Monthly Archives: December, 2016

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.

Catholic Calendar 2017

Whoa, hey there, December! It’s high calendar season, which means it’s time for my annual Catholic calendar post.

minicalendar

Photo by Joe Lanman at Flickr.

If you’ve already subscribed to my Catholic Calendar, you are already all set! I added the 2017 dates a little while ago. A site visitor asked. (I really do read every comment and contact form message I get, and since I’m a small-time blogger, I almost always respond.)

If you’re new or not a subscriber, then these steps are for you:

Subscribe Using Google Calendar

  1. Copy this link (don’t click on it; you don’t need to download anything): https://www.google.com/calendar/ical/mmc0sisckm9lduf8722ihsn3us%40group.calendar.google.com/public/basic.ics
  2. Log in to Google Calendar.
  3. On the left-hand side of the screen, click the small arrow to the right of “Other calendars” and choose “Add by URL.” Paste in the URL you copied in Step #1.
  4. All the U.S. Catholic holidays since 2011 should be visible now as all-day events. If you open the event, you can see the liturgical color and the rank (from the Table of Liturgical Days) in the description/notes.

Subscribe Using an iCal-friendly Calendar Application

I use Google Calendar, so that’s what I’m most familiar with. Check your calendar’s support or help feature for information about how to add an online calendar. You will need the same link from #1 above.

The data for my Google Calendar is provided as-is and without warranty by Romcal.

Import the Calendar

Just kidding; I don’t actually recommend this method. If you want to take the risk, I will let you figure it out on your own.

Print the Calendar

  1. Open the single-page, fullscreen, online version in a new tab or window.
  2. Select your preferred view. Month View is the default; this looks like a basic wall calendar that comes with preprinted holidays. Some days won’t show the whole event title because the title is just too long. There are a lot of letters in “Saturday of the Thirty-Third Week of Ordinary Time”! Agenda View gives you a text-only list.
  3. Print to PDF or actual paper, as you prefer.
  4. Alternative: Print the USCCB’s official Catholic calendar PDF. It has much more detail than my Google Calendar does, which could be better or worse for you.

This year’s liturgical notes are as follows:

  • There is no Sunday between Christmas Day and Mary, Mother of God; so the Feast of the Holy Family is the Friday after Christmas.
  • There is also no Sunday between Mary, Mother of God, and Epiphany; so the Baptism of the Lord is the first available weekday after that.
  • The Solemnity of St. Joseph is on March 20 since nothing trumps a Sunday of Lent.
  • The Memorial of the Immaculate Heart of Mary will not observed this year. The Nativity of St. John the Baptist is in the way, and solemnities outrank memorials.
  • I display the Ascension on a Sunday, since most of the U.S. celebrates it on a Sunday. If your diocese doesn’t, you probably already knew that.

This is technically for next liturgical year, but it’s noteworthy: Christmas Day is on a Monday in 2017. That means you have two Mass obligations to fulfill between Saturday evening and Monday midday. (Saturday Vigils must be in the evening, and the last Christmas Day Mass is customarily just before lunchtime.) That’s not even 3 full days; it’s about 44 hours. The last time this happened was in 2006. So that will be interesting.

Update: Fr. Mike Schmitz posted this excellent video from Ascension Presents explaining a bit about the different kinds of feasts.

If you have any questions, leave a comment or send me an email. I’ll do my best to help.

Enjoy!

Sunday Style: Great Outfit, Meh Mass

The upside of winter is that I have so many outfit possibilities thanks to layering. The downside is that it’s cold. No getting around that. Here’s what I wore to church this past Sunday:

Sunday Style for November 4

Dress: Target
Cardigan: Old Navy
Leggings: Target
Shoes: Old Navy
Necklace: holy medals
Earring: gift

Yes, that’s just one earring. I was trying to put them both on while driving and forgot the left one entirely! That ear is covered by my hair, so I didn’t even notice it myself until I went to take them off before bed. I found the other earring in my car, right where I’d left it. The upside of going to church by myself is that no one else ever makes me late. The downside is that I can’t do anything on the drive over there except drive, put on lip balm, and apparently put on only one earring.

I bought this dress as part of my remixable wardrobe. It’s not quite as remixable as I’d hoped, but I’ve managed to wear several different colors with it, so that helps.

Although I was running late for Mass, I made it before the announcements began. Happy day: they didn’t take nearly as long as usual! Or maybe I just didn’t feel as exhausted because I hadn’t been in the church for very long. Either way works.

Our guest celebrant was a priest I have met before. He came once for Spirit & Truth. We always sang in Latin because it’s the language of the Church (and you’re never going to learn if you never try), but he insisted on using English so we could “get with the times.” That’s a direct quotation. We struggled greatly that night because we were so unfamiliar with the English and knew the Latin by heart, and we did not invite him back.

So I wasn’t expecting much from Mass. Of course, he personalized bits of the Mass, including jumping in on our blessing at the end (it’s “May almighty God bless you” for a reason, Father), but he didn’t change the order of anything. Thanks be to God for that.

In his homily, he told us that you can catch more flies with honey than with vinegar and expressed his dismay that the Church offers us St. John the Baptist as an icon despite his definite vinegar approach. Oooooookay.

He also pointed out the end of today’s Gospel, and other parts, where John and Jesus call out the Pharisees’ hypocrisy. But he didn’t really say why they call out the Pharisees. That was kind of a missed opportunity.

Despite the distracting cartoons of St. John the Baptist and St. Nicholas he had taped to the front of the altar, I was able to appreciate the shout-out to the latter. And I got the point of Mass: the Eucharist. We closed with “People Look East,” which I adore, and all was well.


For more Mass fashion and commentary, visit Rosie at A Blog for My Mom for My Sunday Best.

My Sunday Best, hosted at A Blog for My Mom

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?

Bits and Bytes on Thriving Parishes (Review: “Great Catholic Parishes”)

Since I stopped working in ministry, I’ve been a regular parishioner, just like everyone else. Having seen things from both ends of the pew, in a sense, I remain interested in the state of American parishes and efforts to right the wrongs and fulfill our mission as Christians. So I read a lot of books about parish improvement. My most recent read in that vein is Great Catholic Parishes: How Four Essential Practices Make Them Thrive, by William E. Simon Jr. of Parish Catalyst. It’s not my favorite in this niche, but I found some gems nonetheless.

Simon begins with an interesting overview of the history of Catholicism in the U.S. I’d never really thought about it from the perspective of the parish before. In Catholic countries, Simon writes, the parish wasn’t important because the Faith was everywhere. In the New World, however, Catholics clung to their parishes as cultural, social, and religious centers. It wasn’t everywhere anymore. Considering that difference got me to thinking about what the ideal situation would be today: to have the faith “in the water,” or to have it be something you have to choose and fight for. One could make a good argument for either.

Cristo Redentor statue

Unfortunately… Read the rest at ATX Catholic.

Sunday Style: Pin-ture Perfect

Congratulations to Rosie on the birth of her new baby! (That has nothing to do with what I wore to church, but it’s still nice.)

Sunday Style for November 27

Had to use my app again. I usually adjust the exposure on the full-length in post-process.

Dress (worn as a skirt): Kohl’s
Blouse: Target
Shoes: Payless
Earrings: old, old gift

Oh, hey there, Advent. Thank you for the twice-a-year challenge to wear every purple item I own to Mass.

This outfit is a recreation of this pin. As soon as I saw the pin, I knew I should try to recreate it with this dress, but it took a while to acquire the right shirt. I love this dress. I purchased it so long ago that the couple whose wedding I originally wore it to now has a two-year-old. This might be the last time I can find a new way to wear it, but it was worth a try. And yes, it’s rather more fuchsia than purple, but that totally counts.

“Thanks be to God for giving us another Advent,” said Fr. Pastor. That’s not something I’ve ever thought about before. I think about Lent as another chance to get right with God, but never about Advent as another chance to prepare for what is coming at the end of the world. I didn’t think he would mention the second/end-times meaning of Advent, which is my favorite, but he did. Hooray!

He also sang several lines from Handel’s “Messiah,” but he didn’t point out that it’s an Easter oratorio. Most people don’t realize that, but think about it: What time of year do we sing “hallelujah” so exuberantly? Not Christmas. In the end, anything that gets people singing (or at least enjoying singing) about the King of Kings and Lord of Lords can’t be all bad, right?

Finally, Fr. Pastor said that going to Mass on Sundays is a chance to stop and pray, so even if that’s the only thing you do to prepare for Christmas, it’s better than nothing. I have never even thought about being so busy that I would skip church. (I’m not saying I’ve never missed Mass, but not on purpose; not since I came back.) I would imagine that people who are so gift- and party-focused that they would skip church aren’t going to church in the first place; however, encouraging Sunday Mass as a bare minimum can only be a benefit.

Since my new parish sings the seasonal Marian antiphon after Communion every week, I got to try out the Alma Redemptoris Mater, which I learned for Night Prayer last December. It was very comforting. It felt like peace.


For more Mass fashion and commentary, visit Rosie at A Blog for My Mom for My Sunday Best.

My Sunday Best, hosted at A Blog for My Mom

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