What would you do to manage a health condition?

ChemGal

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How much would you be willing to change in your life to manage a health condition?
I feel like I have made some pretty big changes.

I've watched the Frey Life youtube channel on and off. It follows a married couple and Mary has CF. They are (have? I'm not caught up) moving to North Carolina from the Boston area (I don't think they live right in Boston, but believe that's where her medical team is) as she is preparing for possible having a lung & liver transplant and if that happens it will be done at Duke. Instead of having to travel when she's extremely sick they have decided to move there to get set up, settled and getting the professional and non-professional support systems figured out while she is capable of staying at home and getting out of the house. I was a bit surprised to make such a move when coming from a place like Boston, but a big part of it is the rarity of doing the multiple organs and Duke has done the most lung-liver transplants.

I know of people who have refused to self-treat with the IV meds. I know myself I pushed myself too hard too long instead of giving up things I really enjoyed doing or that were important to me but there was a big switch when I went from "I feel super crappy" to "I feel super crappy and the probability of this killing me is way higher than what I thought based on my symptoms".

Are you a whatever it takes to care for myself? Or what's the line? Are there some things you would just refuse to do?
 

Lastpointe

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I haven’t seen that show you mentioned but that is definitely a big decision to move for your health

But I think I might do the same for an issue like you describe. It used to be that a job held you in one place. But now it is quite possible to live in one place and work remotely. Or even better, if you work for a big company, arrange to get transferred

Certainly there are a lot of pluses to living close to your doctors
 
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I would do whatever I could as long as it was possible, until my last breath, and fight for it to be possible if it wasn’t. A lot of people have to make huge adjustments, and they need support. Some people don’t have the social supports necessary to make adjustments and, obviously, I don’t think everybody has the choice to move to where they want or need to be. Two people with the same impairments could have completely different social and financial circumstances and supports - which makes their “disabilities” different. And that goes back to disability and assisted dying...because if you don’t have the same options as wealthier people then I can see why people would be forced (in their minds) to give up. And I think that’s a huge injustice, therefore, to have the medical model perspective of “disability” worded into the MAID laws.


It’s going to be my one of my main goals in life to see that changed - for the medical model to go the way of the dinosaur. I didn’t ask for it to be a goal of mine, but it is. I support every single effort to address ableism. The medical model is the biggest culprit contributing to it today.



:)
 
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ChemGal

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I would do whatever I could as long as it was possible, until my last breath, and fight for it to be possible if it wasn’t. A lot of people have to make huge adjustments, and they need support. Some people don’t have the social supports necessary to make adjustments and, obviously, I don’t think everybody has the choice to move to where they want or need to be. Two people with the same impairments could have completely different social and financial circumstances and supports - which makes their “disabilities” different. And that goes back to disability and assisted dying...because if you don’t have the same options as wealthier people then I can see why people would be forced (in their minds) to give up. And I think that’s a huge injustice, therefore, to have the medical model perspective of “disability” worded into the MAID laws.


It’s going to be my one of my main goals in life to see that changed - for the medical model to go the way of the dinosaur. I didn’t ask for it to be a goal of mine, but it is. I support every single effort to address ableism. The medical model is the biggest culprit contributing to it today.



:)
Isn't the medical model an important part of managing a health condition?
Where does something like self infusing fit in if the medical model is removed?
 
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Isn't the medical model an important part of managing a health condition?
Where does something like self infusing fit in if the medical model is removed?
Removal of the medical model of disability would not remove the expectation of diagnosis and treatment. It would shift the focus away from arbitrary standards of “normal” imposed by the medical community...which generates prejudice that becomes systemic as it merges into the administrative model. Here’s an article I was just reading. There are a few grammatical errors but the points are well made. Needing a support system for independence to achieve equal participation in society is not something people can seem to, or want to, get their heads around. Even though Canada, like the UK, signed onto it in international law.

 
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ChemGal

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Removal of the medical model of disability would not remove the expectation of diagnosis and treatment. It would shift the focus away from arbitrary standards of “normal” imposed by the medical community...which generates prejudice that becomes systemic as it merges into the administrative model. Here’s an article I was just reading. There are a few grammatical errors but the points are well made.

But much of treatment involves achieving normal levels. How do you know when a dosage is correct?
I don't see how a social model or an economic model without the medical model would allow me and many others to have a reasonable quality of life.
You're also putting all of this onto disability models - is that even where all medical conditions fit?
 
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But much of treatment involves achieving normal levels. How do you know when a dosage is correct?
I don't see how a social model or an economic model without the medical model would allow me and many others to have a reasonable quality of life.
It helps you achieve your optimum personal health. It doesn’t ameliorate discrimination or provide social supports even though you are doing the best you can do for your personal health. For my condition...there is nothing available that would make me “normal”, and that’s not what I and most people who’ve lived with disabilities want necessarily - I can only be my best, not somebody else’s best and/ or an arbitrary standard of best set by clinicians and bureaucrats. We want our needs met and to be simultaneously valued as equal human beings. I’m not saying we don’t need medicine. Nobody is saying that. They are saying we need a broader focus when looking at disability.
 
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ChemGal

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It helps you achieve your optimum personal health. It doesn’t ameliorate discrimination or provide social supports even though you are doing the best you can do for your personal health. For my condition...there is nothing available that would make me “normal”, and that’s not what me and most people who’ve lived with disabilities want necessarily - I can only be my best, not somebody else’s best and/ or an arbitrary standard of best set by clinicians and bureaucrats. We want our needs met and to be simultaneously valued as equal human beings. I’m not saying we don’t need medicine. Nobody is saying that. They are saying we need a broader focus when looking at disability.
And you're saying medicine isn't part of the medical model? If we scrap that entirely we're not getting rid of testing and medications? I don't follow how that is possible.
 
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And you're saying medicine isn't part of the medical model? If we scrap that entirely we're not getting rid of testing and medications? I don't follow how that is possible.
My god you are a black and white thinker...and I get accused of that! Sorry, it’s just frustrating because it should be obvious that the social model doesn’t erase medical testing, it takes the locus of control from doctors and administrators and puts it into the hands of people and society generally. It puts a different lens on the world.



:)
 

ChemGal

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My god you are a black and white thinker...and I get accused of that! Sorry, it’s just frustrating because it should be obvious that the social model doesn’t erase medical testing, it takes the locus of control from doctors and administrators and puts it into the hands of people and society generally. It puts a different lens on the world.



:)
You're the one who is thinking black and white here (and often times I find). Yes, there are bad things that come with the medical model, but there are also numerous good things.
An update where the bad is eliminated is useful. I think just scrapping everything that has come with the medical model would kill numerous people.
 
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No, the social model would be inclusive of medical needs while understanding that you don’t have to be “normal” to be an equal human being. There is no such thing as a universal normal. It means a doctor and/ or administrator (I think the medical and administative models go hand in hand and are dangerous).... can’t be the sole arbiter of what is normal, nor can they be the sole resource or dictator for directing people’s needs.




:)
 
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It’s already law. The social model is enshrined in law...except, oddly enough, in the assisted dying laws. And some other administrative policies like benefits. We have illegal policies in this country, according to international law. It was completely twisted and ploughed over in the process of drafting that specific piece of legislation...thanks to the short sightedness and ignorance of the well heeled death with dignity lobby and politicians administrators...and lawyers...with itchy palms. If we are going to have that for anybody but the very terminally ill, we should have it for everybody, or for nobody. It was not a victory it was a license to kill people who could be supported better...but that’s a bother. My mind has not changed and I have laid out the reasons.


The social model is just ignored in the red tape and because society is ignorant of it. Do you honestly think in all the years of fighting for equal rights, the people who defined the social model (people with various and multiple disabilities themselves, and their advocates) don’t think we need medicine?





:)
 
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Mendalla

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There is no such thing as a universal normal. It means a doctor and/ or administrator (I think the medical and administative models go hand in hand and are dangerous).... can’t be the sole arbiter of what is normal
In medicine, you need to define what is being fixed for the most part. For a correctable disability like my myopia or type 2 diabetes (and those are technically disabilities, since they would impair me if it weren't for the medical interventions), someone has to decide what level of correction to apply to my vision or what the target for my glucose should be, else there is no baseline for deciding what the medical intervention should be.

But I think I hear what you are saying. Those physical "normals" don't define a 'normal' human being, only a baseline for determining what medical interventions make sense. Perhaps medicine needs to stop talking about making people "normal" and talk about "achieving baseline physical parameters" or something, with the baseline being based on the person's starting levels. They can't "fix" your CP since it's your baseline, but if you develop type 2 diabetes, they can still use diet changes, drugs, etc. to help lower your glucose to safe levels so you don't develop problems due to that. The social model then deals with how to accommodate a diversity of baselines in society rather than looking at that diversity as a problem to be fixed.
 

ChemGal

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No, the social model would be inclusive of medical needs while understanding that you don’t have to be “normal” to be an equal human being. It means a doctor and/ or administrator (I think the medical and administative models go hand in hand and are dangerous).... can’t be the sole arbiter of what is normal, nor can they be the sole resource for directing people’s needs.
Medical model is the term coined by psychiatrist R. D. Laing in his The Politics of the Family and Other Essays (1971), for the "set of procedures in which all doctors are trained".[1] It includes complaint, history, physical examination, ancillary tests if needed, diagnosis, treatment, and prognosis with and without treatment.
The medical model has proven highly successful and even indispensable in many contexts; it is difficult to name a plausible alternative to medical diagnosis and treatment for a depressed skull fracture.
The medical model embodies basic assumptions about medicine that drive research and theorizing about physical or psychological difficulties on a basis of causation and remediation.
The medical model basically includes what is medicine. Not just on the basis of treating people, but all the stuff that has to happen before that as well.
 
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The medical model basically includes what is medicine. Not just on the basis of treating people, but all the stuff that has to happen before that as well.
Does it give them a roof over their head while they get their lab tests, go to their appointments, ‘get’ to their appointments, take their prescriptions, or people in their lives who care and provide them the assistance they need to be independent citizens (able to participate fully in civil society), not just make them a health consumer?


Prior to the movement toward greater integration of human rights and social models into laws and policies, ‘some’ people had the option of living with their families (which had social stigma for the parents, who maybe lacked the knowledge or interest in caring for them based on that stigma), or in institutions where only basic survival needs and medicine were provided (if that). Or, they died. They weren’t seen as worthy of anything beyond survival, and meant to feel they didn’t “deserve” it anyway. The medical model has been responsible for diminishing human beings down diagnoses and treatments. It has allowed for other forms of deadly discrimination...like socioeconomic barriers, neglect. Its standards determined what the baseline was worthy of having a life that one had a functional level of autonomy over (with or without help)...and we made a great deal of progress formally recognizing the UN Convention on the Rights of Persons With Disabilities. Policies and attitudes haven’t kept up. Unfortunately, medicine is not just a helpful service to humanity, as it should be - it’s become a locus of power over rights and freedoms, that negatively shapes attitudes. Just think about how many things depend on a doctor’s note or form where doctors have neither the insight nor the expertise in the full context of the situation (or the person).





:)
 
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In medicine, you need to define what is being fixed for the most part. For a correctable disability like my myopia or type 2 diabetes (and those are technically disabilities, since they would impair me if it weren't for the medical interventions), someone has to decide what level of correction to apply to my vision or what the target for my glucose should be, else there is no baseline for deciding what the medical intervention should be.

But I think I hear what you are saying. Those physical "normals" don't define a 'normal' human being, only a baseline for determining what medical interventions make sense. Perhaps medicine needs to stop talking about making people "normal" and talk about "achieving baseline physical parameters" or something, with the baseline being based on the person's starting levels. They can't "fix" your CP since it's your baseline, but if you develop type 2 diabetes, they can still use diet changes, drugs, etc. to help lower your glucose to safe levels so you don't develop problems due to that. The social model then deals with how to accommodate a diversity of baselines in society rather than looking at that diversity as a problem to be fixed.
So many factors go into achieving individually optimal baselines besides medicine, though. The social model looks at well-being and inclusion more holistically. Defining holistic as both of the following:


ho·lis·tic
/hōˈlistik/
adjective
  1. PHILOSOPHY
    characterized by comprehension of the parts of something as intimately interconnected and explicable only by reference to the whole.
    • MEDICINE
      characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease.
 

Mrs.Anteater

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To get back to the original question- on a personal level, we all/ or most of us know what we should be doing for our health- proper diet and exercising, regular check ups, stop smoking, enough sleep, relaxation, less stress.
Are we doing it?
I noticed that I need a certain amount of “ bio feedback” to give me enough success to keep up my daily exercise program. Six months ago, my trainer gave me some additional stretches using a roll to improve circulation. Doing the exercises either really hurt badly or did nothing at all. Any positive benefits would take 9-12 month of doing it daily to see results. I clearly could not stick to it. I need some immediate measurement to see positive change, which I can with my other exercises ( like doing them better, longer, with less pain etc.).
 

ChemGal

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I haven’t seen that show you mentioned but that is definitely a big decision to move for your health

But I think I might do the same for an issue like you describe. It used to be that a job held you in one place. But now it is quite possible to live in one place and work remotely. Or even better, if you work for a big company, arrange to get transferred

Certainly there are a lot of pluses to living close to your doctors
I certainly understand moving to be close to doctors, services, etc.
A move away from Boston though? Boston isn't exactly lacking in medical specialists, and Mary had a really good team there.
With the details explained it certainly made sense, but it really sounds like there is only one place that's ideal for the situation. A really rural area, or something more isolated like Alaska or Hawaii would come across as more expected.
 

ChemGal

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To get back to the original question- on a personal level, we all/ or most of us know what we should be doing for our health- proper diet and exercising, regular check ups, stop smoking, enough sleep, relaxation, less stress.
Are we doing it?
I noticed that I need a certain amount of “ bio feedback” to give me enough success to keep up my daily exercise program. Six months ago, my trainer gave me some additional stretches using a roll to improve circulation. Doing the exercises either really hurt badly or did nothing at all. Any positive benefits would take 9-12 month of doing it daily to see results. I clearly could not stick to it. I need some immediate measurement to see positive change, which I can with my other exercises ( like doing them better, longer, with less pain etc.).
I actually find some of this rather difficult to determine. Fish was brought up to Chemguy, never really specifically mentioned to me but it was in the old food guideline. I get an allergist who does tell me to go ahead with eating fish (although no recommendation like at least once/week( - and look what happens, he ends up concerned it could turn into a very serious situation.

Exercise is similarly complex - I'm left to figuring it out on my own. It has landed me in the emergency room in the past.
I've had a few weeks off of moderate intensity, everything has just been light. I'm in the process of having to find a new location that's suitable. For a few weeks just the light activity was leaving me feel quite a bit better. I noticed with my fitness tracker I was being active much moreso. I knew I needed to rest after moderate exercise, but it's difficult to know for more days than what I thought - is it just a fluke? Last few days I've been not doing so well, so it may have just been coincidental, or maybe the break really has been good for me and the last few days are just due to other triggers.

I don't consider the exercising I do to really be an extreme method of managing my illness. The sorting out a proper balance of long and short term health overall can be at times though.
 

Mrs.Anteater

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I actually find some of this rather difficult to determine. Fish was brought up to Chemguy, never really specifically mentioned to me but it was in the old food guideline. I get an allergist who does tell me to go ahead with eating fish (although no recommendation like at least once/week( - and look what happens, he ends up concerned it could turn into a very serious situation.

Exercise is similarly complex - I'm left to figuring it out on my own. It has landed me in the emergency room in the past.
I've had a few weeks off of moderate intensity, everything has just been light. I'm in the process of having to find a new location that's suitable. For a few weeks just the light activity was leaving me feel quite a bit better. I noticed with my fitness tracker I was being active much moreso. I knew I needed to rest after moderate exercise, but it's difficult to know for more days than what I thought - is it just a fluke? Last few days I've been not doing so well, so it may have just been coincidental, or maybe the break really has been good for me and the last few days are just due to other triggers.

I don't consider the exercising I do to really be an extreme method of managing my illness. The sorting out a proper balance of long and short term health overall can be at times though.
Oh,I am not saying you need to figure it all out yourself. But, we do know the direction and then we have to find the right person/ program to help us. Like I find there is plenty of physio services that don’t help at all, because they are very limited in their thinking/ basic service- you actually need to find a good one. But, that’s the case with everything. There are good and not so good auto mechanics, hairdressers, doctors.
 
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