Sunday, June 12, 2011

Necrobiosis Lipoidica Diabeticorum

I'm going about my day when I feel that telltale sting on my lower leg and I can't stop the string of cuss words that leave my mouth. It doesn't really hurt, but I know that in moments the pain will increase exponentially. I look down and see what amounts to little more than a scratch. I watch as a clear liquid begins to seep from the wound then count to ten as the pain begins to ramp up and I try to remember how to breathe.

My necrobiosis lipoidica diabeticorum lesions look like burns and ironically when they are injured they burn like they are literally on fire. A fire that will be repeated at random times during the next week or two that it takes for the injury to heal. The length of time depends on whether or not the living tissue beneath the lesion was injured too. The deeper the wound the longer the healing time. Also, the more frequent the shooting pains through the wound.

Although my loved ones and co-workers are used to seeing the lesions, when I've injured one, they can't help but ask if I'm okay. I can't say that I blame them. The wounds look nothing less than angry. Sometimes they will puff up or swell and often they will actually look like they are infected. Even though they aren't.

For years, I had kept my legs hidden at all costs even at home. No shorts or skirts. I wouldn't even leave my bedroom in my nightgown. I was just positive that everyone would stare at my legs. That this visual evidence of my diabetes made me even more of a freak. Not all of that was vanity or fear. I'm quite pale and can sunburn in a matter of minutes. The lesions can get burned in about half that time.

Some of it is vanity though. These hideously ugly lesions have turned my once porcelain skin to an orange, red, & purple mottled mess. No lesions have moved to my feet, but the colouring has. A possible foreshadowing of what is to come. One that leaves me fearful and worried when I'm completely honest with myself.

Despite their almost disgusting appearance, I have been very lucky. Most patients have developed pits and bumps because of their lesions. For the most part, my legs are even and smooth. Only their colour and cellular make-up has been irrevocably changed by this disease. And of course my already nearly non-existent self-esteem has taken a hard knock, but not a lasting one.

I don’t remember what exactly made me change my mind about covering up my legs. But I do remember that my loved ones made an effort not to bring up the change. In fact, I remember walking into the kitchen in shorts one Saturday, and hearing my Pops’ comment cut short by my Mommy’s elbow in his side. Poor man. He did tell me later than day (when Mommy was out of earshot) that I had nice legs and I shouldn’t hide them all the time. I took that comment to heart and rarely hide them now. And on good days, I agree with him. They are nice legs. There are a lot of women I know that wish they had 24 inch thighs. Now if the rest of me just matched. :D

For those of you who aren’t familiar with necrobiosis lipoidica diabeticorum, here is an overview of it.

And here are a few pictures of my legs and feet.

My Left Foot

My Right Foot

My Left Leg

My Right Leg

My Right Leg

That divot is not from the NLD. I had a benign tumor removed from a blood vessel there in February 2006.

My Right Ankle

Both of these are the outside of my Right Ankle. This is where the pressure ulcer was when I was diagnosed in June of 1991. I wrote about it here. The ankle is a bit misshapen because of the muscle tissue I lost, but to me it's beautiful because I nearly lost not just my ankle but my whole foot.


Bob P. said...

Thank you for your courage in posting this, for having the courage not only to provide words but photographs as well. While I'm deeply sorry that you have to deal with this, I'm glad to know a little bit about the condition.

karend1 said...

Thanks for posting you are very brave.

As you know I too have had NLD most of my diabetic life and my self esteem has suffered big time. I still hide my NLD at all costs and it has caused me not to enjoy certain aspects of the great outdoors which I love.

I think I could handle diabetes much better if it was not for this added plus.

Stacey D. said...

I've had this since I was 15 (going on 30 years with type 1). I do not wear shorts or skirts without high boots or very dark stockings. Although my loving husband thinks I have no reason to be ashamed, he's not a female. I was actually recently contemplating blogging about this myself. Thank you for sharing your story. Know that you're not alone.

karend1 said...

Ahhh another person with NLD, sad but makes me feel not so alone

Focus_ret said...

Not having diabetes, I know very little about the disease. What little I do know has been learned from you. Because of you, hopefully I will be more compassionate when I meet others who suffer from diabetes. Thank you for sharing these details.

But know it is not your skin (which I've never seen in person) but your spirit that I admire. Your skin is superficial, but your spirit is the essence of you, and your spirit shines through all distance despite illness and lesions. said...

I to suffer from NLD. In 2004 noticed a small white bump on my right leg. Later a biopsy was done, no sign of diabetes. Now both legs has the raised,hard,skin that peels off. Of course the dermatologist that I saw tried shots around one of the sites. The results of this was deep depressions around it and turning black. His comment was "he had never seen anything like it. Another doctor tried a cream without sucess. My primary doctor showed me the picture of this condition I ask him to write it down for me and he said its to long for him to do that. I told him I could write,which I have known him for years. In 2006 was when the doctor said I was Type 2, I take no meds for it at this time. But the pain,the places that are deeper than the rest of my leg. Seems like there would be more rearch on this condion. I to had great legs at one time. I'm grateful to still have them. I just noticed a place on my left wrist. I have been down with a very bad back for 2 years now and still suffer. But life will be good if they could just stop saying nothing can be done. I have showed so many people in the medical field and comments are they have never seen anything like it. Now if all the feelings of being ugly with all this could go away. I to don't dare show my legs. It is from the top of my ankles,calves,above the knees. I guess I have vented and felt sorry long enough. But you are in my prayers. CC from K2C.

genius786 said...

Thanx for sharing your knowledge about Cause, Symptoms and Treatment Necrobiosis Lipoidica

Jamie said...

I'm new to this disease and extremely scared. Any advice would help. I have a red pkasticy mark on my left ankle that's about the size of a golf ball. It scares me alot

Jamie said...

I'm new to this disease and extremely scared. Any advice would help. I have a red pkasticy mark on my left ankle that's about the size of a golf ball. It scares me alot

Warren Charlton said...

I just tattooed over mine. Hope it heals well

Linz said...

I have contemplated tattooing as well. How did it turn out?

Linz said...

I have contemplated tattooing as well. How did it turn out?

Brenda said...

My first red patch came about 4 years ago on bottom of left leg. I thought it was because of the stress of being on my feet for 10 hours a day at work. I now have 9 in different spots. Both legs. Yes this is frustrating as I Am a beach bum in the summer and love swimming. They are very painful to even just hit the corner of something on that spot. So worse than a bruise. Very very tender. I would like ratios as well but afraid of ink going into the blood. Help me to understand if tattooing is a good idea. I have one on my shoulder and would like more to cover my burn barks. I'm so glad this blog is here. I thought I was a rare commodity. ��