Author: bpesisters

Under the knife

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My sister and I were chatting last week about her participation on the BPES Facebook group. She brought up how a dominant topic in the conversation is around surgery.  We are so grateful that it was not medically necessary to have surgery as children. I mentioned on the pages of our site my entire surgery journey as an adult. One of my largest fears going into surgery was that I wouldn’t look the same and I would lose my identity as me. I was worried something would go wrong and my eyes would be permanently damaged. Thankfully everything went very well. I do look slightly different and I miss my smaller eyes (can you believe that?). I remember soon after my surgery a very dear friend of mine comment that they preferred how I looked before the surgery. That stung a bit.

Overall, I don’t regret my surgery because my eyes were slowly closing. Having surgery significantly improved my quality of life. Of course I would do it all over again. I am a bit jealous of my siblings though as none of them have needed surgery. I can live with having gone through one surgery even though I really really would have preferred to have never gone under the knife. I only hope that the surgery holds for the rest of my life and I don’t have to do it again. There are cases were as you age, the muscle gets weaker and needs to be lifted again.

Even though I feel hypocritical saying it, my sister and I are happy to advocate that there are situations where you don’t have to have surgery with BPES. We’re so grateful it (mostly) wasn’t medically necessary in our family.

J3

Color Me Bad

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I have been a Rihanna fan for a long time.   I follow her on Instagram, and I love when she posts her outfits and snapshots from events that she attends.  Over the past year, she launched a makeup brand called Fenty Beauty.  I love that her brand is very inclusive and offers a wide variety of different shades for every skin tone.

Recently Rihanna posted about a new eye palette that is coming out called Moroccan Spice:

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These colors look so fun, but it makes me sad because I just can’t get bold colors to look right on my eyes.  The only one I could maybe pull off is “Mo’rockin Ice.”

Normally I forget that I have BPES, but every once in a while, something like this pops up in front of me and reminds me that I do have some limitations.  As I have posted about before, I find that pretty much only white eye shadow seems to work on my face, because my eyes and eyelids are so small.  Anything darker than white overtakes my eyes and seems to make them look even smaller.

Obviously this limitation is superficial, and I am grateful to be healthy.  And I can still enjoy her other products, like foundation and lip gloss.  But I can’t help wistfully staring at these great colors.

2.0

Frozen eggs part deux

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Even though my sister and I are very close, this website is such a fun project because we learn so much about the other’s  perspective on BPES. We don’t typically talk about our BPES because it really doesn’t affect us all that much. Many times we are learning about the other’s  experiences and opinions for the first time as we read each other’s posts. So much fun!

In her last post, my sister talked about other young women with BPES freezing their eggs. That blew my mind! I’m grateful our condition wasn’t fully discovered until the late 90s so this was never an option for us. I appreciate parents trying to give their kids options. Personally, I’d feel too much of a weight on my shoulders if I had frozen eggs as an adult. What if you didn’t want kids , and here you have the eggs that your mom had frozen for you. Crazy! That’s a life question I’m grateful that I personally don’t have to answer.

J3

Back to the Future

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Since I joined the BPES Facebook page, I have enjoyed reading everyone’s posts.   I saw one the other day that really caught my attention.   It was from a mom who posted a picture of her daughter who has BPES.  The caption mentioned that her daughter is about to turn 10.  She went on to say that her daughter had an upcoming doctor’s appointment where she would get tested to find out if she has Type I or Type II.   And if they find out she has Type I, they planned to get a consult for IVF and having her eggs frozen.

When I read this, my first thought was, would that have been me if we knew what I had?  When my brothers and sister and I were born, we were told we just had ptosis.  We had no idea until recently that the ptosis was only part of it.

But this post made me realize, if we had known, would I have gotten tested and have had to start thinking about freezing my eggs at 10 years old?!  I’m pretty sure I was still playing with Barbies at that age.

In some ways, I am glad that I didn’t know, and was blissfully ignorant.  I had enough to worry about in junior high and high school, and can’t even imagine if right after I started getting my period, I would have had to make a decision about freezing my eggs.

I am happy and have no regrets in my life, but I can’t help but be curious at how differently my life would have been if I had known about my BPES from birth.  Until I started reading other people’s stories, it didn’t even occur to me how differently my childhood could have gone.  Reading this post made me grateful that not knowing probably eliminated a lot of stress from my life.

2.0

(Don’t) smile for the camera – now click!

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Recently l went through the “saga” of having to get a new passport, for reasons that are a story for another day.  This process included having to get new passport photos taken. In theory getting passport photos taken is something you should only have to do every ten years or so. I travel abroad fairly often and in the last few years, I’ve had to get identification photos taken several times for various visas and IDs, each with different specifications for photo dimensions. US passport photo requirements have changed and now you can’t wear glasses in your passport photo. Other countries require that your eyes fit within certain centimeter dimensions for an official photo ID. While simply taking off your glasses sounds like no big deal, for someone with BPES, these specifications can be a nightmare. Getting passport pictures taken is such a mental obstacle to me, that I go through great lengths to avoid having to do it. For example, I still keep a huge stash of passport sized photos that I printed and trimmed myself years ago on a photo printer at home based on a photo I had taken that met passport photo specifications. Crazy schemes like this often backfire on me because photos have to be recent and the requirements are often changing.

A colleague ran into a snafu recently with getting his passport replaced. As we were commiserating this week over the bureaucracy of getting a passport, particularly while abroad, I realized that part of my resistance to passport photos stems from my eyes. Oftentimes when getting my picture taken, the photographer will prompt me to open my eyes wider. I used to get so frustrated when someone told me to open my eyes. It drove me crazy because I would always think – if I could open my eyes wider, don’t you think I’d do it?! On one of my latest rounds of passport photos, I sat with the photographer for five minutes where he kept telling me to relax my eyes. With my eyes being so small, the picture wouldn’t meet the ID photo requirements. It was insanely frustrating for both of us and I felt really stupid. He didn’t realize I had small eyes and it seemed he thought I was squinting on purpose. Other people came in and it took less than a minute to snap their photo. In the end I got my photos, but the entire experience made me feel awful. At best it should have just been an annoying quick errand, instead of me feeling incompetent, foolish, stupid, embarrassed, and frustrated. Clearly it made its mark, with damage to my psyche because now I’ve built it up in my mind that getting passport photos is SUCH a hassle.

Just another small annoyance of having BPES.

J3

It’s a Group Thing

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So I did it.  I joined the BPES Facebook group.  It was a closed group, and I had to answer questions to get in, but I was accepted.  So far, most of the posts have been parents posting about their kid’s surgeries, or new parents who just discovered their child has BPES.

I found it ironic because having BPES, I most likely can’t have kids, and it seemed like this whole feed was posts about kids.  I was glad to see as I was scrolling through that there was one post from a girl who looked like she was in her 20s.  She had dressed up and was going to an event and posted a picture.

As I was perusing the page, I also read through some of the comments, and everyone on the site is very supportive.  I was happy to see this, because I have no time in my life for negativity.  I was able to relate to comments about the eyes getting male attention, being mistaken as Asian, and not having to worry about as many wrinkles under the eyes.

I have mentioned this before, but it is simultaneously cool and weird to see people who look like me, but are not related to me.  So far I do not regret joining the group.  Even though there are almost 1500 people in it, there is only about 1 post every day or two, so it is not overwhelming my Facebook feed.

I am not sure if I will ever personally post something about myself, but so far I have enjoyed reading through other people’s posts.  2.0

Lost baggage

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I’m on vacation this week with friends and one of my traveling companions unfortunately had her luggage lost. We’ve been trying to make the best of it, with everyone in the group offering what they can to try to supplement her lost luggage. There’s no worse feeling than not having your own stuff so you can truly enjoy your vacation. I am a pretty low maintenance lady and I felt terrible that I didn’t have so many things with me that perhaps other women might, such as make up, foaming face wash, bobby pins, and tinted SPF moisturizer. My friend and I sadly laughed that if she had been on a trip with any other female friend, this probably wouldn’t have been as painful for her.

Over the course of the last 48 hours as we’ve waited for her bag, at different points in our trip, she’d ask if I had a certain item. It struck me when she asked if I had any eye cream. I burst out laughing because I actually own eye cream, but I don’t really use it and I certainly don’t travel with it. I think I bought it in a moment of self-absorption because I thought it would help with early signs of crows’ feet. I’ve always wondered what is the point of eye cream. I’d see it so often advertised for women in particular to have younger looking eyes. With our BPES, we don’t get bags under our eyes or at least we haven’t yet. I’ve never really had a true need for it or understood what it does. My friend assured me that it perks up tired eyes. I am intrigued and we laughed together that my eyes are so small, I’ve probably never really experienced the need for eye cream. While I hope her baggage is found quickly, I hope to not see bags under my BPES eyes!

J3

Wine Time

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I just got back from an amazing relaxing vacation, and have been fighting jet lag this week, so the post is a bit late.  I had a great time in the Douro Valley in Portugal.  I had no idea how stunning the landscape would be.  It was just such a peaceful place.   I love living my life in a city, but it is great to vacation in a tranquil environment.

I have always loved traveling and am proud of how many places I have managed to visit.  I can’t help but think that if I had kids, I most likely would not have been able to go to many of these places.  I still can’t believe how lucky I am that I just got back from a spa in a UNESCO World Heritage Site, and had the opportunity to do wine tours of these amazing mountainside vineyards.  Just look at this view!

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It is times like these that I embrace the positive side of being infertile as part of having BPES.  I can’t imagine my life without travel.  I already have my next destination planned for later on this summer…stay tuned!

2.0

Are you two sisters?

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This week my sister and I are together on vacation! We are having a wonderfully relaxing  week and taking some  much needed time to unwind and spend time  together. We noticed throughout our travels this week, no one has commented on how we look alike or asked us where we are from. It’s been marvelous!

During high school we both worked in the same place in a family owned business that consisted of three different stores. Oftentimes customers would go between stores and think we were twins working  in two different locations. It drove us nuts because while yes, it is pretty clear we are sisters, due to our eyes, we think we look nothing alike. Whenever people ask us if we are sisters or ask more about our eyes, it can be annoying. Sometimes we’d think, can I order a cup of tea without having to answer personal questions for a total stranger?!

This week it was so refreshing to not have people ask about us or our appearance at all. It makes our trip all the more enjoyable.

 

Spring Itchies

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Spring is finally here!!! Where we live everything is in bloom and it is gorgeous. I’ve been trying to get outside every chance I get. I forget that spring can be a very uncomfortable time for people with allergies. This week at work I was chatting with a colleague who shared that he was miserable with sinus pain as there is so much pollen in the air. I have a sneaking suspicion that as I get older based on all the environmental toxins out there, I’ll inevitably get some form of allergies. All the more reason for me to savor these seasons while I can.

Talking to my colleague about spring allergies brought me back to my childhood. When we were younger, my mother, older sister, and older brother had terrible pollen allergies. I remember how my brother would be constantly rubbing his red, watery eyes and sneezing miserably as trees bloomed outside. I thought he was such a grouch and I didn’t understand why he seemed to complain so much. Every spring our household would explode with runny noses, itchy eyes, and foul attitudes… for half of us. The other lucky half, me, my younger brother, and my dad, were allergy free. Say what you will about OTC drugs, but when Claritin finally was available without a prescription, life became much calmer in our home.

When I was younger and I’d watch my brother suffer through the spring, for awhile I thought it was related to our small eyes. I thought his eyes were red, itchy, and runny as just another one of those things that made us different. Eventually I came to understand allergies can happen to anyone. I truly just don’t think that much about allergies because I have been so fortunate to never have them. Looking back, I really feel for my mom and my siblings as they suffered through each spring. As a recurring theme with BPES, especially as a child, so often we’d experience something related to our eyes and I would have such a hard time deciphering if this was “normal” or happening because we had small eyes.

As I take a deep breath in this afternoon on my patio, relishing the fresh, clean spring air, I am reminded that although I have BPES, I can appreciate that I don’t have allergies.