Had last date with plasma exchange. It was a bittersweet break-up but we knew it was best to discontinue.
Dad was able to come and experience some of my therapy this morning. I have been walking well with my forearm crutches, today 350 feet. These will mostly be used for around the house and short visits. I was fitted for a wheelchair and this will be used for longer distances.
I’ve received quite a few emails of hope and encouragement and stories and I thank you; I will cherish them forever! I will also respond tomorrow when possibly I’m not so tired. (:
I can barely turn my head to the right, nor can I tilt it down. I thought it was on the verge of calming down but it’s starting to spread down my back and into my right shoulder. (said shoulder also feels like it’s rolling on freaking gravel when it moves. jesus. fucking. fuck.)
AWESOME because I don’t need to look down at my books another 12 hours today to review and then take this stupid chem test.
God damn it I need the money for the PT I’m supposed to do to either resolve this or justify the medication strong enough to control it. Oh my god this hurts so much, and heat/ice aren’t helping… neither does the Meloxicam combined with acetaminophen. Jesus.
When I'm wrong I'm really wrong…and yeah I was wrong..
So last night I got very frustrated about the phone calls from people I barely speak to who were calling to inform me about Jack Osborne being diagnosed with MS. I suppose in many ways the real frustration here was the repeated “excited” sounding calls that involved people saying things like you’ve got a celebrity illness. Ugh. I’ll get back to that in a second round of this post but first the important part: I am an asshat.
Here’s the thing, I was pissed at those callers, made assumptions about an industry I know little about, and did no research when I went on that long ass rant. They didn’t teach us much about high budget film shoots when I was in film school hah so I was just basically talking out of my ass yesterday about health insurance that was not at all the issue in Jack Osborne’s case. A very smart friend of mine dropped me an email to explain the issue I was totally missing. I hope said friend won’t mind that I include her explanation here since it explains in detail a whole aspect of advocacy I hadn’t even thought of, being brought to light by this issue:
*The insurers on a film take out bonds on all talent appearing in films to ensure that they will be physically available for the duration of the movie/reshoots/etc, and this bond covers the cost of the production, should they suddenly not be available. It’s not to cover health costs. It’s also why you sometimes hear stuff about actors with addiction problems being uninsurable or not getting roles due to their drug use. It’s the insurance companies that don’t want to take the risk. There’s no way that they could personally cover the bond on a film, unless they put up part of Ozzy’s back catalogue for it.
But basically, it’s an issue that will hopefully lead to awareness when it comes to ADA violations and make it easier for [people with disabilities] to work. Right now, stuff like this is why able bodied actors are doing crip drag more often than disabled actors getting hired. So regardless of how frustrating and shitty it is now, it can eventually lead to greater visibility, acceptance and aid for everybody.*
This was a little mind-blowing to me (my stupidity that is). When I think about ADA violations I think about office jobs, building accessibility, access to meds, and debt etc etc.. why is that all I think about? why don’t I think about those same issues in the entertainment industry? pretty naive and narrow minded of me. Anyway, I hope this was enlightening (either the info or how I’m ignorant and pissy). More on the other half of this later :)
been planing a post to reintroduce myself to the tumblr community after a long hiatus and some self reflection… But while I was working on writing that.. I got several phone calls that pissed me off. So now I will bitch about this to all of you… sorry.
How many of you MSers have received calls from friends/family to let you know that Jack Osborne has MS? I’ve gotten 5 in one day. Some with just the fact of, others telling me that he said he was kicked off a film shoot because he’s Uninsurable. Well? This pisses me off quite a lot. I don’t wish this diagnosis on anyone, celeb or not. But let me be the first to say being “kicked off of a film shoot because you’re uninsurable” as the child of TWO celebrities? doesn’t elicit sympathy. To me that sounds like your fam can pay for that damn insurance while you make a fuckillion dollars an hour, and even if they tell you you can’t make that fuckillion dollars an hour at the moment you will in the future or you’ll sue in response. So, Im glad you’re bringing attention to the disease, but don’t act like you can’t survive without the “insurance” you speak of, that you can’t afford a lawyer to sue on behalf of yourself and the laws the ADA has so kindly provided us (mostly the US that can afford a lawyer heh). Most of us? can’t even imagine that ability. So sorry. I don’t feel your pain. Why should this kid having MS lead to an emotional response from me? I mean, it sucks for everyone but after posting here, reading message boards etc, I’ve met/read a ton of blogs and people who have MS and whose life experience elicit a real genuin emotional response from me. I’ve encountered the stories of a ton of people I respect and who leave me full of admiration, none of whom have been interviewed by or whose blogs have been rebroadcast on CNN. All of the folks on tumblr and on MS world, are the real interest to me. All your struggles, understand, experiences, really leave me humbled and grateful for your openness.. they have changed my outlook on life and can commiserate with me when I just want to announce that things suck and I need to get that out. When it comes to some celeb kids.. politicians wive… all those folks…I’m sorry you are part of our club, I don’t wish that on anyone, Jack Osborne or Anne Romney, you seem like a great folks but I don’t feel full of sympathy, empathy or understanding.
You and I may share an autoimmune disorder but thats where our similarities end. LIve on an income of 800 dollars of state funds a month (and pay off debts at the same time) and worry about where your food is gonna come from each day, see your whole future destroyed and watch your blood family go on to their vacation homes, deal with their step children, etc while you wonder if you have a place to live… maybe then I’ll feel bad for you. Right now? I just hope your diagnosis can help us all get to a cure, I hope the CRAB meds help you out ASAP and that you never have to experience some of the crap so many people here have. I’m glad you have support from your family and the media and I can’t lie, I’m mostly jealous of that. I hope you stay in remmission that you find power in voicing your life changes. I hope you and your family find power in that. I wish you well, but I don’t wanna hear about you while I’m blind in one eye from the heat and humidity in my apartment. I just don’t want to, especially from people that call me only when they hear something like this in the media. This probably makes me an asshole.. eh… I’ve been called worse. So go ahead. Hate me if you will.. judge and unfollow… just don’t call me to tell me about it ok?