Hi Folks,
When I finally decided to accept the fact that I had Morgellon's and proactively sought out help in this matter, I immediately realized that this ailment we call Morgellon's, carried with it sterotype profiling. It soon became apparent that the doctors had already read my records, and were basing their information on previous notes, rather than really trying to get to the root cause of the problem. My dermatologist has at least accepted my suggestion we try topical cream Permethrin, and she prescribed for me anti-Dermodex Invemectin medicine.
4 years ago when this started and I had surgery done on my 1st lesion, I asked my surgeon, if he had heard of the Demodex mite. The reason for asking was that another lesion started within a day after surgery, and a couple days after having my stitches removed, I noticed a fiber coming out, and literally pulled it out of the stitched area. Yes, I called their office and asked if they could have forgotten a stitch. Their reply was no, also the fiber wasn't the same texture or color. At my follow up appt. I told my surgeon that I felt that their was something under the skin, due to another lesion, and had been told of the Dermodex mite that could cause skin reactions. Dr Shi looked at me and told me he had never heard of it, and that perhaps I should see Psychiatry.
I was astonished when my Dermatologist tells me a week ago, that we could try some medicine that deals with a skin parasite called Dermodex. My reaction could have been to tear this woman's hair out or laugh outloud. (I mean after all, It wasn't her, who had told me that there was no such thing, and that I should see Psychiatry.)
After they announced that Kaiser/CDC had chosen Northern California for their clinical trial research, I was again astonished to find out that the Bay area represented a large number of recorded cases of "unknown dermopathy". Where was everyone? It seemed like the Medical industry had done their job in keeping the people divided and conquered. By using tactics that promoted fear and self-esteem issues. Once normal people who had lead active lives were now so homebound, that it bordered Agoraphobia. In fact, I had a response sent to me when I first started advertising and seeking others, which said it all.
'many of us morgies are still private treating ourselves cause of fear of being contagious ,'
this person chose to support her cause by donating to the MRF. I congratulate her on at least looking at the internet boards and keeping up on the latest information, as well as her donation efforts. Yet, her words,however, echoed many others thoughts. How many more were out there afraid to go out in public. Even if this is contagious, which, fortuntely in my case it has not been, why be afraid of meeting like people sharing the same symptoms of the disease?
Because we have been battered.Wikipedia
Battered person syndrome is a physical and psychological condition that is classified as ICD-9 code 995.81 "Battered person syndrome" NEC or otherwise included within DSM-IV as a sub-category of post-traumatic stress disorder....The condition explains why abused people often do not seek assistance from others, fight their abuser, or leave the abusive situation. Sufferers have low self-esteem, and often believe that the abuse is their fault"
I, too, am not the same woman I was for the first 40 years of my life. I have become a recluse. I do my shopping at night so that I won't see anyone I know and have to either explain why I have sores on my face, or be distracted while they stare at them. I have not dated in 4 years, though that might be good thing
It is a struggle everyday to go to work and face my students. They are a bit more forgiving and don't really care. Some have even been sympathetic. I really believe in my heart that support groups that offer services in which Jonsi and Jo and others have outlined, will help us on all levels.
Sorry I didnt get to the forum until late. I live about 60 miles north of SF. It seems like everyone knows you on the board. We haven't been introduced, so please respond back when you can, or email me. Either way. You mentioned patients. You've peaked my curiosity.
Its time for bed, need my beauty sleep.
Carrie/chocket