here's a little something i wrote up for my friends to read to help avoid those wacky awkward moments around my weird health situations. since you probably don't actually know me if you are reading this the background is
that i have type 1 diabetes, gastroparesis [stomach paralysis] and multiple sclerosis.
also actually glaucoma, sjorgren's syndrome, psoriatic arthritis and ideopathic thrombocytopoenia purpura but those don't really relate to this post.i am always glad to answer well meant questions from interested people. i've heard some interesting comments from uninformed people who want to know more and don't know where to start so i won't ridicule you even if the question makes me wonder where you heard THAT from. as long as you mean well. trolls can bite me.
if you can read this, you are a wonderful person that i am glad to know.
if you want to know how to avoid more of those awkward conversations around my health, here's a little guide to help us communicate better.
1. yes, i CAN eat/drink that. i've been to the doctor, the nutritionist, eaten radioactive food and experimented on myself ruthlessly. if i can't eat it, i'm not going to even try. do NOT take food away from me. i will smack your hand. i probably already took the insulin for it and not having the food now is going to make me ill.
2. yes, i HAVE to do that NOW. diabetes doesn't wait.
3. insulin counteracts sugar. if i have too much insulin i need more sugar. if i have too much sugar i need more insulin. think of it like a set of scales - balance is best.
4. i'm an adult who is well educated on my various conditions. i have a team of doctors, read lots of books on it and i live with my chronic illnesses day and in day out. i'm glad that you care about me but unless you happen to be a neurologist, endocrinologist or gastroenterologist, or live with one of these conditions yourself, then no, you don't actually have the right to make suggestions.
5. i love it when you ask questions. even better if they are well meant questions and you are prepared to listen to the answer. because you know me, i WILL go into detail. gory gory details. mind numbing details. yeah, so ask if you want but be prepared for the consequences.
6. i do not want to hear the horror story of the person you know who died a painful death from one of the conditions i also happen to have. i am sorry for your loss. but giving me nightmares doesn't help me feel better.
7. the beepy thing? it's attached. the other beepy thing? it's also attached. no i can't leave them at home.
8. it beeps when it's important, so no, i can't turn the beeps off. if i miss the beeps i could die.
9. if i look at you funny and cover my mouth and try to get past you, don't stop me to ask if i'm ok. clearly i'm not but explaining it to you is just going to end with one of us covered in vomit and it's probably going to be you.
10. it's nice of you to ask if i need help getting up off the floor when my legs give out. i appreciate the concern. but since i won't be getting up until i can FEEL my legs again, asking once is enough. if you try to pull me up when i say 'no, thanks' i WILL pull you down on the floor with me because, frankly, i'm a bitch like that.
11. no, you can't touch my pump or my glucose meter. the glucose meter costs as much as my first car and the pump costs as much as my annual mortgage payment.
12. if i need to be somewhere and my sugar is not safe for me to drive, please trust me when i say i didn't do it to spite you. if i could make my blood glucose be perfect all the time, don't you think i would? it feels bad to have high or low blood glucose. really bad. also, it's illegal for me to drive like that and i'm not going to risk a car accident or losing my driver's license over a social obligation.
13. there is no cure YET. i promise you i will know about one before you do. i read the medical journals on it. vitamins, herbs, special teas from mexico, bee stings, eating right and sleeping upside down like a bat with white noise while eating jalapenos is not going to 'fix' me. yes vitamin D helps me feel better and i do like tea but there is NO CURE. insulin is not a cure either, it's just a really good treatment.
14. no, i will not go into the bathroom to take a shot, test my glucose, insert a new infusion set or place a CGMS sensor. bathrooms are full of bacteria and i am basically creating an open wound in my body when i do one of these things. pretty much anywhere else is better. i will try to do it where you don't have to see it but if you stare you are going to see it.
15. if you made it this far you are truly awesome and i thank you very much.