Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.


Monday, September 24, 2012

Here's a great video from the Transverse Myelitis Association by Dr. Julius Birnbaum, an immunologist who specializes in both rheumatalogical and neurological diseases. This video is primarily about the various manifestations of CNS lupus. Dr. Birnbaum discusses diagnosis and treatment of central nervous system lupus.



Sunday, September 23, 2012

Friday, September 21, 2012

No is a Complete Sentence

I was such a yes kind of person before I got really sick!!!

Yes, I'll cook and clean and work and raise my kid, and entertain the masses and pluck my eyebrows, and play lay counselor to people not interested in changing. Yes, to over booked days and exhausting schedules, and yes! to every request, yes to every phone call and chopping food and cooking and folding laundry! Yes! I was super wife, even though my joints ached too much to have sex I still had obligatory sex with an emotionally shut down spouse who was incapable of emotionally supporting me.





And YES! I could plant a garden and pull weeds and write and run a business. Yes, I squeezed doctors and labs and other medical tests and YES! I made an extra 10 minutes in my day just to run to the pharmacy and then dashing off to pick my kid up from school and get home a cook dinner for an unappreciative spouse. Yes! I drove like a mad woman trying to keep ahead of my perfectly arranged schedule! Did I mention what type of a crabby bitchy chick I was and how that affected my loved ones?!

YES! To all of the emotionally unintelligent people in my life who I allowed to consume my energy and time who I allowed to suck me dry, who were incapable of reciprocating an ounce of emotional support or acknowledgement of me bumbling through life trying to get away from my disease. YES! I wasn't living I was surviving. but the people pleasing YES! was from where the center of my exhausting and shallow reality came. Self dishonesty run riot. 

I do not know how long I will be here on Earth. My time today is very valuable and who I chose to share it with is extremely valuable too. I've learned that saying 'no' is a healthy thing for me. I know that my quality of life begins between my ears, so how then are my actions reflecting that or not reflecting that. Of course there are days when I cannot accomplish much of anything other than sleep. But when I do have a good day, I've learned to use my good days wisely and for good use. 

I've learned to say 'NO.'

Ha! My kid helps me around the house today and the house isn't clean like it used to be, and the husband and the fair weathered friends are long gone, and I don't have a business to run anymore, and unfortunately I've neglected what smallish garden I attempted this summer, we eat lots of left-overs and I screen many phone calls. My 12 year old daughter and I talk about art and writing and we laugh and tell jokes, care for our pets and some days I'm in my PJ's all day, but it's okay because I'm with my daughter. I'm pretty comfortable in my skin today in spite of my circumstances. 

My life is more peaceful and meaningful today because being ill has forced me to become very mindful with maintaining my quality life.

Are you an exhausted yes person? If so, is it bothering you enough to do something about it? Do you value your time here on Earth? If not, then what steps can you take to bring meaning back into your days and nights?