Photo of Kelly Goodman

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In: Chronic Illness, Guest Blogger, Profiles in Pain, Spoonie

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 met Kelly Goodman at a black box theater in Los Angeles, but I knew her before we had been introduced. And I was in awe. The woman has so much talent and boy does she make it look effortless. Improv is what started our friendship but over the years we have built a long-lasting bond and I continue to appreciate her warmth, caring and wise counsel. And she always brings the funny. You can check outRead More →

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In: Chronic Illness, Cushing's, Invisible Illness/Disability, Surgeries & Procedures

Suddenly Phobic I have had three brain surgeries, so you would think I would be comfortable with MRIs. And up until a few years ago, you would have been right. Perhaps comfortable is the wrong word, I have always been  a little claustrophobic, but that was easily remedied with some anti-anxiety medication. It has been almost 20 years since my initial diagnoses of Cushing’s Disease, caused by a pituitary tumor located near the base of my brain, and I have had many, many MRIs. In fact, my mother and I have joked about how the cheaper option may have been to buy an MRI machineRead More →

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In: Cushing's, Diagnosis, Invisible Illness/Disability, Spoonie, Uncategorized

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 →

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In: Chronic Illness, Diagnosis, Spoonie, Uncategorized

So I managed to tweak my hip at the beginning of the week. Good thing I have my final pain clinic appointment tomorrow (right after the doctors conference on me, Dr. House style) where they will come up with my multi-disciplinary treatment plan. Aside from feeling lots of pain (not to mention very old), I can only lay in one position–flat on my back–and haven’t slept much in the past 3 days. Needless to day, the combo of not moving and minimal sleep have limited my ability to be very productive. So, while I have a few blog updates & essays percolating, I thought I’dRead More →

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In: Uncategorized

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 →

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In: Uncategorized

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 →

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In: Chronic Illness

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 →

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In: Uncategorized

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 →

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In: Diagnosis, Invisible Illness/Disability

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 →

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In: Uncategorized

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 →