Deeper Still

You are never alone

The past few weeks have been traumatic to say the least. I’ve still been recovering from the blow that this may be my reality for the rest of my life. I’ve always clung to the thought of being better one day, somehow. Once that slipped away from me, I wasn’t sure what to do and my depression came back in waves.

The gripping truth of the matter settled heavily on my mind, my pain went from bad to worse and I couldn’t even write for a while. I asked my physical therapist about it and she gave me a few things to help strengthen my hands, but with how rainy it’s been my pain has just gone into overdrive. They said it’s normal for pain like mine.

Some days I feel like I don’t understand, it seems like as soon as I conquer one part of living with chronic pain and illness something else comes that totally throws me for a spin.

Being unable to write for the short amount of time left me alone with my thoughts (when I wasn’t going vegetable mode watching Netflix) and I realized it is the way we grow. We struggle with the storm and as I talked about in a previous post, sometimes we may even learn to keep our eyes on Jesus and walk on water.

The trials of the world seemed like they were finally underneath me and I had a grip on a much larger reality than myself. But the storm got bigger and I felt God pulling me further and further out to sea, away from all my safety nets. Even writing was unavailable to me for a while, I had no way to vent my emotions and I fell. Drowning in the sea of troubles.

I couldn’t find myself.

All I saw was darkness and despair, all I felt was that my hope was ridiculous and I drowned. It was as though I had cracked but couldn’t repair myself this time, but slowly, surely over the past few weeks I felt Jesus reaching out his hand and I finally took it. Pulling me above my thoughts, above my pain, above my frustrations and now I take a tentative step forward.

I’m not used to being a water walker and I’m sure with the next big disappointment that comes my way, I may forget who I am and start to drown again. But I also know, when you feel like absolutely nobody else in the world feels precisely how you do at this moment, you are never alone. He’s always walking with us, guiding us and comforting us.

Taking us deeper still, to painful, yet beautiful, places we have never been before.

Here’s a song that resonated with me while I was going through:

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Understudy to Pain

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Pain is the lead

I am the understudy

I’ve learned all the lines

All the rules

Of how to live life

But when it comes time to take the stage

It is never my turn


I’m never in control

I feel prepared, I could take over

I could be the star

It’s not my time

I wait, I practice

Maybe today

Maybe tomorrow


It will be my time

For now, I am minor

I almost don’t exist

I am here, in the back

Silent, waiting

Letting the pain lead my days

Until I can step into the role

And live

Dance Like Everyone’s Watching

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Dancing is probably one of the most therapeutic things I’ve ever done, or singing, or both! The day after I got the news that my treatment wasn’t happening after all though I had looked forward to being pain and disease free, it all came crashing down. I felt the familiar depression and despair grabbing ahold of me, telling me all the lies that I’ve fought so long.

You’ll never be well. It’s hopeless. You’ll only get worse.

All lies.

It used to be that when I felt down I’d put on sad music and cry with it. Nowadays, I put on my happiest most encouraging worship songs. I fling embarrassment to the side and I dance, I sing at the top of my lungs and have an all-out good time.

Normally they say dance like no one’s watching, but my motto is dance like everyone’s watching. Because they are. Whether I’m at home or out and about dancing my way through the stores to keep myself in a positive frame of mind, occasionally I’m approached by people who tell me how positive I am, how good it is to see someone so happy. They also tell me they wish they could be so happy, no matter what.

Well, I’m here to tell you, I haven’t got it easy. No one does, I have to choose to try to look on the brightest side every day. I still cry, and if people could see into the darkness of my mind some days I’m sure they’d be more than a little concerned. But instead, I dance, I laugh and I think about all the positive things in my life.

When I found out once again that I wasn’t going to be all better, something shifted inside of me, what if I’m never better? It was a panicked thought at first, but as it started to settle I realized just as I tackled college without waiting to better, I shouldn’t be waiting to be “better” to be and do everything that I have in mind.

It’s just another chance to rebuild myself and one day it will just be added to the stories I can tell of how I managed to overcome. So, if you’re having a bad day, loosen up a bit. Put on your favorite song, stand up and dance around and sing at the top of your lungs. (If you get weird looks from anyone around you and they know the song, they should be singing too!)

Dance like everyone’s watching, because they are. And I bet they could use a little brightening up of their day too.

Need a bouncy song to get you started? I’ve got you covered:

Pemphigus, Rituxan and Myalgia

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A funny thing happened, well only funny now in hindsight. My dermatologist immediately in January said we were going to hit the pemphigus aggressively with another treatment of Rituxan. The paperwork went through, blood work, but my insurance denied it.

My rheumatologist said the treatment would take care of all the pain I’ve been experiencing, so I got a new insurance and was practically dancing in the streets. I went back to my dermatologist for another blood test this past Tuesday, instead of a blood test he just said it was off, no treatment. It was just too aggressive.

I think I took it as well as anyone would have taken it who has gone through pain for years on end, almost seven years for me, only to be told that this was the year that everything would be gone with one more treatment. Only to find out, it wasn’t going to happen, he wasn’t even going to try.

I cried for hours.

I had never been so close to a breakthrough and I had never believed it so much. Sure, doctors have been telling me for ages they’ve got it all figured out and it was going to be better, but this time, I believed them.

His reaction was strange to me and when I tried to tell him how bad the pain was, he just blew me off and went to the next patient. It wasn’t his problem after all. I did a lot more research on Rituxan when I got home, I know that the treatment is dangerous. Whenever death is listed as a “side effect” you know you’re dealing with something serious.

The first time I got the treatment was the end of 2013, I had two treatments of it and was able to come off the immunosuppressants. I was scared of it, of course. A patient before me had just died from it, but I was so desperate to beat the pemphigus that I clung to my hope in God and went through with it anyway. After that, my body was extremely weak and I didn’t put two and two together at the time, but when I went back to work in 2014 the pain went into overdrive and it ended with me hardly being able to walk.

The more I looked around and saw how other people with pemphigus reacted to the Rituxan, I realized a lot of us ended up with myalgia. It’s not listed in one of the side effects, and it could be just because of the pemphigus and Rituxan mixing, I don’t know. I’m definitely not a doctor, but I think this is something serious that anyone looking at the Rituxan (Rituximab) treatment should definitely be aware of.

The moral of the story:

 It is better to take refuge in the Lord
than to trust in humans. Psalm 118:8 (NIV)

People will let you down, it’s bound to happen. They’re only human after all. Being in pain for this long of a time, I’ve seen the cycle repeated time and time again. It hurt especially coming from my dermatologist because I’ve been going to him for at least 3 years.

I can tell you that through it all God has always been there for me. Every major breakthrough in my illness had the handprint of God on it, there was never any medication or treatment that saved my life, whenever my life had been in danger from this disease I took refuge in God, the one who created me.

I’m still not sure where to go from here, I’ve been working harder than ever at my physical therapy. I’ve researched food that contain natural pain relievers and I’ve told myself daily, it’s going to be okay.

Yeah, I’m not going to be perfectly well like I thought I would be. But I can still better myself, I can make my body stronger and one day maybe the pain will be gone for good. For now, I’m just happy for another day to try.

How to Overcome Writer’s Block

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My writer’s block is actually just procrastination in a fancier form. Even though I feel better mentally after I write, the act of starting to write takes FOREVER! A lot of writers have this problem as well, so I decided to share what helps me to write when I feel like I’ve got absolutely nothing.

Just write. I know we hear this advice a lot, but it has changed my life. Even when you don’t know what on earth you could possibly write, just write it out. Maybe it won’t even make sense, maybe it will. Focus on writing frequently, no matter how you feel at the time, you can then make a healthy habit of continuing to write.

Set a time for writing and a time for distractions. For example, often when it’s time for me to write I’m all over social media. I find myself getting lost into YouTube videos I’m not even amused by. If distractions hold you up a lot, give yourself time for them, but not during your writing time! I usually take breaks after 15 minutes to a half an hour depending on how much I can get done during that time.

Have other projects. No matter what I do, usually when I’m about midway through a book I get burnout. I don’t write in it at all, I’m sick of it and I want to erase the whole thing and start over. Do not follow my crazy thinking. Having other projects on the side helps me not to obsess over a story or a novel that I just need a break from, I try to have a short story and a novel in progress at least. I’m very overactive and I love multi-tasking so I may have two novels and a short story going and I jump around from story to story depending on how the mood strikes me.

Find your ideal writing time. My best writing time is in the morning. It doesn’t mean I’m any more motivated to write then, but once I get in the flow early in the morning, it just keeps going. I can write until my fingers hurt and I need a break. I lose track of time and everything else and just let it go.

I know as writers we can easily get caught up in trying to make everything perfect, or working hard to make a career out of it, but let’s not forget the best part of writing. Love what you do and enjoy it!