| juliajubilada = julia retired |
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"I am not a disease"
Don't call me "differently abled. Differently abled from whom? Or what? No. "As a cripple, I swagger", "Some, unable to accept incurability, grasp at one treatment after another, no matter how bizarre" Yes! (Nancy Mairs, 1994 'On Being a Cripple')
I was diagnosed with rheumatoid arthritis at the age of 34. For the past 36 years, I've never known how to respond to the suggestions of well-meaning friends who send me press cuttings about new remedies and cures or tell me stories of diets and therapies that work like magic for someone they know. Yes I've tried:
Acupuncture, Homeopathy, Reflexology, Reiki, Thai Massage, Zero Balancing, Meditation, Chi Gung
Green lipped mussels, cod-liver oil, evening primrose oil, glucosamine, vinegar & honey, vitamins
Psychotherapy (individual and group), Orthopaedic Surgery, Physiotherapy, Occupational Therapy
Cutting out coffee, red wine, tomatoes, citrus fruits, spinach, dairy products, wheat, meat...
Aspirin, Marijuana, Sulphur, Ecstasy, Anti-inflammatories, Cortizone (steroids), Cocaine, Methotrexate, Opiates, Etanercept Injections Rituximab infusions
Swimming, Cycling, Walking, Sailing, Wind-surfing, Sex, Singing, Dancing, Gardening...
And what works? All of it. None of it. Just getting on and living with it. But the nearest thing to magic for me have been the etanercept injections. But they came too late to prevent the damage this disease has done to my hands, feet, ankles and elbows. And I'm now getting infusions of retuximab (2022) and will see what they do for me.
Don't call me "differently abled. Differently abled from whom? Or what? No. "As a cripple, I swagger", "Some, unable to accept incurability, grasp at one treatment after another, no matter how bizarre" Yes! (Nancy Mairs, 1994 'On Being a Cripple')
I was diagnosed with rheumatoid arthritis at the age of 34. For the past 36 years, I've never known how to respond to the suggestions of well-meaning friends who send me press cuttings about new remedies and cures or tell me stories of diets and therapies that work like magic for someone they know. Yes I've tried:
Acupuncture, Homeopathy, Reflexology, Reiki, Thai Massage, Zero Balancing, Meditation, Chi Gung
Green lipped mussels, cod-liver oil, evening primrose oil, glucosamine, vinegar & honey, vitamins
Psychotherapy (individual and group), Orthopaedic Surgery, Physiotherapy, Occupational Therapy
Cutting out coffee, red wine, tomatoes, citrus fruits, spinach, dairy products, wheat, meat...
Aspirin, Marijuana, Sulphur, Ecstasy, Anti-inflammatories, Cortizone (steroids), Cocaine, Methotrexate, Opiates, Etanercept Injections Rituximab infusions
Swimming, Cycling, Walking, Sailing, Wind-surfing, Sex, Singing, Dancing, Gardening...
And what works? All of it. None of it. Just getting on and living with it. But the nearest thing to magic for me have been the etanercept injections. But they came too late to prevent the damage this disease has done to my hands, feet, ankles and elbows. And I'm now getting infusions of retuximab (2022) and will see what they do for me.
Why take the drugs?
The consultant rheumatologist I saw recently reckons he won't be seeing hands like mine in 10 years time because this long term damage is from days when the drugs on offer (steroids, gold injections...) were often ineffective and had nasty side effects. That's why I kept trying all these "natural" remedies.
Recently I dislocated my shoulder and posed the question "Should I sue Screwfix?" for my fall in a little Youtube video. Apart from ethical, legal, medical and financial considerations, I didn't fill in their compensation claim form because I didn't want to have to answer questions about my (dis)abilities. For a couple of days after the fall I couldn't wipe my bum so I sent off for a bum-wiping gadget. Luckily for me, by the time it arrived I didn't need it any more. Meanwhile, I was blessed, like Jean Bailey-Dearing in her digital story about the dreaded bum-wiper, with a caring husband who spared me the trouble and humiliation.
Recently I dislocated my shoulder and posed the question "Should I sue Screwfix?" for my fall in a little Youtube video. Apart from ethical, legal, medical and financial considerations, I didn't fill in their compensation claim form because I didn't want to have to answer questions about my (dis)abilities. For a couple of days after the fall I couldn't wipe my bum so I sent off for a bum-wiping gadget. Luckily for me, by the time it arrived I didn't need it any more. Meanwhile, I was blessed, like Jean Bailey-Dearing in her digital story about the dreaded bum-wiper, with a caring husband who spared me the trouble and humiliation.
