When he proposed in June of 2017, we were overwhelmed with excitement and optimism. I, like most women, have been dreaming of my wedding since I was about 5 years old. I had all kinds of plans and dreams, but knew we couldn't afford most of what I had dreamed of. My only family consists of my 94 year old grandmother in assisted living, and my daughter and young grandson. So the tradition of the bride's family paying for the wedding is not an option. But we had a plan. Unfortunately, as it often does, life threw us a curve ball. A series of them, really. And now we are in a difficult situation and have decided to take the even more difficult step of asking our loved ones, and strangers even, for help. This is hard for us to do, as we are both used to doing for ourselves. Without your help, we are likely to lose all the deposits we have paid to wedding vendors and will not be able to have a ceremony that includes our loved ones. We love each other so much and have a wonderfully loving and supportive network of family, friends, and adoptive family, and we genuinely want to share this incredibly exciting and special moment with them. We are also dealing with a large number of unpaid medical bills that are taking away from our ability to save for our wedding. That combined with my inability to work over the past year, has brought us here today.
I'm Sunny, a 44 year old herbalist from the TX hill country. I grew up an Air Force brat and have lived all over the US and in Germany. I was sick a lot when I was young, with migraines by the age of 12, my first ulcer at 14, my first bleeding ulcer at 18, and a long list of high fevers and infections like strep and bronchitis. I didn't think much about it at the time, just hated always feeling like I was a little sick, or a lot sick, but always some level of something going on. I've always been a hard worker and am used to doing for myself. I graduated high school with honors and graduated from UTSA with two degrees, making the National Dean's List, despite spending two semesters pregnant and two with a newborn. I was a single mom for all 18 years of my daughter's childhood and typically worked two and three jobs to make ends meet, until 2000, when I was recruited by the largest financial services company in the world and moved to Denver.
Nine days after arriving, I was in a crippling car accident that left me with a traumatic brain injury, multiple injuries to my spine, six dislocated ribs, a rotated pelvis, damaged ligaments to my hand/wrist, my left leg approximately 2” shorter than my right, damage to my left knee, a torn rotator cuff, glass in my left eye and embedded all through my scalp down to my buttocks, PTSD, lots of soft tissue damage, nerve damage, and a host of other minor injuries. The impact of my head going through the back window caused a perilymph fistula. This is a condition where a hole in the inner ear (or in my case, two holes) causes fluid to leak into the air-filled middle ear, resulting in constant motion sickness. Nausea was never-ending, vertigo and vomiting frequent. Balance issues caused frequent trips, falls, and stumbles into walls and such, often causing more injuries.
After a year of trying every type of therapy available, I finally had surgery to repair the fistula. It was a difficult surgery and coupled with all the other tests, scans, procedures, and therapies, my path was difficult, pain-filled, and generally very lonely. I had no one in Denver besides my then 5 year old daughter, and my life revolved for many years around just surviving. I was unable to work, and desperately tried to make ends meet with welfare and very occasional help from relatives. I met a woman in Denver who would eventually become family, and that friendship resulted in my moving to CT in 2003.
Health care was much better in CT, and I managed to get out of a wheelchair and began walking with a cane. I started studying herbalism, and eventually would start selling herbal teas and remedies at craft shows and festivals whenever my health would allow. Despite pushing as hard as I could, I wound up being homeless many times over the years, suffered the humiliation of begging for money on the side of the road, and endured endless judgment from both relatives and strangers who had no idea of what I was dealing with.
It wasn't until about four years ago that I learned I have a rare genetic condition called Ehler's Danlos Syndrome (EDS). It's a progressive connective tissue disease that effects the entire autonomic nervous system. It has resulted in migraines, myriad GI issues, hiatial hernia, gastropraresis, reflux, asthma, sleep disorders, POTS (postural orthostatic tachycardia syndrome), arthritis in most joints including the spine, nearly constant pain, frequent fatigue and muscle weakness, partial paralysis issues in my legs, hypermobility, fragile skin and poor wound healing, frequent joint dislocations/subluxations, heart issues, early onset osteoporosis, degenerative disk disease, stage II scoliosis, Raynaud's disease, fibromyalgia, myofascial pain syndrome, platelet issues, severe menstrual issues, severe dental issues, TMJ, difficulty metabolizing medications, and many other manifestations that keep popping up. Another terrible effect of EDS (for me) is that it causes me to have teeny, tiny, web-like veins that make blood draws and Ivs an absolute nightmare.
Through all this, I never quit fighting or lost my optimism, though some days are certainly harder than others. I've dealt with this all by keeping a positive attitude, joking about my predicaments, finding countless things to be grateful for, and reaching out to help others whenever possible. Because of my history of homelessness, I have a soft spot for those in need and have organized a blanket and coat drive for a local shelter, have gone to the shelter to hand out sandwiches and other goodies, have bought food and warm clothing and frequently give my last dollar to help strangers on the street. Fortunately, I was blessed with meeting Dmitri, a man with a heart very near to mine.
Dmitri is 46, and from Sacramento, CA. He came to live in the Austin area a few years ago, and that is where we met. He is a veteran of the US Air Force, having received a number of awards and commendations during his time of service. While stationed in Japan, he was selected to be on several humanitarian missions, and he still has that desire to give back to his community. He has joined me many times in helping homeless people in any way we can. We also have been donating to humanitarian projects as Christmas gifts the past couple of years. He works in IT, telecommuting from home. His large, extended family mostly lives in the Sacramento area, and are very close-knit. Raised by a father who is a musician, and a mother who rescues wild animals to rehabilitate and re-release into the wild, Dmitri is creative and loving, and he wears his heart on his sleeve.
Dmitri has been a dedicated caregiver. He has had to take a lot of time off from his job to take care of me, particularly when we are still stuck in an ER when the workday begins. He has had to take on all of my home duties in addition to his own, leaving him to work, take care of our dogs, cooking, cleaning, laundry, shopping, yard work, and taking care of anything needed with the house or car as it comes up. In his “free time” he makes amazing steampunk costume pieces he hopes to sell when we are able to start doing shows again. He never stops until he collapses into bed at the end of the night. Nevertheless, a lot of things have had to be pushed aside to deal with later (especially in the cleaning department) so he can get to the must-dos first. This has all been extraordinarily stressful for both of us. Getting access to better treatments would hopefully allow me to get better, and then to take back some of the load. I desperately want to do this for him.
The first year of our relationship was fairly smooth, my health was difficult, but we were managing. When we got engaged, we decided to get married in CA because Dmitri's large family was almost entirely there and my loved ones in TX were almost all friends. It made sense to get married where the family is, and to have a second reception for all our loved ones in TX. My adoptive family all selflessly agreed to travel to CA to participate in the wedding. We were on cloud 9. We flew to CA in February 2017, to let me continue getting to know his family, and even though we weren't officially engaged yet, to scope out a venue for the wedding. While there, I came down with a bad respiratory and sinus infection. I was terrified to fly home, having heard horror stories of people flying with fluid in their ears. We took all the recommended precautions, but the worst happened. As we took off, an explosion occurred in my left ear. Then horrific popping continued in both ears as the cabin pressurized. The pain was unbearable and I sunk into Dmitri with wracking, uncontrollable sobs, trying to stifle them for fear some passenger or crew member would think I was having a meltdown of some sort and get me thrown off the plane. I had to endure this awful situation three more times as we landed, then took off for the second leg of our journey home. It was akin to torture.
Eventually, the sinus infection cleared up, but I was finding myself with nearly constant nausea. I would get vertigo whenever I looked down at my feet, tried to step down stairs, or when in the car. It kept getting worse until I would get it simply by moving my eyeballs or standing up. I began vomiting frequently, and by the end of summer, the vomiting was daily, often for hours at a time. I would get so weak I couldn't stand at all. I was practically bedridden for most of the year.
It wasn't until around September that we made the crucial connection. That explosion in my head during that flight home? That was my fistula patch ripping away. We made an appointment right away to see a surgeon. The first surgeon agreed with our diagnosis, but said that complicating factors in my case made him uncomfortable performing the surgery. He sent us that day to their top surgeon in their group who specializes in these difficult, delicate surgeries. It took forever to get the surgery approved and scheduled, and we even had it unceremoniously canceled by an anesthesiologist who wanted to confer with my Cardiologist first. It was the end of November before we could get the surgery done.
Thankfully, it was successful. The vertigo is mostly gone, only having had a handful of bouts as of this writing. But there was another problem. I never stopped vomiting. It actually got worse. Since November, I've been in the ER twelve times, with no signs of relief coming anytime soon. I've mysteriously started packing on pounds, having gained over 50 lbs in the past 2 years, despite eating only a few hundred calories per day and throwing most of that up. The added weight gain (on top of the over 100 lbs I had gained after my accident from the dozens of medications they put me on and from becoming completely sedentary after having lived a very active life) has driven elevated pain levels, more subluxations as my body tries to accommodate the extra weight on my frame, increased digestive issues, and other related problems.
So that brings us to where we are now. I am nearly completely bedridden. I usually get up only to go to the bathroom or to the doctor/hospital. Any attempts to sit in the living room with company or to go out of the house for any reason typically sends me into a spiral that more often than not lands me back in the ER. The ER doctors and my own regular doctor are baffled at what is going on. I've had suggestions of everything from bleeding ulcer to my hiatal hernia acting in a way that it shouldn't. There has been a lot of talk about suffering gallbladders, but tests are inconclusive as of yet. I have an appointment to go to a GI specialist in a week, but my copay is $45 every time. We wracked up a number of these copays leading up to my surgery. We also have a stack of ER bills, plus bills from the surgery itself. We currently have no way to pay them.
There are a number of procedures we know the new GI will want to do, each with its own copay. There are several treatments that would likely help reduce the pain that I'm in 24/7. One of these is a series of injections into the facet joints in my spine, along with epidural injections to treat the degenerative disks, but the copay for each round of injections is $750 every three months. The nearest geneticist that is trained to treat EDS patients is in Houston, 3 hrs drive from our home and not covered by my insurance. Her out of pocket costs for the first visit and lab work is roughly $2000. But she could help me to actually get better, I believe.
None of these options are affordable to us right now. My illness has been devastating financially. Our great plan to fund the wedding centered on my herbalism business and the fall shows last year. Christmas is the busiest shopping season, and for crafters and festival vendors such as myself, that means typically a show every weekend between September and Christmas. Last season, I was only able to work one show. I sent Dmitri to three others without me. The rest all had to be canceled. Between the stacks of unpaid medical bills and my sudden inability to work, we are barely able to keep our heads above water. There is nothing left to put towards medical expenses, much less a wedding. We already had to postpone the wedding from February 11 to June 10, so that we could have more time to get me well and earn more money. But that time quickly approaches and I'm still no better. We firmly believe that if I could get some of the medical treatments that have been suggested by my doctors, I might be well enough to do a handful of shows before the wedding, allowing us to earn what we need.
Any monies we receive will go to pay off unpaid medical bills and to seek new treatments that might improve my quality of life. If we are fortunate enough to get more than what the bills amount to, any remainder will go towards paying for our wedding. We are planning a modest wedding, at a venue that is owned by the Sacramento Children's Home (100% of all gratuities they charge go to support the Children's Home), which is considerably less expensive than other venues we looked into. Despite taking a lot of shortcuts and doing lots of DIY, we still need about $10,000 for the wedding. This includes the remainder of the vendor charges, travel expenses to get us to and from the wedding (which are high, as we must rent a large van to carry all our wedding stuff and it takes 4-5 days of travel each way due to my health limitations), and cost of materials for our DIY projects. At this point, a honeymoon may not be possible. We would love to have some special time together to get away from all our stresses and worries, to just enjoy being together for a few days without looking at a to-do list. But we understand that may not be possible. The main worry is to just get to have our wedding, to have one special day to celebrate our love for each other with those we love, and a second day if possible, to celebrate with our TX loved ones who are unable to travel to CA for the ceremony.
We do love to give back, so we have decided to offer a free herbalism consult to anyone who contributes to our campaign. Just send me a PM and I will send details of our consult, which may include ways to treat common medial issues at home (often for free or with items already in your household), how to clean with all natural products, or how to make your own beauty products with items you probably already have. It's our way of showing how much your support means to us.
For those who have read this far, thank you. Thank you for your kindness and interest. Asking for help is very difficult for us, it goes against both our natures, but that is what we are now doing. If you aren't able to contribute financially, we sure would appreciate you just sharing our story. Thank you to all of our loved ones who have been so unwaveringly supportive and loving. We are incredibly blessed, and know that no matter what happens, all will work out in the end. To those willing and able to contribute, we appreciate your generosity more than you know. Much love.
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