A Very Happy Day

Yesterday was a very happy day. Why? Well, in case you (somehow) hadn’t heard, Obamacare passed.

From CNN: “the law makes it illegal for any health insurance plan to use pre-existing conditions to exclude, limit or set unrealistic rates on coverage”

Hey. You guys. That means me. And anyone else out there with MS. We can all get insurance now.

Which is great, because my medications cost around $5,000 a month without insurance. Luckily, I’ve been on my parents’ plan so I’ve never had to pay anywhere close to that. But, not gonna lie, I was totally freaked out about what would happen after I couldn’t be on their plan anymore. How would I get a job right out of college that was good enough to get me good insurance? While many young adults are healthy and would simply not get insurance so they didn’t have to spend the money, that was never going to be an option for me.

Some thoughts I have on health insurance:

1. There are a lot of people on the internet who are talking about Obamacare like it’s some big conspiracy to get us all to buy something that we don’t need. No, this is just how civilized countries do it. I know we’re a little backward (especially here in PA, where we apparently don’t allow expert witness testimony in trials… what?) but this is good news. Universal healthcare is a good idea. People being healthy is good.

2. Our public health insurance system is a little convoluted, and I’m hoping that now that more people will be on public health insurance, the system can be reexamined and fixed. If you’re not sure what I mean by convoluted, here’s an example: A woman who is already on the California version of Medicaid, Medi-Cal, who needs breast or cervical cancer screening, must also apply to the Breast and Cervical Cancer Treatment Program (BCCTP) and then, if she also needs screening or treatment for cardiovascular problems, must sign up for a third program, WISEWOMAN. There’s no good reason for those to be three separate programs, as far as I can tell, and I spent a semester studying the whole system. Hopefully Obamacare will lead to some streamlining of public health insurance!

3. Many people seem to be upset about the “healthy” people taking care of the “sick” people. This is really bizarre to me. Health is not a permanent condition. People always ask me how I got MS, and they always seem to be hoping for it to be something that I did. They want to blame it on me (do I drink? do I smoke? do I not eat enough vegetables? do I not exercise enough? do I watch too much TV? do I get enough sleep?) so that they can have some way of avoiding it. If they can figure out what I did “wrong,” then they can just not do it and stay healthy. That’s not how it works. One day I was healthy and the next day I woke up nauseous. One day I thought I might have Lyme disease and the next day I knew I had MS. For a lot of diseases, it’s not about doing something “wrong.” They just come out of nowhere. Cancer can hit anyone. MS can too. Healthy people are not likely to stay that way, and perhaps they should be a little bit nicer about taking care of us “sick” people. Because they’re probably paying it forward.

4. People’s idea of “expensive” medical care is very strange to  me. In a class I took last semester, a professor defined “expensive” medical care as being $5,000 per year. As I already mentioned, my meds are $5,000 per month. AKA $60,000 per year. When I first tried to talk about this to some of my friends, I wasn’t explaining it that well, and their response was “yeah, but you’re not the average person.” The more I thought about it, though, the more I realized that many other people are in my situation. My syringes cost $143 each and can only be used once. I need one per day. That’s true for everyone on Copaxone. There’s probably a similar cost for other injectable medications as well, including medications for diabetics and blood-thinners. Sometimes it seems like people are mad at those who use the ER for doctor’s visits because they don’t have insurance or people who are on a lot of prescription meds that they don’t need, and think of those people as the only ones with “expensive” medical care. That makes “expensive” medical care seem unnecessary. That’s not the case for those of us with chronic illness, and I think our situation needs to be publicized and discussed. We have “expensive” medical care, in numbers too big for a lot of people to even fathom. And it’s very, very necessary.

Aside from that, apparently CNN mis-announced the results at first, leading to a slew of highly embarrassing “Goodbye Obamacare!” happy facebook statuses. I love when Republicans look dumb. Lucky for me, the Tea Party keeps talking!

TL;DR health insurance is important for sick people, and healthy people don’t always stay that way so they should be happy too. Yay Obamacare!

 

The Longest Status Update Ever

I can’t even think of a title right now. All the flustered. Things that have been happening:

  • I just got back from NYC where I (with my brother Jacob for all except Item 8) (with my Dad for the whole trip but only Item 9 on this list)
  1. Went to a diner
  2. Purchased a one-use camera (they still exist!!)
  3. Went to StubHub offices (referencing a VD sketch: StubHub is the shit!)
  4. Went to Crumbs
  5. Took a wonderful nap
  6. Went to a Childish Gambino concert (!!!!!!!!!!!!)
  7. Overheard: “yeah, I like.. just saw this concert… Childish Gambino… he’s a rapper from New York” ….wow.
  8. Had a Brooklyn Breakfast Brouhaha with one of my favorite couples, Elizamon (aka Elizabeth and Solomon)
  9. GTFO-ed
  • And then stopped in Princeton where we…
  1. Had lunch
  2. Went to a yarn store 
  3. Wandered
  4. Were glad that I didn’t get in there (lol) because it’s way too fancy and preppy. My thoughts on Wesleyan compared to Princeton: “At Wesleyan you can’t tell who’s rich because everyone’s in a competition to see who can dress the most homeless” … aahhh hipsters
  • And then we drove home
  • And then I checked my email for a while because I had not had internet
  • And then I remembered how much I love bullet points and numbered lists
  • And then I wished I wrote a fashion blog so I could show you guys the dresses I got at Urban Outfitters sale last week in DC
  • And then I judged myself super harshly for the above thought 
  • So really, you don’t have to
  • And then I checked the results of my newest poll (in the sidebar) and saw that three people voted that they read this blog Because They Have MS. 
  • And then I was quite happy about that situation. Those three people: talk to me! Comment! Hi! I’m Cade! My blog posts are often better than this one. 

Jack Osbourne is Not Dying

…and other common misconceptions about multiple sclerosis!

If you happen to go to the grocery store and peruse the magazines, you’ll notice that the cover of the current issue of People is the story of Jack Osbourne’s very recent MS diagnosis. (here‘s the version that they put online, very abridged)

Um, to the writers of People articles, do you get your medical information from the 1980s or something? Just a few quick quotes from their terribly researched article:

“..symptoms could flare up as seldom as every several years, though they usually grow more frequent and debilitating as a patient gets older” 

“MS usually begins with symptoms that come and go. It typically progresses over 15 to 20 years into a more debilitating form that leaves some in wheelchairs.” 

“MS attacks the brain, and in its relapsing-remitting early phase, which Osbourne has, causes fluctuating symptoms.” 

-and most wonderfully, from the cover “‘I won’t let my son die’ Sharon and Jack Osbourne on the diagnosis that has the 26-year-old fighting to save his vision, his future and his life.” 

To clear up all the misinformation that you guys just read: MS no longer necessarily progresses, patients diagnosed today with relapsing/remitting MS (RRMS) typically have a 25% or less chance of ending up in a wheelchair, and um, RRMS is not an “early phase” for some more horrible version. People, you suck.

But Jack Osbourne, man, you rock. Here are some better quotes (which amusingly contradict all the crap that People is trying to tell us in the exact same article):

“Right now am I going to be in a wheelchair? No. But if I don’t take care of myself, who knows.”

“There’s no rhyme or reason. That’s the worst part. You can go to bed feeling fine, and you can wake up and your leg might not work.” 

“I think within the next 20 years they’re going to have a cure for this.”

“I think when people hear that you have MS, they think, ‘Oh, I’m sorry, your life is over,’ but my life is far from over”  

So I’m currently tweeting at Jack (I am really bad at tweeting) and hoping that he’ll click over to my website, because I wanna be MS friends with him. Jack, if you clicked my link:

Hi!

Do you want an MS friend? I’m pretty low-key. I have Clay Walker’s phone number and didn’t give it to anyone. Also I was the flower girl in Ethan Hawke and Uma Thurman’s wedding and I haven’t even sold the dress on E-Bay. So I’m probably kind of trustworthy. The things you said in the article were super-cool, sorry that People writers are douchebags who don’t even know to wikipedia a disease before they write about it. Contact me in some way pretty please! We can try to figure out what Race to Erase MS even is (since it’s not an actual race) (with that name it should clearly be some sort of walkathon!) and talk about Copaxone. I’ve been on it for over a year now, gross.

Thanks and Vitamin D to you,

Cade

Oh, and uh, People? MS doesn’t kill you.

10 years later

Recently (a week ago) we [verbed] the ten year anniversary of my aunt’s death. Observed? Celebrated? Avoided? Felt? Got bludgeoned over the head by…? Verbed. Definitely verbed. I don’t really have any idea what ten years typically feels like because I’m only almost twenty, but it felt long and short at the same time.

The problem with things you deal with as a kid is that you don’t remember dealing with them. So you don’t remember what you should feel or think.

These are some old pictures of Aunt Kathryn I thought I’d share. This is when my family (pre-brother era) visited Aunt Kathryn and Uncle Tim in London and we went to Paris together. The last picture is of the lilies we got for her anniversary, they’re still going strong.

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First Floor Fanatic

Hey again interwebs,

I’m fairly bad at predicting what I’m going to want to write about. Actually I think my brain rebels against it. Every time I’ve said I’m going to write about something, I’ve turned around and gone to pretty much the opposite of that topic. I don’t know what’s up with that. Consider this my apology for doing it yet again.

Today what I want to talk about is accessibility. Accessibility is a really big deal, and I think a lot of people are really used to buildings being accessible in the US. Probably because that’s how it should be? Yeah, that. I’m fairly used to seeing ramps and elevators. It’s a good thing.

Wesleyan doesn’t seem to agree. Wesleyan Students for Disability Rights (WSDR) founder Allegra just emailed our listserv asking for thoughts on Wesleyan’s accreditation self-study in regards to disability, and here are my thoughts.

In the accreditation self-study, Wesleyan says “Limited funding, steep topography, and numerous historic buildings challenged the University’s ability to satisfy accessibility needs without compromising the historic character of the campus.”

I love Wes and everything, but I didn’t realize our semi-shitty classroom buildings were so “historic” that we couldn’t possibly add a couple ramps and elevators without “compromising” them. And ya know, those works of art that are the Foss dorms probably couldn’t be contaminated with wheelchair access either. I think it wouldn’t be a big deal. I think the more honest answer is the “limited funding,” since it’s becoming less and less of a secret that Wes is a bit strapped for cash (need-blind? What?).

I decided to do a little bit of lazy “research” and found that 25 of Wesleyan’s buildings are listed as “first floor access only” (sometimes worded differently than that) on their disability accessibility map page thingy. And not every building is even listed. Including my house, where not even the first floor is accessible. That’s not awesome, Wesleyan. First floors are usually not all there is to a building. Classes aren’t always on first floors, our friends’ dorm rooms aren’t always on the first floor, that art show we want to see or lecture we want to hear isn’t always on the first floor. This is a little bizarre.

I’m not affected by this right now in that I’m not in a wheelchair.* In fact, I’m pretty sure that no current Wesleyan student is wheelchair-bound. I don’t really think that’s a coincidence. I think that if you’re a student looking at colleges and you’re in a wheelchair and you come to Wesleyan, you’re probably going to look around and realize it’s not the place for you. And that means we’re losing people who could be awesome members of our community.

I don’t know if other colleges do it better, to be honest. But I do know that Wesleyan is an awesome place that I love a lot, and I wish the community could hold itself to a high standard of accessibility and acceptance of disability. (Kinda like we do for the LGBTQ community, do many colleges have this going on? Didn’t think so) And let everyone get to WestCo wine and cheese.

 

*but the cool thing about MS is that I could be in a wheelchair at any moment (plot twist!), and if so, I like to think that I’d be able to stay at (and still love) Wesleyan

What To Say When You Don’t Feel Like Talking

Good afternoon, internetfolk. I don’t really feel like talking about much today so I thought I’d introduce you to one of my favorite poets. His name is David Bardaji and he was in my graduating class in high school. He’s secretly a fantastic writer. I have two of his poems because I published them in my high school lit mag, and I thought I’d post one. Do yall like it? Want to see the other? Let me know!

Tell me what you want to hear
It is what I think but fear,
Allow me to question if it is what we’re meant to be
Do I want to reach that apple in the peach tree?
Do I want to come down from the sour cloud,
To open wounds while I count delicate hairs in your eyebrows
Do not hide them under the pores
Their presence will not disturb me, of this I’m sure
Do not put on a mask to sleep
So when we awake I’ll taste you sweet.
My apple, you impregnate your taste up high
Don’t refine your pulp for when the rain falls from the sky.
Twinkle, my love
Shine but do it above
Let me stare
But remain as a prayer
Do not let me make you fade
I touch you but the splendor becomes opaque.
Mermaid your voice sounds like a celestial chord
But I’ll tie myself to my boat, travel to the horizon, and pray to the lord
Please do not let me learn how to play your vocal chords
It will only shatter my glass thin soul and bring me back to black blinding horror