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!



When taken orally, the pills are tiny. Who knew they could wreak such havoc on my life?

I’ve taken Prednisone for 4 years now, with two small 3-month breaks. When at my medical worst, I’ve taken as much as 40mg of Prednisone a day. Now, my baseline is 5mg. I have to titrate up when I flare, and then titrate myself back down once my symptoms subside. At 5mg, I don’t really notice the Prednisone. But, when I have to increase to 15 or 20mgs, I see a substantial impact on my quality of life.

Typically, the side effects that I get from Prednisone include insomnia, increase energy levels (the one value-added side effect!), increased appetite, and mood swings. The insomnia and mood swings go hand-in-hand. When I don’t sleep, I become irritable and foggy. And, Prednisone typically makes me feel angry. Irritability and anger don’t make for nice bed-fellows.

I manage the mood swings naturally and attempt to minimize the damage to those around me. Sometimes, that means not replying to a text message for a few hours, taking a walk, or deep-breathing. But if the length of time that I have to take increased levels of Prednisone is beyond a couple of days, these methods don’t always work into my lifestyle. At those times, I’ll try to get away for a few days or hang out at my house more.

If my methods of self-regulation fail and I do commit social grievances for those around me, I take responsibility for them. I know that I’m not myself (and most of those around me do, as well), but I don’t excuse the behaviors. I admit where I’m wrong and work harder to prevent it from happening again. I do try to educate my family and friends about the effects of Prednisone so that when I’m on stronger doses they can be a little bit softer in their approach.

Like every other aspect of this illness, I try to be as data-driven and educated as possible. Below are a few articles (there are many) that discuss the relationship between Prednisone and affect. Hopefully, they will help someone else who is in a similar situation.

1: http://www.ncbi.nlm.nih.gov/pubmed/10619339 “The Psychiatric Side Effects of Corticosteroids.”

2: http://www.ncbi.nlm.nih.gov/pubmed/15014624 “Mood and Cognitive Changes During Systemic Corticosteroid Therapy.”

3: http://www.ncbi.nlm.nih.gov/pubmed/9493946 “Mood Symptoms During Corticosteroid Therapy: A Review.”
4: http://www.ncbi.nlm.nih.gov/pubmed/2246106 “Exogenous Corticosteroid Effects on Mood and Cognition: Case Presentations.”