2013: A Year in Review

2014 is just beginning, and with it comes feelings of hope and freedom. An important aspect of living in the present is understanding and accepting the past, so here’s my 2013 year-in-review post:

2013 was a kind year to me. I achieved many personal and professional goals, and none of those would have been accomplished if my Behcet’s hadn’t cooperated. I began taking a new drug (Cimzia) in February, and it has allowed me to live a year without any new major complications from Behcet’s. I haven’t had surgery in 18 months, and I’ve successfully been off of Prednisone for 2 months (except for a brief dose to get over some bronchitis / pneumonia). This is now the longest that I’ve been away from that necessary evil in 5 years, and it feels wonderful. Being able to sleep through the night, coupled with not feeling like you’re on an emotional roller-coaster without a seat belt, certainly gives one a new outlook on life.

I learned a lot in 2013. I started the year by attempting to meet more people with Behcet’s. I quickly found that (and forgive me, there’s really not a way to say this that sounds any less uppity, because I’ve tried) most people with Behcet’s are very different from me. I’ve realized that the majority of people with Behcet’s who belong to secret Facebook groups or frequent private message boards for other patients have never experienced the worst sides of the disease. Many people simply have not been through 10 surgeries and felt the rock-bottom pit-in-your-stomach feelings that come with 6 months of bed rest. Many people have not had their mother give them a shower at 21 years old because they simply couldn’t move for the feet of incisions that covered their body. I’m not trying to dramatize what I’ve been through, but it did happen. And because of that, I choose to live every day doing things that free me of that time. So, I’ve learned that secret Facebook groups and message boards aren’t for me. For me, I need to be able to get up and go to my job because it’s Monday, and that’s what I do on Mondays. I need to go watch Survivor (yes, it’s still on) with my friends on Wednesdays, because it’s Wednesday. I need to go get dinner with a dear friend on Thursdays, because it’s Thursday. No excuses, no whining about my leg hurting, because there have been Mondays when I didn’t get to go to work because I was in physical therapy all day. There have been Wednesdays where I couldn’t see my friends because I was in ICU. There have been Thursdays when I couldn’t eat because I had been placed on NPO until I knew if I was going to need surgery. However, I can say that some people I have met through online research are simply wonderful. There is one Behcet’s blog in particular that I still follow, behcetsland.blogspot.com. This blog is hosted by Nikki, a fellow Behcet’s patient, and it chronicles her life with the disease.

I grew a lot in 2013. I saw a psychologist for several months. I needed to finally process and move on from the feelings of anger, guilt, and anxiety that Behcet’s has brought me. I realized that much of my constellation of symptoms mirrored that of a patient with PTSD, and I worked very hard to move through the emotions that came with this, instead of burying or ignoring them. I am proud to say that it no longer takes me 3 – 4 hours to fall asleep at night. While I still feel horribly badly for what my family and close friends went through while I was at my sickest and continue to worry about while I am healthy, I know that I am not responsible. I am still angry over what has happened; I am still angry that I have this disease; I am still angry that it has changed my life. However, instead of being an anger that is so strong that it is debilitating, it is now a slight smoulder in my chest that I use to fuel me when I need it most. Do I still have bad days? Yes. Absolutely. But the bad days are manageable. I feel much more at peace with my life, and that gift is priceless.

With all of the change that 2013 brought, I am excited for 2014. Here’s to health and happiness!

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Revisiting “Shoes”

If you’re not a regular follower of my blog, you can find the link to my original post, “Shoes”, by clicking here

 

It’s now been three years since I had the last major surgery on my right leg in June 2010. Although I feel that my leg will always be a source worry, I think that the range of motion, scars, nerve sensation, and general muscle strength that I have now will be fairly stable going forward. After three years, I don’t think that I can expect much more in terms of recovery.

In the past year, I have struggled with avascular necrosis (AVN for short) impacting the bones in my foot. I have worn Danskos almost exclusively for 10 months, and most of the sharp pain has diminished. I’m left with minor aches and the general feeling of having a stone in my shoe where a joint has collapsed. 

When I moved into my house, I put all of my high heels in the closet in the guest bedroom. I felt that having the shoes in there kept them out of sight for the majority of the time – and therefore less of a reminder of what used to be – but they were present enough to make me hope for the time where I could wear them again. 

Tonight I realized that today is just mere days after the three year anniversary of a surgery that left me with an incision from my knee to below my ankle. I went into the guest bedroom and looked at my heels. I wondered what I should do with them, then decided that I should try them on. I tried on my favorite night-out-on-the-town shoes first, and quickly discovered that I no longer have the control to fit my foot into the shoes. My “bad” toe bent uncomfortably in the shoes, and I had no way of fixing it. Next, I tried on a pair of shoes that I frequently wore to work on days where I knew I was going to have a meeting or important event. Those shoes had a modest, inch-and-a-half heel, and while not the most comfortable, they were manageable. I continued trying on all of my heels, and came to the conclusion that my days of wearing 3″ stilettos were behind me. I no longer have the strength in my foot, muscle control in my toe, and general flexibility to walk in those shoes. 

I sat in the floor, surrounded by shoes that serve as a very tangible tie to my past, and wondered what I should do. I began sorting the shoes into two piles: one pile of shoes that I felt had a modest heel that could probably be worn for short periods of time while I was mostly sitting (like out to dinner), and a second pile of shoes that I knew I would never be able to wear again. 

I put the latter pile into a bag and texted my cousin. She’s about to turn 18, just graduated from high school, and is venturing into the college world. I so vividly remember that summer between high school and college – it was so full of excitement and preparation, nerves and adrenaline, wonder and anticipation. I remember that I had everything figured out – I knew exactly where I was going to college, how long it would take me to graduate, and what I would do after graduation. I knew that I wanted to get married and have babies (not that I think that’s what every person should do, it’s just what I wanted for myself). I remember having a plan and a timeline, and having the hope and excitement that comes with both.

My cousin, who I am so proud of, is now experiencing that same summer. I decided that I would give her the heels that I can no longer wear. The dreams and aspirations that I had the summer between high school and college have grown and changed so many times in the six years since. The shoes that I wore for a couple of years before Behcet’s changed me no longer fit the life that I have made for myself today. But, a whole new world is opening up for my cousin, and I want to pass along something to her that meant so much to me.

In the end, it’s not about the shoes at all. It’s about growth and the realization that I don’t have to go back to where I was; I can dream a new set of dreams. The innocence of youth may be gone, but the freedom of letting go is at my fingertips.