Archive for April, 2011

April 26, 2011

Party hard

by Living with RSD: what comes next?

We had two parties this weekend. One for a 50th wedding anniversary and the other an Easter party. I knew ahead of time that this would drain my energy, but it still comes as a shock to me. It was the first time that both of my families saw me since my last surgery. Massive storm fronts brought some much needed rain to the area and also brought my hand tremors back. I have a difficult time eating and using utensils. Naturally, both parties were buffet style. I managed to get away without spilling, but not without many stares.

I say all of this not for pity or because I feel bad about myself. The tremors don’t really bother me. I’ve figured out ways to manage with them. The stares are what I find difficult. They remind me that I should feel sorry for myself. That what I’m going through isn’t normal. It reminds me of the loss that I feel. I wish that I could say that I’ve resolved those feelings, but I haven’t.

I have a beautiful pair of Calvin Klein sandals with a heel that I bought in January after my second implant. I’m still working in PT to get in those heels. I really wanted to wear them this weekend. The loss that I feel/felt isn’t so much about the tremors. It’s more that I couldn’t get in those heels. I’m beginning to wonder if I ever will.

To go full circle, I wish that people wouldn’t stare. I wish that they would ask how I feel and what they could do to help. There is nothing that they could do. But , sometimes it’s nice knowing that they would be there to lend an ear if I needed it.

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April 23, 2011


by Living with RSD: what comes next?

My thoughts about angels has changed over the years. Growing up, I believed in the Rafael angels that were on the top of a cloud watching over us, remote and heavenly. Innocent and pure, untouched by the worries of the world.

Now, I’ve come to believe that angels are everywhere.  It’s up to us to recognize them.

I have a friend at work who is one of my angels. She’s no saint. She’s not innocent or pure.  I know she wouldn’t mind me saying that.  But, she came to me at one of the lowest points in my life.  I was empty, but I didn’t know it. I didn’t realize how sad I was until she asked me. I felt trapped, but I put myself in my own prison. No one else. Just me.  She made me realize that I had the key to get out the whole time. 

. She saved me as much as any angel sitting on a cloud.
I’ll always look towards the clouds and heavens for help and guidance. But, now, I also know that I can look on Earth into the hearts of friends, even strangers, to reflect kindness and love as I try to figure out my ever after.

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April 14, 2011

Shoes in Holland

by Living with RSD: what comes next?

I don’t remember the shoes that I was wearing when I had the car accident, which is funny for me. I’ve always been about the shoes. Growing up, I never did try on my mother’s shoes. I wanted to tell my own story. When I got married, I had beautiful white Kenneth Cole Mary janes with a sturdy heel since I would be on my feet. For all three of my surgeries, I wore my brown knit Uggs. My comfort shoes. When I broke my foot, I had cute Italian brown leather wedge sandals from J Crew. I was traveling in Santa Monica for business. Some people build their outfits around items of clothing. I build them around my shoes. I have RSD, or Complex Regional Pain Syndrome, in all four of my limbs. To manage the pain, I have two Spinal Neural Stimulators that have been implanted in a series of three surgeries. I take daily doses of nerve medication and supplements to manage pain. At this time, I also have PT twice a week. My team of doctors include a pain management specialist, my general practitioner, a neurosurgeon, an orthopedic and the team of physical therapists that torture me on a weekly basis. I could dwell on the inequity of life, how bad things happen to good people, etc. Really, I think mostly about the shoes. I am reminded of the poem, Welcome to Holland
Sometimes, life isn’t what we thought it was going to be, but that doesn’t make it bad.
So, my journey begins now. How to deal with the ever after. There are two pairs of shoes that I miss the most. My prized black patent leather Manolo Blahnik Mary Janes and the running shoes that I wore for my first marathon. I don’t know if I’ll ever get back into those shoes, but I have hope. May be it won’t be those. May be there are new prizes ahead of me. I hear that Holland has those cute wooden flats.