It is a special occasion. No, it’s not a belated Mother’s Day post. Or, partially it is, but today is also my mom’s birthday.

Happy birthday, Mom!

My mom turns very old today. Just kidding, she is quite youthful and lovely, and you probably couldn’t (or wouldn’t) guess how old she is anyway.

Some cool stuff about my mom:

• she also has a blog, and though she hasn’t updated it in approximately forever, you should go read it if you haven’t already. It’s called Favorite Household Object, and it’s a meditation on different household objects. Click here! 
• she also writes real stuff. Like two books, one of which is about me (but actually! I mean, kinda. I was a baby, so I’m not a super interesting character) and the other of which is an anthology of trauma writing which I use when I teach trauma writing workshops. Because my mom is the expert.
• my mom has a ridiculous amount of medical knowledge which is apparently required to be a parent in my family. She has to deal with my MS, the seizures I had as a kid, Jacob’s asthma and allergies, and Ben’s partial finger amputation. She’s done IVs in our kitchen and dressing changes in the living room. That stuff takes guts. And brains! You guys, my mom has guts and brains.
• she’s the mom that you would all wish you had if you realized how much your moms suck compared to my mom.
• we steal each other’s clothes all the time. Also, the clothes I love the most are the ones she had to persuade me to even try on.
• she runs the world’s most unproductive farm: two insane dogs, four cats with very distinct personalities, and my guinea pig (who is currently living with her instead of me, cry cry cry)
• she’s smarter than everyone else. Because I said so.
• she and my dad traveled the world before I was born and lived in Guatemala, Mexico, and Thailand. She’s also lived in England, France, and Spain.
• it’s her birthday, and I wanted to do something special, and I’m in Connecticut instead of Pennsylvania and too tired to write anything coherent. I hope ya like it anyway, mom. You’re awesome! Also, I hope you like the weird vintage jewelry box I found you that says something in French that I don’t understand because I definitely don’t speak French anymore…

Happy birthday, I love you! You’re the best mom. And I don’t care I DON’T CARE clever person on facebook who said on Mother’s Day “not everyone on facebook’s mom can be the best mom” because my mom is the best. Back off with your cynicism.

Love,

Oldest Child aka Cade aka Missylou (thanksmom)

….and now for several pictures!

Mom with my cat, Nashi

Mom & Dad at a wedding

on the phone in our backyard

on the train with Ben

serious fashion model mother

whole family in BCN, 2010

with Jacob at his bar mitzvah, 2009

hiking above Barcelona, 2009

A weird thing happened earlier today. You might have noticed that over on the right side of the blog home page, I have a little area I like to call “Poll-Land” (different from Poland in many ways) that has a bunch of open polls. The one that’s gotten the most responses is the first one, which asks what has brought you to the blog. That has a write-in option.

Today, I checked on the write-in responses just because I’m curious and I hadn’t in a little while, and one of the answers to the question was a very simple “I am suicidal.”

Hmm. That stood out among the usual “Reddit,” “the west wing,” “friends with your parents” responses. (which I do appreciate, of course)

There is obviously the possibility that the response was some kind of trolling or joke or something, which I don’t find to be especially funny and hi, I (a real live person) read those responses, and please don’t say shit like that. But I’m going to proceed as if that’s not what happened because I like to think that even on the internet, people are mostly genuine.

So, to the person who wrote that, if you were serious and if you have returned to my blogland, this is for you.

First off, I am in no way trained to help you out with that! The US National Suicide Prevention hotline is 1-800-273-8255 and I encourage you to call it! They’re trained to help you out and will do a far better job of it than I could.

But beyond that, I’ve been feeling lately that a lot of the chatter on MS message boards and online communities is scarily defeatist, and if you’re suicidal because of MS (which can often cause depression) or because you think MS has ended your life, you need to stop going to those places that are populated with nonsense like that. It’s always the most pissed off people who take to the internet (like my dad on Trip Advisor), and if you need advice about how to feel better about having MS, they’re not the people to talk to.

MS has not ended your life. “Milder” MS is harder than most unaffected people think it is, mainly because a lot of the consequences are invisible. Other people can’t look at you and see that you’re dizzy or nauseous or having cognitive difficulties or exhausted all the time or that your hands and feet are numb. And they’ll dismiss you as healthy and move on. This can cause a lot of frustration and anger. I get that. But another thing that those people don’t see is how much strength it takes to let yourself look healthy and be out and about and trying to live as close to normal a life as possible. They don’t know that you have to make a million little brave sacrifices.

You’re already not letting MS ruin your life if you’re doing that. And if you’re staying at home and letting MS disable you more than it needs to, try to think about how much potential you still have. There are new drugs that are going to be available extremely soon, there are support groups, there are hotlines, there’s friends and there’s family. And if you feel like some of those resources aren’t available to you, please email me or something. Because I added in a fancy Contact Me! page. And I will get back to you ASAP.

Love and worries,

Me

I’ve been thinking for a while about writing a post on why women are terrible to each other. I think what’s been holding me back is a combination of a) fear, b) not knowing the answer, and c) a lot of negative feedback. Like, don’t I know that saying this will just provoke other women? I don’t think any of those reasons are good enough anymore. So hi. I have some thoughts. 

I’ve been hearing for many years that women in academia eat their own. And at first I thought this was just an academia thing that was weird and built out of intellectual competition, but I’ve been realizing that it’s not just academics. It’s comedy and body image and performance and social situations. Women are in constant competition with each other, and I’m really not chill with it. 

When you go to the gym with a friend and they’re trying to beat your calorie count on the stationary bike, that’s not healthy. When the comedy groups I’m in have auditions and the women in the groups are being more critical of the women auditioners, that’s not really okay either. (Full truth: I have participated in those situations too. I’m not good at this stuff either.) 

Why are women in constant competition with each other? I think my basic theory on this is that women are underrepresented everywhere. In politics, it’s extremely evident. Women make up just 18% of Congress. And in college admissions, more women than men typically apply to schools, and the same number of women and men are often let in, because many schools want to keep the ratio as close to 50/50 as possible. I have a lot of feelings on that ratio, but moving on… Anyway. I think that because women are so underrepresented, there’s a constant feeling (even in arenas where the ratio is 50/50) that there are only so many spots for women and we just have to push each other down to get those spots. That’s fucked up. This desire to be smarter, funnier, skinnier, and prettier than all other women is natural in a sense (natural selection! don’t be the weakest!), but the way that it’s manifesting isn’t healthy. Instead of women wanting to be the best that they can be, just for themselves, most women seem to mainly care about being better than the women around them. Can you go to the gym more than your friends? Can you be in more extracurriculars? Can you get better grades? Is your significant other prettier than theirs?  And how much sabotage are you willing to get into to get to that “better than her” spot? Based on what I’ve witnessed (at college, in high school, middle school, at work), it’s a lot of sabotage. A lot of this also comes from women who self-identify as feminists, and who openly blame that ol’ heteropatriarchy for all of women’s problems. And yeah, the heteropatriarchy sucks, but women are also fairly awful to each other. 

Since I don’t really expect to fix this problem, I have an alternative: help your fellow women out! But wait, don’t do it for the right reasons. Don’t do it because the more women in a given field means more equality between the sexes, and definitely don’t do it out of compassion. Do it for the wrong reasons. Do it because if you let more women in (though only the qualified ones!), you can actually prove that you’re the best. If you’re the only woman somewhere, it’s really easy to be the best woman. But once you have something to compare to, you can really show off. And don’t be the best by sabotaging those other women, be the best by working hard and striving. And then, if you’re still the best? It’ll mean more. 

(yes this is a real poster that I own) 

(previous episodes include: Ann Romney being confusing, Fox News being confusing)

So this was on the CNN front page. For those of you who don’t like to click links, “this” is a story about the first ever NBA player with MS. Which is cool! Yay, we can play sports too! (though, dude, how are you dealing with the heat? Isn’t it hot on basketball courts? There seems to be a lot of sweating)

Things that bother me though:

“Just as important as what he can do for the Mavericks is how inspirational a tale he provides.”

OH, crap, I totally forgot that the point of people with disabilities is to be inspiring to other people! If you’re disabled and just living a regular life, you’re not as inspiring as you should be (though you’re still inspiring!) but if you’re disabled and doing something special or that requires some sort of rare skill, you are an inspiration to us all! You keep going, you. No, actually, this is stupid and condescending and shouldn’t be how we talk about people with disabilities. I think the dude just wants to play basketball. That’s what he was doing before his diagnosis, and it’s what he’s doing after. Also, the team probably wants him to be good at basketball. It’s probably not as important to them whether he’s inspiring.

“It’s nothing short of heartwarming to see a player battle his way back from not just a supposedly career-ending injury, but an unprecedented one. No other NBA player has acknowledged having MS before, rendering Wright an innovator.”

MS is not an injury! MS is an autoimmune disease that causes neurodegeneration! I mean, sure, it injures your brain, but I really would not ever refer to it as an injury. He also can’t really battle anything. There’s not a cure. There is no battle. We’re not fighting the good fight out here. Also, I’m pretty sure the “acknowledged” is just to cover bases in case some other NBA player is like “Guys, I had it this whole time!” but it’s some really confusing language.

“There is no cure for MS, and while Wright also said the risk of him suffering another episode is minimal, it’s still very much alive.”

This could be Wright’s own mistake, but relapses can happen to anyone, at any time. No cure, remember? Article, even you just told us there’s no cure! He could totally have another relapse!  He might just be trying to cover his own ass so he can keep playing basketball and not be seen as a risk, but it’s an easily fact-checkable thing.

But whatever, good luck with the whole basketball thing, and happy MS Awareness week, everyone! Awareness is a neutral term that means nothing, but I’m glad that people are aware of MS. (sarcasm) (so much sarcasm)

love,

Cade

(current status: Zonked out on Zomig, alliterating freely!)

I’m feeling my MS pretty acutely, shall we say, as I’m just finishing up a relapse and am on a new drug that makes me into a zombie and also makes me have a ridiculously short attention span. I feel pretty incapable of solid thoughts and my boyfriend keeps describing me as either “glazed” or “loopy.” So, like, that’s cool just kidding. 

As such, I can’t promise that this blog post will be any better or more philosophically sound than my failure of a blog post last year! I’m sorry! You guys (dad) are really critical! With no further disclaimer other than a sincere apology for being bad at blogging, here goes.

Well, these have been quite the two years. To the now ex-boyfriend who said he’d break up with me “if it changed me,” (it being MS) it did in fact change me, for the better, and I’m really pleased to no longer be dating you. 

I hate to say the for the better thing, because I’ve read (and agreed with) so many critiques of the whole “I wouldn’t trade my disease for anything, life changing moments, blah blah blah” thing. However, it definitely did help me to grow up a bit and it made me braver. I feel like I need to be organizing these thoughts better (remember how I’m on weird drugs now? ugh). It’s list time. Here we go. List of thoughts. Screw drugs, man. 

• I recently had an argument with someone who proclaimed me to be healthy and suggested that I was letting MS affect my life more than it should. This someone was definitely a medical doctor and needs a serious MS education, but the argument made me realize that I kind of think the exact opposite. I think that I’ve been living with not enough regard for my medical condition (a thing which is far from healthy) and I need to start making some smarter choices that reflect the fact that I have this frickin autoimmune disease. 
• I’m beginning to suspect that I can’t be an organ donor? That makes some sense, I guess. But that’s sad. 
• It would be nice if Teva (the company that makes my meds) could a) stop sending me crooked needles that I can’t tell are crooked until after I’ve already stabbed myself (because I have to put them in an auto-injector that takes off the needle cap) and b) stop trying to block BG-12 from coming out because yeah, it would take away a bunch of their business, but they’re making a flawed product and a lot of us would really rather be on a pill than on an injectable. 
• I’m as per usual grateful to the people in my life (housemates, siblings, family, friends,  a cappella broz, stand-up folks, tha boyfriend, professors, etc etc) who make things so much easier and more fun and stick up for me and hang out with me when I’m sick and are just awesome people. Special cred to Will Dubbs who came up with the term Scleversary. 
• When I’m off these drugs which I hate, which will hopefully happen soon, I’ll write something more intelligible (and hopefully intelligent) and it’ll be great but for now these are my thoughts. 

Love and TWOYEARSDOWNLEZGO,

Cade

(this is me and the boyfriend trying to take a picture together and my baby brother photo-bombing hardcore) (happy blog post to all and to all a good night) 

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Investigating the link between a common virus and Multiple Sclerosis, or the dangers of adolescent mononucleosis

It has become evident over the past several years that there is some link between the Epstein-Barr virus (EBV, the virus that causes mononucleosis) and multiple sclerosis (MS). One study in 2009 even found that 100% of the MS patients in the study had been infected with EBV at some point prior to their MS diagnosis#. But what, exactly, is the link between the two? With a virus as widespread as EBV and a condition as (comparatively) rare as multiple sclerosis, is attempting to find a link between the two realistic? In a recent paper, a lab in Italy details their findings related to the linkage.

Multiple sclerosis is a neurodegenerative autoimmune disease which can cause seemingly any disability. Approximately 400,000 Americans have MS#. The disease is characterized by a loss of myelin, the sheath which covers nerves, in both the central and peripheral nervous systems. While other factors, such as vitamin D deficiency#, are strongly linked to the onset of MS, the percentages suggesting EBV linkage are too high to ignore. EBV, according to the official CDC page, is an extremely contagious and common virus, with up to 95% of adults between the ages of 35 and 40 in the United States having been infected at some point. It should be noted that the page stresses the mild nature of the virus and does not, at any point, mention potential linkage to multiple sclerosis. The page also has not been updated since 2006#.

The key to understanding why the EBV linkage is relevant to MS despite the differences in incidence between the two conditions is the type of EBV. EBV does not necessarily always result in infectious mononucleosis (IM), but when it does, and when IM occurs in late adolescence or early adulthood, the risk of MS increases between two-to-fourfold.

The lab in Italy, in its efforts to research the linkage, identified two elements (based on prior research elsewhere) caused by the EBV that could be viral sources of MS. Both come from the W family of human endogenous retroviruses (HERV-W). One, known as the MSRV element (MS-associated retrovirus) (to be referred to as MSRVenv from now on), was found in the cells of MS patients and purified for use in studies. The MSRVenv element, once extracted and purified, exists as a free virus-like particles. The other element is an element located on a chromosome which does not form virus-like particles. The product of this element has been named syncytin-1. Syncytin-1 and MSRVenv, despite their differences in particle forms, share >94% of identities at the RNA level.

MSRVenv and syncytin-1 are both pro-inflammatory and capable of causing neuroinflammation, neurodegeneration, and alterations to both the immune system and stress responses. All of these suggest that either or both of these elements could trigger multiple sclerosis.

Corroborating this thought, MS patients whose spinal fluid tested positively for MSRV presence typically experience a worse prognosis, faster disease progression, higher mean disability status, higher annual relapse rate, and higher incidence of progression to progressive MS (from relapsing-remitting). Similarly, patients who first presented with optic neuritis (an inflammation of the optic nerve which can occur in patients with MS or can be a precursor to MS) who tested positively for MSRV presence converted to “full-blown MS” in the next 20 months after testing.

Prior studies, however, had failed to prove the association between EBV and MS sufficiently, and also had not determined whether EBV played any role in MS beyond the disease’s initiation. Thus, the lab decided to perform both in vitro and in vivo tests using MSRV and syncytin-1 to attempt to answer these questions more fully.

Based on a series of in vitro and in vivo tests, the lab was able to show several important things about EBV, MSRVenv, syncytin-1, and their relationships to MS. The most notable finding is that EBV does, in fact, activate the expression of HERV-W (specifically MSRVenv and syncytin-1) by astrocytes (glial cells).

Interactions between HERV-W and EBV in the in vitro experiments occur in cells from both the blood and the brain, which suggests that the same might be true for in vivo interactions. Based on this, the possibility that EBV activates HERV-W’s immunopathogenic and neuropathogenic potentials has become more than just a possibility. When EBV has progressed to IM in late adolescence or early adulthood, and thus become “superinfectious,” the possibility for these interactions could increase exponentially. This would more fully explain the link between EBV that causes IM (as opposed to other incidences of EBV) and MS.

What started as an improbable coincidence, then, has become a more cemented conclusion. Though EBV is incredibly common, EBV that progresses (often in late adolescence to early adulthood) to IM is less so, and the particulars of this research establish a definite link between this form of EBV and MS. Though the lab did not establish what role, if any, EBV could play in MS beyond the initiation of the disease, they did fully establish the link between EBV and MS. They also pointed out in the conclusions of their article that during revisions, their findings were independently verified by a multicentric study, making the results even more valid and important.

The medical community (and perhaps the CDC website) should thus reconsider their evaluation of EBV as mild and harmless, as MS can certainly not be described thus. It also raises questions about EBV: the CDC page expresses little concern over transmission of EBV (“transmission of the virus is almost impossible to prevent”), and offers few possibilities for treatment. It does, however, mention that a 5-day course of steroids may be prescribed to control swelling of the throat and tonsils. Since similar courses of steroids are often prescribed for MS patients following a flare-up to control inflammation of lesions, should it become common practice to prescribe steroids for all patients whose EBV has progressed to IM? Or, for possible MS prevention, would it be possible to prevent the interactions between EBV and HERV-W found in the study from ever occurring? Clearly, EBV in young adults that progresses to IM should be seen as a different and more serious medical situation than other EBV cases, and deserves further investigation and a more useful (and universal) course of treatment.

The paper summarized in this article:
Mameli G, Poddighe L, Mei A, Uleri E, Sotgiu S, et al. (2012) Expression and Activation by Epstein Barr Virus of Human Endogenous Retroviruses-W in
Blood Cells and Astrocytes: Inference for Multiple Sclerosis. PLoS ONE 7(9): e44991. doi:10.1371/journal.pone.0044991

Other sources cited (the footnotes didn’t copy-paste, so here’s my bibliography):

Laino, Charlene. “Epstein-Barr Virus Linked to MS.” WebMD. WebMD, 04 May 2009. Web. 01 Nov. 2012. <http://www.webmd.com/multiple-sclerosis/news/20090504/epstein-barr-virus-linked-to-ms?src=RSS_PUBLIC&gt;.

“National Multiple Sclerosis Society.” FAQs about MS : National MS Society. N.p., n.d. Web. 01 Nov. 2012. <http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/faqs-about-ms/index.aspx&gt;.

Hayes, Colleen E., Margherita T. Cantorna, and Hector F. DeLuca. “Experimental Biology and Medicine.” Vitamin D and Multiple Sclerosis. Experimental Biology and Medicine, Oct. 1997. Web. 01 Nov. 2012. <http://ebm.rsmjournals.com/content/216/1/21.short&gt;.

“Epstein-Barr Virus and Infectious Mononucleosis.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 16 May 2006. Web. 01 Nov. 2012. <http://www.cdc.gov/ncidod/diseases/ebv.htm&gt;.

[side note: this is also how I sometimes talk to my boyfriend because a) he's a freshman and b) I'm awful. Speaking of boyfriend, he sent me the "news article" I'm about to rant about because he's wonderful] 

“News Article” link

Isn’t that cute? Republicans and science: a match made in never. Never ever. I kind of can’t get over how bad this is. 

Right off the bat, I was super skeptical of this article because “Though still rare, pediatric MS is more common now than it was 30 years ago.” This is not really science, Fox News, because MS diagnostic tools have improved ridiculously over the past 30 years. This means that there is no way to prove that the rate has increased, since we don’t know who actually had it 30 years ago. Doctors also weren’t told to consider MS as a possibility for children and teenagers. So this is not science mainly in that it absolutely cannot be accurate. 

Moving on from there, this study completely disregards all previously known causes of MS (Epstein-Barr virus that turns into highly symptomatic Infectious Mononucleosis, 115 different genes, vitamin D deficiency) and just looks at a barely there link to childhood obesity. I kind of doubt that the link is statistically significant and I’m not a biology major anymore (by the way!), so I don’t feel like analyzing that. But like. It’s cute how this article ignores everything we know about MS and pretends that obesity is the answer. Without mentioning anything else. Like. Who are you, Fox News? 

The article also ends with “Even though pediatric MS remains rare—1.7 in 100,000 kids—parents of obese teenagers should pay attention to symptoms such as tingling and numbness, limb weakness and loss of bladder control,” which I’m just going to classify as straight-up fear mongering and be done with it. When your fat kid pees itself please make it worse and tell it that it’s probably degenerating. 

That was the meanest sentence I’ve ever posted on here and I know it and I’m the worst and someday over the rainbow I will write a blog post that doesn’t center around me being condescending to a website when I can’t even maintain my own blog all of a sudden? 

More blogging to come is what I mean. Good to be back. Hope you’re having a Sexy February. Here’s some blue ice cream (!!!) to get you started. 

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 12,000 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 20 years to get that many views.

Click here to see the complete report.

(Come at me, bro)

Probably not. I told ya it would be embarrassing, Michael.

1. If you think I’m faking my MS to get your attention, I don’t want to date you. Because a) I’m not, and b) I’m kinda smart, and realize that there are many diseases that would get more attention than Relapsing Remitting Multiple Sclerosis: the disease that makes you feel worse than you look and also c) if you have the capacity to think that about another person who you profess to love, you suck as a human being.

2. If needles make you squeamish and you don’t want to hear about my medication or my disease, I don’t want to date you. If you spend all your time on the internet and don’t take the time to even google what MS is, why am I dating you? And please, dear god, don’t ask me why I feel sick today or tell me to feel better. If you’d taken the time to google my disease, or, say, ask me about it, you’d know it has no cure. The feeling better is not a thing.

3. If you think I’m the tragic heroine in the indie movie that is your life, I don’t want to date you. My feelings for you and your feelings for me don’t mean more because I’m sick. Also, a week and a half ago, I managed to open my front door into my own face out of sheer klutziness. I am not the tragic heroine in any indie movie. They tend to be more graceful.

4. If I’m interested in you because you also have a chronic illness and I think that’s suitable common ground for a relationship, I’m an idiot, and I don’t want to date you. 

5. If my autoimmune disease is kind of a downer and like you really just wanna go out tonight, you can do that, but I don’t want to date you. Not because I don’t want you to have fun, but because I can go out most nights, and it’s sucky that the one night I can’t, I’m stuck alone.

6. If you’re not doing any of these things because you’re the most wonderful, I’m probably currently dating you. Good job, me. Progress.