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!

Cimzia #3 and iHealth Log Review

On Friday night, I took my third set of Cimzia injections. I had to do it a day earlier than my previous injections due to some family commitments going on this weekend. I again got the immediate bad taste in my mouth and itchiness that came with the initial 2 rounds of injections, and this time I felt very shakey and jittery for about 24 hours after the injection. Otherwise, I feel like I have done very well. I spent Saturday doing some spring cleaning at my house and preparing for my dad’s birthday celebration the next day. Today, I have spent time with my family and focused on my lengthy to-do list for work. I did my research before starting Cimzia, so I am familiar with the possible side effects, as well as the “internet side effects” that many people talk about on the Cimzia message boards. I feel very grateful to have not yet experienced any major issues with the Cimzia injections, and I am still very hopeful that they are working. I had two small skin lesions this week, but I also had arguably the most stressful week that I have had in months, so they could easily be attributed to a stress-induced flare.

I recently got an iPhone (I’ve been a Blackberry woman for four years, but was unsure that the company would be around for the next two years before my next upgrade). I have a Mac, iPod touch, and iPad, so I am familiar with many apps. However, I was looking through the app store for something that would help me keep track of my current medications and symptoms. I have considered in the past just tracking these things on the calendar in my phone, but it can be difficult to determine which notes are directly related to my health and which are other unrelated appointments. 

I found the app iHealth Log (a free download!) and gave it a try. This app allows you to record all of your medications, as well as weight and other measurements. It also has a “diary” where you can create an entry when a medication is taken or a symptom appears. Most importantly, it has an “In Case of Emergency” section where you can record critical medical information as well as an emergency contact and the medications to which you are allergic. 

I always find it difficult to remember exact dates or symptom durations when I’m in the middle of a doctor’s appointment, and I always strive to be as informed and data-driven in my decisions as possible. I love that this app allows you to record anecdotal information in a “diary” format, then easily access each entry to refresh your memory or supply you with specific details. I would love to see this app expand to keep track of more specific lab work results or compile doctor’s appointments; I would also love to be able to export the information that I log to other file formats. Overall, though, I’m impressed with the user-friendly interface and stream-lined approach to what can be a very complicated data system.