A Letter to My Very First Neurologist (Ish)

Dear WebMD,

I’ve noticed that you’ve been getting a lot of flak. A lot of hate. People use you as a punchline. Like, “I had a cold.. but WebMD told me I had cancer!” That must be hard. So I’m writing to let you know that I’m still here, as a friend. I’m a loyal, true believer. Yes, there have been times when I just had a nosebleed and you told me it was either a brain tumor or like, I don’t know, Ebola, but one time, when it really counted, you were my ally.

You probably don’t even know what I’m talking about, so I’ll tell you. Once, when I was 18 and home on winter break after my first semester of college, I had just gotten over what my local doctor told me was a bad virus when my feet went numb. And then they stayed numb. It was very odd. I did a lot of things to try to get them to un-numb themselves, but nothing worked. I put on warm socks and ran up and down the stairs. I rubbed them a bunch. I took hot showers. And then, WebMD, I turned to you. I plugged all the things I was feeling into your lovely symptoms checker and you spit back at me “Multiple Sclerosis.”

Multiple Sclerosis was something I knew nothing about. I didn’t know anyone who had it. I knew that sometimes people did charity runs or bike rides for it because it was A Very Tragic Disease that, I don’t know, probably Only Very Sick and Old People had and probably led to them being Confined to Wheelchairs. Thus, I yelled to my dad, “Dad, could I have multiple sclerosis?”

And he, as every father probably should when a teenage daughter says “Dad, could I have [insert tragic disease here]?,” said “No, what? No.” Thus I attempted to put it out of my mind. But, as the existence of this blog might have led you to guess, you were right, WebMD. You were right! You are probably wrong a lot of the time, but with me, you were right. And I argued with a few doctors and convinced them that something was really wrong and that I knew my body and knew that it didn’t feel right and that I really really did need an MRI. Finally, though they thought I was crazy, they gave me one and then they scratched their heads because you guessed it, there were lesions, and without your symptoms checker, I might not have gone to the doctor.

Which is really my point, other people who might be reading this letter (oh, is this on my blog? How interesting.). My point is that you know your body better than any doctor might and even though WebMD is often wrong and you don’t have a new kind of cancer every time you have a headache, sometimes they’re right, and if it’s WebMD who convinces you to go to a doctor and makes you feel legitimate enough to say, hey, listen, I want you to run that test, then so be it.

A thing, though, which is strange, is that I went back, for old time’s sake, let’s say, and I put in all those symptoms that I had, because, I don’t know, masochism, and MS didn’t come up. The top results were much less serious conditions, even though I put in all the symptoms I had which were accurate and pointed to an accurate diagnosis. I had to scroll down a very long list to find MS. WebMD, are you feeling pressured? Are you trying to change your reputation as an over-reactor, the website that says cancer when it’s just a nosebleed? Don’t tell someone like me “Poorly fitting shoes” (an actual result just now) when they have MS. You know that doesn’t explain the nausea, the dizziness, the vertigo, the vomiting.* WebMD, be yourself. Just tell us your truth, we can take it! Be a tool of empowerment, even if people don’t see you that way. Some doctors suck and barely listen, but you take every symptom into account and give every possible answer. Keep doing that.

Love,

a Hopeful Fan

*seriously, I have worn some poorly fitting shoes in my life, and they have never caused… MS-like symptoms.

No wait, this is stupid!

If you get strep throat (which I just did), you go to a doctor and get antibiotics. Right? This is how you fix strep throat.

If you break a bone, you get a cast.

If you trip and fall, you pick yourself back up and if you cut open your finger, you put a band-aid on it.

We seem to have very standard ways of dealing with a lot of problems that can happen to our bodies. If any of the above things happened to me and I didn’t follow the courses of action that I outlined, you would wonder why, right?

If I got strep throat but told you that I wasn’t really convinced that antibiotics would help it, you might be a little confused.

For some reason, people seem to think that this isn’t how it should be for some diseases. For instance, we’re supposed to be chill with the fact that Ann Romney, along with many other MS patients, has chosen to not take any medication.

What? Apparently the PC thing to do about that is to not say anything. We can’t comment because it’s her choice and we can’t laugh at her stupid horse therapy (“hippotherapy,” whatever) and we can’t make value judgments because apparently she has made her own logical choice.

I’m really tired of this.

She’s being irresponsible. She’s opening herself up to the possibility of being literally struck down with an MS relapse at any time which could put her in a wheelchair or cause full-body paralysis or cause her to become incontinent or cause blurred vision or nausea or vertigo or… the list is pretty damn long.

When I’m relapsing, my vertigo is too strong for me to walk. I can’t eat anything without throwing it back up. I can’t take a shower without collapsing on the bathroom floor. I go to the ER and they give me one drug after another until I’m too exhausted for them to do anything else and then they send me home. My (wonderful) friends and family drop everything to take care of me. When I’m relapsing, what I want is to just sleep through it. Since I’m a responsible person, I’m on a drug (Copaxone) which reduces my relapses by 30%. I have an illness/disease/condition/new-best-friend-for-life/whatever you want to call it, and I treat it. Because that is the logical thing to do.

Aside from all the other crap that Mitt Romney does (see my last post for some details), do we really want a president whose wife is a ticking time bomb? At any moment, she could relapse, and all his attention would have to be on her. As it should be, since they’re married. But all his attention wouldn’t be on her because he loves her or because she has MS, it would be because she’s irresponsible, and she’s put herself in a precarious position. I have no respect for that. And neither should you.

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!