No, I'm not returning to blogging. At least not yet. I'm still far too ill (though slightly better than I was when last I posted). But I have been doing a little housekeeping off and on over the last year. Several months ago I put every one of the 500+ posts into draft status until I had time to sort through them all and decide what I might want to keep. More recently I chose to return to published status many of my "greatest hits" so that anyone new stopping by had an idea of what this blog -- and me, to some extent -- have been about. A couple of posts were re-published as if I had only just published them rather than simply returned them to the state in which they had already been, perhaps causing some confusion with RSS feeds. I do apologize.
Most of all, I hope you have been well, dear reader. I have missed you and hope I may return soon.
Thursday, January 23, 2014
Tuesday, November 08, 2011
Imagine...
(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning on the occasion of a letter-writing campaign to NIH Director Francis Collins to increase funding for ME/CFS research.)
Dear Dr Collins,
I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse.
Now imagine that flu never goes away.
Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room.
Now imagine you have that hangover all the time.
Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.
Now imagine having jet lag every day.
Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.
Now imagine that burning pain for years without end.
Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.
If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.
You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.
You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.
Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.
When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.
When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.
At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).
While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?
$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).
This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...
You would want someone to help you if you had this disease, wouldn’t you?
Thank you for taking a moment to imagine what my life is like.
Sincerely, etc.
(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)
(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)
Dear Dr Collins,
I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse.
Now imagine that flu never goes away.
Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room.
Now imagine you have that hangover all the time.
Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.
Now imagine having jet lag every day.
Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.
Now imagine that burning pain for years without end.
Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.
If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.
You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.
You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.
Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.
When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.
When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.
At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).
While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?
$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).
This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...
You would want someone to help you if you had this disease, wouldn’t you?
Thank you for taking a moment to imagine what my life is like.
Sincerely, etc.
(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)
(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)
Saturday, October 30, 2010
How sexism gave men a "woman's disease"
There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too. And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments section to this post by Cort Johnson. In his post, Johnson details the connection between disorders predominately/exclusively affecting women and the remarkable chance it’s a disorder at the bottom of the NIH research funding barrel -- ME/CFS included. A number of men took offense at Johnson labeling their illness a "woman's disease."
Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.
So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.
If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.
Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.
__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.
Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating.
Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.
So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.
If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.
Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.
__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.
Friday, September 04, 2009
The ME/CFS advocacy conundrum
A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.
However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.
Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.
MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.
Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.
The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.
And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.
My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.
I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.
It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.
Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.
____________________
*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.
However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.
Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.
MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.
Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.
The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.
And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.
My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.
I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.
It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.
Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.
____________________
*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.
Thursday, September 06, 2007
Cousins among the medically oppressed
Campaign to recognise dangers of mental illness - Independent Online Edition > Health Annotated
Actually, those figures from the Australian study are horrifying for someone with ME/CFIDS, a disease that some still consider to be a psychiatric illness. Like this bastard (who you will note I mentioned with some derision in the post on the Georgia prevalence figures), who heads the primary care clinic for ME/CFIDS in the UK and believes that wheelchairs and handicapped parking permits shouldn't be given to people with ME/CFIDS because it will create "dependence." Or that people with ME/CFIDS do not have neuropathic pain, gastrointestinal symptoms, and chemical sensitivities. Because, you know, we're mentally ill, not physiologically. Seriously, I can't believe this is STILL going on but I read the linked article today, which deals with the discussions concerning the recent guidelines the British National Health Service (NHS) put together for physicians regarding ME/CFIDS. Grrr...
In an online group about ME/CFIDS that I read sometimes, someone posted a few months back about how even though our disease is not one of mental illness, the language a lot of us use regarding mental illness is often highly derogatory. Mental illness is very real, even if physicians use psychology to invalidate our suffering. I thought it was an important point. I don't want to be diagnosed with depression because it's incorrect, not because I dislike the diagnosis.
And how many of us have, say, heart disease but it's missed because doctors think we, like patients with mental illness, are just hysterical and need a bottle of Prozac and a shrink? Instead of pushing the mentally ill away as far as possible from us, we should be embracing them as our cousins among the medically oppressed.
Um, ya think?Stigma also played a part in denying mental patients treatment for physical illness. An Australian study found mental patients with heart disease were less than half as likely to receive surgery for their condition and were 80 per cent more likely to die from it than unaffected patients.
"We have missed these links [between mental and physical health]. Without them we fail to capture the full impact of mental illness," Professor Prince said.
Actually, those figures from the Australian study are horrifying for someone with ME/CFIDS, a disease that some still consider to be a psychiatric illness. Like this bastard (who you will note I mentioned with some derision in the post on the Georgia prevalence figures), who heads the primary care clinic for ME/CFIDS in the UK and believes that wheelchairs and handicapped parking permits shouldn't be given to people with ME/CFIDS because it will create "dependence." Or that people with ME/CFIDS do not have neuropathic pain, gastrointestinal symptoms, and chemical sensitivities. Because, you know, we're mentally ill, not physiologically. Seriously, I can't believe this is STILL going on but I read the linked article today, which deals with the discussions concerning the recent guidelines the British National Health Service (NHS) put together for physicians regarding ME/CFIDS. Grrr...
In an online group about ME/CFIDS that I read sometimes, someone posted a few months back about how even though our disease is not one of mental illness, the language a lot of us use regarding mental illness is often highly derogatory. Mental illness is very real, even if physicians use psychology to invalidate our suffering. I thought it was an important point. I don't want to be diagnosed with depression because it's incorrect, not because I dislike the diagnosis.
And how many of us have, say, heart disease but it's missed because doctors think we, like patients with mental illness, are just hysterical and need a bottle of Prozac and a shrink? Instead of pushing the mentally ill away as far as possible from us, we should be embracing them as our cousins among the medically oppressed.
Friday, May 11, 2007
The gifts of illness
It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick.
My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.
An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.
I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.
It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.
I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.
I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.
My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.
I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.
I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...
Obviously, there are some personality qualities that have been enhanced through illness including:
I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.
I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.
I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.
I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.
Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.
Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!
Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.
Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.
My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.
An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.
I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.
It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.
I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.
I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.
My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.
I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.
I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...
Obviously, there are some personality qualities that have been enhanced through illness including:
I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.
I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.
I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.
I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.
Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.
Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!
Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.
Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.
Friday, December 29, 2006
Feast of the Sacrifice
So the US and its puppet in Baghdad are celebrating a twisted form of Eid al-Adha today by sacrificing that most flawed and defective animal, Saddam Hussein, to the god of whatever the hell Bush et al. are trying to do in Iraq (securing oil revenues? a Pax Americana Empire?).
I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit.
So then, why do I feel like crying?
A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I.
No, it's not sympathy for him that has me here on the brink of tears. It's that this doesn't feel at all like justice. He will not have to stand trial now for his most heinous crimes. Iraqis will not have the chance, like South Africans did, for truth and reconciliation. There will be no reconciliation among Kurds, Shia, and Sunni, only throat-slitting, bullet-riddled civil war. The truth about US involvement in Halabja, as Robert Fisk explains, will not come out.
On Christmas my mother invited, among others, a loud, opinionated fundamentalist conservative who I had the discomfort (literally -- I could barely move my arms to my mouth!) of sitting next to. He went off on several issues, most of which demonstrated veiled misogyny and homophobia that I just sort of ignored. But then he got around to Iraq and how they attacked us first, blah, blah, remarkably stupid blah. Often I just don't bother much with people like him because he clearly doesn't know anything, even though he thinks he knows everything, and there's not really much point. Yet Monday I found myself just going off on what we've done to Iraq and it's all well and good that we can sit at a table stuffed full from a large meal (or not -- my mother is not known for her culinary skills) and calmly discuss Iraq while Iraqis are dying every day and without electricity and water. He, of course, believed he was an expert on Islam and went home smugly satisfied that Muslims are evil and blowing the shit out of them is a good, Christian thing to do.
Later I sat with myself for a bit to observe why I went off. Why I let him get to me when people such as he usually don't. Some of it had to do with my lack of any authority now because of illness. I have very little voice anymore. I spend most of my interaction with people in a sort of subordinate position -- the patient -- rather than a more authoritative or even equal position. But that's a meditation for another post. What a lot of it came down to was my anguish over the sheer horror of knowing what has been, is, and will happen in Iraq.
Between 1 and 1.5 million Iraqis died during the sanctions regime (yet one more on the list of horrible crimes for which Hussein is now confronting his maker). I remember protesting and weeping during the nineties. During a course on genocides, I talked my small group into using the US-mandated UN sanctions as our example of a form of genocide. My anguish then regarding the Clinton administration's policies seemed as grave as it could get.
Then came the war. At least 655,000 more Iraqis have died than would have had we not invaded Iraq. This now means approximately 2 million Iraqis have died directly because of our actions, and three million are homeless.
Now consider the fact that Iraq has about not quite 30 million people. Ten percent of the entire population is homeless -- thirty Hurricane Katrinas, if you will -- and just under that have died because of United States. While we keep going on about the 3000 who died on September 11 -- and make no mistake, it was indeed a great tragedy -- imagine if 20 million Americans died. And for...what? For what great cause have so many children, so many fathers and sons, daughters and mothers been sacrificed to Molech and Iraq turned into a smoldering hell?
Yes, this is the twisted American feast of sacrifice: our sacrificial tyrant surrounded by bullet-ridden bodies and refugees.
I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit.
So then, why do I feel like crying?
A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I.
No, it's not sympathy for him that has me here on the brink of tears. It's that this doesn't feel at all like justice. He will not have to stand trial now for his most heinous crimes. Iraqis will not have the chance, like South Africans did, for truth and reconciliation. There will be no reconciliation among Kurds, Shia, and Sunni, only throat-slitting, bullet-riddled civil war. The truth about US involvement in Halabja, as Robert Fisk explains, will not come out.
Who encouraged Saddam to invade Iran in 1980, which was the greatest war crime he has committed for it led to the deaths of a million and a half souls? And who sold him the components for the chemical weapons with which he drenched Iran and the Kurds? We did. No wonder the Americans, who controlled Saddam's weird trial, forbad any mention of this, his most obscene atrocity, in the charges against him. Could he not have been handed over to the Iranians for sentencing for this massive war crime? Of course not. Because that would also expose our culpability.When Hussein was first found guilty back in November, Fisk asked "Have ever justice and hypocrisy been so obscenely joined?" Now that Saddam Hussein is dead, the justice part feels missing and I think it was the last sentence of his article today that explains why: "But we will have got away with it."
On Christmas my mother invited, among others, a loud, opinionated fundamentalist conservative who I had the discomfort (literally -- I could barely move my arms to my mouth!) of sitting next to. He went off on several issues, most of which demonstrated veiled misogyny and homophobia that I just sort of ignored. But then he got around to Iraq and how they attacked us first, blah, blah, remarkably stupid blah. Often I just don't bother much with people like him because he clearly doesn't know anything, even though he thinks he knows everything, and there's not really much point. Yet Monday I found myself just going off on what we've done to Iraq and it's all well and good that we can sit at a table stuffed full from a large meal (or not -- my mother is not known for her culinary skills) and calmly discuss Iraq while Iraqis are dying every day and without electricity and water. He, of course, believed he was an expert on Islam and went home smugly satisfied that Muslims are evil and blowing the shit out of them is a good, Christian thing to do.
Later I sat with myself for a bit to observe why I went off. Why I let him get to me when people such as he usually don't. Some of it had to do with my lack of any authority now because of illness. I have very little voice anymore. I spend most of my interaction with people in a sort of subordinate position -- the patient -- rather than a more authoritative or even equal position. But that's a meditation for another post. What a lot of it came down to was my anguish over the sheer horror of knowing what has been, is, and will happen in Iraq.
Between 1 and 1.5 million Iraqis died during the sanctions regime (yet one more on the list of horrible crimes for which Hussein is now confronting his maker). I remember protesting and weeping during the nineties. During a course on genocides, I talked my small group into using the US-mandated UN sanctions as our example of a form of genocide. My anguish then regarding the Clinton administration's policies seemed as grave as it could get.
Then came the war. At least 655,000 more Iraqis have died than would have had we not invaded Iraq. This now means approximately 2 million Iraqis have died directly because of our actions, and three million are homeless.
Now consider the fact that Iraq has about not quite 30 million people. Ten percent of the entire population is homeless -- thirty Hurricane Katrinas, if you will -- and just under that have died because of United States. While we keep going on about the 3000 who died on September 11 -- and make no mistake, it was indeed a great tragedy -- imagine if 20 million Americans died. And for...what? For what great cause have so many children, so many fathers and sons, daughters and mothers been sacrificed to Molech and Iraq turned into a smoldering hell?
Yes, this is the twisted American feast of sacrifice: our sacrificial tyrant surrounded by bullet-ridden bodies and refugees.
Subscribe to:
Posts (Atom)