Unglued **trigger**

I called and thoroughly b*tched out both my CVS Caremark representative and CVS Specialty pharmacy (the people actually responsible for getting me my Humira). I was on hold for 40 minutes but I finally connected with the person who arranges payment and delivery, with overnight express shipping.

That night, Mr. MLACS flipped out on me for critiquing the way he was washing BG’s hair. He wouldn’t stop yelling and he said some hateful things–like basically I’m useless and need to STFU since he has to do SO MUCH more. If I could have divorced him right that instant I would have. He was despicable. Of course all this took place in front of our kid. Humiliating. I wanted to die.

Seriously, I wanted to die. I actually thought about it–that I am broken and ready to fly away. The Prednisone is really good at amplifying negative feelings.

He didn’t apologize. He kept telling me “What about what you did” but wouldn’t be specific (because I actually didn’t do or say anything mean to him. My offense was that I annoyed him). We went to bed mad, myself in tears.

We woke up and things were tense. He was smug and pretended to be chipper. That ate at me. We argued some more–I asked him to quit being mean. I was shaking. I went to do BG’s laundry.

And I came unglued.

I couldn’t stop shaking and crying. I ran to find my suitcases and I just started throwing things in them. At this time Mr. MLACS asked me “What’s wrong”, after he just finished telling me that he doesn’t care that I’m upset and that I deserve it and he’s not sorry. He came after me and I roared for him to stay the f*ck away from me. Every time he touched me I roared and pushed him away. Until I collapsed on the floor. BG didn’t see any of this but I know she heard.

The only person I hated more than Mr. MLACS was myself.

Mr. MLACS was clearly terrified. He had obviously thought he was playing some sort of game of wits with me. But no. I was so mentally and physically unstable at this point (day 12 of not eating, in pain, on corticosteroids), I had barely a shred of sanity to cling to.

And as I sat on the bedroom floor sobbing, I clung to that shred of sanity. But my dignity was non-existent. I wanted to die.

It hurts to write this. HURTS.

I was sobbing “Why couldn’t you just be nice to me? Why did you have to be so mean? I’m so weak. I have NOTHING left.” He had a look of remorse on his face, and he held me. That’s all I had wanted, for weeks–to be held and reassured. I wasn’t getting it from him. He was resentful. He felt like I was taking advantage of him by asking him to do his part and mine.

Why did I have to lose my mind before my husband could comprehend how I was struggling and show some compassion?

And then, the doorbell rang.

The Humira.

I was still shaking and freling like I was in the twilight zone.

But Mr. MLACS accepted the package and proceeded to open it and ask me what to do with the various parts. I received 6 Humira pens, and I needed 4 of them to come to room temperature so I could inject them. The others went in the fridge to be stored and used in 2 weeks.

I was nervously practicing with one of the practice pens the Humira nurse had provided–I had 2 practice pens, and BG had claimed them as toys. It makes me cringe (her playing with them).

Finally I decided to do it.

Mr. MLACS ushered BG away from the bathroom. And I pinched my skin, and pressed the trigger…

And it scared the sh*t out of me, I pulled the pen away from my skin, and the medicine ejected all over my bathroom.

Like, I should be the poster-child of what NOT to do with a Humira injection.

I was shocked.

I called out to Mr. MLACS and he and BG came running into the bathroom. I told him I needed him to do the injections. And take one of the pens out of the refrigerator to come to room temperature.

So he backed me up against the wall, pinched my stomach fat, took aim and fired…

It didn’t even hurt.

I looked over at BG though, and she lifted her shirt and used one of the practice pens to give herself a shot in her belly. She did it exactly right.

My heart broke into 1,000 pieces.

Mr. MLACS tried to reassure me that it’s no big deal to her. But it’s still sad and pathetic to me. Humiliating.

Mr. MLACS successfully administered the 3 remaining injections.

And we waited.

Oddly, I felt relief almost instantly. And over the next 24 hours my symptoms improved. I didn’t even need to take my Bentyl + Hydrocodone (for cramps/frequency) at all on Sunday. I had a couple blood-free toilet sessions.

But yeah, I knew it was too good to be true. My symptoms came flooding back in the wee hours of Monday morning. They are improved, but not to where I’d feel comfortable dropping my Prednisone dose.

I had emailed the b*tchy GI nurse and told her about the Humira. Told her I was on a liquid diet and had lost 13 lbs in 13 days. She’s all “Don’t expect too much, try to eat some solid food, try to drop from 60mgs Prednisone to 50mgs, yadda yadda”. Or, she said I can wait until my next Humira injections in 2 weeks, and then drop the Prednisone. I want SO badly to start weaning, but I can’t handle the cramps. They are so f*ing painful–debilitating. Like being in labor.

I told my Humira nurse that I f*cked up  my first injection (despite her thorough tutorial, practicing, and watching youtube videos). She was nice and have me a number to call for a replacement pen, and I called first thing Monday morning. Should be in the mail.

I have been lurking on online forums for Ulcerative Colitis, and I got some good info. I am concerned that I will flare when I try to drop the Prednisone. But I need to get off of it–it is the devil. So someone suggested adding an immunomodulator, such as 6MP or Imuran. I had heard of them but didn’t know anything about how they work. Turns out, they lower your white blood cells (thereby lowering inflammation) and could help quiet my immune system while I wean off Prednisone. They are also used to keep people from developing antibodies to Humira–once you have antibodies the medicine won’t work.

So I bypassed b*tchy GI nurse and sent a message to my GI doctor via the patient portal. I asked him if I should consider immunomodulators. I also asked that he give me another prescription for Hydrocodone, or refer me to a pain management specialist–I’m only taking 2 pills per day (5-325) and I split them in half to make 4 doses. So not a lot. But I can’t make it through the day/night without them. He’ll probably want me to make an appointment to discuss things, and that’s fine. But I wanted to write him so I might fully articulate myself.

Due to my medications, I’m hardly nursing BG. I’ve also been sleeping on the couch and letting her have the big bed to herself–works better for both of us because I don’t disrupt her, she doesn’t wake up and try to nurse at night, and the couch is pretty much the only place where I am comfortable. If I had my sh*t together I’d try putting her in her big girl bed. Due to my immune system being down, I have a cold sore, so I can’t kiss her. And I miss her. I miss feeling connected to my baby. I miss the cuddles and nursing. I feel horribly guilty for pushing her away right now.

I try to retain a sense of ‘normalcy’. I fed her a good breakfast. Got us both ready and took her to the little gym today. Fed her a good lunch (dinner I managed to cook last night). But I had laid down with her to nap, and I had to jump up and run to the toilet, which woke her up prematurely. And we were both grouchy. I let her watch 2 hours of Daniel Tiger until Mr. MLACS got home. I haven’t fixed dinner. I’ve just laid here on the couch with tears streaming down my face as I write this.

For the record, Mr. MLACS has been much more agreeable and now often asks me what he can do for me. I guess he just had to see how broken I am. Mostly I just want him to create space for me to focus on my needs. Not expect much or be disappointed. He is doing a great job being there for BG and the pets, and taking care of our affairs (getting things moving to rebuild the house) and all the mundane things–grocery shopping, dishes, laundry. I’d be completely lost without him.

I’m mostly lost.

XOXO,

MLACS

 

 

 

 

 

 

 

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23 thoughts on “Unglued **trigger**

  1. Oh my dear- this sounds all just so awful. I am sorry it took such a drastic moment to make the husband understand but we are all human and he is probably so stressed and overwhelmed he couldn’t see through it. I am glad he does now. Let me tell you that the fact you are still caring for your toddler and doing your best is all you should ask of yourself. I know the money stuff is hard but is a sitter for a few hours a day or week an option? Also- kids are so resilient. My miracle son has seen me inject so many fertility drugs and fall to the floor many times crying after a miscarriage and it has just made him sensitive and sweet and extra loving. Mostly I want to say I hope things get better and be kind to yourself until it does. Xo

  2. I continue to be amazed by your strength through all of your recent struggles! How you manage to do everything while so sick is simply amazing to me! I’m glad your husband is being more supportive! Sending my love.

  3. I hate that it took getting to that breaking point before your husband realized what he needed to be doing all along. Men can be so insensitive sometimes. I really wish things change for you soon. Sending hugs your way!

  4. My hubby is on Imuran (Azathioprine) and has been since 2001. Apart from two or three really bad episodes, where he’s needed to take steroids, it’s actually helping to keep the bulk of his Chron’s symptoms at bay. Or certainly manageable at least.
    I hope your GI Dr has some positive options for you when you hear back from him.
    As for your hubby 😔 I’m sure he’s feeling the pressure but I’m sorry your love cup had to get to empty, and practically broken, before he started refilling it again with acts of kindness.
    Take care of you as much as you can and be gentle with yourself x

      • Nothing! Not a single other drug! Since we moved from Scotland to Canada his GI Dr was a tad concerned that he’d been on it so long. Did a colonoscopy and liver scans and such and there are thankfully no ill effects of the extended use so he’s agreed to let him continue taking them. I know Chron’s has such a wide spectrum of sufferers so we feel lucky he’s keeping so well. x

      • Yeah he’s very very lucky! He still psuffers from plenty of cramps and food sensitivities and LOTS of time at the loo. But it’s more inconvenient than debilitating. Touch wood!!!

  5. I’ve had moments like that with my DH… it’s never fun and it sucks that it sometimes takes something so profound to wake people up to see the person hurting in front of them. I’m sorry. 😦 I’m sure he feels terrible at this point and I’m sure he didn’t realize he’d been so thoughtless.

    As far as taking shots in front of BG, I take my shots in front of my sons often. It has actually been a blessing when Tru has had to have blood draws done, that he has seen me experience these things so it doesn’t scare him as much. Levi just wants to give himself a shot in his “boob” (belly). 😉 It’ll be ok. BG won’t see you as being weak, but rather strong enough to take care of yourself by whatever means necessary. I know I remain quite impressed by your strength during all this pain!

  6. Oh friend. I have tears now too just knowing how all of this is compounding together – the UC, the pred, the humiliation from a self righteous spouse who felt put out by having to do all YOU usually do, the shame, the grief over your daughter witnessing and mimicking your injection procedure… all of it. I want the impossibleness of it all to stop but I know that’s a ways off yet. In my helplessness to change anything I nevertheless want you to know you’re in my thoughts and prayers every day and I *see*, hear and *get* you and how soul and spirit crushing (to say nothing of the complete physical debilitation) this all is. Sending so much love and tenderness.

  7. I’m sorry. That sounded like an awful fight and pity it had to come for that for Mr MLACS to understand better what you are going through. I hope this is the worst of your symptoms and that things will start getting better soon! x

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