My role is to give them an honest PWDs (person/people with diabetes) patient point of view about life with diabetes & pump therapy. I'll also be discussing what I want and require from my healthcare professionals, and I will use THIS LETTER as my guide. Maybe I'll even quote "Love Amongst The Islets of Langerhans," who knows?
But bottom line, it's not about me, it's about US - As in every single person (t1, t2,t3) who's life is affected by diabetes. What do you want to say to them?
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21 comments:
I would want them to know this:
Dear Medical People,
Please listen to me, instead of talking at me. We both have things we can learn from each other. You may have medical know-how, but I know my body and my diabetes better than anyone, because I live with it everyday.
Thanks,
Virtue.
Congrats Kelly - how exciting!
I would love the health care field to know, as a mom to a CWD:
1. G is still a child. Who happens to have diabetes. And as her mom, I have to weigh everything in her life against that. How I raise my child to enjoy her childhood, sometimes at the expense of the best A1C on the planet. She will have one childhood. I want them to know that and remember that when talking to me about her.
2. G needs support as a child with diabetes. She needs to connect with other kiddos who have it. When the health care professionals are on my side, they help that happen, they facilitate that. G's emotional health is as important to me as her physical health.
3. She has diabetes and she CAN HEAR YOU TALK ABOUT HER in front of her. If you have something to say about her care, her life and it's possible complications - that you think she should not hear, then ask her to step out of the room and say it to me. I am an adult. I will communicate what G needs to know to her when I feel she is ready. But please, for all that is holy, don't talk to her about long term complications like blindness, amputations, and heart attacks. She honestly, just wants to go to the sleepover on Friday night, as it should be. She knows, she knows, good care!!! We live it 24/7/365 and while I;m talking about 24/7....
4. While you all get to go home and be diabetes-free in your lives (most of you, except you T1s and you can all close your ears right now) we, as a family, live it 24/7/365. We don't get a break. So, you know what, don't come down hard on me and for the love of pete, cut me some slack every once in a while. I have not slept a full night's sleep in 18 months. Let's see you try it and see how you feel. And please, no more helpings of guilt, I've had enough, thank you very much.
5. In the end, it is G's diabetes. If she doesn't want the pump inserted into her tummy for now, please respect her and her wishes. She is the one who must wear it. She's a smart chick. She will eventually wear an insertion site there, but it might be a while. Have patience with her and respect her decisions when we give her decisions to make. Forcing her will do no one any good.
That's all I got for now. Good luck at your presentation. I hope some of our dr's and CDE's are there!
Dear Medical People,
I realize she's a little kid to you, but she's diabetic and she's your patient. Quit talking about her and start talking to her. She is the best person to describe how she feels. When we leave your office, I want her to feel good about herself. If she's going to be dealing with this for 90 years, you need to help us develop a positive attitude in her.
Thanks,
PWD's Mom
Congrats! SO exciting! You'll do us proud, darlin'.
Gosh, um?
Life is not just about Diabetes or a digit (A1c); there is much more to us. We are all individuals. We each process and deal with everything (medication, treatment, food, stress, exercise) differently. Please, don't read us like a book. Not one of us is the same. There is no set formula for managing Diabetes.
Listen and we will listen. Support and we will talk.
This our life; not some cold.
Have fun, K2!!
Kelly - OMG! I'm excited for you!!!!
To the medical people:
I'm very appreciative of the fact that you went into the medical field to learn about our disease. But, please keep in mind, that it is, quite frankly, our disease... every freakin' day. Please learn to understand that we are people, we make mistakes. We are not just lab A1c's and 2 weeks worth of bg's to look at. We are humans. We try to live lives just as close to normal as you do. Understand that things come up and make diabetes very hard to manage, and nothing in your text book will tell us how to "fix" it. Diabetes is a case-by-case, day-by-day, person-by-person disease, and we don't all fit the textbook scenarios you may have studied in med school. Treat us like people, like a friend. Try to understand where we are coming from, even though you may have no idea where that is. Help fight this battle with us, not against us. Learn from us just as we learn from you. Ok. That is all. :-)
Well, the first two comments said some awesome things! Things I would add:
--Please don't rush me. I have three months of stored up experiences I might want to ask questions about or get your feedback on in our hour together. I take off work and get blood work done in advance. My time is valuable too!
--Please remember I'm human. As such, I'm not perfect. But the fact that I'm going to appointments and trying are really the best I can do.
--Thank you for hiring good and helpful staff members. If I need to call your office and it's important to me and I like the people working there to understand a few things about diabetes.
--I like it best when I feel like we're a team.
Kelly,
I just read your letter and loved it!
As a mom of a diabetic I don't want the endo, nurse practitioner, or educator to talk to me in a condesending way when S's A1c has climbed a little. Being a Mom is a very difficult job and being the mom of a D is even harder. I like how you put in your leter that the docs need to understand the emotional side of this disease. If I could take D away from my daughter and give it to myself instead I would do it in a hearbeat, so I don't want a health care professional who doesn't have a child with D treating me as if I am not doing the best I can for her. To leave a Dr. visit feeling like the health care professional just negativley judged me as a mother is not a good way to feel. Especially when mine and my families life revolves around diabetes and quite frankly we hold ourselves together pretty well.
So I guess what I'm trying to say is that the health care professionals can be clinically perfect, but if they don't get the emotional side of this disease all their knowledge will be lost on me.
Congratulations and good luck!! Also, thanks for asking for the input. Yvette
WTG Kelly!
I totally respect medical people for all the difficult patients they have to suffer with who don't do what they're supposed to. But please understand that we are not them. PWDs are, 99% of the time, trying our darndest to make this work and have some kind of life around the seams. We are worried too and we don't need the scare tactics--we do it to ourselves better than you ever can. We are smart, tough, organized and committed, and we badly need your help to survive.
Also, please don't forget: diabetes is an incurable disease. So is lupus, MS and many cancers. Would you ever judge a lupus/MS/cancer patient the way you do a PWD?
Congrats, Kelly. I can't wait to hear about how it goes.
Can you please ask them to stop predicting when a cure will come particularly for those that are newly diagnosed?
Can you also tell them that a "good" A1C doesn't mean that the patient doesn't need their input and counsel.
Ask them to please not try to fill up an hour with nothingness for the sake of filling up an hour.
Could you ask them to please, please, please, give us a form in advance so we can fill out all the settings that they will never refer to again anyway beforehand so that the precious time we have with them can be spent on more productive things.
I wish the first thing out of the CDE/Doctor's mouths was: what do you need to accomplish at this visit? If we could get that setup at the beginning, the time would be exponentially more productive.
Thank you for asking Kelly.
Try to keep in mind. Don't confuse "I know what is statistically likely here" with "I know exactly what is going on in this particular situation." Try to remember that you're dealing with people, not closed system robots. Remember that patients may not have cultural or personal reasons for why they aren't doing well. Don't use negative or shaming language if you want someone to do something! People that feel bad about themselves aren't going to do better. Learn about therapy referrals.
This is so awesome! I'm sure you'll give them something to remember.
I do not have really any experience with D adults, but I have a CWD and they may take note of the order of that: Child first, With Diabetes second.
We're extremely fortunate to have a team for Jonathan and other kids in our area that believe that so deeply they would go to the ends of the earth for these kids to be kids. For medical practitioners that don't -> Get with the program. Treat them with the respect and courtesy that all people deserve and they themselves would want to be treated with. Put the disease and management in the proper context of the patient and what point in their life they are at.
Of course, management is a high priority, but we don't have to save their lives by forsaking their life.
a lot of people have said it before me but...
treat me as an individual, not a text book case. what works for your last patient probably won't work for me. please listen to me when i express my opinions and concerns - i've probably been type one longer than you've been a doctor and whilst my scientific terms are lacking, my experience is not.
I think I would like them to know that every number has a story. They can look at a spread sheet of numbers and blame it on basals or bolus ratios...but really...that 300 at breakfast was because his line broke on L's pump. And that 389 you see at 10am is because J forgot to bolus for breakfast. And those 60's you are seeing pop up are on days B has track. Every number is at the mercy of not only programmed settings...but emotion, sickness, activity and LIFE! So maybe they think a basal change is in order at a certain hour of the day...but if I don't think one is warrented, please listen to my gut feeling. Blood sugar numbers are more than just numbers...they are alive with stories and special circumstances.
Thanks for listening Kelly. :)
I have nothing to add except to say, You would be on my list to speak for me so I trust you will get all ninjabetic on them and maybe explain to them the healing power of Bacon.
Go get um! I AM SO PROUD OF YOU!!!
Oh how exciting, Kelly! You're going to do a GREAT job!
Everybody's made some great points, but I'll just add these two:
First, it's important for docs to understand that, especially in type 1, it's impossible to keep perfect control all the time. I had a doctor who used to look at my blood sugar records and underline all the highs and lows with a red marker, and then look up at me accusingly. (Maybe I was just imagining the accusing look, but that's how it felt.) But obviously there are going to be times our sugar spikes into the 200's or higher, and it has nothing to do with anything we've done or could've controlled, just our bodies acting screwy. D is just so much harder to control than any non-D can understand. So it's important for doctors to continually act as a support system, working with us rather than blaming us, and understanding we're doing the best we can.
Related to this, I think they also should understand that diabetes can be hard on a patient psychologically. Dealing with the stresses day after day just wears on us sometimes. I think it's important for doctors to feel their patients out, actually ask us how we're feeling and whether we're having problems coping, especially if the doctors notice an unexplained change in our A1C, or see we're testing less frequently...
Good luck, k2. Hope you'll write and tell us how it went!
That some of us diagnosed with T2 under 50 can AND do make necessary lifestyle changes to warrant safe A1C levels under 6.0%. :)
I would say please guide me but do not dictate to me. That is exactly what my endo does and it's why we get along so well. He let me know that he thought pumping would be the best thing for me, but he didn't force me. He let me come around to the idea in my own time. And I think that is exactly why pumping worked so well for me from the start. It wasn't forced on me - I asked for it when I was ready to give it a real shot.
Congrats! You'll do us proud.
I think everyone has come up with some great suggestions, and I'll just add this: If you get a sense that some of your patients can handle some science, throw everything you've got at 'em. You know a lot more than we do about how our bodies' systems work, but we make 99% of all the decisions. Help us understand as much as we can about what's going on with our juices.
Awesome Kelly!
Wow - so many great comments already. I don't have anything real specific to add, other than that I totally trust you to preach for us. :-)
Thanks Kelly for speaking for US, all of US. I am having a hard time coming up with anything else to say. Maybe because I feel so fortunate to have a wonderful Endo and Family Practitioner, whom BTW, actually TALK with EACH OTHER and WITH ME not AT me. They both take an interest in the D and what I am doing with it. Yes I get yelled at when I fall off the wagon but they both support me and help me get back up on that horse that just kicked me in the teeth. Maybe that is what I have to add. It's a team effort.
I would ask them to please educate us on what treatment options/diets/exercise regimes etc etc are possible (because there are LOTS) and help us come up with our own goals for our management based on OUR priorities, not the goals/priorities of a big monolithic organization that has never met us. Give us choices and make us feel like we're in control, because we're the people who have to actually DO everything and we're the ones who have to live with the results.
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