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.
Advertisements

an attitude of gratitude

With Thanksgiving just around the corner (and in October, as it should be), it’s a good time to think about things for which we are thankful. Granted, there’s never really a bad time to count your blessings, but it’s easier to do in some areas of my life versus others. I’m thankful for my husband, my pets Remy and Otis, used book shops, thrift stores, the flea market, vintage-inspired cabinet pulls, fun jewelry, my husband, semi-colons, sweater weather, good friends, apple cider, flowers, second-graders, my husband, good perfume, frozen yogurt, caramel anything and anything by Kurt Vonnegut.

But finding the blessings in chronic illness—without sounding insufferably dull or unbearably sanctimonious—now that is a challenge.  Where is the upside of feeling like crap everyday? Well, when put like that, there may not be one. But I am a firm believer of finding the silver lining in every cloud. So, while I would have loved to be able to learn these lessons some other way than having psoriatic arthritis, that is my lot in life and so I will play the hand I’ve been dealt. That is something for which I am grateful: the ability to find the good in an otherwise bad situation. I have learned to practice patience, to cut myself and others some slack, to live at a slower pace. I have found an amazing outlet in blogging and connecting with others through the internet and through mentoring those with psoriasis and psoriatic arthritis.

There is much in my life to be grateful for, and I’m glad to take the time to examine that, to see all that I have been blessed with and to give thanks.

friendship is rare

Guys. I was so down about how all-around gross the Percocet was making me feel, I forgot to revel in what was in all honesty a pretty awesome weekend.

Friday morning I met up with a friend who is leaving the area. We grabbed coffee and a croissant (her) and tea and a chocolate croissant (me) from our local grocery co-op. Then we sat outside for awhile and just talked about all kinds of things. It was great to see her, especially since she’s going to be time zones away. Since she’ll be driving nearly across the country with two small-ish children, I hope she has a safe and not too stressful trip.

Friday afternoon, after lunch with my boss and a former employee, I left work early to take a nap. This, friends, was a concession to the psoriatic arthritis. I knew that if I didn’t, I wouldn’t have had enough energy to go home after a full day of work and sit on the couch. So, I napped. And it wasn’t one of those terrible naps; you know the ones. You fitfully doze in and out of sleep and wake up hours later feeling more exhausted than when you started. This was an awesome nap.

Anyway, a few hours later I woke up and my husband made me a lovely mug of tea with some honey. Somehow, he knows better than I do how much honey I take. Whenever I make it, it’s always too sweet or not sweet enough. But, that aside, I make some of my delicious Caesar salad with the homemade dressing and headed out to a friend’s apartment.

Now, apparently since I left my part-time retail endeavour a few weeks ago, a ton of people have quit or will be quitting. (I won’t lie; this fills me with just a smidge of malicious glee.) So, one of the few that are left decided to host a potluck and invite a bunch of people from the job.

It.

Was.

Awesome.

Ironically enough, when I was working that job (plus my 40-70 hour per week full-time gig), I wouldn’t have had time to hang out with all of my great co-workers. But I was there, laughing and joking and chatting it up with a bunch of lovely people. I was one of the first to arrive (around 7 p.m.) and one of the last to leave (around 2:30 a.m.). I don’t think I can overemphasize how impossible it would have been for me to a) be up that late, b) been engaged with that many people and c) felt as normal as I did had I still been working two jobs. Even so, I felt pretty luck that my PsA decided to take a hike for the night.

Sure, I paid for it the next day and the next, and I’m still paying for it. Sure, I paid for it the next day when I couldn’t even handle 1.5 hours at the mall with another friend from out-of-town who was visiting. (Seeing her was wonderful as well.) But it was totally worth it. I would do it again in a heartbeat. Seeing people other than my co-workers and , as much as I love him and love spending time with him, my husband was pretty restorative and made me feel more like myself than I have in a long time.

So, here’s to a great weekend with lovely friends and all of the things we do that may hurt in the short-term but are so worth it in the long run.

(Image via We Heart It.)

me first

I met Nicole through my job. (I don’t know if she read my blog or knew about it before now, but I bet she’ll be able to figure out who it is. If so, hi!)

She is the one who introduced me to the idea of People First Language. It’s an easy enough concept, though one that will require a pretty radical shift.

Instead of saying, for example, Adam is autistic, as if it is a trait like brown hair or blue eyes or freckles, you’d say Adam has autism. Adam, then, is not his diagnosis.

I would say the same thing applies to others with illnesses or limitations that may lead them to be considered “disabled,” even if they don’t consider themselves to be.

We may not be able to do certain things the way we used to, but we’re still people first. I know I don’t define myself as PSA. When I think of what makes me me, that’s not usually something that comes to mind, though even I’ll admit it has molded me into becoming the person I am today.

But.

I am lucky and unlucky, in that most of the time PSA is invisible. I don’t use a wheelchair, I don’t have features that give anything away, I don’t require extra time to take a test. But, there are things I have to do differently than anyone else. And maybe that makes me sensitive to the idea of People First Language, to the idea of recognizing people for who they are, not what they have or what they can’t do.

But I think it’s a great idea, a wonderful cultural shift, and I’m glad I learned about it.

So: Thanks, Nicole.

Jon Foreman: Goodness Precedes Greatness: A Call For New Heroes In Troubled Times

Jon Foreman: Goodness Precedes Greatness: A Call For New Heroes In Troubled Times

Posted using ShareThis

Read this. Really.

Jon Foreman, front man and guitarist for Switchfoot, makes a really great point: We need to be the greatness we seek.

There is so much to be discouraged about, so much badness in the world that it would be easy to to get dragged down into the mire and muck with those who would have us join them down there. I know it would; I feel the tug just as much as many others, and perhaps more than most. It’s hard to do good things, and it’s hard to go the extra mile to rise above.

I get it. It’s hard.

But that’s what makes it worthwhile. To paraphrase Tom Hanks in “A League of Their Own,” the hard is what makes it great. That hard is what makes it good. It’s essential to go that extra mile; it’s necessary to fight the good fight. I’m gearing up myself for one, even though I am afraid it will do more harm than good, that it’ll cost me too much, more, perhaps, than I’m willing to pay. I’m getting over that. I’m trying to heed my call to goodness.

In the meantime, I’m trying to be good in my every day life. I’m trying to be slow to anger and quick to forgive. I’m trying to do unto others and turn the other cheek. I’m trying to not worry and be happy. I don’t know if it’s making a difference in anyone else’s world, but it’s making a difference in me.

Fear is a terrible thing, unchecked. It can make us do things we would not otherwise do; it can make us fail to do things we know we should do. It’s an equalizer: Everyone has been afraid at some point in their lives. Even the brave feel fear. Courage is not the absence of fear; instead, it is moving forward in spite of fear.

I am not brave, but I am trying. We’ll see where trying takes me.