Because I've seen a lot of it lately in my news feed and am getting fed up with all the comments under each video, I am going on a little rant about "Inspo-Porn". Inspiration porn is when disabled people are portrayed as 'inspirational' or 'extraordinary' due solely to the fact that they live life with… Continue reading Being disabled isn’t ‘Brave’, its my reality.
Today is Rare Disease Day. There are over 6,000 diseases and disorders that are considered rare. Meaning in Europe, it affects fewer than 1 in 2,000 people, and in the United States, fewer than 200,000 people are affected. While these diseases and disorders are rare, being affected by one isn't. In fact 1 in 20… Continue reading Rare Disease Day 2019
Early this morning I meet with a new neurologist, one that I have been wanting to see for a while. When he accepted my case and I booked my appoinment I felt like I was going to finally get somewhere. This is because he sees and treats comlpex disorders/cases. He would be able to work… Continue reading The Trifecta
I am forever grateful that I now have a central line. But my stomach still drops when hearing the words 'blood draw'. And while I look calm and collected, I am fending off a full scale panic attack as the nurses try again and again to get an IV started. Now, I have been poked… Continue reading Find Me in the Ashes
So, today I got my 8th? PICC line placed (peripherally inserted central catheter). They had to make a second incision because it wouldn't thread in the first spot. Basically they told me my veins narrow in certain places they shouldn't and that overall they are tiny baby veins. My luck. They tried threading the guide… Continue reading Percy the PICC Line
I feel like a chicken with it's head cut off! I have been in and out of the hospital, the emergency room, and urgent care these past few months and it all comes back to the fact that I'm not eating. I eat, I get cramping. I eat, I get nauseous. I eat, I throw… Continue reading Running Around in Circles
Living with chronic illness suck butts. There I said it. It's hard, hurts, and is generally hell. In this post I will describe some losses and thing spoonies will tend to grieve as a way for friends and family to get some insight into what we have to experience in our journey. And for us… Continue reading The Major Losses Of Living With Chronic Illness