From “Confessions of an RA Superbitch”

This just popped up on my Google Reader, and it was too good not to share. It’s nice to know that other people see what we’re going through, eh?

Hubby: Honey, you are doing so well. You manage to get up every day despite debhilitating pain and stiffness and still remain the most positive person I know.

Me through tears: You don’t get it. The ONLY reason I do get up every day is for you and our son.

Hubby: But that’s ok because you get up.

Me through worse tears: You don’t get it. That’s the point. I don’t want to.

Hubby: No! The point is that you DO…because if I were you, I don’t know if I would.

Via Confessions of an RA Superbitch
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#HAWMC day seven: stop calling, i don’t want to talk anymore

Well guys, I bucked up and recorded a voice memo to my health. Because I go the extra distance. For you. You’re welcome.

Click here, since apparently I can stream audio through WordPress without a space upgrade. If anyone knows a good audio streaming site, let me know!

#HAWMC day four: panacea

Guys, I have some great news: To cure autoimmune arthritis, all we have to do is eat all natural, organic foods and poof! All better. I know, right? Such a relief.

Not.

It seems everyone has a favourite “cure” for autoimmune disease, but one of my personal faves is healthy eating. (Yes, this is coming from someone who has had limited success with a vegetarian diet and who is considering going gluten free.) But it’s the extremes to which this can be taken—literally, as if eating raw carrots at every meal will suddenly make me all better—that makes it so bizarre.

My favourite cure-all for psoriasis has definitely been dunking the afflicted area in apple cider vinegar. Because, you know, that’s sounds completely sanitary.

Then there’s the one that says Tylenol will make me all better. (And don’t even get me started on those arthritis caps! I hate those dang things.)

Though it’s good to laugh at all the ridiculous suggestions we get for psoriasis/psoriatic arthritis/whatever cures—and I know I’ve heard some doozies, like literally that love would cure me; as great as love is, I don’t think it can do that—it just goes to show how important health advocacy is, even if it doesn’t feel like that’s what we’re doing. Even if it feels like we’re just blogging into a void, eventually our voices will all join together and make a chorus too loud to ignore.

And then we can go around telling healthy people how to live. Yeah, that’ll be the day.

#HAWMC day three: stupid questions

Though it’s been said, “There are no such things as stupid questions”—hell, I’ve even said it myself—some of the queries I’ve been subjected to as a result of my psoriasis or psoriatic arthritis make me want to change my mind about that nugget of popular wisdom.

The granddaddy of them all, however, is probably the most harmful question those of us with (mostly) invisible illnesses face: You look so healthy/normal; how can you be sick?

Of course, psoriasis isn’t necessarily invisible; the itchy, flakey, red, angry patches are easy to see if they’re on a part of the body that’s easily seen, like your face or hands. Luckily for me, my psoriasis is mostly confined to my scalp (at the moment), though it hasn’t always been that way.

And for some people, arthritis isn’t invisible, like the destructive form of psoriatic arthritis mutilans. But for me, in both cases, it mostly is. So, why is it so hard to believe that people could be struggling so hard just to look normal when they do, in fact, look completely healthy?

Well, at least in my case, I try really, really, really hard to make myself seem normal. I do my hair. I put on makeup. I wear nice clothes and shoes. I drink caffeine to give me energy. I take lots of pills to keep the pain and stiffness at bay. I sleep an insane number of hours on the weekend and try to take it easy after work. There’s actually quite a bit of effort into looking and acting effortless.

People often also have an expectation that the sicker you are, the worse you should look. There have been days when I have felt exceptionally horrible and no one was the wiser. That’s kind of the point: It’s an invisible illness. It’s not out there for the whole world to see in the same way being in a wheelchair is.

So here’s the rub: Just because we don’t look sick doesn’t mean we’re not. Just because we look like we’ve got everything under control doesn’t mean we do. And just because we’re good one day doesn’t mean we will be the next. That, my friends, is the fun of an autoimmune disease.

#HAWMC day two: abstemious

Abstemious: adj. \ab-STEE-mee-uhs\
1. Sparing in eating and drinking; temperate; abstinent.
2. Sparingly used or consumed; used with temperance or moderation.
3. Marked by or spent in abstinence.

Having psoriatic arthritis is a study in refraining. Though I often try to concentrate on everything I can do rather than what I can’t, to be upbeat and make the people around me feel good about my having a chronic, incurable illness, part of being a health advocate means sometimes I have to make it crystal clear what having two lifelong conditions is like.

And, sometimes, it’s marked with things I can’t do, with things from which I must abstain.

Take alcohol, for instance. I am on methotrexate, that wonderfully toxic drug that somehow lets me function more like a normal human being. But it brings with it the potential for liver damage. Since I like my liver and I’d like it to continue working, I have to cut out other things that have the potential to harm it. This is where me abstaining from alcohol comes in. This is harder than I thought it would be. Even though my parents, say, and my in-laws know I can’t drink—and know why—they all still insist on offering me glasses of wine or cosmopolitans. And, yes, I’ll admit that now and then I indulge. But for the most part, it’s not worth it.

Then there are days when I want to abstain from everything. Days my meds aren’t working the way they should and days when I’d love to hit pause on my life and just sleep until I felt better. But in all honesty, I take methotrexate and many other pills so that I don’t have to abstain from doing most of the things I love. And that makes giving up the few things I do have to let go that much easier, in the long run.

awesome blog by an awesome girl

My friend Beth has started/re-started her blog, but with a new moniker: Sticks, String and Side Effects (which I love, PS!). In her own words, here’s what it’s about:

These are the musings of a twenty-something North Carolina girl transplanted to the ‘burbs of DC. An archivist/transcriber by day and avid knitter/beginning spinner by nights and weekends, and doing it all living with SLE (Systemic Lupus Erythematosus), fibromyalgia, and major depressive disorder.

She’s got an awesome knitting post and one about living with chronic illness (which, for most of us, means taking several pills just to function).

So, what are you waiting for? Check it out!

round of applause

So, I was at about the three-quarter mark in a very long day, when I ventured a peek into my e-mail, not expecting much of anything. Instead, to my surprise, I found an award!

As it has been a pretty rough day pain-wise, it was a nice little pick-me-up to get an accolade. I’m glad people find my rambling helpful; I know it certainly helps me to get stuff off my chest here, instead of either bottling it up or spewing it all over the Professor (or both).

A lot of other great blogs were honored, too. Click on the image to find out who; maybe you’ll find a new blog to start reading; I know there are some on there I’ve never ventured into before.

rikki, don’t lose that number

Wednesday is an important day for arthritis and other patient advocates; it’s “I Need My Rheumatologist” capitol call-in day.

I’m sure by now almost everyone has heard that, unless Congress acts fast to fix the sustainable growth rate (SGR), the formula used to determine payment to doctors, rheumatologists (and all other doctors!) will see a 23-percent cut to Medicare reimbursement payments. (Here’s an interesting commentary on SGR and Medicare.)

This is unacceptable. Everyone has the right to affordable health care. (The Universal Declaration of Human Rights, adopted by the United Nations in 1948, states that “everyone has the right to a standard of living adequate for the health and well-being of oneself and one’s family, including food, clothing, housing, and medical care.”) How many people will no longer be able to see their rheumatologist—or any rheumatologist—if Congress doesn’t act? How many rheumatology practices will have to close or cut back if they can no longer afford to accept Medicare patients?

Seriously, it seems like a no-brainer, Congress.

Organised by the American College of Rheumatology, numerous patient organisations have jumped on board, including the National Psoriasis Foundation, Arthritis Foundation, Lupus Foundation of America and the Spondylitis Association of America.

So, pick up the phone tomorrow and take 30 seconds to call your representatives. To quickly and easily reach lawmakers, dial the AMA Grassroots Hotline at (800) 833-6354. ACR is recommending we start the conversation with, “I need my rheumatologist (or, “My loved one needs his/her rheumatologist”). Please fix the SGR before Nov. 30 to ensure access to my doctor.”

 

(P.S.-Feel free to use the button I whipped up.)

the benefits of ‘loving with chronic illness’

The always wonderful Maya of Loving with Chronic Illness has posted a plea for help on her blog. Her boyfriend’s two sisters have Friedreich’s Ataxia, and his mother is participating in Ride Ataxia Philadelphia, a bike ride to raise money for and awareness about the disease. I know times are tight with everyone, but head over and read her post. We Chronic Babes have to stick together, right?

Here’s an excerpt from her boyfriend’s mum’s letter to friends and family, taken from Maya’s site:

I remember at Sara’s diagnosis in 1996 when the doctor said that potential cures would be the year 2000 or beyond; that seemed like a lifetime. Well, never in my wildest dreams did I think that in 2010, I would still be waiting. Little did I understand what it takes to cure a disease.

On September 26, Sara and I are travelling to Philadelphia to the Children’s Hospital to begin a drug trial that will last a couple of months with 5 separate trips to Philly. This is one of several studies that are underway or will be underway in the months to come. Both Sara and Laura will participate in another study here in Rochester next Spring. Finally, a little hope has arrived at our door. Our years of fund raising and contributing have meant something.

To find out more, head over to Maya’s site. I know I will.

calamity! hilarity!

OK, so I was finishing my marathon sprint through Mariah’s blog (which I had tons of time for today, since my boss is super slow and super disorganized on our production day [I work at a newspaper] ), when I came across this lovely gem about her, her fiance, a bad magazine and a big jerkface.

I laughed out loud when I read this one. Then, I e-mailed it to myself so I could show it to my husband when I got home.

Seriously, if you don’t think this is funny, then I don’t think even more cowbell could improve your sickness.