Humira Approved!

The title pretty much says it all–my insurance company has approved my request for Humira! It’s only going to cost me $5 and Humira will pay my deductible so ALL my medications will be cheaper!

Yesterday was rough. I was house-bound with BG all day, and the only way I could keep from running to the toilet was to lay on my couch with my feet up. I felt bad for not playing with BG and letting her watch cartoons all day while I was on my cell phone researching, but mostly trying to distract myself from the waves of cramps and pain from my toileting. I’m quite sure that the fact that I was ovulating yesterday played a huge roll in my increase in symptoms. Oh the irony–I am finally mentally/emotionally ready to become pregnant again, but my UC is preventing me from trying. I’m a little bitter.

Months ago I had purchased tickets to see Daniel Tiger–paid almost $300 for front row seats–and the performance was last night. I was not sure I’d be able make it, and that was stressing me out. My BG is completely obsessed with Daniel Tiger and I was dying to see her face when she spotted him on stage, live and in color.

Luckily, my last dose of Prednisone/Vicodin/Bentyl worked (it f*cked me up, but it worked) and I was able to get myself dressed and put on a bit of make-up while Mr. MLACS fed BG dinner and gathered our things (snacks–when you have a toddler you have to be in possession of snacks at ALL times).

We arrived and Mr. MLACS went straight to the souvenir stand and purchased a Daniel Tiger hoodie and a poster for BG–good thing because they were going to sell out. We found our seats and could hardly believe how close we were to the stage. BG was completely awe-struck upon realizing that Daniel Tiger and friends were within arms reach! She sat on my lap and I bounced her and sang every word to every song. Sometimes she looked entranced but then she’d snap out of it, turning to me and Mr. MLACS, she’d smile and giggle with delight ❤

Afterwards, we got to meet-and-greet Daniel Tiger. My kid is a real “fan girl” and raged when we wouldn’t let her cut the line and rush up to him.

She slept in her DT hoodie and has worn it all day, even though it’s 80 degrees outside. I’m not arguing with her today but I forsee many battles re: the DT hoodie in the near future.

I can’t believe I made it without having to go to the bathroom until we arrived home–a real miracle. I even managed to retain my enema for several hours after I went to bed (which has been impossible lately, but it really helps).

But I woke up at 5am this morning  doubled over with cramps and hobbling to the cabinet to get my pills. Luckily BG slept in until 8am, and by that time I was functioning and had her breakfast ready for her.

I’m not so sure about Apriso. At the beginning of this flare I switched from Pentasa to Apriso, and I think some of my symptoms are worse because of it. The Apriso is targeted to the lower colon (proctosigmoid) where I show inflammation (confirmed by 4 colonoscopies). But I’m having painful gas and bloating much higher up. So then, maybe I need a medication that covers the whole colon in order to keep the disease in-check.

So I called my GI nurse and she called me back on my way to take BG to a playdate at the park. GI Nurse was annoyed that I had called and clearly did not want to discuss anything with me. She actually said “I have a hundred patients and I can’t talk to you every day”. I get it, but I was still offended. I told her the truth, “My last GI nurse wanted me to check in with her all the time, at every step. But I get that this situation is different. That’s fine.” Then she backtracked and was like “Oh you can always call me if you have a question or need something”, which is redundant because WHY the f*ck else would I call her?! We’re not friends.

I told her I don’t like calling and I’d rather just email her anyway, that way she can get back to me at her convenience and I’m not waiting for the phone to ring–my last (awesome, magnificent, rainbow-unicorn) GI nurse and I emailed constantly. The current GI nurse sounded relieved and said I should use my patient portal account (which I had not received an invitation to). Why didn’t SHE think of that *before* lecturing me about calling?! I’m not impressed.

Then about an hour later she messaged me through the patient portal that my Humira was approved! Woohoo!

I called my insurance and they said they are just waiting on a prescription from my doctor, and said it would be quicker if it was called in as opposed to faxing it. I messaged GI nurse to thank her for her time and attention and to pass along the number she could call the script into.

If GI nurse sends my prescription today, then my hope is that I can receive it tomorrow (rush delivery) and have the Humira nurse come and administer my loading dose on Friday.

F*ck I hope this works.

If I end up needing a colectomy, the best surgeons are at least 5 hours drive, but there’s some good ones 1.5hr drive. I’m already researching surgeons. I want to be prepared.

XOXO,

MLACS

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10 thoughts on “Humira Approved!

  1. Woo hoo – glad you got approved for the medicine and it’s cheap! I’m sorry about your nurse being disrespectful about you calling – she totally should have given you the link to be able to communicate online. My health care system has the online patient database as well and I am loving it. So glad you were able to go to Daniel Tiger. I have literally no idea what that is by the way lol. XOXO

    • Daniel Tiger is the new, animated, Mr. Rogers Neighborhood. You can see it on PBS channel or check it out on youtube, etc. It’s pretty cool as far as cartoons go–helps toddlers learn how to build relationships and deal with emotions. BG would watch it on loop all day long if I let her (and I’m ashamed to say, I do from time to time). Thanks for all your support lady, I appreciate you ❤ XOXO

      • How fun – I’ll have to check that out when my nephew is over. Girl – don’t be ashamed. You are a chronic illness warrior and there’s no shame in making life a little easier to manage things from time to time. XOXO

  2. Finally some better news. So glad to read it was approved, and so t be expensive! I hope it helps alleviate these terrible symptoms. You deserve some relief, finally.
    And this nurse sounds rude, I’m glad you are able to virtually deal with her now. She should get over herself!!!

    • Thank you! See I don’t think she was rude, I think she genuinely struggles to handle her case load and most of that is lack of efficiency on her part. After the 1st or 2nd time we played phone tag, she should have said “A better way to communicate with me is through the patient portal”. Which is actually more efficient because I can thoroughly articulate myself in writing but not so much over the phone–phones waste time. My former GI nurse probably has 3x the amount of patients that current nurse has, but she’s a gottam genius and makes it look easy. XOXO

  3. We are HUGE DT fans over here too! Nobody can sneeze in their earshot without a proclamation of “Owl is Sick” from the twins 😂
    So sorry you’re struggling. My hubby has Chron’s so I sympathise hugely at how utterly debilitating a flare up can be. I know it’s hard but remember … “When you’re sick, rest is best. Rest is best!”
    I hope Humira is all the good things I’ve read about it and more! Take care!

    • 😂You just made my day with the DT “rest is best” song! Currently watching DT in order to bribe BG to eat dinner.
      I feel for your husband–Crohn’s can be so much worse than UC. Best wishes to him and your family ❤ XOXO

    • Hey! I’m better. I’ve figured out when/how much medicines to take to get the max coverage and keep my symptoms in-check. The inflammation (in my rectum) has gone down so it doesn’t hurt so bad when I do have to make a run for the toilet. I feel calmer and stronger. I’ve started to eat a bit of solid food (like hummus) and tonight I made whole roasted chicken and potatoes and I just couldn’t resist and made myself a little plate–we’ll see how it goes.

      Talked to my old (ah-maz-ing) GI Nurse today and she encouraged me that the Humira should be good for me. Talked to my insurance, and it looks like the soonest I could receive my drugs would be Tuesday. That’s f*ing disappointing, because the longer I stay at 60mgs Pred, the harder it will be to wean. Plus I’m not a patient person, like, at all 😜 But we’re moving in the right direction. I made a real dinner! I took BG to her Little Gym class. I played with her and the dog outside for a bit. I’m grateful. ❤ Much love, thanks for being there ❤

      • Tuesday is disappointing indeed. I’m so relieved you’ve gotten on top of the immediate crisis. I hear you on impatience. I think that might be my middle name. Here’s hoping the chicken and potatoes do no harm. Much love and resilience back at you dear friend.

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