sick

In one month, I will have been sick for four years. I never thought something like this would happen to me and it comes with many challenges. I’ve found that in the midst of all the struggles– the IV treatment and the side effects, the pain, the constant doctors appointments and tests, the fatigue, missing out on life events, the thoughts of what my life could have been if I had never gotten sick– the hardest part of being sick is being alone. The real struggle is in…

We reached downtown just as the sun began to set. San Francisco at dusk is a bustling place. Brakes squeaking, fluorescent lights flashing and illuminating windows of bars and restaurants. Rush hour traffic cramps the streets. Street lights begin to light one after the other. You can catch a host of different people walking during this time. A young twenty-something wearing a beanie and a messenger bag, coffee in hand, surely heading to a poetry reading or open mic night. The business savvy woman in heels hustling to…

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?

disability

Well, my first round of IVIG is finished. Initially, I was due for 6 treatments over the course of 3 weeks. Each dose of 1 gram/kg. After getting aseptic meningitis after the first treatment, my infusions were spread out over 6 weeks.

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:

“Radiculopathy: refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.” (Wikipedia)

So I thought I would provide an update on my diagnosis/treatment journey. About a month ago I came to the end of corticosteroid treatment that proved beneficial. I started to show signs of Cushing’s syndrome–moon face, weight gain, etc. (and no, I won’t post a picture). At this point, my cardiologist and I know that I need to begin weaning off the prednisone because the risks are now outweighing the benefits. Unfortunately, the doctor that is now in charge of my care, the researcher at EVMS, is not…

Do you want to know what makes me sick (no pun intended)? The insurance company denied my Long Term Disability claim stating that there was not enough evidence to approve the claim. Therefore, I will effectively be terminated from my job this week–and lose my health insurance. The irony in the situation is that if I were to go apply for health insurance to cover me during my unemployment, they undoubtedly would deny me coverage based on the fact that there is evidence that I have a preexisting…