The Behcets Post

It was a bright sunny morning in 2001 and I was supposed to be homeschooling Tim. We did some journal writing and then decided we wanted to crawl in bed and watch ET. We would find a way to justify our actions later. In the midst of the movie we got "The Phone Call". Kevin called and said "Turn on the TV. We have just experienced a terrorist attack." I remember Tim and I watching the events on TV. It was paralyzing. Some members of our church had called and we were gathering at the church to pray. I went. I had not been feeling well. I felt fatigued and my throat was sore. It had been sore since Labor Day. Here it was September 11th, 2001 and it still hurt. No fever. No other symptoms. My preacher had noted that day when I prayed that my voice sounded hoarse. The stress of the events that unfolded with the tragedies of 9/11 soon revealed an "ugly" sickness within me..."Behcet's Disease".



My throat soon became so sore and my mouth became filled with sores and lesions. I was in such pain I could not even swallow my saliva. I sat with a bowl and towel to cover it so I could "drool" into it. I slept with a towel under my chin to catch the saliva as I slept. I became so dehydrated that I was put in the hospital for a week in October. I had been to my family doctor, an Ear, Nose and Throat specialist, and other numerous health professionals and no diagnosis was available. I became stiff in my joints, my eyes became swollen and red, extreme fatigue and pain overwhelmed me, and the open sores were all over my tongue, inner cheeks, throat and gums. I was hospitalized again in November for dehydration. It was late November when a Rhuematologist came and visited me upon the request of my ENT doctor. He had a specialty in treating a specific auto immune disease called Behcets Disease. I was finally diagnosed. I would start a journey using several different treatments to no avail of relief or remission for several years.



I went to Wake Forest University to see a Dermatologist who had near 100% effectiveness in treating Behcets with a med that would literally dissolve the mouth sores. I had to go through government screening and sign my life away to receive the meds. They didn't work. I have been treated with every med known to help this disease available. I have had infusions, transfusions, and high dollar meds and treatments. One treatment and I mean only 1 time treatment cost $29,000 dollars. I am a resistant case. I still battle the disease. I only know that when a onset of the sores occurs that rest and I mean bed rest is the only thing that keeps me from an all time "old" time breakout. I control the outbreaks with Prednisone. I have all the side effects of using Prednisone for the past 7+ years. I have weight gain, blood pressure issues, steroid induced diabetes, and other physical challenges.



So why tell you all this? Today I lay in bed with a this lap top in order to rest. The sores are popping up everywhere. I know only to rest. I will be fine in a couple of days. I will always have sores. I have them everyday. But the quantity and severity fluctuate. I want to stay on top of the pain and hopefully control the out break. I am a pro at this. I have read on Behcet websites that many who have this disease are often told that they don't look sick. I truly understand. We hide our pain well. I guess you should know we manage our pain well. I have learned to live with pain. Just eating can be painful. We as Behcet victims may not feel well but we hide it well. No one wants to be seen as a "whiner" or "woe is me person." I for one put on my make up, stay involved in life, laugh, walk , talk etc. and still carry sores on my body and mouth. I think I have done this so well no one knows I am sick and my long time friends forgot about my illness or think I am well. It isn't that way but I sure want them to think it. I don't want to be a burden.



So Ladies, today's blog has no big life lesson, or "pick me up" theme. I just want you to know I am a sick puppy today and I have struggles like you. I am not some Pollyanna, as a friend has written in her blog. Yet I wouldn't mind at times. I am for real with real life situations. I hope to help you along the way in life by sharing my life. As for today, I sit with my tea and honey, a few good books and thoughts of you my friends. I can't wait to share something exciting and fun. Maybe Monday. I love ya all.



Below is a description of my auto immune disease by Mayo Clinic should you be interested.



Behcet's disease symptoms vary from person to person. Behcet's disease may disappear and recur on its own. The signs and symptoms that you may experience depend on which parts of your body are affected by the inflammation of Behcet's disease. Body areas most commonly affected by Behcet's disease include:


Mouth. Painful mouth sores, identical to canker sores, are the most common sign of Behcet's disease. Sores begin as raised, round lesions in the mouth that quickly turn into painful ulcers. The sores heal usually in seven to 21 days, though they do recur.


Skin. Skin lesions may occur in people with Behcet's disease. Skin problems can vary. Some people may develop acne-like sores on their bodies. Others may develop red, raised and tender nodules on their skin, especially on the lower legs.


Genitals. People with Behcet's disease may develop sores on their genitals. The sores most commonly occur on the scrotum or the vulva. Sores appear as round, red and ulcerated lesions. The genital sores are usually painful and may leave scars.


Eyes. Behcet's disease may cause inflammation in the eye — a condition called uveitis (u-ve-I-tis). In people with Behcet's disease, uveitis causes redness, pain and blurred vision in one or both eyes and may come and go. Inflammation that occurs in the blood vessels of the retina is a serious complication of the disorder.


Joints. Joint swelling and pain most commonly affect the knee in people with Behcet's disease. The ankle, elbow or wrist also may be involved. Signs and symptoms may last one to three weeks and go away on their own.


Vascular system. Inflammation in veins and large arteries may occur in Behcet's disease, causing redness, pain and swelling in the arms or legs when a blood clot results. In fact, many of the signs and symptoms of Behcet's are believed to be caused by inflammation of the blood vessels (vasculitis). These signs and symptoms may come and go, and they may move from one limb to another. Inflammation in the large arteries can lead to complications such as aneurysms and narrowing or blockage of the vessel.


Digestive system. Behcet's disease may cause a variety of signs and symptoms that affect the digestive system, including abdominal pain, diarrhea or bleeding.


Brain. Behcet's disease may cause inflammation in the brain and nervous system that leads to headache, fever, disorientation, poor balance or stroke.