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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Wednesday, May 02, 2007

Diabetes Made Visible Dammit

Warning - graphic and gross pictures ahead. Turn back now if you are bothered by blood.

I changed my infusion set tonight. It had been three and a half days, a little less than another day of insulin in the cartridge, and just time to do it.

My old site was on my lower back, an inch or two left of my spine, and inch or so above my belt line. Basically as far back as I could reach. I put my new site in a similar location, but on the right side this time. All was good.

After inserting the new site, there are still things left to do. I have a routine that goes almost automatically. Part of that routine is after removing the old infusion site, I like to wipe the area with the alcohol swab that I used to clean and prepare the new site. It's just something I've always done.

So in the middle of my routine I am filling my tubing and I grab my used alcohol swab and wipe the old site. Once, twice, three then four times. I'm done wiping and go to set the swab down. And it's soaked with blood. A damn gusher.

My gushers rarely spray or squirt blood, rather it just, well, gushes! Huge, steady, thick streams of blood. And they take forever to stop bleeding.

For those unaccustomed to the term, a gusher happens sometimes when you remove your infusion set. You might nick a capillary or something (insert proper medical terminology here...), and it bleeds like crazy for a little bit.
Nothing to worry about, but it can be messy. And hope the cops don't come in the middle of one, or someone in the house is likely to get locked up. Blood frickin' everywhere.

There had been a delay between my pulling my old set out and wiping with the swab. Nothing huge, but easily 10 or 15 seconds. Do you have any idea how much blood can ooze out in 10 or 15 seconds?

Now I'm still filling the tubing on my pump - and trying to scramble to find a tissue, or napkin, or something that I can put back there. This something has two purposes - to soak up whatever blood is already there, and to absorb the blood that continues to gush out. So I've got insulin dripping steadily out of my unattached tubing, and blood gushing steadily out of my back somewhere.

I find a napkin, stick it on my back, then tell my pump to stop filling the tubing (after confirming that there was indeed insulin dripping from the exposed end (safety first people - pumping air will do you no good...)). The napkin stuck on my back by itself, held on by the blood (just like toilet paper and shaving nicks...).

I sat and applied pressure to my "wound" (?) for a bit, then took off the napkin. I found a clean spot on the napkin and wiped again to check for any fresh blood, and confirmed I was through it. Messy tragedy dealt with.

As I surveyed the carnage, bloody napkin and alcohol swab laying there with the rest of my normal site change trash, I thought "why is this Ok?".

Why is it Ok for any of us to have to deal with this?

All of this technology, science, money - why are we forced to use these primitive tools to deal with this shit? It is settled for. People are Ok with having to stick something under our skin to deliver insulin, and we settle for it. This is not how the non-diabetic person works!!

Don't get me wrong - without the tools and advancements we have, our job would be much, much more difficult. I am thankful for what we have. But I am pissed that we are Ok with it. And I am pissed that the basic treatment for us (insulin) has not changed. Insulin is not a cure.

These pictures are gross and bloody. But if this is what I deal with sometimes, than you will see them too. I'm not going to censor the images because this is diabetes made visible. It's the real deal folks. It should not just be Ok to have to deal with stupid shit like this.



In the end - it's really not a big deal.

My very wise wife said "well it's no use in getting mad about it!", and she is right (as usual).

But I was not really mad at this specific gusher, but rather all that it symbolized for me at the time. The very primitive treatment that we deal with, and accept, and adapt our lives to.

Diabetes made visible dammit. Put it out there so people can see what it is about on a daily basis. It is not Ok. It should not be settled for.

17 Comments:

Blogger travis said...

I'm (maybe/hopefully) getting a pump soon. Looking at those pics, though.. I supposed I could wait a little longer!
Luckily for me, since i'm fairly new at this, the pump - while not a cure - will at least be a welcomed glorification of insulin. We'll see how long the thrill will last.

10:32 PM  
Blogger Heidi said...

Well, Scott, this is just one of many examples that diabetes is not always as invisible as we would like/people tend to think. While several non-diabetics are likely to fret even about the tiny droplets of blood we need to test, I think most us diabetics – at least those of us who have been in this game for years – have gotten use to an occasional “blood bath” for one reason or another :-)

I too, have had a couple of those gushers lately. One was actually when inserting a new site. When I removed the needle and it was all bloody, I figured that I might as well remove the site immediately, and sure enough the catheter was already filled with blood :-( Very annoying, those gushers, especially when you are not prepared for them (have tissues at hand).

Anyway, as the usual humoristic fellow Dane would likely say to me if I complained about this: "Just appreciate that you have 5 litres of blood - there is plenty to "waste" on all the tests and injection-/infusion site accidents" ;-)

1:46 AM  
Blogger Scott said...

Although I only pumped for 3 years, I was lucky enough to have experienced a gusher only once during that time. It was a big nuisance, as blood just would not stop bleeding! I've had similar experiences with injections, naturally, which leave a beautiful black and blue mark -- just wonderful. I definitely would not hesitate about adding the photos to Diabetes Made Visible; we don't want to whitewash what its really like to live with this all the time, do we?!

6:02 AM  
Blogger Vivian said...

We have not had a gusher yet, but thank you for helping me be more prepared if we do. See if there were not posts like this and Daniel had one of these events, I might(ok I definitely would) freak out.
There is a lot that we should not settle for. They think we are sheep and we need to prove them wrong.
Hey, can you imagine if they did the crime scene blood searches in a PWD's house? You are right, someone would be going to jail. lol
Maybe we should all borrow Gina's black light. hahaha

7:30 AM  
Blogger Julia said...

O's never had a gusher from her pump sites but she's had finger gushers. She thinks they're funny, but then, she's twelve.

Thanks for posting this. I think diabetes is a very silent disease and people like you are really good at making noise and getting it out there, helping people realize that it's not just a couple of shots and no sugar.

9:16 AM  
Blogger Drea said...

you will be finding trails of blood for days! I had a little laugh at your expense when I read, what a shock to see that much blood!

Diabetes made visible...yesterday for the first time ever, I had an infusion site visible to the public eye. I did not mean to, but I tried my FIRST arm site (yippie!) and my gym shirt sleeve was shorter then I thought!! Yes I had a few people ask what it was....while I was running...

9:33 AM  
Blogger Kevin said...

You're right: It is NOT ok.

I have a habit now of always grabbing a handful of toilet paper and only removing my old site in the bathroom and in my underwear because of a few nasty gushers I've encountered.

Quite disturbing to bleed this much FROM YOUR STOMACH.

10:15 AM  
Blogger Stacey said...

Hey Scott,
I've been reading your blog for a while and I've gotta ask...
where did your get your logbook from?
Is it a program that you bought or something that you designed on your computer?

2:10 PM  
Blogger Scott K. Johnson said...

Stacy - thanks for stopping by. That logbook was created by Kevin, right above you! It's awesome. Send him an e-mail and I'm sure he'd be happy to share it with you.

And thanks to the rest of you all for the great comments!!

3:38 PM  
Blogger Kendra said...

Scott, you're right. I think a lot of the time we listen to the good angel on our shoulder and focus on being grateful for what we do have - for our LIVES - that we forget to let the world at large know once in awhile that this disease is, no ifs ands or butts, horrible. Pumps are great but pumps are also finicky and a huge pain in the ass. Shots are fine but they are also a huge pain in the ass. Insulin is great but insulin is also a huge pain in the ass. It is NOT a cure, and your post is a great example of the infuriating, humiliating, mystifying, and often gross bullshit we all deal with day in and day out, with no let up. Yeah, diabetes is manageable, but that doesn't mean I have to settle or be happy with the status quo.

6:48 AM  
Blogger Bernard said...

Scott

I don't know which I hate more, the gusher itself or the terrible 'bruise' that I get afterwards that reminds me about it long after it's gone.

Thanks for the pictures. It's good to show what we all have to go through.

10:24 PM  
Anonymous Anonymous said...

I have been type 1 for 40 years and pumping for 4. I have had a few gushers and I do get all pissy about it as well, like what else,ahhhh!!!!!!!!!, but....I would have a gusher a week if pumping would eliminate lows at all times, ESPECIALLY WHEN EXERCISING OR ACTUALLY ANY MOVEMENT!!!

Karen

3:29 PM  
Blogger Johnboy said...

Scott, sorry about the gusher, and thanks for the advance warning on the blood.

Question for you. Just how the heck do you put i site in the middle of your back, dude? My arm hurts and I start sweating just thinking about it!

4:14 AM  
Anonymous Tom said...

I HATE gushers. I had one the first day I had my pump and nearly died cause it scared me so much! I thought about going back onto injections, but then learned that ish happens, and moved on. I hate that we've all simply accepted it too, but it's the best we've got right now I guess. :-\

1:07 PM  
Anonymous Scott M said...

I think that's great. Let it be seen. That's the truth behind the curtain sometimes. I applaud your photos!

11:50 PM  
Blogger manny hernandez said...

Scott:
I can totally relate. I have had this same experience before (though at home) and felt very much the same way. Seeing an infusion site bleed can be quite something.

Anyway, thanks for sharing your experience and keep it up, man!

For what it's worth, I would also like to invite you (and your readers too) to join www.tudiabetes.com, a Social Network for Diabetics that I recently set up, where you can share your experiences in multiple media (blogs, forums, videos, photos).

5:05 AM  
Blogger Horsman said...

Man I just had a gusher right now, and it was big. I ruined $400 worth of clothing too.

This was my first, so a google found me this. Glad to see its pretty common.

Darn.

5:03 PM  

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