i wish i could make a documentary to record the frustrating process i am going through in order to find and get help for my chronic suffering.
i need a small camera crew to follow me around as i scour the web, call different doctors' offices, talk to their answering machines or get the run around from their staff, go to expensive appointments and listen to what the doctors say (and don't say), listen as i read aloud the e-mails i send to my fellow suffering friends, maybe hear some of their accounts, just so the public could get an idea of how very difficult it is to find a doctor to help someone with my condition, Persistent Genital Arousal Disorder (PGAD), or just to find a doctor to help with ANY kind of chronic pain.
My dad had Small Fiber Neuropathy (SFN). 60% of SFN is associated with systemic conditions, such as diabetes, HIV, and vasculitis. The other 40%, such as the SFN my father had is idiopathic.
the definition of Idiopathic is: Of unknown cause, used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.
PGAD is far more rare than SFN, but it is also idiopathic.
Small fiber neuropathy affects an estimated 15-20 million Americans. Sufferers experience pain and burning sensations in their toes, feet, legs and hands. It could best be described as damage happening to the nerve endings of your skin's outer layers.
if you google SFN, you will find out there is no known cure. doctors prescribe anti-depressants,
anti-convulsants, lidocaine patches, and TENS UNITS. sound familiar? if you scroll down a few blog entries, you will see that i have been prescribed the same things for my PGAD.
if you visit a SFN on-line support group, you will see the ages range from people in their 20's to their 70's, and if you read their stories of how they suffer, how they cannot find competent doctors, medications that help, or doctors who give a damn, you would find their words are hauntingly similar to the ones posted by women in the PGAD on-line support groups i am in.
for months my father had seen many doctors in Atlanta, Ga who could not properly diagnose his pain. he eventually saw a pain doctor who was an arrogant son-of-bitch, which i can call him having spoke to the bastard myself. my dad and my family soon became very frustrated at the lack of help he was being given in Atlanta, so we decided to go to the Mayo Clinic, famous for their teams of competent physicians. i cannot recall just how many doctors he saw, but he saw a range, at least 5, from a neurologist to a psychiatrist, and other specialists, and only one out of those 5 properly diagnosed him. but you know how the story goes...by then it was too late.
if my father had not taken his life, he'd have had years similar to mine, with various doctors writing various medications --and he didn't tolerate medications well. all the ones he had been prescribed for the 3 months of his suffering, he had adverse reactions to.
it's been 7 days since my caudal block, and it is safe to now say it did not work. at all. my PGAD is the same as it was before. so today i will be making phone calls, trying to get through to my pain physician, trying to get through to my general practitioner to see if the idiots who messed up my 2 pelvic MRI's (and somehow missed my broken/deformed tailbone) will do another MRI at no cost, since it cost us more than we could afford in the first place. it's very hard to actually get a hold of my doctors, i can call and even e-mail them, but their nurses call me back, and there is waiting for more return calls or e-mails, and refills, and don't even get me started on the hell that is the Wal-Mart pharmacy!
a dear, old friend of mine recently sent me what she called a "now-famous article" (i'm assuming in the medical community) called, If You Have To Prove You Are Ill, You Can't Get Better: The Object Lesson of Fibromyalgia by Nortin Hadler, written in 1996, and it only further proved my point that the medical field, especially physicians, are still lacking in the two vital things most needed by their patients: a listening ear, and then an aggressive plan of action to end their patient's pain.
we who are suffering feel lost. i...feel...lost!
here i am, already suffering, but must build up the energy to not only FIND a doctor who MIGHT be able to help, but then it's up to ME to MOTIVATE these doctors to help me!
this is wrong, people! so fucking wrong, and such a fucking shame.