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“There is nothing we can do for you” #bedsidemanner

Why would any physicians office utter these words unless the ultimate outcome was death? I have heard these words more times than I could have ever imagined over the past six years living with chronic rare diseases. Right now, I’m experiencing inflammation of my sternum and rib cage following bilateral rib resection surgery. I’m a chronic pain patient, so I’m used to being uncomfortable. I used to being in pain. So when a physician told me my inflammation pain could be relieved by a round of steroids. If those don’t work, they can inject a steroid into the areas in pain, I was hopeful. I tried the pills for 10 days with no relief. After another 10 days of giving me the run around (we’re still processing the referral), the office assistant at a pain management clinic finally returned my call and said they “couldn’t help me.” I refuse to loose hope and know a doctor will help me. I just can’t fathom telling a patient those words. #Next #TOS #MdDS

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Hiding the scars #TOS #ribresectionsurgery

My scars have always been invisible, but following bilateral rib resection surgery this spring, I wear my scars as a badge of pride. Mainly because I cannot find a swimsuit that I can actually pull on and doesn’t hurt my incisions. #ThoracicOutletSyndrome #bilateralribresection

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Back behind the wheel 😳

I’m three weeks post thoracic outlet decompression surgery, and I met the criteria to drive again!! If you’re in Iowa, duck and cover if you see me coming. 🤣 #TOS #oneribdownonetogo

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1 rib down, 1 to go

Recovering from my first thoracic outlet decompression surgery. My symptoms from MdDS have skyrocketed and I have a long journey to recovery, but I’m home and improving every day. #TOS #MdDS #RareDisorder #journeytorecovery #

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Downward Dog

When you’re trying to get back into your yoga practice and your pet takes downward dog a little too seriously. #yogawithabalancedisorder #MdDS #TOS

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This is 40!!

Chronic pain, dizziness, nausea and numbness will not keep me from making memories and celebrating this milestone. #MdDS #TOS #chonicpain #celebratenotisolate #thisis40

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