Help voice silent disease - Fund V Hough's healing from Endo

For: Veronica Hough
Charlotte, NC
Organizer: Veronica Hough
Help voice silent disease - Fund V Hough's healing from Endo (Veronica Hough)
$715
of $10,000 goal
7% Complete
Raised by 8 donors

The Story

Even though it might be good to clear up the misconceptions about endometriosis first, I'll cut to the chase:

Endometriosis is common but varies extraordinarily in severities. Now no longer being able to eat or drink (even water) without horrible symptoms (including but not limited to incessant vomiting and severe pain), I can say that although endometriosis itself is not reportedly fatal, the symptoms are killing me.


It has taken me 20 years to get help for a disease that started baring its teeth as early as the age of 5, and the only way I’ve gotten help is by dedicated advocacy, both from self and few others, including my loved ones and one PCP among the seas of doctors whom I've seen. I have found help from a center in Georgia who understands my condition, its severity, and has the education, training, and skills to effectively treat me.


But the center is in GA – meaning my NC insurance won't cover it.


There are no excision specialists in North or South Carolina. I've been dismissed for so long and am now unable to eat or even drink water without immense pain and vomiting. I have lost 30 lbs since late April, and I am still losing weight. Many "treatments" have failed as they were not effective or even painfully counterproductive, such as endometrial ablation which ultimately is what ended my chance to ever have children of my own.


According to my history and symptoms, the doctor on my case says in addition to my laparoscopy and excision, I will likely need a bowel resection, a partial hysterectomy (uterus only) in case of comorbid adenomyosis, and a possible appendectomy. Estimated total cost to just initiate surgery/treament, (to pay for all the doctors involved as well as hospitalization) is over 20k. Total estimated cost for the hospital alone, not including anesthesiology and pathology is $65,000. 


If you want to read more deeply about my fight with the medical industry - most of us with endo have one - you can read my endo story here.


MY PLEA & COMMITMENT TO THE FUTURE:

Unable to pay for even 1/4 of this on my own before July, I ask for your help. Because my endometriosis has gotten so much worse, my only income is disability for conditions associated with my endo. Once I recover, I know I'll be able to pave a financial future for myself.


I'm an artist and tutor with many passions and hobbies that I have been unable to commit to for almost a year now. I had been trying to get my work out there and continue pursuing freelance opportunities, but having to manage my symptoms became my life entirely. I was published in 2017 but have not created anything new for almost a year, which hurts as art is a big part of me. I had started work at a craft store and actually loved it too but had to quit due to the debilitating increase in my already existing pain.


I miss dancing. I miss getting up early, because the pain makes getting to sleep before sunrise nearly impossible. I miss cooking/baking for loved ones. I miss eating food and drinking water without pain. I miss playing with my cats and spending time with my Bf without my symptoms interfering. While I’ve never been 100% symptom-free, I know there is more to life than revolving everything I do around my symptoms’ management, and while I know there is no cure for endo, this surgery is my best shot at being able to live fully, dedicating myself to the things that matter most to me, including my health and happiness and aiding in the health and happiness of others.


Recovery from surgery will take weeks, maybe even months, and I'm aware of that, but for the first time in my life, I am genuinely hopeful and looking forward to the future. I want to volunteer, (and have already signed up), to teach the Endo EnduKit in classrooms so I can spare others from a further decade too, (or even longer), of feeling betrayed by their own body and the providers who are supposed to help them care for it. I want to take photos for and take care of shelter animals at the Humane Society and while I have signed up and gone to orientation, I have not been able to volunteer further due to the pain and other symptoms I deal with every day.


In Feb of '16, I made my purpose into healing and helping to heal. I'm an advocate, and endo has taught me self-advocacy, which is urgent when dealing with what is often called a "silent" disease. I know that I'll reinforce that purpose for myself more aptly when I am more physically able to take care of myself.


Please help me help myself so I can live the life I need. I'll pay your kindness forward. Any amount helps. Word of mouth helps. Even if you just learned something new about endo and what it’s like, please share, because that helps us all.


Thank you so much. I wish you great happiness and enrichment.  

Fundraiser Updates

Posted on June 10, 2018

Posted on June 10, 2018

Finally had to go to the ER to get IV fluids. Ofc it wasn't that simple and was asked a lot of questions that seem really pointless to answer to most doctors here now, (e.g. "Why can't you eat?" "Are you having pain?"), and I was actually advised by several people (including my PA) not to elaborate much on those answers because of the stigma those with endo often face. It was awkward manuevering but thankfully the ER this time was respectful. I'd like to think they were just compassionate and not cynical but it's also probably because I made sure my pain was not the focus at all and kept directly focused on my dehydration and lack of nutrition. They ran extensive tests because they were also concerned about my heart. It was then suggested I make an appointment with my PCP about TPN - tube feeding. I feel really scared and starting to feel really down again about this situation. It's hard not to when I know the treatment I need is available, will *significantly* improve my life and allow me to live again, healthily, even normally, and that the only barrier that stops me is monetary. What upsets me too is that all these failed "treatments," hospitalizations, medications, surgeries/procedures that my insurance HAS covered, many of them made my condition worse. But the one that does have not just a small chance but an OVERWHELMING probability of effectively treating me so I will not have these issues in the future, isn't really recognized, let alone covered. (It is out-of-state, but even if I had the option to do this treatment effectively here, it not uncommon for patients to have to file appeals that are frequently ultimately rejected). Miseducation/lack of education in everyday gynecology contributes immensely to these heightened (and unnecessary) costs, and worse, hurts the patients further and further. Awareness is so important, and so is advocacy. I am glad that my insurance has at least covered the failures. Many women are not as lucky, being uninsured or having less coverage and having to pay for the things that mess them up. However, they were still treatments that made things phenomenally worse and cost money that could've been put to better, more effective uses, for myself *and* for others. Info about the costs of delayed diagnosis and ineffective treatment (also in regards to IVF and while that is a big issue for many who have had untreated endo, it is not applicable in my own case - I am 100% unable to have a baby because of these failures, and will never be a biological mother no matter what I do):  https://bit.ly/2LDkECc


Posted on June 3, 2018

Posted on June 3, 2018

I learned that the total estimated cost of just the hospital and center alone - not including anesthesia or pathology - total to over $70,000. The cost to simply get into surgery/treatment (so total deposit to all parties) total to over $20k. For the first few days after learning this I started feeling hopeless again, but I am determined to still try because I know that once I am able to recover I will be able to give back, pay it forward, and live the life I want to live.


Posted on May 26, 2018

Posted on May 26, 2018

So grateful for those who are supporting me, either by sharing or donating or both. My love goes out to you all and I especially want to take the time right now to personally thank those in the dA community who have been sharing generously (even those who have been complete strangers up until now), raising awareness not only for my campaign but for the disease itself. Thank you for all and any donations -- none of which are small to me, as anything helps -- and thank you also for using your own artistic platform to share this. It is immensely appreciated, and I feel truly blessed. To those not on dA, the same goes for you -- your help and support in any capacity is absolutely appreciated. Sending great love, warmth, and noninvasive hugs. :) 

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