Every few weeks, an article will pop up declaring scientific breakthroughs in the medical community. They will herald new and promising treatments for the afflicted. There will be vague explanations of technology driven research and claims that THIS! THIS ONE! is the beginning of the end of suffering for thousands, millions of people around the … Continue reading Don’t get left behind
Tag: patient advocate
Can I eat this?
No fiber. No fat. My diet is pretty much the antithesis of commonly practiced healthy guidelines. Gastroparesis is an up and down condition. It flares and wanes depending on many things, some of which you have no control over. Pain, nausea, and vomiting are often relentless. Since gastroparesis is basically a paralyzed stomach, learning major … Continue reading Can I eat this?
Bringer of the medical zen
I have a family member who needs fairly intensive surgery. They are healthy besides the one impediment of a feisty heart that just wont stay out of afib. They have had procedures before. Ablations and cauterizations done through veins that worked for short amounts of time. At this point, the next surgery has to happen … Continue reading Bringer of the medical zen
I’m just a girl – Diagnosing part 6 (Chronic Idiopathic Uticaria)
The term “hives” immediately brings to mind a body full of welts. I was always under the impression that they were caused by two things, anxiety or skin allergies. Growing up, I never suffered from hives or frequent rashes. My main allergy was/is dust. It causes my nose to run, eyes to itch, and a … Continue reading I’m just a girl – Diagnosing part 6 (Chronic Idiopathic Uticaria)
Invisible proof
What you didn’t know, was that you would spend the rest of your life trying to convince people that you are broken. Even as you wrestle with the daily mindfuck that is surviving with invisible conditions, people need you to prove your pain and symptoms. Your word isn’t enough. Descriptions of any detail will never … Continue reading Invisible proof
So many sorrys
We’ve been apologizing for as long as I can remember. Saying sorry to anyone who happens to see you on a hard day. Cowering to the people who consider our existence an inconvenience. Trying to soothe the awkwardness of those around us when we are flaring. From the first time I was brought into the … Continue reading So many sorrys
Failed fluffy friend
I’m an animal person. I’ve been around pets and wild animals for most of my life. I know how to care for and interact with them. It’s all very natural for me. That being said, I haven’t had my own critter for a very long time. With a busy life, moving around, and travelling frequently, … Continue reading Failed fluffy friend
Skimming pills
Most chronic illness and pain sufferers take medications. We require synthetic and natural interventions to live our lives. Certain meds make things significantly better, others keep us at maintenance levels, and some have the very heavy burden of keeping us alive. Because of this dependency, our relationships with medical providers and pharmacists are of the … Continue reading Skimming pills
Welcome to the bumpiest road
I’m not one of the lifers. My chronic conditions took over less than a decade ago. While I had experienced some symptoms earlier, my overwhelming and life-altering issues only developed in my late twenties. Of course, any amount of time with severe pain and symptoms feels like an eternity. Looking back to days of physical … Continue reading Welcome to the bumpiest road
It’s only your life in their hands
I get one of my medications from another country. After years of trying every possible combination of drugs to ease my stomach symptoms and increase my appetite, my gastroenterologist told me about one of the most effective medications for my condition. However, it was/is banned in the United States. Desperate and willing to incur the … Continue reading It’s only your life in their hands
Always Bent Sometimes Broken 