Cracked.com Talks EDS, Fails Miserably

Today, Cracked.com posted an article, 6 Weird Realities of My Life With an Awful Superpower". The article was about Stephanie Erdman's experience with EDS, and while everyone with EDS is different, I couldn't get past some of the glaring inaccuracies and omissions perpetuated within.

The largest error with the article is in regards to the different types of EDS. It's incredibly important when writing about EDS to point out that there are several different types with entirely different symptoms. In the case of the Cracked article, this information isn't included. At the end of the article is this blurb:

"Author's note: I also wish to recognize that there are also several terminal forms of Ehlers-Danlos syndrome, and my experience isn't the same as that of people with those forms. Also, invulnerability to pain meds has actually led to suicides, because the disease becomes impossible to handle, leading some of us to self-medicate. Sorry to save all the bummer for the end."

Okay, so all the reader gets is a vague reference to "several terminal forms" and the standard 'Everyone is different' explanation. What about the other non-terminal forms of EDS? Why are we not naming them? The article does not even link to an overview of EDS. Not even a quick hyperlink to Wikipedia, which is better than nothing.

Another big problem with Erdman's view is that she perpetuates the "circus freak" stereotype of EDS. I don't know about you, but I try not to show off my dislocations and ability to fold myself like a pretzel. She also includes supposed symtoms that have nothing to do with EDS. 

• Point #6 of the article is "Giant Stature (Along With Giant-Sized Growing Pains)". Large stature is not a common attribute of EDS, in fact, it's more commonly linked to Marfan Syndrome, a completely different connective tissue disorder.  
• She refers to EDSer's brains being "prone to short-circuting" and includes a link to this PubMed paper. That paper says nothing about brains "short-circuting", and the only mention of brain issues at all is in reference to patients with Down Syndrome, not EDS.
• Point #2 talks about "The Ability to Tap Into the Secret Side Effects of Prescription Drugs" with zero link to EDS whatsoever. 

My biggest issue overall is that she completely downplays the seriousness of living with EDS. Though the article is about her personal experience, it's written as though EDS is a moderate annoyance in life/a cool parlour trick, and while it may be for her, she should still point out that EDS can be a severely disabling condition for others. 

Basically, I'm disappointed that what could've been an awesome article spreading awareness is nothing more than an inaccurate, sloppy mess. Cracked could have and should have asked more EDSers about their experience with the condition to get a full view of what life with EDS can really be like, as opposed to writing an article that is wanton click-bait.

On top of it all, when I went into the forum to point out and dispell some of the errors via Q&A, one of the mods locked my post. When I posted another thread with a clearer statement, she deleted it. Well done, Cracked, you won't even allow discussion. What the fuck is the point of a forum if not to discuss? 

I'm frustrated.

How Being Diagnosed With A Disability & Being In The Hospital Helped Me Overcome My Body Image Issues

I've been M.I.A from the blogosphere for a while now, but I've returned, and I would love it if you would all share this one as far and wide as possible! (URL: http://jesshaseds.blogspot.com/2014/07/how-being-diagnosed-with-disability.html ) 

This post was inspired by the body shaming media, and all the women (and men!) who suffer from body image problems of all types. So, without further ado, this is my story. 

                                                                                                       -Jess 

     We all are taught from a young age that being stick thin and flawless is the ideal body type. We endure brainwashing at the hands of the media, who airbrush and photoshop flaws away. I was one of those insecure teenagers, some years ago, who longed to look like the models in magazines. Instead I looked in the mirror to see a 5' 3.5" chubby girl that I was sure no boy would be interested in. This is the story of how I overcame the insecurities I had about my body thanks to an incredibly unlikely way: by being diagnosed with a devastating genetic disorder and enduring treatment for many secondary problems.

    When people hear the word "disability" a certain picture comes to mind. Everyone has a stereotypical view of disabled people as a whole, but we are all very different. Some people are born with disabilities, others are injured, and some of us were even as close as one can come to "normal" as possible, up until a diagnosis changed our lives. I am from the latter category.

     Born in the Midwest in the late '80s, I was perfectly healthy. I suffered frequent ear infections & strep throat (what young child doesn't?), and was a bit of a late walker, but I was your average kid. We were broke but that wasn't a huge issue in my life. As I grew, learned to read and watched television, I became aware of what was considered the "perfect" body. By the time I reached middle school, I was incessantly bullied for looking and behaving outside of the norm. I was called ugly, fat, and pretty much every other insult in the book. Things only got worse as I got older. Then, just after my 16th birthday, my world stopped.

     I was at an appointment with an Orthopaedist, and while waiting I began absentmindedly playing with my hands. My favourite fiddly trick was to pull my thumb down to touch my forearm. When the doctor finally came in, he saw me playing with my hands, and asked me to do the thumb trick again. He told my mother that she should take me to a geneticist, as he suspected I had something more going on. That's how I came to the day the world stopped turning. 

     As I sat with my mum in the geneticist's office, she told me that she would need to have me do a few tasks. She ran me through the Beighton Score, as part of the larger Brighton Criteria. I scored a 9/9, indicating that my joints were incredibly hypermobile. At the end of my appointment, I was given the news: I had a condition called Ehlers-Danlos Syndrome, Hypermobility Type (a.k.a. Type 3). It was genetic, and I likely inherited it from my mother. When we got home, we both researched the condition. Only then did I understand how the diagnosis would impact my life. It opened a huge can of worms. For years I would see doctors, GPs, and Specialists on a nearly bi-weekly basis.

     EDS was not my only diagnosis. I had many other medical problems that had been overlooked or ignored, and some of them were severe. That December, I had my first major surgery, a mandibular advancement, to correct a short lower jaw. While the surgery itself was uneventful, the post-op was a horrible, life threatening mess. I had a terrible reaction to the anaesthetic, resulting in the frantic paging of my doctor and anaesthesiologist over the intercom, and my mother being brought to my bedside in recovery. 

     After they managed to get me stabilized, I was transferred to a room for my overnight stay. I hoped that would be the only issue, but it was not long after that I realised I was unable to pee, a complication known as postoperative urinary retention. This required the placement of a foley catheter, a procedure that requires you to spread your legs while betadine is used to cleanse the area before a thin plastic tube is inserted into the urethra and up into the bladder. Being a teenager, I was self-concious about having to do such a thing. Strangers looking at your vagina is something very few, if any, teenage girls would be comfortable with. 

     I had four more major surgeries after that, with postoperative urinary retention every time. Two of those surgeries had me in the hospital for nearly a week each, which led to more awkward and uncomfortable body moments. Catheter checks, bedside commodes, and a shower with a nurse present were some of the more memorable. Little did I know that the embarrassment I was suffering then would lead to an overhaul of my self image. When you have doctors, med students, and nurses checking on you every hour for 5 days, you get used to it.

     After those 4 major surgeries, as well as countless other exams and echocardiograms, I found that I no longer hesitated or felt embarrassed by doctors and nurses examining me. I realised that I had become comfortable in my own skin. I no longer looked at models in magazines as the ideal. Sure, I had cellulite, stretch marks, scars, and fat, but those didn't matter anymore. I was just happy to be breathing, living. My life has changed considerably since my diagnosis, as I am now disabled and find it hard to function on a daily basis, but I'm still alive. It's no longer a crisis that I'm a little chubby. I have embraced every inch of my body as a part of who I am, and that there are far more important things in life than being skinny. 

     So there you have it, ladies and gentlemen. The media will try to tell you that you have to be skinny and flawless to be beautiful, but you're already beautiful because you are alive, and life is beautiful. We all have flaws, from the regular folk to the celebrities, no one is perfect, regardless of what the media tries to tell you. So go makeup free, wear a bikini, wear your scars like badges of honour from the battle that is life. Whether you're skinny, fat, or in between, you are gorgeous as long as you are living your life, and no one can take that from you. Step outside your body image comfort zone, breathe deep, look in that mirror, and tell yourself you are one of a kind, and that there will never be another you, and that you're happy in your skin because of it! 

     Share the body positivity, complement someone who looks like they're having a rough day. Help the younger crowd by teaching or showing them that the media alters reality to show you what they think women should look like, the ideal body. There is no such thing, because we are all unique! Oh, and just in case you think you're unattractive, just remember: we all have different tastes in regards to body type, and so-called "fat" and "ugly" people are just as likely to find someone who loves them just the way they are, and more so if you've got self confidence! 

Keep your heads held high, you're beautiful! 

Product Review: Gillette Venus Embrace Sensitive

To all my zebras out there, listen up! 

I was recently sent a new razor by Gillette to test out*. The Gillette Venus Embrace Sensitive is targeted towards those of us who have delicate, easily irritated skin. Here's what the product page has to say about this razor:

"The perfect match for sensitive skin, experience a closer shave and less irritation* with 5 curve-hugging blades and 8 times more glide boosters. Discover why Venus is the #1 razor brand used by dermatologists.

• Protective Ribbon of Moisture with 8 times more glide boosters and a touch of aloe for glide*
• 5-blades spaced closer together for a close shave and reduced pressure per blade**
• Dermatologist tested for sensitive skin
• Easy-to-change cartridge

*vs. Venus original 3-blade razor"

Now, I could just tell you it's a good razor and leave it at that, but I'm not going to. I promised in receiving this product that I would review it truthfully. The truth? I LOVE this razor.

I took it straight out of the package and into the tub. The moisture ribbon is unscented, and it definitely does its job. All I had to do was dip it in the water and go, no shaving cream required. I got an incredibly close shave, my skin was soft, and I didn't end up with any nicks, bumps, or razor burn. If you have sensitive skin and have had bad experiences with disposable razors in the past, I urge you to give this one a try.


*This product was sent to me by Influenster for my honest review. 

What's Up?

So I figured I'd post a little update for now until I can get some real content added. Recently I've been just overall run down, so not feeling too great. So here's some stuff that is going on in my life:

-I have to make an appointment for yet another sleep study
-I was once again denied SSI
-I've been tired constantly
-I adopted a second dog

and last but not least, some big news! In the coming months, I will be moving. Literally dropping everything and starting over in not only a new city, but a whole new state. I will be moving across the country to the East Coast, leaving all of my friends and family behind. I will be moving into a house with a friend of mine. She and her boyfriend will literally be the only people I know there. It's a big deal, this is the first time in my life I will be somewhere where I can't just drive to my parents' house if I need to. My family has also told me that if this falls through, I am entirely on my own, and they will not be helping me. There has been a lot of fighting and love lost between my mother and I recently. It truly feels like she doesn't love me like she loves my siblings, and that my being disabled is a burden to her. She's actually told me to do things around the house she knows I can't do, and that I'm not doing enough, when physically I can't! She should know better than anyone, but instead she's just as bad as the people who tell me I shouldn't park in handicapped spaces because I don't look disabled. It hurts. I've told my family that I will not be returning, or visiting. If they are going to treat me like I don't belong, then I'm done with them. I look forward to taking my dogs, my cats, and my things and moving forward with my life. I deserve to be happy, so I'm making a change. I will update again soon with a few interesting topics, including a post about my new corset!

Until then,
-Jess

Another day, another diagnosis.

Over the last few months, I've had an amalgam of odd symptoms I've been trying to ignore. Bad idea, I know, but I really did not want to go back to the doctor. On top of everything, I had been helping a friend after the death of his parter, and that meant a lot of watching his two gorgeous little girls while he went to work. I went from doing almost nothing, to taking care of a two year old and a 6 month old for up to 8 1/2 hours a day. Though I did things in a modified way to make it easier on me, it still was exhausting, but so worth it. Those little girls made me feel like for once I had a purpose in life, it was awesome. I've never been big on kids, I'm not fond of them at all, but these girls changed all that. When the two year old would come curl up on the couch to watch Netflix with me, or the baby would fall asleep in my arms, it was a feeling like none other, and I'm glad I could help out when it was needed most. I refused to accept anything in return for watching them, because friends help out when they're needed.

Anyways, to get to the point, I started feeling extremely run down. I thought it was just due to not being used to that kind of activity level. Then my side pain started flaring up again, so I decided to go in to see my doctor. After explaining my symptoms and an exam, things got a bit dramatic. Turns out that my radial pulse was registering as much slower than my actual pulse. I had my pulse measured both ways, three times. After that I got to have the following:

-EKG
-5 tubes of blood drawn
-A Holter monitor for 24 hours

I came back after the 24 hours to have the monitor taken off. Then last Friday I went back to go over test results.
-Low hemoglobin and hematocrit
-High Lymphocytes and ESR
Everything else was normal. So off to the lab for another blood draw, this time to do a peripheral smear.
Those results came with the fun diagnosis of normocytic anemia, which normally occurs in people 85 and over. Yay, my life.

So now I get to go back in to have more blood drawn (vampires, I tell ya!) to check my iron levels. I'm just so exhausted, no energy at all! I want to find out what's up so it can start being treated, I hate being this tired.

In other news, I'm trying to find a way to be able to see One Direction on Thursday. I have a major love of boybands, and it's my goal to see all of my favourites. So far I've seen The Wanted and Big Time Rush, but have yet to see One Direction or Union J. A lot of my friends make fun of me for my boyband love, but I've been into music basically since I was born. I was practically raised by musicians. I just happen to have a soft spot for singers, because up until a post-tonsillectomy infection in middle school, I sang all the time. I did choir concerts, solos, and performed with a singing group. I love voice as an instrument, hence my love of boybands. One Direction is one of my favourites, I watched the X Factor UK season 7, which is where 1D were formed, and I loved the boys' individual auditions (Liam's was especially gripping), as well as their first performance as a group. They've come so far, and I'd love to see them up close. I'd kill to meet them. We'll see if I can even manage to find someone with a ticket that is a. floor, so I don't have a ton of steps to climb, and b. willing to give me a deal, because I am so broke I actually have a negative income.

Anyways, I hope my fellow zebras are doing well, and I hope to actually manage to get back to regular blogging soon!
-Jess

Check out the giveaway I'm holding on my nail polish blog!

So I have another blog where I review indie nail polish, and I am currently hosting a giveaway. So if you're like me and you love doing your nails, click the picture to be taken to the blog where you can enter for your chance to win. Share this giveaway with friends and family, I want to see this spread far and wide!

Review: OnePiece jumpsuits, the must-have article of clothing!

Some of you may have seen the OnePiece jumpsuits before. They are quite popular with celebrities. I learned about them myself from the celebrity gossip blog I read. When I saw them, I knew I wanted to get one, and I knew that I needed to share the information with my fellow zebras.

The OnePiece was created in Norway, and is basically the love child of a hoodie and a pair of sweatpants. Roomy, with a zipper that goes from the crotch to the top of the hood, so you can cover yourself completely if you'd like. If you're like me and live in a climate that is three parts winter to one part sweltering hot, you'll see the appeal. If you're also a zebra with joint pain, you can also understand the wonder of this garment.

I sent the company a blog sponsorship request, and told them why I have this blog, what EDS is, and what it's about. I was denied, but they offered to send me one as a gift, as the lovely digital marketing director admired my story and courage. I was touched, it was a very sweet gesture. I was given four choices, all the same design but different colours. I chose this one, and it was sent out to me soon after.

When it got here, I was so excited, I put it on right away. It was comfortable, made of lightweight 100% cotton. There were two zipper pulls, fabric, and large enough that anyone could pull them. The zipper is two-way, so you can pull one slide up, and then unzip that by pulling the second slide up after it. The jumpsuit also has two huge zippered pockets. I can fit several pill bottles, large and small, in each, which is useful if you have meds that need carting around like I do. Overall the jumpsuit is nice and cozy. You can wear it over clothing or with nothing but your skivvies underneath.

My favourite thing about the jumpsuit is that it's basically made for ease of use. Large zipper pulls, baggy, roomy pockets. It kept my achy joints warm and less achy with as cold as it's been here. Honestly, if you're looking for something comfortable to lounge around the house in, this is it! To wash, zip it up, throw it in the wash under a delicate or hand-wash cycle, then hang to dry. Or just wash according to the instructions.

I happened to get a second OnePiece jumpsuit, a Christmas gift from my family that was a pre-order and didn't get here until April 1st, but it's snowy again, so it's been useful as well! This one is from the Hands By One Direction collection. Yep, at 24, I'm a 1D fan! Anyways, a huge thanks to OnePiece for the gift, I absolutely love it and will be living in it as much as possible!