spoonie envy, or why my disease is worse than yours

I overheard something that makes me me angry, frustrated and really sad all at once. A woman was talking about her rheumatoid arthritis, something a (younger) family member has as well. But then she said, offhandedly, “Oh, her RA is nowhere near as bad as mine.”

I have several problems with that statement.

First, how can any of us really know the pain someone else endures? Most of the time, I look—and act—100 percent pain-free; many would not guess that I have psoriatic arthritis, that I’m multiple drugs just to keep me functional though hardly without pain. Since none of us can actually slip into another person’s skin, not a one of us can say with any certainty, “My pain is worse than yours.” Period.

Then, of course, is the fact that it’s not as though it’s a competition, as if there’s only a finite amount of pain in the world that must be gobbled up in order to garner the sympathy of others. The fact that someone else is hurting doesn’t actually have any impact on the amount of pain I’m in—which is why I’ve never understood when people say, “Oh, you shouldn’t complain. [X person] has it sooo much worse than you.” I always want to bop people who say that on the head; my aches and inflammation aren’t conditional upon those of someone else. My pain doesn’t diminish because someone hurts more.

But perhaps more import than both of those points is this: We could all do so much good if we weren’t so concerned with who gets to wear the pain tiara or with maintaining the division of diagnoses that run between us. Separately, those of us with various kinds of autoimmune arthritis—or even just autoimmune diseases—don’t have the numbers to have as much clout as, say, Susan G. Komen for the Cure. But together, we number in the millions; the many can do more than the few. Why not pool our resources so we can really get some stuff done? Imagine if as many people who donate for breast cancer research or to the American Heart Foundation knew—and, more importantly, cared—about autoimmune disease. That would be huge. But we’re certainly never going to get there—or it will be a long time coming—if we can’t all work together.

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brace for impact

Today was supposed to be a good day.

The weather’s nice. It’s Friday. I bought myself some sunflowers at the farmer’s market, and they’re making my little office cheerful and bright.

But then some jerk guy decided to back up into my car.

(OK. I have tried twice now to get WordPress to post the full version of this blog. Hopefully third time’s the charm.)

Luckily, no one was injured and the damage to my car is minor. Things could most certainly have been worse. But it’s brought something into my life that I just don’t need right now: more stress.

I can feel myself on the edge of a flare; I feel as though if I stray to far to the left or right, I’ll plunge on down into one. To prevent that, I’d been trying to take it easy and to really take care of myself: eight hours of sleep per night (that one can be tricky), full compliance on meds, gentle workouts, good food. But all the self-care in the world won’t prevent someone else from blundering in and making a mess. And that’s what this guy did when he hit me; of course, he’s making it worse by trying to come up with different scenarios of how this was my fault that he backed his car into mine, but that’s another story.

As always, I can’t control how other people act, but my actions are up to me. And so I’ll be taking it easy this weekend and hoping against hope that I can pull myself back from the edge of a flare. Fingers crossed.

back on the ‘roid train

Newseum, Pennsylvania Ave. entrance, in Washin...

Image via Wikipedia (I love the Newseum!)

My impending trip to D.C. has forced me to take a long, hard look at how I’ve been feeling lately. And, if I’m being completely honest, how I’ve been feeling lately would best be described with a shrug and a “meh.” So-so. Comme ci, comme ça. And so on.

As much as I’m looking forward to it—and I so am—I know it will take its toll; there’s the five-hour (or more, if we hit traffic) drive there and back home, the walking around seeing museums (and the Newseum!) and just taking in the sights, the meeting new people and learning new things. All in all, a mix of stressors good and bad.

So, I’ve taken (and will take) some proactive steps to ensure that I can enjoy the trip the fullest and still be functional when I get back home (and have to go back to work the next day). The conference doesn’t start until Sunday, but I took tomorrow and Friday off, too, so the Professor and I can make a leisurely drive up. We’re staying with friends the first few nights, which I find less stressful—and more homelike—than staying in a hotel. The Professor bought me a comfy seat cushion for the car since the 2006 Honda Civic is not the most comfortable vehicle for drives totally more than an hour.

And—the biggest step: I asked my awesome NP for a quick steroid taper, which I started today. I’m not thrilled to be taking it in addition to the triple therapy combo of methotrexate, Enbrel and Plaquenil (and an NSAID and a muscle relaxant and an opiate, if I wasn’t so sensitive to damn things), but I know trying to force my way through will only leave me feeling worse in the end. And—combined with the oppressive heat and humidity (seriously: how is 100 degrees with 90-plus percent humidity normal for the end of May and beginning of June?)—I know just how bad muddling through can make me feel. I’m not going there again if I can avoid it.

So, to anyone who encounters me over the next two weeks: I apologize in advance for any crabbiness, waspishness or general cantankerousness. It’s the ‘roids talking.

 

#HAWMC day 16: i don’t think so

So, today’s Health Activist Writer’s Monthly Challenge prompt is to write a news report about the day a cure is found for psoriasis or psoriatic arthritis. Well, I tried, but since that’s what I do for a living—I’m an editor, and my paper is too small for me to not write, too—it went against every fibre of my being to manufacture quotes and lie in a news report. So I’m using my pass for today, because violating my journalistic ethics—even for something that’s not going into any newspaper and could not be construed as factual—was just too damn hard.

Instead, enjoy this awesome site I found of out-of-print book covers turned into T-shirts. (They’ll send a book to a community in need with every T-shirt purchased!)

#HAWMC day 14: truth or dare

There are plenty of misconceptions about autoimmune arthritis. We’ve all encountered them. For instance:

  • Only old people get arthritis. Wrong! I was 20 when I first experienced symptoms, and 21 when I was diagnosed with psoriatic arthritis (for the first time…).
  • All arthritis is the same. Wrong again. Osteoarthritis (the kind everyone thinks of when they hear “arthritis”) is very different from autoimmune arthritis. Within the category of autoimmune arthritis, there are many different kinds, too.
  • Arthritis is curable. I wish. There’s currently no cure for any kind of arthritis. Kind of sad, right?
  • You’re life is totally over now; all you can do is sit at home when you have arthritis. Not really. Sure, there are days when I feel bad and have to limit my activities, but I still work, I still have hobbies, I still volunteer. I have a very full life despite my arthritis.
  • Every day is the same for people with arthritis. Dead wrong. I may literally feel great one day and terrible the next. I might have a string of awesome days followed by a few terrible ones. I may have weeks or months or years dominated by bad days. The truth is I often don’t know how I’m going to feel on any given day—hell, sometimes on any given part of a day—until I get there.

What did I miss? What are some of your favourite (for lack of a better word) arthritis misconceptions?

And don’t even get me started on psoriasis misconceptions!

  • Psoriasis is contagious. Wrong-o! It’s an autoimmune disease.
  • Psoriasis is caused by bad hygiene. Wrong again. Still an autoimmune disease. Showering doesn’t make it go away.
  • Psoriasis is just a skin disease. It’s no biggie. Super wrong. Again, autoimmune disease. It’s also painful, itchy and embarrassing (mostly because of all the misconceptions!). It also puts us at risk for other diseases, including metabolic syndrome.
  • There’s a cure for psoriasis. Nope. I wish there was, though.

#HAWMC day 11: wikipedia is totally a source

Wikipedia: The bane of academics and the friend to journalists who need a quick and dirty lesson on something completely out of their field, like stormwater retrofits and non-infringing use.

But, as much as I may enjoy it professionally as a jumping off point (fledgling reporters, take note: It is never OK to use Wikipedia as a source in copy), the psoriatic arthritis entry kind of leaves me cold. It’s as sterile as a an operating room and about as pleasant to encounter. Seriously, take a gander. Back? Good.

If I were to have the endless spare time necessary to rewrite the entry on psoriatic arthritis, I would definitely make a few changes. First, why is it seriously the shortest medical entry ever? And the most sparse? There are lots of details that could be filled in, lots of areas that could use expansion. Starting with everything. Writing one line per subhead does not an article make. It should not take me more time to flippin’ braid my hair than it does to read some copy on a serious medical condition.

Also, could they have found a worse picture to showcase what PsA is? Oh, look, your feet are horrifically puffy and your nails look kind of funky. Other than that, it’s all sunshine and lollipops.

For a jumping off point (and a community-edited source), I guess it could be worse. But I would home someone interested in the disease would click on one of the few links to find something, somewhere that was a little bit more in-depth. Like a children’s book or a comic strip.

#HAWMC day nine: worth overdoing

Today, I really overdid it.

All week, I could feel  my body fighting something off. I was fatigued and achy. My throat become sore later in the week. And then, like an idiot, I took my methotrexate injection; I was so drained, I didn’t even think about what a bad idea that was.

And today, I woke up feeling terrible. But today was my local Walk to Cure Psoriasis, and I’d been looking forward to it for months; I wasn’t going to let a little thing like being sick get in the way. Plus, my mum and mother-in-law were coming in from out of town, and I didn’t want to disappoint them.

So, the Professor and I got up early, and somehow made our way over to where they were holding the walk. And it. Was. Cold. Friday was sunny, beautiful, with a high of 83. Sunday is supposed to be about the same. Today? I don’t think it got out of the low 50s, if even that. But we made it through the walk, and then headed out to get breakfast. That was helpful; I had fruit and a bagel and a big glass of freshly squeezed OJ. That perked me up a bit, so my mum, mother-in-law and I headed over to the local flea market. We all found some great stuff—including, for me, this great, 1940s citrine ring and a great, vintage needlepoint broach—before heading back to my mother-in-law’s place. The Professor and I had planned to stay for dinner, but the whole week of just relentlessly pushing myself and ignoring the signs my body was giving me came crashing down. We came home, and I went to sleep.

I don’t know why I keep doing this; I think I can just push through feeling terrible without any consequences. And that’s just not true. Even though I’ve had psoriatic arthritis for almost six years now, it’s a lesson this crazy disease keeps beating me over the head with: There are consequences for every action. Doing one things means I can’t do something else. And ignoring that gives me a day like today. Still, even if it wasn’t necessarily the best of ideas, I’m glad I went out to the walk; it was to see so many people supporting people like me. And that’s just what the doctor ordered.

#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!

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.

and doctor up this disease

On Monday, I discovered just how essential Enbrel is to my well-being.

Despite the fact that my mail order pharmacy has had the prescription for about two or three weeks now, they still haven’t gotten my order straight, and I’m still not set up for home delivery of it yet. That presented a problem Monday, when I missed a dose. Actually, my body thought I missed it Sunday, since I’d had to take my shot a day early the week before, while we were traveling. After being without it for one day—one measly day—I could feel my pain coming back. But, I thought it was no big deal; surely, I thought, the pre-authorization needed to get Enbrel had gone through my insurance company by then. I would just call up, get them to authorize the one-time courtesy refill I’m always hearing so much about and I would be OK until the mail order pharmacy thing got straightened out.

Wrong.

The reason the mail order pharmacy hadn’t contacted me for delivery was that they hadn’t received the pre-authorization from my insurance company. There was no real reason for that as far as I can tell when I phoned the insurance company to find out what the frig was going on. It’s just taking awhile, they said.

Well, that’s all well and good, but I needed my shot. I won’t lie: I was terrified Monday night, terrified of the idea of going back to how I felt a month ago. I didn’t want to go back to being in constant pain, so exhausted that I was pretty useless to everyone around me. I lay in bed crying that night, begging God to give me the strength to get through this. I can remember only a couple of other times I was as scared.

Luckily, my rheumatology team is incredible. My NP let me have three additional samples—that’s on top of the three she’d already given me—and the Professor picked them up from me, since he was still on winter break from school. I took it, and all was well again.

But it was a brutal reminder that even though I’m feeling better—well enough, in fact, that I wore heels twice this week—my psoriatic arthritis isn’t gone; it’s just hibernating. Eventually, one or more of the drugs will stop working, and I need to come to terms with that (again). I am grateful for the time I have feeling well or even better than bad. And I am strong enough to get through the times when I feel terrible (again).