start fresh

Where has September gone? I feel like just yesterday it was the end of July.

Anyway, this lovely meme has been making the rounds for Invisible Illness Week. I’ve done it since 2009, but it’s always fun to see what’s changed.

1. The illness I live with is: psoriasis and psoriatic arthritis.
2. I was diagnosed with it in the year:  psoriasis in the late 1990s and PsA in 2005.
3. But I had symptoms since: Psoriasis was a quick diagnosed, but I was diagnosed with PsA in 2006, then changed and now I’m back to PsA again.
4. The biggest adjustment I’ve had to make is: changing my footwear options. Seriously, people: How hard is it to make cute, comfortable heels?
5. Most people assume: that only old people get arthritis. Ugh.
6. The hardest part about mornings are: stopping myself from hitting the snooze button. Again.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: my iPhone. Seriously, how did I get along without that thing?
9. The hardest part about nights are: when I’ve overdone it and everything hurts.
10. Each day I take 10 pills and two weekly injections. 
11. Regarding alternative treatments I: believe they are a part of my treatment regimen but not the whole solution. I don’t function well without the aforementioned pills and injections.
12. If I had to choose between an invisible illness or visible I would choose:  definitely invisible. I’ve kind of got both; psoriasis, when it’s flaring, is extremely visible. It’s better to be incognito, I think.
13. Regarding working and career:  I love my job. Love, love, love it. Who I am is largely defined by what I do. I would put up with quite a bit in order to be able to work.
14. People would be surprised to know: that I’m in my 20s, apparently. My writing voice must sound older because, in real life, people constantly ask my if I’m a student at nearby major university. It’s the freckles, I think.
15. The hardest thing to accept about my new reality has been: that I had a new reality. It’s kind of a bummer.
16. Something I never thought I could do with my illness that I did was: run a newspaper. Successfully. (Though I guess it’s a little early to start celebrating on that front. Stupid bad economy.)
17. The commercials about my illness: I don’t have cable, so I don’t see them.
18. Something I really miss doing since I was diagnosed is: not needing nine hours of sleep to feel fully functional.
19. It was really hard to have to give up: I’m trying not to see things in a pessimistic way. So, instead of giving up heels, say, I’m trying to see it as a chance to expand my rockin’ flats collection.
20. A new hobby I have taken up since my diagnosis is: sewing.
21. If I could have one day of feeling normal again I would: drink some peach sangria and stay up all night reading.
22. My illness has taught me: that even bad things can have upsides.
23. Want to know a secret? One thing people say that gets under my skin is: “You have arthritis? So, what? I totally have that in my finger/toe/other insignificant joint.” Jerks. I have it in just about every joint and mine happens to be an autoimmune disease, so not quite the same.
24. But I love it when people: just accept me the way I am.
25. My favorite motto, scripture, quote that gets me through tough times is: Pretty much all of Job.
26. When someone is diagnosed I’d like to tell them: that they are not alone and that, thought it may seem like it right then, life isn’t over. It’ll just be different.
27. Something that has surprised me about living with an illness is: just how many others are dealing with some kind of chronic illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: get me supplies for the greatest bubble bath of all time.
29. I’m involved with Invisible Illness Week because: our diseases are only as invisible as we are.
30. The fact that you read this list makes me feel: well loved.

#HAWMC day 6: why i write

I have loved words for as long as I can remember.

As a kid, I was always writing or reading, burying myself in the impact words can have on the imagination. As I grew older, I relished losing myself in books, pretending to be so very far away whenever my life seemed less than ideal. Now, I still love reading, and I make my living with words: writing them, editing them, using them to inform.

It took me a long time, though—perhaps longer than it should have—to turn my love of writing into a health-centred blog. It was scary to put myself out there, to admit to the whole wide Web that I have a chronic illness, that I am not normal, whatever that is.

My first health-related post was during Invisible Illness Week in 2009. At that time, my blog was more about my life in general than patient advocacy, and I didn’t anticipate writing much more about my challenges with psoriasis and psoriatic arthritis. I remember the horrible pit in my stomach—the way my tummy feels during that first big descent on a roller coaster after the long, slow climb—as I hit the publish button.

Slowly, I started adding more content about PsA, until it completely took over my blog. Why did that happen? A couple of reasons: At that point, not a whole lot of people in my life knew about my health difficulties, and few of them really understood exactly what I was going through. Posting online was a way for me to connect with people like me. It also served as an outlet, as a way to release the sometimes ugly emotions that are one of the worst side effects of autoimmune disease—worse even than moon face (aka fat face).

Now, my motives still incorporate the desire for empathy and the need for a release, but there’s something more. I wanted to educate people as to what it’s like to be trapped in an 80-year-old’s body, what it’s like to have a chronic illness. I love being able to help people, to connect with people and to reach more people than I otherwise would be able to. I love being a patient blogger, a health advocate, a voice standing up and saying, “Yes, I have arthritis. No, I’m not 80 years old. And no, it doesn’t ruin or run my life.”

getting crafty

So, as I’ve written before, I’m doing the Jingle Bell Run/Walk for Arthritis tomorrow. Since the theme is (clearly) jingle bells—we’re to tie them to our shoe laces and everything—I decided to stop at Michael’s and pick up so small jingle bells and beads and make some earrings with some of the leftover chain I had from making a skeleton key necklace. Though the bells weren’t as small as I’d hoped, it still looks very festive and fun, which is the idea.

I only wish there were more people on my team, so I would have a reason to make more than one pair! They were surprisingly easy (and they dress up my DIY earring holder very nicely), even with a hand that still refuses to grasp things or twist.

Regardless, I’m pretty excited about attempting walking 5K tomorrow and being a part of something so much bigger than I am. I’m glad the Professor will be there with me; I wish they would have let dogs go, too! We got Otis an adorable knit sweater, and he would have looked positively festive with his red sweater and green leash.

It’s got my really revved up for the Walk to Cure Psoriasis in April, which I will also be doing for the first time next year. It’s kind of funny; when I posted my first 30 things about my chronic illness during Invisible Illness Week, I never expected it would prompt me to become so much more involved with other spoonies: becoming a National Psoriasis Foundation mentor, blogging more openly about my illness, participating in this 5K and even getting interviewed for articles (which was weird for me, since I’m usually the one asking the questions, but that’s another post entirely). Just one little post brought so much change. I guess it’s really hit home what Gandhi said: We must become the change we want to see.

at least i’m not as sad (as i used to be)

Methotrexate

Methotexate // Image via Wikipedia

It’s kind of perfect that it’s Invisible Illness Week, with the way I’ve been feeling for the last few days. I don’t know if it’s a reaction to the flu shot I got Friday, a flare, side effects from my increased dose of the yellow dart (aka methotrexate) or something else entirely, but this week has not been a good one, disease-wise. I’ve been extra sore, extra exhausted, nauseous (blech) and headache-y, plus the tendons in my left hand — which had been doing OK after a prednisone taper — have decided that they were just kidding about feeling better. Awesome.

(So, I took a break from writing this to paint my nails, and my left hand is so bad, holding the polish brush to paint my right hand left me in tears. I’ll be phoning my rheumatologist in the morning. Geez.)

The point is this: No one around me (with the giant exception of my husband) knows how hard this day was for me. Not my boss, not my co-workers, not any of the people I interviewed today, not my neighbours. No one.

The invisible part of invisible illness is a mixed blessing. The fact that no one knows it’s a Bad Day™ is both a good and bad thing. To the average person, I look like a vibrant, healthy twenty something. And that’s a good thing because, as much as I am all about advocating for those with chronic illness, it’s nice to have the option not to do that all the time (or, at least, when my psoriasis isn’t visibly flaring). But I struggled today. Things that should have been easy were hard: opening a door, holding an empty mug in my left hand, sitting in my chair at work, painting my nails, focusing on conversations. Today, I could have used help. But, other than my husband, no one offered—not even those who know I have a chronic illness. And I think that’s because—and I know everyone out there with an invisible illness has heard this at least once—I don’t look sick.

That makes things hard sometimes. I don’t like asking for help, but that’s on me. Having a chronic illness has forced me to change how I approach things, and I think that’s OK—at least now. I won’t lie: I struggled with that for a long time. But everyone has something they’re dealing with; life isn’t perfect, even for healthy people. And that’s OK, too. I’m not thankful I got sick, but if there is one think I’m thankful it did for me, I’m thankful for that. I’m thankful I can recognize life is hard for everyone and maybe we should all do what we can to make it easier, to make people feel happier (or maybe just less sad) and less alone.

It’s a thought, anyway.

30 things

I did this last year, too, and it was the catalyst that started me blogging more about my chronic illness. I figured it would be interesting to do it again and see what has changed. It’s also a great precursor to Invisible Illness Week, which starts tomorrow.

1. The illness I live with is: psoriasis, psoriatic arthritis, migraines
2. I was diagnosed with it in the year: 2000 for psoriasis and 2005 and again in 2009 for psoriatic arthritis.
3. But I had symptoms since: 1999 and 2004.
4. The biggest adjustment I’ve had to make is: being OK with the fact that I can’t do everything I used to.
5. Most people assume: that I’m not sick at all.
6. The hardest part about mornings are: how stiff, exhausted and sore I feel.
7. My favorite medical TV show is: Scrubs.
8. A gadget I couldn’t live without is: my iPod to pass away long hours in waiting and infusion rooms.
9. The hardest part about nights are: how hard it is to fall asleep and stay asleep.
10. Each day I take __ pills & vitamins. (No comments, please) 23 plus a weekly injection
11. Regarding alternative treatments I: am willing to add them to my regimen, but they’re part of an approach that also includes conventional medicine.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. There are benefits and drawbacks to each.
13. Regarding working and career: I work. It makes me feel normal. I hope I can continue working for as long as possible.
14. People would be surprised to know: how much pain I’m in every day. My tolerance for such things have gone up.
15. The hardest thing to accept about my new reality has been: that there are consequences for everything. Every activity — even small ones, like blow drying my hair — take something out of me. I have to decide what’s worth it, what’s essential and what can be left for another day.
16. Something I never thought I could do with my illness that I did was: teach Sunday school. Well, I’m trying that this year, so I guess we’ll see how it goes.
17. The commercials about my illness: are non-existant. And the ones I see for immuno-arthritis always show older people.
18. Something I really miss doing since I was diagnosed is: being able to pack my days full and not worry about how I’ll be feeling tomorrow.
19. It was really hard to have to give up: the freedom to do whatever, to not think of my energy as a finite resource.
20. A new hobby I have taken up since my diagnosis is: jewelry making.
21. If I could have one day of feeling normal again, I would: dance, go horseback riding, take my dog on a long walk, read all night, spend time doing things my husband wanted to do.
22. My illness has taught me: the value of patience.
23. Want to know a secret? One thing people say that gets under my skin is: “Arthritis? Oh, my grandma has that, and she’s fine.”
24. But I love it when people: don’t treat me like an invalid when they find out I’m sick.
25. My favorite motto, scripture, quote that gets me through tough times is: God knows our situation; He will not judge us as if we had no difficulties to overcome. What matters is the sincerity and perseverance of our will to overcome them. — C.S. Lewis
26. When someone is diagnosed I’d like to tell them: grieve. It is essential. Grieve for who you used to be, who you thought you would become, your lost dreams, your health. Then, get on with it.
27. Something that has surprised me about living with an illness is: how strong I am.
28. The nicest thing someone did for me when I wasn’t feeling well was: marry me anyway.
29. I’m involved with Invisible Illness Week because: invisible illness is only invisible for as long as we don’t put a face to it.
30. The fact that you read this list makes me feel: content.

hear, hear

From the Carrboro Citizen: Make the insurance companies do the right thing.

From me, a resounding amen. As someone with a pre-existing condition, my biggest fear is losing my jobs and the insurance that goes with it. I could certainly not afford to see my doctor on a regular basis without it, much less my prescriptions. So, yes, I have a dog in this fight, and yes, this issue affects me, perhaps more than some. But I think everyone has the right (yes, the right) to health care. And I think it’s a damn shame that the “best country in the world” doesn’t do more to provide it.

aubrey, start the revolution!

I meant to post this awhile ago, but somehow never got around to it. It’s a guest column in The (Kinston, N.C.) Free Press, a paper I worked at for more than a year.

In it, a twenty-something mother and wife describes her battle with rheumatoid arthritis, something that she was diagnosed with less than a year ago.

Please read it, and maybe learn something from it. Everything she describes in her column is true, and it really resonated with me, anyway. Hopefully, for those of you who are healthy and don’t have to deal with this kind of thing, it will open your eyes a bit to the lonely struggles of people around you. Honestly, the judgmental attitudes and preconceived notions of what arthritis looks like can hurt more than the disease itself.

not quite out in the open

UPDATE: I’ve decided to make this public, despite how vulnerable it makes me feel. We’ll see if I keep it that way.

In honor of Invisible Illness Week, I’ve decided to take this meme, though I don’t think I’m quite ready yet to have it out in the open. We’ll see; maybe in a few days or weeks or months I’ll change my mind.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: psoriatic athritis.
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: not being able to do everything I used to on very little sleep. I’ve fought against adjustments for a long time, but have finally decided that making them doesn’t make me weak.
5. Most people assume: that I’m not sick because I don’t look it.
6. The hardest part about mornings are: getting out of bed. Though it’s gotten better since I’ve been put on Enbrel, my morning stiffness used to be so bad it would take me an hour to physically get up. Now, I fight mostly against fatigue.
7. My favorite medical TV show is: a tossup between House and Scrubs.
8. A gadget I couldn’t live without is: my iPod for the long drives to medical appointments and lonely waiting rooms.
9. The hardest part about nights are: the pain in my joints and muscles.
10. Each day I take __ pills & vitamins. (No comments, please): Six, at the moment, plus a weekly injection.
11. Regarding alternative treatments I: am on the fence. I’m willing to try pretty much anything that might help, though.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. There are drawbacks to each. I think people would be more compassionate with a visible illness, but I like having control over who knows about this and who doesn’t.
13. Regarding working and career: It does make things difficult. I told one of my bosses recently, and it’s made things a bit weird. I haven’t told those at my other job, however.
14. People would be surprised to know: how thankful I am for the compassion of my friends and family, how much it acts as a buffer between me and those who do not understand.
15. The hardest thing to accept about my new reality has been: that I have a new reality, that I am sick and that there are things I cannot do anymore.
16. Something I never thought I could do with my illness that I did was: work retail again. I never thought I’d physically be able to stand on my feet for up to 9 hours per day, but I can, with the help of medications and judicious breaks.
17. The commercials about my illness: are pretty much non-existent.
18. Something I really miss doing since I was diagnosed is: going out dancing.
19. It was really hard to have to give up: hanging out with friends as much. I miss that terribly.
20. A new hobby I have taken up since my diagnosis is: photography.
21. If I could have one day of feeling normal again I would: dance all day long and wear the fiercest, highest pair of heels I could manage..
22. My illness has taught me: patience, compassion and the value of walking a mile in someone else’s shoes.
23. Want to know a secret? One thing people say that gets under my skin is: you don’t look/act/seem sick. I know I don’t. I’ve taken pains so that I don’t. But I am.
24. But I love it when people: treat me the same way they did before they found out I was sick.
25. My favorite motto, scripture, quote that gets me through tough times is: “The pain it won’t even cross my mind, there’s wonder in everything. The rope gets loose and the chains unbind, and I can do anything. Hope, it’s the light that strikes, that burns inside of me. It’s a blinding light, but somehow I can see, again.”
26. When someone is diagnosed I’d like to tell them: it’s going to be hard, but get a great doctor that you trust and that listens to you, instead of just prescribing whatever he feels like and hurrying you out the door.
27. Something that has surprised me about living with an illness is: how many other people are doing the same.
28. The nicest thing someone did for me when I wasn’t feeling well was: come visit me to take my mind off of it for a few hours — and everything my husband does for me, everyday.
29. I’m involved with Invisible Illness Week because: I think it’s an important cause.
30. The fact that you read this list makes me feel: vulnerable.