Page 3

08Sep

How to be a tourist: Copenhagen edition

Wear good shoes. Bring a second pair of shoes. Invest in Compeed blister patches. Look out for cyclists. Apologize all the time when you can’t hear someone so they think you’re apologizing because you don’t understand their accent. No, really, look out for cyclists. Say “hi” with an I sound instead of “hi” with an E sound so it sounds like you’re saying “shark” instead of “hello.” Spend half your day at Tivoli. Photograph your food… The locals will give you really strange looks and it’ll brighten your day. Sweat. Smell terrible. Re: sweat. Wear whatever you want. People like to tell you not to wear shirts with logos or designs on them in Europe. “Europeans never wear that stuff,” they exclaim, ripping your “Boston” t-shirt from you and shredding it with their bare hands. It’s not true. I haven’t seen a shred of neon (thank God), but I have

2 mins read

07Mar

takayasus

Steroid Withdrawal & Emotional Fallout

Some time over the last two years, I’ve started to feel like a different person. In June of 2014, I started my steroid therapy for TAK. I started at 50mg a day, which is an incredibly high dose. I was on it for months before I started to taper off… And I stalled at 35mg for four of five months. In February 2014, I started tapering again, and it’s taken me over a year of messing with my immunosuppressants to find something that effectively manages my symptoms to replace the steroids. I’m currently on 3mg of Prednisone, tapering my way to 0mg… And I’m terrified. Over the last year and a half, I’ve become a different person. While it’s true that most of my more irritating personality traits have remained intact — my brain never stops, I manage to be the most insensitive when I’m trying to be cautious, I’m

3 mins read

27Jan

FAQ, takayasus

I still have a liver! Hurrah!

I wrote that title last week. I may have killed my liver this weekend. Jury’s still out. As we’ve covered before, I’m not really supposed to be drinking. I still do sometimes (see above). I try to abide by the rules set by my doctor — no more than two drinks every couple of weeks. But, as you can probably already tell, that’s a really easy rule to break. When I found out I couldn’t drink, I was actually pretty upset. I love beer. Like, love love love beer. I had just moved to New Hampshire, one of the best beer states, after enduring Oklahoma, one of the worst beer states (access to Santa Fe, Tallgrass, and Prairie excepted). And here I was, taking medication that doesn’t interact well with your liver, and denied something that I love. So it goes. Before I started taking my immunosuppressants, I had a few weeks of going

3 mins read

30Dec

FAQ, takayasus

An Update, re: The Health Stuff

In October, I posted about my weird and complicated health stuff. You’re welcome to revisit that for the full story. As this year comes to a close, I just wanted to share an update. I do this for two reasons, 1) it kills time, and b. it makes for an easy resource for when people have questions. So you’re still dying? As fast as you are, buddy! Or maybe faster? Or slower? Aren’t we all? Are you still stuck in bed? No! And it’s amazing! I switched drugs a few months ago. This new medication terrified me at first. I spent a good few hours being really anxious about starting them because it stays in your system a lot longer than my original meds; however, I’m responding much, much better. I can, like, stay up past 10pm on Saturdays now… and I can get out of bed when I want to! Granted,

3 mins read

22Oct

takayasus

“Encouraging News” Re: That Pesky Health Stuff

I received a good email from my doctor after my last MRI. I’ve been sitting on this for a few weeks because I didn’t know how I felt about it, which is weird. The message was simple enough, and I’ll paraphrase even further because science is boring — my inflammation has gone down since my last MRI in February. “This is very encouraging news,” the doctor says. “Countinue current meds and blah blah blah.” The problem I seem to have is with identity. I had finally conquered some depression because I started identifying as a sick person. I’m a sick person. I wrote about it in a blog and told all of you fine folks because I’ve been sick for a year and never explained what was making me sick. And now, after finally accepting it and making a plan to live like a sick person for a long time,

4 mins read