Note to Self

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You can’t catch up on old projects and work on new ones at the same time. It just doesn’t work that way, especially with chronic illness—and life in general. Sometimes, you just have to accept that shit happens and, rather than “should”ing on yourself, slow down and focus on what’s most important.

Your physical health.

Your mental health.

Your loved ones.

Your wellbeing.

Eerily accurate. #virgo #horoscope #2017goals

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Goals can be adjusted. Production schedules can be rearranged.

So, tomorrow morning, grab a cup of coffee, let go of the things you think you should be doing, and be gentle with yourself.

You’re way more important than any silly schedule.

This Is My #Paingry Face

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It’s five in the morning. My joints are bright hot fireballs of throbbing death. I’m exhausted and have been all day, but the pulsing ache in every single joint of my body is like an alarm clock blaring in my ear. When I’m in pain like this, all I can focus on is the pain. All I want to do is whimper. The only thing I can talk about is how much pain I’m in.

My chronic pain runs my life.

The thick gray smudges under my eyes, the tangled nest of curls bundled up on top of my head, the inward curve of my shoulders—all of it a portrait of the pain I live with when I don’t have a DMARD combatting the inflammation in my joints/tendons. And I’m frustrated all over again, because I’ve been denied those medications. And I’m really feeling it.

I got comfortable. I’d been on SSZ and maybe I took it for granted. Constant headaches and a perpetual metal taste in my mouth seem easy compared to what I’m feeling right now. Maybe I shouldn’t have complained. Maybe I should have kept swallowing the pills and taken what little relief they gave me. I was ungrateful, and now I’m paying the price. The warm summer months rolled in, easing my transition off SSZ. I went swimming. I ran errands. I cleaned my house.

Now I’m lucky I can move at all.

I hate the cold months. I know everyone is reveling in fall right now, but all I want to do is give those who are celebrating sweaters and Instagramming photos of leaves the stink eye. Because for me, October through May is hell unleashed.

If it hurts to die, this is exactly what it feels like.

I don’t mean to be melodramatic. It is five in the morning and I should be sleeping. I’m usually sleeping at this hour. I have places to go and things to do during normal morning hours, yet I will have to choose between resting and getting blood work done. My knees and hips hurt so badly, I feel like I need a wheelchair.

I’d go to the emergency room if I thought they could do anything.

What I need is a different DMARD and a hefty dose of Prednisone to get me through until it starts working. I need a doctor like the ER attending who knew that inflammation was my issue, even if my blood work said otherwise. I need someone like the PA I used to see, someone who listens and won’t give up. Dr. M was becoming that someone, but she left the practice. And now I just feel so fucking lonely and depleted.

I don’t know how I keep doing this. Living with this is the hardest thing I’ve ever done, hands down. And I’ve been through a lot of difficult things. I’m not saying I’d rather go through them again—they were eviscerating enough on their own, thank you—I’m just saying that this is so hard and I’m so tired. I’m out of spoons—emotionally, mentally, and physically.

I’m done yearning to be normal. It’s been nearly a decade. At this point,  it’s not going to happen. I just want some kind of quality of life. I don’t want to burst into tears because I’ve dropped the cap to my water bottle and can’t physically make it across the kitchen floor to retrieve it. I don’t want to feel lonely at almost 5am because my husband went to bed hours ago. I don’t want to slap a temporary painkiller Band-Aid on my gunshot wounds, hoping that Tramadol will bring my pain down to a 8/10. I don’t want to feel like I’m missing out while my husband, brother-in-law, and niece hang out at a gallery and I stay home because I feel like microwaved zombie.

I’m just so fucking tired.

I’m not going to do anything more drastic than smoking a cigarette, but I need all of the love, strength, and support that I can get right now. I feel almost cheesy asking for this, but if you can even just leave a comment with hugs, that would be so helpful.

This probably goes without saying, but I’m taking Wednesday off.

On the bright side, I wrote 400ish* words for SOF4, and it’s officially #OwnVoices because I’ve given Krista my enthesitis related arthritis. Tonight’s—this morning’s?—session was basically just a long description of how much everything hurts her, AKA me. Here’s a little snippet:

Hot twinges buried themselves in Krista’s knees, bringing the world into razor sharp focus. She winced, then quickly smoothed the expression on her face.

“We’ve got to do something,” Perry repeated. “The entire band’s gonna implode if we don’t handle this.” A large curled fist lightly smacked the palm of his other hand, punctuating his last few words.

Her cheeks twitched into an involuntary smile. His passion was endearing. “I’ll let you know,” she said softly, her shoulders curling inward. Sliding her phone from her pocket, she glanced at the time. Shit. It was time to get to class. She swallowed hard. She barely had the energy to walk there, never mind sit through the lecture.

“Hey,” Perry said, his voice low and soothingly warm. “You all right? Your cheeks are kinda flushed.”

Great. She inhaled through her nose, gathering her strength. “I’ve got to go.” With every ounce of energy, she pushed up from the bench. “I’ll talk to you later?”

He shrugged. “Sure thing.” He raised his coffee in a salute.

Turning, she forced herself to walk away like a normal person. Her joints protested, the ache deepening. If that was even possible. She gritted her teeth, stifling the scream rising in her throat. She was so tired—tired of being in pain, tired of trading her life for more rest. And now, with South of Forever in such a bad position, she was going to be even more tired.

* * *

Krista was in a bad mood when she finally got out of class. For one thing, it’d run fifteen minutes over. The pain in her knees had increased, as well as taken residence in her elbows and wrists. For some reason, the knuckle of her left thumb was aching, too—a hot, pulsing flare. Yet, from the outside, her body looked completely normal.

Her phone buzzed in her pocket. Stepping off to the side of the hall she was walking through, she fished it out and read the text from Poppy.

Where are you? We need to start recording. xx

The double exes were like a haphazard “LOL,” thrown in as insurance. Their sole purpose was to placate the terse, demanding tone of the other words. Krista was fluent in girl speak.

Sighing, she texted back a simple “OMW,” and resumed her trek toward the building exit. Her body protested with each step, hinges stuttering when they should have bent smoothly. By the time she got to the double doors, she’d made up her mind.

She opened the Uber app with a quick swipe and a tap, not even bothering to look at the screen. She knew her iPhone better than she knew her own body—a fact that was twice as true, since said body was constantly rebelling. She longed for the warm summer months when she’d have little pain.

Her heart whispered “Soon,” and she shuffled through the double doors and into the sunshine.


*I initially thought I wrote like 600 words, but I just checked the word count and was kind of disappointed. But something is better than nothing, right?

I Have Arthritis

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via Unsplash

This morning I rolled out of bed, stood up, and immediately stumbled. Excruciating pain shot from my left ankle. Gritting my teeth, I hobbled to the bathroom.

On Thursday, October 15th, I was diagnosed with reactive arthritis. After eight years of pain and searching and tears, I finally got my answer. My rheumatologist thinks that, after a few months on Sulfazine, this disease should be gone completely. Honestly, I’m not getting my hopes up. I’m just happy to have answers.

I got the news right before going away for the weekend with Mike. I did some research on reactive arthritis, but it was kind of confusing because most of the information out there is about reactive arthritis caused by STD. As far as I know, I’ve never had an STD, and still get tested regularly. I love and trust my husband, but you just never know in this world.

This AAFP article on reactive arthritis was pretty interesting:

Reactive arthritis usually occurs following an infection in a genetically susceptible person. Over two thirds of these patients are HLA-B27 positive. Those who are negative frequently are positive for cross-reacting antigens such as B7, B22, B40 and B42.8 A recent study9 found a similarity between some peptides found in gram-negative organisms and peptides that are in the binding site of the B27 molecule.

I am seronegative, which means I don’t have the HLA-B27 and my sed rate is normal. I do occasionally have a borderline double stranded DNA. I’m definitely curious to see if I have B7, B22, B40, or B42.

I’m still learning about this disease. I suspect that the mono I had as a teenager caused my reactive arthritis, because the timing is perfect and I’ve had no other major illnesses. But somehow I think we’ll never know. The important thing is that Sulfazine is helping and I’m able to do things like climb stairs. Small victories, you guys.

I thought that I’d feel better once I got a diagnosis, and I do. I still have pain. I still have bad days and nights. Jury’s still out on whether this will actually go away. If it doesn’t, I think I can be at peace with that. I’ve had eight years to get used to the idea of forever. But I am more at peace knowing that this wasn’t all in my head, that it’s a real illness. Now that I can say, with confidence, that I have arthritis, I feel so much better.