It's been a while since I have last posted, and I feel terrible about that. This past year time has really just gotten away from me. I guess that could be a good thing.
I do have some good news to report. For the first time ever (knock on wood) I am experiencing a decrease in symptoms. I would not say that I am in a remission, but I am well on my way. More so than I ever have been in the past 8 years. I had not been on any new treatments for Behcet's for about a year when I approached my rheumatologist about a medication I had found while researching on my own. It's called Delzicol, previously known as Asacol. It is an anti-inflammatory medication that is typically utilized to treat Crohn's and Ulcerative Colitis. Some members of my family had taken this for their GI autoimmune diseases. My thought was compared to the other toxins that I had put into my body like the biologics and chemotherapy meds, this couldn't hurt. The side effects are minimal and it is similar to steroids but without the associated side effects. My rheumy said absolutely you can try it. I am not over exaggerating when I state that within two weeks my symptoms began to improve. My oral ulcers generally occur in multiples, are very large in size, and last at least three weeks to a month in duration. I noticed that they were about half the size as they would normally get, I would not get as many, and they did not last as long. I was thrilled! My rheumatologist then added Enbrel. I have been on Enbrel three times prior to this and it has never worked. The combination of the two appear to be helping me a great deal. I am able to get down to 5mg of Prednisone for the first time ever. Although recently I have had to increase to 30mg since then I am unable to get below 10mg without flaring. But I still feel this is all an improvement over my past flares. I used to be hospitalized for flares quite frequently.
I did have a third episode of pancreatitis in December. The first time I got pancreatitis it was from taking Imuran. I promptly stopped taking that medication, however ten months later I got a second episode of pancreatitis that was so bad it nearly killed me. The recurrent episodes caused alarm not only in my mind but my doctors' minds as well. So I met with a well known GI doctor in the area who specializes in the pancreas. He performed a test called an endoscopic ultrasound, similar to a regular endoscopy. He believed that I may have had tiny microscopic stones in my gall bladder that were not visible in the MRI. My results, however, came out normal. There were no stones. I was severely disappointed because I thought that if I got my gall bladder removed that would prevent further episodes of pancreatitis. Let me tell you, having lived with chronic pain for the past 11 years of my life has given me a high tolerance for pain. Yet pancreatitis is the most painful thing I have ever endured.
I have been going to physical therapy for my back and knee pain. I think it is helping, slowly. I know that I am feeling better because in the past I would never have been able to keep all these appointments. I have to go twice per week and normally I would be too tired or wouldn't feel well enough to go. That doesn't mean I am always feeling well, but I am pushing myself.
I have also started a new journey that I am extremely happy about and proud of. Since I am not licensed as a psychologist, it creates limitations as to what I can do work wise. Not only does that create limitations, but the fact that I am ill and would most likely get fired because I would be calling in sick more often than actually going in to work. So I decided to offer life coaching sessions. I feel I have a unique perspective to offer since I have a doctorate in clinical psychology and I live with a chronic illness. I specialize in providing services to other individuals who are suffering from chronic illnesses, but I will work with anyone who wants to make positive changes in their lives. This has helped me a ton because it makes me feel like I have a purpose again. I love helping people and it makes me feel good to know I can make a difference.
I am also starting to become more involved in a church. I feel like I need to follow my instincts and lately I feel like the church community can provide me with something that I may not even be aware of yet but that will fill a void in my life. I have found a few spiritual leaders in my life that have been wonderful at educating me, supporting me, and encouraging me along this process. I just feel it's the right time in my life to do this. I just may get some answers as to why I have BD and what purpose it serves in my life.
It's so difficult trying to live with a chronic illness as it affects every single aspect of your life. I am discussing this and many more issues that Behcet's Disease causes because May is National Behcet's Disease Awareness Month. So on Facebook in my support group, called Behcet's Disease Support: The Blue Dragonflies, I have started what's called The 31 Days of Behcet's. If you suffer from Behcet's and you are not yet involved in the support group, please feel free to send me a request join. It is such an amazing group of people and the connections you will make will be for life. I hope to be more active in the blog again. Thanks, as always, for reading.
