Finally feeling human again and the bitterness trap. | #crohnsdisease
209
Published 2021-08-07
After months of battling my insurance company for monthly Remicade infusions they caved and I began monthly infusions in June 2021! Which is such exciting news!
In March of 2020, after 6 months to a year of pain and misdiagnosis I was properly diagnosed with complex perianal Crohn's disease. This was the result of two anal fistulas. One year ago I went into the infusion center for my first Remicade (infliximab) treatment. I credit that drug with helping me get closer and closer to remission.
CHAPTERS
00:00 - Intro
00:15 - Is This What It Feels Like To be Human?
00:28 - My Crohn's Journey Abridged Version
01:06 - Current Mental Health Frustrations
03:00 - Weird Time To Be Immunocompromised
03:27 - Forgotten What Living WITHOUT Pain Is Like
05:05 - TMI About Anal Fistula Drainage
07:40 - Bitterness Over Health Insurance Battles
10:01 - Outro
Expect videos in this series on the surgeries I've had, my experience with colonoscopies, MRIs, going to battle with insurance over Remicade infusions, and my experiences with immunosuppressants and other treatments.
My Crohn's Disease story here:
• Let's talk anal fistulas | Complex pe...
The video this is an update on:
• How bad is a bad day w/ Crohn's | #Cr...
My Medical Team:
Primary Care Doctor
Dr. David J. Prelutsky, MD, FACP, AAHIVS
southamptonhealthcare.com/
Colorectal Surgeon
Dr. Radhika Smith, MD
wuphysicians.wustl.edu/for-patients/featured-physi…
Gastroenterology Doctor
Dr. Parakkal Deepak, MBBS, MS
wuphysicians.wustl.edu/for-patients/find-a-physici…
Additional Crohn's Resources:
Crohn's and Colitis Foundation
www.crohnscolitisfoundation.org/
American College of Gastroenterology
gi.org/
#crohns #crohnswarrior #disabilitypride #chronicillnesslife
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Good causes:
Equality Federation:
www.equalityfederation.org/
It Gets Better:
itgetsbetter.org/
Gill Foundation:
gillfoundation.org/
The Trevor Project:
www.thetrevorproject.org/
National Queer and Trans Therapists of Color Network:
www.nqttcn.com/
GLSEN:
www.glsen.org/
Black Lives Matter:
blacklivesmatter.com/
The Conscious Kid:
www.theconsciouskid.org/
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All Comments (14)
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Mental health is a struggle for people with chronic illness, disability, temporary post-accident recovery... This is tough, but it will teach you strength and resilience, my friend. The journal is so good. I have it on the phone because I do it all digital. You're doing it right. You're taking steps in the right direction. So glad to hear your happiness when you talk about not feeling pain anymore. I'm hoping for a day when I hear Mom say that she doesn't feel any pain. I'm very happy for you! 💜
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Pause! You're from Missouri?! I'm from Kansas! We're writers, crohnies AND neighbors! Lol!
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4.26 gave me a rush. Someday I will wake up pain free. Glad you have crossed the bridge
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Well that is fantastic to hear! Hopefully this is a new norm for you and you really can return to some kind of normalcy (if the rest of the world decides to join us one day 🤦♀️). A whole year. I can't even imagine...
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Don't worry about the TMI. It is what it is, and it's part of the situation. Im learning a lot about this condition thanks to your vlogs.
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Okay when you were talking about waking up without pain and how WIERD it was. OMG. I literally feel disoriented when that happens to me. And almost...high? Like I'm so happy my whole body is nothing but dopamine lol Glad to know I'm not alone. And so happy you are seeing some improvement! <3
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Glad to hear you're feeling better, you've had a hell of a go of things, and to finally find that sweet spot is such a relief, I was the same when Mepo was finally approved for use here and then the wait for the call to get my first dose.
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Not the same at all, but kinda, sorta. Just now I can resume my paperwork to maybe soon get a disability certificate to get some small benefits, discounts, and law protection so I can get some kinda job somewhere. I moved here in November 2019, lost my job in March 2020 because pandemic took all the travelling jobs away, and everything was shut down so no disability certificate either, so no new job, so a lot of problems. It's been rough and depressing, but I rarely mention it in my writer platforms. Conclusion, in my different way, I relate to that feeling of "this could have been sooner." You're not alone, friend.
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So this is all new to me. Apparently the doctors believe I am in the early stages of crohn's... I've been getting the fistulas and even have cetons in.... two.... at the 9 and 3.... I am having I guess what you call a bad day and I can't see how you or anyone with this can go on. I've been out of work for about a month and I am due to go back this Tuesday. I don't think I can do it. They bother me at every step, sitting is definitely not an option and I am tired of just having to lay down.... this whole thing has not been easy at all.... I have my wife to talk to but it is nice to also see you on here as well. I don't even know why I am even commenting on here. Maybe I just want it all to go away and maybe just talking about it helps.... I don't know. Thanks for giving me hope though. I am definitely having one of these bad days lol
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Hey bb—so so happy you are feeling better! Sorry it took so long due to money. Which yeah, I would be pretty angry too. I’m thankful my buddy is feeling better. Now we have to deal with the pandemic in our state, it’s keeping me in as well. Plus they keep going back and forth in wearing a mask or don’t wear a mask in STL. I just don’t want to deal with all that so been staying in more, plus it’s hot. Humidity is not my friend right now. Yay for you feeling like yourself again! That gives hope to many others
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Wow thank you fur staring this. It’s crazy the implications we don’t cubsyder with regards ti baccunes and the pandemic. It sounds like desire the wait you’re on the trail get path to getting better. Is there a cure for it or just treat the dtmitimd
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Remicade is magical! I've been in remission for 5 almost 6 years thanks to Remicade! Edit: Yes, I am commenting as I watch lol. Omg, insurance is so aggravating! I hate it. I had to switch to a biosimilar for Remicade this year instead of the original Remicade and I'm terrified it'll mess up my remission. All because insurance wouldn't pay for Remicade. GRR!
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I wonder do you still have the same views on who's jabbed and who's not
