HAWMC - Nobody Ever Suspects the Butterfly

YES! SIMPSONS REFERENCE!

Before I explain that reference I should probably tell y'all what today's prompt is. If your health condition was an animal, what would it be? Is it a real animal or make believe?

Well, as soon as I heard the prompt I immediately thought of this...

Once I got the Simpsons reference out of my system I actually thought about the question. I think I found a pretty accurate representation of my disability in animal form. Ladies and gentlemen I give you... THE EUSKELOSAURUS! 

RAWR it's a dinosaur! Not just any dinosaur though... this bad boy is kinda crippled. It has bowed arms and legs. It reminds me of how I usually carry my arms. For the record I can straighten my arms for the most part, it's just not terribly comfortable.

I hope I answered that question correctly. I'm not sure... but then again this prompt really doesn't make a whole lotta sense. Meh... whatever. Moral of the story... dinosaurs were also full of bowed limbed goodness.

Crippie's Tippie - If you ever get the choice to be reincarnated as animal. Become a butterfly. Nobody ever suspects the butterfly. MWAHAHAHAHAHAHA

HAWMC - Dear MHE...

Ohai Y'all

Whoops... forgot to blog last night. It was a long day and I fell asleep pretty quickly. Oh well. On to today's prompt!

Letters - Write a letter to your condition – what do you want to get off your chest?

This should be fun! I wrote a lil' letter to my disorder, and then I turned it into a picture to make it purdy. Enjoy!

 
I think I got the point across ;) There isn't really much to say, I could write a whole big letter but this really just sums it up nicely.Oh, as promised here's a picture of the rocks I was working on :D

I'm pretty proud of the fact that I was able to reach down to paint the lower parts. YAY ME!

Time to get some sleep. I've got a busy day ahead of me, I'm driving to a new area AND I'm driving to said area in order to be social with people! Gotta love working on resolutions :)

Crippie's Tippie - Even though you might be angry with your disability at times, try not to be consumed with what you cannot change. Accept it, and work around it.

HAWMC - Way Ahead of Ya

Ello Everybody!

Today's HAWMC is super freaking easy, so I'll just get it out of the way.

Sharing Resources - Create a "care page" - a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!

What a coincidence... I built a resource page into the blog. Just click on "Crippie's Resources" to check it out. See, that was super freaking easy.

Moving on, my day was very exhausting... but in a good way. Ya see I've been helping out with local drama clubs for about 8 years. Mainly painting scenery, more specifically... rocks. I am really good at painting rocks. But I had to stop painting because Fanny was s'darn painful. I definitely missed my rocks, so when someone asked if I could paint  rocks for a local production of "Peter Pan" I gleefully accepted. So I spent the day painting rocks. Lots of rocks. Crap ton of rocks. I'm tired, I'm sore, I'm in a fair amount of pain, BUT I am so freaking happy to be back in the saddle. Honestly once Fanny started growing I fully expected to never be able to paint my rocks again, thus I'm pretty stoked to be in a position where I can paint. It definitely hurts a whoooolllllleeeee lot more than it used to, but I'm not going to let that stop me.

This is one of those hobbies that I enjoy while I can because I am fully aware that I won't be able to do this forever. I probably have a few more years left in me before everything becomes too painful. But until that day arises... I AM QUEEN OF THE ROCKS!!! (I'll try and get a picture of my rocks for y'all tomorrow)

Crippie's Tippie - Enjoy what you have while you have it

HAWMC - My name is MHE and I'm a Genetic Disorder

Ohai Everybody!

So I'm a day late with this "Health Activist Writer's Month Challenge" thing. Sue me. In my defense, I've discussed yesterday's prompt in the past.

Today's prompt is... "Introduce you condition to other health activists. What are 5 things you want them to know about your condition?

Okay... LET'S DO THIS! AA STYLE!

MHE - Hi, my name is Multiple Hereditary Exostoses and I'm a genetic disorder
Everyone - Hi MHE!
Crippie - Why don't you tell everyone a little about yourself
MHE - Um... ok... well... for starters I am a genetic disorder that causes benign tumors to grow on bones
Crippie - What else?
MHE - I... um... I can be very painful at times. I mean... well.. I can cause a lot of pain. I mean it started by growing on the bone, but then I was hooked! And by hooked I mean one of the tumors snagged or irritated the surrounding area causing pain.
Crippie - I see, is that all you do?
MHE - No... um... I also cause skeletal deformities. Apart from the tumors. THE TUMORS WERE JUST A GATEWAY DEFORMITY! 
Everyone - Gotta watch out for those gateways man
MHE - Before I knew it I was warping bones and causing limb length discrepancies. I'M A MONSTER! 
Crippie - Have you sought treatment?
MHE - Well, I can only be treated through surgery right now. But I guess pain medications help manage me.  
Crippie - What do you want everyone to know about the people you effect? 
MHE - That they're just like everyone else, except riddled with tumors
Crippie - Ok, thank you MHE. You may go sit down. *Everyone claps*

Yup... I just did that. GO ME! I have every intention of posting every single day this month. Let's hope I'm able to do so :)

Crippie's Tippie - People with MHE are just like you... except for that whole being riddled with tumors thing

P.S. If anyone was wondering what I thought of the Walking Dead finale... I thought it was a tad underwhelming, but everyone I hated died so I really can't complain. Plus, the cripple lives for another season! GO HERSHEL!

NHBPM - That's My Jam!!!

Ohai!

I hope y'all are having an excellent weekend thus far. My weekend's been good, been very busy working but I'm not complainin'.

Today's NHBPM prompt is quite entertaining, and I could have done more with it if grooveshark would've let me share playists... oh well. The prompt is..

Health Playlist. Make a playlist for your health community.

Again, I couldn't embed a playlist here go I opted to pick one song that is epitome of awesome, an anthem for teh cripples everywhere, our jam if you will :)

Yup, I just went there. Anybody else have any awesome cripple songs that I could add to the playlist, IF I HAD ONE?!?!?!

Speaking of crippledness, I was definitely a bit of a special cripple today. I figured I'd summarize why with two photos

While I was at work today at my hand would hurt periodically, specifically one of my fingers. At first I thought nothing of it and brushed it off. But it kept freaking happening. Upon closer inspection I noticed that my finger was kinda swollen. In other words, a tumor on my finger has irritated whatever tissues are near it. It'll pass in a day or so, but in the meantime I'll avoid moving or bending it to prevent further irritation. What makes this scenario so special? Um... well... can you guess which finger I should be keeping elevated? SENSITIVE PEOPLE SCROLL PAST THIS PHOTO

If you guessed my middle finger, YOU ARE CORRECT! You get a cookie. I have decided to name the troll tumor Birdie, mainly because that's what I'll be flipping for the next day or so. Luckily it's starting to feel better already, let's keep our fingers crossed what I don't accidentally flip of any co-workers tomorrow :D

Crippie's Tippie - If you happen to injure your middle finger, consider wearing a finger brace... that way people will know that you probably didn't mean to flip them off. Also, while you have said brace on, be sure to casually flip people off... they'll think it was an accident! 

NHBPM - Cripple Rage Comic

Whazzzzzzzup

Happy Friday everybody! Tonight's NHBPM blog prompt certainly looks entertaining...

Create a comic strip about your health/life/community

Oboi! Sounds exciting! I opted to be the internet female that I am and make a "rage comic" because they're easy to make. Without further ado I give y'all a rage comic summarizing my disability...

There we have it people, my disease in a nutshell... my bones are riddled with troll tumors.

In other news, me thinks the weather is changing cause I've been rather achy recently. I can actually tell when my pain medicine starts kicking in at night. Gotta love that feeling of the pain melting away :) That plus my super awesome melatonin gummies have made night time less suck-y. I used to just toss and turn for hours hoping that I'd either get tired or stop hurting. Now I'm tired and not in pain. Yay for feeling normal!

In animal news, Angel's 2nd anniversary with us is this Sunday! Last year we cooked her a hamburger and she was happiest dog on the planet. This year, we don't have burgers and Angel is getting slightly porky, so I'm gonna cook her a slice or two of ham and make her run around the house for it. Angel might be a senior (vet says she's somewhere between 8-12 years old) but her face lights up when she sees food. Speaking of senior animals, Mama Pig is starting to show some signs of age. Primarily, she is getting lazy. She has her favorite spots near the hay and she prefers to stay there. I make her run around the cage daily just to be sure that she still can. Since she likes to stay in one place most of the time, she is also prone to lying in her filth. Thus, we have to change the bedding around her favorite spots every other day and wash her bum periodically. Once the weather gets warmer she's gonna have a nice long bath and a butt hair trim... oh joy. Mama is around 5 years old. I want to keep her happy and healthy for a long time. Me thinks I'm gonna obtain some multi-vitamins for her to try. Yes, there are multi-vitamins made specifically for guinea pigs. I'll do a review of 'em if I ever get any.

Crippie's Tippie - Wanna make your own epic rage comic? This is probably one of the better sites to make 'em on.

Sweet Charity

BROADWAY TITLE, YUS!

I hope all of my fellow crippled comrades had a splendid weekend. Mine was purdy damn awesome. As I've mentioned maaaaannnnnnyyyyy times throughout the past couple of weeks, my BFF and I are hosting a Scentsy Party benefitting the MHE Coalition, and on Saturday we had an open house/party for it. I was a social creature and had a blast with my friends and family. The open house was a huuuugggggeeeeeeeeeee success. I want to thank everyone who has contributed to the fundraiser thus far, and I want to give a special shout out to my BFF who is donating her commission for the cause. YOU GUYS ARE SO FLIPPIN' AWESOME, LOVE Y'ALL!

I can't believe how much I actually did this weekend, apart from the whole being social thing. I walked up and down the stairs a buncha times, stood for rather long periods, did lots of bending and moving in general. Not bad for less than two weeks post-op! I also can't believe how active I was considering how much my damn incision has been hurting. Seriously, this has probably been the most painful part of my damn surgery. Ya see, now that bandages and staples are off, my incision is free to tighten and heal naturally. This is usually uncomfortable, but the tightening paired with fact that the skin around incision moves whenever I do makes for a rather painful feeling. It kinda feels like my skin rips whenever I get up. Of course its not actually ripping, but it feels like it. I'm probably gonna cover the scar with bandaids tomorrow to help everything stay in place. I reckon I should also try to not move whenever possible and let my incision heal. Regardless of how much my damn scar hurt, this weekend was awesome and I wouldn't trade it for anything.

Scentsy Buddies!

The Scentsy MHE Fundraiser will continue online through November 3rd. If any of y'all want to do some holiday shopping for a good cause you should check it out. Also, sorry if I'm annoying people by constantly talking about the it, I swear I won't talk about it as much now.

Crippie's Tippie - Scensty Parties are surprisingly fun and entertaining

BUDDIES!!!

Hi Everybody!

I hope all my readers are having a lovely week, and enjoying the awesome late summer/early fall weather. I haven't done anything special over the past two days but my recovery is progressing swimmingly. I am now able to practically walk unaided! Yup, you heard me right, I can walk a week and a day after hip surgery! I kinda need to hold on to wall or something sometimes, but still, I CAN WALK! The limp is hardly noticeable and it doesn't hurt at all. There is kinda a weird weak feeling in my hip, that's about it.

I cannot even begin to describe how blessed I am that my recovery is going the way it is. I've had my share of nightmarish recoveries. Up all night crying in pain, been there. Not being able to walk for year, done that. This recovery has been so freaking easy. My pain levels were a 3 AT THE WORST. I wasn't completely immobilized. I was able to sit down (I was slightly worried about that). It's been like a summer vacation with a little restricted mobility and staples in your butt!

I have to mention that this surgery has been completelyyyyyyyyy different than any other surgery I've had. Why? Because I've had so much support from my family and friends. I'm completely shocked at how many people wished me well on facebook, here, and in general. Friends told me to feel better (and sent sympathy cards). Some of my coworkers have even texted me get well wishes... how sweet is that! Even some of my relatives that had gotten "used to" my surgeries sent cards, many cards! I remember being 13 or 14, having a surgery and having so very people caring about me and how much that sucked. This is a complete 180 and it feels amazing!

Ain't it something how a little gesture like a card makes a difference? Now imagine what a slightly bigger gesture could do. Ya see the main reason I am hosting my Scentsy Fundraiser is to help kids who are about to walk in my shoes. The MHE Coalition does so many things for people with my disorder, one thing they do is send "Care Packages" to kids having surgery and their siblings. These packages are filled with toys, candy, all kinds of goodies. What a fantastic way to show a kid that's going through a hard time that there are people out there who do care for them, and that everything will get better.

Now, Scentsy makes a product called "Scentsy Buddies" which are stuffed animals filled with a selected scent. These guys are soft, cuddly, adorable, and soothing. They would make for a terrific addition to the care packages. I would absolutely love to buy a bunch of Scentsy Buddies and send them to kids all across the country who are recovering from surgeries. Do you want to help? You can donate a Scentsy Buddy too! How? Just contact me at crippies_corner@yahoo.com or kthayer.scentrep@gmail.com for information. You can even choose which animal and scent you want to send, or you can just leave it up to Crippie!

There's a super amazing special going on now that if you buy one Buddy YOU GET ONE FREE! We can double the amount of children we help for nothing! C'mon comrades WE CAN DO THIS!

Crippie's Tippie - If you know someone that's going through a tough time, let 'em know that you care. It means a helluva lot.

I'm Scentsy and Know It!

Happy September Everybody!

September is certainly going to be an exciting month for Crippie. I will be having my 11th surgery in 2 weeks and more importantly I'll be starting a (hopefully) huge Scentsy fundraiser for the MHE Coalition!

For those of you just joining us I was diagnosed with Multiple Hereditary Exostoses when I was one. It causes benign tumors to grow on your bones. MHE causes pain, restricted mobility, and limb deformities. I have well over 100 tumors throughout my body and I live in constant pain.

The MHE Coalition is one of my favorite charities. It's a 501(c)3 organization that is committed to improving the quality of life for people living with MHE through support, information, and research. They even create "We Care Packages" which are packages filled with toys and other goodies for children who are having surgery and their siblings!

So what is this super awesome fundraiser for this super awesome charity? Crippie is having a Scentsy party! Yup, I'm teaming up with my BFF/Scentsy Rep to host the Scentsy party to end all scentsy parties. What is Scentsy? Scentsy is a basically a wickless, flameless candle... ONLY MORE AWESOME. For those of you who like to burn candles, these puppies are safe, ultimately cheaper than buying candles, AND they smell fantastic. For those of your who don't like to burn candles (like myself) they have oodles of other products like lotions, soaps, room sprays, etc.

Why Scentsy? Scentsy candles and products are awesome and very practical, especially for people with disabilities. Believe it or not I actually use Scentsy products to help ease my pain. Certain smells make me happy (like fabric softener... mmmm). Scentsy makes a product called "Travel Tins" which a scent in a portable little tin. You can get a little whiff of your scent whenever you need it. I have a travel tin that smells like fabric softener, whenever I'm in pain or just generally unhappy I open my tin and the smell helps relax and distract me. I actually plan on bringing my fabric softener tin to the hospital when I have my surgery. The smells of the hospital bother me greatly and make me very rather gloomy, so this will help lift my spirits... at least a little. If a little tin with fabric softener scent can do so much for me... I can only imagine what it can do for some of you!

So here's how this is gonna work. If any of y'all are interested in obtaining some kick-ass scentsy products just check out the badge for the fundraiser in the top right corner and shop away. 25% of the proceeds are donated to the MHE Coalition. If anyone has any questions about the products just hit me up at crippies_corner@yahoo.com or email my awesome Rep Friend at kthayer.scentrep@gmail.com I will also be hosting an actual party at my residence for my local readers, but I'll be posting details about that on a later day. This is a really great charity y'all, so let's make this happen! And can I get a HUUUUUUGGGEEEEEE shout out for my BFF/Scentsy Rep who will be donating the commissions she makes of these orders! THANKS KELSEY!!! YOU'RE FREAKING AWESOME!!!Crippie's Tippie - Spread the word about our awesome Scentsy Party!!!

Four's Company

Salutations!

The Quartet wants to thank everyone who called them adorable. Phase Two of the introduction phase is going quite swimmingly. Maggie had a rough day yesterday with lots of tears, but today she made a complete 180. She was wandering around the cage, eating, drinking, hanging out with her new buddies, etc. She seems very excited about the new living arrangement. Nellie, Mama, and Frida aren't exactly as enthralled as she is, but they tolerate her. One thing I've noticed with the piggies in general is that they are happier when in larger groups versa just pairs. When Mama and Frida were in a cage by themselves they would constantly bicker, Frida would stand on Mama's face to get attention and just be an all around asshole. Once Nellie joined the mix they were all visibly happier. Just goes to show ya folks, unless your pig is a freak of nature like Aggie, the more the merrier.

To those of y'all wondering how the lone wolf is doing, she's very content. Aggie's always been a bit of loner, she seems much more relaxed now that Maggie is no longer stealing her hay.

In cripple related business, I was rather achy today. I think I might've pulled a muscle in my bum during yesterday's introduction (I had to bend down to move piggies). Nothing a little heat won't cure but still, weird. I'm also contemplating obtaining one of those heated chair massager things for work. Me thinks it could help my back and bum. Can any of my lovely readers recommend any good ones?

Fanny probably had a role to play in today's pulled muscle (she rubs against that one). This might be my first surgery where I am really, really, really excited about having it. Also, I found out that I can't keep Fanny in a jar once she's removed. Alas, I guess I'll just have to stick to pictures ;)

Sorry for the short-ish post, I'm super tired and I've got a long day ahead of my tomorrow. Night y'all!

Crippie's Tippie - Pigs are very social creatures, they like having oodles of friends

Tumor, With Hate

Ohaiiiiiiiiiiii

I hope all my readers had Fabulous Fridays. Alas my day wasn't so completely fabulous. The weather was not on my side at all today. It was either pouring rain or about to be pouring rain throughout the entire day. On the bright side, I learned that I do very well when driving during torrential downpours. All I had to do was turn up my music all pay attention to what I could see of the road and I was fine. On the downside I was in an insane amount of pain today. Fanny decided to be a raging bitch today. Not only was she hurting my hip, but the tumor itself was causing pain, AND she was sending shooting pains up my spine. To all my readers who have bad sciatica, I applaud you cause that must suck beyond all reason. My ribs were also being stupid and causing pain when I was breathing, not cool.

Of course, this was all occurring while I was at work. There were times when the pain made me very foggy and made it difficult to concentrate but I had to suck it up. I played up-tempo music, swiveled back and fourth in my chair, and noshed on M&Ms and chewing gum. While it wasn't 100% successful, I got through the day and I don't think anyone noticed that I was off. That's good I guess. Once I got home I took some meds and rested with the heat pack, and I got back to my normal pain level after a couple of hours.

My "I am NOT amused" face

Now I am resting comfortably with Helen and my heat pack, bracing for tomorrow. Tomorrow's weather is supposed to be similar to today's, thus I need to prepare. For the ribs I use shapewear meant for making your tummy look flat. It's rather tight so it holds my ribs and their tumors in place. For Fanny I'm gonna try one of those thermacare back wraps. Maybe that will help... *tumors crossed*

Crippie's Tippie - For those of you with MHE, sometimes compression helps when your tumors are catching, just make sure it's not too tight!

To Slice or Not to Slice

Greetings!

I hope all my crippled comrades had a lovely Monday. Mine went very well, mainly because today was my mom's birthday! Crippie successfully managed to surprise her mom several times today. For example, I told my mother that I had to go to work early today, while in reality I had to go pick up cupcakes (that was my mom's only request for the day). Crippie rushed out the door without properly saying goodbye, only to sneak back in the house 10 minutes later with cupcakes in hand. Crippie is sneaky like that.

Moving on, I actually have a cripple question for y'all today! Crippie has had 10 surgeries, most of those surgeries were elective. Crippie and Crippie alone decided to have certain things done. People have asked me "Why on Earth would you want to have surgery?" and "How did you decide that surgery was necessary?".

First off, most MHE related surgeries involve removing problematic tumors. If a tumor gets wrapped up or caught in a muscle or a nerve it hurts like a mofo. If it does not resolve itself on it's own, it needs assistance. Crippie chooses to have surgery when...
1) The pain of the surgery will probably be less than the pain I'm in now
2) Quality of life is affected
3) There is the potential for something to go realllyyyyy wrong
4) It's a super fun high risk tumor

Essentially Crippie chooses to have surgery when the pros outweigh the cons. The cons can be pretty serious sometimes. Any surgery has the potential to go very wrong. Complications happen. Crippie is well aware of the damage a surgery can do. So the problem has to be pretty serious.

Take Fanny for example, I'm choosing to remove her for several reasons
1) My hip freakin' hurts
2) the sciatica is causing mobility issues with my leg which could get worse (my leg could become permanently bent)
3) She's a super fun high risk tumor
4) Her size is become cumbersome, I can't lay on a hard surface

To help illustrate my point, I made a little checklist thingy for y'all. Maybe it'll be useful for someone...

Crippie's Tippie - Do not take surgeries lightly, they suck... so your problems have to suck more than they do.

Any News Is Good News

Greetings

The Mama Pig Update - Mama Pig seems to be stable during the days. She's got a spark in her eyes and is very spritely. Nighttime is still an issue though. She was very gassy while I was monitoring her tonight. I guess it's good that she's able to pass it, but it shouldn't be there in the first place. I'm tempted to give her more anti-gas medicine tomorrow... maybe. On the bright side she was still very perky while I was monitoring her. She had lots of treats and took a few poops. Maybe I'll take her out for a drive over the weekend to scare some crap outta her. Overall, not much change with the poops, but she is getting perkier... which is very reassuring.

Eight hours from now Crippie will be in that nifty MRI machine. Crippie can't say that she's worried though. I'm definitely curious as to what this "sound" that everyone keeps telling me about will be like and if I can tolerate it. My only concern would be if  I'd have to sit on a hard surface with no cushioning, purely because Fanny the Ass Tumor is freakin' huge and it hurts when I have to lie down on anything hard. I also wonder what the MRI technician will say when he/she sees my scan. When Crippie had a body scan done a few years back the technician was like "WTF". The guy was not expecting to see my skeleton in that condition to say the least :D

People have asked me if I'm worried about the results of these MRI's. Honestly, Crippie isn't worried. Something is wrong with my hips, that's pretty obvious. Since there is no "GREAT NEWS, YOUR MRI SHOWS NOTHING WRONG WITH YOU" scenario... Crippie has braced herself and accepted that something is wrong, something will more than likely be found on the MRI, and I will need surgery to correct it. Even though Crippie is pretty sure that the results of this MRI will be "Ohaiiii, that giant tumor on your ass is irritating your sciatic nerve... it needs to come out". There are other possibilities, like other sneaky tumors causing the problem, but I don't think that's the case. In this instance, any new that tells me what's going on is good news.

That's not to say there couldn't be bad news here, Fanny's somewhat rapid growth makes her a special, higher risk tumor. With MHE, there is always a chance that your tumors could become cancerous. I've had special high-risk tumors before and thankfully I've had them removed before they had the chance to become bone cancer. Worst case scenario of this MRI is that I find out that Fanny is malignant. If that's the case surgery would be muuuuuucccccchhhhhhhh sooner rather than later. Although *knock on wood* I doubt that Fanny is cancerous, she doesn't cause me any real pain.

At the end of the day... my hip freakin' hurts, I want it to stop hurting. I don't care if it means having my 11th surgery and a scar on my ass. I'm not worried about having surgery. I don't care about the week or two of pain. I want my damn hip to stop hurting all the time. This is why Crippie is not nervous, Crippie is busy focusing on getting rid of the pain. Keep your fingers crossed for me my fellow crippled comrades!

Crippie's Tippie - Might seem obvious, but dress appropriately for an MRI, absolutely no metal. Crippie is wearing leggings, a tunic, and shoes with no metal.

Rice Crippies

Ohai,

The Mama Pig Update - We are continuing with the two salads treatment today because of the very positive results of last night. Crippie cannot even begin to describe the looks of joy on their faces when they see their salads. Again, the pigs were very content and had adorable food comas... I swear some of them were smiling! Guinea pigs have teeny tiny bladders, so normally when you have them out for a prolonged period of time they will wee and poop on you. Mama Pig hasn't been doing that for the past couple of weeks. Tonight Crippie wanted to see how well Mama Pig's bladder worked without any massages or flushings of any kind. So, Crippie took a dog bed, put one of those waterproof covers on it, put Mama Pig in it, and just let her be. Mama Pig and I watched one of Crippie's favorite shows "16 and Pregnant" (DON'T JUDGE MEEEEEE) for a good two hours. I do believe Mama Pig is a middle aged woman trapped in a guinea pig's body... she really enjoyed it! She would watch the screen, purr when she heard people fighting, and gazed with wonder at the pretty colors. Thankfully Mama Pig was able to take massive wees and poops ALL BY HERSELF!!! YAY MAMA PIG!!! Crippie is finally starting to feel optimistic about her prognosis. She's made it past the two week point (when we lost Emma) and she is able to pee and poop all by herself!!! Crippie is gonna keep her with the double salads for a few more days until her tummy fully gets back into the swing of things.

Moving on, Crippie was planning on visiting the boys today but I just wasn't feeling up to it. That and I was called in to work early so I didn't have time. I'll go see them on Thursday. But yeah, Crippie had a rough day pain wise. It's all rainy and muggy and boy howdy did I feel it. All my joints felt achy and damn near all of them were popping, snapping, and crackling. I literally sounded like rice crispies. While sounding like a cereal is mildly entertaining I was realllllllyyyyyyyyy uncomfortable. Crippie had to constantly pop my wrist and shoulder at work and my hips and arms made crackling noises when I moved. I kinda wonder if anyone heard me... Do any of my readers make super fun noises and can people hear you?

So yesterday I mentioned that I have a little reaction time issue. Crippie figured now is as good a time as any to discuss it a little more. Crippie has MHE. MHE is a genetic disorder which causes a lack of heparin sulfate to be produced in my body. This causes the bone tumors. Recent studies also show that this heparin sulfate deficiency causes "Autism like symptoms". While Crippie isn't exactly Autistic, I do display some "Autistic Tendencies". This delayed reaction time is one of them. A split second decision takes about 1 or 2 seconds for me. Doesn't seem like much, but it can add up. For example tonight Crippie was opening a new bottle of soda. I know to open the bottle slowly and I was watching the bottle to see if it was gonna overflow. It really started to fizz and my dad yelled "CLOSE THE SODA" about 1.5 seconds later I closed it. The soda didn't spill luckily but it was obvious that it took me a second to process that information. It's rather annoying at times. If someone is trying to tell me something that requires a lot of thought it takes me a few seconds to figure out what the hell they are talking about. Crippie is trying to train herself to process things faster, and I'm getting slightly better at it. Believe it or not, video games seems to be helping me with this. They require you to pay very close attention to something and you need to time things properly.

Also, Crippie was thinking of making a video of general guinea pig tips. Does anyone have any piggie questions they'd like to hear me answer?

Crippie's Tippie - Don't be dissin' "16 and Pregnant" and video games, they actually serve some purposes. 

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

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. 

Well... Now What?

Happy December!

After 30 days of having prompts I have to get used to coming up with my own topics again! I figured I'd jus do a quick Crippie update on everything that's goin' on my life since I really haven't posted about it in a month.
Work- Work is going pretty well. I'm working between 30-60 hours a week at the moment. While it is very tiring thankfully that tiredness doesn't kick in until after I've driven home. Once I get home I have enough energy to play with the pets and eat dinner, that's about it.
Driving- Having a set of wheels is purdy damn awesome. I'm having fewer driving related anxiety attacks, which is good. Although I'm having more anxiety about running out of gas (I'm not quite comfortable with driving to the gas station by myself yet), but that will go away eventually.
Arthritis- As far I'm aware my arthritis hasn't been causing any issues. My hips are ok and I can move my fingers for the time being. Not bad considering I'm on a lesser dose of anti-inflammatory drugs.
MHE- My MHE hasn't been terrible. There are some tumors in my ribcage that have been catching on things recently... not cool. It's not the worst rib flare-up I've had so I really can't complain.

I do have a plan of revenge for my stupid freakin' ribcage. Sunday is Crippie's birthday (23... YAY ME). Crippie's college roomie is coming out for the weekend and we are both getting tattoos. Guess where I'm getting mine... yup, ribcage. That'll show those stupid tumors that I don't care if they catch on something or not. I'll post more about that on Monday (with pictures, no worries).

So that's about it, definitely have some interesting stuff going on right now :).  

Crippie's Tippie- Heating blankets work wonders when the winter achies come around.

Cripplefest!!!

Ohai Everybody!

In case you guys are wondering why I usually post at insane hours of the night...
a) I'm still on a college student sleep schedule
b) I think I do my best work at night... at least I like to think that
c) I'm usually in pain during the night and blogging helps distract me.
Choice "c" is the reason tonight. My hip freaking hurts. Apart from the feeling that a lead balloon is expanding in my hip socket (arthritis) me thinks that either a tendon or a ligament has caught somewhere in the hip joint (MHE). In other words, I'm in a lot of discomfort and pain right now. The pain meds I take should kick in soon, but in the meantime... OUCHIES!

However, I'm not going to let a little problem like acute pain get in the way of the awesome weekend I had. This weekend was CRIPPLEFEST, the day where me and some of my fellow cripple that have MHE get to hang out. While Cripplefest was small this year, only 4 cripples, we had a wide array of people. Even though we varied in ages from mid 50s to 10 years old and have only been in the same room with one another for maybe a few hours, we feel like family. My cripples and I had a dandy time competing in scar wars (I won), surgery wars (I won), asshole doctor awards (didn't win), and impressive tumor awards (didn't win... RIP Pointy). One of the other cripples and I had a dandy time discussing our hatred for high-heeled shoes (they royally hurt our ankles) and how flats need to be prettier. It really is fun to be able to talk with people who are in the same boat that you are. Cripplefest is probably the only day a year when I truly feel "normal".

A group of Crippie's Tippie's for fellow Crippies- If your doctor doesn't know about your disability... find another doctor. If your doctor knows about your disability but continues to screw up... find another doctor. If your doctor doesn't listen to you... say it with me everyone FIND ANOTHER DOCTOR!

The Internet & Disability

Sup!
This is my post for "Blogging Against Disablism Day 2011"


As promised here I would make an entry about how the internet is one of the greatest advances for the disabled community. The internet has many benefits for the disabled community.
-Easy it is to access and share information about your disability. I'm a member of support groups for my disability and I get a wealth of information on how to manage my disability from there.
-Easier means for scientists and researchers to contact people to make medical advances. I've met several researchers working on curing my disease and I've donated some of my removed tumors to science.
-Social aspects, I get to talk to people when I'm normally too weak or in too much pain to leave the house.
-DISTRACTIONS, when I'm in pain there's no better cure than some LOLcats and a stupid YouTube video.
-The internet brings the world to my fingertips when I would not normally be able to excess it.
Here's an article on how the internet impacts people with disabilities.

Crippie's Tippie- "Charlie The Unicorn" is the best video on YouTube... ever. I know this isn't much of a tip, but people need to know these things.
Crippie's Actual Tippie- To all of my fellow cripples, we cannot and we will not let our disabilities get the best of us. Sure, our lives will be more challenging but there is no way in hell that I am going to let my disability stop me from doing what I have to do.

If You Can't Fly...

Salutations,

Yesterday I had a rather eventful day. I attended "SPD's March Madness Portfolio Review and Seminar" in NYC. I had an awesome time, and no one said my portfolio sucked. If you want to see my portfolio btw you can click HERE. While I did have an awesome time, due to my disability special considerations had to be made.

How "Normal" person would have attended this event...
1) Obtain a ride to the train station
2) Take the subway
3) Walk to the event
4) Enjoy said event
5) Repeat 3,2, and 1

Unfortunately, that wouldn't work for me. Apart from the fact that I have chronic fatigue and wouldn't have been able to walk from the train station to the event. I also cannot go on the subway, the vibrations from the cars travel up my legs and it hurts. So I had to go about this in a slightly different manner.

1) Obtain a ride to the event itself
2) Have a bunch of coffee because I wouldn't be able to stay focused otherwise
3) Enjoy said event
4) Obtain a ride back and fall asleep in the car

So, it's not what my peers would have done, but I least I went. Just goes to show you, as long as the destination is the same, who gives a crap it the journey is different.

Crippie's Tippie of the Day- If you want to do something, find a way to do it.