First of all, I am sorry for being such a sad sack lately but also grateful for all the words of sympathy and encouragement I have received from both my cyber and non-cyber friends. Being ill feeds my depression-prone soul and I have been feeling very poorly lately. My day to day responsibilities have begun to seem insurmountable and even the simplest things have felt overwhelming. In hope of help, today I drove the 45 minutes to visit the doctor and came away both frightened and encouraged.
I typically try to keep my dumb disease on the down low. I tell you when I am not feeling well some of the time, usually when it is affecting the quality or frequency of my writing. Because they are not nearly as fun as farming and fiber arts, I haven’t talked too much about the symptoms and I figured you don’t want to hear about them anyway. Today, however, I am just going to get the whole ugly mess out in the open and then make a big effort to just shut up about it from here on out, that is unless I end up in hospital or coffin.
I have a rare, sometimes referred to as orphan, illness known as Behcet’s Syndrome. 15,000 other Americans are as privileged as I to share this autoimmune disease, which causes my body to attack anywhere small blood vessels pulse. Yes, this encompasses the whole ball of wax. To oversimplify a bit, Behcet’s is a cross between lupus and rheumatoid arthritis. From the National Institute of neurological Diseases and Stroke:
What is Behcet's Disease?
Behcet's disease is a rare, chronic inflammatory disorder. The cause of Behcet's disease is unknown, although there have been reports of a virus found in some individuals with the disease. Behcet's disease generally begins when individuals are in their 20s or 30s, although it can happen at any age. It tends to occur more often in men than in women. Symptoms of Behcet's disease include recurrent ulcers in the mouth (resembling canker sores) and on the genitals, and eye inflammation. The disorder may also cause various types of skin lesions, arthritis, bowel inflammation, meningitis (inflammation of the membranes of the brain and spinal cord), and cranial nerve palsies. Behcet's is a multi-system disease; it may involve all organs and affect the central nervous system, causing memory loss and impaired speech, balance, and movement.
The effects of the disease may include blindness, stroke, swelling of the spinal cord, and intestinal complications. The disease is common in Japan, Turkey and Israel, and less common in the United States.
Is there any treatment?
Treatment for Behcet's disease is symptomatic and supportive. Medication may be prescribed to reduce inflammation and/or regulate the immune system. Immunosuppressive therapy may be considered.
What is the prognosis?
Behcet's disease is a lifelong disorder that comes and goes. Permanent remission of symptoms has not been reported.
What research is being done?
The NINDS supports research on painful neurological disorders such as Behcet's disease. This research is aimed at discovering the causes of these disorders and finding ways to treat, prevent, and, ultimately, cure them.
Today, my doctor would not give me the hoped-for steroid shot because my recent dosage has been too high, my bone loss significant (I’ve shrunk an inch), and my weight gain sudden. My neck has permanent joint damage, resulting in loss of movement, and my other joints are in danger of experiencing the same. According to my doctor, Behcet’s is tougher than RA and lupus when it is in full flare as it now. Although I have lost track of how many different medications we have tried to get my symptoms under control (it has been at least 20), all of which my body have rejected soundly, we are now giving gold a try and, being a woman who appreciates precious metals as much as the next person, I say why not?
When he first brought it up, I thought the word gold was a brand name, like Enbrel, substituting for a long pharmaceutical chemical name. But no, it is gold, auronofin, a kind of gold salt, used to reduce joint swelling, damage, and stiffness, and improve the body’s ability to perform daily activities. With the recent ads touting all the new, fancy RA drugs, auronofin is not prescribed often (because of this, Walgreen’s had to special order it for me) and it does not work for 2 to 3 out of 10 patients but what the Hell? I’ve tried almost everything else and maybe, just maybe it will be the golden key.
Although it may be selfish of me, please send a thought and prayer my way in hope that this will work and my life will once again feel manageable. As I said, from here on out, I shall endeavor to hush my mouth when it comes to my dumb disease. Tomorrow, after I go to the vampire, I will do my best to shoo this issue away from my consciousness. I know many, many people have issues far worse than mine and far fewer means to deal with them so please send a prayer their way first and foremost.
Hello, look at the ray of hope that just greeted me in the eastern sky! I think that's a marvelous sign, don't you?!