Jules medical fund

5/30/25

Top surgery went great! I’ve been healing for over two months. However a few things have happened on my medical journey:

I went as saw a specialist at Duke University and I now have an official diagnosis for hEDS. I have been in an awful flare for about a month. My body pain is through the roof, I haven’t been able to really keep any food in my body. I haven’t lost around 15 pounds. I had some testing done today and hope to get answers. Because I’ve been so sick money is once again very thin and not something I can bring in. I’m still waiting on a disability ruling.

I had my first PET scan since my cancer remission and everything looked pretty good with the exception of a 3mm nodule in the top lobe of my right lung. Right now it’s not calcified and something to keep an eye on.

I am sharing this again, mostly to cover my own persona monthly bills (car payment, therapy, credit card payments) and medical bills. (Yall these specialists are killing me)

9/25/24

UPDATE:

I got the biopsy from my parotid tumor yesterday. It came back as acinic cell carcinoma.

I had a meeting with my doctor this morning and it is cancerous. I go back into surgery next Monday and they’re going to reopen my site and dig deeper and take more tissue out to make sure they get all of the cancer. I’ve been very lucky that the lymph nodes around the site have all been clear, but they’re gonna have to go a little bit deeper into my neck and remove more lymph nodes. After that we depending on the biopsies radiation treatment may be in my future.

9/10/24

UPDATE:

Hello everyone, when I open this GoFundMe, I had every intention of using all the donations to go towards top surgery, however I wasn’t expecting to need two separate surgeries this year before my top surgery next year in March. I will let you know without the funds I have saved from here so far I would not be able to make any of this happen. I just didn’t feel honest calling at a top surgery fund when now it’s been going to cover other medical expenses, not just top surgery. Top surgery is still happening, but I have to take everything a step at a time. September 18th, I will be getting a parotid tumor removed and my port placed. I will be off of work for two weeks while I heal. Next after that I have a meeting with my top surgeon to map my port placement and get the green light from my primary provider.

Then I should be good to go the rest of the year until my top surgery in March (Knock on wood) as long as everything goes fine.

I get infusions weekly, I also see different specialists on the regular. Add in my normal doctor visits and any emergency room visits that end up coming my way and it’s just a lot. I’m not able to do as much dog walking as I used to so this fund has really been a savior for me. I just want to keep you all up-to-date and be very transparent about everything that’s going on. Thank you for any and all help. It takes a lot of burden off my husband and makes me feel less panicked and guilty about health stuff. I’m hanging in there. I’m going to continue to keep pushing through everything that comes my way.

Hey! I’m Jules/Lux, I’m a non binary person and I am finally running towards my dream of top surgery. I had a GoFundMe once before but unfortunately all that had to go towards a much needed hysterectomy about three years ago.

I’m in the process of setting up consultations and meeting with surgeons in my area. I looking for ones that has great results, takes insurance, and is close enough to home based so I don’t have to worry about funding a room. I’ve been wanting top surgery for a long time and as a non-binary person I’m so happy there are options for me.

I am working as much as I can with my current health issues (dysautonomia, hyper mobility, and possible lupus?) and it’s really hard to save once I cover monthly expenses, doctors visits, and meds. I know this will probably take me at least a year of not more to hit my goal but it would be a dream to be able to get surgery at the end of 2024.