Whatever That Looks Like in the Moment

Two months ago, I agreed to give psoriatic arthritis treatment another try. The first time didn’t exactly end well, and the doctor who treated the resulting hair loss warned me it’s likely to happen again if I went on another TNF inhibitor.

But when do I ever listen?

So I start Humira injections in three days.

At least I know what signs to look for this time (worsening psoriasis, hair loss, symptoms of drug-induced lupus). My hair loss specialist and I have a plan in place, should I need to see him again, and my rheumatologist’s office is already on board with me stopping this treatment at the first sign of trouble. I can’t say I’m not nervous. I’m actually terrified. Many of the side effects I experienced from Remicade have since cleared up, but other symptoms remain, like rosacea. I can’t help but wonder what fresh hell Humira could bring.

But I’m trying to be brave, whatever that looks like in the moment.

Now, the whole stabbing myself with a needle thing? Not worried. Not only is it a “pen” I simply click, but my grandpa had diabetes and I grew up assisting him with his insulin injections. Between that and spending more than half my life immersed in the medical world firsthand, I like to believe I’m desensitized.

That’s right. My ridiculous brain short circuits at the idea of making a simple phone call, but I can transform into a human pin cushion on infusion days without batting an eyelash (a port-a-cath’s been mentioned again—and my answer is still no).

As I write this, my mental to-do list grows. Make a station for the sharps container. Set reminders on injection days. I had put off setting up my first delivery and didn’t expect for them to send it out so soon after making the dreaded phone call. It’s almost better this way. Less time to talk myself out of it. Still, there’s so much to do in just three days… And not a lot of energy to go around. Shower before so I don’t have to worry about showering after. Update medication list.

So, Humira starts in three days and I’m not worried, but on the other hand I am in fact very worried. Cool cool cool cool cool cool.

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Photo by Clay Banks on Unsplash. [Image Description: Arms reaching up, hands covered by a pair of blue surgical gloves.]

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EDS Awareness Month | Dear Diary #8

Previously. Welcome to Dear Diary, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

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Photo by kevin laminto on Unsplash. [Image Description: The person behind the camera holding up two yellow daisies amongst a whole field of yellow daisies.]

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Happy EDS Awareness Month! Ehlers-Danlos syndrome is a connective tissue disorder with over fourteen subtypes. I have hEDS, or hypermobile Ehlers-Danlos Syndrome. My symptoms range anywhere from soft, velvety skin, to experiencing multiple joint dislocations and subluxations per day.

Personal

Lawmakers are trying to control what I can and can’t do with my body, but what else is new? #AbortionIsHealthcare

Health

My autonomic specialist tweaked my medication regimen, adding two more things and adjusting the dosage of another. Maybe it’s wishful thinking, but my quality of sleep might actually be improving? I’ve dealt with insomnia and chronic fatigue syndrome for the better part of ten years. Waking up slightly less exhausted than usual would be game changing. I don’t want to jinx anything, but idk, y’all… Maybe I’ll finally be able to wake up before lunch someday in the not-too-distant future.

Remicade update: I thought I dislocated my knee, but it turns out I’ve just never seen it without it being swollen beyond recognition. I’ve had arthritis for over half of my life and injured my leg, triggering POTS, at twelve years old. For the first time in over a decade, I can see my knee! I was chuckling the whole way home from that doctor appointment because I had seriously been convinced it was broken, or otherwise injured. But nope! I just…have a knee.

Music

1. Lion – Hearts & Colors
2. Dear Winter – AJ
3. Heaven, We’re Already Here – The Maine
4. Strange Love – Simple Creatures
5. Without Me (Pâquerette) – With Confidence
6. Smells Like Summer – Early Hours

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Blog Changes:
– New Twitter handle: @DanielleDiBona
– Added blog post categories to header links.
– Added and deleted some sidebar widgets.
– Made cosmetic changes to the homepage.
– Fixed Goodreads link among the footer’s social buttons.

The Gifts of Remicade | Dear Diary #7

Previously. Welcome to Dear Diary, a series where I talk about the little things going on in my life that don’t necessarily warrant their own individual posts. Please, feel free to do the same in the comments! So… What’s new?

Photo by Aaron Burden on Unsplash. [Image Description: Bokeh photography of an open book near a yellow ceramic mug.]

Personal

When I went searching for my previous Dear Diary, I caught a glimpse at the date (April 20th) and almost choked on my own saliva. Has it really been eight months?! On a semi-related subject, does anyone else feel like 2018 has been dragging on forever? No? Just me? Fair enough.

In my last Dear Diary update, I mentioned my bedroom resembling something out of the movie Twister. Well, nothing’s changed, except for the fact that I moved my bed over a couple of inches so I’d no longer have to bang into the corner of the frame every single time I entered the room. It’s the little things in this chronically klutzy life of mine.

All of my holiday shopping is done, thankfully! How are you at gift giving? Because I’m positively terrible at it. I never know what to give anyone and of course when I ask what they want I’m always met with nothings and I don’t knows. This year was no different. Though, I do have to give my mom some credit for at least telling me to get her a candle. How I managed to make picking out a candle scent a two-hour process, I couldn’t even begin to explain. World’s best gift giver over here, I’m tellin’ ya!

Health

There were two or three good health days over the past couple of months, which is new and unusual for me?? I’d actually forgotten what having real energy felt like. I was tired, but not fatigued. Doing one simple chore around the house didn’t leave me bedridden the rest of the day, as it typically would. It was an incredibly bizarre experience, to say the least.

Oh, and I finally started those Remicade infusions that my rheumatologists and I have been discussing for a solid year now… I was certain it was too early to have had any positive results, but a follow-up visit with my rheumatologist proved me wrong! The psoriasis on my scalp is gone. I’ve had issues with my scalp for most of my life, but it was one of the many things we put on the back burner once all of my other health issues arose. I laugh when I think about how we finally found out what was going on with my scalp last summer at an unrelated dermatology consult, only to have it cleared up a few months later with Remicade! With psoriasis clearing up and experiencing those few precious fatigue-free days, I feel hopeful about the future of my health, for the first time in a long time.

For anyone curious, we’re hoping the infusions will help with psoriatic arthritis and the damage in my SI joint. The place where I get them is down by my rheumatologist’s office, so it’s a hike, but once we hit farmland we’re pretty much in a Hallmark movie, A.K.A. my happy place.

Music

1. Move – Milo Greene
2. Better Life – P!nk
3. Might Not Like Me – Brynn Elliott
4. Let’s Fall in Love for the Night – FINNEAS
5. What a Feeling – One Direction
6. Benzos and Cigarettes – Rad Horror

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Blog Updates:
– Updated About page.
– New Twitter handle: @ChronicallyDan
– New Instagram handles.
— Personal: @ChronicallyDannie
— Shop: @ChronicallyDannieCo

Hello, Arthritis, My Old Friend

Photo found on Unsplash.

Remember when I pledged my undying love for spring? Yeah, well, that was before I was reminded of the saying “April showers bring May flowers.” The saying should have gone, “April showers bring arthritis.” Sure, it may not make the best greeting card, but man is it relatable!

Hello, arthritis, my old friend…

Full disclosure, I’ve been wanting to make that joke all week.

With Ehlers-Danlos Syndrome (EDS), Chronic Fatigue Syndrome (CFS), Gastroparesis (GP), and all of my other illnesses, I’m no stranger to chronic pain. Though I am lucky enough that it’s not an everyday occurrence and, when it does decide to show up, it rarely gets higher than a six. (Keeping in mind that pain scales for the chronically ill are typically different than the healthy. For example, a six for some could be a ten for others.)

My arthritis has been a three, at most a four, so it’s not too bad. It just hasn’t shown up in a while. Since last spring, probably. It started last week in my left foot, stretching up to my knee, which makes sense because that’s where my crush injury was. It’s fitting, considering the anniversary of my diagnosis recently passed. Anyway, it’s since traveled from my leg to my elbow, back to my knee, down to my foot, up to my wrist, and, as of right now, down in my foot once again. I’m just glad it’s not making friends with my EDS shoulder/neck pain because that’s an eight on its own…

While I’m at it, pollen is also a thing that exists. Why is that?

Needless to say spring and I are not on the best of terms right now.

I only take Tylenol Arthritis when I really, absolutely, without a doubt need it. I don’t know why. I’m like that with any type of pain or normal person illness, always have been. I guess with all of the medication I’ve taken over the years (though I’m not currently on anything besides Lunesta and SaltStick tabs) I don’t want to take something unless I can no longer stand it. Is that healthy? Probably not, but I’ll leave that for you to ponder.