Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Slowly Scorching My Own Skin: What I Didn’t Know Was Hurting Me


Sunset

“There is no need to suffer silently and there is no shame in seeking help.”

- Joel S.Manuel

My quest to stay warm and fight my Raynaud’s symptoms began long before I knew what Raynaud’s was or got my “official diagnosis”. I’ve shared some of my “heat hacks”; tactics I’ve found that help keep me warm and as mobile as possible when I need to be so I can still try my best to do the things I love and want to do. I don’t always succeed, I know I have to be aware of my limits, take better care of myself, and I sometimes have setbacks. But I’m trying and not ever going to give up. This post though, is about the worst “heat hack fail” I’ve ever had and I’m hoping it might serve as a warning to help others, encourage everyone to speak out, and push everyone to keep trying too. We shouldn’t have to accept being miserable, risk ourselves, or be afraid of something and not be able to at least try to find solutions and answers. And we need to make sure our loved ones, doctors, etc. HEAR US!

I’ve always been incredibly health conscious. I’ll admit to the point of sometimes being a hypochondriac. Growing up with parents in medicine who had the best intentions, but were overprotective in some ways, didn’t help. I’m also a worrier, over thinker, and my own anxiety works against me with health concerns. Thinking the lump and bruise on my leg from my book bag was cancer was a perfect example of my “worst case possible” mentality with health issues. I was sure I had breast cancer when I was twelve too. I think I’ve become a lot better about it now that I’m trying to accept and get used to dealing with my less well known chronic conditions. But I still strongly believe that if you’re worried enough about something, your gut is telling you something isn’t right, and you know it’s going to keep bothering you then go have it checked out. Sometimes making sure and your peace of mind is worth the trouble and effort, even if it can be scary or a pain to go through. Make sure you’re heard because, as cliché as it sounds, it’s better to be safe than regret or have something get worse. It’s worth fighting for your health and quality of life.

I had a situation like what I just described come up right when I got my official Raynaud’s diagnosis. I’ve always had a bit of a “mottling pattern” on my legs- that kind of splotchy reddish, blueish, purplish look. I even had a biopsy done of it near my ankle about twelve years ago when I first started seeing a dermatologist for mole checks. It came back as normal tissue so I didn’t think much about it. However, after my friend who has Scleroderma asked me if I had Raynaud’s, I started to really think about how cold I really had been for most of my life. I realized how many attacks I had in the past that I didn’t know were attacks. I started going over in my head all of the things I had started doing to try to get warmed up again or stay warm. Things I didn’t talk about or tell anyone about because, in hindsight, I was afraid people would judge me, think I was weird or there was something wrong with me, or be worried about me. I didn’t want to face any of that. So I tried to do these things to keep warm, be as normal as possible, and function. I love cold foods and drinks (cruel irony with Raynaud’s) but I tend to get attacks when I eat. When I was an undergrad in San Diego and living alone I noticed that the heat from a hair dryer was pretty warm and it was easy to plug in by the coffee table where I ate and watched TV. So I started propping my hair dryer up on the table to blow hot air on me when I was eating my dinner. It seemed like a resourceful idea and it worked; I wouldn’t get as cold and it helped prevent attack while I ate. It worked well for a while, but then as time went on when I’d have my frozen yogurt (I have to have it as my desert) I’d start to freeze up badly again. I don’t remember when I started exactly, but one night I must have taken the hair dryer, propped it up between my knees, and had it blow the hot air under my shirt and sweatshirt so it would warm my core up. That felt wonderful and helped a lot! I can’t remember exactly when I started doing that every night but it was about a few years before I got my Raynaud’s diagnosis. I was learning as much as I could about Raynaud’s online and from the groups: the symptoms, the effects, what I could cause, what to watch out for. I was paying more careful attention to my body, what I was seeing and feeling. I noticed my stomach- the mottling patten seemed to stand out quite a bit on my lower abdomen.

At first I thought it was just my skin and the mottling but the more I thought about it the more I began to wonder if there was more to it. I posted asking about it in the Raynaud’s groups. Some members commented about livedo reticularis. I started researching that and it goes along the same lines as the mottling pattern- more like harmless coloration and a lot of people who have Raynaud’s do have livedo reticularis. At first I thought “that must be it”! But I couldn’t shake that feeling there was more to it. When I went in to see my doctor for my next appointment I asked her about it. She examined the skin on my lower abdomen and started asking me if I’d been repeatedly exposing it to any direct heat. I hadn’t even really thought about the hair dryer but I told her what I had been doing and she said she thought the discoloration on my lower abdomen was erythema ab igne- a condition that occurs on the skin when it’s being slowly damaged from continuous heat. Some women get it from directly applying heating pads often to relieve pain. In the worst case if the damage gets bad enough there is a small chance it can turn into cancer. I was terrified and felt awful and scared. How could I do this to myself without even knowing? And I wondered “how could this be happening to me? First facing the Raynaud’s and now this?!?!” Luckily my damage was not that far advanced and when you remove the continuous direct heat the odds are good your skin will heal and the discoloration will go away on its own.

I was also afraid, angry, and frustrated. It didn’t seem fair and I didn’t want to give up eating the foods I loved either! I’ve a hard enough time finding foods I even like and can tolerate. I didn’t realize how dependent I’d become on that stupid hair dryer or how much it helped keep me warm. My doctor was extremely understanding and comforting though. She worked with me to come up with other things to try, and as long as I keep layers between the direct heat source and my skin she said I should be ok and it should hopefully heal and not come back. Luckily that’s what happened. But at first I was afraid; I don’t do well with change. But in the end I learned from it, regrouped, and now I wear layers all the time, make sure I have a layer between me and my heated jacket, heated blanket, or space heater. I got rid of the hair dryer. I’m so grateful after a few months the erythema ab igne healed and went away. My stomach looks much better now, you can’t even tell I had it. I’m still able to eat and drink what I like- as long as I’m bundled up and prepared. I’m so glad I trusted my gut (literally!) and didn’t ignore the fact that I knew there was something more to it- that something was actually wrong. So keep warm, but be careful and don’t be afraid to ask and speak up if something doesn’t seem right! It isn’t worth the risk and there are solutions out there!

Until next Friday,

Amy L.

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