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.

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!

Chasing Ghosts

I have spent the past three days chasing ghosts.
On Tuesday I went in to the doctor, because the pain in my feet was getting really bad, and the bruising and swelling was freaking me out. The original options for diagnosis were: swelling related to my old surgery sites or vascular insufficiency. The doc took xrays just in case.

Later that day I get an alarmed call from the doc saying the radiologist found stress fractures in my feet. Their scheduler was out of office for the day, so I had to wait until Wednesday to call back and schedule an MRI.

I had the MRI yesterday, and today the results came in. Turns out the original radiologist confused my old surgical sites for fractures on the films. MRI cleared that up and also pointed out the reason for the pain/bruising/swelling. Turns out I have a really severe case of tendinitis/tendinosis.

Just my luck.

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.

Scary Morning Weather!

This morning I let my dogs back in, it had been overcast since yesterday. Less than 10 minutes later, it became extremely dark outside. Seconds later it began pouring like I haven't seen in years, literally like a giant tank overturned above our house. Then, the sound. I looked outside to see this:

Hail!
I cringed as I thought would've happened if my dogs would've been outside, a mini Dachshund and a Chihuahua vs. dime to quarter sized hail. Luck was on their side today.

Welcome to the family, Mika!

After three years of nagging, I was finally allowed to get another dog. Oscar is frequently bored and lonely, and could definitely use a companion, and my siblings wanted another dog, too.

After being rejected by one rescue over false info they refused to clarify, we finally found a good fit with a dog from Midwest Animal Rescue and Services!

So here she is!

Name: Mika
Breed: Chihuahua
Age: 11 months (we're putting her birthday at October 31st, 2010)
Weight: 9 pounds!
Color: Fawn with a couple dark patches on her tail and bum, and white toe socks

She is amazingly cute, you can learn more about her here:

#1 dog site for dogs & bipeds!

Also, I don't really have the cash to get her any cute outfits, and she's going to need them, as it's starting to get cold around here. So if you have any doggie outfits in size Medium, or other accessories that you no longer want/need, send me an email at jelsen@hotmail.com, because they'd be of great use to us!

I leave you with a video of Mika playing with a toad

STOLEN! Update

So, we gave up on the recovery of my original games. They are long gone. However, my parents have been kind enough to replace the games I lost. Now I just have to get the items and Pokemon I lost back. I will post the list again, and if you're willing to trade or can help in any way, please contact jelsen@hotmail.com

Thanks for the help and support!

Pokemon:
Celebi
Shiny Suicune (from B/W gamestop event)
Shiny Raikou (from B/W gamestop event)
Shiny Entei (from B/W gamestop event)
Spiky Pichu
Pikachu Colored Pichu
Shaymin
Arceus
Deoxys
Mew
Phione
Manaphy
Darkrai
Victini
Zoura
Zoroark

Items:
Oak's Letter
Liberty Pass
Member Card
Secret Key
Enigma Stone

STOLEN! FAQ

First off, to those of you sent here via Twitter, either from Neil Gaiman's feed or someone else's, welcome!

Now, I've gotten some questions about my previous post, and I will answer the most common ones here.


Q: Why didn't you file a police report?
A: First off, I didn't discover that my games had been stolen until several weeks later, as I had decided I was going to take a break from playing my DS for a while. Second, we are under Sheriff's department jurisdiction, and they're not so nice about small thefts like this, unfortunately.

Q: Why not just use an emulator?
A: Because I like having physical copies of the game. My DS is portable, easier to use, and made for these games. I don't want to have to use a computer to play it.

Q: Why not just buy new copies of the games and use Action Replay to get your stuff back?
A: I don't really have the cash to buy $150+ worth of games again, and using Action Replay is not only cheating, it can also damage the games, as it is not a liscenced Nintendo product. I got the games originally for the challenge and fun of working towards the goals in them, I'm not going to cheat just to catch up.


If you have any other questions, feel free to email me at: jelsen@hotmail.com

STOLEN! A Disturbing Trend Hits The Disabled Community.

It started with a story.

Specifically, this story about a disabled McDonalds employee who was duped, and had $5000 worth of his Superman collection stolen. In a follow-up piece today, it was reported that comic fans all over the world were outraged, and had taken it upon themselves to collect rare pieces and autographs to give to Mike Meyer to boost his collection once more, what a sweet thing!

But it also reminded me of a theft that happened to myself at the beginning of the summer.

Now, i'm sure many of you have heard of Pokemon, an extremely popular game from Japan. They have cards, video games, cartoons, and collectables. From the time they came to the US, I have loved the Pokemon games from Nintendo. Your goal is to collect and train Pokemon, eventually hoping to collect them all. I have been playing my games for years, working hard to catch and trade pokemon, and attending events to get pokemon you can't find in the game. I play these games as relaxation when i'm having bad pain days, I've played them in the hospital and in bed after surgeries. I have put about 4-5 years and hundreds of hours of effort into these games.

This summer, they were all stolen from me.

The probable culprit? A well regarded nanny my parents had hired to watch my siblings. Though she came with great references, because I was home during the day, I could see how she treated my siblings. She called them brats, told them to shut up. She ate all of our food and then complained there was nothing to feed the kids, when we had two fridges and four freezers that were full. She gave my mom a list of food she wanted her to get for lunches, nothing but chicken nuggets, pizza, and juice boxes. She would take my siblings to the river and then sit on the other side of the path, reading a book, not even able to see the children. After telling my mom this, and she discovering things around the house that had been destroyed, the nanny was fired after less than a month.

Unfortunately, the theft of my games was not discovered for another few weeks. Why? Because after she'd stolen my games, some of which were gifts while I was in the hospital, by the way, she put my game case back in the exact position it had been it. As I had decided to take a break from my DS for a while, I didn't immediately notice.

So what all did she take?
6 games; Pokemon Pearl, Pokemon Platinum, Pokemon SoulSilver, Pokemon Black, Pokemon Ranger and Pokemon Ranger: Shadows of Almia
4-5 years of work
Hundreds of hours of my time
Event-only pokemon, that you can no longer get, including:
Celebi
Shiny Suicune
Shiny Raikou
Shiny Entei
Spiky Pichu
Pikachu Colored Pichu
Shaymin
Arceus
Deoxys
Mew
Phione
Manaphy
Darkrai
Victini
Zoura
Zoroark

And the rare items Oak's Letter, Liberty Pass, Member Card, Secret Key, and made me miss out on the Enigma Stone.

I went to the local GameStop to see if she'd sold them, but the told me they couldn't let me see the games without a police report, store policy. I would later learn this was a lie.

I was and still am devastated by this. As someone who has trouble doing many things, these were what I was good at. Several of those games were gifts, some I'd purchased myself, but they all had meaning, and I will probably never see them again. It hurts to already have a disability, and then have someone take advantage of you because of it.

Unfortunately, there are people willing to take advantage of the less fortunate among us all the time, so beware!

EDITED TO ADD: If you have any questions, feel free to email me at: jelsen@hotmail.com

The Chair

Today the wheelchair guy came to my house to talk chairs, options, and so on. I decided a TiLite is going to be best for me, and after going over my conditions, so did wheelchair guy. We talked conditions, what I'd need to get my pre-auth, and chair options. He took measurements of me and our doorways.

Honestly, the thought of being in a wheelchair freaks me out, but I sort have come to terms with it.
We'll see.