April In The Burbs

  As a caregiver and advocate for someone with a rare condition or disease, it can be easy to become consumed by the demands of caregiving and advocacy, often at the expense of our own physical and mental health. It is important to find balance in order to maintain our own well-being and be able to continue supporting our loved ones. This was a major lesson that took me a long time to learn. I can't possibly be all of the things to all of the people, and still keep my own health and sanity intact. One way to find balance is to make self-care a priority. This may involve setting aside time for activities that nourish our bodies and minds, such as exercising, practicing mindfulness, or engaging in hobbies. It can also involve seeking support from friends, family, or healthcare professionals when needed. It is important to remember that self-care is not selfish. In fact, taking care of ourselves enables us to better care for others. It is okay to ask for help or to take a break when n...

  I remember the long days that Dot and I spent in the NICU together. Her fighting every moment for her life and to live, and me being there by her side every step of the way doing whatever the next best thing for her medical journey was. Dealing with a rare disease can be a isolating and overwhelming experience. It's not uncommon for patients and their loved ones to feel like they are the only ones facing the challenges that come with a rare disease. However, seeking out a community of others who are also affected by the same condition can provide much-needed support, resources, and a sense of belonging. One of the benefits of being part of a community is having access to a wealth of knowledge and experience. Many rare diseases are not well understood, and it can be difficult to find reliable information about treatment options and managing the condition. By joining a community of others with the same rare disease, you can learn from those who have been living with the condition f...