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.