Why yes, I went and mimicked my post from – holy shit – almost exactly 15 years ago.
I started Tremfya and I am… not feeling hopeful? <<Wrote this a week earlier, more thoughts below…>> I’m feeling resigned. Maybe a tiny bit of hope. Yes, a little. Because why would I do this otherwise? I’m hoping I don’t have to make my diet my entire personality. Wait, too late, it already is.
I hope that I can be a little relaxed and know something else is helping me through potential missteps with Crohn’s Disease.
I hope I will feel even better than I do now.
In other news from 15 years ago, I still adore listening to acoustic and/or live versions of my favorite bands. I crack myself up. So much has changed while so much still stays the same…. blah blah.
I had my 4th colonoscopy in March of 2026. Looked about the same as 2.5 years ago but my terminal ileum had more erythema and… you know what, I know I would want to look this up later, so went to find my notes and screenshot.
I had my MRE in early May. The fact that I paid $1,800 for this really pissed me off.
I was literally PAYING to TORTURE myself. Drinking this shit. Doing the contrast. They had to hold alcohol wipes under my nose for me to not pass out before sticking me in the white tube.
I did do really well except accidentally opened my eyes 70% of the way through. But I had them playing Taylor Swift in my ears. I closed my eyes back up and kept breathing.
I had my follow up with Dr A a few weeks later.
2024 MRE was great.
2026 MRE was great.
“I almost wish something was worse so we would have a better reason to go on meds”
Thanks Doc… you and me both? Maybe? I don’t wish ill on my body but it would feel nice to have a better reason.
It is VERY good that it doesn’t show anything BUT my Pentasa is ending from my insurance.
I was doing SO good on taking that damn medication.
How ironic is it that I made it one of my New Year’s resolutions and I had to abandon it by April? Dec was a little iffy, Jan through Feb was PERFECTION. March clearly had some issues
Went down to 2 or 3 times a day in April to conserve my pills to keep the medication in my body as long as possible…
Ran out of meds on May 16th.
Stupid insurance, look at what you got dealt with. Stopped an $800 a month medication and now you are paying for $100k a year version. Happy with yourself?
I actually feel fine – writing this on May 24th…
Now, reading back, on May 28th I’ve had three days of feeling odd though. I’m not going normally and I feel kinda bleah. Psychosomatic?
Shit, I have this in my head now. I need to add it to my playlist.
Come play my game, I’ll test ya
Psychosomatic, addict, insane
Breathe the pressure
Come play my game, I’ll test ya
Psychosomatic, addict, insane
I got my calprotectin from two weeks ago and it was 34! Under 50 is normal. The lab did call it out as being elevated and said to retest. It was “15” back in 2021(?), so it doubled at the moment… it was 500 and 1,000 over ten years ago…
I made so much progress.
I actually went from 9 cm of “thickened walls” in 2016 to completely normal MREs in 2024 and NO thick walls. No strictures. No fistulas. No nothing.
Dr. A says that because I was diagnosed “young” I technically should be more advanced/worse off. But it’s been 15 years and I’ve been fine.
How can I get Sam to follow my diet? Gah.
My diet has been so important to me. My diet has healed me.
And two years ago in France, I started having French fries and gelato monthly, sometimes weekly. I have been eating my tapioca almond flour crackers at the same rate. If I were perfect on my diet, I believe my body would be completely in remission.
And.
And…
“Taking harder meds means that I am balancing my needs and being flexible. My diet is a system I’ve optimized. I can be flexible with it and not feel that I’m “cheating”. It is helping me AND medication can also help me further.”
I wrote this. I said it. I sort of believe it.
I’m trying this out.
I’m rewarding myself with a super cool work opportunity that I get to do with Sam. Am I bribing myself? Yes I am. NYC, here we come.
Ooh, the wave of sadness that washed over me. Letting myself feel it.
Why, why am I doing this…
I am a “smidge” worse in 2026 compared to 2024. I am now stopping my medication. I am continuing to not be 100% perfect on my diet, more like 88% perfect.
So why am I doing this.
Because I can’t be perfect forever? Because I want to be a good role model for Sammie? Because I want to prevent something bad happening in the future? Do I need to prevent it when I’m already using diet? But I stopped my Pentasa so it’s not guaranteed. Argh.
I talked to Krysta the other morning and whined to her and she said, “Because you may feel so much better than you are today!”. I just need to surround myself with my eternal optimists, Krysta and Angie. Sigh.
Well, it’s done. May 29.
Sam was such a caretaker. She was getting her iron infusion – which is why our mutual nurse scheduled us together. She wanted to drive me down. To be fair, J asked a bunch of times if he could drive us but he didn’t need to go. And Sam was getting iron and not Remicade today so she wouldn’t be exhausted.
The clouds were so beautiful. It rained hard the night before and going over the toll road was perfection. We could actually see downtown LA. And Catalina was super clear.
My favorite type of clouds. One of my favorites.
I signed my consent forms. I already had a million calls from the specialized pharmacy the day before.
The meds were so cold. I am sensitive. My arm was freezing the whole time. I had to put my cozy over it.
I’m not gonna lie, I cried in the shower this morning. But it wasn’t a hard cry. It was more of an… I feel sorry for myself cry.
I feel sorry for myself right now, I want something that I can’t have. Grief. So hard.
But I don’t feel upset that I got Tremfya. I’m not scared that it’s going to do something bad for me. Maybe a little bit wary.
Sam was probing and trying to ask how i was in the car and it’s probably best that she was with me. I couldn’t – didn’t want to – cry in front of her. Yes, I wanted to be “strong” but whatever. It’s just best that I went in and got it done because now I can only go forward from here. I didn’t say much and felt super zoned out in the car.
I am curled in bed – 3 hours later – my head feels hot and I’m super tired. But I think I’m technically fine.
I am so grateful for my diet. I’m grateful that I feel as good as I do.
I did seriously talk with Sam yesterday about diet. She says its so hard. But her calprotectin just came back at 68 and it was 33 in January. Not a good trend. I don’t think it’s critical but we did stop at the store after and she bought sourdough bread instead of gluten.
I have an AI thread going where I want to email her – in writing so she can read it a few times – how studies how gluten affects psoriasis and inflammation.
We were watching G perform in the Senior One Act shows and chatting during the breaks and she said she would do anything to not have a bag again. So I may have to push on it a bit.
Le sigh.
I’m going to go find a show to mindlessly crash out on. Or finish my book. I was going to go to Cabaret with G to support YL kids but I’m tired. I’m done. It’s been a long day.
And I want to get rest to be upbeat for the exciting and amazing few days ahead of me!
