Health

The Incurable Disease That Almost Stole My Career

The fashion blogger behind Penny Pincher Fashion tells about her secret struggle with lupus

One morning, I woke up and realized my eyes were swollen shut. The rash that had been creeping up my chest over the holidays was now covering my entire neck. I'd been keeping it under wraps by avoiding plunging necklines, styling my wardrobe around turtlenecks. But the outfit that I had planned for my blog shoot today was not going to hide the rash, and red was not a part of my planned color scheme.

Maybe this is the point where other bloggers would have given up and said, "Sorry, no photo shoot today." Or just fessed up to their readers ("BTW, I have this crazy, mysterious illness that I've been battling for years -- no big deal. Please ignore the creepy rash and bug-like eyes") but that's just not me. I'm a recovering control freak. I don't like being the center of attention. And, more than anything, I hate people feeling sorry for me.

So I rummaged through my closet -- and my brain -- for a solution.

I put on sunglasses and a thick scarf, painted on a bright smile and pretended my way through the photo shoot so I'd have a blog post for the next day. Those pictures probably look just like any others to my readers, but what they couldn't see was the intense stress, recurring mono-like symptoms and overwhelming exhaustion I'd been dealing with for years.

My Diagnosis
I knew something was wrong when I didn't seem to be recovering from on-again, off-again symptoms (like fevers, body aches, sore throats that wouldn't go away) that I'd been battling for eight years. So my husband took me to the doctor for blood tests followed by a million questions. After everything I had battled over the past few years, I had never actually gone to a doctor when my symptoms were active. I was driven to get answers once and for all. And my husband, God bless him, pushed for answers when I couldn't. Three hand-wringing days after a blood test and antinuclear antibodies test, I got the call confirming that I had Systematic Lupus Erythematosus.

My heart crumbled. Lupus is a chronic autoimmune disorder, which basically means I have a hyperactive immune system. So instead of just fighting off bad bacteria and viruses, my immune system attacks healthy tissues like my skin joints, and in the future, possibly my organs. I have what are referred to as "flares" that can last anywhere from a couple of weeks to several months. I had no clue what this would mean for me. I'm a mom, and I have the blog and a part-time job that I need to contribute to our family's income. Plus, my kids are still young (I have a 10-year-old girl and a six-year-old boy), so I knew I was susceptible to whatever they end up catching at school. When I'm having a flare, I'm stuck in bed with chills and a raging fever and mouth sores that make eating nearly impossible.

Some mornings I didn't even want to get up and get going. I can see now that I was grieving. I realized I'm going to have to deal with this every day for the rest of my life. There is no cure for lupus and it can resurface at any time. I felt like I lost my chance at a normal, healthy life.

Recovering & Revealing
While all of this was going on at home, I hid my symptoms from my readers. My hair was thinning and I was so self-conscious about it. I kept trying to disguise it with hats and new hairstyles. I even considered extensions to give me more volume in photographs. It's really hard to see changes in myself through photos. I've been a blogger for over three years, but the rude and inconsiderate comments from others still hurt. I've had users comment on my social media accounts that I'm just in this for the money or the free clothes. Comments like that always hurt. I was really worried about having to deal with more negative thoughts if I opened up about my disease.

I reached a turning point when I saw myself through my family's eyes. My husband has been so supportive, loving and compassionate, but I realized that he can't shoulder all this alone -- he needs me to be strong, too. I also knew my kids were looking to me to see how I would with deal my illness. I wanted to show them that you can't have a pity party when life doesn't go your way. You stand strong, recognize all the good things you have and fight like crazy.

I fought by taking better care of my body. After a lot of research, I decided to go on the Paleo Diet. It cuts out sugar, dairy and gluten, three things that can be hard for anyone to digest, especially people with autoimmune disorders. This change has helped me immensely and I've seen so much improvement. I used to run eight miles a day, but I've switched to yoga, which helps a lot with my joint inflammation and pain. In some aspects, I can control if it's going to be a good or bad day.

Left to right: My thick hair before the disease; My hair after months of thinning and my new style to cover it up
I also got real on my blog. I wanted to keep Penny Pincher Fashion a positive and upbeat place focused on fashion and beauty, and I was placing pressure on myself to put out a perfect product. In addition to fearing mean comments, I didn't want readers to think I was just trying to get attention or sympathy. I kept my diagnosis within the walls of my family as long as I could. But managing stress is a huge part of dealing with lupus, and I couldn't keep up with blogger events and my part-time job while keeping this secret. I had to start letting things go. So I quit my social media job, revealed my diagnosis on my blog, and -- finally -- gave up trying to be perfect for my readers.

Opening Up
Now, I'm trying to incorporate more of my "real" life in my blog and show more behind-the-scenes moments. I realized that people appreciate it and relate to it. We've all had those moments where we're reading blogs and we think, "Gosh, they're going to Mexico again!" or "Didn't they just redo their house?" But there is so much more behind the glossy, perfectly polished images. I've talked about my struggles with lupus, body image and my son's Tourette's syndrome, but I'm still cautious. It's scary to give out those personal details and to expose myself to people I don't know.

The one great thing about this is, a lot of readers and other bloggers have told me that they struggle with autoimmune diseases, too. It helps people to see me as a real person and not just someone who poses for pictures and talks about fashion every day. I think they see, "Oh, wow, she's struggling with something just like I'm struggling with something," and it gives them perspective. And it gives me perspective about the things I'm dealing with. I don't worry so much about whether my Facebook page is updated or what summer beach bag I'm going to purchase.

There are still days when I want to give up, but my faith has played a huge role in dealing with life's disappointments. I've learned that I need to ease up and let go of control more. I never know how I'm going to feel when I wake up in the morning. Some days are great and I'm energized, and other days I just want to hang out in my bed and binge on Netflix. But I started this blog to connect with other women and help them out, and they've shown they understand what's it like to deal with aspects of your life that not everyone sees. I'm choosing everyday to be positive about my illness and set a good example for my kids, because I know they're looking to me to see how I deal with something like this. And I'm choosing to be more open with my readers, because when you open up about what's really going on, we all feel a little less alone.

Read more about Kimberly's journey on her blog Penny Pincher Fashion .

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