Some days, I’m just done.

I don’t want my blog to become a place where I only whine about medical woes, but I also want it to be a very real place where I convey what living with a chronic illness looks like in a very raw way. So, here goes.

This winter has been an emotional one. I’ve accomplished many things professionally that I am very proud of and worked very hard to obtain. But I’ve also been battling more with my physical health than I am willing to admit. I attempt to do everything that I can to shield my loved ones from the repercussions of living with a chronic illness, because it only upsets them.

In the past three months, I have had the flu twice, and I’m currently experiencing a cold and a flare that I would rather not deal with. As someone who prides herself on being professional and compartmentalizing her life, I am struggling with the fact that I had to take today off work to try to get over the cold that I currently have and allow this flare to start subsiding. 

For the immediate future, I am upping my Prednisone (something that I loathe having to do) and attempting to de-stress and rest.

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Shoes

Some people will think this post is vain, selfish, or even petty. Others, who perhaps have walked down a similar road, will understand the intentions and emotions behind it.

 

In 2008, I was a college sophomore just like every other college sophomore. Any of my physical symptoms of illness could be explained by the typical college life: not enough sleep, poor eating habits, and stress. However, over the course of the next five years, my life would change drastically and rapidly.

There are a lot of sacrifices that I made in order to survive. I didn’t choose Behcet’s, nor did I make choices that caused it. But, because of this illness, I have been thrust into a world of hospitals, surgeries, injections, and symptoms. I have re-arranged my life to accommodate medications, recovery periods, and physical therapy. I have re-arranged my wardrobe to hide scars. I have re-arranged my hopes and dreams for the future to accept a more attainable reality.

But I never had to give up my shoes. My shoes that I wore were beautiful. They were the thing I treated myself to. They were arguably the most feminine thing about me. I loved heels, especially designer heels. From the time I was a pre-teen, my dad had always bought me special pairs of shoes that were “loud” and made a statement. I was able to walk, and walk well, in 4″ heels, and more conservative heels were a staple in my wardrobe.

When I had my first surgery on my leg in 2008, my aunt (who is also a physical therapist) promised me I would be able to wear my heels again. When I had the next surgery in 2010, she again promised me that I would be able to wear my heels. After the fourth surgery, I was ready to just be able to walk without a walker.

Recently, I have started having to deal with secondary symptoms, the ones that you get as a result of medications or symptoms of Behcet’s. The newest has been avascular necrosis (also known as AVN or osteonecrosis), the death of bones because of a loss of blood flow. This is probably a result of years of insufficient blood flow to my foot and leg, as well as years of Prednisone use.

Because of AVN, I’m wearing Danskos now. My job requires me to be on my feet and moving, and I have never been one to sacrifice my personal life because of Behcet’s. So, I have to wear Danskos to protect the bones from further injury or decomposition. Danskos are not pretty, and they are certainly not unique. They do not come in fashionable heels, and they do not come in styles that can easily be worn on a night out.

I am happy to do what I can to protect my foot, but my shoes were something that I very much considered part of my very personal identity. Now, I’m left to wonder what to do with them. I have a closet full of shoes that I will most likely not be able to wear again. Getting rid of them seems awful, almost like giving up, but seeing them every morning as I get dressed, reminding me of the sacrifices that I have made, may be more masochism than I can handle.