Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Hi , Yes, yes, and more " yes. " Right now, as a matter of fact, I'm trying to write a letter to the doctor I haven't been able to see in something like three years. All because of money and circumstance and the list of things I've had the odd curiosity to have survived in these past few years (and to what end? she asks when she gets really down). But I'm digressing too, I see.... I'm trying to write this letter to the doc to summarize what's going on with me and to tell him what I've found by research. Of course, the way things are going, I'll never be able to get in to see him again, anyway, ever. Sometimes I feel like it might be more useful to write a last will and testament -- except there's not a helluva lot left to will anyone, if you know what I mean. I'm trying to work up (in the letter) to telling him that I believe I have this ME beast, the myalgic encephalomyelitis beast. All of what's wrong with me fits the myelin picture -- except those few things that are explained by what I already know I have wrong (disk rupture, osteoporosis, hypothyroid). It's not chronic fatigue syndrome. It's not even fibromyalgia, for which he was treating me. It's the bigger picture -- the ME picture. I'd swear on a stack of bibles. (And that's saying a lot for me because I'm no bible person!) But this medical establishment over here (US), not to mention the entire governmental functioning body, is such a load of b.s....pardon my french. Well, it's just depressing as all get-out to try to help yourself (since no one else is likely to). Can you tell me the four supplements you discovered, ? Sorry...I didn't mean to bend your ear too. Give your puppy-dog a pat for me. Ten years ago I had six puppy-dogs! Down to the last stalwart canine critter here now.... somewhere in IL > > Hi , > > I know exactly what you mean and I agree with you, it is quite awful > what being disabled for ten years (esp with a 'controversial' > illness) will do to your credit rating, not to mention your whole > life. > > The only thing that surprises me is; that there is anyone who has had > this type of chronic debilitating disease for a length of time, who > can still afford to pay for a private doctor, or afford any kind of > fancy expensive protocol; or even eat organic fruit and vegetables - > well I know I can't. > > I have found out about four exciting new supplements by following up > information I have received since joining this group. > I cleaned myself right out buying the first one; hopefully it is the > most important, because now I will have to wait and see. > Because if my UK national health service ME specialist can't or won't > prescribe them........then they will have to wait until next year. > > If you are wondering if I might be exaggerating; I cant disclose the > size of my debts obviously, but I can tell you that they are very > scary and my household budget, for all groceries (including feeding > my welsh border collie dog); is a maximum of £21.00 per week. > > I am very lucky, in that there is still a national health service > over here at all,(even if it may only be paying lip service to > helping people with diseases like ours); > and that I have paid my national insurance dues all my life before I > was sick; so now at least I can claim incapacity benefit; and I dont > have to find more cash to get the pain medicines prescribed by my NHS > GP. > > I think there are a great many people out there who are so much worse > off than I am, > and at least (so far) I still have my computer and access to the > internet, the majority are not so fortunate I am certain. > > What makes me cross, though, is that I feel very badly stigmatised > now I have been stuck with this extremely biased and > inappropriate `CFS' label. > > Considering I am now housebound and have had my whole life wrecked by > this illness, I feel very angry and humiliated when I have to endure, > time and time again, the sneering attitude of so many NHS medical > personnel; who appear to find my situation trivial or even highly > amusing, because they have been totally misinformed about the true > nature of this illness and how serious it is. > > This gross mistreatment and rudeness adds to my already considerable > suffering and distress, and along with my cognitive difficulties > makes it doubly difficult to get the kind of practical help I that I > badly need. > > I ramble. I apologise. > > all the best > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Ramble on, Sometimes it is just good to vent. Gail wrote: > Hi , > > I know exactly what you mean and I agree with you, it is quite awful > what being disabled for ten years (esp with a 'controversial' > illness) will do to your credit rating, not to mention your whole > life. > > The only thing that surprises me is; that there is anyone who has had > this type of chronic debilitating disease for a length of time, who > can still afford to pay for a private doctor, or afford any kind of > fancy expensive protocol; or even eat organic fruit and vegetables - > well I know I can't. > > I have found out about four exciting new supplements by following up > information I have received since joining this group. > I cleaned myself right out buying the first one; hopefully it is the > most important, because now I will have to wait and see. > Because if my UK national health service ME specialist can't or won't > prescribe them........then they will have to wait until next year. > > If you are wondering if I might be exaggerating; I cant disclose the > size of my debts obviously, but I can tell you that they are very > scary and my household budget, for all groceries (including feeding > my welsh border collie dog); is a maximum of £21.00 per week. > > I am very lucky, in that there is still a national health service > over here at all,(even if it may only be paying lip service to > helping people with diseases like ours); > and that I have paid my national insurance dues all my life before I > was sick; so now at least I can claim incapacity benefit; and I dont > have to find more cash to get the pain medicines prescribed by my NHS > GP. > > I think there are a great many people out there who are so much worse > off than I am, > and at least (so far) I still have my computer and access to the > internet, the majority are not so fortunate I am certain. > > What makes me cross, though, is that I feel very badly stigmatised > now I have been stuck with this extremely biased and > inappropriate `CFS' label. > > Considering I am now housebound and have had my whole life wrecked by > this illness, I feel very angry and humiliated when I have to endure, > time and time again, the sneering attitude of so many NHS medical > personnel; who appear to find my situation trivial or even highly > amusing, because they have been totally misinformed about the true > nature of this illness and how serious it is. > > This gross mistreatment and rudeness adds to my already considerable > suffering and distress, and along with my cognitive difficulties > makes it doubly difficult to get the kind of practical help I that I > badly need. > > I ramble. I apologise. > > all the best > > > > > > > >> >>> When I said I hadn't " used plastic in many years " I was >>> > referring > >> to >> >>> using plastic charge cards -- nothing at all to do with plastic >>> versus glass containers. I don't charge things onto a plastic >>> >> charge >> >>> card -- I generally shop locally, directly and in person. >>> >>> >>> >>> Oh, thats great if it works for you, I can't afford not to shop >>> >> at the discount online vite places and the things that help me most >> > I > >> couldn't get here locally anyway. Course with Swansons or any other >> mail order you can always mail a check in with your order too, you >> don't need to use 'plastic'. >> >>> [...] >>> Marcia >>> >>> >>> > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
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