My home state of Maine has not been exempted from the recent heat wave that has encompassed most of the United States. The heat is difficult for many, but I have a neuromuscular disease that is exacerbated by the heat, so I must be particularly careful to stay cool and hydrated. Each morning, I do two things without fail. First, I open all the windows at 5 a.m. to fill my rental with cool air before the outside heat necessitates closing them again and turning on the air conditioning. Second, I mix a hydration packet into my water. I can’t help but think of how similar this second routine is to my immune globulin (IG) treatment regimen. [More]

At 46 years old, I found myself officially disabled due to multiple autoimmune diseases and a soon-to-be diagnosed rare disease. My 40s certainly hadn’t turned out the way I had hoped. I was spending all my time on specialist visits, disability applications, diagnostic procedures and treatment protocols. None of this was what I had envisioned when starting my family in my early 20s. [More]

Have you ever heard the phrase “two steps forward, one step back”? It is intended to mean things are not going well. The phrase is an excellent way to express how you feel when your efforts do not seem to be getting you where you want to go quickly. For me, the phrase is a great way to describe life with a chronic illness. I have been fortunate enough to complete an undergraduate degree and an advanced degree, and I am currently working on another. But my educational experience has not gone like other people’s. [More]

As a patient advocate, I get many requests for help. Some requests are not directly related to illness, but rather to quality-of-life issues. For example, a few months ago, I received a request from the spouse and caregiver of a person who had recently started to receive immune globulin (IG) infusions. [More]

Recently, I taped a podcast with the executive vice president of sales for Nufactor, a specialty infusion company on the growing trend of immune globulin therapy, also referred to as IG Infusions in the Home Setting. The podcast focused on what information both patients and providers need to know before transitioning to the home. [More]

Years ago, I read a book titled Love in the Time of Cholera about two young lovers who communicated through letters during a pandemic. The story is about much more than writing love letters. It is about life, loss, maturity and second chances. With the third Valentine's Day during a pandemic approaching, the book made me think about how people communicated in the past and how fortunate we are today. [More]

My great-grandmother lived with me when I was growing up. She passed away my senior year of high school at the ripe old age of 104. Many of my friends thought it was a burden to have her at home. I never did! In fact, I learned a lot about life from her. Over the years, I have benefited a lot from what she taught me such as how to can fruit and vegetables, the importance of exercise and to have faith. But I never realized the most important thing she taught me was to be happy. [More]

Before I sit down to write a blog, I spend a few days thinking about the topic and how readers will relate to it. This month, I was going to write about how this Thanksgiving was different than last year's when we were facing a long winter of lockdown and how thankful I was the end of the pandemic was in sight. Then I read the news about the latest mutation of COVID-19: Omicron! [More]