Last week, I had the wonderful opportunity to have hand surgery, in attempts to rebuild one of the fingers I broke from my January running fall. I've mentioned it briefly on here in the past, but I have a small neuro condition that, controlled with daily meds, rarely bothers me, so I don't really think about it much.
While caregiving from far away is becoming far more common, and certainly becoming more possible with advances in technology, there are still some components that people need to understand when taking on the responsibility that comes with caregiver duties.
This 15 year old (and I've known her since she was six) opens up about what it's like to be a patient. I am most impressed that she recognizes that she wants to be engaged and wants to participate in her care, but feels like the majority of her clinical team doesnt respect her needs. This takes guts!
My 15 year old daughter Morgan has been fighting a battle against a life-threatning autoimmune disease for over 3 years now. This year has brought quite a few challenges, including symptoms that have been difficult to get under control, side effects like meningitis from treatment, and the other typical struggles that come with managing a complex, systemic disease.