Chronicles of Life with Multiple Sclerosis
Honduran teenager Luis Cruz has used his electronics and programming know-how to create a new homemade eyeball tracker. The device allows users with motor disabilities to enter text into their computer with eye movements as opposed to keystrokes.
To read more please click the link below:
oh when academia and your life come together to make you want to cry.
Just don’t let them screw you out of academia (financially, emotionally, etc).. cause we need people in there that really get it.
How to my fellow spoonies blog? More specifically, what I am asking is where do you put your laptop (if you’re using one). Putting it on my lap only lasts for a few minutes before the pressure it puts on my legs is too painful (even with a pillow added), and putting it beside me is kind of awkward for my back (although it’s better than the knee pain, so this is what I currently do).
This is a good one. I’ve been fighting with my desk and my body to find the right set up. My eye sight is goes in an d out so thats something I considered and used the change savings jar, a coupon, and open box refurbished area, and got myself a larger monitor.
I have the same issue with my legs. Can’t have it in my lap, can’t sit that way for more than a few minutes, and with numbness some days I worry about burning my lap heh.
Anyway, I live in a small space but I try to have “easy to move to” set ups by the bed for crappy days, at my desk for working, and by the couch (for that half way health day when sitting at the desk is too much but I don’t want to get in bed).
I have a few suggestions.
1. at a desk Raise the laptop to eye level, use a wireless keyboard/mouse and have a comfy (as comfy as possible) chair.
If you have a desk set up, find a cheap bluetooth/wireless keyboard. used one online (I got one at goodwill too. In fact, its yours if you want it.. mac keyboard). Put the laptop that raises it and the screen to eye leI have one of those locker shelves you can get for cheap at rite aid.. it fits across it. Its something they suggest for all desk workers because hunching over is bad for you (and extra bad and painful if you have chronic illness issues). With a laptop that puts the keyboard and mouse out of reach. So I got myself the bluetooth keyboard and a wireless mouse (I have a macbook so didn’t want to use up the USB port and this keyboard is awesome cause it has 3 buttons each for a divice. I can’t press a button and respond to a text with the keyboard and only have to lean over to hit send! WIN!). Not sure what sort of laptop you have but If you have the funds and prefer a trac pad I know mac sells a wireless keyboard with trac pad.. Im pretty sure they have it for PCs too (check newegg.com)
ITs nice because you can store things under or in what you use to raise the laptop. you can get creative with it too. It allows for less reaching, hunching, and (if you have leg issues like me) you can adjust your legs constantly without effecting your set up. A good chair is also a great plan.. but again.. all is expensive so get creative!
2. even in bed/couch situations I say wireless mouse is key
awkward positioning wil happen somewhat but if you aren’t reaching up, over, to the side to scroll when reading then you can save yourself some pain. you can try to get a good placing for the laptop but no matter what you’ll have less ability to adjust yourself as needed if you have to move back every time you want to scroll down tumblr. keyboard helps here too. IF we’re talking night time well.. I dunno about you but I’ve been known to fall asleep with several remotes, a mouse, a keyboard and what not snuggling up to me all night long. People that judge that are just jealous.
3. Bed Tables
I’m not a fan of the over the lap tables. I tend to get numb/shooting pain, uncomfortable pretty quickly in any position. I need to be able to move myself and even the really tall over the lap desks cause problems. My apt is small so I have to have a bedside table that I can move, smoosh down, etc. I wouldn’t say mine is ideal but its on wheels and I can use it in another room (though I don’t really). Theres one I saw recently on amazon that goes between your mattress and boxspring and swivels! Still might not be directly over the bed like you want (unless you’ve turned 30 and downgraded to a twin due to space issues hah) but you can easily move it away or tilt it if you want and if you use the wireless mouse (and keyboard for typing) it seems like a win to me. Also seems pretty easy to store. here are a few links
These are all pretty expensive. Oddly places like Walgreens and rite aid have these throughout the year for cheaper.
Hah anyway, that sa long post! I hope it helps. Hang tough!
Chronic Illness Fist bump
Of Hairbrushes: Oh hairbrush, why must you mock me? Some mornings it is you who I blame for the large pieces of hair that fall and leave bald spots, and on the worst of mornings I cannot pick you up to even try to comb through my hair. I don’t think anyone hates their hairbrush more than a girl on methotrexate.
Of Parking Spaces: “You aren’t in a wheelchair!” - Everyone Ever
If I had a dollar for every time I have heard that exclaimed as I climbed out of my car I would probably be able to buy a couple hundred wheelchairs.
My disease is invisible. Yes, you heard me correctly, invisible. Sadly that isn’t as cool as it sounds. My immune system attacks itself. What does yours do? (I’m still waiting to be recruited for the X-men) But because pain, bone damage, fevers, inflammation, and chemo are all invisible not many people realize that internally I’m a walking war zone.
I’ve considered several remedies to this situation. They include but are not limited to:
1. Writing “DISEASED” in sharpie on my forehead.
2. Joining a leper colony
3. Punching anyone who questions my health
In the end I’ve just gone with ignoring most people. But I digress. Back to parking spaces.
Yes, I have a permanent handicapped tag for my car. Yes, sometimes I use it. But I always take several things into account.
1. Are there other spaces reasonably close?
2. How full is the parking lot? / Are there likely to be a lot of elderly or other disabled people at this event?
3. What is my pain level?
4. Will I physically hurt myself if I try to walk X amount?
I don’t take this for granted, and I’m not lazy. </endrant>
Of Books: I am a bookworm. A nerd. A geek. A book freak. By now I should have a gold library card. (Like those Starbucks cards.) But there is one book that I have searched for, yearned for, begged the Gods for, and I still haven’t gotten it. The closest I’ve found is “The Fault In Our Stars,” by John Green.
But what is this elusive book, you ask? I’ll tell you. Listen closely. I want a book that tells it like it is. That doesn’t glamorize my illness, that doesn’t make it seem like a romantic journey, or an inspiring story, or even a narrative that brings about pity. But I want it to also include a great guy, a strong heroine, smart and witty dialogue and maybe even a few Firefly references.
Is that too much to ask? (Alright, I know the answer is yes.)
Young adult fiction often revolves around the idea of self-insertion. If not as the main character, at least into the world of the story. From the books obviously written to cater to this adolescent desire (Twilight, anyone?) To the classics that we all love to be a part of. (Harry Potter, Narnia, Hunger Games) There’s nothing wrong with this wish, in fact it’s healthy! And who can say that they haven’t inserted themselves into a world or character? (You know you waited for your Hogwarts letter. Don’t deny it.)
Part of why I loved TFIOS was because I could identify with Hazel. Prednisone, Chemo, hospitals, unwanted pity, it’s all part of my world. And when Hazel fell in love I was happy. Because living with a chronic illness is lonely. Incredibly lonely.
Sure I can identify with many other heroine’s, but not in the same way. I want a book where the character deals with the same struggles I do. And I don’t want them spoon fed to me through sugar coated romanticized sap. I want a story about a girl who is beautiful despite her bald patches, who is strong even when she can’t get out of bed, funny, witty, smart, and who finds a guy to fall in love with who understands the struggles she faces. A guy who isn’t afraid of hospitals, who isn’t afraid to hold back her hair when she’s puking after the methotrexate, I want a happy ending for my story.
And that my friends, is my selfish teenage wish.
Beautifully Disabled is happy to say that Disabled Beauty Tyla is going to Texas to get her new service dog!!! Then she will meet with Disabled Beauty Sadie and Disabled Beauty AyreBlossum. We’ll post pictures of a big Disabled Beauties meet up. But until then, keep submitting pictures, keep reblogging, keep the awareness, share the love.
This pretty much says it. I was recently told by a friend (who I love and was being honest and thus gave me the motivation to get to the doctor asap) that I don’t look fine. huh. That makes you sad too. The judgments and assumptions and internal wars within the world of being disabled is BS and I will forever be reblogging and hearting posts about these things, even when I look extra sick to the world of able bodied people.At the same time, much like people that assume I’m xyz ethnicity based on the darkness or lightness of my skin.. I don’t always assume malicious intent. I just try and respond with patience and information whenever I can.. ya know.. whenever I am not wanting to throw things at all humans that cross my path (so rarely hah).
I wish your to-do list would disappear when you’re feeling your worst and the cognitive fog is like a white out blizzard. Or maybe I just wish I knew how to stop trying to do things when I feel like my brain is suffering from white out conditions. heh. I never learn my lesson and I always try to do things anyway and it always ends up just like it did tonight: I fuck everything up 1000x more than they were and end up creating tons more work for myself and/or ruining something I’ve been working on forever. oops. heh.
Granted I’ve been in a steadily worsening flare for 3+ months now but I should clearly be demanding steroids not just “pushing through” in ways that only lead to further stress, disheartening events, and later worse symptoms. Thats just stupid (I’m winning at stupid!). Seems that in this state even the good things go wrong.
Tonight my attempt to save my portfolio, after what I realized (even in mental haze) was not just *my* malfunction but actually my back up drive failing, ended in disaster. Not only are my back up files gone but I managed to not save but delete the entire wordpress site and the msql database associated with it (aka everything). I tried restoring it but dreamhost says there are no backups to restore from. Thankfully I got some text back from the wayback machine but really thats sorta crap without the dv files. I can reshoot images of my more recent sculpture work.. but my senior thesis from emerson (actual 16mm found footage spliced together then digitized with found audio) is not so easily retrieved. I don’t have the equipment to digitize again.
I’m so pissed at myself since this was all in an attempt to back up and update my portfolio so I could apply for an open auxiliary position at a co-op artist studio near my home. I thought it would be a really good thing for me, motivate me to get involved, have some accountability, have the ability to show work in a physical setting. heh oops.
Add to that the fact that I’ve been on the phone with SSI, federal and state, for about 8 hours a day for the the last 3 business days (and will be again starting tomorrow) re: a potential job. The people I’ve been doing side work for, that have been paying me via pay pal, really like my work. They have a new investor and he wants to make it official (despite my protests that its more complicated for me than that) by hiring me and giving me steady hours. Theoretically? AWESOME. They like me! they really really like me! For a workaholic like me its a dream come true!
Well, seems that even if I find a job like this, that lets me work 10 hours a week with the flexibility of working when I feel capable (cause I can’t do steady hours ), the net 400 dollars a month (thats 10 dollars an hour before taxes so wouldn’t actually be 10 dollars an hour) disqualifies me from disability income and reduces my health benefits by 10 fold.
I don’t even know what to say to that. I guess I should be grateful. I mean, that extra 400 dollars a month (if we pretend it is actually 400 dollars since in reality taxes will make it at least 1/3 that if not less and I love taxes don’t get me wrong) would put me at 1100 a month which clearly means I’m rich and don’t need any help! I should be able to support myself on that, pay for food, rent, utilities, gas to get to and from what are at least 2 doc appointments a week, feed my tortoise (or should I not be allowed to have a pet even an emotional support animal), all easily even if my monthly copay for copaxone goes up into the $100s and its just one of 10 prescriptions I fill every 28 days. I don’t need to eat anything other than ramen noodles, clearly I shouldn’t expect to have internet or TV now that I’m chronically ill (despite the fact that its the reason I’m homebound forever). These are luxuries I’m feeling far too entitled to. If I can try and pay for those things then I should be able to have a full salary and work 9-5 even on days I can’t see or walk! Its clearly my fault that the 6 years I worked at a research institute right before my symptoms got undeniable didn’t pay into the proper federal funds that would allow it to count towards regular disability. It doesn’t matter that I’ve been working since I was 15
:::bitch-rant-moan-im still pretty damn privileged-still grateful-also stil lbitchy::::
Anyway, its been a long week, 3 months, year etc heh and tonight I feel like throwing something and yelling FML. I’ll get some perspective back tomorrow.. It could be so much worse and so many people close to me are dealing with so much bullshit I am humbled by them and feel guilty even bitching a little.. cause really this isn’t “new” per-say. Its my life. Forever and ever. Still, I just feel like I’m going to be “head barely above water” forever simply because I had the wrong job and got diagnosed at the wrong time. I hate feeling stuck and I hate when my attempts to pull myself up by the bootstraps end with me on my ass feeling stupid and useless. Eh. Lamesauce.
Anyway, hope I wake up with perspective (that is not induce by any traumatic incident) tomorrow. If you managed to read this far by accident, masochism, and/or boredom well.. I can promise you this: you can all feel safe knowing that I’ll be on the phone with gov. agencies for so long tomorrow/this week that I won’t have time to post long whiny incoherent posts like this for at least 5 business days. :-D
PSA: IT IS NOBODY’S BUSINESS WHY SOMEONE NEEDS A SERVICE DOG.
ESPECIALLY NOT AS THE OPENING OF A CONVERSATION.
And yet EVERY TIME I go out in public, SOMEONE walks right up to me and asks if he’s a service dog (READ THE VEST) and then asks WHAT I NEED HIM FOR.
And I just.
WHAT THE FUCK IS WRONG WITH YOU.
THAT IS INCREDIBLY INVASIVE AND RUDE AS HELL
I have the dog because I am disabled and that is all you need to know.
I don’t know you and I owe you zero explanations about my life, do not get all weird if I tell you that it’s none of your business.
It’s like walking to someone with a severe burn on their face or a missing limb and going GOSH WHAT HAPPENED.
These last few months have felt, in many ways, like the period at and immediately after my diagnosis. In a flare, feeling out of control, and feeling as though all attempts to pull myself up just fail and lead to further falling out of control. I realize this is the roller coaster we all ride every day. The schematics of it are different for everyone but we’re all on it and can’t get off.
Lets use that last sentence to segue into my thank you. Thank you all for reading, not reading, liking even though you think I’m crazy, liking because you think I’m crazy, liking despite my heavy handed metaphors, not being horrified by incredibly lengthy responses to your posts even though you don’t know me, hating my responses but still sharing your experiences with the internet - universe, reading and never responding to anything ever, simply understand my posts and/or the ones I repost because I relate. All of these things collectively or separately. Thank you.
Who knew how helpful a hashtag could be through all of this. Reading things that I can relate to, meeting people nowhere near me that have gone or may be going through things I am or similar to is everything. Having a place I can vent and label and send out into the universe for a simple “like” or “favorite” of understanding has helped in ways that not even the best of friends can.
when I can’t even manage to write an email, don’t know how to express what I’m feeling, I can some how sign on to tumblr (and twitter), read some posts, and feel less alone.
Thanks. All of you are my inspiration.