"O" and "R" Are Not The Same

About a week ago, I got an email from someone at YouCast Corporation. As far as I can tell, YouCast is a social media company that is helping the Arthritis Foundation promote their new website. The email they sent me had the subject: "May is National Arthritis Month - PSA Campaign from Arthritis Foundation/Ad Council." Sounded pretty interesting....

Here is how the email started:

Dear Mariah,

I wanted to say that I appreciate what you do, sharing your journey of having RA. I love your tagline: I have RA. It doesn't have me. You are an inspiration.

Wow. How nice, I thought. The email then continued:

I wanted to share a new PSA campaign with you, Fight Arthritis Pain. It encourages everyone - especially those with arthritis - to simply move for better health.

Cool. I'm certainly all for "fighting" arthritis pain. Arthritis pain sucks. And I have been trying to get more active lately. Let's see what the Arthritis Foundation has to say about that.

The email then continued by encouraging me to use this blog as a forum for spreading the word about about their new campaign. But when I went to their website to check it out, it turned out that the website was almost entirely focused on osteoarthritis (OA). On the whole website I saw only two passing references to rheumatoid arthritis (RA), and nothing on the website clarified at all whether the suggestions they were making about OA are also useful to RA patients.

Now, I'm not trying to downplay OA at all.  Like I said, arthritis pain - any arthritis pain - sucks a lot and I am all for fighting it. But I do think it has to be acknowledged that OA and RA have different causes and thus they may need to be addressed in slightly different ways. For example, I'm not convinced that exercise is always the best option for someone with RA. Not during a "flare" anyhow.  I have certainly done that in the past and it has made things worse, not better.

Interestingly, however, I think whoever is behind the actual FightArthritisPain.org website seems to be aware of this issue, because the website itself is extremely careful about using the phrase "OA" or "osteoarthritis." Even the video clip says "osteo-arthritis."And, as far as I can tell, they never use the confusing phrase "arthritis" alone. 

But somewhere along the line the difference between OA and RA got totally lost. From what I can tell, the advertizing was being targeted at me simply because I have the word "arthritis" in my blog. And even though it looked like the person from the ad firm had actually looked at my website - they even typed the word "RA" in the message they sent me - they obviously didn't understand that the product they are marketing is targeted at people with OA, not necessarily RA. 

In response, I sent them the following message:

Thank you for your email. I am actually very interested in getting involved in arthritis education and outreach on my blog. I'm also in the process of trying to figure out - for myself! - how to be a bit more active. And I am certainly interested in fighting arthritis pain.

However, the materials that you have sent me - the video, the website, and all the related resources - are all talking about osteoarthritis (OA). I have - and my readers have or are interested in - rheumatoid arthritis (RA). My joints aren't aching from age, wear and tear, obesity, or injury. I was extremely active and only 25 years old when my RA hit and my body shut down. RA is an autoimmune condition. OA is not.

I think one thing that makes RA particularly difficult to deal with - particularly for a younger person who "looks healthy" - is the confusion over what "arthritis" means. Sometimes, when I tell people I have rheumatoid arthritis, they respond with "oh, I have a little arthritis in my knee." But it isn't the same thing. And promoting "movement as the solution to arthritis" without clearly differentiating the different types of arthritis only perpetuates this confusion.

I see only two passing references to RA on fightarthritispain.org. Nothing really clarifies what RA is or whether the suggestions about OA are also useful to RA patients. While the resulting joint pain may be similar, the causes are fundamentally different, thus I don't think that solutions to OA are necessarily solutions to RA. While movement probably/usually helps with RA, I'm not convinced that is always the case.

If you have some materials that are more specifically about RA, or at least differentiate between the different types of arthritis, I would be more than happy to post links to those on my blog. But this information seems pretty obviously directed at OA, so I'm not really sure why I would write about it on my blog about RA,

Thanks.

~Mariah~

That was six days ago. I've had no response at all, so I guess that gave me a reason to write about it. It boggles my mind that the people who made the website were obviously clear of the difference between OA and RA - and even went out of their way to always use the phrase OA to make it clear. But somehow the people who are advertizing the website think OA and RA are the same thing? That makes no sense at all to me. 

Focus

Last Wednesday, I found myself sitting it yet another three-hour long exhausting policy seminar for which I hadn't done the reading because I have no interest in the material. I was passing the time by thinking about how I would finish all the requirement's for my master's thesis next semester when I made a very important discovery:

I have completely lost my focus.

Before getting diagnosed with RA, I started this dual degree graduate program - for a law degree and a master's in environmental policy - with a purpose: the issues fascinated me, I had enthusiasm for finding answers to complicated problems, and I had at least a vauge idea of where I wanted to end up when the whole "graduate school" thing was over. 

I have no idea what I'm doing anymore. 

While I still think environmental issues are important, no particular issue grabs my attention anymore. I couldn't think of a single topic that I'd like to spend six months researching - or even that I could bear to spend six months researching. I still think the world needs to find answers to complicated issues, but I'm not certain if I should be the one finding them. And I have zero idea what kind of job I'd like to end up with when I finally muscle through these degrees. If it pays the bills, I'm not sure I care anymore.

I know this is partly (mostly?) exhaustion talking. I know I'm tired from a long  four years of law school, the past two of which I've done while trying to get my RA under control at the same time. I know I'll think more clearly when finals are over and I've had some time to recover. So I'm not making any decisions any time soon. 

But, lately, I can't stop myself from thinking. Or crying, actually. And the only reason I can come up with for why I am still "doing this" is because I'm stubborn. Because I already put in most of the work so I might as well finish it, no matter how miserable it makes me. It will be "worth it" somehow. That's what everyone else says too. "You're almost done." "You might as well finish." "You'll feel better soon." "It will be worth it in the end."

But I'm not sure a Masters in Stubborn is that good for my health. Or my sanity.

I Think I'll Go For A Jog Outside?

A few blocks from our house there is a lake that has a paved walking path all the way around it. I'm pretty bad at estimating, but to go all the way around the lake is probably less than a mile. But it is a beautiful location, surrounded by a park, budding trees, and a fantastic view of the Flatirons. Aside from the goose poo that is all over the grass this time of year, it is an ideal place to go walking.

We've been taking River walking there lately because she gets twice as much exercise when we let her jump in the lake after a stick or a ball. Pros? She's nearly impossible to wear out, so we need all the help we can get!  She behaves better when she gets exercise. Cons? She smells like dirty lake. And then the goose poo in the grass sticks to her more when she rolls in it. (Not going to lie: we still let her on our bed sometimes.) But she just looks so unbelievably happy splashing through the lake after the ball, like nothing better in the world ever happened to her, that I just can't resist. It makes me happy to watch her.

In any event, I don't know if it was the fresh air, the gorgeous day, or the the fact that we were both wearing practically unused running shoes, but today APL and I decided to jog halfway around the lake. I'll repeat that: jog. Cons? It hurt my bad knee and both of my hips. I got tired pretty fast. Pros? Even though it hurt some joints, it somehow also felt good too. I think maybe it also made me feel more energized and focused this afternoon. 

Halfway around the lake isn't very far, but at least I jogged at all!! Maybe I'll try again tomorrow. But don't hold me to it.

Ditto

I was just considering writing a post wondering what on earth I was thinking when I decided that law school was a good idea. Then I realized I already wrote that exact same post when I was studying for finals last semester!!! Ha ha ha! (Funny laugh? Or crazy laugh? You be the judge.)

So: ditto.

Dication Fail

To survive through law school exams, my hands need to be ready to somehow manage typing an exam upon which my entire grade depends for three hours straight. Granted, I get a little bit of extra time because I have a "disability," but that barely makes up for how my hands slow down at typing as they start to hurt. It doesn't give me much time to rest my hands during my exams. 

Which is why, the week before finals, I really need to be taking care of my hands. Resting and preparing for the hard work they are going to do. Unfortunately, my attempts at this are failing somewhat.

Up to this point, my Mac Speech Dictate dictation program has been extremely useful. All I had to do was put the headset on and read out loud and the computer would type my notes for me. Occasionally it would make a mistake, but for the most part the notes were still very useful. And using the dictation software saved my hands from a lot of typing.

Recently, though, the dictation program has been totally failing at writing down what I say. I have no idea why. Has my voice changed somehow? I did all of the voice training again, but it didn't seem to make a difference. Is something wrong with the microphone? It seems to hear me just fine. It just writes down something different than what I actually said. For example, here is the sentence I just read out loud from my environmental law casebook:

The enactment of the Clean Water Act of 1972 reflected a fundamental shift away from a water quality-based approach to pollution control toward an approach that emphasized technology-based effluent limitations.

And here is what my computer typed

we clean water 1972 reflected a fundamental shift way water quality based approach to pollution control the approach that emphasizes the elegy-based limitation

If I go back and read that later, I'll have no idea what it means!!! And I don't really have time to screw around with trying to fix whatever is wrong with the dictation program. I've probably wasted too much time on it already!!

In fact, I probably should be reading and outlining instead of blogging, now that I'll need to type all of my notes....

Crap. If I disappear off the face of the internet for several weeks, you'll know why.

Rate Your Pain On A Scale of 1 to 10....

I don't know if I've ever mentioned it on this blog before, but I hate when doctors ask me to "rate my pain on a scale of 1 to 10." I hate it even more when they give you that little chart of faces to use as a reference point. Umm....I feel most like sad face number 6? Except sad face number 6 looks constipated.

Since I live with pain every single day, I think pain that someone else might describe as a 9 or 10, because it is so unusual to them, might only be a 6 or 7 to be because I'm so used to dealing with pain. But that doesn't mean it doesn't hurt. And, just because I'm trying to be optimistic and smile and joke and not be miserable about this pain-causing disease that will be with me for the rest of my life doesn't mean it doesn't hurt.

However, if you tell the doctor that your pain is only at a 6 or 7, they basically ignore you (at least in my experience. Oh, and also supported by research in the New York Times.) But then if you tell the doctor your pain is a 9 or 10 to get them to take you seriously, but you're so experienced with dealing with pain that you're not rolling on the floor sobbing, they don't believe you either. Awesome. Hence, I hate that 1 to 10 scale. As long as me picking a number is going to result in you having no idea how much pain I'm in anyways, I'm just not doing it.

In any event, aside from complaining about the 1 to 10 scale for no apparent reason, the point of this post is to share something hilarious a friend sent me. Here is a link to a blog called Hyperbole and a Half. The blogger, Allie, has re-drawn the sad face pain scale to be more representative of reality. 

I may print it out and take it with me next time I have to go to the doctor for unusual pain. No, really.

Sugar Doll Blogger Award

After what has been a rough couple of days, it really made me smile to see that Laurie, who writes the blog Frozen Woman: Life with Rheumatoid Arthritis and always leaves me encouraging comments on this blog, nominated me for the Sugar Doll Blogger Award. Thanks, Laurie!

I think these blogger awards are a really fun way to acknowledge and thank fellow bloggers for the entertainment and support we bring each other. But the thing I really like about this award, in particular, is that in addition to passing the award along to fellow bloggers who bring happiness and inspiration to your life, you are also supposed to list 10 things that people may not know about you. So here goes:

10 Things You Might Not Know About Me!!

(1) I've been on the cover of a magazine.

(2) By the time I turned 25, I had been to all 50 states. 

(3) I can speak and read some Japanese. At least theoretically. I studied it in high school and college and also spent two summers in Japan. But I probably have the reading level of a Japanese kindergartner. 

(4) Once, I almost stepped on a puff adder, one of the most poisonous snakes in the world. I was camping in Botswana, in the legitimate middle of nowhere. If it had bitten me, I probably would have died.

(5) Occasionally, I actually enjoy law school. Don't tell anyone. 

(6) APL and I have been to almost half the National Parks in the country together.

(7) I've been best friends with my best friend since kindergarten. Our friendship is more than two decades old.

(8) I originally met APL when I was 14 years old. I was a high school freshman on the varsity water polo team. He was a junior and in love with the captain of my team, so he used to hang around the pool.

(9) My favorite food in the world is artichoke. I decided this when I was six and haven't changed my mind yet.

(10) I'm weirdly ambidextrous. I eat and write left handed, but I throw right handed.

Women That Inspire Me (And Their Blogs!) 

Kelly Marie is a friend who has been dealing with autoimmune stuff for years, but she never lets it stop her from being totally cheerful!! Her ability to stay positive despite medical drama has always amazed and inspired me. And she doesn't let being ill stop her from achieving her dreams!! What started as selling a few handmade cards has become her own business designing and selling stamps!! Her blog, Lawn Fawn, is always full of beautiful, crafty, uplifting projects. And if you like stamps the Lawn Fawn Stamps are the cutest ever!! 

And while I'm on the subject of amazing and crafty women who inspire me, I think I'll also pass this award along to my friend Paris! She not only graduated from law school a semester early (totally unheard of!!) but she has also started her own home business making all-natural bath and body products, a little company called Blue Duckling. Paris and her husband make all the products by hand in their own kitchen! Paris inspires me because, even when times are tough, she always find something to do to keep herself hopeful and smiling. 

Lastly, my cousin Karla. To be fair, I've already given my cousin a blogger award, and she's given me one too. So maybe it's really silly to keep giving them back and forth to each other. But the thing about my cousin is that she's amazing. Her blog, The Itsy Bitsy Spider, is mostly about the amigurumi (which are highly adorable plush toys) that she knits/crochets. But my cousin also has RA, and so sometimes it is completely beyond me how she is able to do such amazing things with her hands. On top of being fabulously crafty and dealing with RA, my cousin is also mommy to a toddler!! Being a mom is never easy, and I think being a mom with RA must be even tougher. But, when I worry about how it will ever be possible for me to manage it, I just think about how my cousin is already doing it!! Plus, I'll have something she doesn't have - her advice!!

In any event, like all of these ladies, I hope I someday find a way to be successful at something that makes me feel satisfied and happy.

RA + strep throat = permission to relax?

Today I feel like I've been literally run over by a steam roller. My body aches all over- more than I can possibly explain. 

But, it's weird, because somehow I also feel more relaxed today than I have in a couple of weeks. I slept till well past noon and then lay in bed with River for an hour before getting up. Then I made myself a cup of tea and some toast and proceeded to look at old travel pictures for several hours. I haven't even considered trying to outline environmental law or write that 20 page paper on black carbon today.

It's like somehow being "actually" sick gave my brain permission to take a break from everything. Not that I like having strep throat - obviously I don't need any more pain or fatigue than I already live with everyday - but figuring out how to give my brain permission to take a break is something I could totally get used to.

In Reporting Symptoms, Don’t Patients Know Best?

A friend just sent me an interesting article from the New York Times: In Reporting Symptoms, Don’t Patients Know Best? 

The column addresses whether doctors have a tendency to play down the symptoms and complaints of their patients. Apparently, research suggests that this happens quite often. The reasons a doctor may minimize a patient's symptoms are complicated:

The tendency to downgrade symptoms may be based on the doctor’s knowledge that a patient is in the early stages of an illness and could be much worse. Or the doctor may be making mental comparisons with other patients who are sicker….Sometimes the downgrading may reflect wishful thinking by doctors, who may think that a certain drug will help patients and don’t want to take them off it.

In any event, though the article is more specific to side-effects from drugs rather than treatment in general, I found it interesting. And a little scary.

When Help Isn't Helpful

Remember that part in my last post where I said: "I don't want to deal with bad doctors right now"? I jinxed myself, I think.  

The psychiatrist at student health just chastised me, quite harshly in fact, for trying to do too much. He pretty much flatly said that it was my own fault that my body is falling apart. I tried to express the effort I have already put into cutting back on my activity level, and I even agreed that I still need to cut back some more. But I also said that I didn't see how that conclusion helped me get through the end of this semester. His response was that it didn't matter if I failed all my classes, I could always take them again.
   

Now, I don't have a PhD in psychiatry or an MD or anything like that, but aren't doctors supposed to help their patients? It is not helpful to tell a law student that it is ok if they fail all of their classes. It is not helpful to tell someone with an autoimmune disease that being sick is their own fault.

It is not ok for me to fail all my classes. Just because I have an autoimmune disease doesn't mean I have to give up my aspirations. And it is not my fault that I am sick. It's just life. And I'm doing the best I can with it.

Doctor, I don't think I need your help anymore.