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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Cry or lie…

The why… I’ve been going through a lot lately.  Physically, financially, and emotionally.  Life has been a roller coaster without a stop button. I keep thinking about my mom’s favorite quote, “this too, shall pass”….and hope for a better tomorrow.  Lately, tomorrow seems to be a lifetime away as things pile up….but looking for the bright […]

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A little bit more…

I may have become cocky and over confident in my ability to tolerate pain.  On an average day, my fingers, elbows, shoulders, hips, lower back, knees, ankles and feet hurt. A lot.   Each day starts out with almost all my joints revolting when I try to stand up in the morning. It eases up […]

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