It started with a tweet. And a very long drive to Pennsylvania. Our friendship began on twitter, so why not go a step further and fire up the laminating machine? Whoa. I am getting way ahead of myself here, the thought of laminating tends to do that to me. So let’s go back to that long drive and talk about Mia. Mia and I met close two years ago and have become fast friends. Spoonie-sisters that share the unfortunate bond of migraine but also a love of dogs, shark-week and loose-leaf tea. Mia suffers from terrible migraines. So drastic and overwhelming that I feel likeRead More →

It’s been a while… I really do start a lot of blog posts that way. It’s a shame, because I do have a lot of thoughts percolating around up here, but life always gets in the way. Chronic illness will certainly contribute to that, you may have every intention in the world but plans are as fragile as glass.¬† Pain bears down on the crack and splits the once solid surface into shards, cutting and injuring all those that come into contact. We bleed as we flit from diagnosis to diagnosis. My last post was on the eve of my 40th birthday in March, andRead More →

Profiles in Pain is a periodic guest column on the Tumor Blues Blog that highlights how individuals deal with pain and how it impacts the course of their lives. I first¬†connected with Mia on Twitter of all places. We both had come to find other chronic illness sufferers who could understand the unique circumstances of living a life in pain (and do so in 140 characters or less!) and now, more than a year later, a friendship has blossomed. Mia is kind, funny and an exceptionally talented artist. She has a unique way of capturing what it is to be chronically ill and she’s takenRead More →

Or, “Sorry you’re sick, you’re just not sick enough.” I was having a relatively good day, and by that I mean I made it downstairs to the couch. That all changed when the mail came. It seems I have been denied for disability again. This is my second application and my first appeal. That’s three denials for those keeping score at home.* According to the Social Security Administration I am not sick enough to not have full-time employment. This may prove problematic because, as I mentioned above, my good days lately mean I can make it from my bed to my couch. Perhaps it isRead More →

I suppose I got too comfortable and maybe that compounded the problem. Not physically comfortable because that hasn’t happened in recent memory, but more comfortable with the vastness that begins to envelop you when you tangle with the medical-bureaucratic-beast that is the healthcare system when you have chronic illness(es). I have a cadre of kind, knowledgeable doctors that I rely on and trust to guide me. But sometimes we must go beyond those boundaries, whether for additional comprehensive treatment or for situations that require emergency intervention. So that brings us to yesterday, or last week for sake of a more complete picture. I have beenRead More →