Do cortisone shots actually make things worse? – NYTimes.com

Do cortisone shots actually make things worse? – NYTimes.com.

Since I have tendonitis, it came as something of a shock to find out that cortisone shots might not be a good idea and, in fact, might make things worse. Say what?

I’m certainly willing to wait and put in the work if it means I’m less likely to be back at square one in six months. It’s a lesson we Chronic Babes learn quickly: There is no magic pill that will make everything better.

Oh, and another one: Watch out for side effects.

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not so young, not so fast

via National Psoriasis Foundation

via National Psoriasis Foundation

World Psoriasis Day is today, Oct. 29. The focus this year is something near and dear to my heart: the challenge of childhood psoriasis.

While I may have been too old for teddy bears when I was first diagnosed with psoriasis, I was pretty young: about 14 or so years old, a freshman in high school.

I was lucky to have not been teased so much for the fact that I had psoriasis as much as I was for being Canadian, but it was still there. I was certainly luckier than some kids: 38 percent of kids who responded that they had been bullied in the last six months (in a National Psoriasis Foundation survey) said the bullying was the result of their psoriasis. When I first read those statistics, my heart broke a little. Sure, kids can be cruel, but this kind of ignorance is inexcusable.

What’s also devastating is this: There are no FDA-approved treatments for children with psoriasis. None. Zip. Nada. And every year, 20,000 children under the age of 10 are diagnosed with psoriasis. I know from experience that there wasn’t a lot offered to me when I was diagnosed. My dermatologist at the time didn’t tell my mum, who came to the appointment with me, and I that it was an autoimmune disease; in fact, he let us leave the appointment thinking it was a reaction to a new shampoo. I’m pretty sure the only thing he gave me was something tar-based that I was supposed to leave on my head all night long and rinse out in the morning. It smelled awful, it made my hair look and feel terrible and it didn’t do me a whole lot of good. I remember at subsequent follow-up appointments, he blamed me because my plaques hadn’t cleared up yet, saying I must have not bee using the topical properly. At the time, I believed him, even though I followed the prescription directions to a tee. Now, of course, I know that wasn’t the case. Psoriasis doesn’t always respond to medication and it certainly was not my fault the plaques were still there by the next time I saw Dr. Jerkface.

I don’t think kids or people of any age should have to go through that or the teasing or, yes, bullying of their peers. Enough is enough. Kids are being forced to grow up so damn fast these days and those with chronic illness have that extra burden on their shoulders. We should be doing all we can so that they can stay young and innocent and carefree as long as possible.

thinking about tomorrow won’t change how i feel today

One of the things I love most about the town in which I live is the chance to see tons of awesome bands for pretty cheap. Though I haven’t taken advantage of this as much as I’d like, I did get to see Matt & Kim (with rapper Donnis) earlier this week.

And let me tell you something: It. Was. Awesome.

I went with a friend of mine and, of course, we had to start the evening with some tasty frozen yoghurt—I opted for cheesecake, strawberry and chocolate fro-yo with sliced kiwi and bananas, M&Ms and three gummy worms. Delish.

Then, we headed over to the venue. Since it was sold out, there was zero parking close by, so we drove a few blocks away and hoofed it back. I won’t lie; I was more than slightly concerned about the amount of walking, but I told myself it would be fine.

We got in, got ourselves some drinks and found, to my dismay, at least, there was nowhere to sit. And so we stood, waiting for Donnis to start (and not expecting him to be a rapper, but we was pretty decent), through his set and through Matt & Kim’s. The duo was awesome, just Kim on drums and Matt on keyboards. Kim was ferocious, propelling the songs forward, and Matt just spit the words out with a confidence missing in their first effort.

After the set, my friend wanted to stick around to meet them, which we did. Matt was good-looking enough that pretty much every girl was hitting on him, giggling, touching their hair, flashing some cleavage. He does give pretty kick-butt hugs, though, and both of them stuck around until every fan who wanted a picture or an autograph or a quick chat was satisfied.

After all that, I didn’t get home until about 1 a.m., after standing on my feet for much longer than I would have liked. I could tell while I was standing there, rocking out, that I was going to pay for it later, and I have. I’m still sore enough that I would like nothing more than to filled my bathtub up with Icy Hot and just lay there for a while. Even so, it was totally worth it. I haven’t been to a show in a tiny, hole-in-the-wall club in so long, and I missed it.

I can only put off doing things I love for the sake of my health for so long before I start feeling like I’m missing out. Some days, even when I know I’m going to feel crappy after, I just have to do it anyway, to feel like a normal 26-year-old, if only for a night.

belly ache

A Westclox Big Ben Clock

Image via Wikipedia

It’s not often that after a rough day, I’m given exactly what I need to feel better. But let me rewind a bit. Monday night, before I went to sleep, instead of the muscle relaxant I take to help me sleep, I took half a pain pill (Darvocet, this time), hoping it would give me the pain relief without the side effects. Instead, I woke up Tuesday morning in an incredible amount of pain and stiffer than I am most mornings.I thought that would be the end of it, but I was wrong again.

About 10 hours in to what turned out to be a 15-hour day (9 a.m until 12 a.m.), the lightheaded-ness that had plagued me all day turned into nausea and then the, uh, natural outcome of nausea. I struggled through the next few hours and finally made it home around 12:40. When I finally fell asleep around 2 a.m., I was not looking forward to Wednesday. But, around 5:30 a.m., my husband woke me up because he had an awful migraine and wanted me to send out an e-mail to his students canceling class. After I did that, I e-mailed my big boss (the boss above my editor) to let him know I would not be in.

And then my husband and I slept until 12:30 p.m. and would have slept longer had I not needed to feed the cat and the dog.

It. Was. Awesome.

Even though I spent most of the rest of today trying to eat enough so that I didn’t feel nauseated but not so much that I threw it all back up (MAN, was I wishing for some ginger Gravol!), it was really nice to be able to spend a day with the mister and the “kids.”

So, thanks, incredible sensitivity to pain meds for giving me a day to hang out with my family.

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

pull out some hope for me

Yesterday, my body punished me.

I had a conference to go to Wednesday, about an hour away from my house. I didn’t think it would be a big deal, to sit in my car for two hours. Since it was mostly on country roads, I did have to shift a little more than usual (I drive a manual, which let me tell you is super fun when you’ve got tendonitis in one hand and can’t use it), but it was nothing extraordinary. I figured I would be just fine.

Boy, was I ever wrong.

Yesterday was definitely a bad pain day. Everything hurt. Everything. It was one of those days that made it hard to be positive, that made me tremble at the audacity
of making plans for the future that included anything more than huddling on the couch in my pajamas, eating comfort food and watching any TV show or movie that didn’t ask me to think about what I was seeing.

I don’t know what about Wednesday knocked me so hard on my ass or why it was so very difficult to just push through. I spent the day yesterday on the verge of tears, counting down the seconds until I could come home. It was bad enough that I popped a Darvocet before I went to bed, hoping it would at least let me muddle through today with a little more grace.

Today, I wouldn’t say I feel wonderful, but compared to the grumpy, crotchety old lady I was yesterday, I am feeling pretty OK. Sure, I feel a little bit loopy and on the verge of nauseated from the pain pill, but today I can participate in my own life, again. I can finish putting up Halloween decorations, clean my apartment, type up a story (one-handed, but still faster than the average bear). I could walk down to my local coffee shop and get a delicious iced latte. I can dream about the future. And if I have to feel vaguely unsettled, well, that’s a worthwhile trade-off.

I was reading through the archives on Lindsay’s blog and she said something to the effect of, “Chronic illness can only take from you what you let it.” Well, amen, girl. I’m not going to let it take anything else. That and another verse sent to my inbox the other day just changed my perspective right around.

God will let you laugh again; you’ll raise the roof with shouts of joy. Job 8:21

october’s got those orange eyes, but somehow i still lost sight

Wow, October already. I can’t believe how this year has flown by. In a way, that’s both good and bad thing. I love the fall and am so excited for crisp weather, colourful tights, the state fair and caramel apple cider. But, I had hoped that by this time, I would be feeling better. I thought I’d have the use of my left hand back (incidentally, typing with one hand is super, ridiculously slow), that I wouldn’t walk with the speed (and grace) of an unsteady toddler, that I would feel more healthy scalp than psoriasis. Not so.

At my last doctor’s appointment, we increased my dose of MTX, so now I’m wading through the delightful oral ulcers and a tongue that feels like someone took a razer to it, which are finally, hopefully subsiding. And, after a couple of weeks of feeling yucky, I’m back on the Plaquenil (or rather, the generic hydroychloroquine) in the hopes some triple therapy (in my case methotrexate, hydroxychroloquine and sulfasalazine) will give me some relief.

At work, I’m dealing with a formerly nice gentleman who has turned into a bit of a bully because he doesn’t like something I wrote. It’s actually been quite stressful receiving multiple e-mails a day over the last week saying what a bad person I am. And I was OK with it all until the most recent e-mail, which was just hateful. It’s all the more surprising because I really don’t understand where it all is coming from and the person in question doesn’t seem too willing to explain.

So, I’m having a bit of a hard time reaching for my positive attitude. Or maybe I am reaching for it, but it’s just not there. I just feel worn out and beat down—an attitude at odds with the ridiculously beautiful, sunny day, which is all the more welcome after nearly a week of rain. Maybe I just need a hug or to snuggle with my dog or to receive a few e-mails a day over the course of a week saying what an awesome person I am. Regardless, I think I’m going to go for a walk outside and try to gain some perspective. And maybe a caramel apple cider.

UPDATED TO ADD: For all those people who have ended up here by typing in the song lyrics in the title (sorry!), it’s “Broken Horse” by the Freelance Whales.