RA goes to Hollywood…

I was watching the NBC show “New Amsterdam” last night.  It’s not the greatest show, but it is entertaining enough.  The show is based on the novel “Twelve Patients: Life and Death at Bellevue Hospital” by Eric Manheimer.  It follows the doctor in charge of the hospital who is “aiming to reform the neglected facility by […]

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One more thing…

I’ve documented my rough summer.  The last episode has been stomach bug or food poisoning.  Honestly, I wasn’t sure which thing was making my stomach violently revolt.  I began vomiting on a Friday night.  By Monday, I felt fine again.  Was at an appointment on Thursday and began to feel the familiar pang of cramps. […]

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Dipping my toes in again…

I haven’t blogged in a while.  It’s been part writer’s block and part being overwhelmed by life lately.  I’ve had a lousy summer, in which so much stuff has gone wrong, that it is almost ridiculous at this point.  These are the events that I have been dealing with for the past 2 months. -I […]

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I have what???

****I’m updating the story: I started with symptoms on a Tuesday.  Wednesday spiked a fever.  By Saturday, my fever was 102 and I broke down to see a doctor.  I woke up early Sunday morning to take care of Georgia’s insulin and meds.  Ate some toast and went back to bed to rest.  Woke up […]

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Inflammation motivation…

I recently read an article called:  “Chronic inflammation removes motivation by reducing dopamine in the brain.”  Reading the article was one of those “OMG this is me!!!” moments.  For the past few years, I just could not figure out where my motivation went.  Granted, I’m exhausted and in pain….but I have ZERO motivation for things […]

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With a hope and a flare….

This past week, I’ve been dealing with one of the worst flare ups of my disease in years.  I say the word “disease” because honestly, no one seems to know for sure what I have.  Sometimes I’m told I have rheumatoid arthritis.  Other times, I’m told I have psoriatic arthritis or spondyloarthopathy.  All I know….is […]

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Engage me…

Last week, I had the opportunity to participate in a patient panel at the “Virtual Clinical Trials In Drug Development Conference”, in Philadelphia.       I thought I was a good candidate to participate because in addition to being a patient,  I participated in IFAA‘s “A Community Team” (ACT) as a patient leader running […]

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Sorry for smiling….

Recently, social media has been buzzing with the warning that the government will soon be using social media tracking to crack down on disability fraud.  I wouldn’t say this is surprising.  People have been spying on the disabled for years.  Growing up, I always heard how people “faked disability” to milk the system.  My family […]

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Justify yourself…

The symptoms… The past few months I have been really down.  Emotionally, financially, and physically.  My dog’s medical bills are weighing on me.  I feel constant stress over it.  I picked up another job so now I have three 10-12 hour work days to pay for her care.  I’m exhausted.  I justified that exhaustion to […]

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Who knows best…

Insurance is a blessing and a curse in my life.  I’m grateful to have coverage, but so frustrated a the antiquated system of step therapy that they industry still holds valid. I’ve written before about suffering for 7 years before finding a biologic drug that made me feel somewhat human again.  Why?  Because I had […]

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