Saturday, June 14, 2014

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


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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  1. I'm glad I popped over the the IIAW page especially because I've learned a lot today. I had not hear of Raynaud's until now, but I can definitely empathize. Your comparison to losing hair due to cancer treatment and losing a portion of an extremity is not one for anyone else to judge since we have not had your experiences. What I will tell you is this: Some of us (cancer sufferers and survivors) are attached to our hair as part of our identity, attractiveness, etc. and others of us think of it as just hair. I'm the former person. I was devestated when my dreadlocks started to loosen from my scalp I was numb because I had tried to not put attention to it in the hopes that I would make it through the intense treatment with my hair. I decided to have my best friend cut and shave it off because the locks were attaching to each other at the root and forming a short of wig. Just the slightest pull and the last strands came right out of my head.

    I mourned my hair, I mourned how it made me look and feel. I'd already blown up from steroids and had gained weight from the various medications it was one of the last things I lost control of. So, I can imagine the losing control part is very similar. Now, for me I suffered through Multiple Myeloma, but I also have fibromyalgia and Sjogren's syndrome. All three are autoimmune disorders that cause wide-spread pain. Every joint, every bone screams. The exhaustion, injections, 20+ pills a day and oh back to the pain.

    I think you and I can understand each other on a different level without the need to compare ourselves because we are each fighting a battle that we can not defeat, but we can somehow overcome. I have battle scars over my chest and I look wartorn (a bit of an exaggeration, huh?)...

    I would not compare our pains and loses, but I will say we are sisters fighting invisible illnesses. Each on their own path, trudging through their own struggles. Taking one day and sometimes one second at a time. We are sister warriors.

    1. Petula, thank you for sharing some of your journey with me! I completely agree, we are sister warriors. Everyone fights and manages their illness in the way that works best for them and we each have a unique journey, no two of us are the same. I understand where you're coming from and know that you have fought just as hard as I have to continue living and to survive. I'm glad you found my blog and I hope you keep reading. I'd love to stay in touch. May you find some relief soon and don't forget to keep living your life despite the struggles and pain (even that means just showering and putting on a clean pair of PJs :) )