My World Changed

27 Jun

I had gone from ‘I love shoes’ to the ‘Flip Flop Lady’

The thought of simply going back to the way things were is no longer an option. I was no stranger to pain, that was pretty evident as I had cortisone shots in my spine several times a year just so I could stay working…thanks to an amazing pain control Dr. It was something I had struggled with for years but kept it pretty well hidden for a long time. If anyone has dealt with serious back issues you know this struggle. I was dealing it with it anyway I could. A single Mom who needed to work so you just did what you had to do. No, pain was no stranger to me.


But this…what ever this was that was happening to me so suddenly was like no other pain I had endured for such long periods. It was unrelenting and the hardest part was not knowing what was going on. I clearly remember even now, 15 years later the little dot that had formed just below my right ankle. How could a little pink dot hurt so bad? I could barely stand for more than a few hours at a time and I was a hair stylist so as you can imagine it was very difficult.


When I finally couldn’t stand the pain any longer I had to cancel the remaining clients that day and go to the closest clinic for some help. That little pink dot that looked like something had bitten me was now getting bigger and the pain increasing. The Dr. was flustered as she had not seen anything quite like this before and a flesh-eating disease did come into the conversation. We made the decision to wait until Monday when I could see my regular physician and she was offering to send some info to him suggesting getting some tests done.


Actually it was quite the surprise to actually see her come into my Dr.’s office while I was there. She was genuinely concerned about me and wanted to see how I was doing a few days later. The pain was increasing as was the size of this dot. None of it made sense, and it continued to spiral out of control both with pain and in size.


I kept trying to work as long as possible and waited to see a surgeon and have a few more tests done at the hospital. It was getting so difficult because now it was a kind of pain that didn’t stop and raged on all night. Even water touching my skin brought tears to my eyes. I felt so helpless and this dot was no longer a dot but a huge gaping hole in the side of my foot. No bleeding, as you would expect from a wound. Just pain and a gaping hole, which was now a concern for infection. And off to wound care I went…twice a week.

First Surgery

Yes, let’s just say this did not go as planned. I was examined by a surgeon and his assistant who thought they had a good idea of what could be going on, so surgery was set for the next week and if all went well I would be able to return to work in a week or so. NOT. It didn’t happen. Things did not get better they got worse. It all started with that little pink dot in August. It was now Dec. and getting anything at all on my foot was almost impossible. What they thought it was should not be causing this much pain.


The first time they removed the bandages after surgery to soak my foot in a healing type bath my niece and my son were with me. One said, O.M.G that looks like a bullet hole from a large rifle and the other commented it looked like a very large animal took a bite out of my foot! It was large. The problem was the pain would not go away and the hole would not get smaller and no surprise to you I am sure, work was out of the question.

Pain and the risk of infection were huge factors. As a hair stylist and working around hair and chemicals all day was not the ideal situation with an open wound nor was wearing flip flops to work. Against the rules of the house. I couldn’t even drive as the movement of my right foot up and down on the pedal was excruciating.

Fast Forward

Another failed surgery a few months later, and then a year later a third surgery was done which was the first time in that year that I was pain free. I was ecstatic. It was temporary but I was happy for the time I had. More than happy actually. I still had a slight opening on my foot but for the most part it was closed. They strongly encouraged me NOT to return to a job that required me to be standing for long periods at a time. The same for sitting for long periods. And no more of my faves like below for many years to come if ever again. I loved dressing up and loved loved loved my shoes! So ironic in so many ways.


Like I said it was a temporary solution that I was grateful for and I can tell you I was certainly never forgotten by any of the Doctors who were seeing me. There were many trips to larger cities for evaluations and testing and they all came up with the same incorrect diagnosis and by this time both feet were involved and now in more than one area. (One foot was the top of my foot and the original wound now had both ankles involved.)

To show you what was happening would require a warning post that what you are about to see may make you nauseous or cringe so I won’t do that at this point. What I can tell you is that the bandages had to be changed every other day, and the only touching was from the saline solution to keep things clean by the nurses in wound care. When your nurses are close to tears because they can see and feel your agony you know beyond a shadow of a doubt it is excruciating.

Wearing any footwear was near impossible and sleeping was a nightmare as anything, yes, even a blanket touching me was too much to bear. It was a battle that would last another 2 years before seeing any relief and finally getting the correct diagnosis.

Imagine a Life Without Pain

Can you imagine, or maybe you have done this as well, burst into tears sobbing over a silly commercial with the cutest kitty or puppy ever!! I mean seriously this was happening. I was afraid to ask for medication to help me with my sadness and feelings of helplessness. Fear and shame go hand in hand with depression. And besides when I wasn’t in remission I was taking all kinds of pills to try and help and very strong medications for pain 9 the kind you have to sign on the dotted line to get) and adding more just wasn’t where I wanted to go.

There were many times where I almost gave up.


I remember very vividly saying to God in one of our many conversations…well more like me pleading and crying and then pulling out the big guns with the…‘if you can’t help me and find a better way then fine! Take me out of here because I can’t do this anymore. I am done!’


Shortly after this one particular night I found myself begging my Dr. to send me to a surgeon. I had no idea why I was asking this but he agreed and an appointment was set up. I have to tell you here that I had seen many many Doctors. and had seen surgeons and specialists but nobody could figure it out.

The Exception


This one surgeon, a nice South African Dr., examined me and then clearly stated that he was sure I had been misdiagnosed. He said he would have to do a live biopsy to be sure and he would have to send it away to the mayo clinic which could take up to 8-12 weeks before we would hear. We booked the biopsy to be done on the following Friday.

Well, what happened was this fast forward thinking General Surgeon was the one who got it right over all the specialists I had seen over those 7 years!!! It was a good news/bad news result that came back.


Good news was we now knew what it was for sure and the bad news, it was/is very rare with only 10,000 known cases worldwide and no cure. There however were some medications that had been tried and had helped others. So we started on one. On my last visit to the home care nurses who were helping me with dressings and just keeping an eye on things for the Dr. were almost in tears as they were finally able to release me. I was making so much progress I didn’t have to come back.


This disease is extremely painful and attacks the feet. It is called Livedoid Vasculopathy. I was told the only way to be 100% sure of the correct diagnosis was with a live biopsy. Livedoid vasculopathy (LV), or livedoid vasculitis, is a hyalinizing vascular disease characterized by thrombosis and ulceration of the lower extremities. I could show you pictures but for some, it is very difficult to look at, so I have chosen not to do that. If you are familiar with this you know it can be hard for anyone to see and if you have anything that sounds similar please feel free to reach out to me. I will be more than happy to offer any help or encouragement you may need. I am easily only an email or a comment away.

As I write this today, I am in remission again and my flare ups are less. And I think now knowing what this is and what I need to be aware of is especially helpful. I believe when we know what we are dealing with it makes all the difference in how we live going forward.

I also know that Stress seems to be a trigger for me but since finding my amazing supplements I am getting closer and closer to dealing with everyday stress and depression that can come along with chronic illness much better.

*footnote*

Did you know that increased stress levels can become toxic, you can’t sleep and your whole system buckles from the strain. In this world we live in today, with so much happening with the COVID pandemic, avoiding stress is nearly impossible. Gaining power over it is not. In fact one of the sanest things you could do to help yourself is to feed your body some whole goodness. Sleep, Gut Health and nootropics for those moodier days. Gotcha covered! Have a look…

and that’s a wrap…

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