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Tag: spoonie

administrative updates…

administrative updates…

Hi friends, I’d like to tell you that the title for this post is some deep metaphor for the wisdom I’m about to bestow, but it’s actually very literal. I made some updates to this blog, and they were administrative in nature. How boooooooring. Formerly, my blog was hosted by WordPress.com, which allows only minor changes. So, I decided to upgrade and self-host a WordPress.org blog. If you read this through an email, please navigate on over to www.dysautonomiac.com and let…

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chronically ill holiday guide…

chronically ill holiday guide…

This is the third year I have posted this guide for people with chronic illnesses and their loved ones. I wanted to share it again this year, as I have made a few updates. The holidays are a wonderful time of togetherness, but can also be a time of stress and frustration as well. If you’re already dealing with the stress and frustration of a chronic illness, holidays have the potential to be miserable. Although I wouldn’t consider myself to…

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women’s sufferage…

women’s sufferage…

Gentlemen, this is another one of those posts you may want to skip. Although, like my other “female issue” posts, I promise to include some ultra manly photos for the fellas. A few weeks ago I had my “annual” (although since I have no family history of cervical cancer, I get to go every few years) exam. The doctor was running a little late, so I was informed the wait would be a few minutes. I have a permanent request in my…

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well, this is new…

well, this is new…

I’ve had an interesting week. It’s been a week of firsts. If you’ve been following this blog you know I’m in the process of weening off the beta blocker (atenolol) I’m on as part of my long term plan to see if having kids is in my future. I’ll update how that’s going soon, but as you can probably tell from this post, it’s not going well. I came down with a migraine on Tuesday, and I’m not sure why….

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Reblog: POTS and My Morning Routine {Living with POTS Series}

Reblog: POTS and My Morning Routine {Living with POTS Series}

I am honored to have been asked by my blogging friend, Caroline, to contribute a post to her blog! Caroline has been an inspiration to me ever since I started following her blog. Like me, Caroline has postural orthostatic tachycardia syndrome (POTS). Unlike me, Caroline has participated in a couple half marathons!  POTS certainly makes running a challenge, and I admire Caroline for persevering and doing what she loves.  Check out her blog, The Little Things. In my guest post,…

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to sleep, perchance to dream…

to sleep, perchance to dream…

I don’t want to brag, but I’m pretty awesome at sleeping. Pretty much anytime, any place, for any length of time. If there was a country called “sleep”, I’d be the President.  I could rock that job in my  – HAHA – sleep. As you probably know by now, I take a half of a beta blocker pill each day to help with the tachycardia. And, except for the occasional bad day, the beta blocker does a great job of…

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massage without the happy ending…

massage without the happy ending…

As I’ve mentioned previously, I’ve been experiencing more pain than usual in my back and neck. At least part of it is caused by the golf-ball sized knots I have.  My dad kept encouraging me to go get a massage, and I kept making empty promises that I would. It’s not that I don’t like getting massaged. Lying naked on a bed in a dim room with soft music playing while getting warm oil rubbed over me by a perfect…

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something, something darkside…

something, something darkside…

A good friend of mine wrote a blog series for the Spirit of War military blog about suicide in September for suicide awareness month.  As suicide has been an important issue in the military community for decades, her blog series was both relevant and timely.  The blog posts acknowledged the stigma surrounding suicide, then advocated for ending that stigma and opening up the discussion. There is an emotional darkside to illness.  The pain, loneliness, difficulty coping all can lead down…

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the heat is on…

the heat is on…

Holy Heatwave, Batman! We have been having an unprecedented heatwave here in southern California.  Certainly this time of year, temperatures are expected to rise – that’s no surprise. In fact, I don’t even think we have broken any records. The highs have been in the 90’s Fahrenheit (about 32-35 C for my international readers), lows in the 70’s. Having grown up in the desert, I’ve lived through much worse. Even since I’ve lived here, I have seen hotter days. Almost…

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chronic voyage…

chronic voyage…

I love traveling. I mean, I LOVE traveling. Ever since I was 15 and ordered my first Guinness beer from a bar in Ireland (and by “beer”, I mean water, mom and dad), I have been hooked. I traveled to France at 17 for a foreign-exchange program, and lived in the Czech Republic for six weeks when I was 24 for a law school study abroad program. In between, I managed to visit a handful of other countries, and numerous…

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