Wednesday, December 17, 2014

Lupus and Grieving

I was diagnosed last week but just got to the business of facing it today.

I'm frustrated.   I thought roller skating and I were just on a temporary emotional hiatus.   Til I stopped being sore all the time.  And felt energetic and hopeful.

But it looks like anything strenuous will cause me more pain.  Ditto for hip hop dancing. 

Today as a result of the steroids my eyelids and under eyes are swollen to the point of pressure if trying to read or focus on something.   Have you seen the size of my bookstack?  I feel those shelves crumbling around me if I can't read them.

It feels like my Job moment but I am nervous to be so presumptuous.  There are huge problems around the world.   Accept my apologies but I'm trying to face this, make sense of it.

I gave up sewing...the only way I contributed to our family income and quite frankly my best talent.   I figured if I slowed down with that my arthritis could slow down and heal and I'd come back stronger and better!

So here I am.  In need of a passion,  a pursuit,  a feeling of contribution in this world.  My sites are being way way way scaled down in the hopes that I can continue being a loving and present guide to my children.  It is hard just meeting the 4 year olds basic needs through the day and getting everyone else where they need to be on time. 

It's weird and frankly depressing to me to reduce my goals to that point.   I want to be a doer, an achiever, big big big!

I need peace about being small and calm.  And feeling loved. 


  1. Hugs. It may be hard to see it now, but I still a big life for you. Maybe not right now, but possibly in the future.

  2. I can relate and empathize. I have MS and I know what you are going through. I was diagnosed 25 years ago. You will go through many emotions. Denial, disbelief, anger and fear. Don't be afraid to ask for help. Don't try to process this all at once. Take it day by day


  3. Oh to not be able to read! But have you heard of audible? Lots of good audio books available out there!


Thanks for your comments~!