1. Diabetes sucks
. Any attempt to say otherwise is futile.
2. We need to build a strong trusting relationship with our care providers. It helps to make sure thing don't start slipping.
As of today - 13 years into the D, I have no trust in doctors. NONE.
3. Don't waste our time. I stop bringing my pump in when I went in - because it took the nurse 45 minutes to figure out the how to get the info off the device.
4. Kids are actually pretty good with the crappy illness. It's teenagers that tend to fuck up their sugar and rebel. And, it's young adults that tend to have a lot of issues and depression with this. Realizing that your life is not like anybody ells, the jobs lost or just the job efficiency, the girl/boy friends that we don't have or loose and - the money spent on diabetic supplies and time wasted on stuff like 45 minutes in clinic because is trying to figure out the pump for the god knows how many times.
At a some point in life we just want to not have diabetes. For some of us it literally means that we tend to act like we don't have it. We can do just what we need to stay just alive, we test our sugar very little - miss most of our short-term shots, and miss replacing a pump cartridges as immediately as we should....
Want to help? Great. Figure out how to help us TAKE A BREAK. Realize that this is not the time for an AIC of 6 or even 7, but help us avoid the next dka, or and A1C of 12. The all or nothing attitude - that diabetes does require tiers us out. So from 8 test we go down to.... 1. You can offer to check at least 3-4. Or instead of avoiding some foods - deciding when to eat them and how much. There are ways. Realize that just telling us to be good all diabetics and do the work - is not going to work.
5. For most of us - food is an issue. Even with out dealing with a diagnosed of an eating disorder. Of course - the famous diabulimia is always there - but must of don't do it for very long if at all.
Be real. We tend to be very smart. Leave an opening for us. But ask. And I mean really ask. Because we find it hard to ask for help. But if we get offered - and some point we will break down.
6. If you are into research. Please. Make sure that you patients know this. I hate getting looked over with all my problems - just to figure out if I fit another research.
7. Cut the bullshit. Be honest. You're life work might be the treatment of diabetes. But for us - our more then full time job IS diabetes. Rather we wanted to or not. It's more then our job's life. It is our life.
8. Don't attack us. Even if we are absolutely acting like a total idiot. Like I said - we spend a lot of time with this D. More then you do. If you attack us - we just won't come back. We don't like to to be yelled at (or at least most of us). That kind of defeats the propose on yelling at us to get a grip. Right?
9. More then we need ANOTHER nutritionist we need some physiologist advice and care. In 13 years - I wad NEVER offered by any diabetic care giver some physiological care. And havening some kind of eating disorder - before I was diagnosis with D kinda of makes my wonder what shit my doctors were on - and did it damage their logic.
10. I know. Diabetes tends to be a pretty straight forward illness. Take "20 units of insulin for this amount of carb/sugar" and call me in the morning. And yet - we know that in Medicine there's still more we don't know then do know. And people like me drive doctors nuts. I can be perfectly fine and wake in the morning with 600, dry as bone and ketones for years. For no reason (that we can find).
Don't preach. I understand that your immediate thought is that WE MUST HAVE DONE SOMETHING. But the truth is - most of us really take pleasure in reaching little goals of the day like: don't hypo, don't go over 200, don't eat more then 150 grams of carb toady.... Stuff like that. Fighting a defiant diabetes that does not play by the rules - is hard and very very frustrating. We don't need to be told stuff like "you don't care about yourself" or "you don't take care of yourself". Believe me. It only leads to one thing. NOT COMING back to the doctor until it's the er doc we need. (and just think - if it's the er doc that tells you this after we coming just to make sure we didn't slip into the beginning of a dka....)
some of just don't fit the mold. Deal with it. Don't yell at us.
2. We need to build a strong trusting relationship with our care providers. It helps to make sure thing don't start slipping.
As of today - 13 years into the D, I have no trust in doctors. NONE.
3. Don't waste our time. I stop bringing my pump in when I went in - because it took the nurse 45 minutes to figure out the how to get the info off the device.
4. Kids are actually pretty good with the crappy illness. It's teenagers that tend to fuck up their sugar and rebel. And, it's young adults that tend to have a lot of issues and depression with this. Realizing that your life is not like anybody ells, the jobs lost or just the job efficiency, the girl/boy friends that we don't have or loose and - the money spent on diabetic supplies and time wasted on stuff like 45 minutes in clinic because is trying to figure out the pump for the god knows how many times.
At a some point in life we just want to not have diabetes. For some of us it literally means that we tend to act like we don't have it. We can do just what we need to stay just alive, we test our sugar very little - miss most of our short-term shots, and miss replacing a pump cartridges as immediately as we should....
Want to help? Great. Figure out how to help us TAKE A BREAK. Realize that this is not the time for an AIC of 6 or even 7, but help us avoid the next dka, or and A1C of 12. The all or nothing attitude - that diabetes does require tiers us out. So from 8 test we go down to.... 1. You can offer to check at least 3-4. Or instead of avoiding some foods - deciding when to eat them and how much. There are ways. Realize that just telling us to be good all diabetics and do the work - is not going to work.
5. For most of us - food is an issue. Even with out dealing with a diagnosed of an eating disorder. Of course - the famous diabulimia is always there - but must of don't do it for very long if at all.
Be real. We tend to be very smart. Leave an opening for us. But ask. And I mean really ask. Because we find it hard to ask for help. But if we get offered - and some point we will break down.
6. If you are into research. Please. Make sure that you patients know this. I hate getting looked over with all my problems - just to figure out if I fit another research.
7. Cut the bullshit. Be honest. You're life work might be the treatment of diabetes. But for us - our more then full time job IS diabetes. Rather we wanted to or not. It's more then our job's life. It is our life.
8. Don't attack us. Even if we are absolutely acting like a total idiot. Like I said - we spend a lot of time with this D. More then you do. If you attack us - we just won't come back. We don't like to to be yelled at (or at least most of us). That kind of defeats the propose on yelling at us to get a grip. Right?
9. More then we need ANOTHER nutritionist we need some physiologist advice and care. In 13 years - I wad NEVER offered by any diabetic care giver some physiological care. And havening some kind of eating disorder - before I was diagnosis with D kinda of makes my wonder what shit my doctors were on - and did it damage their logic.
10. I know. Diabetes tends to be a pretty straight forward illness. Take "20 units of insulin for this amount of carb/sugar" and call me in the morning. And yet - we know that in Medicine there's still more we don't know then do know. And people like me drive doctors nuts. I can be perfectly fine and wake in the morning with 600, dry as bone and ketones for years. For no reason (that we can find).
Don't preach. I understand that your immediate thought is that WE MUST HAVE DONE SOMETHING. But the truth is - most of us really take pleasure in reaching little goals of the day like: don't hypo, don't go over 200, don't eat more then 150 grams of carb toady.... Stuff like that. Fighting a defiant diabetes that does not play by the rules - is hard and very very frustrating. We don't need to be told stuff like "you don't care about yourself" or "you don't take care of yourself". Believe me. It only leads to one thing. NOT COMING back to the doctor until it's the er doc we need. (and just think - if it's the er doc that tells you this after we coming just to make sure we didn't slip into the beginning of a dka....)
some of just don't fit the mold. Deal with it. Don't yell at us.
אין תגובות:
הוסף רשומת תגובה