Category Archives: Life

I Have Morphea

I have a secret.

I have morphea.

Morphea is a rare and incurable autoimmune skin disorder, and it’s something I have been living with for the last two years. It’s pronounced MOR-fee-uh, like “metamorphosis” or the Mighty Morphin’ Power Rangers.

Morphea is rare in the sense that less than 200,000 people in the U.S. have it. I’d never even heard of it until my dermatologist mentioned it. It appears to be slightly more common among black people and women, so I won that terrible lottery.

It’s incurable in that, well, there’s no cure. There are treatments that can help with various effects, but it’s not like a cold or rash or even something that can be managed with medication. No one knows how it begins. Once it begins, it can spread quickly or slowly. It can worsen over a lifetime or stop spreading altogether. It can suddenly get worse after years of stagnation. It might be exacerbated by skin injury, some attempts at treatment (nice, huh?), or even pregnancy. It is possible to have all of one’s morphea patches disappear completely without any treatment at all.

It’s autoimmune, which means that I didn’t catch it, and you can’t catch it from me. Autoimmune disorders of all kinds are particularly hard to treat because they vary as much as individual humans do.

Autoimmune disease: because the only thing tough enough to kick my *** is me.

My Story

About two years ago now, I noticed some weird bruises on the front of my calves. I didn’t think much of it. I am tall, and I got tall fast when I hit puberty. I’m still a little bit clumsy, so it’s not entirely uncommon for me to, say, bump into a door frame and forget about it until a bruise turns up later. These spots didn’t hurt, which was weird; bruises tend to hurt at least a little. I mostly ignored whatever was happening, choosing to wear maxi skirts, pants, and leggings to cover up.

I don’t remember exactly when the not-really-bruises first appeared, but I do remember that the cold weather came fairly quickly after I noticed, because I was relieved. It’s not so obvious and not so much work to cover up my legs when it’s cold. That detail places the onset of my morphea at roughly summer 2014.

When spring 2015 came, I resumed my careful wardrobe selections. That lasted for the rest of the year. I’m good at hiding, remember? As I scroll through my What I Wore Sunday photos, I’m still surprised that you can’t really see anything.

Yet the weird discolorations remained. They still didn’t hurt, but they’d spread to the area just above my knees. I knew enough about skin to realize that the spreading was not a good sign. But I didn’t have a good enough reason to want to go through the trouble of figuring out what was wrong.

Early in 2016 is when things started to change. I found myself scheduling the first in-person visit with my long-distance boyfriend, and I realized that I couldn’t just keep hiding. He deserved to know.

When we were finally together, I decided to stop hiding. Obviously, he was concerned. I was, too. A little bit more. Finally. I made an appointment with a family practice doctor, who sent me on to my dermatologist. I was still dragging my feet, so I didn’t make it there until Memorial Day. Better late than never?

My Diagnosis

The dermatologist first suspected granuloma annulare (GA). She took two punch biopsies to send to a pathologist, hoping that if one wasn’t clear, the other would be. I left with two band-aids and one stitch.

Unfortunately, she had to take the punch biopsies from the back of my calf, so the scars are very noticeable. She did help by pointing out that the backs of my calves have much darker and more widespread patches. I hadn’t noticed. Think about it: how often do you look at the back of your calves?

In retrospect, GA might have been worse than morphea, because “granuloma annulare” is kind of a fancy medical term for “we don’t know how this happened to your skin, and we don’t know how to fix it, but it might go away.” It’s like Bell’s palsy, but for skin conditions instead of muscles.

In reality, the results came back inconclusive for GA but possibly indicative of “early morphea.” The pathologist had not examined my skin, so he couldn’t have known that, clearly, I did not have “early” anything.

So I went back to my dermatologist for another, more extensive biopsy. This was when I finally got scared. There are 3 levels of skin biopsy: shave, punch, and excisional. The punches hadn’t been clear enough for a firm diagnosis, so we needed to dig a little deeper. Literally.

I tolerate physical pain and discomfort pretty well; most women do. So I was okay as the nurse numbed two new spots on my leg (the same leg as before). I was even okay with the actual pressure and pulling I felt during the procedure. She only needed one spot. But this time, my doctor was wearing scrubs. She’d laid out sterile blankets to isolate the surgical field. It was really cold in the exam room. It felt real, and I was scared, and I was alone.

This biopsy required more stitches, and it hurt a lot more after the anesthesia wore off. I hobbled my way through work, back to hiding my legs under long skirts. I felt defeated, and I hoped desperately that this one, this time would work.

A few weeks later, the pathologist’s diagnosis came back. It was morphea; no question. I had scars, and I still had all my patches, but at least my weird skin discoloration had a name.

Treatment, and a Brief Detour

My dermatologist prescribed a topical corticosteroid and a vitamin D cream, in addition to a follow-up appointment to check their progress. I used both faithfully, although I did accidentally leave them in the trunk of my car during a hot, hot afternoon in Houston.

A few weeks after I started treatment, I noticed some red bumps all over the front of my left leg. (Same leg.) I also wondered if my mostly-healed excision was supposed to be quite that pink, and if that bump on the edge was okay. You might think that I would be more cautious about weird things on my legs post-diagnosis. You would be wrong. After one very painful leg-shaving and a couple of days of calf selfies to verify that I wasn’t seeing things when I thought the bumps were multiplying, I went to my previously-scheduled appointment.

“How’s everything going?” asked my nurse as we walked back to the exam room.

“Well, the morphea patches are basically the same, but I’ve got some new problems I was hoping you could check out for me,” I replied.

This diagnosis was much easier, although I was getting a little tired of getting things cut off my legs every time I saw my dermatologist. I had a bacterial infection called folliculitis (on both legs at that point) and a staph infection in my incision scar. So I stopped using the morphea creams and switched to antibiotics and antibacterial lotion.

I have never had so many prescriptions in such a short time.

Just over a week later, I was back to patchy business as usual. I am not currently pursuing any treatment plan. This condition is so mysterious that the basic course of treatment is not specific enough. My morphea is not nearly as bad as some of the photos I’ve seen and descriptions I’ve read, so I’m satisfied with watching and waiting. And I should probably not get a tattoo.

Life with Morphea

Once I had my diagnosis, my confidence started to return. Except for a brief detour through folliculitis and staph, I haven’t let me morphea hold me back. I spent almost two months keeping my excision scar covered with a Band-Aid whenever it would otherwise be visible, because I was not about to let it get infected again. That goal is how I discovered that you can buy a whole box of standard-sized Band-Aids.

Now, I wear whatever I want. I think people notice my morphea patches, but most of them are too polite to say anything. Or they are strangers. In over two years since onset, only one person has actually asked, and I can tell she asked because she was concerned about me. “I don’t know what’s up with my legs” was a really unsatisfying answer. This isn’t great, but it’s much better.

I also belong to a closed Facebook Group for people who have morphea, and we suspect that it might be more common than the medical definitions suggest. Mild cases are easy to mistake for birthmarks or stray skin discolorations. But no one’s really researching it, so it’s tough to tell beyond anecdotes.

This is just my life. Morphea is a part of who I am now. It’s just one of the many things that make up my crazy, beautiful life.

Additional Resources

If you Google “morphea,” you’ll notice a distinct lack of results. It doesn’t even get the special medical information box. The first reference I turned to is from the Mayo Clinic, and that’s where I would point you first. The Mayo Clinic has a great, brief, detailed overview of what morphea is and how it’s diagnosed and treated.

The Wikipedia article on morphea is pretty informative, as its articles tend to be. Notice how it is also brief. That’s the rare part shining through.

The National Institutes of Health classifies morphea as a rare disease and also as a kind of scleroderma. (Morphea is sometimes called “morphea scleroderma.”) Most forms of scleroderma are much worse than mine and can damage internal organs, though, so I’ve been reluctant to take that label.

Some scleroderma-focused resources also have information about morphea, particularly the International Scleroderma Network and this archived Scleroderma Care Foundation page.

The Journal of the American Medical Association for Dermatology (JAMA Dermatology) offers some useful and not gross illustrations of several kinds of morphea.

Michelle Liane Gerovac is a professional photographer in Canada. She also has morphea. Hers is the kind called “en coup de sabre,” which is a French term describing skin discoloration or malformation that looks like one has been hit in the head with a sword, but it’s essentially the same thing I have.

Vitiligo is kind of the opposite of morphea. Morphea tends to darken skin pigmentation in its mildest form (like mine); vitiligo removes skin pigmentation, lightening it. Michael Jackson is said to have had vitiligo. The Catholic women’s online magazine Aleteia For Her shares a story and photos of a model who has vitiligo. I can relate to her attempts to mask the reality of an incurable skin condition.

Currently: December 2016

Currently at Lindsay Loves

November is always a frustrating month. People want to try to stop doing anything useful a full week before Thanksgiving Day because “it’s almost Thanksgiving,” and then it takes several days to get back into the swing of things because “it was just Thanksgiving.” Then it’s December. So for these last six or seven weeks of the calendar year, I am happy if I manage to get anything done, really.

Here’s what I am currently…

Doing: Trying to maximize the rest of the calendar year. I’m not planning anything new for January because I don’t make New Year’s resolutions. The only thing I’ve added to my usual December schedule is sending my Christmas cards before Christmas instead of roughly at Epiphany. My goal is to figure out what can be realistically done this month and what needs to be deferred to next month. I’m trying to treat December-to-January like any other month-end transition, except that many other people will be out of the office at the same time I am.

Enjoying: My non-traditional Advent wreath. As I shared on Instagram, I finally figured out how to get two full lightings out of each tea candle. It’s an art, guys. This year, the Fourth Week of Advent is much longer than usual, so I will get to see the whole wreath lit for several days. I’m excited.

Cooking: Nothing special. Since Spirit & Truth disbanded, I have one additional night at home each week, but I haven’t established a new meal plan for that night yet. I eat, so clearly I’m figuring it out, but I like my simple solo meal planning so much that I want to include this “new” night, too.

Wrapping: A White Elephant gift. I don’t like White Elephant exchanges (or Dirty Santa, Yankee Swap, or whatever you call it), but I have a greater dislike for being called a poor sport for not participating. How is it fun to spend money I don’t want to spend on something I don’t want that no one else wants, either? So I went with my typical gift when I get sucked into these things: a cube of Post-Its. It’s easy to wrap, no one ever guesses what it is, it’s appropriate for all ages, and it perfectly straddles that line between useful and useless.

Playing: Codenames. I spent Thanksgiving with an old college friend who is now local, his wife, and an assortment of international Ph.D. students. This game was perfect since it relies on pretty broad knowledge of English (for practice) but works for fairly large teams (we had about six people each). It was even better than Werewolf/Mafia. I loved both being a spymaster and being on one of the teams. Randomly, another friend who is temporarily in the U.S. after living in Europe mentioned this exact same game at another event with completely different people. The synchronicity was awesome and slightly creepy.

Recapping: November

  • I voted.
  • I went home for my grandmother’s funeral. I’m glad we could finally, finally, lay her to rest.
  • As mentioned, I had a low-key Thanksgiving. It was excellent.
  • My favorite band, Switchfoot, live-streamed their Day After Thanksgiving concert from L.A. They put on such a good show, and I remembered why I love their music best.
  • I made plans to see Mr. Man again: I’m taking him home for Christmas. (Technically, he’s meeting me there.)

So what’s new with you? What are you playing currently?

Currently is hosted on the first Wednesday of each month by Anne of In Residence. This month’s guest co-host is Kellie of The B Hive. Won’t you join us?

Can We Be Catholic and American? (A Response to Archbishop Chaput’s Bishop’s Symposium Talk)

__Author’s note:_ Over at the full post, faithful reader DanC pointed out that I had my Chaput speeches mixed up! I have edited the text here and there to correct my error.

I spent a while learning how to teach adolescents in addition to my time being one, so I have thought a lot about identity formation. Facing a future with President Donald Trump is forcing many Americans to reconsider what the country really thinks, believes, and wants. If the election results demonstrate anything about our national culture, it is that we are divided, and the division is sharper than many of us realized. It even extends into our religious identities. I have seen more than one report that Catholics voted almost 50/50 for Donald Trump and Hillary Clinton. The Catholic vote is not as easy to pin down as it once was.

So who are we as a church and as a country? Archbishop Charles J. Chaput of the Archdiocese of Philadelphia offered some thoughts several weeks before the election at the USCCB’s Bishop’s Symposium. He was speaking to Catholics who are involved in the political sphere, but I think his message is helpful for all of us who seek to be both Catholic and American. I offer some of his remarks here with some commentary of my own.

America’s cultural and political elites talk a lot about equality, opportunity and justice. But they behave like a privileged class with an authority based on their connections and skills.

One of the things I’ve learned from living in so many cities, states, and countries is the true meaning of culture and the power of experience. The best definition of culture I know is “how we do things around here.” In Austin, we don’t honk our car horns out of anger in stop-and-go traffic (and boy, do we have that traffic). In other cities, people honk. It’s not a matter of rudeness or nonchalance; it’s just how we do it. Before the election, many in the media wondered who would ever vote for Donald Trump. Now we know: quite a lot of people would, and did, and most of them are residents of areas far from major media’s usual concern. A Trump presidency was a possibility from the moment he received the nomination. The many who expressed disbelief may have forgotten about all the rest, and it was those voters who secured Trump’s win.


Consider the elitist attitudes we find…. Read the rest at ATX Catholic.

Pocket-Sized Pointers for Picking a Partner (Review: “101 Tips for Marrying the Right Person”)

Today’s review is of a short book, so this will be a short review. Following on the heels of their successful book 101 Tips for a Happier Marriage, Jennifer Roback Morse and Betsy Kerekes have released a guide for getting to marriage in the first place. This new title basically begged me to read it: 101 Tips for Marrying the Right Person: Helping Singles Find Each Other, Contemplate Marriage, and Say I Do. Yes, please! In this tiny tome, I found much to support my previous thoughts about important premarital decisions and a few new points to ponder.

As the authors note, it’s much easier to have a happy marriage when you’ve married the right person in the first place. Thus, most of the book is given over to how to improve yourself as a single, how to date wisely, and what to look for when the possibility of marriage pops over the horizon. They’re definitely on the right track there. I have never been married, but I used to do marriage prep (for other couples, not for myself), and I have a personal interest in improving the way marriages begin. Starting off on the right foot sounds like a good way to set yourself up for marital bliss.

Photo by Billy Quach

Photo by Billy Quach

Some standout tips are… Read the rest at ATX Catholic.

Currently: September 2016

Currently at Lindsay Loves

Oh, hi, September. I was really eager for you to get here because my August was so awful. You’re not great so far, but you’ve got a little while left to turn things around.

Here’s what I am currently…

Reading: Whatever my Goodreads account says I am. My main book right now is Walking with God, which I’m reading with Mr. Man for our tiny two-person book club. Strictly speaking, he’s finished reading. I’m still plodding along slowly, refreshing my memory from the 8-week Bible study version of the same content from several years ago and getting ready for the 24-week version at my parish this month. Salvation history is amazing. I love geeking out with Mr. Man over our insights.

Trying: To keep going. As I said, I struggled through August, and I’m still struggling. I tried some new West Coast Swing moves. Wrist slips are very tricky.

Hoping: Not for a whole lot at the moment. I’m taking things one day at a time, so I guess I’m hoping I get more days in which to try again. Tomorrow is not promised to you.

Decorating: File folders. For my main Labor Day project, I set up a monthly tickler file. (This page has instructions and a ton of photo examples.) It’s part of GTD, but it only works with paper and other physical items, so I got by without one for a while. I bought all my supplies last May (not this past one… the one before that), but I never prioritized actually building the thing. I finally moved it off my Someday/Maybe list and got it done. There isn’t much in it at the moment, but it looks so pretty! I detest color-coding; I love colorful things.

GTD Tickler at Lindsay Loves

Just the middle part. The part in front is files that need purging and relabeling.

To-do Listing: That is not a word. Due to my love of Wunderlist and GTD, my to-do list is technically several lists. I did cross off two noteworthy items last month. I paid off another of my student loans, leaving me with only two left. I needed a win, and my debt snowball was finally large enough. Say what you want about the math; I’m getting out of debt. I also completed one of the monthly syllabi for my West Coast classes that I missed during my first go-round at this level. Learning new material on top of everything else was a challenge, but it was a challenge I could do. And I did.

Recapping: August

  • My grandmother disappeared for just over three weeks. She was found dead just over a week ago. We won’t be able to schedule her funeral for a while.
  • I got a staph infection and folliculitis at the same time. I’m better now.
  • Mr. Man’s family also went through some tough times.
  • I was slammed at work, which made all of the above a lot more difficult.
  • It was my birthday. I celebrated quietly and unremarkably.

August was a tough month. I am glad that it’s over. What’s new with you? What projects are you finishing currently?

Currently is hosted on the first Wednesday of each month by Anne of In Residence. This month’s guest co-host is Beth of The Beth Next Door. Won’t you join us?

7 Quick Takes Ending My Radio Silence

7 Quick Takes, hosted at This Ain't the Lyceum

— 1 —

It’s been quiet around the blog lately.

I have had an exceptionally difficult August. My first instinct in times of stress is to turn my usual action-oriented personality way up. I just Get Stuff Done. My second instinct is to flip out and keep my head down, to stay docile and quiet. That first instinct got me pretty far. I even managed my post for ATX Catholic. After that, I just tried to make it through my days as quietly as possible.

Things have eased up a little bit now, so I’m ready to try to regain my regular life.

— 2 —

My grandmother disappeared three weeks ago today. She lives near my parents back home in Maryland. My mom talks to her mom every day, so they are in near-constant contact. My grandma left her senior apartment complex to run a midmorning errand on August 4, and that’s the last time anyone saw her.

About a week later, Mr. Man alerted me to a local news story about my grandmother’s disappearance. I was reluctant to share our crisis at first. I wanted to ask for prayer, but I didn’t want to open up my grief. I still don’t. But I did, and I am, if only to increase our prayer support.

— 3 —

On August 8, I was suddenly slammed at work. I have been in the same role for two years, but I have never had the volume of work I experienced over the last three weeks. All of my energy went toward maintaining my day-to-day outside of work and managing my at-work workload.

— 4 —

Around August 9, I discovered that I had two simultaneous bacterial infections. (I thought it was just one at first, but I also thought it might be bedbugs. It was two. Neither was bedbugs.) They are clearing with the use of antibiotics, but it added insult to injury (or perhaps injury to injury), particularly because they are in the same area as my recently-diagnosed but as-yet-undisclosed-on-the-blog health condition. At least I already had an appointment with my doctor on August 16, and the diagnosis and treatment weren’t difficult. That helped ease the stress a little.

— 5 —

My stress increased, however, when Mr. Man’s family experienced their own tough times. It is not mine to share, but trust me, it’s a big deal.

— 6 —

In comparison to the rest of the month, this past week was excellent. In comparison to my regular life, it was pretty meh. My workload has returned to normal levels. I’m slowly getting back some of the mental space I lost when everything started happening all at once. I took two dance classes last night instead of my usual one, which made me feel invigorated and also tired.

— 7 —

I want to end on a cheerful note. I did some reading aloud at Spirit & Truth this week. One of our members complimented my lectoring skills. I pointed out that I have no athletic talent, so I consider lectoring my make-up skill. “Ah, so you have ath-lectoring talent,” she replied.

For more Quick Takes, visit This Ain’t the Lyceum.

Finding God, Funny Times, and Failing Health (Review: “Operating on Faith”)

I tend not to like vignette-style books. I never did like The House on Mango Street, critical acclaim and racially diverse protagonist notwithstanding. I do, however, enjoy stories of young adults living the Catholic life with joy, not bitterness. It’s refreshing, and it’s my reality. With a lighthearted approach in mind, I read Operating on Faith: A Painfully True Love Story, by Matt Weber, and found much mirth infused by reverence.

A review of "Operating on Faith" at ATX

As I said, this book is a memoir told by way of vignettes through Weber’s first few years of marriage. I knew that the “for better or for worse” of Matt and Nell’s early marriage would come into play, but I still wanted a cohesive character journey to follow. Even with scattered scenes, I like to have the feeling that there is a running theme to a story, a particular meaning. In the author’s own words, the major takeaway is that we should “find the meaning.” I struggled with that. Weber definitely encourages his readers to find meaning in their suffering (physical and spiritual), but he has one critical factor that not everyone does….

Read the rest at ATX Catholic.

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