Today, BloggersUnite is hosting an online event entitled People First: Empowering People With Disabilities .
I’ve been having unusually prominent symptoms from my lupus. I always anticipate a little trouble once the sunshine finally arrives here in Oregon, but these are symptoms that I haven’t had or remember having for quite a few years. Naturally, my first concern is that my kidneys are in trouble. The rates of kidney involvement for us with lupus averages about 50%. I’m one of the lucky ones where it went straight to my kidneys to begin with, and I do mean lucky. Since there isn’t much to do for my lupus via medication, having the back up of dialysis and decades of kidney research gives me a sense of assurance for a ‘Plan B’. Of course, it is a moot point since it doesn’t do me much good without medical insurance or a nice nest egg to pay for it.
So, my imagination has been going wild with concerns of clotting and strokes, MS, CNS involved lupus, and so on. It’s amazing how much panic I can stir up when my body sends me the signal that something is amiss, no matter how truly insignificant. Clearly, I do not appreciate all that I am blessed with health-wise, if I can be derailed this easily. What a baby.
I know some amazing people living with much more challenge, heartache, spirit, grit and courage than I do. I am honored to have these friends encouraging me to take what life throws at me and who always teach me something about my perspectives, judgments and biases, character and life, as a whole. I don’t want to learn how to make more excuses or whine about my supposed bad luck. I want to learn to be strong, and my friends (who I feel deserve to have their abilities mentioned rather than their dis-abilities) have a particularly keen ability to get me off my lazy tail end and try harder. It is these friends I want to honor today and thank them for making my life more interesting, fulfilling and humbling.
I want to quickly mention a few websites that I visit as often as I can, to learn more for my friends, myself and my family.
Disability Studies, Temple University features exceptional writers, topics, information and many more notable blogs or websites to visit. I am not living with a disability, but always leave this resource with something to consider and someone to learn more about.
Lupus has been included under the ADA guidelines of disabling conditions or diseases. However, the protection within the workplace or even within the medical community seeking/maintaining insurance coverage is still pretty vague and inconsistent. If you are in a situation at work where maintaining employment has become a problem due to your chronic health challenges, I highly recommend you check out my friend and chronic illness coach, Rosalind Joffe . She is a wonderful resource for anyone living with a chronic condition who wants to succeed in finding their place in the workforce. I’m currently going through her workbook that compliments her book Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! that I have reviewed here Here are a couple of her blog posts that address disclosing your health, your rights to learn more about and some recommendations.
Insurance benefits and Disclosure
Also, for anyone looking for more information about advocacy for chronic illness disability, here are some additional resources we know for you to check out:
National Resources
US Department of Labor – Office of Disability Employment Policy
Oregon Resources
For Oregon Employers
If you know of other online or Oregon resources, please be sure to leave them in the comments section here. We are always looking for more to add here on the website.
Here’s to emPOWERing all of us~ we all bring something to the table.
