Let's Talk About Invisible Disabilities

So I know I just touched on this subject a couple posts ago but boy have things changed since then for me! I'm not one to enjoy airing my "dirty laundry" on the internet, and I do like to keep my personal shortcomings to myself, however, I do see the benefit in sharing with others for the comradery and the education.

Last week, I was diagnosed with hypermobile Ehler's-Danlos Syndrome, which is a combination of multiple connective tissue disorders. While mine is clearly mild compared to many others, I still experience a good deal of pain, discomfort, and many other weird symptoms. 

This was a challenge for me as I have been searching for a diagnosis for a little over a year now. I've found out a few things like that I have some spinal issues like Scoliosis, which explains my awful back, but around May of last year I started with excruciating joint pain. I was tested for plenty of autoimmune diseases and did lots of blood work and everything came back fine. On paper, I'm totally healthy! But I've been well aware that something was wrong.

For the past few months I've been going to physical therapy for an unrelated issue (well, seemingly unrelated) and I decided to ask her about EDS since it's something I had been researching and figured she'd be plenty qualified to diagnose me. When I eventually brought it up, she said she'd look into it for me. I'm so grateful for her, since she came back to me last week with hours of her own research & with a test for me to diagnose me if necessary.

Needless to say, we did the test and she determined that I did, indeed, have hEDS. Now, in the eyes of insurance or what not, I'm not really "officially" diagnosed because I'd have to have genetic testing done for that. However, when I asked my PT if it was even worth it, since there's no cure or real treatment for hEDS, that she didn't think it necessary if it was expensive, but if it was a reasonable price, that I should! So I'm working on looking into that.

Since my diagnosis, I've not only been in excruciating pain from completing the Beighton Score test (see graphic below) since I basically pushed my joints to their limit of hyper extension, but I've been researching A LOT. I'm a "research girly" so when I find something new, I need to know it all; especially if it's something that affects me and could potentially affect any future children. 

At this point, I'm overwhelmed. There are so many different types of EDS and different levels of severity. While I'm pretty certain of my typing, I continue to identify symptoms of which I didn't know to be a product of the hEDS, for example, the weird, tiny red spots on my body and the fact that I had to have a palate expander when I was a kid. 

The weirdest thing for me is that this is something I've had my whole life. All of those sprained ankles weren't just because I was clumsy! Albeit I am still clumsy and highly accident prone, it's just the fact that I'm easily injured due to this disorder and not that I'm just sorely unlucky.

Me as a kid with my hyperextended knees.

While there is no cure or real treatment for hEDS, all I can really do is treat the symptoms & be careful when I'm exercising, and in general, as I am more easily hurt. I'm happy I have a diagnosis and a direction, but it's also bittersweet knowing there's not really anything I can do about it other than take a crap ton of ibuprofen, do some physical therapy, and just basically suffer.

I've joined a support group on Facebook and have already learned so much & have been welcomed with open arms. I'm grateful for them, as no one understands better want I'm dealing with than others who are in the exact same boat!

I could talk about hEDS all day and list all the noted symptoms, talk about the guilt and the pain, but I've done a lot of that in my previous post and there are lots of resources online. Fortunately, even though it's relatively rare, there's a decent bit of research that's been done on the EDS and HMD spectrum. If you want to learn more, I recommend checking out the Ehlers-Danlos Society site.

One more thing-- I'm sure you're wondering why this post is "zebra-themed." That is because zebras are the symbol for those with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD)! People with these conditions are often unexpected, so the symbol comes from a common medical expression, "When you hear hoofbeats, think horses, not zebras," which means to look for the more common diagnosis instead of the surprising one.

Some people don't even have a support system at all, let alone people who understand, so to say I'm grateful is an understatement, and I want to be that person for those who don't have that. So if you're going through health issues or anything and just need someone to talk to, shoot me an email or DM me on social and tell me you came from this post and I will be more than happy to help any way I can! I am the unofficial doctor of my family and use my research skills to help out a lot! I'm happy to do that for you too. :)

XO, Briana

Beach Babe Fashion Round-Up

If you know me you know my style -- beachy, casual, lots of prints & color. Recently, I've been collecting some super-cool pieces that I'm dying to add to my wardrobe but haven't just yet. But of course, I'm keeping a close eye on them! 

I've been trying a lot harder, especially over the summer, to actually dress up when I go out instead of just keeping on the bike shorts and t-shirts I typically wear while I'm at home. So I'm working on updating my wardrobe from 90% Hello Kitty tees and sweats to clothes that really fit my style! So without further adieu, here's a look into my dream closet!

Asymmetrical Denim Skort

When I saw this skirt I fell in LOVE. Now I am definitely NOT typically a skirt girly, however, this is a SKORT, which us millennials know and love and also make fun of Gen Z for bringing back, but I'm seriously here for it. Anything that can dress up my graphic tees is an A+ in my book. This particular skirt is currently unavailable, but I've seen this style around!

Jupe Short Jessie by Lilli with Love Shop
Image by shop owner, lindsay_lfb

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The Perfect Casual but Dressed Up Combo

This outfit stopped me in my tracks because of the unique styling! The outfit itself is adorable with the super girly top and printed pants. However, what I really love is how she easily dressed it down with a baseball hat, wicker bag, and casual sandals. I would normally style this with a more dressy shoe, some gold jewelry and a done up hairstyle, but I really love this take to really get the most out of this outfit! Plus, I am eager to hop on the baseball cap and plumeria clip trend!

Photo by sarahtey_

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Lei Printed Overalls

I just can't get over how stinkin' cute this overall jumper is! I've hesitated to buy pieces like this because they don't always work on me because of my height and shape, but I am in LOVE with this particular one. Plus I am a huge sucker for a good Hawaiian print! (P.S. If you're a mama, they have a matching one for your little!)

Starlye Overalls Brown Multi Lei
by Lola Miller Designs - 

simplysistersbylola

Beach Babe BOSS Professional in Prints!

There's nothing I hate more than boring business casual. Like I said, I love color and print, and when I do find myself in a professional setting, I like to keep my personal style and personality in what I wear. You'll never find me in just a plain, black business suit. As a small business owner, I am working on building a small professional wardrobe and these pieces from Lexbreezy Hawai'i are just chef's kiss. It's the exact energy I want as a boss babe -- perfectly pairing bold, Hawaiian prints with traditional pieces like blazers, dress pants, and jumpers. If I could have a full wardrobe of these suits I would. Plus, bonus, they carry plus sizes!

Both by 

lexbreezyhawaii

Croc Leis

Need I say more? I have always been AVIDLY anti-Croc. I still think they're ugly, but I can't deny that they're "in style" and also extremely convenient and comfortable. I do own a pair that I mainly wear to run to the mailbox or if we're just taking a drive and I'm not getting out of the car. However, these lei jibbitz have me swooning and yearning for a pair of simple white Crocs to show them off. 

Croc Leis by Only Aloha Here - 

onlyalohahere

Embroidered Baby Tees

I love a crop top or baby tee with loose jeans or shorts and these are just so fun! I always appreciate embroidery because I genuinely believe it makes the graphic higher quality and last longer. These ones by Kia's Threads are all hand done and just so super cute! (P.S. She also makes really cute hats!)

Both by Kia's Threads - kiasthreads

XO, Briana

Let's Talk About...Chronic Illness

Something I pride myself on with this blog is being transparent and open about different things in my life, my health included. I think it's important, even more so these days, to share our experiences with others so we can continue to educate people on things that aren't necessarily common knowledge. Health is a big one of those subjects, especially with so many conditions that are relatively unknown and underdiagnosed, but not necessarily uncommon.

The past year or so I have been on the path to a diagnosis. I've always had health issues, being born with Asthma and developing PCOS just to name a couple, and that has made it even more difficult to pinpoint the cause of the issues I've been dealing with.

I'd been dealing with back pain so bad that I couldn't stand it anymore and eventually went to a chiropractor. There I did receive multiple diagnoses, one of them being scoliosis, and found some relief from continuing visits. However, the prescription of adjustments two to three times a week has wound up being unsustainable, especially since I've since moved an hour and a half away.

Since then I've developed terrible joint pain that flares up now and again and makes everything harder. There are days when I'm totally fine and then the next day I can barely move without wincing in pain. Everything is hard when basic movements put you in excruciating pain and it takes a toll on your mental health too, especially at my age.

I'm young and growing in my career and looking to grow my family soon, I shouldn't have to be worrying about whether I'm going to be able to move in the morning. It is beyond frustrating, but at the same time, I wind up feeling guilty and experiencing major imposter syndrome because my pain isn't THAT BAD and other people have it SO MUCH WORSE. While that may be true, it doesn't make my feelings and problems any less valid, albeit hard to admit.

As of now, the rheumatological and autoimmune diseases I'd theorized to be the problem were ruled out. Now we're looking at my thyroid and I've researched a few other things. Each appointment, each set of lab results gets me excited to finally have an answer, but it still hasn't come. But as it is for many others, the diagnosis game is a long one and in the meantime, I basically just have to suffer or develop a dependency on Motrin.

Sticker by TheChronicChaos on Etsy

It's really a lot to deal with on your own. Even though I have a wonderful husband and family who are very supportive, not everyone really can understand what I'm dealing with unless they've gone through it themselves. While I am chronically ill, it's also an invisible illness. I am very good at hiding it and I "don't look sick" so it's even harder for people to understand and makes it even harder for me to understand, as I find myself looking for physical symptoms to make myself feel worthy of getting help.

Some people don't even have a support system at all, let alone people who understand, so to say I'm grateful is an understatement, and I want to be that person for those who don't have that. So if you're going through health issues or anything and just need someone to talk to, shoot me an email or DM me on social and tell me you came from this post and I will be more than happy to help any way I can! I am the unofficial doctor of my family and use my research skills to help out a lot! I'm happy to do that for you too. :)

XO, Briana