life as i know it

Been diagnosed with TN earlier this September, then more than a couplah weeks ago, was hospitalized because of a suspected adverse reaction to my TN pain maintenance drug: Tegretol. The diagnosis was Erythema Multiforme- skin allergy in the form of rashes in multiple forms.

Today, I had to see my allergist again who is actually the best doctor in this goddamned city. He tells me I have Vasculitis. I forget w/c form. He assures me it's not life threatening and that I'd need to have several tests and that I've to go thru steroids. For the life of me, it's actually making me nuts. My skin had lesions and is itchy and dry and scaly. FML.

So, I did some reading about the condition and found out that it's a disease so rare and it's hard to diagnose and it takes prolong medication. I'm soooooooooo screwed.

I know need remission- again. I'm grateful TN attacks are at bay.

Sometimes, I do not know what to do with myself.

--

At least today, J and I had beef burger, green tea, sour creme and barbeque fries at Taters. Before seeing Doctor Rafaelito. Then had coffee at Bob's SM and I've enjoyed watching him play on a digital baby grand at Casio.

Everything's bad as it is good. Sad as it has made me happy. Fucked and so put together.

links to learning about vasculitis:
http://www.mayoclinic.org/medical-edge-newspaper-2010/jan-01b.html
http://rarediseasesnetwork.epi.usf.edu/vcrc/learnmore/definitions.htm
http://vasculitis.med.jhu.edu/faqs/faqs.html

xx

tic douloureux

i officially have a name for my jaw pain. the doctor diagnosed it as TN- trigeminal neuralgia or in fancier term tic douloureux.

is a neuropathic disorder characterized by episodes of intense pain in the face. Originating in one of the three trigeminal nerves. This pain may be felt in any or all of the following: the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, or jaw and alongside of the face, some patients also experience pain in their left index finger; it is not easily controlled or cured. It is estimated that 1 in 15,000 people suffer from trigeminal neuralgia, although the actual figure may be significantly higher due to frequent misdiagnosis.

It is more common in females.

TN brings about severe stabbing pain, electrical shock sensations, a pressure or crushing sensation, and a burning sensation may also be reported ; these sensations may be caused from a touch to the affected area of one's face, but in many patients the pain is generated spontaneously without any apparent stimulation.

Individual attacks usually affect one side of the face at a time, lasting from several seconds to a few minutes and repeat up to hundreds of times throughout the day. The pain also tends to occur in cycles with remissions lasting months or even years.

-from wikipedia

Doctor says I have to take this anticonvulsant drug 3 times daily to control the attacks. I'd have to go thru a series of tests including CBC, ESR, urinalysis, and MRI with contrast- meaning an IV would be inserted on my hand while undergoing MRI.

Inasmuch as I don't want to be depressed, I couldn't help it. If the MRI results comes out badly, I might be diagnosed with multiple sclerosis as well. FML.

http://www.fpa-support.org/