Don’t Mess with Makeup

I’ve never been much into makeup, but over the years I’ve tried a lot of different concealers and foundations to cover up my acne. And then when my pyoderma faciale popped up in my 30s, my face started rejecting makeup altogether. Even the cc cream I had been using seemed to irritate my skin. By the end of the day, I was ready to claw my face off. It just wasn’t worth it to even try to wear makeup. Because of this, I’m a big supporter of au natural for us women. Why should we spend so much money on makeup when we’re beautiful without it? And for the first time in nearly two decades, I’m so happy with the way my skin looks without makeup. Let me update you on what’s been going on the last two months.

I have a new doctor, and he is the head of the department of dermatology at MUSC. My former dermatologist thought it best, considering my co-morbidities, that I stick with MUSC after I consulted with them for a second opinion.

So this is what my new doctor had to say: Because of the kind of acne I have, I need to be on the Accutane for 1-2 more months. A normal course of Accutane is around 4-6 months. Today, I have completed 6.5 months. He also wants me to go on a short course of Keflex to knock out any Staphylococcus aureus. Hopefully that’ll clear up the left side of my face, which is the stubborn side. I got some injections of kenalog, which is pretty much the norm for my dermatology appointments. I joke that it’s a new fashion statement to leave there with band-aids on my face and then go walk around Costco. He also said that my hair was thinning (grreeeaaatttt). When I get off the Accutane, he suggested I start on spirinolactone and a mini-antibiotic (a small dose of doxycycline). That’ll help keep the acne away and help with my thinning hair. I wanted to take the Accutane so that I wouldn’t have to be on long-term antibiotics, but I’m willing to compromise if it helps.

Me with band-aids on after my last derm appointment

My last breakout was about a month ago. Fingers crossed that it was the LAST breakout. I’m still dealing with a couple of side effects from the Accutane, but they’re minor. I suffer from joint pain everyday, mostly in my feet, but I’m still able to stay active, so it’s a tolerable side effect. And, as always, my skin and lips are dry. This side effect is even more noticeable now that the weather is cooler.

I’m hopeful that by the end of the year I will be able to say that I’m done with this medicine. And I’m going to leave you all with this: life is all about perspective. I know I don’t need to wear makeup, because I know just how far my skin has come, and I want to show off my beautiful skin! It’s beautiful to me for the first time in years.

Left is now with cc cream on (yes I wore a little), right is the start of my Accutane journey

It’s a Long One

A few weeks ago, I was binge watching a show on Netflix called Diagnosis. It’s a documentary series about a doctor who uses crowd-sourcing to help people with rare diseases find a diagnosis. At my last dermatology appointment for my five month check-up, I felt like one of these patients. My dermatologist took a look at me and said, “I think we might need to stop the Accutane. It looks like you have an abscess on your chin.” I had a really bad pimple pop up there a few days earlier. She drained the abscess and cultured it. And then put me on (once again) another strong antibiotic. Side note: one of the reasons I went on the Accutane was to try to avoid having to be on long-term oral antibiotics.

Me today. You can see the scarring from old pimples, but no new breakouts for a couple of weeks!

Leaving the office that day, I felt very defeated. My dermatologist decided to keep me on the Accutane for now, but she wanted me to see the head of the department of dermatology at MUSC. She basically said, I don’t know what else to do to help you.

But, that’s not the end of the story! I went home and obeyed doctor’s orders. I took my antibiotics and waited to hear from her with the culture results. It took a week and a half to get the results, thanks to Hurricane Dorian that pummeled the southeast. When she called me, she told me the culture was negative. Great news! And by that point, I hadn’t had any new breakouts on my face. I think I’ve finally turned the corner. I still have a lot of scarring on my face from the breakouts I’ve had the last few months, but I’m encouraged and hoping that things are looking up.

Me just before my last dermatology appointment. I was at rock bottom at this point. Great photos! I’m being real here, folks.

I have my appointment with the head of the department of dermatology tomorrow, so I’ll get to see what he says. If I learned anything from the Diagnosis documentary, it’s that two heads (or three or four) are better than one. If you’re ever unsure about your doctor’s advice or not sure they have the diagnosis right, seek a second opinion. Your doctors actually appreciate another doctor’s opinion.

One last thing: I don’t share a ton about my faith on this site, because I want this to be more about my medical journey, but A LOT of people have been praying for me through this journey. And I definitely think that helps too. In fact, I broke down one day at work. It’s hard to work in the medical field when you face is all broken out. I was feeling really down that day, and I told my co-worker how I was feeling. She prayed for me right there on the spot. I’m so thankful for friends that care about my struggles, even if they’re kind of silly.

Focusing on the Positives

I woke up this morning with a third pimple on my right cheek. This is the cheek that was completely clear about a month ago before my last update. Obviously, I felt a little defeated. But as I was getting ready for the day, I took a closer look in the mirror. My face tells the story- it’s clearer than when I started this journey. So my acne isn’t completely cleared up, but it’s better than at the beginning. I started to take an inventory of the positives.

Here’s my list:

I still have some acne on my cheeks, but I can’t remember the last time I had a breakout on my chin or the area above my lips. Both of these places have been a constant source of breakouts for me since my teen years just about.
As I’ve mentioned before, I struggled with folliculitis on my scalp before starting Accutane, and that has COMPLETELY cleared up. I haven’t really had issues with the folliculitis since shortly after starting the Accutane. I mentioned it to my hairstylist last time I went in for a trim, and she said she noticed it was clear. This has always been a source of stress and anxiety for me going to get my hair cut. What if my stylist thinks I’m dirty or contagious? No more worries there!
I haven’t mentioned this in my blog before, but I also have another skin condition called hidradenitis suppurativa. I’m not sure if this is a separate condition that I’ve had over the years or if I got it as a side effect of some of the medications I’m on for ulcerative colitis. Either way, I’ve suffered with it for almost ten years, and it’s embarrassing and painful. There have been many days where I’ve felt like Job from the Bible, covered in boils and sitting in ashes. But, it has also gotten much better on the Accutane. This is such a huge victory. Maybe even more so than the acne on my face clearing up.
On my last update, I mentioned the bloody nose issue. I’ve been able to breathe through my nose the last few nights, and I’ve gotten good, quality sleep for the first time since the dry nose started.

Me, just a couple of days ago, finishing up my last few doses of the Prednisone

Is everything going perfectly on my journey? Is it how I expected it to be? Absolutely not. I thought I would have one month of bad acne, and by month two I would have completely clear skin. But that’s life. It’s not all unicorns and rainbows. I have to remind myself to focus on the positives, and when I take my inventory, it turns out there’s actually quite a few things to be positive about. I haven’t even listed all of them (shout out to my amazing husband who has to listen to me rant when I’m feeling like it’s not all going according to plan). See you all in a couple weeks when I go in for my four month appointment. I’ll update then.

“Aw, You’re in a Flare”

This is my doctor’s slogan. I’m three months into the Accutane, and I’m going to be completely honest here. Things are rough, folks. My acne is not getting much better, and I’m having some not-so-great side effects.

I’ve pretty much been breaking out in pimples since I last updated about a month ago. I would say it’s not quite as bad as when I started the Accutane, but not where I would like to be after taking it for three months. But, I’m not losing hope quite yet.

Now to the new, lovely side effects. I’m still dealing with really dry lips, my feet still hurt, and my nose has started cracking and bleeding on the inside. I also think I have a cold or allergies. I thought that maybe because the inside of my nose was so dry that it might be giving me cold-like symptoms, but my doctor says that Accutane doesn’t do that. The dry nose probably started about a week ago, the same time as my cold symptoms. The last week has been pretty miserable. I’m still breaking out, and my nose is so stuffed up that I’m not sleeping very well. I’m planning to invest stock in nasal saline spray and vaseline. And I’m also using my kid’s humidifier that’s shaped like an elephant. I’m fancy.

When I saw my doctor this morning, she said the famous words I’ve come to hear so often: “Aw, you’re in a flare!” Our game plan: kenalog injections (I got 4 or 5 of those today), a short-course of prednisone, and blue light therapy. This is in addition to the Accutane. We’ll see how the next month goes. I’ll keep everyone updated!

Picture taken today, after Kenalog injections

Before I started Accutane on the left, Three months of Accutane on the right

Old, Stinky Me!

Left: Me, two weeks on Accutane and Prednisone, Right: Me before I started Accutane

I’ve been on Accutane for nearly two months, and I wanted to check in. Things are going pretty well, and I think I may finally be seeing some progress. Let me first tell you about side effects, which have been minimal. I’ve had very dry lips, which about 80-90% of people experience on Accutane. Since the doctor increased my dose last month, my feet have also been very sore, especially in the morning. Watching me get down the stairs first thing is quite entertaining. Otherwise, I haven’t really noticed any other side effects.

One of the things I’ve really started to enjoy while being on Accutane is that my hair isn’t as oily. I don’t remember if I mentioned, but in addition to acne, I’ve also had folliculitis on my scalp since right after my daughter was born in 2012. This has been challenging to treat. Since 2012, I’ve found that I must wash my hair every day without fail. If I don’t wash my hair, my scalp becomes incredibly irritated and itchy and bumpy. Gross! This is a major problem when the “in” thing is to use dry shampoo and only wash your hair twice a week. I’ve also had to use a prescription antibiotic solution on my scalp, which I’ve discontinued since starting the Accutane. The Accutane seems to have pretty much cleared up my follicultis! The doctor that I saw in North Carolina was hopeful that this would happen. So for now, I can be stinky and not wash my hair everyday! Victory!

Picture of my progress that I took yesterday

So two months in, I’m happy with the progress, and still hoping to see more results in the coming months. My dermatologist mentioned that with the severity of my acne, she thought it would take four months before I really saw results, so things are looking good. I’ll also say that so far the trepidation that many people experience before starting this drug because of the negative press is unwarranted. My labs have been great, and like I said, very few side effects. So far, I’d recommend it to anyone who has been struggling with chronic acne. It beats being on long-term antibiotics, and it’s better for your microbiome! I like to use big, fancy words.

The Next Step

I saw my dermatologist on Thursday, and after reviewing my blood work, she gave the green light to start Claravis (isotretinoin). This was after looking at my face and saying, “Oh dear, you’re in a flare right now!” Story of my life. So I’m also on another course of Prednisone in addition to the Claravis. She says that most likely my acne will get worse before it gets better, and she wants me on the Prednisone to calm things down so that I don’t scar.

Me, just days before starting the medication

Last night at dinner, before taking my first dose. I’m nervous and excited.

I know for those that don’t suffer from acne-prone skin, this may all seem a little silly, but I’ve been dealing with this for so long, and I’m looking forward to the possibility of clear skin. I really have tried everything. I’ve been on oral antibiotics, creams, lotions, gels, face washes, etc for years. My husband and I joke at night that I’m going upstairs to put my gels on. My morning and night routine is wash face, apply gels, repeat in 12 hours.

I’m assuming I will have dry skin and lips with this medication, as that is pretty much the universal side effect. I have stocked up on lotion, aquaphor, and chapstick. But I’m hoping to be able to throw some of my other stuff out as my skin clears up. I’m looking forward to keeping you all updated!

My at home pharmacy. Disclaimer: I’m not on all of this currently, but I’ve tried all of this stuff (in addition to some things not pictured) at one point throughout my journey.

2004-2007

I graduated from high school in 2005. Senior year was not what I expected, since the summer before I was diagnosed with ulcerative colitis. There were days I would leave school early, because I just wasn’t feeling well. Not only was I dealing with the symptoms of ulcerative colitis, but I was also dealing with crippling fatigue. I later learned that this is a pretty normal side effect of a chronic, autoimmune disorder. Today, I still enjoy going to bed no later than 9 pm. Don’t judge.

During my senior year, I made the decision to attend Ferris State University; it was one of three schools in Michigan that had a PharmD program. At the time, I wanted to be a pharmacist. When it was time for me to leave for college, I was feeling pretty good. I guess you could say my ulcerative colitis was in remission. My freshman year was so much fun. They say college is the best time of your life, and as a freshman, I would have to agree. I met some of the best people, and they became my family during my years at Ferris.

See, in high school, my dad worked for Ford. This is not unusual, considering that we lived in Michigan, the birthplace of the automotive industry. But, in 2005 things were not looking good. We were nearing a recession, and my dad was looking for new job opportunities. He found a job in Charleston, South Carolina. After I graduated, my parents sold our childhood home and moved south. I stayed at Ferris State to hopefully finish my degree. But this left me alone, with no family in close proximity. My friends at Ferris really did become my family.

My sophomore year of college was more challenging. I started questioning my degree choice. I wasn’t sure I wanted to stay in school for six years, and I felt like I was being called to a degree in nursing. So halfway through my sophomore year, I changed my degree to nursing. My ulcerative colitis also started flaring during my spring semester. I didn’t have a local gastroenterologist in Big Rapids. I ended up going to the tiny ER there, and they sent me to a hospital in Grand Rapids, where I was admitted for a couple days. The doctors in Grand Rapids started me on Remicade.

Despite being on a biologic that was proven to put people with ulcerative colitis in remission, I was struggling. At the end of spring semester, I made the difficult decision to leave Ferris State and move to Charleston permanently to be closer to my family.

The summer of 2007 was the worst summer of my life. I moved into my parent’s house. My health was absolutely miserable. I had no friends. I was on large doses of Prednisone to try to tame the inflammation in my gut. I would take walks in my parent’s neighborhood at 6 am, because I couldn’t sleep. I would spend this time talking to God, and asking Him for healing and for friends. The prednisone also made me incredibly hungry. I remember I would eat several bowls of Publix oatmeal chocolate chip ice cream. It was my weakness. And they don’t make it anymore! That’s probably for my good.

Even with the high dose of Prednisone, I was still sick. In July, I had met with a surgeon. My gastroenterologist recommended this. He suggested I have a total colectomy (remove my colon), and live with an ostomy for a short period of time. Then I would have to have at least one or two more surgeries to reconnect my bowel and make a kind of pretend colon out of my small intestine. It was going to be intense, but I felt like it was my only choice.

I did look for a second opinion, per my mom’s advice. So we also met with the gastroenterologist team at the Medical University of South Carolina (MUSC). I think they spent at least an hour talking to me at that first appointment. I feel like they truly listened to me and tried to gain a thorough understanding of what I’ve been through. That’s something I love about teaching hospitals. First you see a med student, then a resident, and then the attending during the first appointment, so you feel well-loved. After that appointment, I felt hopeful. They put me on some new medications and asked me if I’d be open to trying Remicade again.

In December of 2007, I went back on Remicade. I think I had only had one or two infusions up in Michigan before I moved to Charleston. Sometimes Remicade can take awhile to work, so I was willing to give it another try. In the fall of 2007, I also found out that I had made it into the nursing program at MUSC. I would start in January 2008, and because the program is accelerated, I would still finish within four years of starting college. All of this made me excited for the future. Things were looking up, and I wasn’t as depressed and lonely as when I first arrived in Charleston in the summer. I finally felt like I had hope and a future.

I Almost Died!

So I almost choked on some pills yesterday morning. I use a large Tervis to take my pills, and I’m not sure why I do this. I should use a smaller glass, because I’m clumsy and don’t know how to drink out of a big girl cup.

Unfortunately, this is not my first time almost choking to death on pills. When my husband and I were dating, we went to a nice restaurant after work one night. I was having stomach problems at the time (not unusual with my medical problems), and I was having to take these large horse pills four times a day. I had to take them before meals. So we were at this restaurant, and I had to take this pill before I ate. I tried to swallow it and started gagging. The gagging was enough to draw attention from onlookers and enough to scare my future husband over to my side of the booth. He wrapped his arms around my trunk and started performing the Heimlich maneuver. Thankfully, I wasn’t really choking, just gagging, because the pill was lodged in my esophagus. Eventually I was able to swallow it enough that I didn’t feel it every time I swallowed. I switched to the liquid version of the medicine after that.

Fast forward to yesterday. I was taking my probiotics with my Tervis. They’re not even that big, and they’re capsules, but I have to take TWO of them. Uh oh. Same thing happens. They’re stuck in my throat, and every time I swallow I start gagging. And I can’t get them down. My daughters are in the living room on their tablets, totally oblivious to the fact that their mom might be dying. Between episodes of gagging (remember, I’m not choking, so I can talk, speak, breathe), I yell to my daughter to get my phone. I think that there’s a chance I could start choking, so I was prepping for my six year old to have to call 911 for me. I drink more water, keep swallowing, and eventually the pills go down. But at this point, I gagged so much that my throat and stomach muscles hurt. And I learned my lesson that I need to teach my daughters more about what to do in an emergency. Especially since they have a sickie mom who can’t swallow pills.

Said four year old didn’t want left out of the picture taking

The Before and After

Gosh, where to start? I want to tell you all about the first time I got sick. There’s the time before that and the time after that. I’m living in the after.

It was summer of 2004, and I was getting ready to start my senior year of high school. I still remember the day I got sick very clearly. I had a friend over, and I had diarrhea. I just thought I had some kind of stomach virus, no big deal. I didn’t even feel that poorly. But it didn’t stop after a day or two, and things started getting worse. While at my summer job, I noticed that I could barely make it to the bathroom I had to go so bad, and there was blood in my stool now. Never a good sign. My sister worked with me, so I grabbed her and started crying. I knew something was terribly wrong. She reminded me that our mom had some kind of illness similar to the symptoms I was describing, and that I needed to talk to her.

My mom scheduled an appointment to see our pediatrician, who referred me to a gastroenterologist. Within a couple of weeks, I had my first colonoscopy. The diagnosis was ulcerative colitis (UC). Ulcerative colitis is an autoimmune disease under the inflammatory bowel disease umbrella. Unlike Crohn’s disease, it only affects the colon. I was experiencing the classic symptoms- urgency, frequency, cramping, blood in the stool. These diseases affect young people. Most people are pretty young when first diagnosed. I was seventeen. Unfortunately, there is no cure, but there are ways to manage it.

I want to make a note here of how thankful I am for my mom. She, too, has ulcerative colitis. And when I told her about my symptoms, she immediately called my doctor. I only went a few weeks between onset of symptoms and diagnosis. Some people go much longer before they’re diagnosed, because they’re embarrassed to tell anyone about what they’re going through or they can’t find a doctor to help them. That was not the case for me.

My life changed that day in July 2004. There is the before, and there is the after. Nearly fifteen years have passed, and I can’t speak to all that I’ve endured in those fifteen years in one blog post (I’m getting there). But I will tell you that currently I’m in remission and have been for about twelve years. What an amazing blessing!

The First Day

I’ve often told my husband that I wish it was common for women in America to wear burkas. No, I’m not ultra conservative, I just have adult acne. And I know my acne is not the worst case recorded in history, but for my fellow acne sufferers, you know how much it can affect your self-confidence. Hence, the burka comments. If I wore a burka, no one would notice the acne, and I’d be able to show off the one feature that I like- my beautiful, blue eyes.

It’s not just a cosmetic issue, but the acne is also pretty painful. In the past year, I’ve been diagnosed with a new kind of acne hell called pyoderma faciale (I guess it’s a fancy term for rosacea). It’s like I hit 30, and my body is like, “Oh you thought you had it bad, well let me show you what else I can do to you.”

Most recent flare up of rosacea on my cheek. This was after another round of prednisone and antibiotics.

So today I went to my dermatologist. This was after talking with my gastroenterologist and a dermatologist in Chapel Hill that specializes in another skin issue I’m dealing with (more about that later), and they approved me to go on isotretonoin (formerly known as Accutane). Isotretinoin has a bad rap. You absolutely cannot get pregnant on it, because it can cause severe birth defects. There are some other serious side effects. It can be really harsh on your body. But it’s my last resort. It’s either this or long-term antibiotics to keep my skin issues (not just acne) under control.

I really wanted to document my experience with isotretinoin for anyone thinking about going on it themselves. It’s one of the reasons that I’m willing to try it. I’ve seen a lot of success stories on the internet. So here’s to the first day. I’m calling this day one of my journey. I won’t be starting for another month, because I have to get another negative pregnancy test before starting the medication, but I’ll be updating as I go. I’ll also be telling more of my story along the way.