#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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#HAWMC day 22: more cowbell

There are so many things I wish were actual factual prescriptions for psoriasis or psoriatic arthritis. Take shopping, for instance. I wish at my appointment next week, my NP would turn to me and say, “Nessie, you know what will cure what ails you? A trip to the mall or that awesome thrift store or the flea market. Girl, you need to get your shop on.”

Spending the whole day in bed reading would be another kick-butt Rx. “Nessie, no more of this working hard nonsense. For the next week, you need to spend the day in bed, reading all those books you’ve started but haven’t had time to finish.”

Ooh, I wish eating red velvet cake (or, better yet, red velvet cupcakes!) was a scrip. “We need two red velvet cupcakes over here—STAT!”

Getting dressed up and going out somewhere fun—like dancing or to a show—why can’t that be a prescription?

Clearly, we all need to ditch Dr. No Fun and start listening to Dr. Awesome—the kind of doc that prescribes stuff like I mentioned above. But we all know pretty much all of those things would not really make us feel better. (Well, not for very long, anyway. I’m looking at you, red velvet cupcakes.)

What do you wish could be a prescription? (More cowbell, definitely.)

#HAWMC day 13: ‘if a fair world was what you were looking for, he said, you had to appreciate irony’

In the world of patient bloggers, there’s a lot of talk about what’s fair. And I get, really. It’s not fair that we should have to deal with these diseases. It’s not fair that we should be in pain and exhausted and fight to remember words. It’s not fair that our loved ones should have to watch us struggle to do ordinary tasks. It’s not. I know.

I have days when I strive—and sometimes fail—to accept that. I have days when I just want to stand in the middle of a room, stomp my feet and shout, “But it’s not fair!” Or maybe, “Why me?”  Still, usually before long, I see the humour in that image and shake it off.

And honestly, to answer my whiny unhelpful question with another question, “Why not me?” If not me, then who? I don’t know if it’s just who I am or if the PsA and psoriasis had a hand in making me this way, but I feel like I’m a pretty strong person. Most of the time, I’d say I cope with this just fine. If not me, then maybe the person who would have gotten this in my stead wouldn’t be able to deal with it, wouldn’t have an amazing husband, great doctors, awesome friends and a boss that understands—or at least tries to.

I guess the irony in my life is that I’ve got it pretty good, even with dealing with a chronic, life-altering disease. So, maybe, instead of asking, Why me? all the time, I should do better at appreciating what I’ve got. (But don’t get me wrong—I reserve the right to have a pity party every now and then! It’s part of the membership perks of being a Chronic Babe.)

 

(Title via Pete Dexter‘s “Spooner.”)

#HAWMC day 10: no big secret

Since I’m still feeling under the weather, this will be a pretty short one.

What’s my big health secret? The one thing that people think I won’t say but totally would, if asked?

Well, that’s easy: I am sick of being a model patient and still feeling crappy. I’m sick of taking my pills on-time and as directed, sick of sticking needles into my stomach and legs, sick of gentle exercise and eating well—and for what? So I can come down with my fourth cold in as many months? So I can be exhausted all the time? So I can pay dearly for something as innocuous as going to the flea market with my family?

Hmph. And, yes, I am a grumpy gills. That’s another not-so-much-a-secret secret.

#HAWMC day eight: why do you ask?

A plague of questions

Aren’t you feeling better yet?
Why don’t you try this wonder drug?
Or this natural cure?
Or this shiny, fabulous snake oil?

Don’t you feel better yet?
How can you be fine one day and bed-ridden the next?
How can each day be so completely different?
How can each day be so completely the same?

Are you still sick?
Are you sure you’re not faking?
Are you sure you’re not exaggerating?
How am I supposed to help you when you don’t ever stay better?

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.

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.

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.