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rm's LJ.
1. The illnesses I live with are:
a. Type 1 diabetes
b. PCOS
2. I was diagnosed with it in the year:
a. 1978 (I was 9 years old)
b. 1996
3. But I had symptoms since:
a. About six months before my diagnosis
b. not sure
4. The biggest adjustment I've had to make is:
a. When I was a child I had to learn how to administer shots to myself several times a day. I had to learn to test my urine, then blood when technology improved. I had to learn a lot about nutrition. 6 years ago I had to learn "carb counting" when I switched over to an insulin pump. I had to learn how to use the pump.
b. decisions about the use of hormones for "birth control" even when pregnancy is not a concern
5. Most people assume:
a. That I can "cure" my diabetes if I lose weight; that if I just watch what I eat I will never have high/low blood sugars; that I cannot eat certain things and that I am "cheating" when I do eat the things they think I should't be eating.
b. That I will want hormonal birth control anyway because of heterosexual assumption
6. The hardest part about mornings is:
I hate mornings for many reasons unrelated to my diabetes, and have since long before I was diagnosed. But I have a hard time getting up if my sugars rise during the night. I have a hard time getting up if I lost sleep during the night because of an unexpected low. I wake up in a confused panic if my blood sugars are very low when I wake up.
7. My favorite medical TV show is:
Grey's Anatomy. I have a crush on Sandra Oh and Dr. Cristina Yang is so much like Snape. Also, Callie Torres may be the only unconflicted bisexual on tv ever (at least for now). Seriously, have there been any others?
8. A gadget I couldn't live without is:
My insulin pump. Although iPeriod on my iPhone is turning out to be a useful tool.
9. The hardest part about nights is:
I always have to test my blood sugars before I go to bed. If my pump has a malfunction I may lose sleep dealing with it. I may lose a lot of sleep if my sugars drop or rise extremely during the night and I have to attend to this. Fluctuations in my hormones associated with my cycle can cause severe drops (estrogen affects sensitivity to insulin).
10. Each day I take [?] pills & vitamins.
I take enalapril as a preventive. My pump constantly administers insulin 24/7. I also take a vitamin and calcium.
11. Regarding alternative treatments, I:
Have no use for them. My body doesn't produce insulin. Nothing can change that.
12. If I had to choose between an invisible illness and a visible one, I would choose:
I don't really know if one is better than the other. And mine "becomes" visible when people realize the mysterious and subtle small lump under my dress or the funny machine that looks like a pager sticking out of my pocket with the odd tube they didn't notice before is actually delivering insulin to me.
13. Regarding working and career:
If I have a problem with my sugars or my pump, I must stop everything I'm doing to attend to it. Luckily, this has not caused a major issue for me so far. But it could prove inconvenient if it happens while I'm teaching, giving a presentation, or in the middle of a client having a vulnerable moment. I must always carry something with me in case my sugars drop, and so must always take into consideration access to food (e.g. if I have to go to a meeting somewhere and don't know the area or when I'll be back to home turf).
14. People would be surprised to know:
I never had a major depressive reaction to my diabetes diagnosis. But I did feel shame for a short while. Testing and dealing with the sugar fluctuations feels mostly routine now. However, if my sugars drop quickly it will sometimes make me cry for no reason and this can be exhausting. I can eat anything (or skip a meal) because my insulin pump allows me to adjust my insulin intake to accommodate for whatever I put in my mouth. I have a 'mental calculator' training wherein I must estimate the carbohydrate and fat content of everything I eat.
15. The hardest thing to accept about my new reality is:
A part of me looks forward to menopause just to relieve the blood sugar fluctuations caused by my cycle. The PCOS exacerbates this. I also have to remember to remove my pump when I go into the water. This reminder came up several times during my trip to Florida. Also, I live with the reminder that I am likely to get a host of secondary illnesses. In fact, I already had cataracts removed from both eyes and lens implants when I was 19. I guess that makes a third invisible illness, with my dry eyes and corneal erosions a fourth. Geez. Also, effort to lose weight through calorie counting goes out the window when my sugars drop. I am forced to "feed the insulin" with juice/soda/candy.
16. Something I never thought I could do with my illness was:
I used to think I could not be more athletic because of the risks of low blood sugars. Now I know I can, I just don't want to.
17. The commercials about my illness
Are annoying. Mostly ads for blood glucose monitors featuring newly diagnosed type 2s who whine about pricking their fingers or need a self-esteem boost to "take charge of their lives" and how monitor X will allow them to do that.
18. Something I really miss doing since I was diagnosed:
Not having to plan or manage the device attached to my body at all times that needs to be when I shower/swim/have sex. Eating without counting calories/carbs/fat.
19. It was really hard to give up:
A sense of being invincible (stolen fromrm but totally true for me too)
20. A new hobby I've taken up since my diagnosis is:
Can't really think of anything.
21. If I could have one day of feeling normal again, I would:
Relax
22. My illness has taught me:
A new way to be responsible for myself. To take ownership of my decisions (both good and bad). That life is short and actions and choices have meaning with consequences beyond the obvious. I've lost a friend and an acquaintance who both died before the age of 35 because they didn't manage their diabetes. I've seen clients wind up on dialysis before the age of 50 because they didn't manage their diabetes.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
That I have a "severe" case because I take insulin. That more insulin = bad control instead of just an adjustment of what my body requires. When I test my sugars and people want to know what the number is. Why? Stop being nosy! Stop being the blood sugar and food police. It's ok to ask if I'm ok and if I need something. But don't try to take over and tell me how to manage my disease.
24. But I love it when people:
Stop in their tracks to make sure I'm ok when it's clear my blood sugars are affecting me. Know me well enough to sense something is "off" and don't get annoyed if I suddenly seem extremely irritable or emotional or unusually hungry and cranky.
25. My favorite motto, scripture, quote that gets me through tough times is:
I don't really have one.
26. When someone is diagnosed I like to tell them:
You're life will never be the same again, but it's not over. You will find a way to turn this from a Major Event into just another aspect of your day. Also, I like to tell people I'm a cyborg because of my pump.
27. Something that has surprised me about living with an illness is:
It's another way to relate to people who also live with chronic illnesses.
28. The nicest thing someone did for me when I wasn't feeling well was:
I'm so very independent, it's hard to think of anything. I like it when the person I'm dating can tell something is off and attends to me by grabbing juice or whatever. But I hate it when people make a theatrical fuss about my lows/highs. I guess, now that I think about this some more, the nicest thing was save my life. My grandmother was the one who noticed I was ill and if she had not intervened I'd be dead instead of writing this entry.
29. I'm involved with Invisible Illness Week because:
It seemed like a good thing to do. I like raising awareness about what it's like to live with diabetes.
30. The fact that you read this list makes me feel:
A little weird, but also good. Amazed and flattered, because this meme is a bit tl;dr
rm's LJ.1. The illnesses I live with are:
a. Type 1 diabetes
b. PCOS
2. I was diagnosed with it in the year:
a. 1978 (I was 9 years old)
b. 1996
3. But I had symptoms since:
a. About six months before my diagnosis
b. not sure
4. The biggest adjustment I've had to make is:
a. When I was a child I had to learn how to administer shots to myself several times a day. I had to learn to test my urine, then blood when technology improved. I had to learn a lot about nutrition. 6 years ago I had to learn "carb counting" when I switched over to an insulin pump. I had to learn how to use the pump.
b. decisions about the use of hormones for "birth control" even when pregnancy is not a concern
5. Most people assume:
a. That I can "cure" my diabetes if I lose weight; that if I just watch what I eat I will never have high/low blood sugars; that I cannot eat certain things and that I am "cheating" when I do eat the things they think I should't be eating.
b. That I will want hormonal birth control anyway because of heterosexual assumption
6. The hardest part about mornings is:
I hate mornings for many reasons unrelated to my diabetes, and have since long before I was diagnosed. But I have a hard time getting up if my sugars rise during the night. I have a hard time getting up if I lost sleep during the night because of an unexpected low. I wake up in a confused panic if my blood sugars are very low when I wake up.
7. My favorite medical TV show is:
Grey's Anatomy. I have a crush on Sandra Oh and Dr. Cristina Yang is so much like Snape. Also, Callie Torres may be the only unconflicted bisexual on tv ever (at least for now). Seriously, have there been any others?
8. A gadget I couldn't live without is:
My insulin pump. Although iPeriod on my iPhone is turning out to be a useful tool.
9. The hardest part about nights is:
I always have to test my blood sugars before I go to bed. If my pump has a malfunction I may lose sleep dealing with it. I may lose a lot of sleep if my sugars drop or rise extremely during the night and I have to attend to this. Fluctuations in my hormones associated with my cycle can cause severe drops (estrogen affects sensitivity to insulin).
10. Each day I take [?] pills & vitamins.
I take enalapril as a preventive. My pump constantly administers insulin 24/7. I also take a vitamin and calcium.
11. Regarding alternative treatments, I:
Have no use for them. My body doesn't produce insulin. Nothing can change that.
12. If I had to choose between an invisible illness and a visible one, I would choose:
I don't really know if one is better than the other. And mine "becomes" visible when people realize the mysterious and subtle small lump under my dress or the funny machine that looks like a pager sticking out of my pocket with the odd tube they didn't notice before is actually delivering insulin to me.
13. Regarding working and career:
If I have a problem with my sugars or my pump, I must stop everything I'm doing to attend to it. Luckily, this has not caused a major issue for me so far. But it could prove inconvenient if it happens while I'm teaching, giving a presentation, or in the middle of a client having a vulnerable moment. I must always carry something with me in case my sugars drop, and so must always take into consideration access to food (e.g. if I have to go to a meeting somewhere and don't know the area or when I'll be back to home turf).
14. People would be surprised to know:
I never had a major depressive reaction to my diabetes diagnosis. But I did feel shame for a short while. Testing and dealing with the sugar fluctuations feels mostly routine now. However, if my sugars drop quickly it will sometimes make me cry for no reason and this can be exhausting. I can eat anything (or skip a meal) because my insulin pump allows me to adjust my insulin intake to accommodate for whatever I put in my mouth. I have a 'mental calculator' training wherein I must estimate the carbohydrate and fat content of everything I eat.
15. The hardest thing to accept about my new reality is:
A part of me looks forward to menopause just to relieve the blood sugar fluctuations caused by my cycle. The PCOS exacerbates this. I also have to remember to remove my pump when I go into the water. This reminder came up several times during my trip to Florida. Also, I live with the reminder that I am likely to get a host of secondary illnesses. In fact, I already had cataracts removed from both eyes and lens implants when I was 19. I guess that makes a third invisible illness, with my dry eyes and corneal erosions a fourth. Geez. Also, effort to lose weight through calorie counting goes out the window when my sugars drop. I am forced to "feed the insulin" with juice/soda/candy.
16. Something I never thought I could do with my illness was:
I used to think I could not be more athletic because of the risks of low blood sugars. Now I know I can, I just don't want to.
17. The commercials about my illness
Are annoying. Mostly ads for blood glucose monitors featuring newly diagnosed type 2s who whine about pricking their fingers or need a self-esteem boost to "take charge of their lives" and how monitor X will allow them to do that.
18. Something I really miss doing since I was diagnosed:
Not having to plan or manage the device attached to my body at all times that needs to be when I shower/swim/have sex. Eating without counting calories/carbs/fat.
19. It was really hard to give up:
A sense of being invincible (stolen from
rm but totally true for me too)20. A new hobby I've taken up since my diagnosis is:
Can't really think of anything.
21. If I could have one day of feeling normal again, I would:
Relax
22. My illness has taught me:
A new way to be responsible for myself. To take ownership of my decisions (both good and bad). That life is short and actions and choices have meaning with consequences beyond the obvious. I've lost a friend and an acquaintance who both died before the age of 35 because they didn't manage their diabetes. I've seen clients wind up on dialysis before the age of 50 because they didn't manage their diabetes.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
That I have a "severe" case because I take insulin. That more insulin = bad control instead of just an adjustment of what my body requires. When I test my sugars and people want to know what the number is. Why? Stop being nosy! Stop being the blood sugar and food police. It's ok to ask if I'm ok and if I need something. But don't try to take over and tell me how to manage my disease.
24. But I love it when people:
Stop in their tracks to make sure I'm ok when it's clear my blood sugars are affecting me. Know me well enough to sense something is "off" and don't get annoyed if I suddenly seem extremely irritable or emotional or unusually hungry and cranky.
25. My favorite motto, scripture, quote that gets me through tough times is:
I don't really have one.
26. When someone is diagnosed I like to tell them:
You're life will never be the same again, but it's not over. You will find a way to turn this from a Major Event into just another aspect of your day. Also, I like to tell people I'm a cyborg because of my pump.
27. Something that has surprised me about living with an illness is:
It's another way to relate to people who also live with chronic illnesses.
28. The nicest thing someone did for me when I wasn't feeling well was:
I'm so very independent, it's hard to think of anything. I like it when the person I'm dating can tell something is off and attends to me by grabbing juice or whatever. But I hate it when people make a theatrical fuss about my lows/highs. I guess, now that I think about this some more, the nicest thing was save my life. My grandmother was the one who noticed I was ill and if she had not intervened I'd be dead instead of writing this entry.
29. I'm involved with Invisible Illness Week because:
It seemed like a good thing to do. I like raising awareness about what it's like to live with diabetes.
30. The fact that you read this list makes me feel:
A little weird, but also good. Amazed and flattered, because this meme is a bit tl;dr
