in the mood

Today has been a pretty average day: I fought with my alarm for 20-plus minutes before finally giving into the inevitable got ready for work, spent a lot of time in front of the computer and on the phone and am at this very moment sitting around, waiting for a public hearing to start. The life of an editor is glamourous—except when it isn’t (which is most of the time).

But the life of a journalist is, perhaps unsurprisingly, not one that mixes very well with having a chronic illness. I stand for long periods of time. Or, I sit for long periods of time, typing away at my computer or editing proofs or reporters’ stories—or, as I am now, in an uncomfortable chair for a multi-hour meeting. I work long days multiple times per week (like today, when I had an early interview and a late meeting). I come into contact with a lot of different people—including students, since I’m in schools quite a bit—which means I’m exposed to a lot of different bugs. Those same people often tell me the wrong time to arrive somewhere, which means I spend a lot of time standing around, waiting for things to begin  (which is incredibly frustrating). Late nights often mean taking injections at different times than my schedule. All of this means stress, which, of course, is bad for both psoriasis and psoriatic arthritis.

For now, the highs and lows of journalism are worth the potential harm to my health because, once again, I am working with people who are passionate about what they do, and that rekindled my flagging love of what I do. For now, that’s enough. And, in a weird way, I think that’s helpful for my overall health; it’s hard on the spirit to work, day in and day out, at something you hate. I am lucky enough that that isn’t true anymore.

And so, I guess that was just a complicated way to say I love my job again, and that’s a big part, I think, in why I’m feeling so much better. So, hooray.

so much to say

Which medicines to take—and whether to take them—is definitely a pressure I’ve felt as a person with two chronic illnesses: psoriasis and psoriatic arthritis.

Sometimes those pressuring me to take fewer pills and injections may have good intentions: take more vitamins, eat fewer nightshade vegetables, exercise more or differently, take XYZ miracle cure.

While I appreciate the (I hope) kindly sentiment behind those and other suggestions, I find the implications behind people’s repeated suggestions that I manage my diseases differently a little offensive, as if I don’t know what I’m doing. I have done the research into my treatment. I have looked into alternative and natural solutions, and I incorporate a mix of modern medicine and natural options. As I’ve mentioned before, I became a vegetarian in an attempt to help my symptoms; despite what some people think, I don’t eat pork, beef, poultry or seafood, and I’m working to cut out as much dairy and egg as possible, except if I know the source (i.e. I pick it up at my local farmer’s market and I can ask the farmer who produced it how he made it).

But my decision to do this was based on my own research, my own experiences. It was a decision that I made and was supported by my doctor and nurse practitioner. As it turned out, it was the right decision for me and has helped alleviate some of my symptoms; it certainly is not a cure and I would be insane to get off the drugs I’m on.

I think the ideas espoused by Dr. Lee are dangerous.

To wit:

JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time.

Oriental philosophy traces these negative responses to the child’s conception and gestation. It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences.
Stress, anger, medications, vaccinations, emotional problems, drinking and drugs all affect the child throughout conception and gestation. These factors cause the parent’s energy to be imbalanced and it is passed along to the baby, which presents itself as a weakness of some sort after the baby is born.
This is one of two philosophies behind all infantile or early-childhood diseases. The other stems from environmental problems, such as radiation from electricity, poisons or pollution in the environment and household, toxins in food, and poor nutrition.
The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection.

Telling people JRA is “usually temporary” is setting them up to blame themselves when their child—shockingly—does not get well with massage, good eats and love. Auto-immune arthritis is not the result of my parents’ bad energy or stress; it’s not their fault because they would not have wished it on me had it been in their power to prevent it.

This article is taking the nosy, think-they-know-better-than attitude that I’ve experienced from family and friends and people I barely know to the extreme. If massage, affection and herbs were enough to make me feel normal, I wouldn’t be taking multiple potential toxic drugs.

What would I like to say to all the people out there who think they know better than I do or my doctors do? What I would like to say is neither politick nor productive. So, what I’ll say is this: You are entitled to your opinion as to what you think is the cause of my disease and what you think the best treatment would be. But until you’ve lived it the way I have, until you have felt the pain and exhaustion and fear, until you’ve felt the relief brought by these dangerous drugs and experience the indecision as to whether you should go on them or stay on them, your, perhaps well-meaning, advice is not worth much. Modern medicine—yes, the methotrexate, the ENBREL, the Plaquenil, the etodolac—is the only thing that allows me to get up every morning, to get dressed, to go to work, to be a good wife, to walk my dog, to do everything I do. Without them, without the right combination of them, I am in intense pain, I’m stiff, I can’t focus or remember the sentence I started just a few words ago. Without the meds, I would not be able to hold down a job, to be a productive member of society.

Yes, I do other non-medicinal things to increase my overall health: I’m a vegetarian, I do yoga. I am open to adding other things to my regimen, to my arsenal. And doing most or all nutrition or acupuncture or herbs works for you, that is wonderful. But it doesn’t work enough for me to cut out the drugs that allow me to function.

So, I guess that’s the biggest thing I would want the people who expound on their chosen “cure” to know is this: What works for one person won’t necessarily work for someone else. And what works for one person won’t necessarily keep working for her. Those of us with chronic illness have to be willing to try almost everything; but recommending the equivalent of a Band-Aid or sugar water for our very real problems doesn’t help. If you really want to help, stop talking and start listening.

(IU)D-Day

I finally did it. I  bit the bullet and got an IUD put in Thursday. Though I know there are several choices out there, I went with Paragard. (Apparently people on immunosuppressants shouldn’t use Mirena; who knew?) Except for the financial part (my insurance doesn’t cover contraception, apparently, because we’re in the Stone Age), it was an easy decision: I don’t do well on hormonal birth control, I’m on MTX and need highly effective contraception (hello drug used in abortions and can cause massive harm to a fetus!) and I don’t need to think about my IUD until a) we decide to have kids or b) it’s 2021 and it needs to be removed. That’s right. It’s good for 10 years.

Getting an IUD just made sense for us, though clearly it may not be the right choice for everyone. With all the problems I had with hormonal birth control (hello no sex drive and lots of random mood swings!) and our desire to not have children for at least two years, it just made sense. Plus, it means I get to get off one drug. How awesome is that?

Getting the IUD inserted and the few days after were definitely an … experience. There’s a ton of stuff I wish I had known; it wouldn’t have changed my mind but I certainly would have been more prepared. And I like being prepared.

via http://comicallylarge.wordpress.com/

For example, I am used to needles. I give myself an injection of MTX and ENBREL every week. But the needle used for the pre-IUD insertion block? Sitcom large. That pictures is only a slight exaggeration.

Would I have backed out had I known a two-foot-long needle was going to be inserted into my bajingo? Nope, of course not. It would have been nice to have prepared myself for that eventuality, though.

Second: I was told to expect minor cramping after the procedure.

Minor cramping my ASS.

For the rest of the afternoon, I spent my time on the coach holding a hot water bottle to my abdomen and grimacing, curled up on the couch watching copious amounts of “Law and Order: Special Victims Unit” while mainlining lemonade and Cadbury Mini Eggs.

The Professor was kind enough to keep me fully stocked in anything I needed, even though he had plenty of work to do getting ready for his next lecture. I have never had such painful cramps in my entire life. Seriously, for the rest of the weekend, I stopped taking my prescription NSAID so I could ingest as much Midol as was medically advisable. (Random aside, why are there so many formulations of Midol? I seriously spent 10 minutes at the drug store staring at the shelf just lined with different versions of the same thing before closing my eyes and picking one, just so I could leave the store.)

Only two things really helped: Streak fries and, umm, well, I’ll let the cast of Scrubs say it for me:

That first five or six hours, I was in the bathroom so long I read an entire issue of National Geographic from cover to cover. I still am not really sure what that was about, but I’m glad that part is over.

The rest of the skinny on the IUD: I apparently can look forward to heavier periods and cramps from now on. The worst of it is supposed to be the first year, so I guess I’ll find out.

But even if all of that is true and even with the fallout from the first couple of days after the insertion, I’m still glad I made the decision I did; fewer pills and the increased likelihood that we won’t get pregnant (though we still will continue to use two methods of contraception, as is indicated for women of childbearing age on MTX) is no small matter. If this can help me get one step closer to normal, I’m glad I did it. Though, if I had been a normal, healthy twentysomething, I’m not so sure I would have even considered this. I guess that’s something I’ll never really know, though. So, with the life I live now—in reality—I’m extremely glad I did it. And even with all the quirks, I’d do it again.

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?

prescription for the winter blahs

I’ve got a bit of a secret: I hate winter.

I didn’t used to hate it, but ever since I moved to the South I have. Here, winter doesn’t mean snow and cozy layers; it means ice and rain and random 70-degree days. On days like today, which was miserable and rainy and cold, I like to do nothing more than to curl up in my pajamas with a good book and a mug of tea. Since I had to work today, that wasn’t going to happen.

I do have a few tricks up my sleeves for defeating the winter blahs, even when I have to work.

via WeLoveColor.com

Bright tights are definitely one of the headier weapons in my arsenal. I absolutely adore coloured tights, and they’re great to punch up an otherwise professional and conservative outfit. They also bright a smile to the face of pretty much anyone who sees them, making them a great grey winter day addition. (Seriously. Try to stay bummed out while wearing magenta tights. It’s just not going to happen.)

Hot beverages. Today, I went to my favourite local coffee shop and ordered a delicious soy hot chocolate. Hot cocoa or a nice cup of tea always makes me feel better on a cold winter day. Heck, they always make me feel better regardless, even if (especially if) I’m having a bad disease day.

Reading. Books are kind of magic; they take us to places we couldn’t ordinarily go. That’s pretty amazing. So, if it’s dreary outside (or, again, if my psoriasis or psoriatic arthritis are flaring up and I don’t really want to be myself, just for a little bit), I love to escape into books by some of my favourite authors, like Nicole Krauss or Jonathan Safran Foer or Kurt Vonnegut or C.S. Lewis.

Warm sweaters and TV. Even though the Professor and I don’t get cable anymore, we still love watching TV via Netflix. And it’s always fun on a bad day to just get into some warm and soft and veg out in front of the tube. That’s especially true when it feels like the PSA is more in control of what I can do than I am.

What’s your favourite cure for the winter blahs?

pampered

Is it Saturday, yet?

This weekend will be the first one in awhile that I haven’t had to work. Conveniently, my mum also doesn’t have to work Saturday, so she’s venturing out my way and we’re going to get some mani/pedis. Normally, I do my own nails every week (right now, they’re OPI’s Who The Shrek Are You? And, yes, they are Shrek-coloured), but it will be nice to let someone do them for me.

Doing something for myself is so important, even though I’m feeling more like my old self. I find it really easy to go not be so hard on myself when I’m feeling down or exhausted or in the midst of a flare. It’s so much harder to cut myself the same slack when I’m doing ok. But thanks to an awesome Christmas present from my dad (thank goodness for Spa Finder gift certificates), I can make sure I do just that.

an addition

30 for 30 5 days, 6 outfits

Image by karenthings via Flickr

Some of you may have noticed the new tab at the top of my header. (If not, no worries.) I’ve decided to embark on Kendi’s 30 for 30 challenge: 30 items of clothing (including shoes, excluding all other accessories) and no shopping. I’m on day two, and so far, I’m hanging in there. I’ve been sick with some kind of cold/flu/sore throat demon the last couple of days, and it was actually kind of nice to just have a few pieces from which to pick. It’s certainly made getting dressed so much easier.

But, I just thought I’d give those of you interested in what I wear every day a head’s up.

In other news, this sore throat has lead me to try to talk as little as possible; in fact, I’ve taken to whispering whenever I do have to talk, since it doesn’t seem to aggravate my throat as much. And it’s kind of funny, but a throat that feels raw—as though someone rubbed it with rough sandpaper—makes me consider all my words, think about whether I really want to say what I’m about to say. It’s something I have a tendency to not do, usually; I tend to speak without thinking, a very bad habit.

Who knows; maybe this sore throat is a good thing, eh? The beginning of a new era. But, honestly? I would settle for thinking before I speak just some of the time.