Plight of a lupie

A lupie is someone who has lupus.  I find this an interesting term.  I am not yet convinced it is a compliment, however I am convinced that those with lupus do find themselves in difficult circumstances regarding their health.

How do I know this and why am I so convinced?  I was diagnosed with lupus this past August (2014). After almost two years of thinking I had arthritis, and two weeks in acute care, there was relief - emotional relief anyways - in hearing the phrase "it's lupus, you have lupus".

And so, after months of being off work, an attempt to return to work, sleepless nights, painful days and a lot of frustration...I continue my journey towards remission.

The extent to which this disease has and continues to affect my family and daily life is at times staggering, at others merely an annoyance, but the disease is always there.  Whether in the way I bump into furniture and sometimes other people because I cannot hold my balance, or the way in which I cradle my arms because of the pain I am experiencing, or the frustration I cannot control in part because of medications and in part because I'm not having fun dealing with this disease, lupus is always here.  It is always a part of me.  It seems to always be robbing me and my family of something.

And yet...there's that joy in the pain.  There are the moments of laughter - that yes, cause the pain to increase for a moment because of the chuckling and movements from laughing hard.  There are the moments when our family is brought closer together because we have to lean on each other and depend on one another - even when it is a nuisance because I used to be able to do something that I always thought held us together.  My children continue to learn new life skills as they are asked to pick up the slack at home.  My children continue to learn empathy and compassion that will undoubtedly benefit them and others in the future.  My husband and I continue to learn that communication is key to any relationship, especially when there is a chronic illness.  I am learning that work will still be there when I am able to return and the building will not burn down without me there.  And we continue to witness how our community is lifting us up in prayer, in their thoughts, and with tangible gifts of rides to places when I am unable to drive, meals when we need a hand with food prep, and other appreciated ways.

Faith continues to sustain me in the moments when I feel low and unhappy.  It has not changed my circumstance (much like when my first husband died, faith did not bring him back) but it does change how I view my circumstance.  I am not walking this journey of lupus alone - I have a community, a family, and a God walking withe me.  I have hope, in the doctors and in the plan God has for me, that remission will be part of this story.  I am listening to words of hope and promises, God's word, for guidance and peace.  I am still showing up for life, there is still much life to live even with lupus.  Some days are darker, lonelier and more sad than others, but there is always another day, a new day, a new opportunity to view this journey with excitement and joy.