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!

 

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.

Vacation? Heyyo

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.

Lists! Again!

Things which make me happy: 

1. Finally meeting someone else who’s going through the same stuff. Someone else who’s scared and confused and feels like they should know a little more. Maybe this shouldn’t make me happy, but it does.

2. Facebook messages that say “I like your blog, and wow you’re brave” from someone I don’t know that well.

3. Passing chemistry which leads to…

4. Getting a little closer to becoming an MS researcher

5. Being a little mean and not letting other people hide from what people with MS go through every day.

Things I want for my birthday:

1. A day off Copaxone. Please?

2. A cure

3. New jeans

4. Better training for the CT needle-wielding fiends… oh I mean nurses…

5. People to pronounce “Godot” correctly. 

6. Twizzlers

BG-12 (Best name ever, right?)

What is BG-12?

Well, I’m not really sure either, but I can tell you that: 

1. it’s an oral MS med

2. it’s not Gilenya

3. I’m scared of Gilenya…

4. it’s about to go into phase 3 testing 

5. the testing will be vs my lovely med, Copaxone!

So, my current thing to ponder (and email my doctor about) is whether I should try to sign up to be a participant in the testing… I’m a little scared of getting a placebo and unknowingly being without treatment for months. That seems like a generally bad idea for me, although I know it would benefit the MS community etc etc yada yada… but okay being off treatment is scary! 

If you (yes YOU, if you exist) know anything about BG-12 or have any thoughts to share… go ahead and do that 🙂