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 - Picture This!

Ello Everybody!

I hope everyone is enjoying their weeks thus far. My week is going relatively well, I'm starting to get back into the swing of things since the loss of Mama Pig and the weather is improving so I'm not in as much pain.

Today's HAWMC blog prompt is a relatively easy and fun one. Here we go... Wordless Wednesday - Post a picture that symbolizes your condition and your experiences.

I thought for all of 5 seconds before I thought of the perfect picture to post. It's a bit of a repost... but it's still awesome.

Yup, I went for Fanny. Why? Because she is a literal representation of my condition and experiences. One of 100's of bone tumors throughout my body. Not to mention the whole needing to have surgery in order to remove these little bastards thing. The happy face drawn on the tumor symbolizes my warped sense of humor and resilience in dealing with being a cripple.

Wow, I totally sounded like an art school student there.

Well... I reckon that's it for tonight, but... I POSTED TWO DAYS IN A ROW! YAY CRIPPIE!

Crippie's Tippie - If you're having some weird object removed from your body... BRING A CAMERA!

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!

A Time to Laugh, A Time to Weep

Greetings,

Thank you all so much for your warm regards, they've meant a lot to me and to my family.

It's been a rough couple of days for me. It's funny, the weather was starting to improve and my pain levels were starting to decrease, I was on the up and up and then BAM... death. It doesn't hurt quite as much as it did when Emma died, purely because Emma's death was completely out of left field. She was practically healed when she went on a rapid decline and was dead within 12 hours. Not to mention she was only 3... she had so much time left. At least with Mama Pig I had those few days to brace myself for what was coming. She didn't respond to the medicine, she didn't eat, she didn't move. I'm convinced that she didn't die of the URI, but of old age. She just went on a rapid decline and she couldn't bounce back from it, regardless of how early we caught her URI (we caught it pretty early). 5 to 6 is the average lifespan for a piggie, so I don't feel completely robbed of time with her.

Regardless of how much I rationalize the situation, it still freaking sucks. Pulling out 5 treats and realizing you only need 4. Seeing 2 massive crosses in our yard (she's buried next to Emma). All that crap that reminds me that she's not here. I've been coping to the best of my abilities, watching funny youtube videos, eating lots of chocolate, fun stuff like that. It helps, I know that even though this royally sucks now, this too shall pass.

The piggies seem to be adjusting. We put new toys in now trio's cage, so that keeps them occupied. Nellie doesn't particularly seem to notice that anything is different. Maggie is to enthralled with her new hay-based to toys to notice anything. Frida on the other hand... she knows. As I said in my last post they were very close. I've been taking Frida out for lots of one on one snuggles, just put her in a bed and let her listen to her favorite musician Lady Gaga and her new other favorite Skrillex (I don't know why she likes that crap, but she does).

I was blasting Skrillex for her... she promptly fell asleep

She is showing some signs piggie depression. Mainly behavioral changes. She's turning into the asshole she once was, standing on Nellie's head, nipping Nellie's butt. Stuff like that. We'll just have to give her special attention until she adjusts. Just a friendly reminder, piggie depression is a very serious issue. Pigs can become so consumed with grief that they stop eating, become sick, and ya know... die. So be sure to take extra good care of your surviving furbabies. Supply them with goodies and treats. Their feelings are pretty easily influenced. 

I just realized that I had 2 posts about death this month... what the hell man? 

And if anyone is wondering, while yes my family normally does kinda celebrate Passover, we didn't this year. Granted, we had Matzoh Ball Soup and I've been listening to the "The Prince of Egypt" soundtrack several times a day. But no one in the house is exactly in the mood to do much for the holiday. 

So yeah... happy Passover to all my Jewish readers, and I hope all my goy readers had a lovely Good Friday

Crippie's Tippie - Seriously watch your surviving pigs like a hawk. Make sure they are entertained and well fed. 

Little Pig, Little Mamala

Hey Guys,

I wish I had happier news to report to you guys tonight, but alas that is not the case. Mama Pig passed away around 7:45 this morning after a brief battle with an Upper Respiratory Infection. I did everything I possibly could to keep her going, but ultimately she was beyond help. I was able to give her pain medications so she was insanely happy and peaceful when she died.

After we obtained Nellie & Emma we weren't sure if we should go back for their mother and sister. A few months later we were in the pet store, visiting the mother and sister. I walked by the cage, the piggies stayed the hell away from me. My grandmother walked by the cage, and miss Mama Pig ran over and started pouting with her "Patti Lupone" lips... and the rest is history.

Mama Pig was quite the diva. She loved being brushed, bathed, any spa treatment really. Anything except nail trimmings. She was an attention whore and enjoyed being called pretty. She would only eat her pellets AFTER the special cranberry treats were applied. She'd hog all of the comfy beds, sleep near the hay so only she'd get the freshest hay, all sorts of diva behaviors. Hell, even last week if we didn't give Mama her special vitamins before we sat down for dinner she'd stare us down and start to gnaw at the cage for attention until she was fed. 

In spite of her diva attitude Mama was actually one of our kinder pigs. She never tried to kill any of the others (which is impressive knowing the others). She'd give her humans kisses and nuzzles all the time. If ever Mama was displeased with us she'd let us know by pooping in mass quantities. She will always be #1 at #2 in my house. 

Mama Pig was always close with her daughter Frida. She forgave Frida even when she'd use her face as a step ladder. Once they moved into the big cage with Nellie, Mama and Frida became fast friends. You'd frequently see them snuggling, and you know... not using faces as step ladders. 

Frida even got to have a goodbye snuggle with Mama last night (Mama wasn't contagious). Even though Mama was stoned out of her mind she recognized Frida and snuggled close to her. 

Mama Pig was roughly around five years old, possibly older. She was predeceased by her daughter Emma. She is survived by daughters Nellie and Frida, roommate Maggie, strange pig across the room Aggie, those giant furry things Angel and Helen, and of course her humans. All of whom miss her greatly. 

Rest in peace Mama Pig, mommy loves you so much and I'll never forget you <3

Crippie's Tippie - Have a supply of metacam in your house at all times. If your pig is beyond help at least they won't suffer.

The Waiting Game

Salutations,

Quick post tonight. I'm writing this from my sofa, where I'll be sleeping tonight so I can be sure that Mama Pig has a constant supply of food and water. While she seems to show signs of responsiveness to the meds she is very unwell. She is extremely lethargic and will not eat on her own, she is also not using the bathroom on her own. There's still hope that she'll pull through this, but at this point I don't think that will be the case. She's so incredibly frail and weak, it's definitely difficult to watch. I guess it's a waiting game at this point... maybe she'll start responding to the medication tomorrow.

In the meantime I gave her pain medicine to help her get comfy, so she is stoned off her ass and enjoying life. She's probably having awesome hallucinations about shiny things. She watched tonight's episode of "The Walking Dead" with me and my friend (off topic... but OMG AWESOME EPISODE).

Mama says "I would like some ninja vibes... and UNICORNS! I like unicorns, they're shiny. I like shiny things. Where am I? Who am I? What am I? WOW! YOUR AURA IS PURPLE!" Yeaaaaahhh... she's really stoned.

Crippie's Tippie - Use a small syringe to suction out a piggie's nose (seriously I'm proud of myself for figuring that one out)

Mama (Pig) Drama

Ohai Everybody

Yup, it's a piggie post today... all about our attention whore Mama Pig.

Mama Pig recently turned the big 5, meaning she is now officially a "senior pig" (average life span of a guinea pig is 5-7 years). She takes her vitamins daily and is usually very spritely and evil in spite of her age. She has recently taken to eating the cage as a subtle way of saying "ADMIRE MY BEAUTY... or feed me. Either or really".

FEED ME

FEED ME

FEED MEEEEEEEEEEEEEEEEEE

Well, today she wasn't like that, at all. I came home from work to find a limp lil' Mama sitting on my grandma's lap. She had been extremely lethargic and uninterested in food all day. My first thought was "oh crap Mama's dying". Upon closer inspection I found crust on her nose, slightly labored breath, weight loss, and a bit of a puffed coat. This means one thing and one thing alone, an Upper Respiratory Infection (URI). My next thought was "If I don't get her to a vet she'll die".

The face of a sick little piggie :(

For those of you unfamiliar with URIs and piggies... they can kill a pig... very, very easily. If I did nothing about this Mama would probably be dead within the next 48 hours. Definitely be dead with 72.  Time is definitely an important factor when treating URIs. If you think your pig might have one (and it's pretty obvious when they do) GET THEIR LITTLE PIG ASSES TO THE VET ASAP!

Naturally it was later on the day when I found out about Mama, we called our local exotics vet about her hours. It was 5:50 and we found out her shift ends at 6:00 (CRAP) but luckily for us our vet is AMAZING and was willing to wait for Mama. So we rushed her to the vet. The vet totally agreed with my diagnoses of a URI. She had to give Mama some fluids via SubQs (they injected saline into a pocket in her skin to keep her hydrated, it buys time for the antibiotics to work). Mama was a very good girl for most of the visit, except for the whole "THE THERMOMETER GOES WHERE?!?!" thing. The vet said she wasn't running a fever nor was her breathing terrible, so hopefully we caught it in time *knocks on wood*.

Unfortunately Mama has to be on antibiotics again, I don't know if y'all remember the last time Mama was on antibiotics, but she got reaaaaaallllllyyyyyyyyyy sick from them. I mentioned this to the vet. She told me to keep Mama ridiculously hydrated. Let's hope it keeps her healthy.

Tomorrow I'm gonna start Mama on "Critical Care" feedings to make sure she's getting all of the nutrients she needs and then some.

So yeah... Mama requests ninja vibes.

Crippie's Tippie - VETS... TAKE YOUR PIGS TO THEM

Well... That's Special

Ohai!

Yup, I still realllllllllyyyyy suck. But I swear I have something for y'all tonight that more than makes up for my absence. I'll show you that later. In the meantime here's what's been going on here...

I have been in a LOT of pain. The past couple of months have been terrible pain wise. Wanna know why? Remember how Fanny irritated my sciatic nerve? Well... it looks like even though Fanny is gone the sciatica remains, and it's been having a massive flair up with this weather. To make matters worse I went to my doctor on Wednesday, she said apart from the increase in pain I'm probably developing a tolerance to my pain meds. In other words, I'm in more pain and my pain meds are no longer effective. SUPER DOOPER! My doctor wanted me to take two Neurontins, one in the morning and one at night. I tried the one in the morning thing... but that rendered me useless for the rest of the day. No good. No good at all. So I'm taking the two at night instead. Seems to be helping thus far... still in pain... but not as much. Blah.

I've been trying to be a social creature, YAY ME! On Sunday I had a "Walking Dead" Party with some of my friends. We had a grand ol' time eating brain cupcakes and watching the show. Random, but I hope I'm not the only cripple who related to this scene...

I actually have plans for this weekend too. On Saturday AND Sunday! HOLY CRAP! Working on New Year's Resolutions... LIKE A BOSS! 

So... on to that special treat that I totally owe you guys. A little backstory first. On Valentine's day my dad got me a helium filled balloon. Ok? A couple of days ago it started to die so I figured it was time to cut the balloon and let it go free. The thing is I couldn't let perfectly good helium go to waste. The result is this... I think there might be a swear or two somewhere in there... whoops

Crippie Inhales Helium from Special McSpecial on Vimeo.
Sorry about all the nose scratches... allergies are a bitch. If y'all are wondering my sister is the one singing opera and swearing in the background ;) 
Crippie's Tippie - Take a note from Hershel, if some random person asks to see your specialness, demand alcohol from them! 

Crippie Meets A Bunch of Dead Relatives

Greetings

Yup, I still suck at posting regularly. On the bright side, April is another "National Health Blog Post Month" so hopefully that will get me back into a blogging routine again.

As today's title suggests, this week has been an interesting one. There was a death in the family over the weekend so I attended the funeral in NYC on Sunday. I don't want to say I had a "good time" but it was certainly an unusual day. Apart from seeing lots of living relatives I got to "meet" some of my relatives who are no longer with us. Before the service we went to a nearby cemetery to visit a family plot where some of my great-grandparents and great-great-grandparents on my father's side are buried. It was nice to be formally introduced to them.

Those were not the only living-impared relatives I met on Sunday. Before I tell you, here's a little backstory. The funeral was held at the cemetery, it is a MASSIVE Jewish cemetery in NYC. When I say massive I mean MASSIVE. Dead Jews as far as the eye can see (yup, I'm going to hell). Here's picture of a teensy weensy corner so you can get a slight visual idea.

The relative we lost was on my father's side of the family. Once we found out which cemetery she'd be laid to rest in we realized we had other relatives there... on my mother's side of the family. We figured we'd visit them if we could, but hell, this cemetery is so huge chances are we won't be able to. Weeeeellllllllllllll it turns out that my newly deceased aunt on my father's side is buried eerily close to my relatives on my mother's side. Less than a 5 minute walk to visit both of 'em. That's pretty freaking amazing, especially considering the size of this place. Thus I was formally introduced to some of my great-grandparents and great-great-grandparents on my mother's side. I enjoyed seeing my great-grandparents and giving them all their appropriate greetings. But man, it really is a small world after all.

After the service I went to a restaurant with my living relatives and we all celebrated my late aunt with family, memories, and delicious food.

I miss my aunt very much, she was a strong, independent women who loved life. She stayed strong all the way to the end. When she found out that her time was coming, she decided to make the best out of the situation and planned for a kick-ass service. Seriously, it was a lovely service and everything looked lovely, as per her specifications ;)

Love you Aunt Bobs, rise & fly.

Crippie's Tippie - Like I've said before, appreciate the people you have while you have them.

Rare Disease Day 2013!

HAPPY RARE DISEASE DAY Y'ALL!

Yup, it's one of Crippie's favorite holidays of the year! Why? Because not only does it celebrate cripples, BUT it celebrates the reaaaaalllllyyyyyy special ones! It's days like this when we take pride in our ability to baffle doctors, confuse the crap outta normals, and remember that we are not alone. I know how frustrating being a cripple can be, but days like today remind me that there are cripples all across the world that know the same frustrations.

Today for example, my arm was bothering me at work, so I had to discretely ace bandage it and hide my arm for a few hours until the pain subsided. I try my best to hide stuff like that at work because most of my coworkers don't know how crippled I am (they know I have a parking permit, that's about it) and I'd like to keep it that way. Anyways, the feeling of needing to hide can be kinda disheartening at times, and it definitely can make you feel isolated. BUT I know that even though I am the only person in my office with a severe disability, I'm not the only person in the world to deal with crap like this. Us cripples have a special set of problems and our own special set of crap that we have to deal with. But dealing with all the problems and all the crap together makes getting through everything easier. Much easier.

To commemorate rare disease day, I opted to be the internet female that I am and looked this stuff up...

YAY! The internet approves us overall! 

w00t... they don't hate us! 

Well yeah, tumors suck

And while I was there I looked this up too....

HECK YEAH!

Crippie's Tippie - Always be proud of who you are, not just on your designated holiday. Also, be proud that you get a holiday ;)