You guys, my birthday present is finished, and it is amazing! First some quick backstory about my hobbies: I have always enjoyed taking two existing words, combining them and creating a new and exciting word (i.e. giant +enormous=ginormous). Hence the title of my blog post. Since I have been chronically ill, I have started crafting. Just a little, here and there, when I am feeling up to doing more than my usual Netflix marathons. It’s fun and I’ve made some pretty cute things for fellow spoonies and friends. I love to organize. This impulse has lain mostly dormant while I’ve been stuck in bed. Anyway, back toRead More →

Yesterday was my birthday. Not a big one, but I must admit I am now definitely on the outer edges (the very outer edges) of my late thirties. I had a lovely low-key day, two deliveries of simply stunning bouquets followed by a lovely seafood dinner and topped off by my family sang to me over the glow of one candle in a lovely little bundt cake that I favor. A nice day, one of the first birthdays in recent memory that was not overtaken by illness and spent in bed in a dark, quiet room. And of course, hearing from so many people fromRead More →

For Part I Click here: EMERGENCY ROOM REGRETS PART II For everything that was degrading, dehumanizing and downright awful with my visit to the Emergency Room this past Monday, it did have one unintended positive: providing a stark contrast to yesterday’s new patient intake at the Stanford Pain Management Center. Part of me wanted skip the appointment altogether. It’s a bit of a trek into the heart of Silicon Valley where the clinic is located, and I was doubtful that it was worth the expenditure of spoons it would take to bring a whole new group of physicians up to speed on my case. ButRead More →

The night before I cannot sleep. My eyes, slammed shut and scrunched up tight, pop open every quarter of an hour and I continue to curse at the glowing red numbers on the clock and will them to stop marching forward.  But forward they roll, bringing me closer to the unknown.  I have all of my papers in order, but that doesn’t stop me from jumping up to check that they are all in order, their heft only heightening my anxiety because the many pages contains everything that has brought me to this point. It’s simple really. A non-starter for many people. A trip toRead 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 →

You know that saying, “an apple a day keeps the doctor away”? We’ll I could eat a bushel of apples daily and I would still need close to a dozen doctors to help me sort out the messy piles that makes up my health. There is the endocrinologist, the neurologist, the rheumatologist, the gastroenterologist, and on and on (and on some more). I’m averaging about two a week for the foreseeable future (more if you factor in the emergency appointments to urgent care). Last week I had one of the bad doctors visits. If your are chronically ill you’ll likely have your own trove ofRead More →

Yesterday, people from all over the United States (and even in countries across the world) got together to march for equality. Marchers were there for many different reasons, equal rights, inclusion, protecting and increasing civil liberties and more. I am no stranger to marches, having walked different progressive causes during the last few decades. But circumstances have changed and I am no longer able to physically pound my feet on the concrete and chant along with the masses to fight for our collective rights. But the activist in me will not be silenced. So I will fight.  For equality. For inclusion. For saving health care soRead More →

An emotional support dog is an animal that provides a therapeutic benefit to its owner through companionship. Today I remembered that I have a puppy.  As a chronically ill person, my dog is an integral part of my life. I rely on her company and presence. The softness of her fur and the reassuring heft of her warm body leaning against me as I spend most of my day in bed. In the fleeting moments when I sit outside, she cuddles up and watches the signs nature occurring all around us with a youthful curiosity and a sense of wonder. She is love and supportRead More →

I’ve been sick for a while now, but I still find it amazing how quickly a pain spike (or flare) can completely knock my life out of whack.  It’s a life pared down from my past, filled with doctors and medications instead of policy, advocacy and action. I have grown accustomed to the rhythms of this chronically ill life, learned how pare back to the absolutely necessary while dealing with the daily, constant presence of pain and the symptoms of sickness. And perhaps because of pain’s sizable role in my daily life, I feel surprised when my body finds away to increase the pain andRead More →

So, after many good years with my previous blog/website provider, I have decided to plunge headfirst into the world of WordPress. The fancy new blogging area will have the same type of content and I will slowly be reposting the blogs from the beginning of 2017 until the changeover. All blogs from 2016 on backward will be housed in a separate area which is currently under construction. Thanks for your continued support! JennRead More →