Help with Camille’s Surgery Expenses!

I’ve admittedly kept my health issues over the past year and a half pretty private on social media, but there’s been a big step in my journey that I’m too excited to not share. Over the past 18 months or so I’ve been diagnosed with POTS, hEDS, MCAS, PCOS, gastrointestinal issues, and other chronic illnesses that have impacted my day to day life after a 8+ year long process of countless ER trips and doctor’s appointments trying to get some sort of answers and validation as to why my health was declining. I don’t like being the center of attention (and even more so- I don’t like feeling like people think I’m trying to bring attention to myself) so this was something I kept to my close friends and family.

Thankfully, I was finally able to find a good team of doctors and specialists that took my issues seriously and actually knew what the hell they were talking about, lol. Last year was the first time doctors hadn’t just looked at my “normal” lab results and dismissed my concerns as anxiety, growing pains, weight-related, or (of course) my period.

Most recently, I met with a surgeon in Connecticut who specializes in MALS. MALS is short for Median Acruate Ligament Syndrome, which is a rare condition in which people are born with their diaphragm too low, which causes the median acruate ligament to form a vascular compression on their celiac artery. The celiac artery provides blood flow to my digestive system, and is encased in nerves that lead to that part of my body as well. This was causing worsening, severe pain when eating, drinking, exercising, or breathing over the past 10 years that was making me vomit and really just not want to eat at all, leading to rapid weight loss.

After a positive CT scan and ultrasound earlier for MALS this year, the team at Stamford Hospital performed a Celiac Plexus Nerve Block, in which they numb the nerves on my celiac artery for 4-6 hours and see if that’s what’s causing my pain to ensure we’re not just doing surgery for no reason. I have not experienced that level of relief and pain-free eating/drinking/etc in years. It was a very emotional experience to say the least, lol. After discussing the results with the surgeon, we decided to move forward with surgery sometime early 2024.

All in all, I just wanted to extend a huge thank you to my family, boyfriend, and close friends who have been so incredibly supportive and patient with me through all of this, even on my bad days when I get overwhelmed and fed up with it all. I appreciate all of the love and kindness everyone has shown me over the last year or so while trying to figure this out. If you’re having health issues right now and feeling like your doctors aren’t taking you seriously, FIND NEW DOCTORS WHO WILL LISTEN!!!!

After experiencing that level of relief from the block, I’m so excited and over the moon to see what the future holds after surgery. The “MALS Pals” in my support groups call it Life 2.0, which I feel like really is the most accurate description.

I’ve had a few people say they would like to support me financially with medical/travel expenses and I truly cannot express how grateful I am that people are so thoughtful, generous, and considerate enough to want to do that. Like I said earlier, I do NOT like bringing attention to myself and asking for help, so this is all very new to me. After lots of debate, I’ve decided to start a GoFundMe for medical expenses. If you’d like to donate, I just want to say how much any bit of your support or prayer/thought/encouragement means to me. Thank you to all the wonderful people in my life, and here’s to Life 2.0!!!!