End Endometriosis for Rachel- #YouCaringGives

For: Rachel Heberling
Easton, PA
Organizer: Rachel Heberling
$15,560
of $20,000 goal.
Raised by 64 donors
77% Complete
This fundraiser is closed. Thank you for your support!

The Story

I have endometriosis: a debilitating and painful disease that affects 1 in 10 women.

What is endometriosis? Tissue similar to what lines the uterus finds its way elsewhere in the body, forming lesions and scar tissue that can bind organs together. This can cause serious complications, including a need for bowel resection or catheterization. It also causes severe monthly or daily pain. This isn’t a minor ache or a case of “bad cramps”. This is gut-wrenching, knife-stabbing, gripping the toilet in a cold sweat pain. This is passing-out from pain. Muscle relaxers and heavy narcotics barely touch the pain.

What’s even worse is that it takes an average of 7-10 years to get diagnosed, due to the stigma of a ‘woman’s disease’ and a lack of education. I’ve been suffering the worst of the pain for the past 7 years. Doctors told me I could not have endo, even though it’s genetic and runs in the family. After years of failed hormonal treatment attempts, I finally got an official diagnosis in December 2015.  This was via exploratory laparoscopy, since the only way to get a diagnosis is to surgically go in and look. Upon waking I was told that I had Stage II endo that pulled down my colon, but that the disease was removed and all was put back in place. I had great hope that I would be pain-free. The first month went by and I felt terrible. Then the next month, and the next the pain got increasingly worse. After much research, I found out that my doctor used cauterization to burn off the disease. This is not good (and what most Ob/Gyns do). It’s akin to weed whacking poison ivy: this stuff has roots and grows back with a vengeance. I was worse off than I’d ever been. Furious and struggling to pay off medical bills, I searched everywhere for an answer.

The only proper treatment is excision: cutting out the tissue by the roots and painstakingly removing it from every organ. This takes hours and can only be done by the most highly-skilled surgeons; there are only a few in the country. I found the Center for Endometriosis Care in Atlanta, GA, where patients fly from all over the world to have surgery. After getting an immediate response from my application, I put in motion all plans to have the procedure. The most difficult part is that health insurance does not understand the time needed to properly treat the disease. Therefore, most all excision specialists are out-of-network, making the operation much more expensive.

My surgery will happen on October 11th. I am flying down on the 9th for prep, plus several days of recovery in Atlanta afterwards. I will also be off work for at least 8 weeks.

I need help with travel expenses (my dear boyfriend John will be my caretaker), and lodging. The biggest expense will be the out-of-network physicians fees, but luckily the hospital fees are in-network. My donation goal estimates the total for all these expenses (which could increase, and I will update accordingly).

For more information on the Center for Endo Care (CEC) and the disease, please see: http://centerforendo.com/lapex-laparoscopic-excision-of-endometriosis/ Other resources include: http://www.endofound.org/ and Endowhat, a great documentary: http://www.endowhat.com/

If you are unable to contribute to this campaign, please pass it along to educate others. The biggest problem is misinformation. We can no longer be quiet about endometriosis. We must stand up and battle because we deserve a life without constant pain.

Fundraiser Updates

Posted on May 26, 2017

Posted on May 26, 2017

The doctor doesn't want to see me anymore!!! And that's a GOOD thing :D I have extra super news. After writing to my supporters the other week that my insurance miraculously covered the rest of the out-of-network costs (so I wouldn't need to spend anything additionally to what we raised) I started sending out 'thank you' prints (yours will be on the way soon if you haven't received one yet!) AND I had another miracle! Just a few days ago, I had my first cycle post-Mirena. This was after almost 2 months sans pain meds or any kind of prescription, 1 1/2 months into the strict anti-inflammatory diet (no dairy, no sugar, no gluten, no soy) and nutritional supplements, and 1 month into really upping the cardio exercise. Well guess what? This was the first cycle in 8 YEARS that I haven't broken out the pain meds. Hallelujah! Not even a damned Tylenol! (And it happened to land right in the middle of doing a juice cleanse day with my best friend, haha). Now I was in a good amount of pain, but it didn't ratchet up to the ole level of bringing me to my knees in the bathroom for a couple days. I managed with herbal remedies, heating pads, yoga, meditation- being mindful and taking it easy. So the doc done declared me cured. Well, at least I know how to manage.
Ladies and gents, that is the best news I could ever ask for. And with that- my fundraiser is closed. Lots of love!

Posted on April 14, 2017

Posted on April 14, 2017

Dear supporters, I wanted to send you a POSITIVE update! Yes, times get tough and I really did have a meltdown the other week, but sometimes you have to break down to BUILD UP. The ear surgery went really well on Friday and I was already back to work Monday. During that time I started a strict anti-inflammatory diet and new supplement protocol after consulting with a nutritionist. I think it's really helping me recover faster, detox from the anesthesia, use less pain meds and get a bit more energy back. And then all these wonderful things happened! I got another donation from a dear friend, I won 2nd place at the Artworks Trenton Print Exhibit (and I almost didn't get my work to the show since I was having such a rough time- thank goodness for the boyfriend helping out), AND, today was the most wonderful of all- I got to do a talk at Kutztown University for Big Art Day. This is a fantastic program that's been going on for 10 years, where they have funds each year to bring back 3 alumni in the art program (can be fine art, art ed, graphic design, etc) to talk to all the current students (and other visiting alumni) about their career path. I couldn't believe I was chosen! And it was such a validating experience when I needed it most. As I sat down and prepped my slides for the past couple weeks, I couldn't believe all the places I've been, people I've met and things I've done to make a career in the arts in the face of all sorts of odds. It's been a wild ride for sure, and I have many of you to thank for being a part of that journey. So THANK YOU!
I'll keep everyone posted as I have more appointments in the next few weeks. Thanks again for sticking with me and your continued, unwavering support.
Much love,

Posted on March 26, 2017

Posted on March 26, 2017

This is going to be one very long update! First, yesterday was Worldwide Endo March day, and I was thrilled to walk in solidarity with my sisters #Endolove in Washington's Crossing, PA at Revolutionary Health Services. Organized by several lovely ladies, another made us T-shirts, and I hand-screen printed posters that I gave out (see in pic below). I couldn't have been more pleased with how well-received everything was and it's empowering to meet with fellow-sufferers of endo. We are always there for one another.

It's been a very rough few months. I had the Mirena placed in early January to help with some severe pain symptoms I was still suffering 3 months out from surgery. I wanted to be sure to be able to get back to work at my intense job with a long commute. At this point I am the last staff person remaining at our dear non-profit art org, The Printmaking Center of NJ, and don't know what I'd do without volunteers. Sad to say, this implant hasn't been agreeing with me. In mid-February all the lymph nodes in my groin started swelling and becoming very sore. By March 2nd, after several frantic doc visits and an ultrasound, I ended up in the ER. I had a large ovarian cyst develop, bigger than an orange, and when I suddenly started shaking, sweating and passing out, that's when dad took me to the hospital. It had gotten large enough to distend my abdomen to the point that I couldn't wear anything with a waistband or a seatbelt and it felt difficult to breathe (I've gotten pretty tiny, so I big orange in there really squashes things around). Then it suddenly went down, as it had seemed to rupture (or at least leak). Oddly the ER ultrasound revealed that it was still there, and bigger than ever. They took 5 hours to finally get me one Percocet (after repeated promises and a Tylenol offer at first- ha, hahaha, very funny!) then sent me home. What was really disturbing was that they could not tell me whether it was hemorrhagic or just fluid (aka was I bleeding internally or not). Hmm, looked like it in the first scan but not sure in this one- could just be the diagnostic equipment. Cool! What a comforting response. Luckily my abdomen has gone down throughout the month but my pain is still the same. I feel like a walking voodoo doll stabbed with straight pins and knives at any random point during the day, besides a constant white noise of dull pain. Needless to say, it's debilitatingly exhausting. I barely make it through work and every evening is for keeling over. And weekends are for as much rest as I can possibly get. In the meantime, I've been given a regimen of even MORE hormones- a double dose of fake progestin pills on top of what's similarly being released by the Mirena- this is to prevent future cysts from forming, but it's making me super irritable and cranky/crazy and started causing total insomnia. I need that, right? Two weeks ago I also got deep, internal lidocaine/steroid injections with 2 foot needles (I kid you not) and a Valium compound that, ahem, dissolves internally at bedtime every night. Oy. At this point, in a few more weeks I have a follow-up appointment (with possibly more needles), then another ultrasound 2 weeks after that. I am really hoping to prove that I've tried everything under the sun and that the Mirena needs to come out. I haven't felt good a single day since New Year's. 
For even more fun, I also have an ear surgery in 2 weeks. Luckily it's minor, but I'll still need some recovery time from the incisions and anesthesia (this is surgery #20-something since age 5, another chronic condition).

Lastly, the financial situation! I still have bills from the big endo surgery in the works. At the end of January, the surgeon's office submitted an appeal (for the out-of-network portion). I also called and asked for the claim to be reprocessed in the light of it being an urgent surgery that no one else could properly treat me for. Crossing fingers that they will accept and help to cover SOME the cost. Otherwise, I will have to pay out another $10,500 on TOP of the $15k we already raised.

Thank you all for listening, and your dear, life-saving support. Couldn't do this alone.

Hugs,

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