I'm writing this on behalf of my husband. He's not all that "social media savvy," so he's dictating and I'm typing. These are all his answers, given while playing Space Engineers. So without further ado...
1. The illness I live with is: Gitelman Syndrome. (It's a rare, genetic kidney disorder that prevents much of the body's reabsorption of minerals like potassium, magnesium, and salt, which can cause muscle spasms, cardiac arrest, and result in death if left untreated for too long. However, it also causes the body to hold onto too much calcium, causes the bones to be much harder than usual, and also causing stunted bone growth. Because of this stunted bone growth, muscles of Gitelman's patients often have a bulged "Popeye the Sailor Man" look to them.)
2. I was diagnosed with it in the year: 2011
3. But I've had symptoms since: Adolescence, early adulthood.
4. The biggest adjustment I’ve had to make is: Remembering to take the pills; it's never not on my mind.
5. Most people assume: It can be cured with a banana!
6. The hardest part about mornings are: Waking up with kidney pain and knowing I'll have to miss at least half a day of work.
7. My favorite medical TV show is: Hmm...Scrubs. Ooh! And Mystery Diagnosis. Except that's not on tv anymore cuz the tv people are DICKS.
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: Your MOM. I mean...I dunno. I guess when I work too hard and don't take the right amount of pills, I can get sick.
10. Each day I take a minimum of 12 pills.
11. Regarding alternative treatments I: Don't believe in that bullshit.
12. If I had to choose between an invisible illness or visible I would choose: That's a dumb question. I'd rather have NO illnesses.
13. Regarding working and career: It's hard to do my job with my disorder (commercial electrician), but I make it work.
14. People would be surprised to know: That this disorder is actually real. Seriously. I've had people act like they thought I was fakin'.
15. The hardest thing to accept about my new reality has been: How it affects my family, and knowing how sick I could get if I didn't take my medication.
16. Something I never thought I could do with my illness that I did was: I've never really felt like I couldn't do things. Just that I have to be careful when I do things. Oh! I can't break bones! I'm a superman!
17. The commercials about my illness: Commercials? My KIDNEY DOCTOR had never heard of my disease. There are no commercials.
18. Something I really miss doing since I was diagnosed is: Not having to stop every few hours to take those fucking pills.
19. It was really hard to have to give up: I have a doctor-ordered high-salt diet. I didn't have much to give up. And bonus! Salty snacks forever.
20. A new hobby I have taken up since my diagnosis is: Not really anything related to the diagnosis, but I like papercraft models.
21. If I could have one day of feeling normal again I would: I don't know. I'll get back to this. (wife's note: he didn't want to get back to this. Space Engineers is much more interesting than surveys about illness.)
22. My illness has taught me: Aw, whaaaat? I tried to make a rover, and now it's trying to drift off into space. What was the question? (It was "My illness has taught me...") It's made me more thankful for what I've got. It could always be worse.
23. Want to know a secret? One thing people say that gets under my skin is: "Eat a banana!" I mean, for real. A banana. All the doctors in the world can't cure it, but all I need is a banana. Hey, watch this. (Shows me something cool in his game.)
24. But I love it when people: Are interested in learning, and understanding without being condescending. And when they offer to help
25. My favorite motto, scripture, quote that gets me through tough times is: You can't live your life through quotes, man. (wife's note: ...says the man who has a Simpsons quote for EVERYTHING.)
26. When someone is diagnosed I’d like to tell them: Just take your damned pills. Learn to control your heart rate. Cut out the stress. You'll be fine.
27. Something that has surprised me about living with an illness is: It's odd how quickly it becomes "normal."
28. The nicest thing someone did for me when I wasn’t feeling well was: My wife always makes me feel loved when she takes care of me -- feeds me and helps me remember my pills and massages cramping muscles and such.
29. I’m involved with Invisible Illness Week because: My wife told me I had to (mischievous grin). Okay, okay! For real. Not many people are diagnosed with this disorder, and I want more people to be aware of it.
30. The fact that you read this list makes me feel: Good, because you're trying to learn.
2. I was diagnosed with it in the year: 2011
3. But I've had symptoms since: Adolescence, early adulthood.
4. The biggest adjustment I’ve had to make is: Remembering to take the pills; it's never not on my mind.
5. Most people assume: It can be cured with a banana!
6. The hardest part about mornings are: Waking up with kidney pain and knowing I'll have to miss at least half a day of work.
7. My favorite medical TV show is: Hmm...Scrubs. Ooh! And Mystery Diagnosis. Except that's not on tv anymore cuz the tv people are DICKS.
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: Your MOM. I mean...I dunno. I guess when I work too hard and don't take the right amount of pills, I can get sick.
10. Each day I take a minimum of 12 pills.
11. Regarding alternative treatments I: Don't believe in that bullshit.
12. If I had to choose between an invisible illness or visible I would choose: That's a dumb question. I'd rather have NO illnesses.
13. Regarding working and career: It's hard to do my job with my disorder (commercial electrician), but I make it work.
14. People would be surprised to know: That this disorder is actually real. Seriously. I've had people act like they thought I was fakin'.
15. The hardest thing to accept about my new reality has been: How it affects my family, and knowing how sick I could get if I didn't take my medication.
16. Something I never thought I could do with my illness that I did was: I've never really felt like I couldn't do things. Just that I have to be careful when I do things. Oh! I can't break bones! I'm a superman!
17. The commercials about my illness: Commercials? My KIDNEY DOCTOR had never heard of my disease. There are no commercials.
18. Something I really miss doing since I was diagnosed is: Not having to stop every few hours to take those fucking pills.
19. It was really hard to have to give up: I have a doctor-ordered high-salt diet. I didn't have much to give up. And bonus! Salty snacks forever.
20. A new hobby I have taken up since my diagnosis is: Not really anything related to the diagnosis, but I like papercraft models.
21. If I could have one day of feeling normal again I would: I don't know. I'll get back to this. (wife's note: he didn't want to get back to this. Space Engineers is much more interesting than surveys about illness.)
22. My illness has taught me: Aw, whaaaat? I tried to make a rover, and now it's trying to drift off into space. What was the question? (It was "My illness has taught me...") It's made me more thankful for what I've got. It could always be worse.
23. Want to know a secret? One thing people say that gets under my skin is: "Eat a banana!" I mean, for real. A banana. All the doctors in the world can't cure it, but all I need is a banana. Hey, watch this. (Shows me something cool in his game.)
24. But I love it when people: Are interested in learning, and understanding without being condescending. And when they offer to help
25. My favorite motto, scripture, quote that gets me through tough times is: You can't live your life through quotes, man. (wife's note: ...says the man who has a Simpsons quote for EVERYTHING.)
26. When someone is diagnosed I’d like to tell them: Just take your damned pills. Learn to control your heart rate. Cut out the stress. You'll be fine.
27. Something that has surprised me about living with an illness is: It's odd how quickly it becomes "normal."
28. The nicest thing someone did for me when I wasn’t feeling well was: My wife always makes me feel loved when she takes care of me -- feeds me and helps me remember my pills and massages cramping muscles and such.
29. I’m involved with Invisible Illness Week because: My wife told me I had to (mischievous grin). Okay, okay! For real. Not many people are diagnosed with this disorder, and I want more people to be aware of it.
30. The fact that you read this list makes me feel: Good, because you're trying to learn.