MRA, CRP, AVN, CBC, IV, PT, CVT and so forth

Coping and advocating through chronic illness

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Managing a chronic illness and advocating for yourself through the process can be overwhelming. I have found that having an amazing Rheumatologist and Primary Care Doctor are crucial to successfully navigating the medical mumbo-jumbo. I have been blessed to be treated by the same rheumatologist since I was diagnosed. She practices at a large teaching hospital and has a great network of colleagues at her local hospital and across the country. She has referred me to most of my other specialists, which in turn makes my medical team stellar.

Overtime, the medical abbreviations, tests, procedures, reports, scheduling, etc. become less intimidating and more comfortable. I have a favorite spot to park in the parking garage at the hospital, I like to sit in a certain seat in the rheumatology waiting room, I prefer a specific medical assistant to do my vitals, I am even picky about who does my annual MRA (Magnetic Resonance Angiogram)/heart scan. I am more apt to speak up if the medical gown is cutting into my arm at the start of a scan, rather than being annoyed during the scan and ending up with a bruise. I ask questions and like to be included in making decisions about my medical care. This has been a process and I have hopefully become bolder over time.

I am also blessed to have an amazing advocate in my spouse. I go through periods of time where I am fiercely independent with my care. However, when I am overwhelmed or exhausted, he steps in and takes up the mantle. He has listened to me speak jibberish coming out of anesthesia, he has washed my hair, sorted and filled my medication, driven me to countless appointments, communicated with doctors, picked up prescriptions and sat in innumerable medical waiting rooms. When we were married just out of college neither of us could have anticipated I would be diagnosed with a rare autoimmune disease. He has stepped up and stepped into my care, and I am grateful.

I have also learned that if there is a very small chance of a side effect, or something that doesn't regularly occur with other patients - it will likely happen to me. I seem to tend toward the odd, unusual and unique when it comes to medical things. For instance, I have experienced multiple fractures, yet my bone scan results are normal. Typically, someone on long term steroid therapy would have osteopenia or osteoporosis. Nevertheless, I am on a bone density drug to prevent future fractures.

I continue to learn and grow as I continue to live with Takayasu's Arteritis.