My Hands Are Changing

My fingers are twisted.

As much as I hate typing those words, I can’t hide from them anymore. Because it’s not just that they’re twisted. They’re painful and more clumsy. Tasks that I used to be able to do just a few months ago are now nearly impossible. And it’s breaking my heart.

The good news is that the X-rays I had done last month didn’t show any major points of joint erosion. So as bad as I may hurt some days, at least internally, we’re managing my disease well. The bad news is that my fingers are still twisted.

It started out slight, I noticed it one morning a few months ago while examining my hands while I stretched. Just the slightest angle in the tips of the first two fingers on my right hand. They didn’t hurt, at least not more than usual, but it was jarring to see this change.

The twisting has been slight, and if you were just to glance at my hands, you may not notice it at all. But if I lay my hands flat on the table, you’ll see how the first two fingers turn  towards the other fingers. They’re not gnarled, yet, but it is a noticeable difference to me.

Even without the visual reminder, I’ve known my hands were changing. It started around the holidays. I’ve been working on a pretty big cross-stitch design for a good friend of mine. I packed my supplies hoping to work on my stitching while my fiance and I were home visiting my family for Christmas. When my fingers struggled to hold onto the needle, I told myself it was because of the cold weather and the resulting swelling.

Each time I’ve tried to pick the project up in the last few months, it’s the same thing, though. I can’t make my fingers grasp the needle for more than a few seconds. If I can manage a stitch or two, it’s a miracle. So I’ve put away my needles, all my pretty thread, and refused to think about it. I haven’t wanted to focus on what I can no longer do.

It breaks my heart, these little things RA keeps taking from me.

I know I should be grateful for all I still have, and for the fact that this disease hasn’t yet eroded my joints beyond repair. I know I should be happy for all I can still do and that’s where my focus should be. But each time I have to give up an activity I love, it’s a dagger to my heart. It’s a reminder that on some level, my life is not my own. It’s a reminder that I will continue to lose capabilities until I’m left a shell of the person I once was.

I know it’s a slow process and I probably have many decades of happy life ahead of me. I know I will find new hobbies and activities. I know I will continue to thrive and live despite RA and its complications. But there will be a dark part of my heart that will continue to mourn the me I used to be and things I used to be able to do.

Truthful Tuesday: What’s New

My words are still spinning, but here are a few truths I can pick out from the whirlwind:

*I spent an afternoon at the library and then curled up in the park with a book this weekend. It was the best gift my fiance could have given me.

*We’ve had a week of sunshine and spring temperatures. I’ve loved having my window open, despite the pollen that’s bound to trigger an allergy attack.

*We have met with a lady who is looking to re-home her rescue dog. We’re taking things slow because of his long past, but it looks like he may be coming to live with us soon. This makes me happier than there are words to say.

*I have active daydreams of winning the lottery and all of our worries being carried away.

* I tell myself we deserve to win the lottery because we would help so many others with that money, not just ourselves. Many families would be better off, so it has to be a good thing, right?

*We don’t even play the lottery.

*I feel people slipping away and it breaks my heart.

*I’ve been trying to teach myself to knit. I’m stuck on step 2.

*I’ve borrowed Knitting For Dummies from the library. I’m determined to learn.


I Have Too Many Words

I’ve been slacking in my writing again.

It’s not that I don’t want to write, I do. It’s not even that I don’t have words, they’re there. The problem is that I have too many words. They’re a plethora swirling around my tired mind, weaving run-on sentences and partial paragraphs. I feel as though I have too many stories to share, and no way to separate them all.

And so I’ve slacked off. I’ve stepped back from all my projects and have spent most of my days doing the bare minimum, trying to calm the storm in my mind. I’ve had good days, bad days, and mediocre days. I’ve started and stopped half a dozen different ideas in these last few weeks. I’ve become irritated with myself and my lack of motivation, my increase in procrastination.

I keep telling myself it’ll get better.

But it’s been weeks now, and it hasn’t. Just as I think I’ve gotten to where I can sit and write again, something else pops up and my mind spins into a vortex once more. I’m hoping by laying it all out and telling you where I’ve been, I’ll be able to trudge through this barrier I’ve set up and be able to start writing once more. Fingers crossed.

Have you ever had your words get all jumbled up? What do you do to work through it?

Let Me Help You

One of the things I’m loving about therapy is finding the roots of my anxiety. It’s all fine and dandy to find healthier coping skills for said anxiety, but to discover WHY I’m anxious, and curb those responses is an even greater thing.

Yesterday we had a little revelation.

Well, rather, I had a revelation. I’m fairly certain my therapist saw it coming a mile away. She’s good like that.

I like to help people.

I know, I know, that shouldn’t cause me anxiety. But it does. It does because not everyone is receptive to my help, and that frustrates me. Which means I stress about it, dwell on it, and work myself into a tizzy over it.

I know it seems silly. And when I type it out, it sounds ridiculous even to me, but that’s me.

I’ve lived a lot of different paths in my life, and a great many of them were not easy or pleasant. I wouldn’t change those paths because they all led me to my son and my wonderful fiance, but I’d be lying if I said some of those paths didn’t hurt. A lot. Apparently at the very core of me, I’d like nothing more than to spare anyone the same pain I’ve already lived through. Who wouldn’t want to help their friends that way, right?

The crux of it is that I try to force my hard earned knowledge on others who aren’t usually very receptive. My father-in-law who approaches his life with chronic illness differently than I do, the pregnant teenager who is in for a rude awakening, the good friend who overextends herself to the point of an imminent burnout. Just because I can see their paths are causing them pain doesn’t mean it’s my place to try to force them to change. I can offer them my help, but if they choose to continue on their path, I must allow them to live their lives.

I don’t know WHY I’m this way or why  I let it get under my skin SO MUCH. You would think it would be easy to just let it all go, especially when my peace of mind is at stake. Sadly, it’s a battle for me to walk away and let them be. I want so badly to help them, save them from harm and pain that I fret about it until I’m a mess.

Now that we’ve discovered one of my quirks, it’s time to work on finding a better outlet for my energies. Which means I spent last night contemplating starting a local support group, which I’m not sure I have the energy to take on…

What are some of your quirks?

My Hope Was Renewed By You

Sometimes it’s easy to lose sight of it all.

On the days when the pain is more intense, when the fatigue has cloaked me in its quicksand, when anxiety and depression are feeding me their lies, it’s very easy to wonder why I keep fighting.

I’ve struggled this week. While there have been a few good moments, ultimately I’ve been hurting, weak, and exhausted. The little nagging voices have been trying their hardest to convince me that it’s not worth it. That getting up each day and popping the laptop open is just a futile attempt to pretend like I’m actually doing something. That even the triggers from sharing my story weren’t worth it. Really, what good did it do?

Then as I got ready for bed last night, I checked my email. And my hope was renewed.

There, buried among the junk emails, was a note from a survivor, someone who had stumbled upon my post. She reached out to me to tell me her story and that I had helped her. As I read her words, my heart ached for her pain. Tears streamed down my face and I once again railed at the injustices in this world.

She finished by saying, “I wanted to say thank you and it’s kind that you give out your email so that people like me can write out things like this to someone who understands. So thank you.”

My heart clutched in my chest and I was washed over with such a feeling of grace. THIS. This is why I do what I do. Why I get up even on the painful days. Why I work so hard to spread love and hope. Why I relive the trauma every year as I share my story.

Because to know I’ve helped ONE PERSON makes it all worth it. Because no one should ever feel alone in this world. Because two survivors helped to give me the strength to take back my power and rise above the shame and stigma attached to sexual assault victims. Because THIS is how I repay their kindness and faith in me.

So to Someone Who Refuses To Make This Event Ruin Me-

Thank you for reminding me of my purpose in this world. Thank you for trusting me with your story. Thank you for being brave and strong. You are indeed not alone.

Truthful Tuesday: I’m A Survivor

April is Sexual Assault Awareness Month.

Each year as many are carrying out pranks for April Fools Day, I dust off my trusty soapbox and prepare myself to share my story once again. Not because I like talking about what is a very dark point in my life, but because it’s important to me that girls everywhere are safe.

That safety will only come when we can shed light on the darkness and lose the stigma attached to survivors of rape. Whether we’d like to admit it or not, many of us probably have some preconceived notions when we think about rape and sexual assault. I know I did. So here are some truths you probably didn’t know:

*One in six women have been the victim of attempted or completed rape. Look at your six closest friends, one of you is likely a survivor.

*60% of sexual assaults are NOT reported to police. My rape happened out of my state of residence. I did not report at the time and when I tried to report once I was safe in my hometown, I was told I would have to travel back to where it occurred to press charges.

*80% of victims are under age 30. I was 26.

*Every two minutes another American is sexually assaulted. In the time it took me to write this post, 15 people were raped. Fifteen lives irrevocably changed.

*Approximately 2/3 of assaults are committed by someone known to the victim. My rapist was my husband. Many told me this didn’t count, that because we were married, it wasn’t rape. I almost believed them. But the bottom line is I said no and he didn’t listen. He held me against my will and forced himself on me. THAT IS RAPE, it doesn’t matter who he was.

Rape is NEVER okay. It doesn’t matter what a woman is wearing, if she had a few drinks, if she batted her eyelashes, if you’re dating, if she’s wearing an intoxicating perfume. IT IS NEVER OKAY. It doesn’t matter if he was your friend, if the two of you were/are in a relationship, if you said yes to cuddling but then he took it farther than you were comfortable with. THERE IS NO EXCUSE.

If you’re reading this and you’re a victim of rape, please know that you are not alone. You are strong and brave and IT WASN’T YOUR FAULT. Below you will find some links to pages that will help you on your journey to healing. And if you need to, you can always email me at I will always, always be here to listen and hold your hand.

Rape/Sexual Assault Resources

Rape, Abuse, and Incest National Network (RAINN) (All statistics in this post came from RAINN)

Joyful Heart Foundation

I Don’t Listen To Me

One of the greatest questions of the universe:

Why is it so much easier to give great advice than it is to follow it?

I consider myself fairly active in the chronic illness community. Through the Spoons 4 Spoonies page and many others on Facebook, I’m always the positive one. I’m quick to remind my fellow spoonies that we need to be gentle with ourselves, that we deserve patience.

So then, why is it so damn hard for me to take my own words to heart?

Why do I beat myself up when I’m having a high pain day and can’t do chores? Why do I push myself further than is safe more days than not?

I don’t really have the answers. I should know better by now, I DO know better, but I do it any way. I’m harder on myself than anyone else, usually to my own detriment.

I don’t have much more to say today. I’m tired and sore and my mind is in a million different places. The words are all coming but colliding in a mess that I have yet to decipher. I’m trying to be kind to myself, but finding it hard.

So if anyone needs me, I’ll be over here trying to take my own advice.