Swollen Face Holes

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Summer lasts much too long. I’ve always thought that. But now that I’m randomly started to break down in my thirties, I’m sure of it. After a random conversation with my mother (who is the only person on the planet patient enough to listen to my whining about this for well over a year now) about my randomly swollen and super freaking itchy bottom lip (everyone likes to look like they’ve been punched) and left ring finger (just…why!?) I figured I should share all my lessons with the world.

Random Things I’ve learned:

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  1. Certain body parts are hard to itch. I’m not one of those people that can ignore an itch. And there is no itch quite like eczema. I routinely tear my skin to shreds. It’s my superpower. However, just because you’ve never had an itch to end all itches on your eyelid or lower lip or fingertip, doesn’t mean they can’t itch. They can. With the power of all the fire ants in the world. And there is literally NO good way to itch these places. When they aren’t itching I know you probably shouldn’t itch them anyway, but when things get really bad I don’t care about should and shouldn’t. I care about tearing off the itchy parts so I can sleep. Go ahead and think of all the really sensitive or oddly shaped parts of your body. Imagine all the mosquitos and fire ants had a convention on that part. And try to figure out how you’d scratch it. Then teach me.

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  1. Doctors get brutal. I have a lovely endocrinologist, sincerely. She’s wicked smart and funny. She’s an exercise nut and looks great. She has been instrumental in helping me feel like I’m finally getting on the right track with my health. I’ve been on several medications that have made me feel SO much better. However, part of what I want, and what she wants, is weight loss. This last appointment she walked in, looked at my chart, and asked how things were. I went on about how much better I felt, that my symptoms were starting to ease off a bit, that I felt like I had some control for the first time in a very long time. She nodded. Looked me dead in the eyes after I just professed my thanks to her for helping me so much. And said, “Yeah, but you haven’t lost any weight at all.” First off, rude. Second off, I was thanking you! I was right in the middle of “you’re the best!” Now, what am I supposed to do? Take that back? “You were the best until you said that, now you’re a butthole.”
  2. No one wants to hear you whine. I mean, no one wanted to when you were a kid either. But you were too stupid to notice your parents were just tuning you out. I want to whine constantly. I want someone to put a cool washcloth on my forehead and “there there” me sometimes. Instead, now that I’m an adult, everyone wants me to use coconut oil or essential oils to cure everything. Foot hurts? Oil up that bad boy! Hair falling out? Essential oils mixed in coconut oil and left on the scalp for 352.3 hours every night will fix you right up! Entire body itching like a demon-possessed mange victim? Peppermint and eucalyptus essential oil mixed into extra virgin NON PRESSED coconut oil, mixed in a quartz bowl that has been charged by a full moon, waller around in your tub until you’re slicked up like a porpoise and frolic around without a care in the world. 1. Coconut oil doesn’t cure much of anything. At all. Sorry. 2. Essential oils stink. Again, I’m sorry, but it needed to be said. 3. Applying stinky oil to my skin does nothing but make me angry, stinky, and itchy. And also prone to slipping and breaking. I’m falling apart. The hips are going next. I just want to whine about the fact it’s impossible to adequately scratch yourself without people on the bus thinking you have a disease. Which you do. But still. You know what I’m saying here.

Louise

Now what does any of this have to do with summer? Which was my first whine of this thing? Summer = sweat and sun. I sweat like a man. It’s super attractive I’m sure, but I break a sweat real freaking quick. And fun fact, sun exposure and sweat make an itchy soul itch that much worse. I’m basically hiding inside trying to avoid sweating at all costs. In Nashville. In August. It’s impossible! Here’s to aging. It’s a blast so far.

Medications and Plagues sent by God.

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Dramatic title, I know, but I’m feeling dramatic today.

This won’t apply or resonate with everyone, but in case you are struggling with Atopic Dermatitis, Eczema, Eucresa, steroids, or Dupixent, I figured I’d throw my personal experience into the mix and maybe give someone a heads up or a “you’re totes normal” for moral support.

Eczema (atopic dermatitis) is something a lot of people struggle with, but for the most severe cases it often starts in childhood. I am lucky that that was not the case for me. I had a severe flare up in high school that was treated and went into remission for years. It wasn’t even diagnosed as eczema. Many years later I worked in a lab setting and had to wear latex gloves. My hands started to react and I was diagnosed with eczema, told to avoid latex, and given steroids that took care of the issue. Lately, I had a couple small spots that wouldn’t heal and those small spots suddenly led to a large flare up.  So I went back to the doctor (under the impression this was not a big deal and the fix would be simple and quick). I was put on prednisone and Eucrisa. Due to the history they suggested Dupixent. I still had no idea how bad it could be. There was a mix up with the Dupixent prescription and I went off the prednisone. The flare-up was like a literal fire that has been given a strong wind to stoke it. My entire body flared, the only portion of me that didn’t have some sort of lesion was my feet. There was no sleeping, showers were a misery, I wore black to hide the fact most of my body was raw and bloody and it soaked through my clothes regularly, and I battled what I’m guessing was situational depression. I was absolutely miserable and had no relief, it was a constant horrible sensation.

Since that time I’ve done quite a bit of research and have fought multiple battles with the doctor’s office. I don’t know why my experience with atopic dermatitis has been atypical, and I still have no idea what my triggers are (aside from gloves which I do not come into contact with anymore). I have been giving myself injections of Dupixent for about 2 months now and while I’m by no means in full remission, I was able to wean myself off of the steroids and use Eucrisa only in my worst problem areas.

I do have side effects with Dupixent and have been blundering through trying to find ways to cope. Today I’m actually home instead of at work because my side effects are too severe to go in. Hopefully, tomorrow will be better. Now, as with any medication, not everyone will have side effects, and if you do they may not be the same as mine. But if you do have side effects, and you’re looking for relief, hopefully, some of these tips will help.

  • Eye irritation (conjunctivitis, pink eye, etc.). Some people have this to a severe degree but mine has been limited to a couple days after the injection thus far. The optometrist recommended Refresh Advance eye drops and gel drops. Eye drops at least 4 times a day and gel drops before bed as they make your vision fuzzy. Both are otc. They’re magic.
  • Skin irritation around the eyes (especially eyelids and under eye areas). This area is never going to go back to normal, I’m pretty sure. The skin stays extremely swollen and looks kind of like elephant skin. The crease in my eyelids breaks open occasionally and that’s always a good look. The skin goes from weepy and oozy to dry and crusty. It does not look attractive. I have come to love Vanicream. Walgreens has a pound tub of it with a pump. I smear that on until I can’t open my eyes and let it soak in. I stopped using Eucrisa in that area because the burning had become so severe I just can’t deal with it anymore. And I’m not a wimp, I don’t mind a little stinging, but this would take my breath away and make me want to vomit. So I’m sticking with Vanicream.
  • Headaches behind the eyes. These aren’t migraine strength but have the tendency to turn into migraines if I don’t deal with them quickly. I’m an Excedrin migraine girl, even with normal headaches, but any sort of pain med would probably work.
  • Irritation of my lips. The corners of my mouth split open, kind of like the joker. While this would happen with eczema it seems the Dupixent makes it impossible to clear it up completely.
  • General blah feeling. It goes away within a few days and isn’t a deal breaker. Honestly, despite not enjoying these side effects, none of them are deal breakers. Things were so bad before I’ll take whatever.

 

Other useful items: Cetaphil facial soaps, creams, etc. These aren’t quite thick enough for the irritation I have going right now but they’re lovely under makeup and as a maintenance item. Masks you can stick in the fridge or microwave feel fantastic. The optometrist recommended the heated one to increase oil production into the tears you naturally produce, and the cooling feeling is delightful on the angry tissue around my eyes. Despite Youtube recommendations, most dermatologists don’t recommend elimination diets as it is rarely a food reaction causing the flare-ups.

It’s scary that there are so few options to deal with severe flare-ups, especially when I don’t know why it happened. I don’t want this to be my new normal, but I’m trying to roll with the punches and not let it affect my mood/outlook. If you have experienced any of this feel free to weigh in. It helps to know you aren’t alone.