Her name was Donna, and she said that her son is on multiple daily injections rather than an insulin pump, because that is what works best for him, and doing something new would possibly compromise his quality of life. Good for you, Donna! You and your son are working with what's good for you, and I think that's the best way to do things.
She did say one thing, however, that I found a bit distressing. She said it is tough for them to admit within the DOC that they are on MDI, because they are "looked down on" and people treat them as though they "are not up to snuff".
I don't have any children of my own, but being a member of this online community since 2006, this is where I put my concerned-parent face on. My dear Diabetes Online Community, I am not speaking to any of you as individuals, because I don't know who the culprits are, but I swear we have been over this before. My friend Bennet Dunlap has a phrase for this: YDMV: Your Diabetes May Vary. Everyone is entitled to their own opinions, but if someone isn't looking for advice, if someone's treatment plan is working just fine for them, then leave them to it.
Straight up, no-bones-about-it, my insulin requirement is high. I am jealous when someone bemoans their huge 10 unit meal bolus. Part of the reason I chose the pump I'm using now (the Tandem t:slim) is because it will remind me to deliver the remainder of a bolus that is over the allowable maximum. I have had some clicking of tongues and shocked looks when I tell people my total daily dose, and I don't appreciate those any more than Donna appreciates judgement of her son's injections over pumping.
Look, DOC. I believe in kindness and understanding, and I like to believe in the best in people. I want to believe everyone is kind, flexible, and intelligent enough to know that what works for me may not even be remotely close to what works for you. Here's the thing--that is totally okay.
Remember, very few of us are medical professionals, and even so, most of our blogs are no substitute for medical advice you can get from your doctor, nurse, or diabetes educator.
So to Donna, you keep doing what you're doing. To everyone out there, keep doing what works for you. And to the naysayers out there, remember, we are not all the same. Be sensitive, especially if you're going around making assumptions. The DOC isn't all about sunshine and rainbows and unicorns, but we can all try our best to not make others feel so excluded that they don't want to speak their minds.
End concerned female senior member of the DOC rant.
I feel the same way since I went back to MDI. It's like why would I possibly do that when I have access to a pump? It shouldn't really matter but people are afraid to admit it does.
ReplyDeleteI am somehow seen as less of a good diabetic in the eyes of the DOC because I'm not tethered and therefore I must not be working hard enough to control my diabetes.
When really, that's not what it's about. Is it jealousy because I am making it work without my tethered pancreas? I don't know but just by going back on MDI, I have noticed a difference.
I don't care how people manage their diabetes, so long as they keep trying. One size (or one device) doesn't fit all and I wish the judgmental sentiments didn't surface. :(
ReplyDeleteFor the record, "judgey mcjudgersons" is the best blog post tag yet.
Between the golden rule, YDMV, and common decency, you'd think we would have to keep having these conversations. Ugh.
ReplyDeleteExcellent post.
I am last ninja on earth that would judge anybody's control. If it works for you then GO FOR IT! Great post as usual.
ReplyDeleteMy Endo is the worst about this, every quarterly visit he *tsk-tsks* and asks me about going back on a pump. Thats when I remind him that when I pumped I was going into DKA a lot. I would end up in the ER at least once a quarter. I pumped for nearly 2 years and went through so many insulin and rate changes that my Endo was the one to suggest I go back to MDI, [yes the same one]. We finally figured out that my body didn't like to absorb the insulin at the port sites after 1 day and it was way too expensive for me to be changing port sites every single day. With the CGM and MDI I am doing the best I can and I haven't seen the inside of an ER for D1 issues in over 4 years.
ReplyDeletePump occlusions every two days is unacceptable for me. I learned so much pumping and it now translates into great MDI control. No beefs at all about people who MDI, but if you really want to learn about your behavior, your basal rates and truer meal ratios, pumping is the best way.
ReplyDeleteTotally - YDMV. Whatever works best, and whatever works best for a particular time in your life! I'm a believer in using a pump and I love it, but I've started taking the yearly step of un-connecting for a bit - whether it's a week or even several months. Just to give myself that mental break from pumping, site searches, and so on. The best thing is to have options, and it's great that so many exist for whatever fits our worlds best. Echoing what you and others have already said.
ReplyDeleteThis is great. You have given me the inspiration to write something I've neded to post for a while. I'm glad I'm not the only one feeling judgement from the DOC, but I'm also saddened by that.
ReplyDeleteThank you.
I have recently been encountering a lot of raised eyebrows from doctors and nurses about my (apparently high) insulin requirements. I recently blogged about going on the pump and going from a 1:4 ratio to 1:20 at my doctor's behest to be conservative...no one should be shocked that I then had high blood sugar for days until we adjusted the ratios back down closer to my norm pre-pump. I don't know anyone else with T1D so I had no concept of what a "normal" or even "normal range" is for daily insulin intake. Thanks for sharing your story!
ReplyDeleteYDMV and as long as long as a person keeps trying and doing with their diabetes. I say go for it!!
ReplyDeleteDonna - You, your son & your family are part of our tribe - So keep on keeping on!
Xoxo
Well said. I've been on a pump since 2000, BUT my lowest A1C (5.8) was when I was on MDI (and people ALWAYS seem shocked when i tell them that). I couldn't agree more with the idea that one thing truly does not work for everyone in D-land. Again, well said Hannah
ReplyDeleteHow ridiculous!! I admit to becoming a bit perturbed when a T2 jumps in on a T1 topic & have to say, I do feel as if SOME (NOT ALL!) T2's just don't get it there their disease is much different than ours... however I'm working on that. But to down someone b/c of how they treat their disease just b/c it's different than how you treat yours? Absurd!! I too am on an insane amount of insulin via pump & am reluctant to share amounts sometimes, but hey, so is the life of a T1 for almost 40 yrs who is becoming insulin resistant, okay? Deal with it. ;) I pray that this D-Mom hangs in there & doesn't let a few ill-educate or ill-advised or just flat D-snobs get the best of her!! We all have to do what WE have to do to control OUR disease & live life the best we can. God bless & thanks for bringing this to the D-community's attention!!! <3
ReplyDeleteI'm a T2 who is on insulin. I cannot stand it when some T1 treat me as 'lesser than'. I'm on MDI because I have a lazy pancreas that doesn't secrete insulin on the regular and I have insulin resistance as well. My insurance will not cover a CGM or pump, (or supplies for a pump) because I'm T2 but I have to manage my diabetes as if it is T1.
DeleteYDMV includes T2'ers as well. I'm sorry that many T1'ers have to deal with the media/society ideation that diabetes is easily cured or handled, but please remember that it's not T2'ers collective fault either.
I don't think anybody is saying any group is at fault, T1, T2, LADA, MODY (is that still a thing), whomever. I think as community members, we all enjoy the freedom to express our opinions, and we need to respect those opinions even when we don't agree.
DeleteOf course, I've always been the "Let your freak flag fly!" sort of person, so I'm used to not being in the popular opinion. ;)
Go you for pointing this out and standing up for yourself! And to her for standing up for herself and her child. Everyone is different. Sometimes it takes a little nudge to remind us of that, but it's true.
ReplyDeletemy 10 year old was bullied by another T1D girl since my daughter was not on the pump. We need to make sure that we're not teaching our children that one was is superior either.
ReplyDeleteHannah-
ReplyDeleteThank you for writing this post. We have diabetes. We treat it differently. That is the beauty of the online community-we share diabetes. All judgements are suppose to be left at the door, right? People need to get with the program...YDMV!
Ugh!
ReplyDeleteI hate that! You like syringes? Use them. Prefer pens? Sounds good. Pump with tubing? Deal. Pump without tubing? Why not.
I don't get why we think we have any say in someone else's management. If they are happy with what they're doing, let them do it!
Chris (iam_spartacus) and I had a phrase we found ourselves repeating at MedX last week - "you do you". If we all just stuck to that.
Are you trying to say that we are not all the same? Ludicrous! We are all 33 year old men with 2 kids, type 1 diabetes, ADHD, and an uncontrollable addiction to anything that will make the CGM scream in agony. Aren't we?
ReplyDeleteWell said, Hannah. Thank you!
ReplyDeleteI'm one of the DOC who is on MDI (I'm a former pump user) so I think there's enough of us out there who can agree that for whatever reason (whether economic, preference or whatever) that know whatever method works is the appropriate one. However, over the years I've seen a sense of pump evangelism out there (that's not a compliment to those people). Thanks for letting Donna know she's doing right, and for the reminder to that we should not confuse enthusiasm for a treatment method with proselytizing that method on others!
ReplyDelete