I won't deny this isolation has been hard. Not being able to see my therapist or my psychiatric NP in person for our first meetings has already set me back in the diagnosis and treatment process. They can't see my mannerisms and stims, they can't read my facial expressions or tone, they can't tell when… Continue reading Losing Mobility
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!
I'll admit this winter has been hard on me. From the beginning of the new year I have been in a huge pain flare and depressive episode. My motivation was drained. I was constantly exhausted, taking 2 or more naps a day. For a brief moment I lost hope. Hope that I would graduate. Hope… Continue reading Think Zebra
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
Lets just scratch out January and pretend February is the first month of the year, OK? This year I am trying out a word of the year. My word is PEACE. Peace of mind. Peace of body. Peace of heart. I am using The Mighty's 52 Small Things plan of achieving one small goal or… Continue reading Peace and The New Year
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