Note: Ash's Advice is written by, me, Ash, a long-time patient with ME/CFS, FMS, Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings; a series of letters to my younger self, and to anyone suffering through the "living death" that is… Continue reading Ash’s Advice: Part 3 – On Doctors
"How do you do it?" she asked. "Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?" It is a question I get asked often, and there are a number of answers. First, a rundown of… Continue reading “How Do You Do It?”
I've had the great blessing to meet (online) a lot of ME/CFS and Lyme/TBD (Tick-Borne Disease) patients. Many have become friends. I believe, taken as a whole, that this patient group has got to be the most medically-literate patient group around. We have to be. There are few doctors who have a clue what these… Continue reading Risky Decisions, or, Valcyte: the Very Scary Adventure Ends
Last week, I saw my LLMD (Lyme Literate MD) again, and left after spending an hour with her, in shock & dismay. Where neither my PCP or neurologist have any ideas really where else to go with my deteriorating health, other than the "band-aid" approach - treating the symptoms as best we can - my… Continue reading Shock and Dismay: Re-visting Tick-Borne Diseases
My mother said to me the other day that my brother can't seem to wrap his mind around the concept that I'm really sick and there's really very little that can be done about it. He seems to still think that "if I only went to better doctors or the right hospital, they could figure… Continue reading We Know the Enemy, or ME/CFS/FMS Explained Again.
Standing naked, I gaze into the mirror. So many changes have happened to my body, I barely recognize the person who stares out at me. Time and illness have taken their toll. I will be 48 years old this month. Late forties. Almost fifty. My mind struggles to wrap itself around the concept. There is… Continue reading The Stranger In The Mirror