Alyssa Nicole

Things have been crazy lately health wise, and the last two days weren’t an exception. There was some miscommunication between CHOC radiology and the clinic for brixton’s MRI clearance, which lead us to having to wait close to 3 hours in the emergency room to get him cleared for the next morning, (otherwise, it would have been cancelled, and we couldn’t do that since I’m having surgery next week), so fingers crossed that we didn’t catch something there! Yesterday morning, brix was put under anesthesia and had an MRI on his brain and brain stem to compare with his last abnormal MRI, and see what exactly is going on. Brix wasn’t happy about it, but handled it like a champ, and we are so proud of him ❤️🐻 #toughasbrix #choc #chocchildrens #mri #neurology #radiology #mybaby #soproud #brixtonzackery (at CHOC Children's) https://www.instagram.com/p/B8AbfQPjPEo/?igshid=4jyq8e2p58md

Happy birthday to my best friend 🎈 I’m so thankful I get to spend yet another year of your life with you. Thank you for being such an amazing dad to brix and fiancé to me ❤️ #happybirthday #birthdayboy #weloveyou #newmanboys #brixtonzackery #thankful https://www.instagram.com/p/B4v0vjBDEwq/?igshid=ourgbj9ie0jy

Today, we had to say goodbye to the most loyal and loving dog, after 16 amazing years together. Tashi was there for me when I got sick and spent most of my time at home by myself, but he always made sure I was never alone; he would continuously stay up with me and would always ask to share my mochi by sneezing at me until I got the point. He was my first baby and my best friend. I can’t even put into words what he meant to me and my family, and I know he will never be forgotten. We all love you so much Tashi, thank you for bringing so much light into all of our lives ❤️🐼 #Tashi #tashibear #messypanda #moochi #bestdogever #missyoualready #loveyou #foreverandalways (at Fullerton, California) https://www.instagram.com/p/B4mCiG5DKIC/?igshid=16dsflhmnkf3a

I wasn’t going to post this, because my latest ER experience has really effected my mental health and outlook on the medical community, but I just recurved an email from the hospital asking to fill out a survey. Where to begin... well, my next surgery couldn’t be scheduled until February 6th, so my surgeon told me that if my abdominal pain was bad and I still couldn’t eat, to go to the emergency room and have them page him; simple enough, right? So wrong. I’ve had a lot of negative experiences, but this Doctor made me feel less of a person. After giving me IV meds that I did not ask for, he let me know that all of my pain is in my head. Diagnosed bilateral inguinal hernias, Ehlers Danlos, endometriosis, and recent surgery? Not real. Any meds I’m on are causing me to believe I’m in pain, even though I’m not. During this conversation, I’m in tears, attempting to stand up for myself, and Brett standing up for me, but the Doctor continued to talk down to me... and to top it all off, he refused to page my surgeon. It’s amazing to me that so many people, especially women, aren’t believed. It makes me sick. I thought after being diagnosed, I wouldn’t have to explain myself anymore but I really don’t even know how to explain the mental state I’ve been left in after this. Just because an illness is invisible on the outside, doesn’t mean they aren’t real. #invisibleillness #chronicillness #chronicpain #womenshealth #believewomen #pelvicpain #abdominalpain #endo #endometriosis #eds #ehlerdanlos #sickgirlsclub #hospitalglam #fightlikeagirl Also, shout out to Brett for always having my back and keeping Brix happy with this hospital adventure ❤️ #myboys #brixtonzackery (at Fountain Valley Regional Hospital) https://www.instagram.com/p/B3-u26sDbra/?igshid=huqe9f6m9bc

This post is long, so I’m sorry in advance 🤙🏼 I know I’ve been MIA lately, but I promise it’s been for ‘good’ reason. I really thought the surgery I had in July would be my last and I could embark on a new and pain free life... but of course, that’s not the case. Luckily, my two main pain spots in my pelvis have significantly diminished and get better everyday!! However, since my surgery (bilateral inguinal hernia repair), I’ve been dealing with a new type of pain that I originally thought was post-op pain, but has only gotten worse every day. I can barely eat without excruciating and stinging abdominal pain, that also gets worse with anything that has to do with my gastrointestinal tract. Well, I finally saw my surgeon and he believes that I have a bowel obstruction, and that my small intestine and rectum have adhered, possibly from scar tissue and/or endometriosis. Soooo, you know what that means... ANOTHER SURGERY 🙄💉 My surgeon is trying to push my insurance approval faster, so I can get this surgery ASAP. Please keep me in your prayers/thoughts/good vibes, because this is the first surgery that has actually made me nervous, just because we don’t know what to expect, and the Ehlers Danlos causes me to heal slowly. Life is crazy when you’re an A-typical patient 🤦🏻‍♀️💊 #anotherday #anotherissue #chronicillness #chronicpain #pelvicpain #abdominalpain #invisibleillness #surgery #number5 #herniarepair #bilateralhernias #inguinalhernia #pfd #ehlersdanlos #eds #ehlersdanlosgrrrls #endo #endometriosis #sickgirlsclub #spoonie #spooniemom #fightlikeagirl #roadtorecovery #letsdothis #again (at Fountain Valley Regional Hospital) https://www.instagram.com/p/B3XmX1PDFrU/?igshid=7exx6blb1tay

Life has been crazy. It’s definitely different healing from this surgery, since my pain has significantly gotten better, but now also dealing with other ailments that I’m not used to. Every time I feel pain, I immediately get scared that my 9+ pain is coming back or that the hernia mesh has failed. I’ve been letting that fear really take hold of my emotions and I’ve just recently noticed it. I’m now trying my best to break out of this fear and enjoy this new life. @brett_fackcancer took us on an amazing vacation in San Diego this past weekend (expect lots of pictures) and for the first time, I was able to keep up and actually have fun! So, I’m sorry if I’ve been MIA lately, but I’m going to try my best to get back into the swing of things 💛 #happiness #fear #fearless #twloha #chronicillness #chronicpain #pelvicpain #hernia #herniarepair #invisibleillness #fightlikeagirl #sickgirlsclub #spoonie #spooniemom #myloves #fiance #brixtonzackery (at Fullerton, California) https://www.instagram.com/p/B1xK0EID3V-/?igshid=qhmlyj77dowh

It’s taken some time, but I finally feel like I’m starting to heal 🦓🥄 Today was my first real outing since surgery, and it was so worth it! I don’t know what I did to get so lucky; Brix and I are so happy to have her home 🥰 #healing #recovery #eds #ehlersdanlos #ehlersdanlosgrrrls #inguinalhernia #endo #pfd #chronicillness #chronicpain #invisibleillness #spoonie #spooniemom #myloves #bestfriends #bridesmaid #auntiedani #brixtonzackery #lucky #blessed (at Dripp - Fullerton) https://www.instagram.com/p/B0SWvjdDfJt/?igshid=1nyke95w7yo41

For the first time since I got sick 9 years ago, I can say that I’m cautiously optimistic. I had my surgery on Tuesday, and my surgeons found bilateral inguinal hernias exactly where my pelvic pain spots were. I have always been able to point specifically where my pain was and it always baffled the countless doctors and specialists I have seen, but now it makes sense. It blows my mind that it took 9 years and it wasn’t until my momma did her own research and pushed for these rare hernias to be looked into. The surgery was the most painful experience I’ve ever had, (including my C-section), and recovery has been no joke, with them having to open me up with a record 6 different incision sites and implanted mesh!! 💉 However, for the first time, my surface pain has started to decrease and ibuprofen is actually able to help. I have my post-op appointment on the 24th, where I’ll learn everything that they found in much better detail and where to go from here. I know my road to recovery is a long one, but compared to the 9 hopeless years, it’s a road I’m cautiously optimistic to be on 💛🦓 #roadtorecovery #inguinalhernia #bilateralinguinalhernia #bilateralhernia #surgery #mesh #laparascopy #drtamle #ehlersdanlos #ehlersdanlosgrrrls #eds #endo #pfd #pelvicpain #womenshealth #chronicillness #chronicpain #mysterdiagnosis #hospitalglam #fightlikeagirl #spoonie #spooniemom #lightofmylife #brixtonzackery And an extra special thank you to my amazing momma and sister for helping me with brix when I’ve been too weak; to Brett for working so hard and then coming home and helping me in any way he can; and to my friends like Weber and Meghan for continuously checking in on me... you all have no idea how much it means to me to have such a loving and strong support system 🥰 (at Fountain Valley Regional Hospital) https://www.instagram.com/p/Bz6GT5hD_nn/?igshid=kdaqba9jh1jw

This picture is a pretty accurate depiction of how I’ve been feeling. Even though I’ve had some amazing experiences lately with my favorite dudes, I’ve been feeling too down to post. Since my last Endo surgery a couple months ago, I’ve been in significantly more pain, to the point that it’s been difficult to even get through some days. I was so hoping that this surgery would help, and was devastated when it did the opposite. However, I was referred to a general surgeon who took on my case, was actually interested in my story, and decided to take on my case. After reviewing my surgery reports, he thinks my peritoneal defects might actually be incredibly small inguinal hernias. Apparently, the smallest the hernia, the more pain in caused, the peritoneal walls can get more and more damaged with each surgery (I’m up to 4), AND happens frequently with EDS patients! I have been to every gynecologic specialist in the Southern California, so how this has never been looked into, I have no idea. But a cancellation was made, and I got the spot... so I get this next surgery on Tuesday!! I’m hopeful, but that terrifies me even more. Prayers, love, light, and/or good vibes are greatly appreciated!! ❤️💉🦓 #letsdothis #inguinalhernia #eds #ehlersdanlos #ehlersdanlosgrrrls #pelvicpain #endo #pfd #pelvicfloordysfunction #chronicpain #chronicillness #chronicpain #mysterydiagnosis #undiagnosed #invisibleillness ##fightlikeagirl #mylittledude #lightofmylife #brixtonzackery (at Fullerton, California) https://www.instagram.com/p/BzoGqfBjvno/?igshid=1ee4burlhpu1l

There are women struggling everyday, but that pain can be significantly worse on Mother’s Day. Please remember to be sensitive, and reach out to those who may be having a hard time tomorrow, no matter the circumstance. Happy (almost) Mother’s Day 💐 #mothersday #infertility #childloss #grief #awareness #standtogether #lightandlove (at Fullerton, California) https://www.instagram.com/p/BxWk7e0jI-U/?utm_source=ig_tumblr_share&igshid=1sr6veffv4vnp

Well, at least the paper gowns at the specialist’s office almost resemble a dress 🤦🏻‍♀️ I’ve been inside my own head so much the past couple months, which paired with google can be a dangerous thing. Basically, I’m going in for my next surgery on the 24th. After reviewing the pictures from my last surgery, my doctor believes he sees missed Endometriosis and misdiagnosed ‘holes that are nothing to worry about’, that are actually Allen-Masters Windows. Therefore, I’m getting a laparoscopic excision surgery and going from there. However, he does want to start me on Lupron afterwards to give my body time to heal... terrifying, especially since I already Ehlers-Danlos. So, if anyone has any first hand experience with the Lupron side effects, please let me know, so I can make the most informed decision possible. I feel so blessed to be surrounded by support in my real life and in the chronic illness communities online 🎗🥄🦓 Also, with all this health stuff going on, I’ve been neglecting to focus on all of the positives in my life, so I’m going to try my best not to do that anymore, aka expect lots of pictures uploaded of the happy things that have been happening 💛 #update #chronicillness #chronicpain #invisibleillness #lupron #endo #endometriosis #ehlersdanlos #eds #ehlersdanlosgrrrls #allenmasters #ams #undiagnosed #mysterydiagnosis #excision #sickpeopleproblems #sickgirlsclub #sickgirlswag #fightlikeagirl (at Fullerton, California) https://www.instagram.com/p/BwL98sYjHm9/?utm_source=ig_tumblr_share&igshid=6538a1zi1ku6

Happy birthday to our little guy ❤️ This past year of your smiles and attitude have made our hearts so full 🥰 #happybirthday #birthdayboy #2yearsold #buildabear #gopats #mybaby #noway #brixtonzackery (at Fullerton, California) https://www.instagram.com/p/BvDEkdOjYvi/?utm_source=ig_tumblr_share&igshid=1fnf7oa4wxsqw