Choosing Steroids

There may be a light in the tunnel for me. I recently found out I'm vitamin D deficient, which, according to my new allergist, could be quickly supplemented for a highly likely improvement in my chronic eczema condition. We'll see.

My Steroid Treatment

In the meantime, a week ago, I caved and started a new steroid pack. It's always my last resort and I suffer for weeks, sometimes months with a bad flair-up before taking the prednisone steroid route.

60 milligrams a day were great! Down to 50 milligrams ... still okay, with an itch here and there. 40 milligrams ... nope. At 40 milligrams, with still a week left of steroid pills, my eczema started coming back on my neck. I knew it was going to come back hard again.

NOT AGAIN!

After finding out recently that I was indeed low on vitamin D, my eyes filled with tears of hope and happiness. The struggle has been real. For twelve years. When my eczema started returning during my current steroid pack, I decided enough was enough. I'm not doing this anymore. If there is medication available that will suppress (and not just treat) the symptoms, I will take it, regardless of the risks and side effects. I will not go back to work on Monday after my maternity leave ends with a red, swollen, oozy face, exhausted from staying up all night scratching my body. Under the supervision of my allergist, I'm taking 50 milligrams of prednisone per day for the next few weeks, while also using steroid creams as needed and taking probiotics and a ton of vitamin D supplements.

I choose a more comfortable life for now and hope the future is good to me and steroids stop being necessary. Between my vitamin D levels and soon-to-come eczema medications, I am still hopeful. Having hope is as good as it gets sometimes; I'm grateful for it and excited for the future. 

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My Vitamin D is Low! Great News!

Last week, after weeks of difficult flare-ups, I decided to try a new allergist. I've only used one and have had her for ten years. Although she's a well-recommended doctor, I felt I was in a slump. I was tired of steroids, the hot skin, the redness, the flakiness, the itchiness, the discomfort, the swelling, the horrible way I looked, the lack of sleep ... I needed to try something new. I wanted to stop the eczema altogether and not just treat it. Wishful thinking, I know. 

I went to my new allergist a few days ago and got retested. My amazing husband and baby came along to support me while I got stabbed with a trillion needles. Typically, the full back is used for the allergy test, but my lower and upper back were super flared up. I convinced the nurses and doctors to use the top of my legs (they finally cleared up a bit!) and parts of the top of my arm, along with the middle of my back. They were the only clear parts of my body and it was just enough for the allergy test! Score! 

 
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A trillion needle stabs later, the results showed I have super severe dust mite and cat allergies. I knew that. Oddly, all my food allergies were gone! My new doctor was very inquisitive and seemed super knowledgeable and experienced. He wanted to test my vitamin D levels, because in his experience it tends to be low with eczema patients. This was news to me! I got the blood results today and my vitamin D is low! This means I can get vitamin D supplements and hopefully my eczema gets much more under control. My doctor wants me to continue my allergy shots for the dust mite and cat allergies, but get much higher doses than what I was doing before with my old allergist.

New doctor, new results, new hope. This is the best day in a long time ... since I had my baby four months ago. I am so happy and hopeful today! Fingers crossed that I am on my last steroid pack now!

 
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Blissful Scratching

For this moment, let's put aside the wrongness of scratching - the bleeding, making-eczema-worse, scarring and addictive nature of it. Just for right now, let's only think about the glorious feelings scratching brings. 

1. It Feels So Good

Nothing, and I mean NOTHING, feels as good as scratching when the itching is unbearable. I really do mean nothing.

2. It's the Best Instant Gratification

Buying something you want, kissing your partner, taking a bite of your favorite food ... all are examples of good instant gratification situations. But, they don't compare to scratching, probably because it feels so uncomfortable before the scratching. I can buy things often, my guy is always smoochable and I'm not usually starving before I eat. I am, however, usually very, very itchy before I scratch. Maybe I've been lucky in life and in my health to think itching is the best instant gratification; for that I am grateful. And maybe I'll change my mind once my baby girl is born in a few weeks. We'll see. 

3. It's Self-Inducing Pleasure

Nobody has to do it for me. I have full control (or lack there of) for scratching my spots. I can do it any time and anywhere (sort of). And if I can't reach a spot, there's always something around that can be used: an unsharpened pencil, an Apple TV remote control, a backscratcher ... one can get very creative in the moment.

4. It Brings Relief

Although often temporary and short-lived, the seconds or minutes after the oh-feel-so-good scratching are so calm and quiet. The skin isn't screaming for attention. You can finally think about something other than the itching and need for scratching. Sometimes, when my skin happens to not be itchy, even before scratching, I pause a moment to reflect on the calmness of it. "Last night, I couldn't sleep because my legs were so unbearably itchy and today they are acting totally normal. It feels so good to not be trapped by my body."

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Bloody Sheets and the Eczema Miracle of Cold Water

I promise I'm not a masochist. But when I saw this duvet cover on West Elm's website, I had to have it for my bed. Was I worried about the big white section of the cover? Of course! White anything (clothes, bedding, pillows, blankets, etc) make me and my always-bleeding body very nervous. 

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So I set off in life with my new amazing bedding, constantly aware of my bleeding tendencies while on the bed. Here are a few things I did to avoid getting blood on the bed:

1. If I was laying on the bed and had exposed scabby skin, I'd put an unimportant blanket between the bed and me. 

2. I could say I avoided scratching while in bed, but we all know that's probably not totally true. Also, I have little control over what I do while I sleep! Plus, sometimes a scab bleeds even when you don't scratch it. I did try a little to not scratch, though.

3. I would cover my body with longer sleeved shirts and pants if I was laying on the bed. So blood wouldn't go directly on the bed if I bled.

Unfortunately, I didn't consider my being in the bed with my arms out of the sheets IN DIRECT CONTACT WITH THE WHITE SECTION of my gorgeous duvet cover. Hence, this morning's bloody mess.

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It ended up being a scab on my upper right arm that got me. Without thinking, I scratched my arm and placed it onto the cover. Nooooo! Here's what I quickly did:

1. Before doing anything to the stain, I got on Google. I didn't know exactly how to remove a blood stain from cotton sheets, but I knew that without confirmation or advice, I could inadvertently cause the stain to set in with whatever ill-informed method I tried. According to the world of the internet, rinsing the stain with cold water is almost always the first step.

2. I removed my duvet cover and put the bloodied section under cold water for about five to ten minutes. 

3. I went to the sink to remove the duvet cover and start on step two - I was going to wash it with shampoo. Then, a miracle happened. I couldn't even find the stain to start step 2! The cold water totally removed the blood on its own! Success!

CRITICAL: Rinse the stain in cold water AS SOON AS POSSIBLE. The longer the blood is in the sheets, the harder it will be to remove it. 

Thankfully, my husband saw the stain right away and I happened to bleed in the morning, not in the middle of the night. From now on, I'll be checking the duvet cover and sheets for blood when I make the bed every morning ... because I of course make the bed every morning like a responsible adult. ;) 

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A Letter to My Dog

From an Ezcema Fighter to a Tibetan Terrier Mix

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Dear Chester, 

Don't Wake Me Up in the Middle of the Night.

I don't care if you have to pee. You just peed a few hours ago. How do you hold it all day while I'm at work, but then need to pee every few hours as soon as I get home? Wait until the morning! And don't you dare pee in the house.  

You see, while you may go right back to sleep afterwards, I'll stay awake with a hundred little itches all over my body, keeping me awake as I see the clock tick tocking towards the early morning. I have work in the morning, for crying out loud! 

Sleep is a luxury for me and my eczema-covered body. So don't wake me up! 

Stay Away Sometimes, Time it Just Right, and Keep Loving Me

I love when you cuddle with me on the couch, but at this very moment I'm convinced that my flare-up was caused by you. Do you have allergens on your fur? Is it just an on/off dog allergy? I don't know, but you're making my skin itchy and my eye is swelling up. Try again next time; I'll probably be fine then. And keep loving me in the meantime.

Don't Expect to Go on a Walk - It's Too Hot Outside

Have you felt the temperature outside? We live in Houston and it's the summer! I can't be out there; my skin will get all sticky and itchy! I have eczema, remember?! Can you run around the back yard instead? That's good enough, right?

Remember That I Love You 

You must be totally confused. I give you so many mixed signals! I'm sorry. I love you to the moon and back. And I'm very lucky to have you. My eczema tends to take over my life at times and I haven't yet figured out how to balance it. Thank you for your patience and love. Tomorrow will be a better day; I'll give you lots of treats and hugs.

Love, 

Helen

Eczema in the Hot Summer

Anyone who has ever lived or even just been in Houston for one hour during the summer knows the heat and humidity horrors we go through. It is HOT. And HUMID. Thankfully, we love air conditioning and have it blowing super cold throughout every building. It's so cold inside and so muggy outside that my sunglasses and phone will literally fog up when I move from indoors to outdoors.

But enough about our summer weather. What does it have to do with eczema? Everything if your skin is flared up and needs to be covered. Think long sleeves and pants during the summer. It's not ideal, but sometimes it's preferable to exposing flared up skin or bloody scabs.

My legs and feet still look horrible after months. I've never had anything like this - it still looks like a ton of bug bites, but they won't heal, even with steroid cream. And it's so itchy! I know it's not just in my head, because I was with my two little twin 4-year-old nieces a few weeks ago and they asked me what was wrong with my legs. Little kids are super honest!

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Thankfully, I am in LOVE with wearing colorful tights and typically wear them year round, even when my legs are healthy and beautiful. The cold air conditioning throughout the city makes it reasonable to do so. Plus, Houstonians don't typically spend much time outside during the summer - it's too unbearable! Most importantly, eczema sufferers should stay out of the heat to avoid intensifying or causing flareups.

Pregnant with eczema

This is me last week doing my belly photos while 31 weeks pregnant. The tights were perfect for the outfit! Still, I'm fine bearing my legs when I'll be outside for awhile or just to be more comfortable. For example, in a few weeks when I get into my bikini, I'll be that pregnant chick with the big belly ... and the eczema-covered body. I'm sure the belly will steal the show, though!

How NOT to Deal with Eczema Bleeding

Bleeding is inevitable for eczema fighters. After my last bad flareup, my legs and feet were left with tons of scabs and very thin skin that bled super easily. Here are fun tips on how NOT to handle eczema bleeding:

1. Wear White

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2. Leave Blood Trails at Work

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3. Scratch Scabs Freely, Especially After Taking Off Your Socks

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4. Bleed in Toy Stores to Scare Kids

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5. Surround Yourself with White Hotel Sheets

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6. Make a Chocolate Mess at a Hotel to Distract from the Bloody Sheets You Leave Behind

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7. Carelessly Bleed on Your Home Decor

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8. Don't Moisturize Your Scabbed Skin, Making it Itchier and More Likely to Bleed

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Hopefully you can learn from my mistakes! Take care and keep smiling!

Skin Turning

I may not be a werewolf, but I sure feel like one when I say that my skin is turning. The good days lasted less than a week, but I sure enjoyed them while they were here. My face definitely started turning yesterday. The skin got itchier, turned red, warmed up, became thicker, then the red turned into more of a purple today and it's starting to look swollen. And it's still transforming now! The dry patches are getting dryer and the itchiness is pretty bad and it's hot to the touch. Can you tell the difference? I know I can!

My beautiful face two days ago!Β 

My beautiful face two days ago!Β 

Yesterday. Those who don't know me may think this is what I always look like, but not so! There are bags and lines under my eyes, my eyes look smaller altogether, my complexion is worse, and I just look like a bigger mess in a can't-put-your-finger-…

Yesterday. Those who don't know me may think this is what I always look like, but not so! There are bags and lines under my eyes, my eyes look smaller altogether, my complexion is worse, and I just look like a bigger mess in a can't-put-your-finger-on-it way.

And this is me today with purply red and swollen skin. Super itchy! And the transformation is still going on.

And this is me today with purply red and swollen skin. Super itchy! And the transformation is still going on.

If my doctor and pharmacist hadn't accidentally given me a 6-day steroid pack yesterday, I would be starting my steroid pill treatment right now. A 6-day pack is too fast; it needs to be a longer lasting treatment or else my eczema will bounce back harder than before. I need something for at least two weeks ... a full month ... forever! Okay, that's too long. Steroid pills are unhealthy, I know. But wouldn't it be great to have the healthy skin permanently?! Let's deal with one day at a time for now. I'll stay out of the Houston heat this weekend and will get the correct steroid pack on Monday, then I'm off for my second babymoon (this time with a best friend) in London and Scotland next weekend ... with what better be amazing skin!

Return to Normalcy!

It's been 3 good days in a row. I still can't believe it! My face is basically back to normal. No swelling, no shedding, no redness, no weeping. It's a tiny bit itchy and a tiny bit dry, but it looks fantastic.

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And much of my body has healed - my legs are still rashy, red, itchy and with scabs, but they are getting better.

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Why the miraculous recovery? I'm not totally sure. At the end of last week, I caved and started using steroid creams on my body. Soon after, my face cleared up. But I didn't use steroid creams on my face ... It's a little odd. My body is still itchy - not as bad as it was, but still itchy. I've been sleeping much better the last few days, but last night, I did have a disruptive night because of my itchy body. It's almost as if I still have eczema symptoms on a body that is disguising itself as normal. I think the reality is that my body is trying to stay flared up, but the steroid creams are pulling it back. An internal eczema fight! I know who I'm rooting for ...

Here's the deal on steroids and my pregnancy: I've been avoiding them throughout my entire pregnancy and it has been hell. My dermatologist and allergist told me to not take them and my OBGYN all along has said they are okay. I saw my OBGYN last Friday and asked why she had a different opinion. She said people tend to overreact with pregnant woman and very confidently said that steroid creams and pills are okay during pregnancy. She guaranteed that the medication doesn't cross the placenta. So yes, it's still a category C medication, where a woman should only take it if the benefits outweigh the risks, but the reality is that the risks are itty bitty. I take itty bitty risks all the time. Getting in my car and driving in the rain is a risk, for crying out loud.

So, I ordered a steroid pack. Coincidentally, my skin got better at the same time, so I didn't start it, but I plan on using it if my skin turns again. I'm not going back to how it has been the last five months. I'm going to focus on my pregnancy instead of my skin. I swear, I can feel her kicking more all of a sudden. It's probably because I'm not obsessing over my itchy skin. I am full of hope, optimism and happiness right now! 

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A Good Day!

I slept last night! It had been over a week of sleeping only a few hours at a time for a maximum of five hours a night, if lucky. My upper back and neck have been super weepy, especially at night. I obsessively use kleenex to cover and contain the area, but it would last through the morning. This is what it looked like just a few mornings ago (with a little kleenex hanging around):

Not last night, though! I put in ear plugs and was able to sleep through most of the night without being woken up by my skin. I feel fantastic! I also started using steroid creams a bit the last few days, so I'm able to bend my elbows much more comf…

Not last night, though! I put in ear plugs and was able to sleep through most of the night without being woken up by my skin. I feel fantastic! I also started using steroid creams a bit the last few days, so I'm able to bend my elbows much more comfortably. My neck is still very raw, so it's hard to turn it to the sides, but I'm still feeling good about things. Here is a look at my neck while I was waiting to see my OBGYN this afternoon. 

Eczema raw skin

Today has mainly been a day of dry shedding, with bearable itching. (The shedding has been out of this world the last few weeks. I'll write a separate post about it altogether.) And my face looked pretty flaky all day and night, but it didn't bother me - I went out to dinner, spent time with friends, had close conversations with coworkers, talked to my OBGYN about my pregnancy and heard my baby's heartbeat! It is what it is and today was positive enough to feel good about life! 

Flaky eczema face

Itchy, Oozy Babymoon

The last few weeks, I have been very itchy, but my skin has mostly been super dry, red and with tons of shedding. A big flareup happened at home the night before my babymoon. I barely slept and woke up with my arms and neck skin swollen and weeping. My face wasn't horrible, although it was itchy and a little swollen. I hoped it'd all get better at the babymoon hotel - maybe I could even catch up on sleep, like I did a few months ago in the San Francisco hotel. Nope. My skin only has only worsened at the beautiful San Antonio hotel and I'm now going through a very wet, miserable eczema flareup. It doesn't help that most places here are pretty warm even though they are supposedly air conditioned. I miss my Houston, overly air conditioned businesses! 

I'm reaching my tipping point. I thought it was my house, maybe my dog, causing my huge and constant flareups during my pregnancy, but here I am on my babymoon not jumping into the awesome hotel pool or getting a couple's massage with my husband. Babymoon fail. I'm tired of being miserable. I'm sick of talking about my stupid skin. I want it to all go away! I envy literally everyone around me - they have no idea how lucky they are for having healthy skin. My eczema is on most of my body (including my face) and it's weeping, crusty, smelly and torturous. I woke up today after finally sleeping for a few hours and I could not stretch the skin on my face or neck. And I was sticky everywhere. So disgusting. I feel trapped by my own skin. It's been five months and I don't know how much longer I can take it. I want a steroid pack! And I want to get back on my herbal pills that were helping keep my skin under control before I got pregnant. Both treatments not recommended during pregnancy.

Will my next pregnancy be like this also? Am I going to have to stop at one kid because of eczema?! Sounds so ridiculous at a high level, but not while living every minute of this itchy, miserable time. A steroid pack is looking extra shiny right now.  

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Short Hair for Eczema

When my hair is long, it looks pretty good. Freshly washed, with no product, my low-frizz natural waves are nothing to complain about. 

I usually don't wash it every day and opt for every 3 or 4 days. It doesn't look as great towards the end, but isn't bad.

Except ... when I have serious eczema on my face. The last few months, I've become the gal with the dirty, flaky hair in a ponytail. 

My routine is to moisturize my face heavily. My face gets all greasy, and my hairline does too. A few hours later, my face becomes super flaky and my skin starts peeling. In addition to my scalp being flaky along with the rest of my skin, my face sheds onto my hair! And then I end up looking like an even bigger mess. You'd think I'd want to wash my hair multiple times a day, but the reality is that when my eczema is moderate to severe all over my body, as it has been, I dread showers. They hurt! A lot. So I want to get in and out as fast as possible. Often, I skip washing my hair. A girl can only take so much! 

Last night, I left a party early, because I was ridiculously itchy all over my body. I knew I had to shower and that my hair had to get cleaned, but I was afraid of getting in the water. My hubbie came to my rescue! He washed my long hair over the tub. Once it was clean, I jumped in the shower and cleaned up as fast as possible. We realized I should cut my hair off, so I could easily and quickly wash it during my showers. Brilliant idea! So I cut it all off today!

Luckily, I love having short hair and I can pull it off pretty well and easily. It may not look great with a red, flaky, eczema-filled face, but long hair doesn't look good that way either!

What's the Best Eczema Product?

I often get asked for my opinion on the eczema product that works the best. In my opinion, it depends on the severity of the flare-up. For me, when my eczema is really, really bad, no eczema product helps and most hurt. Even water hurts! The only thing that helps is my body choosing to get its act together ... or a steroid pack that will force my body to temporarily behave.

Below is what I typically use lately. But this is just one opinion; I'm sure other products work and I'll probably change things up later. I've heard a few only-eczema-product-that-worked stories from fellow eczema fighters and I take those recommendations seriously. I've created a product list here that I'll keep updating as I hear new recommendations. 

Eczema Products that Work for Me:

During Healthy Skin

  • Aquaphor on my face
  • Aveeno lotion on my body

Note: I trust most fragrance free products at this point.

During Mild Eczema

  • Aquaphor on my face
  • Neosporin Eczema Essentials Daily Moisturizing Cream on my body
  • Gold Bond Anti-Itch Lotion on my body

Note: I trust most eczema products at this point, as long as they are fragrance free, since I have a fragrance allergy.

During Moderate Eczema

  • Aquaphor on my face
  • Neosporin Eczema Essentials Anti Itch Cream on my flare-up spots

During Severe Eczema

  • Vaseline on my face - only thing that can keep my face hydrated when I re-apply every two hours.
  • Nothing on my body

Note: Aquaphor hurts my skin during severe eczema. It really heats up the skin wherever it's applied, which makes it itchier and more enflamed. In addition, most eczema products, including products I regularly use on my body like the Neosporin Anti Itch cream, seriously burn my skin for at least five minutes. And minutes later, it's itchy again! Not worth it. I just skip using products unless I absolutely need to hydrate, like on my face, which will get so dry that I can't even smile or talk. In this case, only vaseline helps and it doesn't burn. 

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It's Your House, Silly!

Something big is happening. I'm getting closer to understanding my body. I've known it was trying to tell me something for years, but I just had no idea what it was saying. There were many unsuccessful guesses and a lot of giving up. About two weeks ago, my eczema became less about itchy, dry skin (although that was still there) and more about swollen eyes and a super hot (not in a good way), red face. And sleep was impossible. What the heck was going on?

So I went to California with an itchy body and a face I would've rather not taken out of the house. It was not the best way to mingle with my in-laws and extended family. Something great happened, though! My skin got better and better as I spent more time in California. Yes, California is great, but it's not a miracle remedy! By the time I left California, my face and skin was so much healthier. I got to back home and within 24 hours, my body screamed louder than ever before with something I'd never experienced. As I was trying to sleep, I noticed my eyes were leaking. Like a faucet! If I was on my left side, my left eye was running so much that I had sticky clear/light yellow liquid all over my left cheek. I was using tissue on my eye to keep it from getting super messy on my bed. It's gross, I know. I turned to the right side and it became my right eye that started leaking. I finally fell asleep super late holding tissues to my eyes. I woke up still on my right side and my right eye was so swollen I could barely open it (not exaggerating!). Holy moly, it was my house. My body was reacting to something in my house. 

Of course, I've done things already to help with my allergies at home. I have no carpet, avoid upholstered furniture, encase my bed, etc. But it wasn't good enough. My second day back home, I went to extreme measures. I washed all my bedding and pillows in the allergiene setting of my LG washer and dried it all in the steam setting. Included in the load was my new pregnancy boppy body pillow that I'd been using for a few weeks, but had never washed. My husband washed the walls of our bedroom. I pulled out some of the area rugs we have and put them in the garage. I washed my dog's doggie bed and, just to be safe, I washed my dog also. It was a busy night. And guess what? I was able to sleep that night and I looked better when I woke up! The next night, I was itchy on my body (maybe because my dog got on my bed during the day). I changed the sheets and the next night I slept perfectly! Am I allergic to dogs? Technically, yes. But, wait, hear me out! I'm technically allergic to tons of things and, even when avoiding them, I haven't found a direct correlation with my eczema. It may be that my dog Chester goes outside and gets seasonal allergens on his fur and he brings them in the house and my bed. It could be that it's not just Chester and is a combination of things, including dust mites, another allergen for me. 

Things aren't super clear yet, but I'm better understanding what my body is telling me. And I feel hope. HOPE. An eczema fighter needs hope. To see my body heal so quickly and become unhealthy so fast, depending on the presence of the trigger makes me feel better, because it means I can remove x, y, z and my skin will heal. I'd much rather have horrible skin when there's a trigger versus having chronic unhealthy skin for no reason and with no solution. 

So with my new found hope, I will keep changing things at home to fix my skin and avoid allergic reactions. Here I go!

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Steroid Conundrum While Pregnant

The thing about chronic eczema is that it needs to be treated continuously. If you're lucky, you'll find something that works for a good amount of time. Nothing will work forever, since the body changes and adapts. For me, herbal pills seem to help.

Steroid packs help, of course, but they're not great. Once the pack is finished, the body rebounds pretty hard at times and the eczema comes right back, maybe even worse. Wouldn't it be wonderful if steroid packs had zero negative side effects and could be taken forever? The reality is that they're pretty unhealthy and I try to avoid them as much as possible. What about steroid creams? I gave those up years ago after I lathered myself with them for years. I am quite certain that I permanently damaged my skin around my eyes and mouth (two main eczema-prone spots for me) and will likely look like a 120-year-old by the time I'm 60. Thus, I am super hesitant about using steroid creams. 

Insert my pregnancy into the mix. Now I'm unable to take my herbal pills and my eczema has crept into unbearable levels. My dermatologist confirmed the mess on my face is indeed eczema and nothing else. She gave me steroid creams and told me to hold off on the steroid pack, since "it could be worse." (It could be worse! Oh, eczema.) Both steroid creams and steroid packs are category C treatments. In the pregnancy world, category C is a label used for products that have been known to hurt animal fetuses, but enough studies haven't been done to confirm the same for humans. A pregnant woman is advised to only use category C products if the benefits outweigh the risks. Well, damn. Put that way, I'm going to avoid all category C products unless absolutely necessary. I'd rather not sleep well and tear my skin out rather than hurt the growing baby inside me. My dermatologist confirmed the munchkin isn't getting hurt by my flare-up. It's all superficial and only felt by me. Except the not sleeping well, of course. 

So I will continue to hold off. If, later on, I'm so unhealthy that it's affecting my pregnancy, I'll reconsider the steroid creams and packs. Even though my OBGYN is okay with my taking the medications, I'd rather stay on the safe side. Scratch, scratch, scratch ...

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