Monthly Archives: January 2016

I ordered a medical alert bracelet yesterday.

I’ve had a head cold for the last week and that’s been making me think about medical emergencies and the things I need to remember to tell doctors.
That sounds melodramatic, I know, but it’s not. When you’re taking medication that suppresses your immune system you have to be careful about colds.

Colds can turn into chest infections and chest infections can turn into pneumonia far more quickly than anyone would like. And as someone who used to get chest infections at least once a year up until a couple years ago, I want to avoid ever gettAnjoWashHands2ing one again. When my scratchy throat showed up last week I wanted to kick everything on earth. I didn’t though. I just started drinking all the fluids and taking hot baths and blowing my nose every 5 seconds. And washing my hands every 3 seconds.

I’m very serious about clean hands these days.
This was my first cold since starting either methotrexate or Humira. If it had turned into a proper infection it would have stopped me from taking both of these medications until 14 days after my last antibiotic.  At this point that would have meant starting over from scratch. I’m not really interested in doing that right now.
Luckily (knock wood), It looks like I’ve avoided that.

You might find yourself thinking, Carolyn, these drugs sound like more hassle than they’re worth what with the exhaustion and the nausea and the itchy scalp and the dangerous head colds. Is it really worth it?

To which I would say to you, yes. Absolutely.  The exhaustion, nausea and itchy scalp should all fade as my body gets used to this new regime, hopefully within the next 10 weeks or so. In the meantime,  do you know what I did today? I walked a half mile across the park to the bus stop rather than taking one bus 4 measly stops to get to another bus.
This might burnsnot sound like much so let me reframe it.
For the first time in over a year I was able to walk a half mile. I did not have to stop or grit my teeth.  My
feet did not swell to twice their normal size. I just walked across the park. There was still some pain, but it was tolerable, almost negligible, compared to even 8 weeks ago.
That’s amazing. That’s worth having to order a medical alert bracelet and wash my hands like Howard Hughes.
I’m walking a fine line between nervy fear and this weird aggressive optimism lately. Its a strange mental place to inhabit but it’s worth it if I can keep walking across the park.


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Arthritic happenings

So you know I have rheumatoid arthritis,  right? You know I developed it after eating a bad egg sandwich on Boxing Day 2005 in Barcelona, right? I’ve been sort of rediagnosed with Ankylosing Spondylitis now, because a year ago it began to affect my left eye. And you may or may not know that in the last six weeks I started 2 new medications. Methotrexate and Humira.
The methotrexate came first. It’s technically a chemotherapy drug. I take a low dose once a week.  It makes my hair thin and my stomach feel rough and my body weary. It didn’t do much for my pain or inflammation. However it works with the Humira,  which I started last week, and is meant to increase the length of time the Humira works.
I took Humira for the first time last week. I have to inject myself fortnightly.
The day after my first injection was awful. All my bad spots throbbed with pain. But the second day was amazing. My pain was reduced by a third to a half. Then on Friday I took my methotrexate again and it was pretty awful.  My arthritis pain was still much reduced but I spent the weekend battling nausea, exhaustion, and a really itchy scalp. Saturday was a wash. Sunday was half a wash, but by Monday I was mostly okay.
Hopefully when I take my next injection on Tuesday it will be a little easier and I will be able to walk freely and sit on the floor with my kid and start doing yoga again.
There are scary parts too. These drugs suppress my immune system,  because inflammatory conditions like this occur when your body attacks itself so that needs to stop that from happening. Since I live with a small germ factory this is a little scary. But it’s a risk I’ve decided to take because right now that same germ factory has a mom who can’t do very much a lot of the time and that’s not cool.
This is an exciting and scary time. I’m hopeful and anxious in equal parts. But I can walk more easily, and maybe my cute shoes will fit better now that my feet aren’t so swollen all the time.

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