As one might expect, navigating life with an invisible illness is one challenge followed by another. Beat one. Greet one. Every. Day. Nothing prepares you for the constant fatigue, pain and mystery symptoms du jour – or the endless questions regarding medications and treatments (and let’s not even get started on insurance issues – holy mother of all things bass-ackwards!). You would think that it helps being a nurse – that I would understand more, making it easier for doctors to explain health matters to me. To an…

sick

Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow treatment protocols? Take better care of themselves? Especially now that payment for my services may be negatively affected by bad outcomes and poor patient satisfaction?

Zebra Retreat. No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And it is not a Starbucks Frappuccino flavor (although I would imagine it with hints of banana and coconut). Zebra Retreat occurs when a rare diagnosis, or zebra, figures prominently, but the physician retreats for various reasons – perceived inertia in the system, barriers to obtaining special or costly tests, self-consciousness, or even under-confidence about entertaining a remote and unusual diagnosis (Source:…

Susannah Cahalan, a journalist for the New York Post, was afflicted with a very rare autoimmune disease called anti-NMDA-receptor autoimmune encephalitis. Where my type of autoimmune disease affects the nerve roots and autonomic nerves, this type of autoimmune disease affects the brain. Susannah ended up writing a novel documenting her experience called “Brain on Fire, My Month of Madness”. She writes on a few statistics that I thought were shocking:

Recieving disability payments is more difficult than one might think. To catch you up, I recieved Short Term Disability payments through my employer over the summer. After an initial denial of my claim, I appealed the decision and eventually was approved based on a suspected diagnosis (and the pulling of strings of top executives in the company). With Long Term Disability, I have not been so lucky. My initial claim was denied because they did not see sufficient evidence in my medical record to prove that I am,…

Last month, my doctor told me, “Western medicine has failed you.” But, I don’t buy it. I can’t believe that in this day and age, western medicine failed me. It is not over yet. I’ve been to many specialists over the past six months. Each of which may have a piece of the puzzle, but none are willing to commit. Each one shakes my hand, shakes his head, and says, “I’m sorry I can’t help”. Off to another specialist. I never knew what a struggle it would be…

Well, it has been about six weeks since my trip to the Mayo Clinic for answers. In my previous posts, I let you in on what the Mayo Clinic had come up with. That being said, I needed to get off most of the medications I was put on orginially and add a “miracle medication” that should help the pain. I use quotations to highlight the fact that there is no miracle medication. In fact, it has not even touched my pain. And I’ve grown more sick. About…

This morning I had an appointment with the Rheumatology department. I saw a resident who seemed to think quite highly of himself as he introduced himself: “I’m a SENIOR resident…” The way he asked leading questions proved my theory. At the end of his questioning period, he said there was no correlation with my positive ANA and any connective tissue disease. I breathed a sigh of relief. I don’t have lupus. The attending came in and followed up. He decided to test me for a couple of other…

I had a rough day today. Excuse the short post. EMG in the morning–where they basically stick needles in your muscles. They must have hit the spot as I have been in awful pain and spasms ever since. The doctor said everything looked normal. No nerve damage. Next, I had an appointment with an anesthesiologist to help with the pain. She did a nerve block to the nerve roots in the area where my pain is–more needles in the back. More pain despite the local anesthetic. The block…