The Devil’s TicTacs

Oh man. Where to begin?

The last time I posted, the doctor had put me back on a higher dose of Prednisone and started me on Sucralfate again. Basically rolled all the meds back to where we’d started. I was discouraged to be moving backward, but mostly I was immensely relieved to have the symptoms taken care of again. 

I’d had a girls’ weekend planned with some friends over Labor Day weekend - spa day and shopping and a long weekend away in the city. I was so excited to go, but so nervous about what that would look like for me. Thankfully the medicine had started to work before we left. I still had to eat only safe foods (mashed potatoes, instant oatmeal, tuna with mayo, bone broth…) and have decent bathroom access at any given time, but was okay enough to give it a shot. 

Saturday was fun and relaxing and fulfilling, but by the end of the day, my body was feeling pretty broken. I was starting to hurt a lot and my gut was getting angry, and I was starting to feel pretty emotionally drained. My friends all went out for dinner at a fun restaurant, but I decided to stay in instead. It was a difficult decision because I have total FOMO, but it was absolutely the right one. I was really proud of myself for listening to my body and following my gut (no pun intended). I called Derek and the kids, gave them a tour of the house, ate some boring-and-depressing-but-at-least-kind-to-me food, cried a bit from self pity and pain, and then fell asleep. It was honestly exactly what I needed.

I really just can’t push myself to be that busy anymore, even if it’s for fun. It’s hard to remember that my insides are so ripped up and hurting when I can’t see them. I have to keep reminding myself (or really, listen when Derek reminds me) that I am still healing, so I need to be patient. 

Anyway, that was Saturday. 

Sunday was super chill. We lounged around, ate at our leisure, talked a lot, and took naps. It was exactly what I had needed. No guilt for not taking care of kids or family or the house or any of the things. Just relaxation with ma girls. We all had a super lazy day and then decided to throw on some dresses and go visit the temple. Perfection. We ended up staying up super late- playing games and painting nails. It was the first time I’ve felt up to something like that in a while. It’s amazing how awesome “normal” feels after being sick/hurt. 

Monday we got pedicures, went out to lunch, then did some shopping. My body did pretty great the rest of the trip. Still not A+ but a solid B- at least. And that felt pretty remarkable.

I honestly think the weekend away was just what the doctor ordered. My stress level with all of this has been creeping higher and higher, and stress is something that can trigger a flare, so I really need to keep it under control. I have tried so hard to incorporate zen practices throughout my day, to just find little moments to check in with myself and stay happy and chill. But it’s hard. Life is busy. Adjusting to a new normal takes work. The weekend escape was a great reset button. 

Since I got back, my body has actually been doing really well - my stomach, my gut, all of that. My digestive system seems to be regulating itself which is fantastic. It seems the ulcers are healing and the inflammation is settling down. Things there are feeling pretty great there.

Yay for drugs! 

…

Except not really.

People in my Ulcerative Colitis groups refer to Prednisone as the Devil’s TicTacs, and the name is incredibly fitting. While it is fantastic at reducing inflammation and calming my body’s immune response, it has so many horrible side effects that you almost wonder if dying is the better option. I don’t know if I can properly explain how awful it is in my body. Regardless of the long-term effects that it can have in regards to destroying your bones, skin, adrenal system, spine, etc, the mental effects I feel 24/7 are literally hell.

My heart feels like it’s pounding out of my chest all. day. long. My skin is crawling. I feel like my entire body is pulsating. My body actually IS pulsating, as it shakes uncontrollably - making simple tasks incredibly difficult. I genuinely feel like my brain and my body are shaking like an earthquake, and it’s super unnerving, especially as the day wears on. It feels like I’m a cat ready to pounce at any moment, or like an arrow that has been pulled back in a bow and is just millimeters away from being shot out. Like a snake is poised to strike and you have to freeze at high alert as you anticipate your demise. I keep thinking of this feeling as anxiety, but the more I try to understand it, the more I think it’s more like panic.

Then there’s the Hulk Rage. I will be sitting around, feeling totally fine - happy, even - and then something happens (stub my toe, kid makes a face about dinner, someone spills a bit of water on the floor… honestly, it could be anything), and I FREAKING UNHINGE! Scream like a crazy person (think Serious Black in Azcaban), throw a box across the room, emotionally destroy anyone within a ten-foot radius. It’s so bad that Derek and I have had to come up with a game plan of how we Do Family now: I get up and get kids off to school and do my thing. Then I pick up Hazel from school, feed her lunch, and we both nap. Once nap time is over and the kids are home, Derek is in charge. I’m off duty. Derek makes dinner. Derek does bedtime. I’m allowed to join at my leisure but can also hide in my room and watch Netflix or something. My job is to stay sane and relax. It’s pathetic and guilt/shame inducing, but it works. And it’s necessary right now. So we’re doing it.

Oh, and let’s not forget about the menopausal heat flashes, how I suddenly start pouring sweat for no reason at all. Nor how I wake up super sweaty and gross. Nor the uncomfortable (not to mention unattractive) swelling it’s causing in my feet, hands and face (Moon Face is totally a thing… so fun). Nor how it makes me have to pee a TON (though at least it’s just pee). All this while my poor little brain feels like it’s hopping around on acid.* It’s genuinely horrific.

But. It’s helping me not bleed to death or end up with a colostomy bag. So obviously its great too, right? Is a necessary evil less evil because it’s necessary? 

I feel like I’ve had to pick between my body or my brain, and that’s hard. Hopefully I’ll be able to taper off the Prednisone soon, but even that takes months because your adrenal system will crash (which could literally kill you - and does) if you don’t go down like 5mg a week (and that’s the fastest option). I have an appointment with Doc Habib on Monday. I’m going to force him to give me a clearer plan for moving forward and explain to me the whys/hows/whens. I hope. He’s not abrupt or anything; he just has yet to be especially informative. And I NEED TO KNOW ALL THE THINGS! So, I’ll push. Fingers crossed.

PS. This whole thing reads as very whiny and depressing. I hadn’t meant it to be either. I’m FINE. I’m fine. Really. Just really getting rocked by these awful little pills. I have been desperate to find an alternative or something, but it seems they are truly a necessary evil. (My doc asked me at the last appointment if I was still taking the Prednisone. I said I was but I hated it. His reply: “Yeah. Everyone hates it.”) Once my current “flare” is under control, he may switch me over to something else that can handle the maintenance, but Prednisone seems to be pretty much the only fix for a flare. So we adjust.

*Note: I’ve never actually done acid. You may need that distinction after my next post. :|