Invisible Illness Week
Sep. 15th, 2009 08:53 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
fangirl_says1. The illness I live with is:
Dilated Cardiomyopathy, pacemaker/defibrillator
2. I was diagnosed with it in the year:
2008
3. But I had symptoms since:
2007
4. The biggest adjustment I've had to make is:
Dealing with being tired constantly and having little endurance. That I might have to have a heart transplant one day. The knowledge that my life will probably be shortened.
5. Most people assume:
I don't know this for sure, but I imagine that people assume that the fact that I am overweight (I've gained 45 lbs. since my diagnosis) is the cause of my heart problem, not a result of it. That I must have given myself heart disease because I eat a lot of greasy fast food (I don't), or that I probably smoke/d (never). There is a lady at my work who thinks I'm not supposed to lift anything even slightly heavy, even though I've told her that's not the case.
6. The hardest part about mornings is:
Finding the will to get up. I don't ever feel fully rested.
7. My favorite medical TV show is:
I watch "House" from time to time, but mainly just to keep Ron and Hannah company when they watch it.
8. A gadget I couldn't live without is:
My pacemaker/defibrillator. It keeps my heart's rhythm steady. If it gets too wonky, it'll shock me (the pamphlet the hospital sent home with me calls this "delivering therapy", which has to be one of the better euphamisms I've heard.) And the Internet, which keeps me entertained when I'm too tired to do anything else.
9. The hardest part about nights is:
Waking up feeling like I can't breathe.
10. Each day I take [?] pills & vitamins.
I take 11 different meds every day.
11. Regarding alternative treatments, I:
Haven't checked them out. I know that there are some dietary supplements that are supposed to "support heart health," but I don't think they would do much for me.
12. If I had to choose between an invisible illness and a visible one, I would choose:
Most of the time, I don't think it matters. But I admit that it's embarrassing when I get breathless and sweaty walking a short distance, and because I'm paranoid I often think people see me, see that I appear to be a healthy middle-aged woman, and think I'm just fat and lazy, that I should lay off the doughnuts and the Double Whoppers and get off the couch once in awhile.
13. Regarding working and career:
My job is not very physical, so I should be able to keep doing it. My cardiologist always asks me if I'm still working, and is pleasantly surprised when I say yes. So far, my workplace and my boss have been wonderful and flexible regarding doctor appointments and the few times I've had to leave work because I was too tired. I'm blessed with very good insurance (though if I do need a heart transplant, I'll still have to pay $30,000 out of pocket.)
14. People would be surprised to know:
That there are days that I feel pretty good. That I do continue to eat healthy foods and walk every day I'm up to it. That I can feel when my heart gets off-rhythm (doesn't hurt, but it's disconcerting as hell.) That if my defibrillator does fire, I'm not allowed to drive for six months after that. That I can't talk/listen to a cell or cordless phone on my left side. That I carry a card for my device at all times, as I can't go through metal detectors anymore.
15. The hardest thing to accept about my new reality is:
Probable early death.
16. Something I never thought I could do with my illness was:
Nothing yet; it's still mostly about what I can't do.
17. The commercials about my illness
There aren't any.
18. Something I really miss doing since I was diagnosed:
Cons.
19. It was really hard to give up:
Alcohol. I used to have maybe three drinks in a year, but now that I can't have any, I miss it.
20. A new hobby I've taken up since my diagnosis is:
Well, I played Sims 2 a lot more for awhile; does that count?
21. If I could have one day of feeling normal again, I would:
Dance. Run. Skip. Climb. Stay up past 10 p.m.
22. My illness has taught me:
Erm...nothing, yet? Maybe I just haven't been dealing with it long enough.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
Most people don't know what it is. Or they think it's something that will get better.
24. But I love it when people:
Keep me company when I don't have the energy to do anything.
25. My favorite motto, scripture, quote that gets me through tough times is:
Life: nobody gets out of it alive.
26. When someone is diagnosed I like to tell them:
I've never encountered anyone else who has dilated cardiomyopathy, online or in real life.
27. Something that has surprised me about living with an illness is:
Just the tiredness.
28. The nicest thing someone did for me when I wasn't feeling well was:
Ron got me an Ipod when I was in the hospital so I could watch episodes of Supernatural.
29. I'm involved with Invisible Illness Week because:
Because I have an invisible illness, I suppose.
30. The fact that you read this list makes me feel:
A little embarrassed. I've debated not posting it because I'm worried I'll seem all Poor Pitiful Me or that I'm attention-whoring.
I'm not sure why it seems difficult now that I've written it all out.
Dilated Cardiomyopathy, pacemaker/defibrillator
2. I was diagnosed with it in the year:
2008
3. But I had symptoms since:
2007
4. The biggest adjustment I've had to make is:
Dealing with being tired constantly and having little endurance. That I might have to have a heart transplant one day. The knowledge that my life will probably be shortened.
5. Most people assume:
I don't know this for sure, but I imagine that people assume that the fact that I am overweight (I've gained 45 lbs. since my diagnosis) is the cause of my heart problem, not a result of it. That I must have given myself heart disease because I eat a lot of greasy fast food (I don't), or that I probably smoke/d (never). There is a lady at my work who thinks I'm not supposed to lift anything even slightly heavy, even though I've told her that's not the case.
6. The hardest part about mornings is:
Finding the will to get up. I don't ever feel fully rested.
7. My favorite medical TV show is:
I watch "House" from time to time, but mainly just to keep Ron and Hannah company when they watch it.
8. A gadget I couldn't live without is:
My pacemaker/defibrillator. It keeps my heart's rhythm steady. If it gets too wonky, it'll shock me (the pamphlet the hospital sent home with me calls this "delivering therapy", which has to be one of the better euphamisms I've heard.) And the Internet, which keeps me entertained when I'm too tired to do anything else.
9. The hardest part about nights is:
Waking up feeling like I can't breathe.
10. Each day I take [?] pills & vitamins.
I take 11 different meds every day.
11. Regarding alternative treatments, I:
Haven't checked them out. I know that there are some dietary supplements that are supposed to "support heart health," but I don't think they would do much for me.
12. If I had to choose between an invisible illness and a visible one, I would choose:
Most of the time, I don't think it matters. But I admit that it's embarrassing when I get breathless and sweaty walking a short distance, and because I'm paranoid I often think people see me, see that I appear to be a healthy middle-aged woman, and think I'm just fat and lazy, that I should lay off the doughnuts and the Double Whoppers and get off the couch once in awhile.
13. Regarding working and career:
My job is not very physical, so I should be able to keep doing it. My cardiologist always asks me if I'm still working, and is pleasantly surprised when I say yes. So far, my workplace and my boss have been wonderful and flexible regarding doctor appointments and the few times I've had to leave work because I was too tired. I'm blessed with very good insurance (though if I do need a heart transplant, I'll still have to pay $30,000 out of pocket.)
14. People would be surprised to know:
That there are days that I feel pretty good. That I do continue to eat healthy foods and walk every day I'm up to it. That I can feel when my heart gets off-rhythm (doesn't hurt, but it's disconcerting as hell.) That if my defibrillator does fire, I'm not allowed to drive for six months after that. That I can't talk/listen to a cell or cordless phone on my left side. That I carry a card for my device at all times, as I can't go through metal detectors anymore.
15. The hardest thing to accept about my new reality is:
Probable early death.
16. Something I never thought I could do with my illness was:
Nothing yet; it's still mostly about what I can't do.
17. The commercials about my illness
There aren't any.
18. Something I really miss doing since I was diagnosed:
Cons.
19. It was really hard to give up:
Alcohol. I used to have maybe three drinks in a year, but now that I can't have any, I miss it.
20. A new hobby I've taken up since my diagnosis is:
Well, I played Sims 2 a lot more for awhile; does that count?
21. If I could have one day of feeling normal again, I would:
Dance. Run. Skip. Climb. Stay up past 10 p.m.
22. My illness has taught me:
Erm...nothing, yet? Maybe I just haven't been dealing with it long enough.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
Most people don't know what it is. Or they think it's something that will get better.
24. But I love it when people:
Keep me company when I don't have the energy to do anything.
25. My favorite motto, scripture, quote that gets me through tough times is:
Life: nobody gets out of it alive.
26. When someone is diagnosed I like to tell them:
I've never encountered anyone else who has dilated cardiomyopathy, online or in real life.
27. Something that has surprised me about living with an illness is:
Just the tiredness.
28. The nicest thing someone did for me when I wasn't feeling well was:
Ron got me an Ipod when I was in the hospital so I could watch episodes of Supernatural.
29. I'm involved with Invisible Illness Week because:
Because I have an invisible illness, I suppose.
30. The fact that you read this list makes me feel:
A little embarrassed. I've debated not posting it because I'm worried I'll seem all Poor Pitiful Me or that I'm attention-whoring.
I'm not sure why it seems difficult now that I've written it all out.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2009-09-16 01:11 am (UTC)So while I don't know what you go through, know that your courage to face this, try to take care of yourself, is inspirational to me. *hugs*
no subject
Date: 2009-09-16 01:21 am (UTC)I don't really know what to say beyond that, except that it sucks you have to go through all that, and I admire your strength in dealing with it every day.
I'm not sure if you know this or not, but you're pretty damn fabulous. ^___~ <333
no subject
Date: 2009-09-16 01:36 am (UTC)no subject
Date: 2009-09-16 01:37 am (UTC)no subject
Date: 2009-09-16 02:20 am (UTC)no subject
Date: 2009-09-16 03:00 am (UTC)no subject
Date: 2009-09-16 03:02 am (UTC)no subject
Date: 2009-09-16 04:51 am (UTC)no subject
Date: 2009-09-16 05:08 am (UTC)Now I need to think about this Invisible Illness memme.
no subject
Date: 2009-09-16 05:42 am (UTC)no subject
Date: 2009-09-16 06:47 pm (UTC)no subject
Date: 2009-09-16 07:56 pm (UTC)(Your answer to no. 25 reminded me of "I plan to live for ever, or die trying.")
You're an inspiration to me.
no subject
Date: 2009-09-16 08:02 pm (UTC)xxx
no subject
Date: 2009-09-16 08:03 pm (UTC)no subject
Date: 2009-09-16 09:54 pm (UTC)