First Post of 2015

Welcome to my first blog post of 2015!

Not much has changed since I last posted. I lost my cats over the winter. One was found living in someone's yard in a city 20 miles away and returned thanks to AKC Reunite's microchip. The other, my Princess, is still missing. We think someone took both cats (they're quite friendly & live outdoors) and then for whatever reason, dumped one or both. Thankfully Annabelle was hand raised by me since she was 3 weeks old, so she's a people cat. They managed to catch her and a local shelter scanned her, found the chip, and then the wonderful people at AKC Reunite gave me a call and told me where to find her. We're currently working on moving her into the house, but with 3 dogs, plus trying to suddenly make an outdoor cat stay inside, it isn't going well.

I'm still trying to get things ready to move. It's easier said than done. I have to go through all of my family's boxes full of crap in the basement to see what stays and what goes. I also have to get my 3 dogs & cat medically up to snuff, which means I'll likely be posting a fundraiser soon. One dog is going on 12 with terrible teeth, arthritis, and various other issues (he came to me that way). Mika, my Chihuahua, still needs her bad knees fixed. All the dogs need shots & heartworm/flea/tick preventatives, and the cat needs the same as well as deworming. It's going to be a process, for sure. 

I decided to switch up my look a little. I've never been blond for more than 10 minutes (between dyeing my hair blue & going from blue to orange back in middle school) but I decided to give it a go. It's been almost a month and I'm really liking the change. I'm also trying to secure a membership to a good gym to try and strengthen my muscles and lose a bit of weight. I'm also hoping that my family can pay for my new glasses soon, being blind isn't exactly pleasant!

The weather here is finally getting nice, which means I have a bit more energy to do things, and I've already taken a few walks on the trails by my house. 

I'm really hoping 2015 is just as awesome, if not more, than 2014 was! 

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! 

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!

Long overdue! So, what's in store for 2013?

Hey guys!

I hope you all had an amazing holiday season! I ended up dealing with a few health hiccups over the holidays, here's an overview:
Dec. 23rd - Found a lump in my right breast. We have a huge family history of breast cancer. I panic.
Dec. 24th - Went to my GP, she said she didn't think it was cancer, but one of the symptoms other than the lump, raised a red flag. She said I could possibly have a brain tumor. Scheduling person was out of office, had to wait until the 26th to schedule an MRI and a breast ultrasound.

The ultrasound came back clean, no cancer. The MRI, on the other hand, showed a "fullness" in my pituitary. I have to see an endocrinologist, because I probably have a microadenoma. Lovely.

Fast forward to 10 days ago. I was walking down the stairs to go outside and get the mail, when Codi, my mum's Dachshund, got underfoot. I managed to miss the last two steps and land full weight on my left foot, and my ankle rolled. I felt things snap. My ankle immediately began to swell and I was in terrible pain. I called my stepdad to take me to hospital, but he was busy picking up my siblings, so I had to drive myself! At the ED, I was seen by a doc who thinks I'm a drug seeker. They only gave me Percocet and Vistaril, which barely took the edge off. After x-rays, a questionable visual exam, and medication, they discharged me with nothing more than a bag of ice.

I spent the weekend in agony, walking on my horribly mangled foot/ankle. On Monday morning I saw my GP and told her of my miserable hospital treatment, and she pulled up the records from my ED trip. Turns out I was supposed to be discharged in a splint and on crutches! I agreed to the splint, but since I'd been walking on it, I said to hell with the crutches. Over the rest of the week, the bruising began to fade, but the swelling persisted. Finally, this morning my mum called every orthopaedist she could find, to try and get someone to see me. She found one, and I went to my appointment right after she picked up my x-rays from the hospital. Turns out that the splint my GP had given me was insufficient in stabilizing my ankle. I am now stuck in a fancy Aircast until they tell me I can take it off. Joy. I will post an update soon with pictures of the evolution of my ankle, from right after the injury to whatever day I post.

As for why I was MIA for almost 8 months: 
Basically, I was used by a money grubbing idiot to scam an insurance company.
I got into a car accident in July of 2010. Some woman tried to beat a red light, I happened to be making a left turn, cars collided. About a year and a half later, someone shows up at our door and serves my mum and I a summons. The woman who hit me was suing us for $75,000. Because of this, I had to make my Facebook private, keep my Twitter posts vague, and shut down my blog. It sucked, I wanted to vent about this horrible woman and what she was doing to me and my family, but I had to keep quiet. She claimed she was disabled now, was owed emotional damages and back pay, etc. When we asked for her medical records, it showed she had a TON of pre-existing conditions. She had ignored the doctor's suggestion of PT and went to a chiropractor instead. She was on hardcore narcotics, like Fentanyl and Suboxone PRIOR to the accident! I was livid, she was making up lies! My theory is that she saw the new car (a gift for graduating high school from my parents) and that I was young (22 at the time of the accident) and saw easy money.

In November, the woman agreed to settle. She got $12,500. The law failed me. As for her inability to work and permanent disability? She now works in a coffee shop, which requires standing all day, and she attended/worked the 2012 Renaissance Festival. Basically, she flat out lied...And they paid her for it. Honestly, I'm just glad it's over. I want to forget.

New things in store for Falling Apart At The Seams this year:

• Product reviews! I'm going to try to find companies with useful products for those of us with limitations.
•  Giveaways! I'll be trying to get companies to donate products for me to give away. All will be geared towards disability, comfort, and assistance items.

So, in the famous words of Porky Pig; "Th-Th-Th- That's All Folks!"

-Jess

Help Me Afford A Wheelchair!

I found out that insurance will not cover a wheelchair for me, just because I won't be using it 24/7! I can move around my house, with some difficulty, and walk short distances, but I can't stand for long periods of time or walk longer than a block or two. So I started a fundraiser. Please, please, PLEASE share this with as many people as you can. Post it on your blog, Facebook, Twitter, wherever. I need this to reach as many people as possible, so I can make my goal. Any leftover money after I purchase the wheelchair will go to medical bills and assisted devices.



Thanks guys!

Long Time No See.

Let's just say my new year has been... rough.

Both of my dogs had procedures under anesthesia on Jan. 25th.
On Valentine's Day, I had to make the heartbreaking decision to put Oscar to sleep.
I have been to Mayo multiple times, and my body has just not been my friend.

That's not everything, but I don't feel like diving too deep right now.

I will be posting again soon, I promise!

Employed?

I may have just acquired the most bizarre, yet amazing job ever. Will be going tomorrow to register as a business, just so I can get access to certain things for now. Probably going to have to put my product review blog idea on the back burner and start a second blog about my work.

It's nothing you'll ever expect.

Be prepared.

Happy Birthday To Me

I have officially survived 23 years.

Super Thankful Thanksgiving, Family Friends Lose Everything In Thanksgiving Eve House Fire

On the eve of Thanksgiving, some family friends were at home when a smoke alarm went off. They managed to call 911 and get out, however their dogs were trapped inside. The house burnt to the ground.

Video of the fire.

Photos of the fire.

This morning, they were sifting through the rubble when they found both dogs, alive, in the basement! However, everything else in the house was lost. The family has three kids, all still in school. Here's a link on how you can help, including a number you can call if you'd like to make a monetary donation:

Help the Haslett-Marroquin family.

Pass their story along to as many people as you can!
Thanks!

Help Me Win Some Toys For My Pups!

I entered Mika in a contest to win $200 in toys and gift cards, because we could really use it. If you feel like helping, here's how:

1. Follow the link: http://www.facebook.com/dogster?sk=app_285858081435238&app_data=1926
2. Allow the app
3. Repost the following on your blog & facebook:

Help Mika win a stash of bones in the Dogster/Doggyloot.com contest! All you have to do is follow the link, allow the app, and vote on Mika's picture, titled "Pizzletastic!", then pass this note on to your Blog & Facebook friends if you'd like! Thanks so much!
http://www.facebook.com/dogster?sk=app_285858081435238&app_da ta=1926

-----------------------

We'd really appreciate the help, she's currently in 11th place!

The House of Broken Bones + Update

That's what it's been around here recently, and it has me fearing for my bones!

On Tuesday my little brother and some of his friends built a catapult at school and were launching gourds. My little brother happened to be looking at the launcher when someone jumped on it, launching a gourd into his face. After some discussion, my mom and sister stayed home while my dad and I went to the ER with my brother. After pushing for an xray, it showed my brother's nose was broken. He's probably going to have an appointment with the ENT soon.

Meanwhile, my mom has had back problems for years. She finally made an appointment with a spine specialist and had her appointment today. Turns out she's had a broken back for years. She'll need surgery soon. So obviously I'm a little worried about who's next!

As for me, I took a pole dancing class yesterday and I have pole burn, bruises, and so many pulled muscles today.

Poll For EDS, Chronic Pain, Arthritis, And Fibromyalgia Sufferers! Please Pass It Along, The More Opinions, The Better!

I am thinking about starting a second blog to review and suggest helpful products for EDS/Arthritis/Fibro/Chronic Pain, but before I take the plunge, I'd like your opinions. If you could please take the survey below, and then pass it on to anyone you know who suffers from chronic pain and ask if they could take it, that would be awesome! It's only a few questions and should take only a few seconds to complete.

Create your free online surveys with SurveyMonkey, the world's leading questionnaire tool.

Thanks so much, and I hope to give back!