Those Ads

Reading the other day, I came across this article on Slate about ad algorithms, grief, and social media (TW for stillbirth).  Basically, it explores the phenomenon where, post loss, people are still bombarded with ads for baby or pregnancy items when they go online.  It also has the FB shortcut to hide some of these ads but less advice about the vexing problem of FB’s tendency to “celebrate” anniversaries of particular posts.

When it happened to me, I was pretty sure I wasn’t the only one who had it occurring.  I can vividly remember getting baby ads after my first miscarriage because I’d spent time looking up pregnancy-related websites.  It sucked, especially in those first few days after arriving home from the hospital post D&C when I was physically and emotionally achy.

My second loss was a little less problematic in terms of the ads – mostly because I had known something was wrong from the start and my searching had been confined to things like “ectopic pregnancy symptoms” and “really low beta HcG” and “pregnant but bleeding”.

The one that really wrecked me, however, was after E’s birth at 28w4d when I kept getting ads for maternity clothes while she was in the NICU.

The Slate article goes on to talk about why there aren’t better algorithms to prevent these triggering ads: “The real problem is that there’s no quick capitalistic incentive for Face.book to do the work of sorting ads or pictures for you.  As one grieving woman told the Australian website…’There’s no money in miscarriages, obviously.’”

Having walked through infertility and miscarriage, I can’t help but think, as do the women featured in the article, that there really does have to be a better way.

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December Updates

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  • I’m working on reestablishing my exercise routine. I hadn’t fully realized how much the lack of movement was affecting my physical strength as well as my mental health.  It’s meant getting much more creative than previously, but I’m really trying to get in 3-4 30 minute sessions of moving (whether that’s walking/jogging outdoors, indoor running, using the mini trampoline, circuit training at home, or actually going to the gym) per week.  Hopefully as my strength improves, I can increase those to 45 minutes or do a 30 minute + a later 15-20 minute session.
  • Speaking of movement and mental health, I’ve long had a personal rule that for the first half of my run, I would think about all the things that were frustrating, angering, or otherwise hacking me off but then for the second half, work on considering more meditative or thankful thoughts (yes, this led to some pretty long runs during infertility since I wasn’t ready to be calm until 2.5-3 miles in!). I’m doing that again and have noticed that I’m less stressed at other times – I know I’m going to have some specific time devoted to worrying/anger/frustration and that helps me to be more functional at other times.
  • We’re decorated for Christmas! I bought a “tree collar” this year – mine’s a wicker thing that covers the base of the tree and a little way up to the bottom branches – that hides the weights I use to prevent the tree from getting accidentally tipped over better than the tree skirt.  It’s amazing, honestly, after years of carving out space that didn’t really exist in our apartments for the tree to have places to put decorations now.
  • Tree Collar
  • Above is tree collar, I can’t seem to get a picture of mine without all kinds of stuff around it :), below are some of my actual decorations
  • I made myself a dress!!!! Not the one I initially started on, but a different one.  The sleeves are slightly wrinkled (ugh) but really, for my first time I set in sleeves and did all of it, I’m pretty proud of how things came out!
  • The original dress is on its way back, however. My aunt saved my rear end after I cut it too small and was able to put in gussets to make up the difference.  I get to hem it. I’m so fortunate to have so many wonderful aunts.
  • I also made myself an infinity scarf with the left-over fabric from a skirt. I gather that animal prints are in this season and I am…not normally an animal print wearer.  However, it’s a nice, lightweight seersucker with zebra stripes and perfect for an easy scarf to add a touch of flair to an outfit.
  • The kids are doing well and growing fast. E is 3 going on 13 😉.  The other day, we finished off a paper towel roll, she held out the cardboard tube and goes “we need to recycle this.”  I told her: “Yeah, but look!  There are so many cool things we can do with this!  We could make a trumpet!” (made trumpeting noises with it).  E stared at me, very unimpressed, and goes “Are you done?  We need to recycle this.”  Ha, and here I thought I had a few years before I became embarrassing to her 😊!
  • The cold is really starting to set in, and I am very thankful for a garage! First time in 13+ years we’ve had one during the winter and it is marvelous.

This post is a part of Microblog Mondays.  If you want more, please check out Stirrup Queens!  Thanks to Mel for originating and hosting.  

Meditations on Moving

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One of the few authors I’ll spring for straight up (instead of waiting at the library or until I find it on sale) is Louise Penny.  I’ve written a few (okay, okay, probably more than a few) times about how much I love Penny’s mystery novels here.  She’s one of the authors writing today that I really want to meet, though I’ll admit that I’m a little terrified that if I did, in fact, meet her, I’d just fan-girl all over the place and embarrass myself.

In any case, Penny’s latest, Kingdom of the Blind came out last week and I’ve spent the last few days reading.  Yet again, I’m struck by Penny’s ability to get to the heart of life, living, and human emotions.  One of my favorite parts of the books are the author’s note at the end, where Penny writes so evocatively about her own life and struggles.  For a number of years, Penny’s husband Michael suffered from dementia and died in 2016.  Penny has also been open about being a recovering alcoholic and the incredible loneliness, anger, and sadness she felt for so long as well as many wonderful things she values in her life now.

“A funny thing happened on my way to not writing this book,” Penny notes, “I started writing.”

“How could I go on when half of me was missing?  I could barely get out of bed.” She continues.  “But then, a few months later, I found myself sitting at the long pine dining table where I always wrote.  Laptop open.”

I relate to that in such a big way.  While I’ve never lost a spouse, I have lost loved ones, as well as other, less tangible bits and pieces along the way.

It’s hard, losing, whatever that loss comprises.  Especially at this time of the year, when everything seems suffused with traditions and the place at the table seems all the more empty than usual.  When it’s impossible not to remember and the commercials and pictures and expectations are designed to evoke emotions that often I’d rather leave in the background or unexamined.

Sometimes living, moving, feels a bit like a betrayal.  With an ache that has the sharpness of a gunshot echoing from 2015 and holes that rend the threads to keep weaving it all together, it feels impossible to tie the knots and work to keep creating.  To set the empty place and also hold the feast.

That’s been a struggle for me lately, even though my grief isn’t new.  I’ve reached that sort of half-mourning stage, where the sadness doesn’t seep into every moment or corner, but comes out at both expected and unexpected times with a startling strength.

I’m grateful to Penny for not denying the darkness, but also for the joy she takes in how moving forward encompasses her loss: “Far from leaving Michael behind, he became even more infused in the books.  All the things we had together came together in Three Pines.  Love, companionship, friendship.  His integrity.  His courage.  Laughter.”

In so many ways, that’s what I’m seeking.  Not to leave behind, but to hold the love and live.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

Infertility Quirks

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When I first went to the fertility clinic to start injected medications, I remember literally choking on something I was drinking when I called the specialty pharmacy and they told me how much foll.istim cost.  It’s still pretty mind-boggling that I only did a spit-take over the cost and then more or less went, “okay, so where do I sign?”  (Back when I was going through it, a vial cost just slightly less than $1 USD for 1 unit of the drug.  And if I bought the smaller size vial, the vial was usually overfilled by about 30-50 units, so it brought the cost down slightly.  But yes, a *lot* of money.)

Anyhow, this induced a really bizarre association in my brain that persists to this day: I measure the cost of just about everything in terms of how much infertility treatment cost.

New couch?  About one to one and a half vials.

New flooring? Around the cost of the drugs for two fresh IVF cycles.

Chimney cap? About the cost of clinic fees for a TI cycle.

Down payment on a house?  About two fresh IVF cycles plus the FET thrown in.

This last was particularly good when the mortgage banker gave us a sort of startled look after he quipped about the down payment being the biggest check most people ever write and I just started laughing.  It wasn’t really funny, but it was either laugh or cry.

The kicker in all of this was that when we wrote the checks for house-related stuff, it was a guarantee – we were actually getting a house, the flooring had a delivery date scheduled, and we could look at samples and touch fabrics for couches.  We weren’t paying for a 25% chance that we’d get the house or a 30-50% chance that the flooring would come.

There’s still a sense of unreality about every check I wrote during infertility, especially now, pitted against the tangible things that money can buy.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.

 

 

Thinking Through my IVF/RE Experiences: Part 2

This is the second part of my coming to terms with my IVF/infertility treatment experiences, picking up when I switched doctors.  Read Part One here.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What was the difference between the first and second RE?

I switched because my second RE was the doctor who “officially” diagnosed my miscarriage.  He was kind and compassionate through that awful moment and promised that he would *personally* talk to my OB/GYN to help arrange the D&C.  I was super surprised the next day when my OB/GYN told me that 2nd RE had, in fact, actually called and talked to OB/GYN.  It was probably one of the first times I’d been promised something in that office and it actually happened.

I mean, that was the biggest difference.  2nd RE actually followed through on his word consistently.

I also appreciated the fact that 2nd RE wasn’t nearly as uncomfortable with the really strong emotions that come with IVF as 1st RE (2nd RE was a lot younger than 1st RE, so I wonder if that played a role).  After my ectopic/miscarriage (following my FET), I walked in for the follow up appointment loaded for bear, so to speak.  I cried for pretty much an hour plus, and I really appreciate that he didn’t try to cut me off or tell me that it was okay, we could try again.  He told me that it made total sense that I was upset, that we did need to take a break at this point.  Also, he was in favor of limiting the number of IVFs – 3 fresh was his personal max in my situation, and as he put it, that was only if we wanted to go that far at all.  It was helpful to hear that he wasn’t advocating for more and more and more and that it was okay to say enough.  In that follow-up, we decided we’d do one more round of fresh IVF, but if that failed, we were probably done.  He supported that decision.

2nd RE also was willing to try things that helped me get through.  I asked, prior to my FET, if my embryos could be grown out to blastocyst stage (they were frozen at 3-day) prior to transfer – and if they couldn’t get that far, then at least I’d be spared the 2 week wait.  Even though this wasn’t clinic protocol, he was fine with that.  He also would call me personally if things were changing/not going well/etc.

Did things go perfectly after that?

No, I mean, there were still communication issues at times between staff in the clinic, but it was better.

What helped?

I mean, honestly, it’s amazing how far listening and basic compassion goes.  Don’t sell false hope.  Follow through on your promises.  Keep in communication with patients.  Respect limits and boundaries.  None of this is reinventing the wheel – it’s stuff clinicians should be doing.  Unfortunately, it’s time consuming, and I think this is where problems come up.  My clinic offered a complimentary session with an infertility counselor with IVF, but it’s not really enough.  It’s not something that can be entirely outsourced – the doctors and staff at clinics have to be involved.

One thing 2nd RE did that I found helpful was that he gave me his personal work email – the one that went directly to him.  Funny enough, I never wound up using it.  But it took a HUGE load off me mentally to know that if I had one of those questions that wasn’t serious enough to call the on-call physician at 2am but was bothering me, I could send an email.  It also helped to know I could contact him using my own words and not have to rely on someone else passing the message along.

Also, when 2nd RE had bad or mixed news, he would sit down with us – I mean, physically, sit down.  I know this sounds sort of strange, but it helped because he wasn’t sort of “standing over” us and could make eye contact that way.

What are some thoughts on clinics and the experience?

I think one thing I would say to infertility clinics/staff is that even a single failed cycle, whether that’s IVF, IUI, whatever, can represent an enormous loss to the patient.  It’s time lost, emotional endurance lost, and as crass as it feels to mention money, it can be a big financial loss.  I mean, a single cycle of IUI or TI with injected fertility meds for me cost around $800-$2500, plus the time and emotion that goes into it.  Even clom.id or fem.ara, with timed intercourse, while cheaper, still ran about $150-$300 including the ultrasounds.  That’s not impossible, but it’s not an inconsiderable expense either.  By the time my husband and I got through infertility treatments, we had spent >$40,000.  For perspective, we spent about as much on a down payment for a 4-bedroom house + some new furniture + some new flooring.  We don’t live in a super expensive area, admittedly, but it’s still a boggling comparison.  Having a cycle fail doesn’t just mean all the emotional losses (which are considerable as well) but also a sickening amount of money and financial stability in many cases.

I was really grateful when the fertility clinic I used took down all the baby collages that patients could see.  I’m fine with clinics having stuff like that in strictly staff-only areas, but I remember really clearly passing the “baby board” with my miscarried fetus still hanging out in my uterus and feeling like someone had kicked me in the face.  I did not find it “hopeful” or helpful to have those out.  It made me feel like a defective failure.

It would also be nice to see “success” and “failure” re-defined when it comes to infertility.  I’m not a “success” because I had kids – I have absolutely no idea how I managed to pull that one out.  In other words, it’s not because I did something “right” or “wrong”, it’s just how things worked out.  Likewise, I wasn’t a failure when my cycles weren’t working and I miscarried twice in a row.  I would love to see clinics be much more mindful of patients as whole human beings who have intrinsic worth and dignity regardless of whether or not they have children.  I view success – when it comes to infertility – to be comprised of having a life one considers full and meaningful no matter what that looks like.  Basically, coming out on the other side is a huge victory.

Thinking Through My IVF/RE Experiences: Part 1

Over the years, I’ve sat down more than once to try to write about my experience with my first RE and IVF in general.  It’s proved trickier than I thought.  Some of it, I’m sure, is that women are socialized not to express certain (negative) emotions.  Some of it is that it seems like something I should be over.  A big part of it is survivor’s guilt.  I mean, I have kids at this point, so it seems sort of ridiculous to complain.

And yet, parts of this story still bother me because they should not have happened.  In real time, I was so deeply invested in the process, I couldn’t really dig into considering them, even in my own head.  I was all about acknowledging that something had happened, but also sort of glossing over at the same time.  At this point, it’s not so much about my personal stuff as entering a conversation about how to improve care for infertility patients in fertility clinics.

I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.

What went wrong with the first RE?

I’ve mentioned before on the blog that at the first consult with him, I expressed that I understood with PCOS that wasn’t responding incredibly well to drugs like Clo.mid and Fem.ara, it could take some time to get to the point where I was pregnant and that I had a wedding in June (this was in March) that we’d need to work around.  He sort of smiled and went “Oh, I think I can have you drinking water at that wedding instead of wine.”

I hate to say this, but while the rational part of my brain was going nope, nope, nope, the sad, worried, fearful part of me really wanted to hear that.  Because here was a guy who was confident and felt good about the whole situation.  He brushed away my concerns about being able to come in for ultrasounds during cycles because of my work schedule (“We deal with that all the time”).

Things escalated a little when I got a cyst after my first cycle on injected fertility medications, which I hadn’t realized could happen.  So I had a cancelled cycle and had to rest on birth control for a month.  The next cycle resulted in a huge overstimulation for TI/IUI and was cancelled as well.  I was getting concerned because I was going in for ultrasounds quite a bit – which hugely negatively impacted my work schedule, contrary to my doctor’s reassurances at the initial visit.  I then did a cycle with Fem.ara + injected meds, which was cancelled by a different doctor in the practice due to under-response (my doctor was on vacation) and told to consult with my doctor when he got back.  It was late June by this time.

My doctor was hard to schedule with because he was “so busy” according to the clinic.  We agreed to a phone consult.  My doctor told me he wouldn’t have cancelled that cycle, would rebate my clinic fees (which we appreciated) and would personally supervise my next cycle.  “Good,” I told him, “because my period is starting.”  We booked the next cycle and I started shortly thereafter.  A week later, I was told by the nurse at the clinic that one of the other doctors would review my lab/ultrasound results because my doctor was on vacation.  I was furious.

The July cycle went wonderfully, a really good stim, but I didn’t get pregnant.  I asked to talk to my doctor again, was able to get another phone consult, and expressed that I was a bit upset he hadn’t personally monitored my cycle as he had promised.  He basically told me that he got to go on vacation and implied that my expectation that he would personally monitor my cycle was expecting far too much.  He was so convincing, I remember doubting my memory and asking my husband if he too had heard the doctor promise to monitor the cycle personally.  My husband was certain he’d heard the doctor say that too.

We decided to move to IVF because we were losing a *lot* of money on drugs, fees, and lost work for cycles that were being cancelled.  It was obvious that my ovaries were super touchy and didn’t necessarily respond predictably.  I was going in a lot for monitoring.  We figured that if we did IVF, we’d be able to do one cycle with all the monitoring and have a higher chance of pregnancy.  I again phone consulted with my doctor in late August, explained to him that I had started a new job, and that we were thinking IVF.  I had planned to possibly do the IVF in February or March of the next year and settle into my new job.  “We could get you in this fall,” my doctor told me.  Because I really, really wanted to be pregnant, I agreed.  I explained what I did at work and asked if there was anything I should know about IVF that would affect my job differently than any other TI/IUI cycle with injected meds.  He told me to plan to take one day off for egg retrieval and two days for transfer.

A couple weeks later, I called the clinic to finalize some details and the nurse mentioned in passing that I would have a 25 lb lifting restriction and restrictions on bending.  My job involves a lot of lifting and bending.  I just about hit the roof.  But my doctor was out of the country on a 3-week mission trip and I had to make decisions right then or delay the cycle.  We had already scraped together the money and I was desperate.  I made a poor choice and went ahead.

The cycle proceeded, I was very anxious, and 15 eggs were retrieved.  The day after my egg retrieval I went back to my job, where I would be on my feet for 8 busy hours.  I had to leave partway through the shift because I was in so much pain.  Two 3-day embryos were transferred, 2 were frozen, and I went home to wait.  I had my beta a day early because my husband and I were both off work that day.  Though the clinic nurses called me to tell me I had a positive beta and was pregnant, my doctor also called me personally to congratulate me.  I appreciated that enormously.

Of course, I got googling (ugh) and realized that even for the day it had been done, my beta seemed…low.  But it doubled appropriately, then exploded.  Even so, I could not shake a nagging feeling that I didn’t “feel” pregnant at all.  Nothing.  No tender breasts, no nausea, nothing.  When I went for my first ultrasound with a different practice doctor, the doctor found that I had 2 gestational sacs, both with something inside but only one with a heartbeat.  The next week I went for another ultrasound with my doctor to check on the one with no heartbeat to see what was going on.  Still no heartbeat in the one, but a beautiful, perfect heartbeat in the other.  He was effusive, excited, and told me to send him photos.

The bad feeling never went away.  Finally one weekend, I found myself almost hysterical with anxiety.  I knew something was wrong.  I called the clinic Monday and they scheduled me for a scan to reassure me (with one of the other doctors in the practice, my doctor wasn’t at my location that day).  I remember feeling the cold wash over when I saw the baby come into view.  I knew there was no flickering of a heartbeat, and the ultrasound tech’s immediate “I need to go get the doctor” told me everything I needed to know.

My doctor never called.  Never said a word.  Never told me how sorry he was that I’d miscarried.

Do you blame your first RE for the miscarriage?

Not at all.  I had known in my gut something wasn’t quite right from the start and unfortunately, miscarriages aren’t particularly uncommon.

In hindsight, are there some things you would have done differently?

I would have changed doctors after the situation where he told me he would personally monitor my cycle and then didn’t – particularly after he tried to play it up like he never would have said such a thing.  I work in healthcare.  It is totally good for healthcare workers to take breaks, vacations, etc.  I absolutely support that need.  I also totally understand that emergencies happen, but based on what the nurses said at the time, they specifically said vacation and he later confirmed that.  There is absolutely nothing wrong with taking vacation.  But I had/have a huge problem with the dishonesty.  The truth is, I suspect that he just completely forgot what he said to me and really didn’t care.

I really regret not putting the brakes on that first IVF cycle.  It made things much more stressful at work (even though I had an extremely supportive boss and coworkers, thankfully) and once I realized that my doctor (again) hadn’t been 100% forthcoming with me, I wish I had insisted on waiting until I saw him to talk about the situation to do something as major and expensive as IVF.

I wish I had listened to the part of my brain that threw up the red flag in our first consult instead of playing it off as a bit of a misspeak and proceeded with more caution.

One other thing that, in hindsight, would have been good would have been getting a second opinion from a different RE before going for IVF (it’s worth noting that my first RE did not push IVF for us – we were spending so much on TI/IUI cycles that by the time we’d gone through a few, we were getting to the point where we couldn’t keep doing those for the lower chance of pregnancy, so we brought it up).  I was really intimidated by the idea of finding someone (the clinic I went to was the only one that had a local satellite office).  But even if I’d needed to go to the city where the main office was located or somewhere else entirely, I wish I had had someone review my chart/tests/treatments to that point just to sort of double-check things.

What are some things you would have wanted to see from your first RE?

The other day, Mel at Stirrup Queens posted a link to a project about the worst things people said to women who miscarried or had stillbirths.  I know, unfortunately, exactly what my chalkboard would say:

“Not one %$#%& thing.  Absolute silence.”

It still makes me really angry that my doctor could take the time out of his “busy” schedule to call me and congratulate me on being pregnant but when I miscarried, he couldn’t be bothered to take three minutes to say “I heard.  I’m so sorry for your loss.”  This is basic.  It’s not an onerous request, and I would argue that it’s an essential part of reproductive healthcare.

I also would have appreciated it if he had been much more careful when he was advising me what to expect from IVF.  He did not tell me about the lifting/bending restrictions, which were incredibly relevant to my job that I had told him about (I think he figured the nurses would go over IVF instructions and didn’t think it was his job).  I am also really frustrated that he didn’t encourage me to take a day off after the egg retrieval, especially since he knew I didn’t/don’t work a desk job where I might be able to take time to sit down.  I was in a lot of pain as a result.

Confidence can be a good thing, but I felt like his statement about water at the wedding instead of wine wasn’t a helpful thing to say.  It gave me some unrealistic expectations for the process/timeline and honestly, I felt horrible – like I had done something wrong – when I wasn’t pregnant by the time of that wedding.

He also came across as pretty dismissive when I would ask about how the various treatments would affect work or my life.  These were reasonable questions on my part and should have been treated/answered seriously.

 

Planning to have Part 2 coming soon…

Fabric Arts

I was in my late 20s before I had the courage to truly start enjoying fashion.  For many years, I spent a good deal of time veering between trying to fit in with what everyone else was wearing, being comfortable, and also trying to stay within the confines of “modesty culture”.  The result was pitiful attempts at trendy while also being too baggy and sticking to a bunch of silhouettes I didn’t really like but I had read were “flattering” to my body type.

Then infertility hit when I was about 30 and eventually, I started my tradition of dressing up when I go to the RE.  I mean, it’s weird, but if I’m going to get bad news, I prefer to do it when I’m wearing something I feel amazing in.  Being confident in how I’m dressed also translated into feeling more confident speaking up as well.

(Not that I’m recommending this for all infertility patients – I mean, you do you.  This just happens to be my particular quirk.)

As I’ve gotten a bit older, I’ve also finally managed to (mostly) ditch the body shame and realize that I can wear whatever I want in my life outside of work – if someone doesn’t like it or thinks it’s silly or unflattering, they can, uh, look elsewhere.  I love paging through magazines and ignoring stuff I don’t like while trying to incorporate the stuff I do into my wardrobe.  Getting dressed is fun these days.

I’ve also gotten into doing some adjustments to my clothing.  I recently added a lace ruffle to the bottom of a shirt that was too short for me (I am incredibly long waisted) and smocked the back of a cardigan that was too big.  I added belt loops to some skirts that just really needed accessorized with belts.

2018-08-28 15.51.33Lace ruffle makes it long enough to wear as more of a tunic style top, which is what I wanted.

I had seen a dress about a year or two ago that I really liked, but that was produced by a small-batch retailer and appropriately retailed for about $125 if I remember correctly.  It looked simple and though I coveted it to wear with boots and/or leggings, I just couldn’t justify spending that kind of money.  But with fall here, I kept thinking about that dress.

The relative success of my minor alteration projects made me dangerously overconfident when I went to Jo.Ann Fab.rics the other day to pick up some other things and walked out with a sewing pattern billed “easy” and some flannel for a dress that would look similar to the one I liked.  I got home, opened the pattern, and immediately went “uhhhhhh, whahhhht?”

Apparently garment sewing and patterns have a language all their own.

I’ve watched some videos now on how to read a pattern, how to cut out a pattern, and have washed/dried my fabric.  I’ve also sent out an SOS to my aunt who is amazing at textile/clothing arts and an advanced seamstress.  It really *is* a simple pattern, but I’m not sure if I’m going to wind up with something resembling this:

National PicnicThe National Picnic dress I liked

Or if I’m going to wind up with this:

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Goofing around with the fabric wound toga-style around me

Or, ahem, “The Emperor’s New Clothes” 😉.

Wish me luck.