Today is Thanksgiving. Growing up, I spent Thanksgiving at my great-grandmother's, packed into a small ranch house in my hometown, full to the brim with extended family arguing over politics, decorating the Christmas tree, and watching Willie Wonka and the Chocolate Factory in a tiny bedroom with my cousins. The evening usually involved lots of food, lots of pictures, but absolutely no shopping. Now, we still caught a few minutes of Willie Wonka on television while eating our Thanksgiving Eve dinner fresh from a neurology appointment.  My husband browsing the net to see what kind of crazy Black Friday deals are happening, and I'm posting to my Jamberry Independent Consultant page with the Black Friday deals going on within the Jamberry universe. That's how I'm earning a little income while I am home with whatever-is-happening-to-my-feet that's making it difficult to walk. With everything that has happened this year, I've missed 11 weeks of work, and counting. There are serious benefits to working from my couch. 

"Wow, this store is guaranteeing a $200 television to anyone who is in line at 6pm on Thanksgiving!" my husband exclaims. "Do you think we'll be done with dinner by then? That's an amazing deal."

It is an amazing deal. Stores these days realize the amount of money that is up for grabs for anyone who is offering rock bottom prices for fancy electronics and other big ticket items. I mean, a department store is advertising a deal on an XBox One! We've all seen the insane footage of people trampling one another to make sure THEY GET THAT DEAL. I've participated a few times in my adult life, especially when I was in need of a particular item and wanted to spend the least amount of money possible. Thanksgiving with my in-laws typically involves peeking at the Black Friday flyers during dessert, and two years ago, we ran into traffic heading home from dinner because we lived in close proximity to a mall. Somehow, though, I just can't stomach the early evening shopping on Thanksgiving. Whatever happened to the good ol' turkey nap? Time with family? Savoring the evening and just enjoying great food and company?

Then there are the retail employees. I doubt that employees are arriving at 6pm for these sales. More likely, there are cashiers and people stocking inventory early Thanksgiving morning, and I'm positive there will be overnight shifts as the push into the biggest retail weekend of the year begins. There's no way of stopping this money-making train when incredible deals are drawing customers to line up around the block. While I'm not going to make any judgments about whether or not anyone participates (including my husband), there is something we can do to achieve at least a little bit of balance in all this chaos. 

I've decided to become a social media ambassador for #GivingTuesday, a movement to bring back the spirit of giving that makes this time of year so special. Here at Ask Me About My Endo, we have a strong belief in giving back to people in our Endometriosis community, and today I would like to encourage you to take part in #GivingTuesday with me. Right up above, we have a tab called Sponsor a Surgery. This is a page where we list women who are seeking or who have undergone excision surgery for Endometriosis. Excision surgery is a highly effective way of removing all of the disease from the body using wide margins and sending the tissue to pathology. As opposed to the most common surgical technique employed during a laparoscopic surgery for Endometriosis (ablation - burning the surface of the disease), the recurrence rate for excision is low. Women who have this surgery have a far lower chance of their pain from Endometriosis returning because ALL of the disease has been removed from root to tip. There are only a handful of surgeons in the United States who perform this surgery effectively, so many women have to travel for quality care. Some insurance companies deny coverage for this surgery, or the surgeon is out-of-network, so the cost of this surgery is higher than the less effective types of treatment. The financial burden is high, and we at Ask Me About My Endo are on a mission to help in whatever way we can. We host links to fundraisers for some of these women, and we donate sales from our Etsy shop to these fundraisers. Ruby the Endo Roo, our mascot, is sold in our Etsy shop, handcrafted by yours truly, and $10 from each sale is donated directly to the fundraisers. 

This coming Tuesday, I'm asking you to help us make a difference. If you are able, please consider making a donation to an Endometriosis cause. There are non-profit organizations that are dedicated to further Endometriosis research, providing support, and advocating for awareness and high quality care for women with Endometriosis. Many of these organizations have made a huge difference in my life, and they have most certainly made a difference in our community. The Endometriosis Research Center, the World Endometriosis Research Foundation, and the women listed on our website are some worthy causes that we would love to encourage you to consider. Whether or not you're able to contribute, I hope you will join me in being a social media ambassador and help spread the word about donating to charity on Tuesday, December 2nd, 2014. 

Happy Thanksgiving everyone. I hope you will join me in promoting the spirit of giving this holiday season. 

On this day of thanks, here is a list of things I'm thankful for:

• my diagnosis, for putting a name to my symptoms and giving me the power to research my disease and advocate for better care
• my health team, for helping me navigate a complicated jumble of symptoms
• my excision surgeon, for listening, teaching, empathizing, effectively treating, and continuing care
• my Endo Sisters, for supporting me and helping me learn new ways of coping
• my family, for believing me when I said I was sick and understanding when I'm not well
• my husband, for walking with me through my darkest days and caring for me even when it's not easy 
• my friends, the ones who have stuck around, for picking me up when I'm feeling down, and excusing cancelled plans because you know I'd rather be with you than sick in bed
• my community, for all the mentors, researchers, and warriors fighting for a better tomorrow for women like me

...and finally, for you, for sharing, collaborating, following, and supporting. 

Thank you.

"I would do anything to have a baby! It's worth the pain." 

As I read these words, written by a fellow Endo Sister, I felt guilty and hurt. Here I was, expressing my feelings and experiences regarding infertility, and suddenly what I was willing to do wasn't good enough. 

Some might say I didn't try hard enough. Some may say I didn't give it enough time. In theory, I suppose we are all supposed to leave the door wide open, and subject ourselves to the emotional and physical assault of fighting against our bodies to try to have a baby. But even world class fighters know when to tap out. 

It's a serious injustice in our society that trying to have a baby plays such a huge role in who we are as individuals. I literally turn into one of those cartoon characters every time I read about how giving birth is the ultimate expression of womanhood. I suppose in a society where we sexualize women for entertainment and have to justify ourselves in every corner of our lives, where the major milestones revolve around sexual maturity (our first periods, losing our virginity, our first child, "the change"), we never really stand a chance. For those of us who most likely will never conceive, it feels like we are stuck in some kind of sexual limbo. Our bodies will never be changed by giving life. Any stretch marks on my body are the mark of my own making: puberty, the freshman 15, or in my case, weight gain brought on by medically induced menopause.

For years, I believed that I was preserving my fertility by not having my period. Hormonal suppression destroyed both my body and my spirit, but once I went off the progesterone-only pills, my cycle returned. I ovulated. I had extremely painful periods. I expected to be able to get pregnant, and why not? I was/am young, a mere 29 years old at the moment, but soon to be 30. I was once told by a gynecologist when I was first diagnosed with endometriosis that 30 was the magic number. A screwed up Cinderella story, get pregnant by 30 or risk never getting pregnant at all! 

Two years ago, my husband and I began our journey to start a family. Frantic at first, driven by uneducated doctors who believed getting pregnant would treat my disease. Two surgeries, a miscarriage, and likely two more very early losses later, we made the unbelievable decision to stop fighting my body. While on a weekend getaway celebrating two years of marriage, and two years trying for a child, I said no more. No more blood tests. No more drugs. No more anxious "two week wait." I'm tapping out. 

It's not that I'm giving into defeat, beaten down by life, or tired of heartbreak. My body is done. This year alone, I've had three surgeries for various reasons, but it's more than just feeling sick and tired. I actually feel pretty good, in comparison to where I was two years ago. What is really driving this decision is both what my body has been through, and what might await it if I don't stop.

Let me tell you a little about where my body is today. I've had two excision surgeries for endometriosis, and plan to have one more to remove my uterus for suspected adenomyosis, a disease which causes endometrial-like tissue to grow inside the uterine wall, causing severe cramping, bleeding, anemia, fatigue, and leg and back pain. It is also associated with several pregnancy complications, including placental abruption and early labor. I have bone loss in my spine from taking drugs I was told would "treat" my disease, but which just masked symptoms as my disease continued to grow. I have an extra 40lbs I have been unable to lose since my medical menopause. My joints hurt ever since I took one round of a fertility drug this cycle. I have 12 scars from surgeries that gave me back my quality of life, and in one case, saved my life. I have some fatigue and brain fog from who knows which cause, whether it be my disease directly or long term side effects from suppression drugs. I have a couple kidney diseases, countless aches and pains, headaches, allergies, all somewhat secondary and mostly managed well. And lastly, I have hormonal imbalances. 

We've done a lot of work over the past year with our NaPro doctors to supplement and regulate my hormone imbalances. When we started, my estradiol was too low at ovulation and too high after. My progesterone was low, but close enough to normal that we actually got pregnant! After we miscarried, I continued supplementing my progesterone while we avoided conceiving until my surgery to check for blockages in my Fallopian tubes, since it would be risking life threatening ectopic pregnancy. The day I went into surgery, I found out my estradiol was perfect! Our efforts were successful, and we were given the green light to try again when I woke up with two healthy Fallopian tubes. 

We began again with fresh hope, on the road to our "rainbow baby," and it wasn't long before my period was late again. Yet, something wasn't right. I saw a shadow on my pregnancy test, just enough to get my hopes up, but the next was stark white. For days, I peed on every test strip I had in my house, but that shadow never returned. Although four days late, my period eventually showed. 

Bloodwork came back showing my progesterone was just 6.5, dangerously below the recommended 20 for a healthy pregnancy. Lower than my previous cycle, which was lower than the one before that, and the one before that. This cycle, I went against my gut feeling and took a fertility drug meant to improve egg quality and support my luteal phase by raising my progesterone. Despite that drug, and bioidentical vaginal suppositories, I opened my lab results the second day of our anniversary vacation to find my progesterone was at an all time low...and so was my estradiol. Now, both results were abnormally low, but this time, I also had severe joint pain that made it nearly impossible to use my right hand and arm for weeks. It was all for naught.

I know many people will question why I didn't try IVF. Our decision was complex, a mixture of contraindications and gut feelings. Risk of ovarian torsion and overstimulation, risk of going under anesthesia for a fourth time in a year, a deep, gut wrenching instinct that it just wasn't the right choice for us, and something else. 


A feeling of being called to adopt. 

I've always wanted to be a mother. My husband asked me years ago, while I sat in tears discussing why I wanted so badly to try for a baby, "What about your career? Don't you want to work on that first?" No...I'd give up my career in a heartbeat to be a mom. I went to college and received my masters degree because everyone has a place in society, and I loved working with children, but my heart's true desire was to have children of my own. 

It is devastating to not have that wish filled by a biological child. I'll never feel a kick inside my body, or know what it's like to be utterly uncomfortable and exhausted at the same time as complete joy and fulfillment. I'll never push through 36 hours of labor and struggle to guide my child toward my breast for the first time, desperate that she latch on and learn to nurse. I'll never sit in the middle of my friends and family, tying ribbons around my belly and opening precious little baby socks and diaper cakes. I do so very much want those things. But there's something I want even more.

A healthy body. One that is able to care for my children, whom I will have someday. Born in my heart, carried home perhaps at six months or two years old, cherished and nurtured and loved. I will raise my children with the knowledge that I put their needs above my own desires. They need a mom, whole and happy, and not beaten down by life and medical procedures. Not pushed to the brink by miscarriage after miscarriage because the pregnancies just wouldn't stick. 

When you go through parenting preparation courses, you discuss legal risk and the potential emotional roller coaster of adoption. Building a family when you have infertility isn't easy, no matter how you end up doing it. I know one thing, though. 

This is the risk I AM willing to take. 

I'm not willing to risk more bone loss. I'm not willing to risk the progression of my disease by increasing my estradiol via supplementation. I'm not willing to risk the breaking of my heart when I tried so hard to achieve a pregnancy only to lose it again. I'm not willing to push myself past what my spirit can endure. I know in my heart that something is telling me it's time to let go. My body cannot do it, not right now. Not after what it has been through. My body needs rest. My body needs pampering. My body needs me to focus on something outside of itself. 

My body needs hope. My spirit needs hope. And somewhere, there is a child or two who need that hope as well. 

I will be that hope. Every step in my life has led me to this moment. The moment when my husband held me in his arms and let me say no. "I'm all done. It's time to stop." 

It's ok to say no. It's ok not to take the next step. If your body is telling you, no more, it's ok to listen. 

Ok...that's a pretty big statement, and I know a lot of you are going to say, "Who the @#%! does she think she is?! My pain is off the charts!" but hear me out. Pain truly sucks, and to be honest, infertility comes in a close second to pain as one of the suckiest parts of having this disease. I'm thinking of something that is less tangible, something that we all face while living with a chronic illness, and something that can oftentimes go hand in hand as the hardest thing for others to understand. 

Dependability. 

"Whoa, we got a unique thought here!" you might say to yourself sarcastically, but seriously. I've been living with this disease for 16 years, and have had more episodes of pain in my life than I could possibly recall (not that I'd want to). Living my life today, Wednesday, November 5th, 2014, that episode of excruciating pain that first landed me in the hospital nine years ago (though permanently etched in my brain because a super hot EMT (sorry, Jimmy) had to look at my *ahem* sick *ahem* in the bathroom before lifting my only-wearing-a-tshirt butt off the hall floor (while my cat was climbing all over paralyzed-by-pain me) doesn't necessarily have a lot of significance. Sure, it's an important incident to mention to doctors, but that cyst and kidney stone are no longer in my body, nor do they throb from time to time. That day is gone, as much as any major day can be. However, my dependability that week is a mark on my record, so to speak. All the days I called out sick, cancelled with friends, didn't show up to a birthday or bridal shower, spent the day hopped up on pain pills and screaming in my bed...those days are remembered by the people I let down. 

"Oh, you shouldn't feel that way! You couldn't help it!" That's easy to say when you understand the disease, or are reading about it in your office while you snack on whatever was in the break room. To all my employers, friends, family members, however, those days mean something: I can't count on Kelsey. She's great...when she's here. Granted, I work my butt off to be the best friend/daughter/wife/cousin/sister-in-law/employee I can be, but however kickass I might be when I do show up, my absence is remembered far more intently. 

I'm lucky enough to have built a flexible career that I love, if not always what I had envisioned for myself, it works. Yesterday, however, when I arrived at work feeling under the weather and talked to the family I nanny for about going home, I felt that unmistakable feeling of disappointment. Unbelievable amounts of understanding, compassion, and friendship, yes...but disappointment. And worst of all, disappointment in the little boy I care for. 

I've had an unforgettable year, health-wise. Three surgeries have equaled nearly nine weeks of missed work, and I am still dealing with the fallout of having gone under general anesthesia three times in six months, as well as two of my digestive organs being removed (ZERO immune system, but that's just my own speculation). Everyone I speak with understands that I've been through hell and back, and that I need special understanding when it comes to showing up for work, etc. That doesn't erase the disappointment when I call in sick or in pain, once again. I admittedly push myself harder than I should, and perhaps I should have taken off more than a month after my last surgery...but I hate this! I hate being sick, I hate staying home, I hate disappointing people, but especially disappointing myself!

In high school, I received an award for dedication to my dance team, which basically meant I showed up for everything. Nowadays, no one's giving me that award. HA! I may feel dedicated, but my body makes sure I take the "me time" I so desperately need, whether I want to or not. It's infuriating to be living in your body, knowing the potential your spirit and mind could achieve if only this infernal body would get its act together and stay healthy for more than a month at a time! This is nothing new. Most everyone who is reading this is nodding their head, maybe whispering, "YES!" under their breath. Unfortunately, that doesn't change things, does it? As much as I identify with you, and you with me, that doesn't change the world and its expectations of using just a few sick days a year, with advance notice. 

I drove my sorry butt home from my failed attempt at going to work with tears in my eyes, frustration bubbling to the surface, and the sad, tiny, defeated part of me taking advantage and shouting, "Just go on disability already! At least short term, quit your job and just stay home!" Then, the far more powerful, prideful part of me shouted back, "Oh shut up! I love my job, I love my kiddos, I love my families, and I don't want to lose momentum!" Admittedly, it would be defeat to stop working and accept that my body can't pull its weight in society. I wanted to change the world, nurture young minds, and proudly answer the question that always comes up when meeting someone for the first time (So, what do you do?) with, "I'm a teacher!" 

But I'm not. 

Right now, anyway. I introduced myself the other night, sitting in a room with other couples hoping to adopt, as a "former teacher." Because I don't teach right now. I nanny. I nanny on a flexible schedule, one that allows me to miss nine weeks of work and grudgingly call out sick when I need to, and one that in all honesty I should probably still hire my own personal backup given the amount of time I've missed this year. While I love my job, I hate that feeling of unfulfilled potential. Not using my masters degree I worked my butt off to achieve. I have lofty plans of being a reading consultant, but as of now, that's not what I'm doing because I haven't had the time to invest into it. 

Dependability. 

Chronic pain is a bitch, but the hardest part, at least for me, is letting people down...myself included.