STRATEGIC BLUEPRINT FOR ENBREL HAS IRREVERSIBLE JOINT DAMAGE THAT CANNOT BE UNDONE AT ITS CORE.
INSIGHT
Living with RA/PsA means that too often we put on a front and power through our day just to participate in life. We take it one day at a time, and focus on getting by and treating the pain, stiffness and fatigue because that’s what’s interfering with how we experience life right now. We do fear becoming incapacitated, handicapped and dependent on others for basic needs - that’s terrifying. But relative to maintaining the semblance of a good day today, it becomes a worry for the future. So we live in the now, just getting by.
CORE
What you’re afraid could happen, is happening now. RA/PsA can lead to irreversible joint damage that cannot …show more content…
Why can’t I do this anymore. The pain I can handle, it’s how I feel emotionally and mentally that’s really hard – RA, NYC
I feel depressed so much of the time – RA, Chi
I keep thinking why me? It’s not fair – RA, Dallas
Patients create what was described as ‘the two me’s” – the me they feel and the me they show the world. RA creates the perfect storm for a cover-up: it ravages at the point when there is so much going on their lives, the disease hurts inside but can’t be seen on the outside and facing the reality that there is no cure and it will only get worse is horrifying. And so it’s easy to disregard, ignore and not honor what’s they are feeling.
If I am feeling like this at 34, what will I be at 50 or 60. I can’t deal with that – RA, Dallas
I can tell from the minute I wake up what kind of day it’s going to be. But I have things I have to do and want to do and people who depend on me, so I suck it up – RA, NYC
I’m definitely in denial. I don’t want to think about what’s going on. It’s depressing how much has changed – RA, NYC
I know what’s going on, but I’m not really honest with myself. I have pain in my knee but haven’t even told my doctor about it. I just carry on. Maybe it’s the aging process? – RA, …show more content…
– RA, Dallas
Typing, writing paper work
My productivity goes down. Just typing hurts me – PsA, NYC
Even holding a pen is painful. I write like an old person – RA, Dallas
Cleaning
Vacuuming and cleaning up – PsA, Chi
Even doing laundry can be a challenge – RA, Chi
Playing with kids
Playing Barbies – I should be able to do that – RA, NYC
It is hard to get down on the ground and play with my grandkids – PsA, Chi
Figuring out triggers for the pain (weather, food, activities)
I try to figure out what makes it act up but it can be hard to tell the pattern – RA, NYC
It’s better in the summer. The winter is harder – PsA, Dallas
What will fail next? What will get disfigured?
What isn’t going to work next – which knee or finger – RA, Chi
What will my hand look like – RA, Dallas
Body part replacement
I worry about having to get a knee replacement – RA, Chi
Thinking about a replacement having to happen again – RA, NYC
Fear being handicapped; loss of mobility
I worry that there will be a time when I can’t do anything for myself – RA, NYC
What about washing my hair, using the bathroom – PsA,
INSIGHT
Living with RA/PsA means that too often we put on a front and power through our day just to participate in life. We take it one day at a time, and focus on getting by and treating the pain, stiffness and fatigue because that’s what’s interfering with how we experience life right now. We do fear becoming incapacitated, handicapped and dependent on others for basic needs - that’s terrifying. But relative to maintaining the semblance of a good day today, it becomes a worry for the future. So we live in the now, just getting by.
CORE
What you’re afraid could happen, is happening now. RA/PsA can lead to irreversible joint damage that cannot …show more content…
Why can’t I do this anymore. The pain I can handle, it’s how I feel emotionally and mentally that’s really hard – RA, NYC
I feel depressed so much of the time – RA, Chi
I keep thinking why me? It’s not fair – RA, Dallas
Patients create what was described as ‘the two me’s” – the me they feel and the me they show the world. RA creates the perfect storm for a cover-up: it ravages at the point when there is so much going on their lives, the disease hurts inside but can’t be seen on the outside and facing the reality that there is no cure and it will only get worse is horrifying. And so it’s easy to disregard, ignore and not honor what’s they are feeling.
If I am feeling like this at 34, what will I be at 50 or 60. I can’t deal with that – RA, Dallas
I can tell from the minute I wake up what kind of day it’s going to be. But I have things I have to do and want to do and people who depend on me, so I suck it up – RA, NYC
I’m definitely in denial. I don’t want to think about what’s going on. It’s depressing how much has changed – RA, NYC
I know what’s going on, but I’m not really honest with myself. I have pain in my knee but haven’t even told my doctor about it. I just carry on. Maybe it’s the aging process? – RA, …show more content…
– RA, Dallas
Typing, writing paper work
My productivity goes down. Just typing hurts me – PsA, NYC
Even holding a pen is painful. I write like an old person – RA, Dallas
Cleaning
Vacuuming and cleaning up – PsA, Chi
Even doing laundry can be a challenge – RA, Chi
Playing with kids
Playing Barbies – I should be able to do that – RA, NYC
It is hard to get down on the ground and play with my grandkids – PsA, Chi
Figuring out triggers for the pain (weather, food, activities)
I try to figure out what makes it act up but it can be hard to tell the pattern – RA, NYC
It’s better in the summer. The winter is harder – PsA, Dallas
What will fail next? What will get disfigured?
What isn’t going to work next – which knee or finger – RA, Chi
What will my hand look like – RA, Dallas
Body part replacement
I worry about having to get a knee replacement – RA, Chi
Thinking about a replacement having to happen again – RA, NYC
Fear being handicapped; loss of mobility
I worry that there will be a time when I can’t do anything for myself – RA, NYC
What about washing my hair, using the bathroom – PsA,