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In: Invisible Illness/Disability, Uncategorized

Okay, that title may be a little dramatic but, let me tell you, as a person that has always repeated the mantra: “failure to plan is planning to fail.” I like organization, I’ve always been a joiner, and, I like to control my own schedule. So, the learning curve on chronic illness has been brutal. Now, don’t get me wrong, with chronic illness you do a lot of planning, but it is mostly contingency planning (what to do when something goes wrong, i.e. your body does not cooperate, the venue is not accessible) rather than being able to plan out your day to day schedule,Read More →

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In: Uncategorized

Happy #LaborDay to all my friends that labor & to all that work tirelessly every day to make lives better for the American worker! #unionYes #unionsmatter #Unions *and, on a side note, I have a few blog pieces in the hopper and hope to back to it soon. Such is #chroniclife #spoonieproblems  Read More →

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In: Diagnosis, Uncategorized

I know it’s been a while since I’ve written, lots of stuff going on that’s hampered my ability to post, so I’m writing a quick check-in to say hello. The last month has been full of medication changes and weaning, new doctors, new injuries and diagnoses, and, a looooong heat-wave (that we are still in the midst of) has made life challenging, to say the least I’m hoping to have a new update soon, and you can always find me on Twitter here.Read More →

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In: Chronic Illness, Guest Blogger, Invisible Illness/Disability, Profiles in Pain, Spoonie, Uncategorized

Profiles in Pain is a periodic guest column on the Tumor Blues Blog that highlights how individuals deal with pain and how it impacts the course of their lives. I first connected with Mia on Twitter of all places. We both had come to find other chronic illness sufferers who could understand the unique circumstances of living a life in pain (and do so in 140 characters or less!) and now, more than a year later, a friendship has blossomed. Mia is kind, funny and an exceptionally talented artist. She has a unique way of capturing what it is to be chronically ill and she’s takenRead More →

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In: Cushing's, Diagnosis, Invisible Illness/Disability, Spoonie, Uncategorized

Or, “Sorry you’re sick, you’re just not sick enough.” I was having a relatively good day, and by that I mean I made it downstairs to the couch. That all changed when the mail came. It seems I have been denied for disability again. This is my second application and my first appeal. That’s three denials for those keeping score at home.* According to the Social Security Administration I am not sick enough to not have full-time employment. This may prove problematic because, as I mentioned above, my good days lately mean I can make it from my bed to my couch. Perhaps it isRead More →

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In: Chronic Illness, Diagnosis, Spoonie, Uncategorized

So I managed to tweak my hip at the beginning of the week. Good thing I have my final pain clinic appointment tomorrow (right after the doctors conference on me, Dr. House style) where they will come up with my multi-disciplinary treatment plan. Aside from feeling lots of pain (not to mention very old), I can only lay in one position–flat on my back–and haven’t slept much in the past 3 days. Needless to day, the combo of not moving and minimal sleep have limited my ability to be very productive. So, while I have a few blog updates & essays percolating, I thought I’dRead More →

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In: Uncategorized

You guys, my birthday present is finished, and it is amazing! First some quick backstory about my hobbies: I have always enjoyed taking two existing words, combining them and creating a new and exciting word (i.e. giant +enormous=ginormous). Hence the title of my blog post. Since I have been chronically ill, I have started crafting. Just a little, here and there, when I am feeling up to doing more than my usual Netflix marathons. It’s fun and I’ve made some pretty cute things for fellow spoonies and friends. I love to organize. This impulse has lain mostly dormant while I’ve been stuck in bed. Anyway, back toRead More →

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In: Uncategorized

Yesterday was my birthday. Not a big one, but I must admit I am now definitely on the outer edges (the very outer edges) of my late thirties. I had a lovely low-key day, two deliveries of simply stunning bouquets followed by a lovely seafood dinner and topped off by my family sang to me over the glow of one candle in a lovely little bundt cake that I favor. A nice day, one of the first birthdays in recent memory that was not overtaken by illness and spent in bed in a dark, quiet room. And of course, hearing from so many people fromRead More →

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In: Uncategorized

The night before I cannot sleep. My eyes, slammed shut and scrunched up tight, pop open every quarter of an hour and I continue to curse at the glowing red numbers on the clock and will them to stop marching forward.  But forward they roll, bringing me closer to the unknown.  I have all of my papers in order, but that doesn’t stop me from jumping up to check that they are all in order, their heft only heightening my anxiety because the many pages contains everything that has brought me to this point. It’s simple really. A non-starter for many people. A trip toRead More →