This is why I hate diabetes the most

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Permalink Reply by Monica on September 6, 2008 at 4:32pm

Thank you very much for the info on NLD. I have never heard of this condition before. I will definitely do my research & educate my friends & family with diabetes...

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Permalink Reply by MelissaBL on September 6, 2008 at 11:44pm

Karen, we each have our struggles and stories. Thank you for sharing yours so that we can help you carry the burden and for educating those of us unfamiliar with this condition.

You are one of the most delightful, insightful, and warmest members of our community. What would you tell me if I had posted this? You would say something to make me feel supported and you would probably make me laugh. But you would also tell me that this doesn't matter. That it doesn't have any effect on who I am. That it is one more way that diabetes tries to take away from what is truly important.

I'm a professional singer with transparently white legs and have a huge dark brown birthmark on one leg (larger than a credit card, raised a few milimeters above my skin (so that dermatologists actually call it a mole and it meets all four indicators of future melanoma risk but the removal process freaks me out, so I just watch it)). ANYWAY, I can remember twice in my career thinking I could perform on stage without all eyes going to the dark-spot-on-Jupiter that is my lower right shin. I couldn't. They did. They couldn't resist. I don't work in shorts, perform in short dresses, or even wear capris - but the pool is me-time. You should find the situations where you can feel free to be YOU with all your imperfections. I'm out there arguably too chunky for the bikini I'm in, with my pale skin, birthmark covered leg, and pump infusion set tubing going every whichaway, but I'm out there that day for me. I don't swim often, but just like before diving in, you've got to take a deep breath and plunge.

And sometimes, you've got to have a little fun. Once in the sixth grade, I convinced myself to wear shorts one day. Walking down the hallway, a girl seated on the floor pointed and said I had "something" all over my leg. I gave the friend I was walking with a knowing look and threw myself in the floor yelling "get it off me! get it off me!" Totally freaked her out. :) Tell people gawking at your splotches "I know, right? Last time I'll use a spray-on sunscreen!" or how about "Mesh pants were a bad idea!" or maybe "You'd think I'd stop planting poison ivy in my garden!"

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Permalink Reply by Sohair Abdel-Rahman on September 7, 2008 at 12:51am

Karen,
You are great in every way,so forget about this.I have a 13 y old patient with hypoparathyroidism,developed vitelligo all over her beautiful face,she dropped of school because of her peers comments. I persuaded her to go back and to tell the girls that is her fate and she has to accept it and move on.
You are blessed in every way Karen.Best wishes

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Permalink Reply by Doris Ann Dickerson on September 7, 2008 at 9:56am

Karen I'm so sorry that this has affected you. Me, myself and I haven't got thar problem but I've had diabetes for 45 years now and well you never know! I have never heard of NLD but thanks from all of us that didn't know about it! I guess I'll be talking to my Dr about it really soon! Good luck to you dear!!!!!!!!

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Permalink Reply by Doris Ann Dickerson on September 7, 2008 at 1:19pm

Uhm make that 35 years now I'm 45 years old! Sorry about that!

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Permalink Reply by Melody Chapin on September 7, 2008 at 11:46am

I had a friend who also suffered from NLD. I know this is going to sound like a lie, but...

I truthfully, truthfully do not think these pictures are that bad or horrible or ugly or frightening. If I saw someone on the beach who looked like this, I might think she had a funny sunburn or maybe scarring from a real burn, or, in some of these pictures, just a funny discoloration of skin. That said, I do understand your frustration and self-consciousness.

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Permalink Reply by Kevin on September 7, 2008 at 1:50pm

It's all part of this disease. I do not suffer from this condition but I can empathize with you. I would not think any more or less of you if I were to see it. I think you should enjoy your life and not worry about what others think. I don't think it takes away from being attractive in anothers eyes; it's just another human variation.

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Permalink Reply by Karen Doering on September 7, 2008 at 3:07pm

Thanks again to everyone for your kind and understanding comments.

I have enjoyed my life and have always done beach vacations and will continue to do so.

I just wonder how my life might have been or what I might have accomplished if it were not for diabetes and for some of the physical complications I have endured.

Sitting here with my second low from cutting the lawn and pulling weeds, ahhhh!!!

I know there are things far worse especially after viewing Stand up for Cancer Friday night, but just sharing my little tale.

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Permalink Reply by Michelle on September 10, 2008 at 2:09pm

Hi Karen! I have NLD also. I was diagnosed with diabetes when i was 9, then got NLD on my shin when I was 12 after scraping it on a swing set. It has grown and shrunken and lightened and darkened over the years. I also was given different treatments from doctors, and was offered the steroid injections, but I declined. They gave me steroid pills instead, which I don't think was a good idea to be giving to a preteen. Grrr!

One of my doctors along the way gave me Retin-A, the cream made for acne. It made it less red for a little while, but I stopped using it because it seemed to be thinning my already-thin skin, so I'm not sure if it ultimately would have made it go away. I had previously been given all kinds of different skin creams and the Retin-A gave the only noticeable change.

Thanks for posting! I hadn't thought about how much it sucks in a while, sometimes I forget about it until someone sees it and asks "Geez, what happened to your leg?!". Then I get to brag about how long the name of it is. Maybe the more we complain about it, a doc will stumble upon a treatment. It is as though the fatty layer of skin is missing, so it seems like it should be a simple fix.

By the way, my last name is Doering too! Small world.

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Permalink Reply by Karen Doering on September 10, 2008 at 6:56pm

Thanks for responding Michelle, I don't feel so alone about it, also don't feel so guilty for being a bit self conscious. I often beat myself up for letting peoples stares get to me.

No way is your last name Doering. :) Made me smile. :)

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Permalink Reply by Meghan on September 10, 2008 at 4:00pm

Hi Karen, I also have this on my legs. Not the prettiest thing, but it could be worse. Most people assume it's a burn. I actually kind of like when people ask me about it because I get to spit out this really long, scientific name. I've used some topical steroid creams on it, but it didn't help. The only time it really bothers me is when I walk into a chair or table, or my 3 year old kicks it accidentally. Then I'm in tears. The dermatologist diagnosed it for me about nine years ago, and explained it as a deterioration of collagen under the skin, and I actually find it amazing that my endocrinologists and other doctors have never seen it before, and some have never heard of it!

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Permalink Reply by Karen Doering on September 10, 2008 at 6:58pm

Thanks for sharing Meghan, isn't it amazing when some MD's are clueless. It also amazes me that there is not some sort of treatment. My sister says you had that checked out years ago, go back to the dermatologist I am sure there is something they can do for you now, well, sorry sister there is not. ;) I think even one dermatologist was not familiar with it, when I sought treatment. :(

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