A couple of weeks ago, we got a letter from Ben’s insurance, saying they’ve approved the pre-authorization request for the genetic testing to find out if he’s a carrier for LGMD.

The prescription for the blood work showed up about a week later. At that point, it hit me that this is really happening. We’re really this close to having all the answers that current medical research can provide.

The euphoric feeling was short-lived for me; replaced quickly by an all-too familiar feeling of panic.

What if this is the wrong test? What if the results are positive and we can’t have kids of our own without passing the disease? What if the results are negative and it passes anyway?

The latter questions that keep plaguing my mind are honestly easy to answer: if we know it would pass to any offspring, we start the process for adoption. If it shouldn’t, but ends up passing anyway, we love them and are thankful for our blessings. I know the ups and downs this disease entails, so if nothing else, I can at least prepare them for it.

I couldn’t stop feeling like there was something missing from the prescription. This fear came mostly from the summary information from my Bethesda trip, which of course I. Couldn’t. Find. For. The. Life. Of. Me. to re-read and quell the craziness brewing in my head.

I have crappy luck with insurance: my paranoia was that we’d learn AFTER the blood work was done that the testing was wrong and we needed something else, and then Ben’s insurance would essentially say “screw you, we just paid for expensive testing, you’re not getting anything else”.

Like I said: the crazy was brewing.

So for the past two days, I’ve been playing phone tag with members of the genetics team from Bethesda. Who, I must say, are some of the nicest people in the entire world. They even went so far as to reassure me that I’m not crazy (yeah right). I would seriously contemplate moving states if it meant they would be my doctors for everything health-related.

After talking me down from my proverbial baby-makin’ ledge, I found out that yes, the prescription covers everything we need to make an informed decision on the likelihood of the disease passing. [insert very large sigh of relief here]

Ben and I will be heading up to the hospital at the end of next week, since he had to take off of work to meet the time requirements of shipping the tubes of blood out to diagnostics. After that, it’s another 6 weeks wait, and then we’ll have our final answers.

Holy crap. We’re really that close. 

We’re Really that Close is a post from: Crippled Girl

If you haven’t seen the button on my sidebar or some of my recent tweets, this August I’ll be heading to a very awesome blogging conference in NYC with my roomie, Jayme.

And with sponsorship figured out (which I will tell you about soon, because they’re awesome!), there’s only one major question left:

What the heck am I going to wear?

Even though I’ve already been joking around on Twitter about showing up in sweats and flip flops, there’s a part of me that can’t imagine being in The Big Apple without looking stylish . . . or at least more fashionable than my day-to-day look is. (Which . . . if I’m being completely honest? That look is mostly sweats and flip flops. I’m a creature of habit, people. Comfortable, lazy, habit. )

Since Ben won’t be coming with me like he did for #BBCPhilly, I’ve got to pack stuff that is not only cute, but comfortable and easy for me to put on and off. This probably means I’ll be wearing a lot of dresses and capris.

My go-to store for dresses is usually Old Navy, and if you’ve ever cringed at my bill before, you’d have no doubt in your mind that I’m speaking the truth. But, I’ve already bought a dress from them online this season and I would really like to branch out and try something outside of my usual comfort zone. I’m looking for a place that is affordable (like, below $50 for a dress. I still need to budget in money to eat that week),  has secure online payment because I don’t want to have to leave the house and actually try stuff on, and, if they’ve got a store card, offers internet payment services would be a definite plus.

And speaking of plus, they should offer a lot of cute options in fat girl sizes. That’s kind of important.

So  readers: Where should I go shopping? Also – if you’re going to the conference, let me know!

Conference Clothes is a post from: Crippled Girl

This past weekend, Ben and I headed to Philly for Bloggy BootCamp and GLO’s cocktail party. I had SUCH an awesome time! (Even if we had a rocky start and a broken bolt on the wheelchair lift.)

There are a lot of great recaps, so if you’re looking for an overview on the  info learned, I suggest checking out these posts:

10 Things I Learned at Bloggy Boot Camp Philly – A Grande Life
10 Takeaways from Bloggy Boot Camp Philadelphia #BBCPhilly  – Look Who Found the Marbles
Bloggy BootCamp Philadelphia  –  The Preppy Girl in Pink
Tips from Bloggy Boot Camp Philadelphia #BBCPhilly  – Girls Lunch Out
Home From Bloggy Boot Camp  – Backwards Life

If you’re a blogger who’s been contemplating on putting the money into a conference, I have one thing to say to you:  DO IT.

If you need more convincing, here’s my list of the top 5 reasons you should attend a conference:

1.) These people are your friends. They want to hang out with you.

One of the best parts about conferences is the camaraderie. And don’t think that no one knows who you are, because you’ll be surprised to find out just how many people will know you from Twitter or Facebook (or from your obvious wheelchair, in my case). Bloggy BootCamp in particular is fantastic because assigned seating forces you to get out of your comfort zone and talk to new people.

2.) Much Needed Vacation

Hlaf the bag was gone before the end of the day

If I had a nickel for every time I heard someone talk about how much they needed this weekend, or how great they slept in the peace and quiet of their hotel room, I would have the funds to cover another conference ticket. Even Ben, who came with me for mobility reasons, enjoyed the stress-free time lounging in the hotel room.

And if a weekend of uninterrupted Xbox play, the free samples from @KingsHawaiian were enough to keep him content.

3.) Face Time with Brands

An overarching themes of #BBCPhilly was acknowledging that emails aren’t always enough. If you really want to land an opportunity with a company, you need to get in front of them, either in person or on the phone.

4.) Cocktail Parties Rock

Photo by: Girls Lunch Out

Photo by: SITS

3.) Educating Yourself is Worth every Penny

in the long run, the biggest reason to buy a conference ticket is because you will learn SO much that your head will be spinning. They remind you to look at your (blogging) world from a different perspective: looking at the whole picture, looking forward, and looking inward.

Are you going to any conferences this year?

5 Reasons to Attend a Blog Conference is a post from: Crippled Girl

Being in a wheelchair means that function always comes before fashion, whether I like it or not. I need clothes that are comfortable and made from fabrics that can handle being stretched and pulled by my little crippled arms.

One of the reasons I am in a perpetual state of credit card debt is because Old Navy always seems to have clothing that fits my needs and lets me cling to whatever little fashion sense I have. Usually my summer go-to style is Old Navy’s jersey cotton dresses, but thanks to CrowdTap, I had the chance to check out their new line of shorts for the upcoming summer season. And since they were kind enough to let a friend try some shorts too, I brought my sister Chelly along too, which lead to this fb post:

There are definitely days when I’m grateful to be older and wiser, and more comfortable in my sense of style than I was as a teenager. But that’s the joys of growing up, right? That being said, I think Chelly tried on every.single.pair. of shorts in the entire store before deciding on one. We tried on jean shorts, cloth shorts, khaki shorts . . . basically, if it was in the store, the girl had to try it on. The purple printed cloth shorts on the left were hands down her favorite:

She was not impressed that I was standing outside the dressing room, snapping photos. Gotta love her facial expressions though!

My choices in shorts are simplified because of the wheelchair. Essentially, longer = better when it comes to shorts, because regular length shorts tend to disappear. A few years ago when Bermudas  came back in style, I was in heaven, and had shorts that didn’t leave me looking like I was half naked. The store had a couple of other longer options that weren’t technically Bermudas, and so I went with a pair of green khaki shorts:

I loved the color and the shorts were cuffed, so if I unroll the bottoms they’re almost as long as Bermudas. Which makes me a super happy camper! I haven’t gotten a chance to wear them yet, because of spending the weekend in Philly for Bloggy BootCamp, so be on the lookout for a post (or on Twitter/Facebook) for an update on how they fit!

What’s your favorite thing to wear in the summer?

Disclaimer: As a member of Old Navy’s Style Council on Crowdtap, I received coupons to try out a free pair of shorts. My opinions are my own and were not affected by compensation. 

Getting ready for summer with Old Navy shorts is a post from: Crippled Girl

Glad somebody’s cleaning around here. I’m certainly not.

Wordless Wednesday: Cleaning is a post from: Crippled Girl

Operation ignore Mother’s Day went pretty well.

So did Operation Retail Therapy, but that’s a post for another day.

Our Godson visited on Saturday so we were able to give him his Easter basket. In return, Dude gave me a finger-painted (God) Mother’s card.

Having my Godson around made my doom-and-gloom about the holiday go away. Then again, trying to teach a toddler how to use a plastic bat that’s bigger than him is enough to make anyone forget their worries for awhile. Mostly because you’re too busy trying to save yourself from getting whacked.

(God) Mother’s Day is a post from: Crippled Girl

Since my three dogs are considered a part of the family, it’s important to me that they get quality nutrition. After all, they’ll eat anything from bugs to dirt to grocery receipts, so I need to do all that I can to make sure there’s actually something decent going in their furry little systems . . .

After hearing a friend talk about how much her dogs loved SmartBones, I was excited for my dogs to try them out as well. Smart Bones are made from chicken, vegetables, and other healthy ingredients, and are  99.2% digestible – more than premium dog food.

The bones are also environmentally friendly and raw-hide free. This was particularly important to me because our black lab/retriever, Cole, has never liked rawhide.

Available nationwide and online, SmartBones come in three styles: Peanut Butter, Chicken, and Dental, which has additional cleaning properties if you’ve got a pup with bad breath.

SmartBones come in four sizes: mini, small, medium, and large. Since we’ve got dogs of all sizes, we were able to see the variety between the sizes, which was nice for future reference when we buy them again. We barely got the SmartBones in the front door before our pups were jumping around excitedly from smelling the peanut butter flavoring.

Having to wait while I took the bones out of the mailing envelope to get a photo of the contents was apparently torture for the dogs. Cheyenne was especially determined to let me know that she was still waiting . . . with as much patience as she had.

Cole especially enjoyed his SmartBone. He was a little skeptical at first, since the bones almost resemble rawhide. As soon as he got a taste, he quickly stole his treat and ran to his safe place in his cage to chomp on it.

As soon as the bones were divided, the dogs scattered around the living room floor and set to work chewing, chewing, chewing. It took all three dogs about 45 minutes of uninterrupted chewing to finish their bones. Considering how fast they eat through everything else, I was impressed the bones lasted as long as they did. They’re definitely something I plan to have on hand when there’s chaos around the house and I need the dogs to stay calm, occupied, and out of the way.

Think your pups would love to try SmartBones too? SmartBones is offering TWO of my readers a bag of SmartBones! Enter using the Rafflecopter widget below:

a Rafflecopter giveaway

SmartBones review & giveaway is a post from: Crippled Girl

Last year, I wrote a post, hoping it would be the last time I was not celebrating Mother’s Day. And here I am, another year later, and still no Momma-status.

It is hard not to feel like a failure. I am reminded that the terrifying downside of setting goals when you have no control over the outcome is that things may not go as you want them to.

In truth, I’ve done my best to ignore the holiday entirely, which has kept Ben in a perpetual state of confusion. Why exactly don’t I want to discuss what kind of flowers to send to your mother? When I started tearing up at a random commercial about gifts for mom, Ben figured out what was going on inside my head. And I admitted, that this year it would be easier if the holiday just dissappeared in my little world.

The impending holiday reminds me, again, of how far we have to go, how much more I could be (and need to be) doing to control my blood sugar, how much weight I haven’t been losing. All around, it makes me want to swan dive into a gallon of cookie dough ice cream . . .  As far as I’m concerned, the weekend will be about TLC, prepping for BBC Philly, and de-stressing. And possibly avoiding visual contact with any pregnant women and newborns.

But I’m trying to stay hopeful. Because while this Mother’s Day hurts like hell for me, maybe next year will be better.

Next Year Will Be Better is a post from: Crippled Girl

While I was working on a Domo hat for Michelle, I had a request from my mom’s coworker’s daughter for another animal.

Many thanks again to my sister for being my willing hat model.

I love the way the pattern worked, from an idea tried on a whim. I love how the ears turn, as if they’re alert and listening to everything around them. And even the mane, that took an insane amount of finger-numbing time, tying (what felt like) thousands of individual pieces of yarn on, one by one, I’m pretty fond of.

The hat is hanging out on a college campus, somewhere in the North West part of the country. Some days, I like to think I get to experience the other side of the States vicariously through it. Minus another round of undergrad homework.

Zebra Hat is a post from: Crippled Girl

A friend told me a couple days ago that she moved her blog to a different platform that she felt was easier for her to manage. And even though I understand why she made the move, I tried convincing her to use wordpress.

Because I freakin’ love wordpress.

My awesome graphic skills and nerdy humor, used to convince you that I'm right.

It’s been almost two years since I made the big jump from Blogger to self-hosted WP. And even though I’ve had a few “break it ‘till you make it” moments, I wouldn’t go back for a million bucks.

Okay, that’s a slight exaggeration. But we’ll go with it since I highly doubt anyone’s interested in paying me to switch back. I mean . . . if you are .  . . call me.

Anywho,

There are a lot of posts on the internet about the WP vs. Blogger debate, but in case you’ve been thinking about making the switch, here’s why – in the least technical terms ever – I think you should:

All the cool kids are using it. And by that I mean me.

Google won’t own your soul content Yes, I pay for the right to own my shit. Considering Blogger (one among many of the Google owned sites) blog owners are constantly dealing with blogs being shut down from TOS violations and Spam-preventing robots, I’m happy to keep my domain and hosting fees on auto-renewal.

Post urls accessible before going live While Blogger uses some sort of format with post urls, the only way to really guarantee an accurate url is to hit publish. For anyone who’s ever worked in social media marketing or tried to schedule tweets and other post promotions early, this can be a major pain. So if marketing your site is anywhere on your to-do list, you should consider WP.

Plugins are cool. Most of what (I think) makes WP as great as it is, comes from the wide-variety of plugins that are available. Plugins help your SEO, social media impact, reduce spam, and make your blog pretty.

Ability to make your blog public and private, at the same time. On WP, you can keep adjust privacy settings on individual posts – even requiring a password to access certain material.

It’s really not that different, in the long run, especially if you hire a designer to transfer your content and set you up with a gorgeous design. While this route is considerably more expensive, it does give you the option of just focusing on content.

Do you love WP as much as I do? Tell me why (or why not!)

Why I Love WordPress is a post from: Crippled Girl