Six years ago my daughter and I became vegans. Even with all the food sensitivities she had at that time because of the chronic illnesses she was suffering from she had thrived on the diet and, as animal lovers, we were both relieved to not eat any animals or animal products anymore and wished that … More Why Not Vegetables Instead of Turkey?
I’m glad to say that my daughter has experienced some progress in her condition this fall so she hasn’t needed my help quite as much as usual. Instead, beginning on September 4th, much of my time was involved with small, striped, non-stop eating machines: Monarch butterfly caterpillars. Years ago I collected milkweed seeds from the … More Once a Caregiver, Always a Caregiver
Yikes. Where has the time gone? Never mind, don’t answer that. I know exactly where all my hours have gone: preparing for work, work, homework, taking care of my daughter, and trying to fix myself, besides all of the usual daily chores. To explain my situation, let’s rewind to the late spring of 2017. I … More Frustrated
I know I haven’t written in a long time, and there’s a reason for that which I will explain in my next post. In the meantime, this is a post that I wrote in January of 2017 and now realized that I never published it, so here it is… My last post strayed from the … More Not Allergic to Mold
My daughter has daily IV treatments that require the use of an infusion company, home nurse visits, and an endless amount of supplies for the care of her chest port. She struggles with “brain fog”- which is a form of cognitive impairment that many people with many forms of chronic illness experience. Therefore, I am … More A Call for Advocacy and Empathy
I haven’t posted lately because my father recently died unexpectedly. He and my mother moved to a slightly warmer state nine years ago. My daughter and I helped them move in, but then her condition worsened over the years so making (and affording) the fourteen hour one-way trip was impossible. I’ve focused many of my … More Chronic Illness, Toxic Mold, and Unexpected Death
“Women’s health became synonymous with reproduction: breasts, ovaries, uterus, pregnancy. It’s this term we now refer to as “bikini medicine.” And this stayed this way until about the 1980s, when this concept was challenged by the medical community and by the public health policymakers when they realized that by excluding women from all medical research … More Why medicine often has dangerous side effects for women
I’ve written before that I started writing my book as an outlet for my frustrations after dealing with doctors’ hurtful attitudes for too many years. On the drive home following yet one more upsetting appointment I remember telling my daughter that we needed to find a doctor who had experienced chronic illness firsthand, because then … More Empathy
It’s difficult to find resources and support when you are young and chronically ill. There are lots of blogs, if you can find them, but even then, it’s hard to find someone who has the same diagnoses and severity of symptoms, AND a similar life story. The most common story you read in blogs and books … More Young and Chronically Ill
Postural Orthostatic Tachycardia Syndrome (POTS) POTS is a form of dysautonomia. What is Dysautonomia? Read more about dysuatonomia here The disabling symptoms caused by POTS are similar to living with congestive heart failure. Some POTS patients have had symptoms since birth, but most patients were active and healthy until something triggered a sudden onset of POTS. The … More More About Dysautonomia: POTS
Julie Jacobsen Deck 