BarbB

Health Interests

Fibromyalgia,  TMJ,  Trigeminal Nueralgia,  MPDS,  CFS,  Costochondritis,  neuropathic pain,  head,  neck,  face,  jaw,  back pain, 

Drugs I am Taking

Neurontin,  Relpax,  Vicodan,  Valium,  Voltaren,  Zantac 150, 

About Me

I've had 17 surgeries in my life, including 2 failed TMJ reconstructive surgeries, I am grateful for every blessing in my life despite living with and doing my best to remain indendant while being held captive by multiple chronic pain disorders that are documented but are not treated by any specialist. At age 47, I live an extremely solitary existance with my feline fur kid family, I've found other humans do not understand or accept what they cannot see or feel, so one is chastized for not being "normal". I maintain the attitude that I'll not let the severe chronic pain disorders to own me, to defeat me, but more often than not it is the case to some degree, my life is customized in that I do my best to make the best of good, bad and in between days. My world is a place nobody gets, the solitary existance, being home in darkness and silence 99% of the time, that I dare not make plans, the inability to perform some tasks that are just normal daily things to most people, even just around the house things. Nobody believes that things like eating, taking a shower, getting dressed, remaining upright for very long equates to flare ups of pain in a vicious way, yet it is my truth, my reality. I hope and pray for the day that someone who understands this reality, that is a health care provider will extend treatment, even to lessen the degree of pain and debilitation, restore some lost quality of life. I did once consult with a neuromuscular dentist who understood, that was around 5 yrs or more ago, so I'm sure the 50K pricetag for treatment has increased, not having the 50K (who does?), I could not treat with this dentist. A pain mngt doctor consulatation, sadly the metaphor of myself being a pile of dried and brittle wood, fine if undisturbed, put through hell if moved, stepped on or set on fire, which is what movement creates in my body, unbearable flare ups that stop me in my tracks, put me down and out, prohibit any normality, upsetting but is so true. This doctor not an "in network" doctor, expensive to treat with, I could not seek the nerve blocks that did not contain cortisone or steroids, or afford the Lyrica I was told I'd need to take forever, along with pain meds to maintain basic functionality, any normality in my life. My in network PCP has deferred treatment of anything to the out of network MD I see, my situation is "too complex, too complicated, too many problems that need addressed" for her to handle, she does not refer me to specialists, tells me if I find one, let her know, she'll give the referral, but she knows of none personally that are in network. My general practioner MD is very limited in what he can offer as treatment, though he understands more than other doctors what I am dealing with, does his best to extend what pain mngt control he can through medications the HMO will cover. He cannot order tests or send me to specialists, make special authorization requests as he is not an "in network" doctor. One of my top 2 fears in life is that I will lose my independance, the ability to take care of myself, that I will end up completely bedridden in a state of pain so severe that no doctor is or will treat. I am single, have no children, no siblings, no close in person friends, my parents help with upkeep and maintenance of my home, but they do not really understand either. I never wish to be a burden to them, I refuse to be that, ideally it is myself who at this stage of life should be helping them, not vice versa. By no means am I whining, it is simply a statement of my dark and private solitary world, my truths and my reality. I am a firm believer in making everyday a special one in it's own way, even on the worst of days, to find the bright spots, be appreciative of them. I do wonder how many others are living the same kind of solitary existance due to the chronic pain disorder situations existing, and how they handle it, if there is something I am missing that I should be doing.