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.

A Day In My Life

I’ve read a few “A Day In The Life Of…” posts lately that really stuck with me.

While each of us walks our own path, there are certain things we all must face. In the spoonie community, the number of similarities increases. But even though we all face similar obstacles, how we overcome them is often different.

While discussing this with my fiance, I was inspired to share with you a day in my life. Not because I think my days are really that interesting, but because I don’t think even those closest to me realize what an average day can look like.

So here it is, an average day in my life.

3:00 am- I’m awakened by my bladder. Since I battle Interstitial Cystitis, I deal with frequent urination and bladder pain if I try to “hold it.” My body is stiff and I am groggy as I shuffle as quickly as possible to the bathroom. It’s a battle between needing to hurry because of bladder urgency and moving slowly because of excruciating pain. I curse my body for waking me for a measly five drops, wash up, and head back to bed.

3:05 am- I struggle to find a comfortable position that will allow me to fall back to sleep. My hands and feet are stiff and swollen, while my hips are hyper-sensitive, even the slightest pressure is causing white hot pain to shoot down my legs. Laying on my stomach seems to be the logical choice, but I know it will cause me to be awakened with horrid heartburn in a matter of minutes.

4:00 am- I’m finally able to doze off again.

7:30 am- My bladder awakens me again.

7:35 am- I crawl back under the covers. Though I know I won’t be able to fall back asleep, the warmth of my bed is where I prefer to be while I wait for the stiffness to leave my joints. Trying to force any activity more than a trip to the bathroom this early in the day will leave me gasping in pain and exhausted in a matter of minutes.

8:45 am- My fiance helps me into the shower. Due to nerve damage in my feet, showering alone is a dangerous thing. I’ve had a few instances where I’ve slipped, so I must shower before he leaves for work just to be safe. The hot water feels heavenly on my sore body, but the effort of standing and washing myself wears me out. Most days I must skip conditioning my hair because I’ve run out of energy. Shaving is a luxury.

9:00 am- I debate which pair of sweat pants I want to wear. If my bladder is causing lower tummy pain, I need to choose the loosest pair so there’s minimal pressure on my abdomen. Equal deliberation goes into picking out socks. I have many fun colors and designs, but which ones I wear depends more on how swollen my feet are. Too much swelling, I must choose the fluffy slipper socks that are nice and loose. My fiance has to help me fasten my bra, the tiny hooks have long since become too intricate for my swollen and stiff fingers to manage.

9:45 am- Now that I’m dressed, I need to set out my morning pills. A DMARD, an anti-inflammatory, a pain pill, a multivitamin, a calcium supplement, a probiotic capsule, and four tablets of Vitamin D. Ten pills to choke down with breakfast, eleven if the pain is really bad and I need a double dose. (This week I also have three steroid tablets and a hormone pill. Fourteen pills.)

9:50 am- I shuffle around my little kitchen, trying to fix myself something for breakfast. The simple option is cereal, but that doesn’t usually provide enough tummy cushion for all the medicine, so if I go that route, I’ll be nauseous all day. If I can muster the energy, I try to scramble up a couple eggs, the protein helps curb the queasy feeling.

10:15 am- I’ve eaten breakfast and am now in my trusty recliner with a blanket over my legs. No matter the temperature outside, my legs and feet are always cold in the mornings. Depending on my mood, I find something on TV or I put on some music for background noise. I’ve hit my stride, this will be the most productive part of my day. I use our laptop to catch up on emails, work on stuff for the Spoons 4 Spoonies site, and write/blog; all while on hold with the doctor’s office or medical transportation to set my appointments for the upcoming week. (I use medical transportation because it’s unsafe for me to drive. Between the nerve damage in my feet and being on pain medication, it’s just not a good idea.)

11:00 am- Another bathroom break. I stop off in the kitchen for a drink on the way back to my chair, even though this means I’ll have to pee again soon. It’s important to stay hydrated, many of my medications can cause nasty side effects if I’m not staying on top of my liquid intake. It’s also helpful to group activities like this, it saves on pain and using too many spoons.

12:00 pm- My eyes are starting to blur from looking at the computer screen, and my wrists are screaming at me. I set the laptop aside and after yet another trip to the bathroom, I curl up on the couch for a cat nap.

1:30 pm- I awake with gritty eyes and shuffle hurriedly to the bathroom. It’s always hardest to move right after waking and I barely make it in time. I feel the tears of frustration sting my eyes as my body yells in pain. This morning’s pain pill is wearing off and I can’t take more for another 30 minutes. That might not seem like a long time, but with joints that feel like grinding broken glass, it is an eternity.

1:35 pm- I have to start thinking about what I’ll make myself for lunch. I need to have it ready as close to 2:00 pm as possible so I can take my next pain pill. After weighing my options, I’ll probably settle for chicken nuggets with crackers and cheese slices, it’s easy and my go-to. If I have some in the fridge, I’ll add baby carrots, celery stalks, or cucumber slices.

2:00 pm- Settle back onto the couch with my lunch and my afternoon pain pill. About this time every day, I start to feel really foggy. It’s hard for me to focus and if I try to force myself to push through it, I will get a crippling headache. Though I have RA, this phenomenon is often referred to as “Fibro fog” and is fairly common in those with various chronic pain conditions.

2:30 pm- The pain pill is starting to kick in and I’m groggy. It’s getting hard to hold my head up, so I lay back down on the couch while trying not to feel guilty about the dishes that are piled in the sink or the baskets full of laundry that needs to be washed.

2:30 – 4:00 pm- I doze off and on while watching TV.

4:00 pm- After another trip to the bathroom, I shuffle out to our mailbox. By now, most of the joint stiffness has receded to a manageable point. I pop in my Pilates or yoga DVD and do some stretches. There’s a lot of poses I have to skip, anything that is weight bearing on my wrists is out of the question. My doctors have me on a limited exercise routine because I have a high risk for fracture. It’s a catch 22 of needing to exercise but not doing too much to hurt myself. Really, all of life as a spoonie is a balancing act.

4:45 pm- I’ve finished my stretches and am trying to find the strength to pick myself up off the floor. I am exhausted and while the stretching felt good, there are shooting pains in my legs and my feet have pins and needles.

5:00 pm- I’m finally standing again. Another trip to the bathroom. Now it’s time to start thinking about dinner. My fiance will be home soon and I like to have it ready for him, if I can. If I haven’t set something in the crockpot earlier in the day, it must be something easy. I forgot the crockpot today, so it looks like it’s going to be leftovers. I just don’t have the energy to stand and fix anything else. I collapse back onto the couch.

6:30 pm- My fiance is home. We fix our plates and tell each other about our days. I’m usually a chatterbox and scattered, jumping from topic to topic. Unless a friend has stopped by, this is the most of my social interaction for the day and I tend to go overboard. I can see in his eyes that he’s getting overwhelmed and I try to stem the avalanche of words pouring out of my mouth. Oh, almost forgot, it’s time for my evening pain pill.

7:00 – 10:00 pm- We watch TV together, or a movie. If my hands aren’t too swollen, I’ll work on a craft project. Sometimes we’ll play cards or a board game. It’s usually low-key since he’s tired from a day at work, and my body is starting its daily decline. At 9:30 pm we set out my monthly shot. They must be refrigerated, so we have to let it come to room temperature before my injection.

10:00 pm- We start to migrate to our bedroom. I grab something small for dessert or a snack so I can take my bedtime medications. Two potassium tablets, the DMARD, the anti-inflammatory, and a pain pill. Most nights it’s a double dose of pain medicine as my day catches up with me and this is when my pain is at its highest. So that’s another five – six pills. While I swab my thigh with rubbing alcohol, my fiance preps my injection. One, two, three deep breaths, a pinch, twenty seconds, another pinch, and I’m all done. We clean the area to avoid any infection and cover it with a bandaid.

10:15 pm- 12:00 am- I will lay in bed and toss about, trying to find the position that hurts the least. All of this movement after my injection means I’ll have a knot in my thigh come morning, but I can’t help it. My body is restless. I’ll play games on my phone or putter on social media while I wait for my medicine to kick in and make me sleepy. I’m exhausted and beyond tired, but my eyes just don’t want to close right away.

12:00 am- My eyes are finally drowsy. After a final trip to the bathroom, I make sure my phone is plugged into its charger and I call it a night. I’ll hopefully get a solid three hours of sleep before my bladder will wake me up to start all over again.

Obviously there are variations to this routine. Sometimes I have a doctor’s appointment in the afternoon. Sometimes we need to go to the store in the evening instead of relaxing at home. Sometimes we have plans. My injection is only once a month. But the idea here was to show a typical day, the little ins and outs of my life with RA and IC.