I’m sure Sheryl Crow would agree.
Below is a story I wrote about my journey with Behcet’s Disease about 6 months ago. A lot has changed since then, but the story is still the same.
Sunday, May 20th is Behcet’s Awareness Day, and in honor of that, I wanted to share my story. I have waited until now to publicly talk about my journey with Behcet’s disease because I want to be known for much more than just having a rare disease, and (frankly), because I have needed this long to gain perspective on my story.
When I was 12, I began having mouth ulcers and skin lesions all over my body. When my GP at the time saw these, they were dismissed as bug bites, ingrown hairs, and even chicken pox. One time, after a particularly bad batch, a doctor told me I had herpes – a perplexing diagnosis since I was not sexually active. These bouts continued frequently throughout my teenage years, especially when I had a fever.
My senior year of high school, I went to my optometrist for my annual eye exam. I’ve worn glasses since I was 5, so I knew something was wrong when the exam had lasted for about 30 minutes and involved equipment I had never seen before. Finally, my optometrist told me that my right retina had detached from my eye. She said she needed to patch my eye and refer me to a surgeon. I saw the surgeon the next morning and had surgery the following day. I spent the next six weeks unable to read, watch TV, or look at a computer screen. Eventually my eye healed, and I graduated from high school.
I continued to have bouts of ulcers for the next 18 months. I was going to college and working about 25 hours a week, so I just assumed my exhaustion was from that. In the fall of 2008, I needed to walk from north campus to my car parked off campus in order to get to work on time. I noticed that when I did this, my right foot would tingle and cramp, but I didn’t have time to examine it more. As the semester progressed, I continued to have weird sensations in my foot; I even made two appointments with my GP to discuss it, but cancelled both due to other things that came up.
On December 15, 2008 (the Monday of finals week), I wrecked my car driving from my grandparent’s house into Lexington. Since my car was totaled, my mom took me to the ER to be checked out. They told me I was fine – not a scratch. That evening, my dad took me back to the house I was living in. When walking up the stairs, my foot turned white. I showed my dad, who quickly took me back to the ER. Chaos ensued, but eventually they discovered an arterial clot behind my knee and took me into surgery. A grapht was placed into my popliteal artery, and the clot was removed. My surgeon mentioned that he had never seen a clot like that without severe trauma to my leg, but everyone decided it was just another one of the weird things that happened to me.
Over the next two months, I became more and more miserable from recurrent ulcers. I finally went to see a new doctor who took an extensive medical history, then left the room for what felt like an eternity. He finally returned and told me he thought I had a disease called Behcet’s. He gave me one page of information that he had copied out of a medical textbook (the only page on Behcet’s in any of his textbooks), and gave me referrals to several other doctors.
The spring of 2009 was spent going to three different doctors and transporting test results back and forth. I tried to educate myself and my family on Behcet’s, but there wasn’t much information out there. I purchased the book The Essential Guide to Behcet’s Disease by Joanne Zeis. This went everywhere with me while I tried to learn all of the new terminology that my life was revolving around. I began a strict regimen of drugs that the doctors thought would stop my flares, and quickly learned that I had a choice between being their guinea pig for new ideas, or taking tried and true drugs whose side effects were catastrophic to my lifestyle.
My life continued along this path for the next year, with my three doctors working together to taper my dosages when I wasn’t flaring so that I could function, but increasing the doses when I became symptomatic once again. I remember feeling better from the treatment, but I honestly don’t remember ever being entirely ulcer-free during that time.
In February of 2010, I had the stomach flu, and by the end of the week, I also had a set of clots in my popliteal artery. I returned the ER and was rushed into emergency surgery to remove the clots and re-do the grapht. Complications arose, and I ended up having a fasciotomy that the doctors were not able to close in addition to the other incisions. I had two surgeries that night, and spent thirteen days in the hospital. I returned to my parents’ house on bed rest to recuperate with three incisions and a sizeable WoundVac. I was unresponsive to oral blood thinners and clotted again, so the Saturday before Easter, I was back in the hospital. Easter morning, the doctors attempted to perform a small surgery while I was awake to break up the clots, but they ended up blowing into my foot. I was once again rushed into emergency surgery, and this time I came out with medicated catheters going into my femoral artery. I had to lie on my back in the PACU for 48 hours without moving while the catheters provided medication to my arteries, and then I was taken back into surgery to have them removed.
I was in the hospital for twenty-one days this time, still unresponsive to oral blood thinners. My doctors finally sent me home, and I eventually began a regimen of shots every twelve hours to dissolve any clots that form, which I still do today. While in the hospital, my doctors had discovered that my grapht had collapsed and I had an aneurysm in my leg. My body wasn’t ready for another surgery, so I waited and healed for two months. I was in physical therapy 3 – 4 times per week, re-learning how to coordinate the muscles in my leg in order to walk.
I had my final major surgery in June of 2010, repairing my grapht and fixing the aneurysm. Despite having multiple incisions, one going from my knee to below my ankle, I spent less than a week in the hospital, and was able to recover with only a few weeks of physical therapy. I had three more surgeries in 2010, all minor surgeries repairing areas in my femoral artery where I had developed stenosis.
When I began my hospital stay in 2010, I met an amazing team of doctors who have since taken over my medical care. They were much more aggressive in my treatment, and I have experienced multiple periods of remission since then. I credit my good health to them, and I am so very grateful for the opportunities that they have given me. They have grown to be more than my doctors – I care for them and am deeply indebted to them for the gifts they have given me.
Today, I still experience Behcet’s symptoms that impact my daily life. My medications control my flares for the most part, and I am learning to function through exhaustion and chronic pain in my leg. I still have mouth ulcers and skin lesions, but they seem like a vacation from the other symptoms that de-railed my life. I have graduated from college, and I spend every day doing a job that I love. I am a very different person than I would be if I did not have Behcet’s, but I do not let it define my life. I am much more than a Behcet’s patient, and my life reflects that.
This is just my story, and while I did not focus on the role that my family and friends (especially my parents and brother) played in this, they actively participated every minute of every day. Each one of my family members, friends, doctors, and clients has their own story to tell related to my illness. If not for my family and friends, I would never have made it through this journey. The surgeries, prolonged hospital stays, and constant medication changes affect my mood and emotions daily, and my family and friends have been wonderfully supportive, even when I was unable to control the cycles of emotions I felt.
I am choosing to tell my story now for three reasons:
1) To raise awareness for the disease that has drastically changed my life. If just one doctor had heard of this disease while I was a teenager, much of my story may have been avoided. Nothing would mean more to me than knowing that I helped educate a parent, friend, doctor, spouse, or family member of a Behcet’s patient. (You can learn more about Behcet’s by visiting the American Behcet’s Disease Association’s website: http://www.behcets.com.)
2) To encourage other patients with this disease. The story I wrote was only the highlights. There were many, many other struggles I could have shared that would accurately describe my journey. People can be cruel, and the words and actions that are seemingly innocuous to them can be extremely hurtful to a person already struggling with an illness. Behcet’s is a real disease, and one that can be deadly if not treated appropriately. Do not ever let any one make you feel guilty for bailing on a movie night, sleeping in on the weekends, or taking an afternoon off work for a doctor’s appointment. Those around you may not be able to physically see what is going on inside your body, so it is easier for them to forget that you are sick. Advocate for yourself.
3) To thank my family, friends, and doctors for their help and support throughout this journey. Without them, I would have never made it through.
Since I wrote that, the Behcet’s has continued to progress. I’ve had two more surgeries (one unrelated to Behcet’s), and continue to deal with symptoms. However, I’m learning day by day to accept each new challenge as it comes and continue to live my life on my own terms.