Losing It

“Anyone who has lost something they thought was theirs forever finally comes to realise that nothing really belongs to them.”
― Paulo Coelho (Retweet This!)

As a poet I should probably not admit that I am slightly obsessed with Jewel. (Yes the singer/songwriter who wrote a terrible book of "poetry.")...BUT, I am. Her music got me through those pesky years of puberty and teen angst and I enjoy the fact that I can sing the songs in the same key. While listening to her music and reminiscing about the "good ole" days a couple of years ago I was reintroduced to her song Hands. It was one of the pretty popular ones back in the day. And while I felt its meaning then, it has taken an entirely new meaning in my life now.

As a patient of scleroderma, one of my biggest challenges the last two years has been dealing with the limited use of my hands. It is extremely debilitating and frustrating to not be able to do things, anything because the tips of your finger ache, or because your joints and knuckles curl up and your skin tightens.

I subconsciously anticipate severe pain with every single thing I touch. It hurts to pick up a bath towel, turn on a light, hold a utensil, use my car key to turn on the engine, hook/unhook my dog's chain, pick up a coin, squeeze the toothpaste, brush my hair...My hands are affected by every task I do and I think I've programmed myself to protect them from pain...My right hand is worse than my left and I always reach out with my left hand to shake another person's hand, which sometimes seems awkward, but I have to be in protective mode, otherwise the slightest unexpected touch can send me into a pain that makes me hold my breath until I can shake it off!- Joanie, Akron OH

If you want to work in this world, be productive, take care of yourself, feel empowered and be independent, you need your hands. Of course, many people get along without them, they've learned to adapt and make adjustments. But those first few months of limited mobility and use are hard.

One of the symptoms of scleroderma is known as Raynaud's Phenomenon. I have another blog post about it HERE, but in short, Raynaud's causes the blood vessels in the extremities (fingers/toes/lips/nose) to constrict, reducing blood flow and causing them to turn blue/purple and to tingle. It is usually triggered by cold temperatures and stress (I will always live in TX) After too many episodes  or years of living with this symptom, patients can develop painful ulcers on the tips of their fingers and toes.

Photo Courtesy of Jess- Scleroderma Strong

It feels like I've got 'ice burn' as if I had put my bare hands on a block of ice and kept them there! I get ulcers on my fingers which can be the most severe pain I've ever had , if someone offered to chop my finger off I would say DO IT !!!!- Karen, Great Britain 

If you suffer from Raynaud's you are not getting enough blood flow to the extremities which in turn makes it harder for these ulcers to heal, which can lead to infection. If left untreated, these infected ulcers can get gangrene which could lead to the necessary amputation of the fingertip or entire digit.

"My Raynaud's is worse then labour. Pain that never stops. Enough to make you go crazy."- Silvia, Woodbridge, ON

"My Raynaud's feels like Needles and razor blades with frost bite."- Karie Ann, Kansas City, MO

Over the last year, I have experienced all of this. (Check out pics of progression) Of all my trials and tribulations, I can honestly say that the deterioration of this one little fingertip has been THE most painful and draining experience so far. (Not emotionally, but physically). I have lost countless nights of sleep, spent hours hunched over on the couch holding my hand agonizing in pain popping narcotics that didn't work, and was forced into a hospital bed for a 6 day infusion treatment that did nothing but set my veins on fire and cause multiple bruises on my arms where they couldn't find a vein. 

I wouldn't wish this experience on my worst enemy. I didn't go through several rounds of chemotherapy (and I AM thankful for that) but over the last year (the ulcer started as a scab last March and got worse) I have felt pain and loss like none other and although I have kept all my hair (though it's falling out from stress) I lost a fingertip. A part of me that won't ever grow back or be the same ever again. And though I will do everything I can to prevent this from happening again- there is no guarantee. (Another ulcer has already begun to form on the index finger of my left hand- yay)

"In the winter when I do have Raynaud's with the ulcers, my fingers hurt like no other pain I've ever had. For the ulcers to be so small, sometimes I feel it'll feel better to cut the whole finger off..."-Brittany, Winnsboro, SC

I have had to learn how to live with a hand and a half. I have had to relearn how to live and function as a left-handed person. I brush my teeth, eat, clothe, shower, open jars, drive and do my hair mostly with my left hand. Those first few months sucked. But, I'm getting better and better at it each day, and for that I am thankful. 

I guess what I now understand about Jewel's song is that our hands belong to us and yet they belong to the world because it's what we use to make, create and help others with. My hands are not "whole" but that does not mean I am broken. I still have something to give and what I choose to give, make and create is my choice. 

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As a writer, the loss/disability of my hands is frightening and yet, because I am writer it is what makes my story that much more powerful. 

We find it shocking and yet admirable for cancer patients to show off their shaved/bald heads, I wonder if my shortened finger stub will incite the same response?

To read more quotes from scleroderma patients about what Raynaud's feels like go HERE

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What do YOU think of my fingertip amputation? Is it a similar experience to the loss of hair that chemo patients go through? Did I go too far? Are they 2 different experiences? Please share your comments below. I want to hear from you!

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