Posted by Laura | Posted in Uncategorized | Posted on 15-05-2010
**Warning! This post contains very personal experiences and some graphic descriptions. Reader discretion is advised.**
Some of you may be aware that I have a disease called Behcet’s Disease. The month of May is the designated month where those of us with this disease (and those who care about us) are charged with spreading the word and educating others about this disease. The benefits are two-fold as they enlighten people to the disease and it has the potential to generate support for research.
Behcet’s Disease, or the Silk Road disease was discovered along the Silk Road in the Middle East and Asia. These densely populated areas have the highest concentration of people who are living with Behcet’s but not enough doctors to research and treat the disease. First thing to note is that this is not contagious, so those of you who will meet me at Balticon, have no fear. I won’t be sharing . Secondly it is not necessarily hereditary either. The cause of the disease is unknown, but there are some things that researchers have speculated as to how it is transmitted (and how I got it). When infants are still developing, they have little to no immune system which makes them vulnerable to many diseases. When I was an infant, my mother was working at the White House, and had a family from Turkey watch me so she could visit and feed me during her lunch hour. The speculation is that someone in this family was a carrier of the disease and because I was so young, the disease was able to take hold in me. Fun fact, in the Middle East and Asia more men are diagnosed with Behcet’s than woman. In the US more women are diagnosed than men.
Behcet’s has four main symptoms that are looked at for diagnosis. Mouth sores, genital sores, inflammation of the eyes and skin problems. I have experienced all four of these in my life time. Looking back at my medical history knowing what I know now, some of the medical mysteries that the doctors could not figure out make sense. The false meningitis, the constant mouth sores, fevers, really bad acne, patches of red skin that we thought was ringworm. With this new knowledge almost all of it can be attributed to Behcet’s.
You are probably asking, “How did she get diagnosed?” Well, I am not one to disappoint my readers, so I will give you the details.
When I got out of the Army in 2003 and after my back had recovered from it’s injury, I needed a money to pay for rent, bills, well you all know the drill. I started to do co-ed grappling. What? Don’t look at me like that. The money was good, I was staying in shape, and I didn’t have to do anything compromising or ethically unsound. I was pretty good at it to thanks for Uncle Sam and my hand to hand combat skills. Sorry. Got side tracked. Anyway I was on a wrestling trip in Massachusetts. I started feeling really sick after my last match. I couldn’t keep any food down and I noticed that I was in a lot of pain in my genital area (I warned you that this gets graphic. If you don’t want to hear more I suggest you either scroll down or click to another page). What I saw when I looked in a compact mirror were a couple of small sores on my hoo-ha like I got in my mouth. I had no clue what it was but knew that I needed to go to the doctor’s as soon as Monday came around.
I didn’t make it until Monday. On Sunday, my roommate had gone to work and I was in such pain that I could barely walk from one room to the next. I called two of my good friends who brought me to the emergency room. We waited for maybe 20 minutes, but for me I thought it was hours and had a hard time managing my pain. Terrified did not begin to describe what I was going through. I thought I had a million and one potentially deadly diseases and with the imagination that I have, well I was coming up with some very gruesome scenarios. The ER doctor diagnosed me with Herpes and gave me medication to get the inflammation under control and some serious pain meds.
With Behcet’s disease, the immune system is supercharged. It will go after a scrape, the slightest foreign body, or something of that nature and kill the intruder. The problem is that it keeps attacking even after the foreign body is dead and gone, creating sores and lesions. The meds that I was given apparently boosted my immune system even more, and the next day everything was 10 times worse. The couple of sores in my genital area had turned into nickel sized lesions with the skin hanging on by a small bit of flesh in some areas. I thought I was being eaten by whatever was going on and again was petrified.
I got in to see the doctor on Thursday that week. That meant 4 days of pain for me. You know it is bad when the doctor says “Hmm, give me a moment, I need to check something.” But it is worse when they return with 3 other doctors to take a look at your hoo-ha and they give the same expression. That day could not have gotten any worse for me. I was supposed to sing with my band for a charity show that night, but that was looking less and less likely as the pain got worse through the examination.
Finally the doctor stated that she would need to remove them that day, if for no other reason than to give me some relief and to figure out a diagnosis. So my aunt brought me over to the surgical building and I called my mother to let her know that I was going into surgery. All I got was her voicemail which sucked because when you are that terrified at 18, all you really want is your mother, but my Aunt Charlene did pretty well in her stead.
After two hours I woke up. I remember saying that I wanted peanut butter toast, and then asking if I got to go home that day. I was still heavily under the influence of the pain meds but I could walk on my own for the most part. We had about an hour until I needed to be at the show, so my aunt rushed me home where my mother was waiting in a frenzy. As I put on my outfit and did my hair and make-up, she got out her frustrations about not knowing what was going on. Such is the life of a working mother I suppose. Doing everything she can to support herself and help me out, but she couldn’t be there in person when I needed her. I have never held that against her because I am grateful for all the times she has been there.
My mother had already brought my electric piano to the show and my band mates were eagerly waiting for my arrival. I had to brace myself on the wall as I walked with my 3 inch heeled, knee high boots. Our bass player and my “twin” Joe told me I looked like I was drunk. I told them quickly that I had emergency surgery (though it was really just a biopsy) and that the pain meds had yet to wear off. “Just make sure I don’t fall and I’ll be fine” is the last thing I remember saying to them.
The performance was a complete blur, but apparently I didn’t screw it up. I had a couple of stumbles and slurs and the way I hear it, I held on to the microphone stand for dear life for most of the songs.
When I met with the doctor the next day, she told me she had removed 7 lesions in total and that by process of elimination she suspected that I had Behcet’s disease. It would be 2 months before I had an actual diagnosis. Since then I have experienced a lot of the main symptoms and still get plently of oral sores which makes eating and talking difficult. I have gone through a round of chemotherapy to get my arthritis under control, but because of both the cost and the horrible effect on my health, I opted not to continue past 6 months. I would rather have a few REALLY bad days because of my disease, but still have many good ones, than spend day after day as a nauseous wreck like I was during chemo. For the most part it is under control and my outbreaks are less frequent, but still pretty strong.
So what prompted me to post all of this? The first reason was the Behcet’s Awareness Month, and the second is that this past week I have developed a really bad outbreak on my skin and I am starting to get a couple of sores in the back of my throat. No worries though. It is nothing I haven’t dealt with in the past but it is definately on the forefront of my mind.
Everyone asks me what they can do to help. Here is my response to that. Support. Emotional support is great and I can never have enough of it so long as it isn’t a pity party. I am not dead yet, and am not planning on it anytime soon. The other support that I ask (if you are able) is to support the American Behcet’s Disease Association. They do a wonderful job in the areas of education, support, research and networking. They make sure that people with this disease do not feel alone.
Thank you all for taking the time to read this.
So that last post really brought people over and got some comments rolling. Thanks for the suggestions on my next audio listening experience. In other news, tomorrow is the release of a new chapter for Prisoners of the Alliance. One of my favorite characters to write for too. Maela. Go to www.scrivenerscircle.com to get caught up on the other prisoners so far and check in on Monday for the new chapter.
Be well all.
Follow me on Twitter @ LN_dragonsong.