Wednesday, June 3, 2015

Becoming Your Disease

Normally I am not a big sun person ( well, not since my teens) but for the past few months I have craved the sun...its light, its warmth, its brightness.  I find myself going out on the deck at noon and just sitting for a few minutes to bask.  It is interesting how our bodies change, how our needs change.
I know for now, my body and probably my spirit needs the sun...much like a plant...I feel growth taking place.

Since I stopped IVIG treatments there has been tremendous change in my energy, my feelings and even my emotions.  I had almost forgotten what being Jilda felt like, but I remember now...and I like it.  For all my fighting, and struggling...the disease and treatments were trying to take over my being.
It has been quite some time since I felt free...but that is how I feel these

I still deal with the illness, but the Smart Vest is amazing...that hour every day has been a game changer. Taking a deep breath has never felt so good. My heart is filled with gratitude.

If you are struggling with chronic illness, it is so very important that you do not become your disease.
Trust me, I know how easy it is for a chronic illness to take command of your lose your identity to meds, doctor's visits and bad days.  But for your well being, for your survival, you cannot let the illness consume you.  It is imperative to live your life the best you can, to have normalcy.
Even if you cannot do what you once did, do something, make attempts, embrace a new hobby, make some new friends and NEVER forget to be remember to look for the good every day.

Goodnight, Sweet dreams


  1. I was diagnosed with epilepsy at the age of 17. At that time very little was known about epilepsy and many people considered to be a mental defection. I was advised to limit physical activity and to watch certain foods. I have since learned much about it and know more than some doctors. I am not defined by my condition but I deal with it to the best of my ability.

  2. A timely reminder, thank you. It can be difficult not to become one's disease, but switching my attention to the things I love, like gardening, helps me remember me apart from illness.

  3. So so happy to hear you're feeling so good. Makes me smile!

  4. Yea!!!, good job Jilda. Big hugs.

  5. Everyone needs that bit of sunshine. That vitamin D is good for you in sensible the way you are doing it. I'll sit for a few minutes outside even in the cold Winter if the sun is shining...always feels good! I'm so glad you're feeling better and living your life to it's fullest. Enjoy!