I Write Less When I'm Happy

I am quickly closing in on another birthday. And another prime number. But, for the first time in a long, long time, I am feeling...

I have a hard time identifying what I am feeling. Hopeful? Energized? Could it be? Could this be what it feels like to be happy?

One thing that is contributing to this foreign sense of smiley-ness is that I am loving my job. I love it. It engages every part of me. My analytical side, my creative side, and even my anal-retentive side. I get to make art and checklists. I get to work along side some truly brilliant people, building things for hugely important companies.

I don't remember ever liking my job like this before.

And one thing I get to do a lot in this job is write. Lots of different writing about lots of different things. I do think that is the source of my extended blogging vacation. So I owe you all a nice, long blog post.

And I will continue to owe you that. But here is one big brain dump. We can unwind it together later.

Since we last talked, I have been to San Jose, New York, and Orlando. The first two for work (but I got to visit friends in both places!). The last was for a family vacation. Which was both hugely fun, debilitatingly exhausting, and the last time that I will ever cross the Mason-Dixon line between them months of February-December. So I owe you a travel blog post.

Here is a little list of the other posts I owe you, complete with an executive summary of each:

Gay marriage: I am so happy that--for once--this Supreme Court is on the right side of history.

Obamacare: Those Supremes were on a roll!

Confederate flags: You don't have to agree that displaying this flag is racist. But you have to admit that it takes a very special type of asshole to want to fly the flag of the losing side.

Twitter improving my writing: Something about summing up a thought in only 140 characters is really making my writing tight. Twitter is a bit like a puzzle. And it is also an exercise in letting go the rules of grammar, if only for 11 seconds.

My new best friend Rosie O'Donnell: Anyone who is a woman and anyone who loves a woman should find an hour of time to watch her HBO Stand-up Special. She talks about the symptoms of a heart attack for women. I absolutely know that she is saving lives with this information. Oh, and she follows me on Twitter.(Spoiler alert. Rosie does not yet know that we are besties. But I'm sure she will be exited about it.)

Shaving my head (Half of it, at least):  I'm trying to figure out the best way to stay cool this summer. My mother commented that I looked "tough." I'm pretty sure she meant lesbian.

Another summer with MS: It is so fucking hot. I am spending my free time shopping for property in Alaska.

The stupid fucking Duggars: I don't believe in hell. But stories like the one of Josh Duggar molesting children make me wish I did.

Harry Potter World: It's like stepping right into the books. It is truly magical.

And just so you know that my blog has not been hijacked by some spliced together version of Pollyanna and Ellen Degeneres, I am fully anticipating that my grasp on this small slice of happy will soon slip through my fingers. But, what the hell. For now? Drinks are on me.

Forward Momentum

I’m going to get a little bit political here, so bear with me.

In 1979, I was 7 years old and the world looked very much like this:

And that was the last time a US President had diplomatic contact with Iran. The end of 1979 saw the Iranian Hostage Crisis and the election of Ronald Reagan. U.S. diplomatic sanctions made a matching set with the economic sanctions that had been steadily increasing. But things are changing. The Iranian people have overwhelmingly elected a moderate politician with the hopes that their daily lives can improve if their interaction with the rest of the world improves.

It seems to be working. On Friday, September 27, 2013, US President Obama placed a phone call to Iranian President Rouhani. That was the first crack in the thaw, heard the world over.

Here is why this is important to me in the context of this blog. The Iranian people, who through no tangible fault of their own, have been shouldering the severe burden of worldwide sanctions against their country. One of the more hard-hit group of Iranian people are chronically ill. Cancer medicine is scarce. As is medication for managing MS.

See, we got around to the point eventually. MS medication is life blood for people around the world, yet it can be so easily put out of reach.

And now I’m going to jump on my soapbox for a moment. If anyone ever asks why the Affordable Health Care Act is important, you can say that it’s because of me. You can tell them that—with all due respect—they are not looking at it correctly if they are thinking that this will cost the US more than it can afford.

One way or another, the US is going to have to help me. It is either going to guarantee that I can always be affordably insured or it will pay for my care under Medicaid because I am uninsurable.

I know it doesn’t seem fair to those of you who are healthy and fit. Why should you have to buy insurance so that I can get my meds?

The answer is simple: Because that is the only way society can work. We have to help each other out. We all have to be individually responsible and collectively companionate.

Here is the interesting phenomenon that is happening now. It seems to be working. 

It is happening despite the Federal government shutdown. People are discovering that this plan will actually benefit their lives and their families. The citizens of this country are learning that they can get the health care they need for a smaller cost than they were expecting. And all the while, the sky hasn’t fallen.

Get My Money, Buy My Medicine

Sorry Snoop, I’m not talking about THAT medicine. We will leave that for another post. I’m talking about this purple, orange, green.

Doesn’t interferon beta look like it is throwing a party? Epic blowout in Elys’s brain! Everyone’s invited!

I never really gave much thought to the medication I took. I always had Advil on hand to quell my occasional headaches. My first aid stash contained children’s Tylenol, some antibiotic ointment, and a big bottle of antacid.

Things have changed.

The amount of medication that has entered my life in the last few months is staggering. Here is an accurate recreation of what my medicine cabinet looked like before the diagnosis.

This is what it looks like now.

And this doesn’t include the Avonex, which is stored in the fridge.

I’ve had to become one of those people with the little case that holds all my pills for the day. Mine is purple and has the day of the week printed on the top of the tiny compartment. You know what I’m talking about. The kind your grandma had.

I do not want to get muddled in politics. I’m not going to write about my views on Syria or my opinion about gay marriage. If I want to do that, I will do it on another blog. I am not trying to push any agenda. But I do want to point out this: If you have ever wondered why Obamacare is important, it’s because of me.

I am the person that is benefitted by Obamacare. I know the plan isn’t perfect. I know that some people think it is bad policy. I think some of it is not correct. But when I got my MS diagnosis, it became essential to my health and wellbeing.

I now have a “pre-existing condition.” Before the Patient Protection and Affordable Care Act, I would—as of April of this year—be uninsurable. To be fair, I am covered, and covered well, by my generous company insurance plan. But if I was not employed, I would be completely screwed. Not only would I be saddled by a chronic condition that needs quite a bit of care, I would have to figure out how to pay for my meds. I am taking one of the most expensive prescription pharmaceuticals on the market today.

Which brings me to the other thing Obamacare has done for me. It eliminated the annual and lifetime spending limits that most insurance companies used to cap the spending on an individual. In these last few months, I have racked up the healthcare spending: MRIs, blood tests, visiting several different doctors, IV steroid therapy. And lest we forget, all those prescriptions. I would be hitting my head on that spending cap, and there is still a quarter of this year to go.

The last thing I need to be doing is hitting my head. Well, except when wearing a helmet and taking down a jammer.

The Internet Ruins Everything

I’m a Googler. When Dr. Sister was first talking to me about my MS diagnosis, one of the things that she told me to do was to stay off the Internet. This is why:

Here are the first few headlines on my Google news alert for Multiple Sclerosis. (Yes, I did stay off the Internet. For a good 45 to 50 minutes.)

How Will the Obamacare Out-of-Pocket Cap Delay Affect MS Patients?

Studies have shown that MS has one of the highest associated out-of-pocket expenditures. So this delay means that many MS patients will have to wait another 1-2 years before they see any financial relief or benefit. I am very, very lucky to have great health insurance provided by my employer. Without insurance, my weekly shot would cost me $37,544 a year.

New Study Casts Doubt on CCSVI as the Cause of Multiple Sclerosis

I’m not sure what this story means, except that scientists know a lot about what doesn’t cause MS.

FDA Probes Rare Brain Infection In Patient On Multiple Sclerosis Drug Gilenya

Because there wasn’t enough to worry about.

Then there is this:

Hey Sharon, I know you love your son. And People magazine cover editors, I know you want to sell magazines. But maybe we shouldn’t be perpetuating the myth that MS is fatal. I mean, no more than life is fatal. Wait, maybe Sharon meant she was going to turn Jack into a vampire? I smell some fan fiction!

And this:

Hey, who doesn’t deal with it like that? I know that my equestrian therapy not only eases my symptoms, it boosts the economy by employing my stable mucker. And my lawn has never been greener with all that horse shit. What's that you say Fox News? If we talk about Ann's horses, no one will notice Mitt's politics?

And don’t you love this one?

This was referenced on an MS support website. Doctor Death, the euthanasia guy. On a website about how to support people with MS. Really.

Even my beloved Amazon can betray me. Here is one of their top suggestions for reading up on MS.

Who knew it was that easy to overcome this? What the hell have I been bitching about? The secret to recovery can be found in these pages, and it can be yours for $18.75.

Yeah. Stay off the Internet. Well, except to read my blog.