Living With It

I suppose it might be different for people diagnosed as children, who can hardly remember what life was like without diabetes.  But for me, diagnosed in my mid-30's, it still shocks me sometimes...

Sometimes lying in bed at night, I think maybe it's all a mistake -- maybe I could just stop taking all the meds and using all these devices, and my body would just go back to doing what it used to do.  Maybe it was just a blip, like a bad cold or rash that hung on so long you almost believed you'd have it forever.

Sometimes when I have a really bad day (like this Saturday), where my blood sugar plummets to 60 and later soars to just under 300, the frustration is hard to reign in.  I know it's the disease making me moody, but knowing that doesn't make it any easier.  I'm just so GD mad and sick of it all!

And here I am, one of the incredibly lucky ones: nearly two months ago I started on the new OmniPod tubeless insulin pump, generally considered the state-of-the-art insulin therapy at the moment.  And it is amazing.  From a design standpoint, this two-part system is in a league of its own. The little insulin pod that you attach to your body is controlled wirelessly from a compact unit that looks and feels similar to any consumer PDA, and uses simple English language for commands. 

I call the OmniPod my little miracle machine, since it's made life so much easier and more pleasant than when I was on shots.  Talk about frustration: the newspapers like to report that pumps replace (gasp!) "up to 4-5 injections a day."  Hell, with my crazy schedule and all the corrections, I was up to more like eight.  And trying to "fine-tune" my dosing was like playing pool with a blindfold on.

So I'm fortunate and deeply grateful to companies like Insulet...

But then it hits me: pending the miracle of a cure, this thing isn't going away.  And when I consider living the rest of my life with this XL half-kiwi lump on my abdomen, I don't feel so lucky. Every time that unit on my belly presses against something and it hurts, or I wear it on my arm and it catches on the door jam and nearly pulls off... Every time I look closely at my overloaded purse, containing at least 3 separate and distinct digital devices (don't get me started on packing for travel with diabetes!), I pray silently for further innovations and convergence.

The time has come for those of us living with these devices to stop quietly accepting what we're given, and rather make some noise about what we really want as these products evolve.   

Just some additional thoughts from one of 20m+ Americans living with it...

Comments

[Laura]

Know how ya feel Amy. I don't wear the pump but having to lug around all the extra diabetes "Paraphernalia", I can surely relate. When I buy a new purse I have to make sure it is big enough to accomodate my emergency can of sugary soda, my monitor and a little compartment for extra syringes. I have come accross some very pretty "GIANT" purses though!

[Scott]

I appreciate your perspective, but think of how annoying it is carrying all this crap around as guy with a "man bag" full of meters, test strips, glucose tabs, extra needles or infusion sets, etc., etc., etc.). At least you can throw it into a purse and not look like a stranger from a faraway place or God knows what else. I thank H&M for mass merchandising messenger bags, but can't help but feel like its a purse!

Regardless, I wrote my own letter to the Chairman & CEO of Eli Lilly on what his company needs to make our lives easier from a design standpoint. I would hope after the company's earnings plunged 39% during Q1 2007 and ironically, they've lost 39% market share in the insulin market (to 43% in 2006) during the past 6 years that they might just take my post seriously, but alas, that has not happened. But we should pursue nevertheless!

[Maureen]

Amy, my son was diagnosed just after his 7th birthday, and always says that he can't remember anything before he "got" diabetes. We go through everything you touched on in addition to growth spurts, puberty, sports, field trips, ignorant grownups, defiant school systems etc...Luckily, my son doesn't let it get in his way, he's a kid with diabetes, not a diabetic kid. Plays ice hockey(that's very tricky with a pump!) and three other sports. Our family has learned rocket science trying to keep up with all of the "stuff" necessary to care for a diabetic child. We work around it well, but why the hell should a kid have to deal with this at all? My answer was to become an advocate for them. I work with the JDRF and the ADA. Anyone can do this, just a matter of getting involved. No one will ever be able to say that I didn't try to do whatever I could.

[Erin]

Any interest in a pancreas (http://www.flickr.com/photos/kirinqueen/414694239/) to hold all those diabetes supplies and gadgets?

[Tom]

Wow, Amy. I was actually just thinking about this last night and was going to make a post about it today. I still am going to most likely, when I find some free time. I was diagnosed 3 months before my 18th birthday, so I can clearly remember what life was like without my pump and without all the counting and worrying.
We definitely need to start making some noise. We can't let this be a Diabetic Dictatorship, it needs to be a Diabetic Democracy.

This post really made me start thinking again. About the past, about the present, and definitely about the future of all of the diabetics out there.

Be on the lookout for a post later today.

[Jay N.]

I have days like this too. I'm 26 and developed Type 1 last May (coming up on my anniversary). Sometimes I get so mad about this disease...especially when it comes to dealing w/ my insurance company on supplies. For someone that had never spent a minute in the hospital, suddenly being thrown into a world of doctors, blood tests, pharmacies and EXPENSIVE supplies, it can be SOOOO frustrating. Just know that your not alone and that there are 20 million of us feeling the same way.

[Michael Park]

I wish it was socially acceptable for guys to carry purses.. I guess I have to move to Europe.... Anyway, I carry around my backpack constantly - whether I'm actually going to university or not.
Convenience is not just a benefit though - when I was young and impressionable I stopped carrying around my tester with me simply because friends made fun of me for always having a purse with me.
And yes, everyone has second guesses about being diabetic, they just show themselves differently at different stages. Be thankful that you're not in the young and stupid category where you might actually convince yourself for a day that you're not diabetic.
Sometimes that second guess inspires me that there will soon be a cure, or reminds me that making lifestyle changes can make management even less intrusive. Sometimes it makes us bitter.

[Chloe B.]

As a 30 year old, just diagnosed last month, I'm now on such a small dose of insulin now, It's very easy to think that it will go away. I'm constantly still thinking it has to be a big mistake, and wrestling with myself on whether to keep taking the small basal dose. If I stop taking that, will anything truly bad happen? I secretly believe my body will pick up where it left off, when it was considered normal, especially with my "Oh so close to normal" sugars I have now. Maybe I won't ever be hyperglycemic again. I think how do they really know it's not transient?!

[Lili]

Chloe, I can't speak for everyone, but I have LADA. Over the past year I've seen my insulin doses go up from 10 units a day to 30 units a day. That's how I know it's not transient.

[AmyT]

Ladies: I have LADA, too. Like Chloe, I needed only tiny doses for about the first 2 years. Up to small-ish doses now, but my BG certainly skyrockets if I don't get the dosing right. Definitely not transient...

[Emily]

I can definitely identify with all the posts. I was diagnosed at 19 and am 23 now. I've been on 40+ units a day since the very start. It is difficult to deal with having a pump attached at all times - even more so thinking about the future with it. My upcoming wedding, my first "real" job, pregnancy and children...it's overwhelming. I may be overly optimistic, but I feel like they'll definitely make this better in my lifetime. I don't know how I'd imagine life if I didn't think that way!

[Scott K. Johnson]

I often think about just how crude this awesome technology is.

I mean in order to check my blood sugar I have to stab my finger and bleed on something.

To deliver insulin I have to violate the skin and tissue that protects me in a rather violent manner.

To wear a CGMS I would have yet another "thing" sticking out of me.

Sure, it's all great, and keeps getting better. But you can't convince me that it's not crude and primitive.

[vicki]

It may be crude and primitive but it's a heckofa lot better than 50 years ago! Or even 20 years ago. And after 10 years of living with LADA, I want to let you all know, after a while taking care of your diabetes becomes second nature. And the rewards of taking care of it are NO AWFUL COMPLIATIONS. Which deefinitely makes it worthwhile.

[Sarah]

I have had Type 1 since since I was in diapers. Lucky since I don't know any different, unlucky because my fingers are sore, and I am running out of places to inject my insulin/put my pump sites due to scar tissue. I have had numerous seizures prior to the pump since I am so insulin sensitive. I have tried my best to manage, but I feel a good 40 years older than I am. I am tired and burnt out. Nobody thinks anything of me having Type 1 diabetes, since I look "normal".

Little do they know that I am sometimes scared I won't wake up in the morning, so I always make sure I look "nice". :)

I do agree that methods to treat this disease are lacking. With technology increasing in other areas contrasted with the T1 medical breakthroughs that never seem to make it to that "5 years time" mark, it can be downright depressing. I agree with you Amy, and all of us Type 1's understand.

But when I get down like this, I think of those with T1 who live in Africa, having to walk for hours to the nearest free clinic. to get enough NPH or R insulin to last them the week, probably knowing that they might die right then and there if the clinic has none.

I also get upset because I have always wanted to work overseas helping these same people, but my damn T1 and the risk is what holds me back!

Across the world, Type 1 diabetics needs a better solution. Insulin is not a cure, and insulin is not enough.

[lee]

I sometimes still genuinely bevlieve I will wake up one day and find out my diagnosis was all a mistake (diagnosed at 28 last year). Then sometimes my body reminds me that it definately was no mistake, and I am reminded of all the dangers involved with it. That is when I get angry that I now have to deal with it all, I mean, what did I do to deserve this?? But I guess I am luckier than some.

[Jim]

Hi Amy, I can relate to you. 99% of the time I do not even think about the things I have to do to stay healthy. I just do them, almost automatically. Yet from time to time it hits me. I will have to do this for the rest of my life. It is times like that, that I wish I was "normal" and could eat anything I wished and not have to worry about the consequences.

[Dave]

I was diagnosed with diabetes almost a year ago when I was having a pre-op blood test. Now I am on to my second endocrinologist who is awesome and is doing a great job with my treatment plan. For the most part I have excepted that I will have full type 1 diabetes at some point. Currently my body still produces some insulin so I have a bit of a cushion. Tomorrow I am meeting with a nurse to finish the final steps to start using my new Minimed 522. I am very excited to start using it. I am over giving myself 6 or 7 shots a day and I want to master it so that I can have an even better control over my BG. I am sure I will get annoyed at times but I know that it will be better than sticking myself with a needle every day-pricking my finger is bad enough!!!!

[Justin]

I actually don't mind the shots, it's the rigidity/schedules/etc. I could say that it's my personality, but in reality, I am pretty sure that I am in a prolonged period of denial. I would love to be on the pump, but can't seem to even keep records long enough to appease my endos. Did any other pumpers have to jump through all these hoops? If anyone could email me with their experiences, I would be thrilled. Thanx!

[birdie]

Oh Amy, I have felt this way many times before. A sense of what is close to shock, when I remember, yet again, that this is not a curable disease. That this is the way I must lead my life. I have to catch my breath at these moments, because I am actually momentarily breathless in the realization of that truth. Of course, we all go on, but it is amazing how, even after 20+ years, I can still be shocked by the fact that it is not going away anytime soon. Shocked and always a bit sad. And then the morning comes and there are dogs to be walked and beauty all around and I forget. Until the next time, which thankfully, is usually a bit farther away than the last time!

[pauline]

I am a type 2 diagnosed 16 yrs, and on my pump 5 years. Last week, i went to a "taking of your diabetes" or tcoyd program. Taking to a therpist , who wrote a book about diabetes burnout, I told him , i threw it out, BOY did his eyes bug out. It is scary and overwheleming to think long term care of this disease. I am so sick of being tangled in bed with it around my arms, legs chest and mouth,and yeah, it does hurt when it lands hard on your face. but a person has to take one day at a time or even take one step at a time with this disease.i get burned out and then next week, i feel privledged to have this wonderful tech. in my life. unfortunetly , thank you for being here. you all help me and hope each other.