Tuesday, May 11, 2010

Coping Strategies

How do I cope with my lupus?  That's a good question.  Most of the time, I manage very well.  I have a strong support system with my family, friends and faith.  But I am not going to kid you, there are days when I just want to hide and cry.  Every day I get up and there is the ever present pain...the draining and exhausting fatigue...and there is also the love and strength.

I talk to my friends on Facebook about this stuff. I talk to my husband and my kids.  I share things with my doctors and my therapist.  My work is supportive.  But..sometimes its the scared or disgusted look of someone I don't know when they see my butterfly rash...my "scarlet letter"...and it makes me feel like a sideshow freak.  They cringe and pull back as if I have the plague and they will catch my lupus from me.  I am an outgoing, warm, funny woman person who loves engaging people.  I thrive on human contact.

When the pain is at its worst, many lupus patients take pain medications like codiene, darvocet, any type of narcotic.  I am allergic to many of those.  I am also allergic to NSAIDS...aspirin, ibuprofen, naprosyn...and acetaminophen doesn't work.  More importantly, I hate taking medications that make me loopy or dopey.  I prefer to use visualization and bio-feed back to help me achieve a meditative state...I called it my "sunny beach".  Most of the time this works beautifully. On those rare occasions that I can't work through the pain or it's too intense for me to focus through, I seek help.

My husband, Keith, has problems dealing with my pain.  It is devastating to him to see me suffering and he needs breaks from dealing with all the intense emotions and stress...we all do.  He has been very supportive and he does his best to help.  I am blessed to have him in my life.  Many husbands would have left because of this.

I can remember a night last year when the pain was so overwhelming that I could barely breathe let alone focus on my "sunny beach".  Keith, was out of town at a legal seminar, while I was doing a round of  IV Solumedrol.  I was feeling pretty horrible and couldn't sleep because of the pain and uber steroids.  My friend, Mitch, stayed up on Skype talking to me while I vomited and cried from the pain.  He told me jokes and sent me hilarious pages from Stumbleupon.  It was like three in the morning when he finally asked me what I needed.  I told him that I didn't want pain meds and he asked me why I wasn't using the visualization.  I sobbed that it wasn't working.  So he proceeded to repeat to me my "sunny beach"...something he and my family had heard me say many times over.

...lush green forest opening out onto a lagoon
...the delicate white sand sparkled in the sunshine
...each grain was warm between my toes as I scrunched my feet into the sand
...the sand became denser as I walked toward the water
...the sand and the water were melded and I could feel the coolness of the lagoon pulling me in
...as I sunk into the vibrant aqua colored water its gentle motion rocked my body
...the water is clear and I can see all the beautiful fish and coral
...I keep sinking deeper letting the coolness of the water and the darkness wash over me
...finally its a deep indigo blue and I am wrapped in the coolness...protected...at peace.

Mitch talked me through that and I was able to focus on his voice and the words and it helped.  It got me through the pain and I could finally sleep.  He stayed up all night with me on Skype...just talking quietly when ever I would start to wake up.  He saved my life that night.

God puts people in our lives for many reasons.  He sends angels to us in many forms.  Find ways to cope.


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