The story of Julia
It takes time to clear the overwhelming dense fog pain casts on every waking moment, time to understand where the pain originates, time to learn the language of your own body. Coexisting with pain is indescribable, indefinable. Pain doesn’t have a face or a physical identity, & it won’t produce an image on an X-ray, it doesn’t show up in your blood.
Throughout the last three years I’ve felt abandoned by my body, frustration & abandonment by the healthcare system, waking up with dread, a loss of independence, loss in confidence, rage, uselessness, & loneliness.
I thought I knew what it meant to self advocate, but I am continually humbled by the lack of patient advocacy across the board. The biggest thing you can do for yourself when you have a rare disease is make sure you are being HEARD when you are talking to doctors. Rare Diseases are impossibly hard to diagnose & find treatment for, especially when it’s an invisible illness.
Thoracic Outlet Syndrome is a rare disease. It’s mainly caused by compression in the thoracic outlet (collarbone area) which puts pressure on nerves & blood vessels that radiate out towards your back, arms, hands & neck. I currently have 75% compression of my arteries & my nerves, on both sides, & need major surgery to alleviate the pain.
Because I’m “medically complicated” per my neurosurgeon’s kind summary, I have two types of TOS, arterial & neurogenic, on EACH side of my body. It’s unknown how I became so fortunate as to shoulder this disease (ha, get it?) while 90% of cases are neurogenic, less than 1% of cases are arterial.
That means this year I will have two major surgeries, right side then left side. Dates are TBD as I need to meet with a vascular surgeon before we schedule, but I thought today would be as good as any to share that we’ve at least found the source of numbness, paralysis, tremors, weakness, pain, pain, pain, pain, pain, & we can treat this disease, & I will finally get some autonomy back.
If you’re reading this, thank you for listening.