Saturday, March 31, 2012

Sand Paper in the Soul

There are times, and today is one of them, when I feel like I have sandpaper in my soul. This is hard to explain, but I bet many of you know this feeling. I will try to articulate this. The feeling manifests as agitation and immobilization. You feel like you have to do something, but you can't get started. Little things are irritating-unbelieveably irritating.

It as if someone or something was inside of the physical shell of who you are and rubbing sandpaper on the inside of that shell. It is not really about circumstances, but they do play some role. It is just a feeling that will pass, soon I hope.

So, for today, I will just observe the sand paper and be still until it passes. It always passes.

Monday, March 5, 2012

Three P's of LuPus

My journey with lupus has taken me from food stamps, near homelessness and disability back to a happy and productive life. It took nine years! For eight of those nine years I have been involved with the Lupus Foundation of Florida, first as a volunteer group leader later adding the role of newsletter editor and facilitator coordinator. After four years on disability, I decided to try to return to work. I accepted a part time position at the Lupus Foundation of Florida and a post as director of music ministries at a small, low stress Catholic church.

Over those years, I have made many lupus friends and I have shared their journeys. Some people can't get past the feeling of being a victim. But for others, something clicks and they take all the anger and frustration and decide to fight like a banshee. My "ah ha" moment came after a visit to a mental health professional who was absolutely clueless. Recently, in a Facebook post, a friend who was diagnosed about two years ago made this post in our support group page. I asked permission to use it.

"Today was the battle of lupus versus ME and I won. I went for my 6th infusion and my blood count is UP...Next week, I am going for the improtant test and another infusion. I KNOW the important test for ferritin will be FABULOUS. When I started 8 weeks ago my ferritin was 25 (normal is 150+) and after three treatments it went to 47. Now, I know it will be 100 next time and then watch out, California here I come, ready or not. I won't let this damn disease control my life; I am in control. Eveyone of you with lupus, fight this disease with all you have and you will win! It takes perserverance, persistance and being pissed off (instead of feeling sorry for yourself). Those are my three P's. I don't usually swear but I will be damned if this disease will interfere with my future plans! I didn't work hard all my life to give in to Lupus when I have so much to do in my "rusty" years. Live, Love, Laugh, and Fight! Love you all."

Thank you L.K.!