#HAWMC day 25: red ink

Today’s challenge is to find an old post and edit it, revise it to how I would write it today. I like to think that I’m a fairly good writer; after all, I do it for a living. But even so, there’s always a way to make something better. Here’s the post I chose, and here is the new version:

This week’s Patients for a Moment question is easy to answer and profound at the same time: Who would you be without your illness?

That question is kind of simple but stunning in its implications. Unlike a lot of the bloggers who responded, I remember a time when I wasn’t sick; I remember being able to wear heels all week or stay up all night reading or go a few days (or weeks) getting little sleep, without any consequences. I remember when my life wasn’t filled with doctors visits, lingering pain and sleepless nights. I remember a time when I didn’t have to think about questions like this.

I noticed a lot of the others posted blogs about how they were glad for their illnesses, glad for the compassionate, strong, caring people it made them. Maybe I’m just not at the point they are at with accepting their illnesses and what it’s taken away, but I wouldn’t say I’m glad. I wouldn’t say the good its brought out in me has necessarily been an even trade with what I’ve lost. There are a lot of things I miss: not worrying about what I eat, not worrying about how much I work or how much medications cost and what I’ll do when my patient co-pay benefits run out on the only thing that seems to make a difference. I miss somethings some things I’ve never had and am not even sure I want, including the ability to talk about having kids without discussing how pregnancy will affect me and whetherafter going through nine months off my medicationsI’ll be in any shape to take care of a newborn. (Answer: Probably not.)

But, I am thankful, too, for what I have been able to accomplish, despite my illness. Even though some days I’m so drained I can barely make it through, even though I’m still recovering from a Thanksgiving to Christmas where I worked every day—with literally no days offI’m proud that I work in the field I do, with people out in the world who don’t know what I’m going through and who think what I produce is great, regardless. I’m good at what I do despite my illness. That’s a victory, no matter how small it may seem on days where I can’t even type because my fingers are so swollen, when sitting hurts as much as standing, when my brain is so foggy I can barely string three words together, much less write an article worth reading.

Who would I be without my illness? I’m not really sure that question is even productive, much less truly answerable. I am who I am because of my illness, at least in part. I couldn’t really say who I would be without it.

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keep fit and have fun

Netflix

Image via Wikipedia

All of us with chronic illness know how important it is to at least attempt some kind of fitness regimen. Psoriasis has been linked with metabolic syndrome, hypertension and diabetes, among many other things. Exercise can at least help reduce the risk of those things, along with eating properly, medication and more.

For me, exercise is important. I don’t do it as much as I should, and it’s so easy to get off track. There are a million excuses, even excluding the usual suspects (laziness, too busy, procrastination): flares, brain fog and mind-numbing fatigue, to just name a few.

So, what’s a girl to do? I try doing things that are enjoyable, to at least increase the probability that I’ll make time to exercise. I do yoga at home; Netflix even has a yoga for aches and pains available through instant stream that is incredible. It’s also about 45 minutes long, so I definitely have to plan that one into my day. Now that it’s warming up and the flare that plagued me last year has (mostly) eased up, I can kept back into my morning walks with my dog and joining the Professor on evening walks with Otis. I really enjoyed getting up and outside before most people were out and about; it gave me a good amount of time to just centre myself and get ready to start my day.

I think exercise needs to become a must-do for me; none of this putting it off to a later that never comes. I need a little accountability, I think, or maybe a reward system, like Elisabeth has. Anyone want to be workout buddies?

the bare necessities

I love the next Patients for a Moment topic: things that making living with chronic illness that much easier. While the number one thing on the list would be the Professor, he’s not exactly a thing. But I digress.

  1. My laptop. Without my little four-year-old MacBook, I would be a lot less connected to the world. When I’m not feeling well enough to go out, I can still hop on Twitter or Facebook and find out what my friends are up to. I can look up new symptoms or research possible therapies. I can post on this blog and read others’ thoughts. I can watch silly videos on YouTube to raise my spirits or check out Last.fm to find my next favourite musician.
  2. My Keurig coffee maker. Though it has been on hiatus lately—we need to run vinegar or something through it to make our hot beverages taste yummy again—it is perfect to make a quick cup of coffee or tea. It has K-cups with a predetermined amount of coffee/tea/hot chocolate in it. Just pop it in, pick your beverage size and 30 seconds later, it’s ready. It’s so easy, even me in the grip of a terrible brain fog can operate it flawlessly.
  3. Cardigans. The Professor thinks I have a problem; nearly every sweater I buy is a cardigan. I can’t help it; they are absolutely perfect. They’re stylish and professional and fun. I can add one to an outfit, giving me a layer to remove if I get to hot or add if I get cold. Even on a day I’m feeling terrible, I can throw one on, belt it and still look good while being comfortable.
  4. The Body Shop’s Cottonseed Curl Booster. (Disclosure: While I did receive this product for free, it was as one of The Body Shop’s Love Your Body members, not as a result of this blog. I received nothing for the review.) Normally, I straighten my hair. That requires a blow dryer and a flat iron. However, there are days when I can’t easily lift my arms over my head, days when I don’t want to fiddle with heavy styling tools to make my hair look nice. So, I’ve been searching and searching for something to make my wavy hair look good naturally, and I’ve finally found it: the Cottonseed Curl Booster. All I have to do is wash my hair as I normally do, scrunch the product into my hair and go: no brushing, no fiddling around, no blow drying. It makes my hair wash and wear.
  5. The Scotch Pop-Up Tape Dispenser. This is the only way I get through wrapping presents, without having to fiddle with tape and a lot of cursing.

These are, of course, just a few of the things that help me through the day. But, today, they feel like the most important ones.

all i have to give

via We Heart It

Giving back is hugely important to me, especially now that I have a chronic illness.

Before my slow downward turn, I volunteered at a local animal shelter; the same one, in fact, where the Professor and I eventually adopted Otis. I worked with the cats and was on the education committee, bringing dogs into elementary schools to teach kids how to respond appropriately to animals. I loved it, but it was a lot of hard physical work, so I eventually had to give it up.

Now, I teach Sunday school to a group of kindergarten-age kids, I volunteer occasionally with the middle school youth group at my church, and, as I’ve mentioned before,  I’m a peer mentor for the National Psoriasis Foundation. I enjoy these for different reasons, I guess in the end it really just boils down to two: I like helping people, and it makes me feel good.

Being around small children is rejuvenating, in a way; they are so filled with energy and life and light. The kids in my class love to laugh and draw and play Memory. They find the simplest things so joyful: colouring a picture, playing outside, talking about their pets and families. But the subject matter is also, of course, really wonderful to talk about. Talking to kids about faith—and about how they see God—is just really encouraging. I always walk out of Sunday school with a smile.

Now, volunteering with the National Psoriasis Foundation moves me in a different way. I’m connecting with people who, like me, have psoriasis or psoriatic arthritis or both. Some are older; some are younger. But we’re all bound together by one simple fact: We know what it feels like. I’ve had psoriasis for more than a decade; PsA joined the party about seven years after my initial diagnosis. I’ve had good doctors and bad doctors. I’ve been on drugs that helped, drugs that hurt and drugs that did nothing at all. The common thread is that I have been through what they have been through. Though people in their lives may be sympathetic (or not, unfortunately), I can be empathetic. That is very powerful. None of us are alone.

Volunteering, getting involved in whatever way I can, it’s essential. In giving to others, I also receive. And for someone who always has to worry about counting spoons, getting a few back every now and then feels like a blessing.

litany against fear

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

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.

PFAM: awareness edition

via Dear Thyroid

Patients for a Moment is up over at Dear Thyroid! This time, the question dealt with awareness:

How has your disease changed your view of awareness? Do you feel that raising awareness is important? Do you feel the need to educate others about your disease? If so, how do you go about it?

There were some really great responses this time.

So, what are you waiting for? Go check them out!

waiting for my real life to begin

Awareness is a funny thing, one of the many things that changes once you’ve been diagnosed with a chronic illness. The healthy have the luxury of not needing to raise awareness or not needing to learn how to be an advocate or being able to stay quiet. But I think it goes deeper than that.

Even in the first few years of having psoriatic arthritis (and certainly for the years I had psoriasis — which I hadn’t even been told was anything other than a skin condition), I had no need, no desire to sound the alarm and marshal the troops to raise the public profile of PsA. I didn’t blog about it. I didn’t research it. I didn’t really talk about it. I certainly didn’t make any concessions for it, didn’t allow that things were going to be different for me now.

But raising awareness of my own illness in particular and chronic and invisible illness in general has become important to me, especially now that I’ve allowed myself to be angry and grieve and to slow down and (try to) be OK with not being the same girl or doing the same things I used to be and do. There are just so many misconceptions about chronic illness and arthritis, it just seems impossible to not add my small voice to the chorus to give good, real information. It’s important to stand up and to bust through the ignorance that allows people to think arthritis is a disease of the elderly and that being sick means looking sick and that I could get better if I wanted to.

I also think it’s important to help those who are struggling, who are newly diagnosed or who just want to feel they’re not alone. There are so many ways to do that: posting on message boards, chronic communities or on blogs; starting or participating in support groups; being willing to blog about what chronic illness looks like for me. But, I’m lucky in that the National Psoriasis Foundation has recently started up a really cool program: the Psoriasis One to One Mentoring Program. Mentors are linked up with those requesting assistance for peer support; we’re here to listen, to help (not to give medical advice, though!) and to just be there. We get it; we have psoriasis and/or psoriatic arthritis, too.

I think that’s kind of crucial. All the awareness-raising would be a little hollow if it didn’t allow us to reach out to one another. How can we expect others to care if we don’t care ourselves?

(Image via We Heart It.)

at the carnival

So, the most recent editions of both Patients for a Moment and the Chronic Babe Blog Carnival are up. Here are some of my favourite posts from the both of them.

For PFAM, the question was, “What keeps you going?” For the Chronic Babe carnival, it was, “How do you deal with the medical establishment?”

forward motion is harder than it sounds

At various junctures in my life — like when my husband was in the hospital and I commuted three hours every day to see him before I headed into work or when people learn of my chronic, incurable disease — what drives me to keep going, to get up every day and keep moving, even against terrible odds.

Well, maybe it’s just me, but I don’t really understand the question. It seems simple enough, sure, but I have a problem with the underlying assumption — that there is a choice involved in soldiering on. If there is, I don’t see it. If the choice — or “choice,” in my opinion — is between bravely marching on and giving up or abandoning someone you love, that’s really no choice at all.

For me, it’s a simple question of doing what I have to do. That doesn’t mean that it’s always easy. Some days (or weeks, if I’m honest) it’s harder to maintain forward motion, to put one foot in front of the other. Sometimes, I’d rather just stay put, feet stubbornly planted like a mule’s. But that never last long. I would rather push forward, moving toward a sometimes ill-defined, murky goal (be it remission, even a temporary respite from pain and sorrow or something else entirely) than wallow.

So, I guess what keeps me going is some combination of hope and duty. Hope for myself and those I love, that maybe the next day or the next week or the next year will be better, and duty because there are some things I feel obligated to do: I have a duty to those who try to keep me well — doctors and nurses and pharmacists — to at least try what I’ve agreed to try; I have a duty to my husband and my family to do what I can to make myself feel better; I am obligated to come into work, to do the job I was hired to do, so I can get paid to afford those doctors and nurses and drugs.

So, what keeps me going? Drive, maybe, or perhaps the refusal to say, ‘Uncle!’, to let something get the best of me if I can prevent it.

There are two big forces at work, external and internal. We have very little control over external forces such as tornadoes, earthquakes, floods, disasters, illness and pain. What really matters is the internal force. How do I respond to those disasters? Over that I have complete control. — Leo F. Buscaglia

(Image via We Heart It.)