T1DM Pump Excitement is All Wrong

Click over to my blog for the full text and other posts like the “fun” I had with my insulin pump infusion site last night. I’m posting the full text of this blog here because I think it’s site specific enough that its worth a full post.

I know why type 1 diabetics get excited to get a pump. I was very excited to finally get off of multiple daily injection therapy (MDI). I just feel that we need to feel this excitement is sad. I can think of very few other diseases where a primary life saving treatment device is treated with such fever. Cardiac patients don’t rejoice about a pacemaker, cancer patients don’t jump for joy about a 5-FU pump, ect. Maybe because those have become so standard that noone really cares, or maybe because it’s something about being on deaths door that makes it seem less interesting. Insulin pump therapy is standard of care by the ADA as it has shown to be a more effective tool for management compared to MDI. So why should T1’s be excited to receive something that we should expect to get? Maybe it’s the culture of T1 where there are so few things to look forward to (no remission, no cure, no better treatments than insulin) that we just accept this as one of the great things about the disease and convince ourselves that it’s a major step forward. I don’t know… On thing is for certain though every type 1 diabetic should have the opportunity to receive insulin pump therapy regardless of ability to pay. Money should never be an object when it comes to the management of chronic illness.

SuFu, PhD

Totally agree. Pump and CGM tech is my way of feeling some excitement despite this relentless, never-ending disease. Since I don’t have pump, I can imagine the grass is greener on that side.

I think the difference is that diabetes, unlike the other diseases you cite, require much more individual effort and ongoing commitment to monitor levels, self-dose, and self-medicate. I don’t mean to trivialize cancer or cardiac patients, but much of their disease maintenance is handled by a doctor who prescribes specific dosages of meds along with a list of “do’s” and “do not’s”. The long term prognosis may be better for diabetics than for patience of others, but the ongoing maintenance is much greater. A pump makes our lives easier to manage and a little less burdensome.

This is a very good observation, though.

Let me explain about the two occasions upon which I have been/still get excited about my pump. First, it’s not easy to get one. I’m LADA and had a terrible time controlling my BG’s. My endo really, really wanted me to get a MiniMed, but my C-Peptide took a long time to drop low enough to qualify. I kept taking tests, and when I finally got a low enough C-Peptide, got all the paper work done AGAIN, got the pump, got the training, and then finally saw my blood sugars stabilize–THEN I got excited. Really excited! Stayed that way for a few years and then my sites began to disappear. No point in going into all that, the result is that with so few good sites left, I can only wear my pump for special occasions. So secondly, I get excited to have it on again with practically guaranteed good results. For Fathers Day I get to wear my pump! I agree with you that it should never have been so difficult to get the pump in the first place and the pump itself and all the supplies should not cost so much. But anyway.

Anyway, have a good Fathers Day, SuFu and Everyone.

Scott. I completely agree. I talk about that more in a related post. However if you think of CLL with Imatinib therapy, ER/PR positive breast cancer with hormonal therapy only or HER2+ breast cancer with Trastuzumab, renal cell cancer with high-dose IL-2, and many others there are many patients out 10-20+ years on chronic therapy. so anymore the idea that diabetes is the only disease where chronic therapy prolongs survival is horribly outdated.

Trudy - The whole point about the post was that we shouldn’t have to be excited. It should be something that we expect to receive because it is a “better” way to manage the disease.

SuFu, I know. I get it. Still, wearing it now and again for holidays would remain exciting, even if my pump had been just handed to me in the beginning. The point I didn’t manage to make is that I sure do appreciate wearing the thing now, making holidays that much more exciting and special.

I was very slow to the pump game. When I finally made the decision, I did it without trepidation. And I was SO excited when my pod came. Yes, it has changed my management for the better. But I remember so strongly the feeling that it dawned on me that I wouldn’t be giving an injection every time I ate or before I went to bed. I about cried when I realized I could now imagine a day without a syringe. Pump therapy should be made readily available, I totally agree with that. I also think that CGM technology should be used as soon as possible. Now I eagerly await the improvements in the technology to get that jolt of excitement again. :slight_smile:

SF Pete, okay I’ve been forewarned to expect tears on the day when I no longer have to face 8 syringes. LOL!

I get excited about the idea of qualifying for a pump because I use the pens. I inject more than a half dozen times a day. Contrary to common belief, injections aren’t painless, and they leave bruises- sometimes really horrible ones. I get tenderness all over my grid. Some days injecting is extremely painful because my skin has become so raw and sensitive over the years- always healing from one injection or another. My fingertips are all poked, purple and blue, peeling and occasionally bleed all by themselves. And for some reason, I fall within a special age category that can’t qualify for a pump through BC Medical. I would have to pay for one out of pocket with no coverage- that’s $8000 just for the pump, and $25 every three days for the needles. I get excited about not always struggling with my diabetes, poking myself with hundreds of holes, hoping but never knowing where my BG will be. I revel in the increased ease, awareness and control I would have with a pump. I agree with your assessment of things, but when you make $8.50 an hour, and you have no extended medical coverage, and your diabetes care costs you more than half of your monthly income, which is only $1200, how are you supposed to control anything else in your life? Pay your bills? Afford food? Transport? I struggled with being able to pay for what I needed for years, and often times when I was unemployed. I lived on food bank donations, social assistance (which was only about 40% of that minimum wage income) and outright charity for a long time. Most people were pitiless, ignorant and insensitive. After running completely out of meds, even the hospital refused to allow me access to insulin, telling me “this is not a soup kitchen” and I could come back “in a coma.”

I agree with you, but I also think insulin-dependent Type 2’s should be able to get pumps as well. I’m not talking about the ones who take one shot of basal a night, but the ones who are on a full MDI regimen, and are dealing with a lot of ups and downs as well. The ones who are conscientious enough to take corrections when they need them, and who test regularly. This shouldn’t be a simple-minded Type issue.

I hear you SuFu.

As a T2 on MDI (five to six injections per day) with a pretty bad adhesive allergy, I have mixed feelings about the pump. I would LOVE to be able to better-manage my disease (e.g. set different levels of basal throughout the day or tweak back the basal for exercise, etc.)

However, I also have a lot of trepidation about investing huge amounts of time and energy into fighting my insurance company to get something that causes a miserable, itchy rash right off the bat. How will I know how I react without trying it?

I wish the pump was as “normalized” and easy to try as it should be – no more of a big deal than trying on different running shoes before making a decision to switch models or brands.

It drives me batty that so many doctors and insurance companies don’t “get” that pump therapy should be one of our freely chosen options. Can you imagine T0’s being told that they can only buy the brand of shoes that their doctor tells them they can have, or only use the kind of toilet paper that their insurance will cover? There’d be rioting in the streets.

Whose life is it, anyway? I’m the one managing to live with this buzzard of a disease and paying many thousands of dollars in insurance premiums. These are my eyes, my feet, my kidneys. It’s my skin that’s getting punctured over and over and over, day after day.

Give me options – let me try them all and make my own informed decisions about how best to manage my disease.

I completely agree with all of you. My grandmother-in-law is an IDDM-T2 and while I don’t think a pump would be appropriate for her I think it should be an option for everyone who requires intensive insulin management of their diabetes.

The costs for management are unreal and its really sad that people have to choose between giving themselves the appropriate medical care or eating/paying bills. I really hate it.

I was on 10-12 shots per day because of my eating habits with workouts and such. The day I went on the pump and didn’t have to give myself a shot I didn’t even feel diabetic anymore. My control isn’t much better (it’s pretty darn good as is) but it allows me to just feel more “normal” and not have to remind myself of my disease with every meal.

SuFu, that’s exactly the same reason I wanted to go on the pump. At first, my doc demurred, saying it was more trouble than it was worth (but turns out he knew exactly nothing about pumps), and then a friend got a new one and gave me his old one, and I put myself on the pump. When I showed it to the doc as a fait accompli, he agreed to get me a new one.

I’m REALLY irregular in my schedule (call it entirely un-self-disciplined), and yet do want to keep good control. So I was taking around 10 shots a day, too, and it gets to be a drag. Given that Novolog and Lantus are a lot better than the old NPH and R routine, the pump is still far superior for allowing me the lifestyle I want to live. Not everyone wants a pump, but those that want and could benefit from one should have it.

Now here’s hoping that Squirt and Batman escape the demon! :slight_smile: