Don’t tell me I talk about my illness too much. Every movement. Every breath. Is a reminder that I’m not ok. That I may never succeed.That I can’t do things that normal people do. That everyday is a struggle. Never ever tell me I talk about it too much.

2

Because I’m bedbound with a serious neurological condition [medical evidence], any mattress I use becomes worn quickly. I can’t cope with this because of the painful effect on my spine, so I have to replace the mattress as soon as it becomes an issue.

I’m planning to move away from my current accommodation at the end of Feb. 2016, and as the 2nd email says, I need to pay $255.20 for the replacement mattress by this time. I would appreciate any help I can get with this as my low social security payment cannot cover this cost. This is a link to my PayPal donations page, or you can donate to my YouCaring page. Thank you.

#NO Shame Day

I’ve always tried not being ashamed about being disabled, but it’s a lot easier said than done. So it’s always good to have a reminder to keep being fabulous and that disability can become part of your identity. I have Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, Obsessive Compulsive Disorder (with the side benefit of completely random panic attacks), asthma, and I’m also on the spectrum as a fabulous aspie. 

I have never loved myself more in my life, than I do now. Learning to accept disability as part of my identity has improved my life and self-love so much.


Image description:
First row across
Pic1: Selfie of me wearing my rainbow striped vogmask. Used during winter to keep my asthma at bay. Pic2: A gluten-free vegan round cake with the words Happy Cripversary! written on it. Pic3: Whole body pic of me sitting in my chair wearing my camo jacket and hot pink leggings.

Second row across
Pic1: Pic of my hand holding a regular days worth of pills (9 total). Pic2: Picture of my hand stimming with a plastic flexing ball, and wearing my chewigem bracelet. Pic3: Picture of my hot pink KT tape. 

Third row across
Pic 1: Me wrapped up in winter clothes clutching my Toothless from my Build a Bear experience. Pic 2: A picture of Lush body bars, bath bombs, and shampoo bar. Pic 3: A picture of all my medications, from my nebulizer tube, ketamine cream, doterra’s deep blue rub, vogmask, inhaler, lemon essential oil, tiger balm, lidoderm, and all my pills. 

Reblog if you would make accommodations for a disabled rp partner.

Hey so uh. I’ve noticed a lot of messages that give me a lot of ego boosts in taking “the time I need for my health” but I notice there’s not a lot of positive messages on making accommodations for my needs as a disabled rper.

An example? I can’t write starters all the time. When I have the energy (which is rare), I can do a few, but otherwise I can only do them under a very rare circumstance. Otherwise I need help getting rps started due to a very painful disability that causes a burning sensation throughout my body. Only my very close rp partners I have history with understand this.

I was wondering, if you would, reblog this if you understand that a disabled rper has different needs depending on their day, energy level, spoons required, and you’d be willing to accommodate them. I really don’t see people willing to do this very often so please, awareness is awesome. 

I hate to ask...

But I really need help.

I have begged and borrowed what I can from family, but I still need approximately $1500 to get me and my cats safely to Idaho. This would cover food and medication for the 3 of us until mid-September (it is much more expensive to move in the month of August) as well as the cost of moving what is left of my belongings. I am the type of person who hates to ask for help, but I am truly at the end of my resources.

🍊✨INSURANCE HACK! 🍊✨

All too often with an invisible illness we are dismissed immediately. “Oh, but you don’t look sick,” they’ll say while judging us, simply a book by its cover, not taking the time to think about the wounds and scars we carry internally or in some cases simply a layer of clothing away. 💉💊

I mean, what does sick even look like? Let me know exactly what you think and I’ll conform next time. You know? Excuse me for attempting to be strong, positive and to reflect that on the outside, man. 😶😬😕

Moral of this story, if you’re ever dismissed by your insurance company for this “but you don’t look sick” reason following a prescribed and necessary test or treatment, simply follow the above protocol! Should they still refuse, take it to the U.S. Office of Civil Rights as a HIPAA violation. Fight for your rights! 💪✨

Hope it helps! Big love, Dan xx

2

I suffer from an invisible illness called Chronically Regional Pain Syndrome (CRPS) Type 1. Type 1 used to be called Reflex Sympathetic Dystrophy, but that’s a god awful mouthful so they changed and made it CRPS1.

With CRPS, after an accident (something as minor as your foot getting stepped on in the hallways- that’s what happened to me) your brain will typically send pain signals, right? And most of the time the pain signals will stop in s reasonable amount of time, but mine didn’t. In fact, the pain got worse. It used to be believed CRPS was caused by the brain forgetting how to turn off the ‘pain switch’ but now there not so sure.

So the pain got worse and it spread up my leg. Seven years later, the pain has spread to my entire left side, the bottom of my right foot, my right arm and I get horrible migraines/ facial palsy attributed to the CRPS. I suffer a 7/10 pain rating every single day. Depression and anxiety are also an issue because, duh, I’ve literally hurt almost every day for seven years.

I want to use #noshameday as a reminder to people that people can be disabled and look perfectly fine! Invisible illnesses exist. just because you cannot see something is wrong with me does not mean my pain does not exist!
#rsdcrpsangels #spoonies