malpractice law suit to arise, the patient died. Upon further research, information that was not available years prior, years of malpractice suits from multiple patients. I wish I had known this before my surgery, however we can only do what we can with the information we have at the time. I decided to proceed forward with the same surgeon who I worked with for my lumbar micro surgery, years prior in 2003. 

 Here I am, photo post-surgery, out to celebrate birthdays with my family. I don't really remember this moment, was a family birthday celebration at one of the casinos in the St. Louis or St. Charles, Missouri, areas; I remember that much. I was in a wheelchair, so that meant I still wasn't walking much after surgery. And my husband, mother, brother, and grandmother, were with me. I assume either my brother's birthday around mid-April, or a joint birthday celebration for my mother and grandmother, around the end of April to the beginning of May. Could have also been a mother's day celebration... Anyhow, regardless, I remember this person, she went through a lot and it was a very rough transition, from being able to walk, to learning how to walk all over again. I took it hard, gained a lot of weight during my snail's-pace recovery, depression that I didn't realize I had until my awakening over a year later, when I decided to change my life, begin to eat differently and more mindfully. It would then be about six months later that I decided to become a vegetarian, best decision I made and I still feel to this day that because of these changes, I saved my life. 

I've been writing this blog post for days now, I wanted to put everything in chronological order, however I think I may jump a little back and forth in time. One year ago in early April 2022, I remember attempting to walk with my family at the baseball game we attended in Kansas City. I finally, after about six months of wait with insurance, had my replacement walking brace; however it wasn't doing a good job of holding my leg in a good position, if felt like I was walking on a rolled angle. I felt frustrated and so worried. The year beforehand being postpartum after the loss of our daughter, Noelle, was difficult to recover from.

Unsure if you can see the way my ankle was rolling that day in April. I remember visiting Hanger Orthopedics the prior fall, when I received a script order to get a new brace because my ankle wasn't doing well, so we were going to get something that still allowed movement, however stronger, with hopes that it would support my drop foot. I had to wait about six months before insurance finally approved the brace, and once received it did not help. I remember having to exchange it out within the next week because it was creating more problems than helping, my replacement after that brace, thicker, stronger, helped me for as long as it could.

Jumping back to late March 2022, when I received my new brace to help provide more support, although it did not work very well or too long; plus it cut into my shoe. I've not had very much luck with braces and shoes, eventually all braces cut into my shoes. 

I want to jump back in time just a little bit more, first my leg surgery, tendon lengthening, ankle spur removal, removal of floating tissue, straightened my toes too during that time. Going back to December of 2016, and then a few photographs from early 2017. 

If you are uncomfortable with looking at surgical photos, feet, stitches, feel free to jump ahead. It's nothing too bothersome, I just wanted to put a word of caution out there. 

This first photo is after my surgical cast and wrapping came off of my foot and my leg, December 2016. I remember feeling nervous, hopeful that the surgery was successful in helping the restricted, shortening tendon, and lengthening it mid and higher up. To this day it still aches in the back of my ankle, the doctor who I worked with did not want to lengthen it that low, just in case it caused too much allowance in movement therefore creating more problems, than helping. 

You can see that there was considerable bruising around each of the incisions. I had three in total, two of my foot near my ankle, and one larger on my upper leg.

I have now had my share of wearing casts on my leg, and a variety of colors too. I felt I wanted to be sure that I had something that brought me joy. It was by January 2017, that I finally was able to use a walking boot again, and then finally, by February, able to use my regular walking brace and shoe again. 

I have also used a variety of medical aids to help me, wheelchair, walker, knee scooter, walking braces of all varieties of materials, and soon I will have another new brace; however now I am getting ahead of myself...

I wish that my life had been easier, however, it hasn't. There are so many expressions I used to use all the time, sometimes I still unintentionally do. 

What doesn't kill us makes us stronger... Just terrible. After you have lost as much as I have, early child losses, half term and full term losses, losses of multiple family and friends. You begin to feel like that expression just rubs you the wrong way. 

Sometimes I wonder why my life has been this roller coaster of grief and loss. And then I think back to everything I've experienced, what I've learned, what I've grown from, what has defined who I am today. Even through the heartbreak, I would not be who am I today without having had every little part of it. Whatever is ahead of me, I have arrived here because of the person I was, and what I've learned along the way. 

I suppose it is time to jump ahead. LONG overdue. 

Two years ago I was recovering, postpartum, after the loss of my baby girl, my miracle, our beautiful daughter, Noelle Alberta Hope. Weak from having Covid during the second trimester of my pregnancy, still never fully recovered. 

I remember how I slept some nights during my last full term pregnancy, I still question myself, did I directly cause my now current complications? After all, the body is more connected than we realize. It is my regret, perhaps, that causes what me to question my past self.

One year ago in 2022, I was not in a great place, already beginning to have multiple problems with my ankle. I could be standing in front of the sink and look down at my feet, without realizing it my ankle was rolled on it's side, still in my right shoe. That is when I knew I needed to expedite my efforts with making sure I could still continue to walk for as long as possible. 

Of course how I feel stems from many things. The one reason that stands out in my mind, is my mother. Back in 2015, after my son's 1st birthday, my mother visited the emergency room, twice, within a short time-frame of one another. Strokes and seizures can take a great toll on our body, our mind, and our hearts. It can shatter our hopes and our dreams, while many push through, others simply give up, and oftentimes without even realizing they are truly giving up at all. Well intention may be, however actions speak louder than words. I have come to the thought that sometimes we need to keep our motivations and what inspires us, to ourselves, as speaking about it out loud to others, we may not actually achieve what we have put our minds to. You can come to your own decision yourself of course, on what works best for you. 
 

I have no idea what the future holds for me, however I can tell you I have been having increased difficulties with my drop foot for a long time now, all the while, it's been a very short amount of years.

The photo shared here with what looks like a cast mold, is exactly that. A cast mold of my right foot, ankle, and part of my calf (or whatever is left of my right calf that is, atrophy is a harsh mistress if you are unable to use the muscles in your body, and causes more problems than benefits). This cast mold is my last attempt at being able to stabilize my ankle, my last attempt at holding onto the ability to walk. It was made to create what is called an Arizona Brace, custom made to fit me, I should have it within a few weeks. The two braces beside it, black with laces, and tan with velcro, were two options I had to choose from. I opted for laces for the best stability I could have for myself. Perhaps in another five years, if my ankle holds out that long, I can opt for the other option. 

The past few months I have been suffering with physical pains, for years I have been having multiple complications. This blog post has become rather long, so I will save that post for another day. Instead I'll share facts, data, photographs... Perhaps then, you may begin to understand the depths of what I will call my physical suffering. This all has helped me cherish, even more, what I have while I have it. 

Back to January 15th... Visiting some of the family in the St. Louis area, to celebrate my birthday, it was not a planned trip and more spontaneous. Being that I didn't make hotel reservations until almost the night beforehand. I had been having ankle spasms with horrifying pain for months. That past month I also was sorting through a lot of the house, de-cluttering, organizing, doing what I could when I was able. Used an ASO, alongside with my AFO brace, to help keep my ankle immobilized. 

There my family was, the three of us, at the Art Museum in Forest Park, wonderful place. I had problems taking a few steps up the front stairs, however I thought it was just the feeling of being tired. I had no idea what awaited me... I was walking around the art museum down the main hall and towards the first gallery, I had to stop a few times due to the pain in my inner ankle. Finally at the first gallery, and things went from not great to feeling like maybe I should get a wheelchair, AND FAST!!

We went to the St. Louis Zoo after attempts to walk around the Art Museum, I did finally get to have that wheelchair, complimentary mind you. Did you know a lot of places will make you pay to rent a wheelchair to enjoy their attraction? I know, I understand the reasons why however it feels absolutely ridiculous. 

I regained my composure and tried to walk around the zoo with my family, however I had to stop multiple times, take weight off of my ankle, the pain was just too much. 

I realized just now that my ankle CT was January 25th. No wonder weeks later insurance did not want to approve another ankle CT after my life felt like it was turned upside-down. 

Are you able to see this photo to the right? This was from this past month. Do you see my right ankle? It pulls to the right like it's completely on it's side. It feels like I'm walking on the side of my foot all the time, THIS is what it looks like all of the time these days. 

The following is a list of what my ankle CT found, and I plan to share a few X-ray photographs as well (that I was allowed to capture at the time with permission). I couldn't take photos of the CT however I was able to see the images taken from my X-rays, months ago in 2022. 

My right ankle is not in the position it used to be in. 

Turned, compressed, the bones pushed in all sorts of areas...

You can see the swelling in my right ankle.

Even my big toe is not in the proper alignment anymore.

In my right ankle, that is my drop foot and nerve damaged side, I have: 

• severe advanced ankle and subtalar joint arthritis,
• widening of the medial and lateral tibiotalar joint,
• loose bodies noted around the ankle joint (measuring slightly greater than 1 cm anteriorly),
• prominent cyst like areas in the distal tip of the medial malleolus consistent with chronic repetitive trauma,
• prominent osseous excrescences noted along the plantar medial plantar lateral aspect,
• ankle prominent cyst like areas in the distal medial tibia, (consistent with chronic repetitive trauma),
• metatarsus primus varus, hallux valgus deformity,
• fatty muscles of the abductor digiti minimi muscle,
• moderate to severe degenerative changes of the ankle joint,
• and evidence of a chronic baxter's neuropathy with fatty muscle atrophy of the abductor digiti minimi muscle.

Basically, my ankle is out of alignment, has degeneration and/or compression of multiple areas, spurs, and riddled with moderate to severe arthritis, as well as the laundry list of listed ailments above. The seriousness of the reality of my complications has been hard to take in. Those who know me and have seen me more often the past six months, know how hard this season of grief and loss, has been for me. And it turns out all medication is not created equal, as the second I added back in 2022, led me to where I am today. More weakness, appetite was largely compromised, I still have occasional vision and nerve problems that are more so than normal, due to this medication I discontinued back in January. 

The photos you'll see following this paragraph will show you a right ankle that almost looks broken, because in a way, it feels like it is. My heart aches, I have no idea how much longer I will be able to walk. That alone, aches and breaks my heart, and has been difficult to accept, even though I have accepted this is out of my control, doesn't mean I can not grief this loss, the loss of mobility. 

My ankle just hangs to the inside so terribly now.

Even less ability than I had one month ago.

Bracing is the only way I have been able to walk.

This is my life right now...

Photos from one of my visits to the foot doctor...

And a few other photos from another visit...

I am not improving.

This is my life right now...

My ankle turning in like that does not look normal, AT ALL!!

So again, this is my life now...

Using canes... Walkers...

Even using a variety of walkers, and in multiple areas in the house.

Fortunately all my thrifting (some may recall that I've been doing a bit of that lately), has helped me purchase some used walkers, and even a knee scooter (if I am able to fix it up that is).

I never imagined at age 42, this would be my life. Waiting... Waiting with hope, that my body allows me to continue to walk as long as possible. Even using a walker has been challenging, depression and anxiety, among the multiple other challenges, has been difficult to manage at times. Last night, I realized it was my breaking point. A panic attack worse than anything other I've had in my life. The last time I had a panic attack like this was about six months ago. I've not been talking about my hardships and only reaching out to some for help. I knew after my panic attack, once I was able to come into focus again, that I need to talk about this. I have no idea why I've internalized all of this, except for the fact that many others in my life right now are also having their own challenges and hardships. I don't want to take away the focus from them. I also want some of that focus too, I am not doing well, and others are beginning to notice this too, like those in my church grief group last night.

This should not be my reality. So much more I want to talk about, believe me, there is so much more happening these days, and now that I have written this I feel like I can open up and talk about it.

Life has not been easy.

Oh look.... a smile.

A few photographs I took of myself earlier today...

Just feels so forced in this moment. 

The reality of talking about my current circumstances, is hard.

Ok, this is more accurate.

A slight, relaxed expression, tired eyes, a little makeup, curly hair down to my shoulders, a little lip color too (although it was wearing off a little at the point I took these photographs). 

How am I doing or feeling these days??

NOT great. I'm "here", just doing what I can to get by...

Ok, this photo, no teeth-smile, no grin, THIS is more accurate, as to what I've been feeling while watching my body fall apart, the doctors still with no idea what is causing the constant complications.

And the photograph after this, tears in my eyes and down my cheeks, mascara smudged, stuffy nose after a long while of crying, and feeling so empty and sad...

Since my emotions are not in the drivers seat any longer, I can see and think more clearly, even if my memory is in terrible shape. And when I feel deeply now, I cry with an ache like no other felt before, broken heart, a feeling that leaves me in surprise each time. To the capacity to feel this type of pain, I had no idea. I tend to feel like I repeat myself these days, even harder to remember, decades of my life just gone... Even remembering moment to moment hasn't been easy. Certainly there has to be connections to why this is all happening, after all, the body is more connected than we realize.

Just one week ago, this was my reality. After getting into the car, after attending my child's 2nd grade performance (which was fantastic by the way, love the Beatles!); something happened to my right ankle as I was getting into the car. It felt like something popped, tore, ripped apart, and the pain was unimaginable. I could barely walk into the house, had to have a friend take my child to school in the morning because I couldn't drive. Thought I had broken or fractured my ankle somehow.

The doctor's office said my follow up CT had been denied, again, even after the pier to pier phone call. I was told I have to wait SIX weeks with conservative treatment, before insurance will approve another CT. Problem is, my ankle is worsening every day. This Arizona Brace can not arrive any sooner for ankle stabilization, and I run risk every time I try to put weight on my ankle without the additional support. I've been in my walking boot again for one week. 

Learned this past Monday that the X-rays showed nothing fractured, however they would try to talk to insurance and see if we could get the CT approved, there could be micro-fractures... I am unable to know of this, at all, until insurance approves or the time is allowed to pass. From my understanding it doesn't matter if things get worse for me, that insurance will deny regardless because they already have, twice... 

As you can see I have a lot on my heart right now.

Despite this lengthy blog post, that has taken me multiple days this week to write, I somehow still am holding onto hope. With hope for the future and realistic as to what may be in my future. I am preparing myself for the unknown, and wish for answers. 

Hope. 

Oh how I pray this year maintains my spirit of hope. 

Life is so very negative at times.

I do not wish to loose the one thing that has kept me going for decades.

May you have a peaceful rest of your day, and a gentle weekend. Remember to be kind to those around you, as you have no idea what they are experiencing in their lives. And behind those smiling shared photos, may be an individual with a lot on their heart. Kindness goes a long way.

Take care of yourself, and Namaste.

Thank you for your support.