T1D is the worst illness you can get

Hello –

I have had T1D since 1993 and, like most of you here am very, very sick of it. I am sick of poking my fingers before every meal. I am also sick of my insulin not working fast enough to keep up with my food intake, which makes my BGs go HIGH!

What is most frustrating is that Medtronic MiniMed has released the implantable pump in the CE (Europe), but they won’t release it to FDA in the US where we could really use it as well.

The implantable pump works; I knew one of the Trial patients on the implantable pump and he said it was amazing! Your insulin works instantly because it releases insulin into the peritoneum (abdominal cavity).

I believe that Medtronic won’t release it in the U.S. because they are waiting for a continuous glucose monitor that will work with it, so that they would be the first to have a true ‘closed loop system’ aka artifical pancreas.

I also don’t believe that not enough is being done for those living with T1D! Our glucometer technology has not changed much in 20 years of having T1D. As well, the best insulin pump system, the OmniPod, is not advancing fast enough to keep up with the CGM technology. In fact, their PDM has not changed any way in 10 years.

So, we have all of this partially helpful technology. I love my OmniPod and I think it is the best because there is no tubing and I can forget that I have diabetes until my next bolus or blood sugar check.

Yeah, I am so sick of this illness. I also have HIV, Parkinson’s, and the T1D is the worst of them all!

~Antonio

I’m sorry to hear about how many different conditions you have to deal with daily. I can’t even imagine. I’ve been T1 for about 4 1/2 years now and struggle tremendously. Juggling that plus life is very overwhelming sometimes. So hat is off to you.

I’m new to this whole type one website thing but it really is nice to be able to hop on here and actually be able to relate to somebody. This illness has completely stressed me out and it’s just so relentless. To see somebody who still feels the same way after 22 years kind of scares me but shows how much people don’t understand. Oftentimes I feel like maybe I’m over exaggerating or just being weak. It just breaks me down from time to time. But it makes me feel a little better to hear people relate and remind myself that it is normal to feel this way sometimes.

On the other hand, when I read about people that have been living with it for 20+ years it rebuild encouragement. My only friend with Type 1 diabetes just passed 2 weeks ago. At the age of 28. This has consumed my thoughts over the past couple weeks. I’m waking up every night over and over and over. Terrified of this “dead-in-bed” shit. I haven’t FEARED my diabetes for about 3 years now. But without that fear I have underestimated the severity of my condition. 5 icu visits in the past 3 years w/dka. Maybe I needed this fear back in me :confused:

Anyways, just venting. Sorry lol. Point was, it builds my hope back up to see you guys who have been managing it for so long. Happy about it or not, you are blessed to be alive talking about it. So thank you for sharing.

hi @AntonioDee, hey I just wanted to say that I have seen a lot of changes since 1977, but no real game changers. most of the changes are incremental. I used to be more angry about it, but for right now I have settled on a decision that anything that makes the control of this disease a little less hard is okay.

I once was mad that I didn’t have shoes, until I met a man that didn’t have feet.

the deal for me is, no matter how hard it is right now, it can, for-sure, get a whole lot worse.

it takes a lot of courage to take care of this, because it’s painful and the only reward for doing a good job is you get to feel normal for a little while. I hope you are getting the support you need and if it means anything, I sometimes feel better helping others and getting outside my own head.

good luck!

hello @Gj562,

i pretty much say the same thing every time, t1 doesn’t ever get easier. after a while, t1 gets to be more routine. everything in life is like that, pretty much from what I have seen. I just turned 50 (fiddy! can’t *^%&%$ imagine…) last week and I have witnessed younger and healthier people pass away before me.

I am not saying “dead in bed” can’t happen - but it tends to be rare. living in fear means you are already suffering from it. arm yourself with good information. enlist the help of others and build a good team, show up for the work everyday and the rest is up to chance or providence, at your preference. I am glad you found the web site and hope you hang around.

Joe

Hi Antonio
Your opinions here are sound, and valid. I must add though, my wife’s pancreatic cancer is far worse than Type 1. Chemo, whipple surgery, radiation, loss of appetite, and yes, the looming probability of death, are far worse in my humble opinion that the Type 1 I have lived, and grown older with since 1966. I strive each day, to some how, find serenity. It can be difficult, and at times, seems almost impossible. But accepting the things in life, as they are can help relieve the bull of pricking fingers, low blood sugars, vision reduction, potential kidney issues and so much more. Pumps and CGM’s will improve. And I will surely be ready when a cure arrives.