Barbara N
03-29-2013, 01:44 AM
Hi I am Barbara, I am 59 years old and officially diagnosed with Wegener's 4-5 years ago but I think I have had it a lot longer. Many years ago I had severe pain in my ears and hearing loss. The doctors couldn't find anything wrong, so the removed my wisdom teeth from the top of the bone and killed a lot of nerves while they were in there. It helped for a little while. The next time I had severe pain and hearing loss I was diagnosed with Neuralgia Trimenio(sp) and was given Tangorex or tegretol I can't remember which, sorry. I was started on a low dose until I reached a doses that stopped the pain, 150mg. After my accident which left me with a shattered nose I still had great hearing loss and pain in the ears but the Ear, nose and throat people couldn't find anything. I started treatment and surgery in 2002, the first year was a disaster and caused many of the problems that I have today but that is a long story for another day, in all of the other hospitals they did a beautiful job and then a few months later something started to eat the flesh and around all of the new implants. Three time I spent 3-6 weeks in the hospital just for tests and analysis.but they never found anything, meanwhile I had lost the side of my head, my soft palate and all of my teeth and a big chunk of my nose. After my first hospital, ( the bad experience) I got a fungus called Rhodatarula. You can only get it in the hospital from an infected main vein tube. It is hard to detect and very slow moving and damages your immune system, heart and kidneys. so for me, it is hard to tell what causes what. For three years I had insomnia so started to write a blog and then one day I started to ride again. It has always been my life's passion. Together with a friend and riding instructor we started to work on a therapy for me and my friend with cancer and came up with something that seems to work very well. So well that after 6 months of therapy, twice a week, I stopped taking all of my medication. the steroids heart pills aspirin stomach protectors, anti-depressants tranquilizers and the list goes on. for two year I was in what I call remission; I had no symptoms. Our therapy horse went lame and in 3 months we both noticed a few symptoms returning and after 6 month the marks of purpura and other signs reappeared. In February someone donated me a horse to use for my therapy and just having her here at home to care for has made a big difference and riding her brings my blood levels down and my heart out of arrhythmia and improves my quality of life. Horse therapy, another long story for another day, but it works for me, MY horse should be fully trained in a few months so that she will be able to help other people. She has also given me the strength I needed to get back out in the world because I was to shy with all of my scars and missing face, but I don't care anymore, I am very happy. The people that matter seem to look right passed my disfigurement, which is still hard for me to do. Thanks for listening, Barbara