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RE: Sometimes you just need to vent!
It's the beauty of life with autoimmune diseases. You drink drugs every day, you struggle to endure every day. I think my fatigue and sleep are the worst. I just have enough to drive and bring children to school, I'm tired and can not do anything else. It's no easy life, I know how you feel.
Have a nice vacation on a cruise.
I hear ya @sylviamiller! It really was the 'otherwise well' comment that pushed me over the edge!!!
If a patient without chronic illness could not get out of bed, drive, get food or brush their teeth the medical profession would be in a panic. Call the social workers, do more blood tests we can't send this one home, their on the brink of disaster.
Even with a critical level blood test, I get a pat on the head and 'otherwise well'. Seriously!!! Clearly I have now upped my prednisone and my level of grumpiness. Probably not the best time to write a sternly worded letter to my endochronoligist or the registrat at the hospital, but I'd really like to.
Hope you get some relief soon, and don't be affraid to advocate for yourself. These doctors are only people, they are falable they make mistakes. Ask questions until you're satisfied with the answers and they have you in a place where you can function with a young family.
I have my GP to fall back on when outside specialists fall down on the job like they did today. Still it's not ideal that I'm 'guessing' what my prednisone dose should be for the next 4 days until I get back and can review the situation with my GP again.
Good luck and stay in touch.