melaninandmoxie.com

This is going to be long. And it probably isn't going to go how you think it might. But today is Valentine's Day and I want to take a moment to give thanks for the power of community, of kind actions, and of love.I've been having a *really* difficult few months. The kind of difficult that no amount of bold type, underlining, or capital letters can capture or accurately underscore. In late November, I was diagnosed with suspected endometriosis, adenomyosis, and PCOS. All of this on top of the neurological issues I've been dealing with. In fact, as it turns out, they could each be in a vicious cycle of exacerbating one another (how's that for perverse?). I was prescribed pelvic floor physical therapy, more yoga therapy, and acupuncture; referred to a functional medical doctor and a gastroenterologist; and told to prepare my body for specialized surgery to remove the endometriosis that's likely growing in my pelvis and diaphragm, adding to the constant pain I'm in and strangling my organs.To prepare myself, I have to eat as healthy as possible, work on figuring out ways to reduce the inflammation in my body, and try to be as active as possible without being so active that it causes my body to flare up (oh yea, in nearly 4 years, we haven't been able to figure out where that line is). I have at least six medical appointments a week. I'm supposed to limit stress, but I still need to find a way to afford the surgery (did I mention that the surgery alone costs 10K?), out-of-network medical visits, and medical equipment I need (none of which are covered by insurance). AND even if I can do all that, I will likely have difficulty getting pregnant and still have neurological symptoms. Meaning that even if we find a way to afford surgery by one of the few excision specialists actually trained to remove the endometriosis, we have to speed up our timeline of when we were hoping to try to have kids, find money for the IVF that I'll likely need, and EVEN THEN, I might be looking at a number of miscarriages--if it even takes. And there's no telling whether my neurological symptoms will get better or not, or how they'll react to the process.If your head is spinning, don't worry. I've had two months to digest the news and mine's still spinning too. My pelvic physiatrist was kind enough to explain to me what endometriosis is, to give me a really helpful book on battling it (I highly recommend Beating Endo), and to explain why so many of the providers who specialize in treating my conditions are out-of-network. (In short, the insurance system doesn't allow doctors the time they need with patients to accurately diagnose and treat complex diseases like endometriosis, and insurance often leaves them eating costs of procedures/visits.)So I've spent the last two months trying to understand what this news means for me, and for my life with V. Discovering that I have a disease that ravages my body, grows inside and on organs, effectively gluing them together, and that only 4% of doctors worldwide know how to spot the disease in early stages. Even fewer than that specialize in excising it--basically cutting it out at its root so that there aren't lingering pieces that grow and continue to cause pain or undue stress in the body. Doctors do not know why or how exactly it happens.Here's what we do know: 1 in 10 women in the U.S. suffers from endometriosis. The basic part that most people Google says that endometriosis occurs when tissues similar to the ones in a person's uterus grow outside of the uterus. What they don't realize is that endometriosis can cause an autoimmune-like response where the body tries to fight the cells that shouldn't be there. We know that, like cancer, it can take many forms and shapes. It's been found in the lungs, and in rare cases in the brain. It frequently grows on and in the bowels, the rectum, and the uterus. Even small amounts of it can cause immense pain and debilitating symptoms.We also know that a typical gynecology rotation in medical school spends hardly any time teaching about endometriosis. In fact, it's considered a subspecialty of the subspecialty of gynecology. So, the doctors who recognize it, and the doctors qualified to perform excision surgery in such a nerve- and muscle-dense area as the pelvis and the diaphragm are few and very far between. We know that some women fly cross-country for appointments with these specialists--often accruing tens of thousands of debt or more. We know that seeing a gynecologist who claims to be able to treat endometriosis but is not in fact a true specialist can cause women to need as many as 17 or more surgeries during their lifetime. We know these surgeries can each be debilitating and can cause extra scar tissue that can disguise any remaining endometriosis. We know that surgeries can make endometriosis cells spread. We also know that most of the progress in this field has been the result of patient advocacy. And, we know that, on average, it takes between 6-12 years for a woman to be diagnosed.In this sense, I suppose I'm lucky. Although I've had painful periods since my first period, birth control has helped stave off many of the symptoms of the endometriosis and adenomyosis growing within me. I've also had the good fortune of meeting really smart, really dedicated and curious doctors willing to get to the root of the things that keep me from having a normal life. And while I'm *immensely* grateful for this, I also lament that this is what lucky feels like.Thanks to Nitika Chopra and Healthline, who sponsored the first ever conference for people with chronic illnesses, I was able to connect with Drs. Tayah Ahmed and Sallie Sarrel , who helped me understand more about the pain I was experiencing, why my nerve blockers weren't helping it, and what steps I needed to pursue to progress. Next month, I'll be attending The Endometriosis Summit (hosted by Drs. Vidali and Sarrel), to connect with patients, patient advocates, and practitioners as we exchange knowledge and experiences related to Endometriosis.I've been on a strict Autoimmune Protocol diet to try to reduce my inflammation and identify inflammatory foods. For nearly 8 weeks, we've eliminated: eggs, soy, wheat, grains, gluten, dairy, rice, beans, legumes, excess sugar, added thickeners, vegetable oils, chocolate, all nuts and seeds, potatoes (except for sweet potatoes), tomatoes, peppers and other nightshades,most of our regular seasonings/spices, and alcohol. 'Hard' is an understatement. V has been an absolute saint through it all. He's been cooking and prepping like a mad man to make sure I have compliant foods (healthy proteins and lots of veggies). He's found alternatives for some of our favorite seasonings and even scoured stores for obscure products like tiger nut milk and coconut yogurt without thickeners or added sugar (spoiler alert, there is only one brand and it's pretty gross). And, to be honest, once you get over the initial shock, focusing on healthy proteins and vegetables is pretty delicious--it's just also expensive and takes adjustment, and means no cocktails, no comfort chocolate cake, and very little eating out for these foodies.And it's been really hard dealing with all of the emotions of receiving this news without having my favorite comfort foods to lean on. Without being able to go out (or stay in) for a cocktail. And without really feeling or seeing any results (apparently it takes some people 3-9 months to see a difference in their inflammation levels). So, I've been pretty depressed and dejected.My days are filled with a swarm of swirling questions: how are we going to pay for my medical treatment and devices? How am I going to work out and lose weight when I can barely get myself to the kitchen or bathroom most days? Is it irresponsible to try to have a baby when it's so much work to even take care of myself? What if we wait to see if I get better and then miss our chance entirely (the best chance for me to get pregnant is apparently just after healing from surgery)? How will I handle miscarriages? Will the surgery really get rid of my pain? Will I be able to get my life (or even some of it) back? How

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