A rambling train of thoughts about the universe and our micro solar system consisting of our dear Sun and other planets in a magnetic dance while we hurtle through space on the face of a rock and stare at flat screens where we attempt to connect while we detach.
My comments on Multiple Sclerosis and the Big Picture
Thanks for summarizing the current fee schedule for MS DMT meds in the USA and UK.
As a patient, and former neurological nurse in the 1980’s, Before all these drugs,
I appreciate having any one of them. They are all better that the way it used to be, The Dwindling Steady Dive into Nothingness. Now at least I am Less Disabled by Fatigue, Pain, And an Aging body.
But Multiple Sclerosis has so many more layers than keeping me going with a daily shot costing $60-80 Thousand Dollars a year. I want more than the pat on the back I can do the Ten Peg test or the 25 foot dash. A Psychologist referral Nobody calls me back to schedule. The PT/OT exercise pamphlets sitting on my dresser, the Pain I cannot treat with THC because I don’t live in the right state, the secret Hell my husband sees but no one else does. The pile of paperwork I have to fill out to say I can’t, I can’t, I can’t. The neurologist says, You’re doing pretty well. My insistence that Gadolinium contrast, injected over and over, accumulated in every cell in my body and I only get skeptical glances (don’t groan, please). The MRI’s that look like Swiss Cheese And Doctor says, You’re doing pretty well. I say all this because I want the Big Quality of Life Study. The Big Risk/Cost vs. outcome analysis. The Long Term Study, Lifetime, even. My Total history, bad habits and all. I want My chart of My Daily Life, My Husband’s Too, to be analyzed so My Neuro Team can See, in a snapshot, anytime, more than my easily said “i’m fine” in my 6 month clinic visits. I want more for all the young people who don’t understand how or why take DMT’s, or that their struggles may or may not be blamed on the MonSter I know so intimately, from being a Caregiver and being cared for. I hope this makes sense.
As a patient, and former neurological nurse in the 1980’s, Before all these drugs,
I appreciate having any one of them. They are all better that the way it used to be, The Dwindling Steady Dive into Nothingness. Now at least I am Less Disabled by Fatigue, Pain, And an Aging body.
But Multiple Sclerosis has so many more layers than keeping me going with a daily shot costing $60-80 Thousand Dollars a year. I want more than the pat on the back I can do the Ten Peg test or the 25 foot dash. A Psychologist referral Nobody calls me back to schedule. The PT/OT exercise pamphlets sitting on my dresser, the Pain I cannot treat with THC because I don’t live in the right state, the secret Hell my husband sees but no one else does. The pile of paperwork I have to fill out to say I can’t, I can’t, I can’t. The neurologist says, You’re doing pretty well. My insistence that Gadolinium contrast, injected over and over, accumulated in every cell in my body and I only get skeptical glances (don’t groan, please). The MRI’s that look like Swiss Cheese And Doctor says, You’re doing pretty well. I say all this because I want the Big Quality of Life Study. The Big Risk/Cost vs. outcome analysis. The Long Term Study, Lifetime, even. My Total history, bad habits and all. I want My chart of My Daily Life, My Husband’s Too, to be analyzed so My Neuro Team can See, in a snapshot, anytime, more than my easily said “i’m fine” in my 6 month clinic visits. I want more for all the young people who don’t understand how or why take DMT’s, or that their struggles may or may not be blamed on the MonSter I know so intimately, from being a Caregiver and being cared for. I hope this makes sense.