April In The Burbs

Dot using her Bob Books word cards to spell her name. Living with a chronic illness or rare disease can be challenging and can often feel like a burden. Dot personally tells me that she doesn't like that she has to take growth hormone shots six days a week, and her brother doesn't. We have lots of talks about how everyone has their own thigs they have to deal with, and this is her thing. I can be as supportive as possible, but this is part of her life and will be so it's important to accept and understand that. It can be easy to get caught up in the negative aspects of the condition and to let it consume your life. However, it is important to remember that it is still possible to live a full and meaningful life, despite the challenges that may come with a chronic illness or rare disease. Here are some tips for living life to the fullest while dealing with a chronic illness or rare disease: Set goals and work towards them: Having goals and working towards them can give you a...

  As a parent or caregiver to someone with a rare disease, it is important to prioritize your own self care. Taking care of yourself can help you better care for your loved one and ensure that you have the energy and resources to meet their needs. Here are the top 10 reasons why self care is important when being a parent or caregiver to someone with a rare disease: 1. To reduce stress: Caring for someone with a rare disease can be stressful, and it is important to find ways to manage that stress. Self care activities, such as exercise, meditation, or hobbies, can help you relax and recharge. 2. To improve your physical health: Taking care of yourself can help you maintain your physical health and well-being. Eating well, getting enough sleep, and exercising regularly can help you stay healthy and better able to care for your loved one. 3. To improve your mental health: Self care can also help improve your mental health by providing an outlet for your emotions and helping you cope w...