Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Thursday, February 09, 2017
To the Experienced Hospital Staff Member Who Couldn't Accept That I'm Rare
https://themighty.com/2016/06/when-experienced-doctors-dont-listen-to-patients/
Wednesday, November 16, 2016
To the Doctors Who Expect Us to 'Just Live With It'
https://themighty.com/2016/11/getting-treatment-from-doctors-for-gastroparesis/
Tuesday, November 01, 2016
Friday, July 08, 2016
5 Things I Miss From My Life Before Chronic Illness
http://themighty.com/2016/07/things-i-miss-from-life-before-i-got-sick/
Wednesday, June 01, 2016
My Body is a Cage cover by Peter Gabriel
Anyone with chronic illness, disabilities, and chronic pain, can definitely feel like this.
Monday, February 22, 2016
Virtual Photo Walks - Walk the Walk For Those That Can't
http://www.virtualphotowalks.org/
Virtual Photo Walks.org (VPW) was founded by John Butterill, it is a not for profit that harnesses the power of the internet and mobile communications to enable the disabled infirm and those isolated by illness the hospitalized – young and old – to visit distant places."
Thursday, August 27, 2015
Please Help Jamie with Medical Expenses.
Please Help Jamie with Medical Expenses:
Please visit this link for further information on how you can help:
https://fundrazr.com/campaigns/110Y27/ab/f47fya
Thank you.
#CongenitalRubellaSyndrome #AutonomicNeuropathy #CRS #ScarletFever #Gastroparesis #TrigeminalNeuralgia #AutonomicNervousSystem #Fibromyalgia #ChronicIllness #ChronicPain #Disability #Disabilities #Disabled #ChronicHealthConditions #Diabetes #Diabetic
Please visit this link for further information on how you can help:
https://fundrazr.com/campaigns/110Y27/ab/f47fya
Thank you.
#CongenitalRubellaSyndrome #AutonomicNeuropathy #CRS #ScarletFever #Gastroparesis #TrigeminalNeuralgia #AutonomicNervousSystem #Fibromyalgia #ChronicIllness #ChronicPain #Disability #Disabilities #Disabled #ChronicHealthConditions #Diabetes #Diabetic
Giving the disabled and homebound a chance to 'hike' a volcano via Virtual Photo Walks
Giving the disabled and homebound a chance to 'hike' a volcano
http://www.pbs.org/newshour/updates/giving-disabled-homebound-chance-hike-volcano/
Giving the disabled and homebound a chance to ‘hike’ a volcano via: www.virtualphotowalks.org
I am so glad to see the article by PBS NewsHour via: PBS on how Virtual Photo Walks has helped the disabled.
Looks like I may no longer be able to participate in Virtual Photo Walks, because CenturyLink DSL says that they can't fix my DSL problem.
My 3.0mbps CenturyLink DSL subscription should at least be giving me at least 1.50mbps, but I am getting less than 1.0mbps, sometimes even less than dial up speeds. So it isn't fast enough for a stable video connection. I have realized how reliant I am on a high speed internet connection for everything, especially since I am disabled. Those of us in the rural areas are really hard hit by either lack of availability of high speed internet service at all, or very poor service if they can get it.
If it can't be fixed, I just want to say that I have enjoyed my time as a participant, and as a helper. I loved seeing the places that I have never gotten to see in person, and probably
never will. I want to thank John Butterill for what he has done with Virtual Photo Walks.
Take care,
Jamie Todd
#VirtualPhotoWalks #VPW #CenturyLink #DSL #PBS #PBSNewsHour #Disabled #Disability #HomeBound #PhotoWalks #PBSNewsHour #PBS
Giving the disabled and homebound a chance to ‘hike’ a volcano http://disq.us/8of94x
http://www.pbs.org/newshour/updates/giving-disabled-homebound-chance-hike-volcano/
Giving the disabled and homebound a chance to ‘hike’ a volcano via: www.virtualphotowalks.org
I am so glad to see the article by PBS NewsHour via: PBS on how Virtual Photo Walks has helped the disabled.
Looks like I may no longer be able to participate in Virtual Photo Walks, because CenturyLink DSL says that they can't fix my DSL problem.
My 3.0mbps CenturyLink DSL subscription should at least be giving me at least 1.50mbps, but I am getting less than 1.0mbps, sometimes even less than dial up speeds. So it isn't fast enough for a stable video connection. I have realized how reliant I am on a high speed internet connection for everything, especially since I am disabled. Those of us in the rural areas are really hard hit by either lack of availability of high speed internet service at all, or very poor service if they can get it.
If it can't be fixed, I just want to say that I have enjoyed my time as a participant, and as a helper. I loved seeing the places that I have never gotten to see in person, and probably
never will. I want to thank John Butterill for what he has done with Virtual Photo Walks.
Take care,
Jamie Todd
#VirtualPhotoWalks #VPW #CenturyLink #DSL #PBS #PBSNewsHour #Disabled #Disability #HomeBound #PhotoWalks #PBSNewsHour #PBS
Giving the disabled and homebound a chance to ‘hike’ a volcano http://disq.us/8of94x
Chronic Illness is a Thief
Chronic Illness is a Thief
Chronic Illness is a Thief:
* It steals our bodies.
* It steals our energy.
* It steals our health.
* It steals our family.
*It steals our friends.
and...
* It Steals the person we used to be!
Friday, March 06, 2015
Open Letter To Those Without - Not Done Living - Ricky Buchanan
Not Done Living - Ricky Buchanan: Open Letter To Those Without:
An Open Letter to Those Living Without a Chronic Illness or Disability: http://notdoneliving.net/openletter/index.html and also: http://notdoneliving.net/openletter/options
An Open Letter to Those Living Without a Chronic Illness or Disability: http://notdoneliving.net/openletter/index.html and also: http://notdoneliving.net/openletter/options
Wednesday, April 18, 2012
Sunday, October 04, 2009
http://notdoneliving.net/openletter/id
An Open Letter To Those Without Invisible Disability Or Chronic Illness …
By Ricky Buchanan on May 10, 2009
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to understand me.
An Open Letter To Those Without Invisible Disability Or Chronic Illness …
By Ricky Buchanan on May 10, 2009
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to understand me.
Subscribe to:
Posts (Atom)