I was supposed to be normal today (well, now yesterday, I suppose…) I was supposed to go to the Skillet concert with David and my endo sister April and her daughter. We had box seats and everything. Sort of an early birthday present. I love Skillet and I’ve never had the chance to see them live. And I was going to write an awesome blog post about how much fun I had and how great it was to do a normal activity for a change.
But do I wake up feeling well? Nooooo, of course not. My head was pounding (and going to a rock concert wouldn’t be the best cure for that.) My head felt like it was detached from my body. And the room was a little spinny. So I had to bail. But at least the three of them got to go and they had a great time (thanks April for the picture above!) And seeing my friends and family enjoy themselves gives me joy.
But I’m sick of it. (Ba-dum-tuss if you’re a Skillet fan…) No, I’m not sick of the joy part! I’m just ready to lead a normal life again. My surgeries are over. I should be feeling better. But I don’t. I’ve been starting to feel worse over the past two weeks. And I’m not happy about it.
See, this is what chronic illness is all about. You’re fixed, but you’re not. You’re simply managed. It’s chronic.
I had my endometriosis excised two years ago and haven’t had a problem with the endo itself since (because Dr. Sinervo rocks my world) but still needed another pelvic surgery due to something that possibly happened as a result of the excision surgery. Yet I still have daily chronic pelvic pain, because that’s sometimes what happens with endometriosis, even if there is no disease present (which I know there isn’t; my surgery in July confirmed that.)
It’s now been a month since my brain surgery. Yes, yes, I know, I’m still healing. It was a benign tumor, but not a benign surgery by any means. Healing from this will take a long time. The pituitary gland is the body’s “master gland” and some of it was lopped off during my surgery to make sure the whole tumor was removed, so it’s going to take awhile for it to resume normal functioning again. Hence the reason I feel like trash all the time; why I’m sleeping 12-16 hours a day and why my head hurts and why I’m so fatigued I can barely leave my bedroom and why I’ve started to have dizzy spells again. Hopefully my blood tests will indicate if I need to start taking hydrocortisone or increase my Synthroid dose due to damage to the gland that it can’t compensate for on its own.
But if that’s the case, these changes and new medications may be for life. The tumor is gone, but the effects of the removal may always remain. Everything comes with a price.
I have to go back to work in two weeks. And I’m terrified. My third week back I’m working nine days in a row just to get Thanksgiving off. (Because it would be nice to, I don’t know, spend the holiday with my family for the first time since we got married six years ago?) Working that much is going to kill me. I’ll probably spend the whole holiday on the couch at my parent’s house. But work is hell, especially this time of year. It’s respiratory season, flu season can hit any time, and we have tons of kids come through with pneumonia and other icky things that need IV antibiotics and oxygen.
I honestly don’t think I’ll be ready. But there’s nothing I can do about that. Absolutely nothing.
I just want the old me back. The more durable version instead of this beaten up one.
I’ll just console myself with these awesome lyrics from my newest favorite Skillet song, Stars ✨ (which of course they played and I missed it!)
If you can hold the stars in place
You can hold my heart the same
Whenever I fall away
Whenever I start to break
So here I am, lifting up my heart
If you can calm the raging sea
You can calm the storm in me
You’re never too far away
You never show up too late
So here I am, lifting up my heart
To the one who holds the stars…