Nine days. That doesn't seem like a very long time, just over a week. But nine days can feel like a month when each day you get out of bed only to wither away a bit more. I see a new gastroenterologist in nine days. Hopefully he will be able to provide some answers or… Continue reading Starving for Answers
Recently, I was diagnosed with lymphedema in my legs and since my last pain flare its been running rampant. Right now, I am going to vent about why I hate it and now hate yet another part of my body. In my case, lymphedema cause my lymphatic system to be unable to properly filter lymph… Continue reading Lymphedema Can Suck It!
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, because it is National Coming Out Day I decided to finally watch the movie Love, Simon. I'll be honest with you, I had to pause the movie 3/4 of the way through. From the scene where Simon was outed on, I could not stop crying. I was sobbing. Now I know that Simon was… Continue reading Love, Me
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