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How do I find a good, medically qualified trainer/physical therapist for my cripple self.
jamesra
Chicago, ILRegistered User regular
Chicago, ILRegistered User regular
First, a brief primer which may be helpful (and this is a very, very pocket explanation, but I'm choosing brevity over accuracy; if I still run long I'm sorry. And I expect I will)
I'm sick. I have psoriatic arthritis, which can be a minor disorder, but if you are me is not. (and has very, very little in common with your (grand)parents arthritis, which is probably osteoarthritis and basically an entirely different disorder). Non-osteo arthritis (for the most part, rheumatoid and psoriatic, although there are others) are part of a cluster of autoimmune dysfunctions which typically strike between early puberty and the mid/late 20s, and also include diseases such as crohn's disease and ulcerative colitis. All are inflammatory, all run in families, and it isn't uncommon to have more than one; a cousin has crohn's, my aunt and my mom both have rheumatoid --my mom spent her last year of high school in bed, and took 9 years to finish undergrad because she basically woke up one morning and couldn't walk.
My disease, psoriasis, involves the immune system mistaking the skin for a foreign body and attacking it. The principle agent of this attack at are anti-cancer factors, specifically Tumor Necrosis Factor alpha (TNF-alpha). Untreated it results in painful scaly red/white patches patches on the skin and scalp --I had humiliating dandruff for years with few other symptoms -- that will easily bleed under mild pressure or distress, which they often experience since they also are agonizingly painful and itch like you wouldn't believe. As the disease evolves past its mild stages these lesions begin to bleed more or less constantly, it spreads from a few patches to more serious covering and starts to involve softer tissues, and in a substantial faction of patients the attack begins to expand to the joints.
I'm relatively lucky compared at least to my mother, in that we have reach a point where we have some ideas about how to treat this disorder and medications that can be targeted at TNF-alpha; with my mother the treatments were essentially expensive voodoo without the ritual or the reverence. Because my employment history has been typical of IT people of my generation, my insurance coverage has been spotty, but between 29-32 (I'm 36), I was very well controlled on Etanercept (Embrel). When I was 32 I was assaulted, sexually and otherwise and because this and the circumstances leading to it made my boss (an overly Christian smug prick) uncomfortable. I don't talk about this much, but: I have kinks, and my pursuit of them lead me into a trap, and I was held hostage and violated for eight hours.[1] It didn't sit well with Joe G. to have a pervert in his department, so he did everything possible to hustle me out and destroy my career. In both he succeeded; I doubt I'll ever get a professional job I don't give myself again. To one side, and (and this as my fault as much as anyone; I was pretty catatonic for a while and didn't fight Joe for my COBRA et. al.) my insurance was discontinued. My partner (now spouse) was and is all of kind, understanding, and a physician. But a monthly does of Enbrel ran/runs about $7000 a pop and even if I had had an understanding boss, we simply did not and do not make that kind of money. (And Enbrel is cheap, as these things go; the good stuff are all live biologic agents and they are crazy expensive).
Anyway, after getting off Enbel my disease blossomed like a really revolting flower. My dermatologist, who is an excellent person as well as an excellent physician did what he could to keep me supplied out of samples but I was on a high does and not the only patient. I wasn't enough to keep up and by the time I could get insurance that would cover the meds I needed, my body had learned to counter the Enbrel, and it was no longer effective. Since then it has been trial and mostly error. Remicade worked like a dream, but also sent me into catastrophic liver failure which meant a complete end to all treatments including, especially including, OTC anti-inflammatorys. But that is another tale, and this isn't James's Venting Hour, however much I might like that.
This is a lot of stuff leading up to a question, but it is important to me both as a mild venting exorcise and to avoid certain kinds of frustrating tedium. There is some reason, for example, to believe that diet can help with mild forms of my disorder. I've tried them all. And it isn't about will power, and like I said, this isn't grandma's disease. If I didn't think this forum could address this usefully, I wouldn't be asking here. But I want to hedge my bets.
---
Okay, all that said at revolting and embarrassing length, my basic problem is that I am fat and out of shape. Obviously that isn't all of my problem, but it hurts badly. My joints aren't in great shape and caring around an extra load doesn't help and atrophied musculature. I'm a walker. Some people run, or swim, or bike. I'm not opposed to any of these and the last has some apeal. But historically, I walk. It was my relaxation and my transportation and my meditation for most of my adult life and much of my childhood. When I was in San Francisco I would routinely walk from the BofA datacenter where I worked and 1S Van Ness to my home in the Outer Richmond --4 or 5 miles over hilly terrain. I wasn't a death march; I'd stop for a beer, or dinner or whatever. And in Chicago, it was much the same; I'd walk home from the look when ever I had the chance.
In those days, I was between 170 and 190 lbs (I'm about 5'10). These days I cannot walk any real distance; despite all the pain meds --and I take a great deal of pain medication -- walking hurts me. I'm closer to 250 now, and my muscles have atrophied besides. If I can get my body in better shape, build muscle mass and endurance I won't hurt as much. I'll stop crying when I try and walk up 3 flights of stares with a bag of groceries. And I would give anything to be able to take a walk again. Really anything. So. I need to lose weight, I need to build muscle and I need help to do it. High impact is obviously out, but swiming and biking both have potential. What I want is a physical training with enough medical background to understand my disease and my limits. I hired someone over the summer, and she was nice and encouraging and pushed me passed my pain and my limits and as a result I spent three weeks unable to do anything more than hobble. What I need is someone who is smart and determined and energetic, but who has enough of a medical background to help me without hurting me. I need someone who can call me on my bullshit when I'm feeling tired or out of sorts or lazy and using pain as an excuse but who also understands that pushing me to hard at the wrong time can destroy me. This is a crazy tall order so I'm reaching out to H&A, and I guess to PA as a whole. There is a huge knowledge base here, and I'm hoping that someone either knows Just The Person and can somehow get me in, or can give me good advice on what questions to ask. Because I have no idea and tend to be either over confrontational or over complaint and both get me in trouble. I don't even know how to swim (or where I might) so simply advice on good swim lessons or even where in Chicago I can go to swim; one of the cities open pools is of little help as they are almost all closed in the winter. I do drive, however which means that I can reach anything in the city. (I know that this isn't a Chicago site, but there are several other Chicagoans here, so I thought I might see what they say). FWIW, I'm in Hyde Park.
I'm sorry for using so much text, but I'd appreciate the help. I'm tired, almost beyond endurance and certainly beyond words of feeling myself and my body deteriorate. And I don't know what to do. I'm sure whatever I try will fail, but I have to try something. Thank you for your time.
[1] I never, ever, ever talk about this. Not because I don't want to, but because I'm so terrified of it being on the internet, which is how Joe found out. but fuck it. It IS on the internet, and there is something strangely soothing about just laying it out. Still, if you connect a, b, and c and figure which story in which local paper is me --and I haven't made it hard for you-- please suppress the urge to tell me what I should and shouldn't have done. But beyond that, thank you for taking the time to read this. I don't have a right to complain; I'm alive and I'm not yet dying in a gutter. But it is strangely liberating to say it, even if in a whisper.
I'm sick. I have psoriatic arthritis, which can be a minor disorder, but if you are me is not. (and has very, very little in common with your (grand)parents arthritis, which is probably osteoarthritis and basically an entirely different disorder). Non-osteo arthritis (for the most part, rheumatoid and psoriatic, although there are others) are part of a cluster of autoimmune dysfunctions which typically strike between early puberty and the mid/late 20s, and also include diseases such as crohn's disease and ulcerative colitis. All are inflammatory, all run in families, and it isn't uncommon to have more than one; a cousin has crohn's, my aunt and my mom both have rheumatoid --my mom spent her last year of high school in bed, and took 9 years to finish undergrad because she basically woke up one morning and couldn't walk.
My disease, psoriasis, involves the immune system mistaking the skin for a foreign body and attacking it. The principle agent of this attack at are anti-cancer factors, specifically Tumor Necrosis Factor alpha (TNF-alpha). Untreated it results in painful scaly red/white patches patches on the skin and scalp --I had humiliating dandruff for years with few other symptoms -- that will easily bleed under mild pressure or distress, which they often experience since they also are agonizingly painful and itch like you wouldn't believe. As the disease evolves past its mild stages these lesions begin to bleed more or less constantly, it spreads from a few patches to more serious covering and starts to involve softer tissues, and in a substantial faction of patients the attack begins to expand to the joints.
I'm relatively lucky compared at least to my mother, in that we have reach a point where we have some ideas about how to treat this disorder and medications that can be targeted at TNF-alpha; with my mother the treatments were essentially expensive voodoo without the ritual or the reverence. Because my employment history has been typical of IT people of my generation, my insurance coverage has been spotty, but between 29-32 (I'm 36), I was very well controlled on Etanercept (Embrel). When I was 32 I was assaulted, sexually and otherwise and because this and the circumstances leading to it made my boss (an overly Christian smug prick) uncomfortable. I don't talk about this much, but: I have kinks, and my pursuit of them lead me into a trap, and I was held hostage and violated for eight hours.[1] It didn't sit well with Joe G. to have a pervert in his department, so he did everything possible to hustle me out and destroy my career. In both he succeeded; I doubt I'll ever get a professional job I don't give myself again. To one side, and (and this as my fault as much as anyone; I was pretty catatonic for a while and didn't fight Joe for my COBRA et. al.) my insurance was discontinued. My partner (now spouse) was and is all of kind, understanding, and a physician. But a monthly does of Enbrel ran/runs about $7000 a pop and even if I had had an understanding boss, we simply did not and do not make that kind of money. (And Enbrel is cheap, as these things go; the good stuff are all live biologic agents and they are crazy expensive).
Anyway, after getting off Enbel my disease blossomed like a really revolting flower. My dermatologist, who is an excellent person as well as an excellent physician did what he could to keep me supplied out of samples but I was on a high does and not the only patient. I wasn't enough to keep up and by the time I could get insurance that would cover the meds I needed, my body had learned to counter the Enbrel, and it was no longer effective. Since then it has been trial and mostly error. Remicade worked like a dream, but also sent me into catastrophic liver failure which meant a complete end to all treatments including, especially including, OTC anti-inflammatorys. But that is another tale, and this isn't James's Venting Hour, however much I might like that.
This is a lot of stuff leading up to a question, but it is important to me both as a mild venting exorcise and to avoid certain kinds of frustrating tedium. There is some reason, for example, to believe that diet can help with mild forms of my disorder. I've tried them all. And it isn't about will power, and like I said, this isn't grandma's disease. If I didn't think this forum could address this usefully, I wouldn't be asking here. But I want to hedge my bets.
---
Okay, all that said at revolting and embarrassing length, my basic problem is that I am fat and out of shape. Obviously that isn't all of my problem, but it hurts badly. My joints aren't in great shape and caring around an extra load doesn't help and atrophied musculature. I'm a walker. Some people run, or swim, or bike. I'm not opposed to any of these and the last has some apeal. But historically, I walk. It was my relaxation and my transportation and my meditation for most of my adult life and much of my childhood. When I was in San Francisco I would routinely walk from the BofA datacenter where I worked and 1S Van Ness to my home in the Outer Richmond --4 or 5 miles over hilly terrain. I wasn't a death march; I'd stop for a beer, or dinner or whatever. And in Chicago, it was much the same; I'd walk home from the look when ever I had the chance.
In those days, I was between 170 and 190 lbs (I'm about 5'10). These days I cannot walk any real distance; despite all the pain meds --and I take a great deal of pain medication -- walking hurts me. I'm closer to 250 now, and my muscles have atrophied besides. If I can get my body in better shape, build muscle mass and endurance I won't hurt as much. I'll stop crying when I try and walk up 3 flights of stares with a bag of groceries. And I would give anything to be able to take a walk again. Really anything. So. I need to lose weight, I need to build muscle and I need help to do it. High impact is obviously out, but swiming and biking both have potential. What I want is a physical training with enough medical background to understand my disease and my limits. I hired someone over the summer, and she was nice and encouraging and pushed me passed my pain and my limits and as a result I spent three weeks unable to do anything more than hobble. What I need is someone who is smart and determined and energetic, but who has enough of a medical background to help me without hurting me. I need someone who can call me on my bullshit when I'm feeling tired or out of sorts or lazy and using pain as an excuse but who also understands that pushing me to hard at the wrong time can destroy me. This is a crazy tall order so I'm reaching out to H&A, and I guess to PA as a whole. There is a huge knowledge base here, and I'm hoping that someone either knows Just The Person and can somehow get me in, or can give me good advice on what questions to ask. Because I have no idea and tend to be either over confrontational or over complaint and both get me in trouble. I don't even know how to swim (or where I might) so simply advice on good swim lessons or even where in Chicago I can go to swim; one of the cities open pools is of little help as they are almost all closed in the winter. I do drive, however which means that I can reach anything in the city. (I know that this isn't a Chicago site, but there are several other Chicagoans here, so I thought I might see what they say). FWIW, I'm in Hyde Park.
I'm sorry for using so much text, but I'd appreciate the help. I'm tired, almost beyond endurance and certainly beyond words of feeling myself and my body deteriorate. And I don't know what to do. I'm sure whatever I try will fail, but I have to try something. Thank you for your time.
[1] I never, ever, ever talk about this. Not because I don't want to, but because I'm so terrified of it being on the internet, which is how Joe found out. but fuck it. It IS on the internet, and there is something strangely soothing about just laying it out. Still, if you connect a, b, and c and figure which story in which local paper is me --and I haven't made it hard for you-- please suppress the urge to tell me what I should and shouldn't have done. But beyond that, thank you for taking the time to read this. I don't have a right to complain; I'm alive and I'm not yet dying in a gutter. But it is strangely liberating to say it, even if in a whisper.
"Everything in war is very simple, but the simplest thing is difficult. The difficulties accumulate and end by producing a kind of friction. . . . This tremendous friction . . . is everywhere in contact with chance, and brings about effects that cannot be measured, just because they are largely due to chance" Carl Von Clausezwitz. (1832),
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What you have to realize is that some food may not be good for you. I don't mean to go full on vegan, but really see what food has an affect on your well being.
Is walking so bad that you can't do it? That must be rough.