Category Archives: Chronic Illness

The Husband and The Head

Days like today make Dan’s job ever so slightly less exciting. It’s Saturday, he’s at work. Yesterday was supposed to be an off Friday (every other Friday they get off, they work 9 hours Monday-Thursday then 8 hours every other Friday), and he worked yesterday too. They’re trying to launch a rocket. Thursday was the first attempt, got scrubbed (cancelled for the day) due to weather. Yesterday, scrubbed again due to weather. Today, same percentage chance of getting scrubbed again due to weather. Tomorrow, thankfully, he won’t have to work (his coworkers are covering his support position because we had plans), but they’ll try again, and it’s the same percentage. If necessary, they’ll push it to Monday, which has a much better percentage of launching. At least they switched to a two week pay period, so he can flex his hours, which will make next week very short.

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Slight Relief

Thankfully, the KILLER headache is gone. I’ve been doing homework on the computer all day though, so I do have a headache again. Most of my muscles no longer feel like I’ve been hit by a truck, but if I move wrong I can tell they are really tight because suddenly they pull very painfully. Still no energy for a shower or anything like that. I really need to shower today though, especially if I am going to take Dan out for his birthday! Ugh. I cannot wait to get my homework wrapped up for the semester.

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Can’t you tell that I’m super excited about my homework?

Dan is going to call his Employee Assistance Program thing to find me a neurologist. My increase in the severity and frequency of my headaches was concerning us, and this last episode definitely scared us both. Here’s hoping I can find answers sometime soon.

My Neck Has Checked Out

Last night, as I was laying in bed doing my normal things that relax me (playing my silly games on my phone, Instagram, Pinterest, etc), I shifted and realized that all of my necks muscles were extremely sore. It was really odd. So I stretched gently, and ow!!! Yup, something is wrong.

I take a muscle relaxant every night to help me sleep. I figured that sleeping and the muscle relaxant would get them to relax. Finding a comfortable sleeping position was a little difficult, but it wasn’t too bad.

Closing In

Had I slept like this, I’d at least know why my neck hurts!

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New-ish Diagnoses

These diagnoses aren’t new, actually, but I just found out about them. These two new-ish diagnoses are joint hypermobility syndrome (I will often shorten it to JHS) and inappropriate sinus tachycardia (IST).

Joint hypermobility syndrome, which I wrote a little about in the Writing 101 assignment Why Do I Write?. I have always been very flexible, but for some reason having a name makes things make more sense. Dr Spencer thinks it is possible I might have Ehler-Danlos, but the genetic testing is expensive and it wouldn’t change any of my treatments anyway. JHS is a congenital condition that just makes all of my joints extra loose.

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It’s Giving Tuesday

I hadn’t even heard of Giving Tuesday until today… apparently, I’ve been living under a rock? I think I just have difficulty keeping track of which “named” days get added onto this specific part of the season…

Anyway, Giving Tuesday makes me feel much better about the world than the others. One invisible illness blogger I read regularly, Let’s Feel Better by Ilana, also works for the Global Genes Project. She wrote about the work they do and some of the non-profits they work with!

Check out Ilana’s Giving Tuesday post!

Featured in Ilana’s post: Dysautonomia International, Jeffery Modell Foundation, EB Research Partner (EB is the “butterfly” condition)

Defining Disabled from Indisposed and Undiagnosed

Defining Disabled – Indisposed and Undiagnosed

I’m just going to leave this here. I’ve been thinking along the same lines, and she articulated these thoughts perfectly!

 

Food Holidays and GI Issues

Oh Thanksgiving… You do not give me great hope for Christmas! My stomach hates me now (not quite as much as I expected, but more than too much). I eat the same kind of meal at Christmas (turkey, stuffing, cranberry sauce, potatoes, etc), so this doesn’t bode well. But at least I won’t go on a fast food binge before Christmas (like on a road trip).

First Road Trip With POTS – Short Thoughts

This has been my first road trip since my POTS diagnosis, and it has been a learning experience. I’ll write more about it later, but here are some quick points.

  • You will be too hot and too cold… Sometimes at the same time.
  • You are going to get crazy dizzy because road trips are dehydrating
  • Clothing is obnoxious
  • Fast food and soda are simultaneously awesome and evil
  • Bladders are tiny
  • There is no such thing as being over prepared

Your Brain on Pain

I get Real Simple magazine. It felt weird switching from Cosmo to Real Simple, but I suddenly felt like the magazine was being written more towards me, so it was obviously the right time to switch. It’s odd what things make us realize we’re growing up. Anyway, I don’t tend to write about what I read because the things I utilize from the magazine tend to be the organizing and cleaning tips (and there are SO MANY of those online). I do occasionally read stories that tug at my heart, but since I’ve started this blog I hadn’t read a story that felt like it was written specifically for me.

real simple august cover

Well, that all changed in the August 2015 issue (I just read it recently because I fell behind, haha). In the August issue, there is an article simply titled “Pain.” I figured it would probably focus on “normal” pain, for “normal” people… which is kind of true. However, it did actually discuss chronic pain. And there were some disturbing pieces of research mentioned in the article.

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