bradlee
New Member
Hi my friends I am here because I am - quite frankly - fed up with my hematologist caregiver that i've been seeing at home here in NJ since i moved back from FL 2 years ago.
I'm 25 year old male making barely 35k a year - living at home - but working just mainly to pay my health insurance bills copays etc.
I also have paid close to 10,000$+ in court fees over a DUI where I did not have a breathalizer - but was arrested solely because an officer claimed my 'eyes were red' i was young - targeted - hired a really bad lawyer and got butt-___d . It's ok! it's over mostly.
The problem is I have this medical condition called Severe Chronic Neutropenia. It has no cure, no medications specifically targeted towards treating it, and it is probably not going to go away i've had it my whole life but didn't start getting sick till I was 16.
I'm not a dr. but basically what I have is very similar to HIV/AIDS or Cancer. While not quite as awful as those two and despite the fact i try to live my life as a healthful person or be a "victim" of it - it can really suck sometimes.
Something as simple as accidentally biting my lip while chewing will result in my getting a giant-ass legion on my lip that will within 12 hours morph into something worse-looking than herpes (no joke) i'll get a fever and feel like complete crap. then the dr's will put me on antibiotics or antivirals and steroids. if those don't work they will give me Nupagen (GCSF) or NULASTA which is same thing but supposed to work longer.
I am healthful about 50% of the time the other 50% it can be anywhere from complete agony to "take a few advil and deal with the day." I also have been self medicating with marijuana since 18. Not for the reasons you'd probably think. But before I was self using marijuana I had dr's that had me on :
Vioxx (been recalled)
Oxycontin
Hydrocodone
Morphine
so obviously i'm lucky to have been opiate free for almost 3 years and i pray to god i can stay that way because those medicines almost wrecked my life.
I have not done any narcotic drugs / pills / club drugs and I even gave up cigarettes and alcohol for the last 3 years as well.
I still however use marijuana for self medication when I am not feeling "well" The problem I incurr is
1) extremely expensive where I live
2) completely illeagel where i live
3) pre employment screenings are a nightmare
Based on these reasons - and granted that I have 15+ years of medical records documenting my 27+ some hospitalizations and tons of dr. visits that all point to no avail.
the thing i don't get is that Marinol is given to patients receiving GCSF (or Nupagen Nulasta) during their treatment. the same exact stuff I have to get 3-4x a year and the only difference is that no doctor knows anything about mine and the cancer specialists i always end up seeing are very judgemental and dismissive when i explain to them I would rather take canniboids than opiates and other narcotics.
I am willing to relocate to another state if that's what I have to end up doing to find a legitimate doctor that actually is willing to assess my situation. I asked my hematologist last month and he said "Marinol is ONLY for people with severe cancer and HIV." I am not a drug seeker and I think my request for a marinol rx was reasonable but he was very rude and judgemental towards me after that - ending our session abruptly and rudely afterwards.
Any ideas guys? I kind of feel like i'm in a pit here.
I'm 25 year old male making barely 35k a year - living at home - but working just mainly to pay my health insurance bills copays etc.
I also have paid close to 10,000$+ in court fees over a DUI where I did not have a breathalizer - but was arrested solely because an officer claimed my 'eyes were red' i was young - targeted - hired a really bad lawyer and got butt-___d . It's ok! it's over mostly.
The problem is I have this medical condition called Severe Chronic Neutropenia. It has no cure, no medications specifically targeted towards treating it, and it is probably not going to go away i've had it my whole life but didn't start getting sick till I was 16.
I'm not a dr. but basically what I have is very similar to HIV/AIDS or Cancer. While not quite as awful as those two and despite the fact i try to live my life as a healthful person or be a "victim" of it - it can really suck sometimes.
Something as simple as accidentally biting my lip while chewing will result in my getting a giant-ass legion on my lip that will within 12 hours morph into something worse-looking than herpes (no joke) i'll get a fever and feel like complete crap. then the dr's will put me on antibiotics or antivirals and steroids. if those don't work they will give me Nupagen (GCSF) or NULASTA which is same thing but supposed to work longer.
I am healthful about 50% of the time the other 50% it can be anywhere from complete agony to "take a few advil and deal with the day." I also have been self medicating with marijuana since 18. Not for the reasons you'd probably think. But before I was self using marijuana I had dr's that had me on :
Vioxx (been recalled)
Oxycontin
Hydrocodone
Morphine
so obviously i'm lucky to have been opiate free for almost 3 years and i pray to god i can stay that way because those medicines almost wrecked my life.
I have not done any narcotic drugs / pills / club drugs and I even gave up cigarettes and alcohol for the last 3 years as well.
I still however use marijuana for self medication when I am not feeling "well" The problem I incurr is
1) extremely expensive where I live
2) completely illeagel where i live
3) pre employment screenings are a nightmare
Based on these reasons - and granted that I have 15+ years of medical records documenting my 27+ some hospitalizations and tons of dr. visits that all point to no avail.
the thing i don't get is that Marinol is given to patients receiving GCSF (or Nupagen Nulasta) during their treatment. the same exact stuff I have to get 3-4x a year and the only difference is that no doctor knows anything about mine and the cancer specialists i always end up seeing are very judgemental and dismissive when i explain to them I would rather take canniboids than opiates and other narcotics.
I am willing to relocate to another state if that's what I have to end up doing to find a legitimate doctor that actually is willing to assess my situation. I asked my hematologist last month and he said "Marinol is ONLY for people with severe cancer and HIV." I am not a drug seeker and I think my request for a marinol rx was reasonable but he was very rude and judgemental towards me after that - ending our session abruptly and rudely afterwards.
Any ideas guys? I kind of feel like i'm in a pit here.
