I’m being taunted by this blinking cursor on this blank page. Rather than writing, I keep thinking of funny things to post on Facebook, so I bounce over there and do that instead - it’s easier than processing my current thoughts and feelings about what’s been going on with my headache situation.
I was off of the prednisone for about a week when I got slammed with another debilitating headache that lasted an entire week. So, right back to 40mg of prednisone daily I went. It took about 5 days for things to level out again.
The week after that last flare was almost as bad as my headache week. I felt like I was in a fog. My therapist dubbed it a “Level 10 pain week hangover.” I didn’t feel like myself. Everything was a struggle. I had no energy. I was most definitely depressed, but luckily things started to level out and by the following week I was feeling significantly better.
Currently, the steroids are the only thing keeping me from being in debilitating pain every day. Unfortunately, the lowest dose I seem to be able to take before things start getting out of hand is 40mg. My body is elated to be functioning every day… but it’s also freaking the fuck out because steroids are the worst/best.
I have a habit of intellectualizing my feelings, especially where my health is concerned, so I’m going to do my best not to do that here.
I’ll start by saying it’s not at all pleasurable to look in the mirror right now. If you don’t know, a common side effect of corticosteroids is what I like to call “moon pie face.” They make your face balloon up and (if you’re me) get nice and rashy. On my last round, it was my back and shoulders that broke out the worst. This time, it’s my face.
Intellectually, I know I don’t look “ugly.” But, I don’t feel like I look like myself either. I definitely don’t feel attractive and the last thing I need is for people to jump in to tell me I do, because that’s not helpful. I texted photos of my moon pie face to one of my best friends today and their acknowledgement of its severity was far more helpful than if they’d told me it wasn’t that bad.
It is that bad. Thank God for masks being required public attire these days.
But then I feel a little ridiculous for caring about that when the alternative is debilitating headaches and nausea every day. It’s a seemingly small trade off. If I can function, moon pie face shouldn’t really matter. But that’s not the biggest problem with being on high doses of steroids for extended periods of time.
The good news is, my orthopedic surgeon says I don’t need to worry about what the steroids are going to do to my hips because they’re already fake - meaning there’s nothing for the steroids to attack there.
He is concerned about my shoulders and knees. He understands why I have to be on steroids but he’s also team: Get off them ASAP. But I mean… we’re all on that team. My primary care doctor and my neurologist don’t want me on them any longer than absolutely necessary either.
The trouble is, we still don’t know what’s causing my headaches and every other medication we’ve tried hasn’t done a single, solitary thing.
Not knowing what is happening in my body and how long I’m going to have to be on these steroids is weighing on me. I’m tired and I’m trying hard not to run out of hope.
Yesterday my neurologist decided she’s going to refer me to a headache clinic. I’m not sure which one yet, but she said it would likely be in Chicago or somewhere in Michigan. I’m waiting to hear back. I’m trying to feel optimistic about it, but I’m also losing faith in doctors and their ability to figure out what’s happening.
I worry they’re going to try and go down the migraine path and try a bunch of stuff we’ve already tried. I worry it’s going to end up being another dead end. I worry I’m running out of options. But part of me still feels hopeful, like maybe this will be the place/doctor that gets to the bottom of the issue and comes up with a long-term solution. I hope it happens before the steroids start doing irreparable damage.
I have to remind myself daily that this isn’t my fault - that I’m not causing this to happen. I didn’t bring this on myself. It’s such a broken record, but it’s so hard not to internalize what’s happening and take all the blame. It is my body after all. Shouldn’t I be able to make these headaches stop? Shouldn’t I have more control?
These are questions every single person dealing with chronic pain and chronic illness grapple with. So few people outside of our community understand, and how could they? Their bodies function like they’re supposed to. In their minds, we must be doing something wrong if we’re not getting better, but we know it’s not that simple.
I’m between a rock and a hard place right now. That’s my reality.
I’m unbelievably grateful for the prednisone and its ability to allow me to function day-to-day. I’m also deeply concerned about the fact that I have no idea how long I’m going to have to be on it and what long-term effects it’s having. I’m frustrated by the lack of progress.
You can be grateful and concerned at the same time. You can be relieved in some ways and worried in others - at the same time. You can be a whole lot of contradictory things all at once. It’s human.
I realize I have very little control over all of this right now. I know whatever will be, will be. I just hope “whatever” consists of answers and functional treatments, and not… well, more of the same.
Today feels a little heavy, and that’s okay. I’ll take a walk. I’ll rest. I’ll be gentle with myself.