Monday, October 19, 2015
I'm currently back in the hospital for another round of treatment to try to revive my dying feet. I call them my 'dead Barney' feet since they often vacillate between roaring fire red and deathly purple. And always pain-filled. My hands, face and entire legs behave the same way now, but it's my feet that are most threatened currently. So it's off to the cardiac wing for 7+ days every 5-6 weeks. It's unpleasant to say the least, but I love the nursing staff, which helps bucketloads.
One of my nurses told me that there was a 22 year old girl down the hall from me, recently diagnosed with EM. She is here for her first treatment and she's scared.
Immediately I felt compelled to ask the nurses to wheel my big bed over to visit her and talk her down, but I'm struggling with not wanting her to see what full blown EM looks like: claw hands and dead Barney legs, Santa red cheeks and ears. Barely walking, often crying from chronic pain.
It can be off-putting to many folks. Shoot, it can be overwhelming to me!
Am I being selfish here by letting my fears prevent me from going to introduce myself this girl?
My vain brain screams at me not to pursue this encounter simply because of how I look - what my EM has robbed me of over the years. I don't want to overwhelm her visually with what her future will be like, especially on her first (of too many) 'band-aid' treatments, that only offer temporary relief.
I'd like to tell her that she should fight to keep her normal life as long as she can, and not take the small things for granted.
Get healthy NOW.
Go sit in the sunshine and walk barefoot on the beach.
Read your favorite book past midnight just because you can. Dance while you fill up your car's gas tank.
Go on a road trip and take in the local attractions.
This is going to be a rough and bumpy road. We don't have a cure (yet). Let yourself cry, but don't wallow in it. Get a support system into place - then promise yourself to use it.
I might have lost it if I saw what my future looked like 13 years ago. Too much to process so soon after the recent diagnosis. She's struggling just to get through today.
Would I be causing more harm then good by asking to meet this girl?