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mslifeisbestlife

Spinal Tapped – Life as a 20something with MS

Tag Archives: medical stuff

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.

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I went on a brief vacation. Not to anywhere, per se, but from something.

Due to some mix-ups with prescriptions and shipping I got stuck without my meds for a couple days. I know I should be upset, even a little scared (because my meds are protecting me from The Relapses).

I’m just mainly happy. This is what I’ve been asking for since I started on Copaxone a year ago (pretty much exactly a year) because Copaxone sucks. I’ve just been wanting a couple days where I don’t have to worry about injecting, or about needles and sharps containers and do I have alcohol swabs? Is it safe to use Purell instead? Can I use a tissue instead of a cotton swab? A water bottle instead of an ice pack? Clearly I’ve gotten less scrupulous in my injecting.

There is literally nothing worse than the moment every night when I realize that I have to do my injection. There is nothing more annoying than the fact that it’s not already in my consciousness. Maybe if I woke up every day already knowing, already remembering, it wouldn’t be so awful. Or maybe it’s good that I don’t spend all day dreading it.

When I get my MS tattoo (which won’t be until at least October), it’s going to be a set of commemorative arrows. The arrows are going to be

a) going from left leg to right

b) from right leg to left arm

c) from left arm to right arm

d) from right arm to right hip

e) from right hip to left hip

f) and then back to left leg

My mom pointed out that maybe someday I won’t be on Copaxone and the arrows won’t be “useful” anymore. They’re not there to be useful. I am not an instruction manual for my medications. What I mean by it is that for me, it was really hard to start injecting. I spent the first four days crying for half an hour before I even injected (and then, being inexperienced and badly taught, crying for a while about hitting muscle) (if you’re just starting out on Copaxone, you really don’t want to hit the muscle).

They are there to say I am Brave. I spent the first 18 years of my life passing out and having seizures (convulsions? terminology? it means the same thing, @parents) every time I needed a medical procedure involving needles. Now I inject myself every day. I am Brave.

It’s been a nice vacation. The white box on my porch made me half relieved, half terrified all over again.

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GUYZ. Click this. I’m so (prematurely) excited. Injections suck.

Although, I’m a little freaked out by the thought of Copaxone side effects happening at a certain time every night and me not having any control over it…. other than that, this is awesome. :)

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