Rare Disease Day 2012

Ohai!

It's February 29th... you know what that means right? IT'S RARE DISEASE DAY! That's right, today's the day we raise awareness about our specialness. Today we all rise together, united in our crippled goodness.




In honor of Rare Disease Day I figured I'd share my story and my disability with y'all.

I was born with a genetic disorder called "Multiple Hereditary Exostoses". It causes benign bone tumors to randomly grow on the my bones. I have well over 100 tumors on most of the bones on my body. The only areas that are not effected are my skull and spine. For me, these tumors range in size from a teeny tiny pebble all the way to a baseball. MHE also causes the bones to warp and grow crooked. MHE causes constant pain, restricted movement, chronic fatigue, as well as possible mental side effects. There is no cure for MHE. The only current treatment is to have surgery when tumors become severely problematic. Thanks to my MHE I've had 10 surgeries on my legs, arms, and hip.

I got Reflex Sympathetic Dystrophy due to complications from my first surgery. RSD is a pain disorder that causes severe pain (think 20 on the pain scale), sensitivity to touch and temperature, and my leg turned a lovely shade of purple. My RSD went into remission after around a year of intense and very painful physical therapy. It reappeared nine years later, but quickly went into remission after more aggressive therapy.

My diseases have definitely had an impact on my life, both negatively and positively. I live in constant pain, I can't do a lot of normal activities, and I've missed out on experiences and milestones. BUT living with all of these challenges has turned me into a person with wisdom, strength, and perspective far beyond my years. I do my best to always remain optimistic, regardless of how bleak things may seem , because I know it could always be worse, and because things almost always get better.

So fellow cripples... rise up, be proud, and own your disability. It might suck sometimes, but at least we get a holiday!

Crippie's Tippie- Get more information about Rare Disease Day HERE

P.S- The guinea pigs are getting their baths tomorrow, and I will definitely be taking pictures :D

Crippie Plays Catch Up

Sup Everybody?

My cold is finally starting to go away... YAY! I can breathe again!!! Apart from the general annoyance of the cold, it was really starting to get painful, tumors in my ribs were catching when I coughed, hella painful. Anywhooo today Crippie figured she'd talk about some random things that have been on her mind recently...

- Anybody watch the Oscars? Crippie enjoys watching award shows and picking out the winners regardless of whether or not she knows what she is talking about. I did pretty well last night, got a vast majority of my answers correctly. The biggest bummer of the night... WHY DIDN'T HARRY POTTER WIN ANYTHING? I mean, c'mon couldn't the academy at least recognize them for their make-up? Biggest moment of awesome (for me anyway)... when "The Descendants" won an award for it's script. Why? Because this means the academy agrees with Crippie in how the movie is not offensive in any way, shape or form. Snaps for validating my opinions. 

- Now that my cold is going away I can focus on trying to sleep again. Last night I fell asleep around 5:30am. The night before that it was 4:00. Crippie really needs to think of some sleeping techniques. Oh, and for those who suggested either Tylenol or Advil PM... Crippie used to take those to go sleep for several years. What happens when you take a drug regularly for several years? You basically become immune to it. Alas they no longer have any effect on me. 

- Crippie visits her pain management doctor on Thursday. My mom really wants me to consider the anti-depressant as a pain medication route again. This time we are gonna go to the doctor specifically discussing my hip pain (normally I just say I'm in pain from the neck down). I'm gonna bring my hip x-rays and discuss how I want to preserve my hips for as long as possible. Although part of me thinks I should probably be talking with my ortho about that, which reminds me... I haven't had an othro appointment in over a year, YAY ME! 

- The piggies are starting to get dirty, I guess that means it's time to bathe the piggies. Something tells me Thursday will be spent at the doctor's office and then bathing and blow drying pigs (yes, I actually use a hair dryer on the piggies). Anyone interested in seeing pics of that super fun event? 

- Speaking of piggies, here's some pictures of Frida sleeping in Nellie's house. Ever since Frida managed to get in Nellie's house she has refused to come out :D

- So yeah, that's about it. Random jumble of a post. Crippie's thoughts get jumbled at 3:00am... which is mainly why I NEED TO FRIGGIN SLEEEEEEEEEP!

Crippie's Tippie's - In this day of digital x-rays its super easy to ask for a copy, they can be emailed to you too! 

Crippie Rolls Down Memory Lane

Hey Y'all!

I'm soooooooooooo sorry that I've been MIA for the past few days. When I jinx myself and get sick I realllllllllllllyyyyyyyy jinx myself and sick. Yeahhh, Crippie has a massive head cold. On the bright side, it inadvertently gave me an idea for a blog post. Yay for massive head colds!
Crippie was trying to distract herself from the whole "my nose sounds like a trumpet" thing by browsing Pinterest and I came across a dandy little image. It's Becky, Barbie's cripple friend!

Crippie was so excited when she this Becky doll. Why? Well, Becky was manufactured in 1998, when Crippie was 10 years old. Crippie totally had this Becky doll, and I have very fond memories of having a cripple barbie. At that point in my life I didn't know anyone with a disability, so at times it was hard to cope with the fact that I was "different". Having a toy with a totally kick ass red wheelchair with holographic wheels helped me feel that I was not alone and that is was ok to be disabled. Alas, the Mattel company stopped producing Becky dolls a year or so after their release after people complained that Becky could not fit into any of Barbie's dollhouses. While I can understand how people would be pissed that their doll couldn't be used with a lot of Barbie's accessories, at that age I was just happy she existed. I would love to see the Mattel company just make a wheelchair that could be used for any Barbie. That way any girl could make any Barbie be more like them.

Becky was not my only crippled doll. Crippie also has a crippled American Girl Doll. Around the time that Becky was released (me thinks a year or two before but I'm not sure) The American Girl company made a wheelchair for their dolls. Naturally Crippie had (still has) an American Girl doll in a wheelchair. I absolutely loved how she had a totally kick ass blue wheelchair. There are two really awesome details about the American Girl wheelchair... 1) it was rather well made, mine is still intact as the picture shows, 2) THEY STILL MAKE 'EM. An updated version of my doll's wheelchair can be obtained HERE. As far as toy companies go... I've found that they are one of the more "cripple friendly" companies. Their current "girl of the year" doll has a learning disability and befriends a girl in a wheelchair.
At that age, my dolls were sorta like my friends, and to have friends that were going through the same things I was  definitely helped me cope with my illness. I do wish more toy companies were "cripple friendly". They really are rare and few in between. The only other "cripple friendly" toy company I can think of off the top of my head is the "Monster High" series, especially their zombie character who walks slower and occasionally will lose a limb. What about you guys? Do you know of any toys designed for disabled children?

Crippie's Tippie For Toy Companies - MAKE TOYS FOR CRIPPLES

Crippie Tries To Go To Sleep

Ohai!

Hope y'all had a lovely Tuesday. Apart from slowly coughing my lungs out my day went pretty well. I was kinda surprised by how not sucky today was considering it took me well over 5 hours to go to sleep last night.
It's weird, you think it would be easy for a person with chronic fatigue to fall asleep... but alas that does not appear to be the case with me. It's pretty easy for me to take a nap, I fall asleep within 20 minutes and I'm not in too much pain. BUT as soon as Crippie tries to go to sleep for the night either her hip, shoulder, or something random decides to hurt her. Sure, pain meds help to a degree, but I'm usually in some form of discomfort when I go to sleep. I've had trouble sleeping for as long as I can remember. The only time I don't have trouble sleeping is when I'm recovering from anesthesia (only good part about surgery... drugs and anesthesia make it super easy to sleep).
Recently, after growing ever frustrated with my sleep issues I thought of a novel idea... "Hey Crippie, if you can nap without issue, why don't you treat bedtime like naptime?". So Crippie tried to sleep propped up at a weird angle on her bed watching some random tv channel. Go figure I fell asleep faster than I usually do. I've been trying this for the past several nights and it's been working, with an exception for last night but I was up because I wasn't feeling well... so it doesn't count ;) What about you guys? What do you do to treat insomnia? I would try something like Ambien, but some of my relatives have had some crazzzzyyy side effects from that one (let's just say they involve show tunes).

Crippie's Tippie - Sometimes the best solutions are the weirdest

Crippie Lost The Immunity Challenge

*ACCHHHHHHOOOOOOOOOOOOOOOOO*

Yup *cough*... Crippie is a total jinx. I wrote a blog post about not *cough cough cough* getting sick and what do I do after that... I GET SICK. *Cough* it appears that Crippie has come down with a little cold. So yeahhhh, sorry about the lack of posts people, haven't been feeling well enough to post.

To make up for the lack of posts *cough*... here's some guinea pig pictures.

The Trio, eating hay and looking a wall

Nellie, Cleaning her Feetsies

Frida asking for food

Nellie asking for food/forgiveness for not posting in several days

Crippie's Tippie - Never brag about anything over the interwebz...  *cough* it will come back and bite you in the ass

Hey Good Lookin'

Whuzzup Y'all

I hope y'all had a lovely Thursday. Crippie's day was pretty uneventful. Mother Nature decided to be stupid and change the weather in the middle of the night. It took Crippie 4 hours to go to sleep. Yeah... today was one of those days where I was too achy to do anything of use. Although I am currently "babysitting" Helen while her mommy is still sick. While Helen loves me she is making clear that I am not her mommy. For a blind dog she gives a really convincing death stare.

Now on to Pig-tures! Maggie says "thank you" to everyone who thinks she's pretty. Tonight we are going to focus on her cage mate Aggie. Aggie is a blonde, black, and white shorthair who is a little over 2 years old. She is known as "Good Lookin' Pig" in my house. Her hobbies include eating her feelings, eating jewelry, and eating plastic. When we first obtained Aggie she showed some signs of piggie depression. The depression went away as soon as she realized that we have comfy beds, toys, and most importantly... FOOD. She is our loudest wheeker, I can hear her when I'm listening to music with headphone on... on the other side of the house.

I SMELL FOOOOOOOOOOOOOOOOOOOD

I might be a fat pig, but I'm a cute fat pig! Look at my lovely markings.

See, I'm freaking adorable!

BEAUTY SHOT! Look at them whiskas!

If you thought Maggie was cute... I probably just blew your cute filled mind!

 Crippie's Tippie- Piggie depression can actually be very serious, weigh your sad piggies daily to make sure they are eating.

Crippie Wins The Immunity Challenge!

Happy Belated Valentine's Day Y'all!

I reaaallllllyyyyyy hope all my readers had an awesome Valentine's Day. Crippie spent her day working, eating candy, playing with pigs and puppies, eating candy, hanging out with relatives, and eating candy. If you were wondering Crippie doesn't have a "valentine" per say, but I enjoy the holiday regardless because it's an excuse to eat massive amounts of candy.
Apart from holiday cheer going around there also appears to be a nasty stomach virus spreading around here as well. Pretty much everyone in my house has gotten sick... EXCEPT FOR CRIPPIE! It's weird, even though I am in general a very sickly person my immune system is oddly strong (get the title now?). I rarely have allergies and I might get the sniffles once or twice a year... that's about it. I have absolutely no freakin' idea what I'm doing right besides drinking insane amounts of vitamin C rich beverages whenever someone near me gets sick. *Shrugs* Crippie usually jokingly explains it as "proof that God doesn't totally hate me". Watch, I'm gonna get sick as soon as I press the publish button.

In unrelated guinea pig news, my trio beyond happy with all of their admirers on here. They brag about it all day. The problem is that my duo overheard them and now they want their shot at in the spotlight. I figured I'd give each of them a special day to have all the attention on them. The Piggie de jour is my youngest pig, Maggie Mae. Maggie is a brown Abyssinian Guinea pig and she turned 2 years old a few weeks ago. Her hobbies include trying to escape, listening to Diane Sawyer, being the boss, and standing.

Maggie when she was a baby... she made it on DailySquee!

Maggie is a big girl now

BEAUTY SHOT!

She was trying to eat my button -_-

Ohai, just standin' here... showing off my blonde tummy

Crippie's Tippie - Try not to get sick peoples, consume lots of vitamin c and use hand sanitizer... also if you need to cough, cough into your damn sleeve

SNUGGLY BLANKET OF DOOOOOOOM!

Yo!

Soooo... yeah... about that title....

Crippie had a rather uneventful day today. Work, pigs, puppies, the usual. Absolutely nothing out of the ordinary today. I turned on my laptop and my heated blanket, just as I do every night. I was looking at stupid pictures of cats when all of the sudden I heard a *fizzle* sound. I figured it was a pop-up ad and continued on with my cat pictures. 5 minutes later I hear another *fizzzzzlee craaaaacck*. This time I'm slightly puzzled, but I really don't think much of it cause that's just how I roll. Over the next few minutes I hear more fizzles and craps and finally I realized... HOLY CRAP IT'S MY BLANKET! Crippie swiftly unplugged the blanket and investigated further and sure enough my damn blanket smelled like burning. Thankfully Crippie realized what was going on before any actual fires took place. Believe it or not this is not the only time one of Crippie's processions almost caught fire. My Furby almost blew up when I was 10 and my computer charger had a "mini-fire" a few years back. WHY DO MY THINGS KEEP CATCHING ON FIRE!?!?!

Oh well, it seems that Crippie is now without a heated blanket. Can any of my readers recommend one? Preferably one that won't catch fire.

Crippie's Tippie - Pay attention when you start hearing random fizzles and cracks out of nowhere

The Hunchback of Notre Lame

Bonjour!

I sincerely hope all of my wonderful readers are enjoying their weekends. Thus far mine has been pretty good. I saw a local children's production of "Godspell" that was rather adorable and tomorrow my friend is gonna come over for pizza and a movie.
Speaking of movies, for the past couple of days Crippie has been trying to think of any recent movies that are actually offensive to the disabled community. Crippie could think of plenty of movies that have used the word "Retard" or "Cripple"... but they're all intentionally offensive. It took a while and Crippie had to redefine "recent" but she found one... Disney's 1996 classic "The Hunchback of Notre Dame"! Why is it offensive? Prepare for the Crippie Rant!

<CrippieRant>
Okay, the cripple is considered a monster and is forced to live in a tower, I get it. That's not the problem. Let's think back to every Disney movie that involves a romantic interest, how many of them end up together? Hmmm... oh yeah... EVERYONE EXCEPT THE CRIPPLE! Poor Quasimodo loves Esmerelda but noooooooooooooooo he gets friend-zoned while she falls for the "hunk" Phoebus. It's not like Quasimodo saves Esmerelda's ass on countless occasions or pulls her off a burning stake or anything... oh wait... HE DID. Did him not getting the girl he pulled off a flaming stake help the story or prove a point? Yeah, it sure does prove a point... it doesn't matter how heroic you are... if you are horribly disfigured you will never get the girl! 
While yes, Quasimodo eventualllllllllyyyyyyyy finds love in the horribly contrived sequel, it had nothing to do with the original plot and I think it was their way of saying "fine... the Cripple can get a girl too, she's from a Circus. There. Happy?" The only thing I can say in the movie's defense is that the soundtrack was awesome... almost Broadway like.
</CrippleRant>

So there ya have it folks! That's probably the only recent film that has offended Crippie. What do you guys think? Agree? Disagree? Did you forget that movie even existed?

In unrelated guinea pig news, my prior post on piggie introductions was featured HERE, with a lovely picture of Mama Pig. Mama Pig is beyond flattered.

Crippie's Tippie - Wanna see a good Disney movie that deals with disabilities? Go find Nemo ;)

Piggie Post - Introductions & The Trio

Ohai!

I hope you guys are having a nice wheek. Crippie has been spending a lot of time with her piggies over the past few days. Our new trio is totally in love with their new cage and I think they are starting to bond with each other. If any of you guys have ever had guinea pigs and have had to do an introduction you know how hard they can be. Things can go verrrryyyyy wrong with introductions. Piggies need to sort out their dominance and someone (human or piggie) could get hurt in the process. Here are Crippie's Tippie's for successful Piggie introductions (try saying that three times fast... whew).
1) Know your pigs - Your pigs are gonna fight for dominance, that is a given. If you put two dominant aggressive pigs with each other bad things will happen. Emma and Frida had a nasty spat the one and only time I tried to introduce them. With this recent intro I knew that Frida was dominant, Nellie was recessive, and Mama Pig was neutral. Their personalities made this transition easier.
2) SALAD - Food makes everything better. When we first put Nellie in with Mama and Frida we put a giant plate of lettuce in with them. They cared more about food and less about fighting.
3) GRAB A TOWEL - Have a towel handy in the event that things get nasty. NEVER use your hands to break up a piggie fight. Blood will be shed. Throw the towel on the pig causing the problem.

Our trio's intro went pretty smoothly. After a quick nip in the butt Nellie assumed her recessive role. Even though we got through the first hurtle of the introduction, we had to make sure they continued to tolerate Nellie. The next few days involved a lot of Nellie be chased around the cage, Nellie being scared, Nellie screaming bloody murder, and lots of Nellie crying on my shoulder (literally). Here's what we did to help Nellie adjust to her new buddies...
we gave her extra treats and oodles of extra attention. We also had a hiding place with four walls that only she could fit in, so she had a place to go where she felt safe. Of course Crippie had to put the pig that was chasing her (which was usually Frida) in "time out", which involves putting them on their backs (vulnerable position) and saying BAD FRIDA! I might seem like a crazy guinea pig lady for that but Frida knows when she's being naughty.

Everything simmered down after a few days and Frida stopped chasing Nellie and blocking her in corners. Now everyone sleeps in the same general area, eats together, drinks together, and most importantly no one bites anyone else! Now for pictures! I wanted to add more, but my computer is being stupid and won't let me... I'll probs edit this post once it lets me.

MY BOWL IS EMPTY... FIX IT - Mama Pig

The Blur of Fury that is Frida

Mama Pig is so photogenic... she either tries to eat my camera or pose

Mama Pig in a hay ball

Nellie checking out my camera

Crippie's Tippie - Guinea pigs are not simple pets to raise... cannot stress that enough. 

Back On Track

Greetings!

"Crippie's Corner" is officially a year old! I can't believe how much this blog has blossomed in it's first year. For teh lolz, here's my FIRST POST EVER. I can't believe how much progress and change can occur in a single year, I eagerly await what the next few years have in store for Crippie!
This whole "first birthday/anniversary/thing" has definitely given Crippie a much needed kick in the butt. As some of you might remember, in January I posted a list of resolutions that I want/need to complete. At first I was doing rather well at working on them. I starting learning blog design, I made some designs that will turn into prints and t-shirts (I will share them with y'all once they're ready... I swear), and I was kinda cleaning my room a little. Then all of the sudden Emma got sick. She became my main priority and distracted me from everything else. When she died all my motivation for completing my resolutions went with her. Instead of thinking about design and making progress with my life I thought about Emma's last few hours. I was constantly questioning whether or not I did the right things, if I could've done something different. I still wonder sometimes if there was anything I could have done to help her. Crippie knows that most of this lethargy and doubt are part of the grieving process and I am slowly but surely recovering from her loss, but it's been a rough couple of weeks.
That being said, my blog birthday-thingie has reminded me of everything good that happened within the past year. All of these good things happened because I worked really hard to make them happen. I can't just sit around and play The Sims whenever I have free time (silver lining of this, I have made a lot of progress in my game) I have to spend my time working on my designs, figuring out all blog design, and cleaning my damn room. Stagnation gets you nowhere. While this little break was necessary in order to process all the crap that was happening, it's time to move on.

To lighten to mood of this post, here's Helen pretending to be a muppet

Crippie's Tippie - It's alright to kinda veg out for a while... but recognize when you have to get up and move forward

Crippie Discusses Fidget Toys... In Front of a Camera

Ohai Y'all!

CRIPPIE MADE A VLOG PEOPLES! I'll just let it speak for itself...

Crippie's Tippie - Fidget Toys from Special McSpecial on Vimeo.
So, what do y'all think of Crippie's first attempt at a vlog? Frida is very proud of herself and she wants to be in more movies.

Here are some sites where you can purchase your own fidget toys...
http://www.officeplayground.com/ (FOAMIE BIRD IS HERE)
http://www.colonialmedical.com/catalog/Therapy-p-1-c-493.html (ACTUAL PT STUFF IS HERE)

On an unrelated guinea pig note, naturally Frida was acting like a total butthead today and had to be put in time out. I think the fame got to her head. Oh well, I guess I'll just have to feature another guinea pig next time I make a vlog ;)

Crippie's Tippie - FIDGET TOYS A FREAKING AWESOME

Crippie Plays "IS IT OFFENSIVE"

Aloha! 

Believe it or not, today's greeting is actually related to the topic I intend on discussing! Shocking... I know. Anywhoooo Crippie came across some free some on Thursday so my mom, grandma, and I went to see "The Descendants". Crippie lurvs her some Oscar nominated films, especially potentially offensive Oscar films!

As mentioned in a prior blog post, I'm not particularly comfortable with the word "retard" in most contexts. There was a scene in the movie where the r-word was dropped and some potentially hurtful things about mentally challenged people. 

Crippie understands why people might find that particular scene offensive. Out of context the scene is reaaaaaaaaaalllllllllyyyyyyyyyyyyyyyyyyyy hurtful to people with mental disabilities, BUT if you look at the scene in context the viewer would see that it is intentionally offensive. Why did the writer do that? My guess is that they wanted this specific character to seem like a totally dick. They wanted the viewers to feel the same hatred that George Clooney's character was feeling. Thus, Crippie does not find this film offensive at all. Crippie really enjoyed the film actually, it deserves every award it wins. 

The trick with movies is that there might be parts of them that are technically "offensive" and are by no means politically correct... but they are in the movie for a reason. Whether it be to prove a point, develop a character, or to be soooooo offensive that it becomes funny, etc. When Crippie sees films that are intentionally offensive she is not offended. Crippie has not seen any recent films that she finds offensive, there are older movies where people play stereotypical "retarded" people that serve no purpose to the film. those are movies are kinda offensive. So what do you guys think? Are there any movies that you find offensive to cripples? 

In unrelated guinea pig news, it took a few days but all the piggies in the big cage are getting along. Nellie and Frida and becoming fast friends. They absolutely love their new cage and all their new toys (and by new toys I mean toys they haven't seen in a few days). I am beyond thrilled with how that situation turned out. 

Crippie's Tippie - If movies like "The Descendants" horribly offend you, try to look at the bigger picture and think why they did it.

Hips To Be Square

HAPPY FEBRUARY!

Dontcha just love punny titles, Crippie certainly does! There is a reason for the punny though. Crippie's hips have been bothering her for... I dunno... maybe 5-ish years.

Yup, those are Crippie's hippies (and this x-ray is 4 years old so God only knows what they look like now). For anyone who has ever wondered what MHE was, it's the bumps and irregularities on my bones. It's most clearly visible in my entire left hip socket and in that circle on the right side of the x-ray (why yes that is baseball sized tumor on my back side).
Shockingly, my completely effed up left hip doens't bother me, at all. Literally no pain from that site. My right hip is the one that is being a mofo. It almost always causes me some form of discomfort, it's like a feeling like a lead balloon is expanding in it. Me thinks most of this pain is from arthritis.
I'm wondering if there are any solutions you guys could recommend? Why I am telling this to you, my lovely readers instead of a doctor? I know my doctor's answer, invasive surgery that involves dislocating the hip to remove whatever tumors are getting in my way and causing the inflammation. Yeaaaaaaahhhhhhh... noooooooooo. Crippie knows her hips will not last for her entire life. My guess is that I will have hip replacement surgery within the next 20 years. In the meantime I want to prolong the life of my hips for as long as humanly possible. Any hippie tippie's readers?

Crippie's Tippie- Learn to read x-rays, it comes in surprisingly handy at times.