Progess Pictures 5 Months In

I haven’t posted in a really long time hehe. Sorry about that! I had a huge breakdown, so I’m going to counselling now.

Skin-wise, things are okay. Some things are better, and some are worse.

I know people say that diet and supplements don’t affect our skin, but I noticed that my skin got worse once I stopped taking my supplements (evening primrose oil, vitamin D, zinc, and red krill oil). I started taking them again 2 days ago, and my skin has improved. My face is less flaky.

I have a feeling it’s the zinc, but it could just be coincidence. Does anyone else take zinc?

Mariella

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A Letter from my Future Self

My skin survived the work week! Through daily makeup, poor eating, and very little sleep, it behaved! 😀 Don’t get me wrong–it was flaky pretty much every single day. But it wasn’t a big deal, and it didn’t make me want to hide in my room. I was surprisingly fine with it (I had to survey to a lot of people up close and personal). That probably has something to do with the fact that I was being payed haha!

Anyways, I don’t know if you believe in astrology and horoscopes or not (I don’t even know if I believe in them half the time), but I do read my horoscope every day. Sometimes it’s eerily accurate, and other times it’s completely off (I just ignore those ones hehe). Yesterday, it was accurate AND thought provoking. Those are the best kind.

Here it is:

“Imagine writing a letter to yourself in the past:

‘Dear person I used to be, There is no need to be upset about half the issues that are bugging you because they really aren’t as problematic as they seem.

P.S. You are coming up to a point when everything starts to be making a lot more sense.

Yours sincerely, the person you later became!’

You may not be able to send such a message back from the present, but you can certainly receive one from your future self, right now!…”

I’ve written letters to my future self, but never from my future self. I guess now would be a good time to start, so here goes:

Dear Present Mariella,

You’re going through some crappy times right now. You’re going through something that will break you down and leave you to pick up the pieces (You know all too well that I mean that literally, what with the incessant flaking). But as sucky as it is, you will be better and stronger because of it.  Every dream that you have, you’ll reach, because once you’re better, nothing’s going to hold you back.

I know that your biggest worry is that your skin will never go back to normal, so I have to tell you that you’re right.

Your skin will be the best its ever been!  I can attest to that because, well, I’m living in it, and I’m loving it. No more long sleeves and scarves for you, no sir! You’re on your way to freedom, so smile, take a deep breath, and dust off those t-shirts! Everything will be fine. You will be fine, so don’t worry.

Sincerely,

Future Mariella 🙂

What would you write to your present self?

Ready to Face the World

As the title says, I’m ready to face the world. I’ve been out and about this past week, and besides the unfamiliar fatigue and bags under my eyes (I’m not used to waking up before 5 pm!), I feel pretty good!

My face is so much better. With each day, the flakes become less and less. Plus, my right hand is amazingly smooth! I’ve had elephant skin on both hands from the get-go, so it’s an awesome reminder that my body is healing. It just takes forever and a day!

I have this unfamiliar joie de vivre (ya know, I’m a typical teen, blasé when it comes to just about everything). This withdrawal really does change you! After all the damage it’s done to my self-esteem and my social life, I just want to get out there and live! I just want to exist somewhere outside of the internet.

So I got a job. And I’m writing for a website again. Of course I’ve taken precautions–I’m not so rash as to assume that I’m out of the woods just yet. The job’s only a week long, and the writing gig is mostly opinion-based, void of face-to-face interviews (okay, so maybe that doesn’t exactly count as “getting out there,” but who cares?). If my skin decides to go haywire anytime soon, it won’t matter!

I think this all goes without saying, when your skin gets better, enjoy it! Take advantage of the smoothness and the itch-free moments, because you don’t know when it’s going to change. Of course, we always hope that each flare will be our last, but we’re never sure. So seize the moment! And if you haven’t had the moment yet, or you’ve just entered another flare, hold on to the memory of perfect skin. It’ll be reality soon enough.

Mariella

The Dreaded Doctor

I’m sure that if you’re going through TSW, or any kind of skin problem for that matter, you’re no stranger to the doctor’s office. A rash sprouts up. You don’t know what’s wrong. You do a google search to see what it is. Your self-diagnosis is folliculitis, or a staph infection etc, so you go to the doctor expecting a very specific medication that will rid you of the annoying rash.

What’s the doctor’s diagnosis? “Eczema.”

“But I’ve had eczema all my life, and it’s never looked like this.”

“Well, clearly it’s mutated*. You have to control it.”

With highly potent topical steroids, of course, that “have no long-term effects other than skin-thinning. And even that’s unlikely.”

Doctors are astounding salespeople. They can sell paper bags filled with dog poop, the way they make steroids and immunosuppressants seem completely harmless. When it came to prescribing Elidel, my dermatologist said, “We use it for babies.”

A simple google search shows that prolonged use of Elidel can lead to skin cancer. This is an extreme case probably, and I’m sure there are doctors who would argue that many things nowadays can give you cancer. Just think of cell phones.

However, we don’t give babies cell phones. Likewise, we shouldn’t give babies Elidel. Or topical steroids. And if we’re not going to give these creams to babies, we might as well stop giving them to kids, too. Ditto for teens and adults. Instead, we should be actively trying to find safer ways of healing eczema. Not masking it.

But that’s the thing with most, if not all, drugs. They hurt us as much as they “heal” our symptoms. Everyone with TSW is living proof of that.

Having said all of this, doctors should still be consulted, albeit for non-TSW issues. Unless of course your doctor is amazing and actually accepts it.

When I got a cold sore, I didn’t think anything of it health-wise. I was horrified by the sight of it, but I knew it would go away. Unfortunately, as it healed, more popped up. The virus infected my eczema. THAT was horrific. It spread to my neck and cheeks, but I thought, this will go away too.

It didn’t, and I finally caved and went to the doctor. Apparently, the infection was so serious that if it spread to my eyes, it could permanently damage my eyesight. He prescribed anti-viral medication, and I gladly used it.

With all that’s happened because of prescriptions, I used to feel like I would never go to a doctor again. But after that situation, I realised that that’s foolish. If TSW is to teach us anything, it’s that we have to take our health into our own hands. That doesn’t mean avoiding doctors. That means going to the doctor when we have a problem, and listening to their medical opinion (surely they must have learned something useful in med school), while also doing our own research into their diagnosis. Perhaps that means reading about the drugs they prescribe, or even sifting through a blog about topical steroid withdrawal. We just can’t take everything they say at face value.

Another thing that I’ve learned: trust your gut. Even though you may not be a doctor, you know your body better than they do. I knew that my TSW wasn’t eczema because it was nothing like the rashes I’d had all throughout my childhood. I had no textbook knowledge of eczema, but I had knowledge from my experience.

That counts for something.

Mariella

 

*Those were his actual words…

My Skin So Far (with pictures!)

This is an overview of how my skin has been so far.

July-August 2012: This was around the beginning of my withdrawal (I stopped using topical steroids on June 23, 2012). The rash began with red bumps on the crooks of my arms, my neck, and my back. After a few days, the bumps started to flake, while other bumps popped up on the underside of my arm. All the effected areas started to darken. My skin felt itchy and EXTREMELY dry. I had to moisturize constantly– even in the middle of the night!

On July 1, my neck and chest were extremely red and dry. I sat out in the sun the following two mornings, and all of that skin flaked off to reveal smooth skin. It was still discoloured, but it otherwise looked like normal skin. Since then, my neck and chest have been the best areas of my TSW skin. The other areas remained flaky, and the rash spread to the rest of my torso. About half-way through July, the extreme dryness went away, and was replaced with moderate dryness. The rash spread to my eyes around the end of July.

August-September 2012: The rash began spreading to my legs, while my eyes got slightly better. The rest of my body was covered in flakes every day. Absolutely no improvements despite the crazy flaking.

My face started to get worse in the second half of August. I got a big rash on my forehead and both of my cheeks.

September-October: I got stressed out with school approaching, so I got a cold sore. The cold sore caused even more stress, and the virus ended up infecting my cheek and neck. I got medication, and that went away quickly. My skin was still covered in flakes, but they became less and less as September progressed.

October: My skin retains moisture a lot better now, it barely itches, and it’s lightening up in teeny patches. Appearance-wise, it still looks the way it did two months ago, but it feels much better, and that’s a big deal. After all, it’s impossible to not think about your skin when it feels super dry and itchy! My forehead is a lot better, too. The skin has finally healed after almost two months of constant flaking. It still has tiny flakes, but I actually appreciate them because they’re fading the discolouration.

On the down side, the rest of my face has gotten worse. My left cheek is really rashy, and my chin is getting bad too. Hopefully they’ll get better in time for my birthday!

Mariella

Being Flaky Makes Me Flaky

So I recently made the decision to drop out of school. It was a long, daunting process that involved a few sleepless nights. I think I knew for a while that I didn’t want to go back. I worried that my neck would suddenly start oozing halfway through the semester, or that my eyelids would get all wrinkly. Nonetheless, I thought I could handle it, seeing as my skin really wasn’t all that bad.

But my vanity got the best of me–I just couldn’t bear having to go to school with this face! That’s probably one of the worst things about TSW. I have absolutely no control over it. So many plans have been cancelled or outright ignored because on the day of, my skin just doesn’t deliver.

I feel so self-conscious, even with makeup (actually, I feel uglier with foundation because it doesn’t even mask the discolouration completely, and it makes the flakes more prominent!). I feel like my skin is all people look at while I’m talking to them. I know that’s not true (probably…), but I just can’t get myself to believe it.

It’s just so much easier to not go out at all when I’m feeling ugly. I don’t have to do my hair, or put on makeup. I don’t have to waste time finding an outfit that will cover my skin. I can look as ugly as I want, and I really will not care.

Unfortunately, I can only feel this comfortable in my skin at home. So I don’t go out. I don’t put any effort into putting myself out there, or actually living life. It’s pathetic, I know. The world is passing me by, but I’d rather stay in my pajamas all day and watch movies than greet it head on.

But like Dumbledore said, I have to face the choice between what is right, and what is easy. I’ve been in this rut for so long that I have to force myself to go out! It won’t be pleasant at first, but I think I’ll get the hang of it eventually. Hopefully. Ughhhh, how wonderful life will be when my skin is healed!

Mariella

 

How it All Began

Bonjour,

I’m 98 days into withdrawal, and I unfortunately haven’t documented anything before now. However, luckily for you, I do have a pretty decent memory! So this is my story from the beginning…or at least what I remember of it hehe.

……………………………………………………………………………………………………………………………………………

It all started during my last year of high school. I was under a lot of pressure, worrying about projects, exams, portfolios, getting into university…typical school stuff. It was in the thick of this that I noticed a rash on my neck. It was eczema, so I decided to just let it heal on its own because I really didn’t have time to go the doctor.

Unfortunately, it didn’t get better. It stayed the same, while other rashes popped up on my hands.

When I finally had time to go to the doctor in March, he gave me a cream (I can’t remember what it was…probably Hydroval). I put it on, and the rash got better. BUT it didn’t go away completely. It didn’t really bother me, so I stuck with the cream until around August. At this point, my skin was getting worse. I had a red rash all over my neck and my inner elbows.

This was when I went to the dermatologist. He took one look at my skin, said it was eczema, and gave me Elidel, a non-steroidal immunosuppressant. The cream controlled the spreading rash, so I used it for five months. However, I no longer believed that it was just eczema.

I stopped using Elidel in January 2012 because my skin was stagnant. It wasn’t getting better or worse. Within a week of stopping, the rash had spread to my back and my forearms–places that I rarely had problems with before. I panicked, thinking that I had candida.

I went on the anti-candida diet for a month, eating only vegetables, chicken, and fish. Even so, the rash continued to spread, and my neck started oozing. Little did I know, I was detoxing and withdrawing from the creams, so the diet was actually making my symptoms worse! Of course I went back to the dermatologist, who gave me Clobetasol Propionate (a super potent topical steroid), and of course my skin improved overnight. He wanted me to use the cream for two weeks, and then switch over to Hydroval. I did just that, and of course, once I stopped using the super steroid, the rash started coming back slowly. I waited about a week before using the Hydroval, which controlled the rash a bit. I used the Hydroval for three months.

When school was over in May, I had time to go to the doctor again. He got me to see a different dermatologist and an allergist. The allergist gave me Diprosalic, another topical steroid with salicylic acid. I used it for three weeks, and my skin was the best it had been in a long time. It was back to it’s normal colour, and I was able to wear a t-shirt in public for the first time since August 2011 (it was June by then). But even before the three weeks were up, I felt the rash coming back.

It returned as red, itchy bumps on my neck and my arms. From there, it slowly became flaky. The bumps turned into dark patches, and the patches merged until they covered my entire torso and parts of my legs. The majority of this happened in the first month, and now, even in my fourth month, it’s still spreading, albeit more slowly. Almost 90% of my body has the rash, and I haven’t had any breaks so far. Hopefully my skin will improve soon!

Mariella