Adoption is Not a Cure for Infertility - Perspective from an Infertile Adoptee

I feel like this blog should start with a disclaimer.

This post is not intended to offend anyone. I am going to try my hardest to address this topic from multiple angles - because I find it to be extremely complex. The topic of adoption can drudge up a slew of feelings from adoptees, adoptive parents, and those battling infertility. It is my hope that I have given this post thought for enough time to write it in a way sheds sheds light on an important and sensitive topic.

For those who have struggled with fertility, chances are at some point, a well-meaning person has brought up adoption.

"Have you thought about adoption?"

"You could always adopt."

"There is more than one way to grow your family..."

And the worst... "Why don't you just adopt?"

Let's first get what should be the glaringly obvious out of the way. Anyone who has struggled with infertility has likely considered ALL the possible options... including adoption. During our infertility struggles, we discussed adoption on multiple occasions. Please trust me when I say that asking if we thought about adoption is not a question that needs asked. And imploring those struggling with fertility issues to adopt... well, that's not much better. ESPECIALLY if you ask why we don't "just" adopt.

Now, I would like to share a bit of my personal backstory to help put into perspective why I have the stance I do when it comes to the topic of adoption as it relates to infertility. I hope it will create the necessary frame needed to understand where I'm coming from.

I'm an adoptee. I was adopted from South Korea as an 11 month old. My adoption was private and closed. I know very little about my biological parents. What I do know is my adoptive parents (henceforth referred to as my parents, because that is who they are) are incredible parents and I have two wonderful sisters. I grew up in a stable and loving home and was given opportunities I never would have had growing up in Korea with a single mother in a country that favors boys.

My biological father left when I was very young, 10 years my biological mother's elder. At some point, my biological mother, now single and just 18 or 19 years old, felt she could not care for me. She wanted more for me.

The other thing I know is that no matter how great my childhood may have been, no amount of unconditional love could prevent the deep-seeded abandonment issues, deep-rooted loss of feeling of security, and a deeply desperate desire for answers.

My parents struggled with fertility issues. For that reason, they chose to look into adoption. And after loads of paperwork, background checks, and waiting (and waiting... and waiting...), the outcome was me coming from Korea to America in January 1987.

At this point, I'd like to pause and look at my particular adoption story. Did you notice something?

My parents suffered through miscarriages.

My biological mom lost her daughter.

I lost my biological parents.

That's three major losses suffered by four different individuals. And I'd put money on the fact that this is the case for the majority of adoption cases - the adoptive parent or parents, the biological parent(s), and the adopted child(ren) have all experienced loss.


So what am I trying to say? Part of what i'm trying to get across is that adoption isn't a case of adoptive parents rescuing some poor orphan. It is not NEARLY that simple. (Sidebar - for the love of Pete, please never say to an adoptive parent that their child is "lucky" to have them. That goes double for saying it in front of or to the child Absolutely nothing is "lucky" when it comes to adoption. Just... don't.) When you flippantly suggest someone adopt, you're failing to recognize the utter heartbreak that is involved.

Time to tie this back into the struggle of making the decision to adopt that those who are experiencing infertility.


When I read articles on topics like IVF, the comments that make me the MOST angry are the ones that say anyone struggle with infertility should adopt because there are so many children who need homes. Is the fact there are many children who need homes false? No. But does that make it the responsibility of those struggling to have biological children? Absolutely not.

There's this weird stigma that I have observed that I can't wrap my mind around. The idea that it's somehow selfish to want biological children. After all, remember all of those children who need adopted? It's as though parts of society shun the idea of reproductive therapy when there are children who need parents. Why bring more children into our already overpopulated world?

There is nothing wrong or selfish about wanting biological children. (Conversely, there's nothing wrong with not wanting children... but that topic alone could take up an entire blog post). It's a natural animal (yes, we are animals) instinct - to continue our bloodline. And if a couple has tried and tried and tried to bring a child into the world, it's hard-wired into our genes.

This next bit isn't really easy for me to write. There are very few people who I have verbally expressed this to, but I'm hoping my perspective will give well-meaning individuals something to consider before they suggest adoption.

I'm an infertile adoptee who has (after multiple discussions with my husband) decided that adoption is not for me. My personal story plays heavily into this decision. I know it seems backwards... as an adoptee, why wouldn't I want to turn around and do the same?

Because I have seen and experienced the realities of adoption first-hand. I remember what I put my parents through. I remember how hard I struggled with my identity and self-worth. As an adult, I'm still working through my identity, self-worth, abandonment issues, and attachment issues. I have come a long way, but it has taken multiple years and therapists to get me to where I am today.

After years of wanting nothing more than to be called "mom", I know that if we adopt, there's a chance I'll be told "you're not my real mom". There will be questions about the biological parents. Questions that are natural and valid. Questions that are inevitable. I know because I asked questions. No matter how good of a life we provide, the desire for answers and a sense of closure will always exist. I know myself. And I know that there is no way after the pain and loss from a more than 5 year period of time I can handle taking on those questions. Not only that, I am being honest with myself and recognize that these questions will not only hurt as a reminder that if I adopt, I still didn't get to experience pregnancy. I don't get to look down and see my eyes or nose combined with my husband's smile and hair. Wounds that have taken years to heal would be ripped open. It's just not for me.

That's MY reason. But, to be honest, no one owes others an explanation as to why they would choose not to adopt. To anyone struggling with infertility who has heard the adoption suggestion or question over and over again... you do NOT have to share your reason unless you WANT to. Whatever your reason may be, I know it has been a topic that has weighed heavily on your heart many times. I have been there. And for some time, I felt guilty about the fact that it's not for me.

For the sake of what may be your curiosity as to why a couple would choose not to adopt, let me share a few other potential explanations.

If someone has seen negative pregnancy test after negative pregnancy test, experienced miscarriage or child loss, and/or has had reproductive therapy fail - that person has already been through the emotional (and potentially financial) ringer. There was a dream. And that dream was shattered.

Adoption isn't a simple solution by any means. And for couples who have already suffered disappointment, going through the adoption process does not guarantee that the process will be smooth. There is no guarantee that it will result in immediate placement. The biological mother could always change her mind. Another member of the child's family may step in. Many cases require fostering before adoption. In those instances, multiple court dates are typically involved. For a couple that has already experienced waiting and waiting only to have the rug pulled out from under them again, the prospect of adopting can be terrifying.

And none of that takes into account the financial aspect of adoption, the home studies, Some couples don't have the financial resources to begin with. Others may have already tapped out their financials undergoing fertility treatment.

Please do not misunderstand me. I think adoption is an absolutely beautiful and wonderful way to grow a family. I have my family because of adoption. I know and love families that have grown through adoption. But, for all of us... I am aware of the heartbreak that is there. Adoption is NOT a cure for infertility.

Adoption is wonderful, but it is not for everyone. And there is nothing wrong with that. Those who think otherwise have probably not been through the trenches of infertility, and I can understand why. It's hard to grasp the full magnitude of something you haven't experienced.

If you know someone struggling with infertility... please stop bringing up adoption.

If it gets brought up will we disown you or yell? Probably not. Will we feel jolted and shaken and possibly burst into tears after we part ways? Probably. Will we gently correct you? Maybe. While it may be a legitimate question, it's not a very supportive question.

The next time you want to ask about adoption? Try asking how you can support that person instead. It will make a world of difference.

Love,

The Infertile Adoptee

A New Decade - Finding the Grace to Move Forward

 

I have had this post on my mind for some time now, but I struggled with getting my thoughts out in a way that wasn't just a jumbled collection of the many things that have tugged at my heartstrings for the past several months.

I began the year thinking I would blog more. Be inspiring. Be motivating. Help others. Unfortunately, that never happened. It wasn't for a lack of content or ideas. It wasn't due to lack of time. It wasn't due to lack of motivation. Looking back on it now as I face another new year, I realize what held me back was doubt, fear, and self-loathing I had allowed to build up over a period of time.

I went into 2019 wanting to radiate a positive example - to be the light in the dark for someone. How could I possibly do that if I was in such a dark place? I felt like I was just repeating myself. I figured it was best to just keep quiet and force myself through the day-to-day survival. I was ashamed of still feeling hurt, angry, confused, abandoned, and dismissed. I didn't want to admit that my faith in God was completely non-existent - I had come to a point where I had essentially written Him off and wasn't on "speaking terms" with Him. If I couldn't say anything positive, I didn't want to say anything at all.

I realize now that doing so was a mistake. That I had allowed my life to be controlled by lies I had convinced myself to be truth. 

Now, some of the beliefs I have developed about myself were a result of past traumas from which I never fully healed. Add to that the chronic pain, health issues, failed IVF cycles, and instances of being treated poorly as a result of my health issues - it's a great recipe for compounding those negative thought patterns. It allowed them to grow and flourish rapidly, like weeds. I found myself suffocating.

In the spirit of the new year, I think it's time to come clean and admit where I have been this past year. It's time to break my silence, be honest, and start healing without allowing shame to weigh me down.

My endometriosis came back and I was constantly in pain.

My husband's grandmother passed away.

My chronic pain got worse, to the point where I was back on strong pain medication and couldn't work.

My endometriosis and pain got so bad, I ended up in psychiatric care due to active suicidal thoughts because I just wanted the pain to stop.

My work life got interrupted because I was incapable of working full days without suffering flare-ups.

My work life became strained and uncomfortable as I found myself being treated differently being on medical leave and part-time disability.

My family life suffered because I couldn't do something as simple as go and watch a softball game or go to the zoo without suffering a flare-up.

My family life suffered because I couldn't stand car rides without suffering 3-4 day long flare-ups after trips.

My social life suffered because I couldn't commit to plans.

My grandmother passed away.

My work life got to a point where I was so uncomfortable with how I felt I was perceived I decided it was time to pursue a new career path.

My search for a doctor locally to treat my endometriosis left me feeling frustrated and angry that no one was listening to me.

My car was totaled on Halloween - a day we struggle with anyway because it was our second cycle loss - because it snowed and I lost control of my vehicle on a slick patch.

My fifth surgery in a five year period happened more than 5 hours away from home.

My amount of hospitalizations ended up being more than I care to try to count.

My desire to go to church and connect with God was completely gone.

Now, I don't say all of those things because I'm looking for sympathy. There are a couple of reasons I have chosen to share them now.

One - I know I'm not the only one who has had a tough year. In fact, I'm willing to bet there are many out there who have had a worse year. And I want those people to know that they're not alone. And, if you are like me and found yourself at the end of 2019 wondering where on earth the year went and why you "allowed" yourself to curl up in fetal position and stay there, that you're not the only one who did that. I don't like admitting that's what happened to my year, but it did. And I can choose to let that shame carry with me into the new decade, or I can reflect on what happened, pick myself back up, and give it another shot. If you spent last year in a similar fashion as me - hiding out because you were embarrassed or ashamed of how you felt about yourself and/or your faith and/or your life - I want you to know that it's ok. I think had I recognized the anguish I was feeling, my struggles, and my pain - not just within myself, but outwardly and honestly - the healing process could have happened quicker. And that's an important lesson, I think. Just because we cannot see the silver lining doesn't mean what we have to say, our thoughts, or our feelings are invalid. It means we are human. And sharing those stories might just be what someone else needs to hear.

Two - out of many of those struggles listed, something absolutely beautiful has bloomed.

Sure, there are things I lost. But there is so much more on the horizon as a result.

I learned even more the importance of advocating for myself. You are your own best advocate. Believe in that. And if you need help? Please let me know and I'll give you some tips and a pep talk. If you don't speak up, you won't be heard.

I have made new connections. I have found that as I am more open about my struggles with endometriosis and infertility, others are sharing with me their stories. When I totaled my car, I ended up being taken by ambulance due to neck pain as a precaution. I'm not sure why, but I shared with the EMT the story of my struggle with endometriosis and our infertility issues. I was met with that person's story of their family's struggles with the same issues.

I became stronger mentally by recognizing I don't deserve to be treated poorly because of something I cannot help. I didn't ask to have endometriosis. I didn't ask for it to come back. It's not my fault, nor is my infertility. I stepped back from situations where I felt there was a lack of understanding - and, in some cases, borderline bullying and abuse. I realized I didn't have control over my medical condition, but I had control over how I would allow myself to be treated.

I took a huge leap of faith when my grandmother passed away and decided it was time to go back to school and finally go into education. She was a third grade teacher for most of her life. Losing her was a wake up call for me. Life is too short to be doing jobs I'm not passionate about. Not just that, but it gave me the courage to finally embrace what I believe I have been called to do with my life.


Now - as for my faith. We started going back to church towards the end of 2019. I had to force myself into it. But, I'm so glad I did. Each message not only brought me closer to wanting to rebuild my relationship with Christ, but made me realize I was exactly where He wanted me to be. While I can't recount every sermon topic, I can recall that each time, I was moved because it felt like it was a message I needed to hear at that time.

Most recently, my husband and I came across a song called "Scars". (You can listen to it here). The gist of the song is being thankful for the hardships we have endured because they have made us stronger in our faith and convictions. Not only that, they shape us into stronger people.

With that, we can choose to stay silent, or we can choose to speak our truths and struggles into the world and share how we got through them. And while it's not always a nice, neat, tidy path, we got there.

The sermon that Sunday - just a day or two later - was on "The Old You - Leaving the Past Behind". And that sermon is what inspired me to finally write again. Not because I think the past is some taboo, awful thing. Not because I'm abandoning "old" Kristy. But, because despite what happened in 2019, 2020 is here. And I get to decide if I just cling on to the past hurt, insecurity, and shame I have carried with me - or if I leave it behind me. That's not to say we'll ever forget the hurt, or that the hurt won't resurface. I embrace those parts of my past - those parts of me - because I wouldn't be who I am today without those struggles.

I have heard of people choosing words to represent their year. My word is grace. I'm giving myself grace. Grace to hurt. Grace to heal. Grace to celebrate to despite the hurt. Grace to hurt despite the blessings. Grace to make mistakes. Grace to share what's on my heart and stop censoring myself. Grace to free myself from shame. Grace to move on.

My hope for you this year is that you will also give yourself that same grace. I know it can be a struggle. I know you might be in a place where this sounds completely foreign and you think I'm full of it. I've been there. Which is why I often refrained from speaking out about my faith journey - I didn't want to offend anyone. I didn't want to alienate someone who was hurting because they were or are angry at God. I didn't want to bring down those whose faith is strong. I didn't want to hurt those whose faith had been shattered. So here it is - no matter what I share with you this year, I hope you give yourself grace to allow yourself to feel how YOU feel about it, without feeling ashamed. Shame is such an ugly thing that weighs us down and it is SO hard to shake. But, if you need it - I'm here for you.

So here's to 2020. A year of finding the grace to continue to move forward. Grace to be exactly where we are, free from shame, self-doubt, and judgement.

For the past year, I have asked others for prayer because I couldn't bear praying myself. This year, I want to do the same for you. Please reach out to me if there are prayers I can lift up for you.

Love,

Kristy

An Letter to My Grandma... Living with Grief

Since saying goodbye to Facebook, I had wondered just how far the reach of my posts will really go. And while this blog started out as support for infertility, of all the posts I have written, I hope this one reaches the most people.

This one is dedicated to my Grandma Maag. Someone who I wish I could describe in words. It wasn't until I knew I would never see her again in my earthly body that I fully appreciated how much she meant to me... and how much I feel as though I have let her down.

I was the odd duck in my family - I moved away. But, my grandma would occasionally send me these notes - just to let me know she was thinking about me.

Over the years, I collected these notes and cards. I loved seeing my grandma's handwriting. I'm grateful I have a piece of that - a piece of her - to keep forever.

I kept telling myself I wanted to write grandma a note. But, I worried she wouldn't understand. I was afraid she wouldn't know who I was. I worried it would have been a nuisance. My deepest regret now that my grandma is gone is that I never sent that note.

So here it goes - something that has been on my heart and that has been challenged to me to write a note to someone in honor of my grandma. And that person I have chosen is the very woman who has inspired me in ways yet to be seen.

Dear Grandma,

I can't believe more than a week ago we got the call here in our home to let us know God had called you home. I could sense it coming for probably a month. I know you could sense it coming, too. I so wish I could have been by your side. I know people told me your body was there, but you weren't the same grandma I remember. But I wish I would have been there so you could have felt my love along with everyone else's. Grandma...I hope you know how fiercely you were loved by us.

I still feel in a daze. Moments after I found out you were gone, I started frantically searching for my memories I know I have of you. I was able to find a couple of notes. I found a watch from our boat trip in Iowa. I can't remember what color you got, but I know we both got watches that day. I found the wallet you bought me in Italy - with a single dollar bill in it on which you wrote, "Keep Me and You'll Never Be Broke.". I never fully appreciated the life lessons you were teaching me - not to mention your sense of humor.

I feel guilty that you never got to know the little very well. But, she knew you. And in one of the goofiest of ways. You remember that thing you did at restaurants with the napkin? The three different characters? I taught that to the little years ago. And she still does it. We all still do it. And it still makes us laugh.

As I write this, I wear the ring you gave to me. I couldn't wear it for awhile because I burned the bejeezus out of my finger, but it's back on, now. I remember when I got the note from  you while I was in college asking if I would like it as a graduation gift. I was siting in an office doing my work for the residence hall I worked for.

Remember when we went to Europe and I tried to sleep in the tub because of your snoring? I think this was probably pre-CPAP. But, I would give anything to hear your snores again.

Grandma...I know you were in so much pain. And I learned you were in so much more pain than I ever realized. My heart breaks... because my body also wants to just give up a lot of days and I know I have begged God to take me.

I wish I could have been to you on this earth what your notes and letters were to me. I wish I could have helped you more.

I have so many happy memories with you - and a lot of them are random, but they're some of my favorites. Like, eating Cracklin' Oat Bran at your house. I'm pretty sure that's crappy for our bodies, but I think I'm going to get a box and have some in your memory.

I remember when you out of the blue asked me to go on a very short trip with you - a bus trip that had a stop in Peoria, so I joined you there. I wondered if it was something I should do - taking time off of work was difficult for me. But I knew even then that this would be the last chance I had to do this with you. My last trip with my LOL.

I remember after church service one Sunday you asked me if I wanted to go see Aida at the Fox. Grandma - to this day, that is one of my favorite musicals. I even purchased the soundtrack.

Going to the Muny with you inspired me to want to sing and act. I wanted to be on stage one day. And one of the letters I found was you encouraging me to pursue it.

I feel like I'm a rambling mess. I have so much on my mind and in my heart. The biggest and heaviest of which is how much I miss you and how many incredible memories I have with you.

I'm forever proud to be your favorite Raven-haired grandchild. 

I love you, Grandma. 

Kristy

"There was a little old lady who lived in a little old house..."

I asked my grandma after one of our losses how she maintained her faith after everything she endured. Losing her husband. Battling breast cancer. Losing her son. I figured if anyone would have that answer, she would. I wish I could recite exactly what she said. All I know is I was left in awe that despite it all, my grandma was telling me to continue to have faith in Him and trust His plan. I don't know that I've ever talked about that moment I had with my grandma.

Loss is a terrible thing. It sucks. It hurts. It can be paralyzing. But, it can kick us in the right direction. So here is my challenge to you, as I think my grandma has challenged me for the time I was ready to trust in His plan.

Write the note.

Audition for the show.

Make the phone call.

Pursue your calling.

Give back to your community.

Have faith with it seems like faith is the furthest possible thing.

Love fiercely.

Go on the vacation.

Take the time to have the experiences you want.

Even if you just pick one of this list... I hope you do. And I hope you share your experience with others.

Love,

K

The Never Ending Story: Living with Endo

My Endo story began OFFICIALLY in August 2015 during a diagnostic laparoscopy after about a month of chronic pain in my back and pelvis. As I was going under - a blur of doctors and nurses above me, wires everywhere, non-stop beeping noises... I remember my fearful thought that followed me the whole time I was in pain  - "What if they don't find anything? What if it's all in my head?".

Turns out not only was it NOT in my head... what they found was too complex for the surgeon and at that moment on the operating table... all I was going to get was a diagnosis and another surgery.

They found my pelvis frozen completely in place by adhesions caused by endometriosis. My ovaries were wrapped and stuck behind my uterus. Finally... and explanation for my pain. Followed by a whole host of questions as to why I didn't know about endometriosis sooner. But, that's a blog post for another day.

I had surgery again in November 2015. Four months later I was back in pain. Several ER visits, doctor appointments, and research later, we found another surgeon who was willing to take my case. This surgeon does the surgeries in two parts due to a protective coating she puts on organs to prevent scar tissue from forming. So in December 2017, I had two more surgeries - the first of which lasted 8.5 hours. My body told the same story as before - frozen pelvis, ovaries attached to the back of the uterus... but this time, the adhesions started pinching my bowels. I needed a bowel resection.

For 9 or so beautiful months... I lived in a normal world. I no longer felt like my body was attacking me constantly. I was able to make plans and keep them. I could travel without experiencing pain in my back and pelvis. I was no longer constantly aware of how my body felt. I thought I finally was as free from endometriosis as I could be thanks to an excision surgery (excision is the gold standard for treating endometriosis).

Unfortunately, this feeling didn't last forever. The return of the pain came on slowly for a couple of months. Just some random back or pelvic pain here or there. Some fatigue returning. Then, seemingly out of nowhere, the flare-ups returned.

What's a flare-up? It differs from patient to patient. For me, a flare-up feels like someone is squeezing my backbone and pelvic cavity to the point where I can barely move. When I do move, it feels like everything is being pulled - somehow, something in my pelvis feels like a tugging sensation any direction I move. This time around, I also have nausea. And lots of it. Zofran has become my best friend. I started taking B6 in the morning as a preventative measure. Doesn't matter, though. Because during a flare-up, chances are my already tired and sore body is hunched over the toilet, either full-out vomiting or dry heaving to the point my stomach muscles ache.

For a month and a half I was completely out of work because my flare-ups were lasting so long. My life felt like one, long, non-stop, stupid flare-up that wouldn't go away. I tried to push through the pain and tell myself that I'm going to have to learn to live with it. That only made things worse.

Things got so bad I seriously considered ending my life. By seriously I mean I ended up in the hospital and was admitted. The pain had gotten so bad, doctors were brushing me off, and it felt like there was absolutely no end in sight to my misery.

I was put on a nerve-blocker during my absolutely HORRENDOUS stay in the Psychiatric Unit. It seemed to help with my day-to-day pain. It didn't help at all with the flare-ups.

I pushed myself to go back to work. My doctor decided part-time was best to start. I wasn't really ready. I didn't feel like my pain was really under control enough to go back. But, I was tired of feeling like a burden to others, so I went back to work.

After a week of part-time, I pushed myself even harder and convinced myself and my doctor that I was ready to go back to full-time. I wasn't, but I didn't want my husband to worry about me losing my job, I didn't want to let down my team, and I didn't want keep inconveniencing my coworkers.

The week I went back full-time, I ended up in the ER with bad pelvic pain on my left-hand side and uncontrollable nausea. Zofran wasn't touching it. I had taken B6 that morning. I didn't think I could keep a pain pill down. Earlier in the week, I also had some pretty intense flare-ups. But, I did everything I could to power through them and fake it until I made it through the day, even though every part of my body - especially my back and pelvis - wanted to shrivel up and die.

As part of a recommendation from an excision specialist during a phone consult for a second opinion, my nerve-blocker (Lyrica) was doubled and I was put on a suppository that contains Valium and Baclofen. I had already started some physical therapy after a recommendation from one of the MANY doctors I have seen this time around.

During all of this, so far, nothing has changed except the "good" days where my baseline pain is now a 1-2 instead of a 3-4. Progress, I suppose.

Since I experienced increased flare-ups and I had yet another ER visit this go around, I was medically advised to go back to part-time at work. I know that's what my body needs. I've been told I need to take care of myself. But, when I feel like I'm letting other people down AND I'm causing extra work for others... it feels super crappy.

Not only that, I feel judgement. I feel judged. I feel like people look at me - a seemingly healthy individual - and wonder why I don't just suck it up and deal with it.

I hate that so much. If they only knew the level of pain I endure on a daily basis. If they only knew how often I've cried, how often I've missed family events, how often I have to spend my weekends doing ABSOLUTELY NOTHING in order to try to recharge for the next week AND try to avoid anything that would cause the flare-ups to happen or worsen, how I have had to choose to not go see my family that lives 3 hours away because the trip would put me into misery... maybe they wouldn't judge me so harshly. Or maybe they would.

I'm working on getting to the Mayo Clinic next. I'm so, so sick of dealing with being sick constantly. I'm tired of messing around, running in circles and getting nowhere.

Endometriosis sucks. That's all there is to it. It feels like this story truly began in Junior High/High School... when I would take 3 ibuprofen a day for days leading up to when my period started. Where I was taking 3-4 ibuprofen at a time and prayed for relief. A time when I thought my pain was "normal". In college, I had the option of not going to class on those days. And I chose that option and would sleep. Because sleep is when I wouldn't feel pain.

There is no cure for endometriosis. So for me - and women like me - this journey might never truly end. We may get some relief if we are treated properly, but sadly, many women don't get the proper care due to the lack of providers that TRULY understand the disease and how to treat it. (That is a whole different blog post for a different day - and frankly one I'd likely avoid in order to not offend any providers.).

I hope one day I won't have to live with it as much. But until then... this remains my seemingly ongoing battle for answers, relief, and treatment.

Kristy

I'm Sick...

As you may know from previous blog posts, I have been battling endometriosis. I was officially diagnosed in 2015. I have had 4 surgeries in less than 5 years related to the disease. My last surgery was in December of 2017. Unfortunately, all of the symptoms and pain point to the fact that despite an 8.5 hour excision surgery, the endometriosis is back.

It's an invisible illness, which means I look normal, but on the inside, I feel like I'm being ripped apart.

I wrote this post on Facebook and have been meaning to get it up on this blog as it IS related to infertility. (But it also goes along with the theme that this page is no longer JUST for infertility - still working on changing up the description, main photo, etc.). And now - with the pain back in full-force and feeling judged and shamed for my invisible illness... I have decided I really need to get this out there.

Awhile ago, I joined a couple of endometriosis support groups on Facebook. After seeing more than one post from fellow warriors wanting to just call it quits... I'm angry and sick. At the time I wrote my original Facebook post about this in June, I was at that point, too. The point where I felt there was no end in sight and death was a better option than living one more moment on this earth with the pain.

I'm sick... that for these 1 in 10 women, it comes down to the thought of suicide or enduring another day of this highly misunderstood illness.

I'm sick... because the sad thing is that it isn't always the pain that pushes endometriosis patients to the dangerous edge of wanting to choose death over life. The pain that has us begging for death - not caused by our own hands, but just begging God to let us die.

I'm sick... sick of the pain that lands us in the emergency room - knowing full well we could be treated like someone seeking pain-killers to get a high and not a patient in so much pain that we take that risk of being treated poorly in hopes of being treated like a human being in so much pain, the ER felt like the only option.

I'm sick... of the real world situations we face. Like being told to "suck it up", "it's just bad cramps", it's in your head", by friends, family, and even worse - doctors.

I'm sick... of seeking medical care and being brushed off time and time again by doctors who aren't educated enough about the complexities of endometriosis. Many women go 7 or more years before receiving a diagnosis. And I'm sick of this being acceptable.

I'm sick... of finally finding a doctor I like and having insurance deny the procedure that is needed.

I'm sick... of being unable to work due to the pain.

I'm sick of feeling judged for not being able to work - whether it's just in my head or I'm truly being judged.

I'm sick... of worrying about whether or not this disease is going to prevent me from providing for my family.

I'm sick... of missing events and not being able to commit to anything due to the unpredictability of flare-ups.

I'm sick... of feeling anxious and depressed or seeing my existing depression and anxiety worsen because I'm unable work, socialize, or make plans.

I'm sick... of the exhaustion I feel from being in constant pain.

I'm sick... of not being able to be intimate with my partner because of the pain it causes.

I'm sick... of feeling like a constant burden to my family, to my friends, and to my coworkers.

I'm sick... of feeling like I owe the world an explanation. Whether it's an explanation for why I can't do something or explaining for the millionth time my pain.

I'm sick... of feeling invalidated by so many people - including doctors.

I'm sick... of constantly having medical debt.

I'm sick... of letting down my bonus daughter because I sometimes can't do things or be at things because of the pain.

I'm sick... of missing events with family.

I'm sick... of using all  of my time off from work not for vacation, but for doctor appointment after doctor appointment and time off due to the worsening of my symptoms.

I'm sick... because we could do better about education and treatment - but we don't. Endometriosis is so misunderstood. It can only be definitively diagnosed through a surgical laparoscopy. Hormone suppressants like birth control, Lupron, and the new drug Orlissa, only mask the symptoms. Certain treatments used long-term, like Lupron, can cause long-term damage, including osteoporosis. It's not JUST retrograde menstruation. A hysterectomy is no certain cure - in fact, the only time you might find relief is if (1) you have adenomyosis where there are growths INSIDE the uterus or (2) your surgery was performed by an excision specialist who ALSO excised any endometriosis in your body. Endometriosis feeds off of estrogen - estrogen which the disease itself can create (interesting, huh?). Endometriosis doesn't always just involve the uterus, ovaries, Fallopian tubes. It can impact your bowels, and bladder. In more rare and severe cases, it can involve your diaphragm and/or lungs (thoracic endometriosis).

I'm sick... sick and tired of screaming (not literally... yet), begging for help, only to be brushed off over and over and over again. To me, that's worse than the physical pain, even on the worst of days.

And I'm not the only one who is sick of endometriosis.

If this speaks to you - or if you think it may speak to someone you know - please share this post. Help validate your own feelings or someone else's.

I'll share my latest Endo journey in a future blog post.

For now - to my fellow warriors, please reach out to me if you need support and validation. <3

Love,

K

The Beauty of the Lotus

I fell in love with the Lotus flower and the concept of the Lotus when a fellow warrior shared her story. The story about how the lotus blooms and grows out of murk and mud. There are many stories about the lotus flower and I know it is symbolic to many people around the world, especially in Buddhist culture.

While certain colors of lotus flowers have special meaning, to me, the beauty comes from the fact that these flowers blossom out of seemingly impossible conditions. While they are gorgeous flowers when they bloom, you cannot see what's beneath the surface. What is visible to us has roots in something dark and dreary.

This blog has served as an outlet for me to share our infertility story. To talk about our particular journey and share what has helped or hurt. To bring light to the topic that is still pretty taboo in our society even though 1 in 8 couples face it.

However, I believe we are at a place where our ongoing journey to add to our family has come to a close. We have a couple of options we have discussed - but none of them involve treatment to try to achieve biological children.

For some time now, it has become a vision of mine to expand and evolve what the Little Lotus Project represents. I want it to represent more than infertility. I want it to include more than just my personal stories and invite guest bloggers to the page.

The hope - and increasingly major dream of mine - is to help encourage and facilitate having open dialogue about the "muddiness" in our lives that is currently or already been overcome. I want us to talk about the difficult situations life brings - both the battles that have been overcome and those that are still being fought before you can "bloom".

While it's TERRIFYING to share our stories, doing so has the potential of not only providing hope, encouragement, resources, and education - but it could also give someone else who reads our stories the much-needed validation they are looking for.

Mental health disorders, death, divorce, illness, chronic illness, loss of a job, and more - these are the things I hope we can share here.

I will be looking for guest bloggers. You don't have to be a professional writer. You just need an open heart and mind and a passion for sharing your journey in hopes of helping others.

If you would like to be a guest blogger, know someone who would want to be a guest blogger, or have a topic you're interested in me covering, please email me.

You can also find us on Facebook and soon you will be able to find us on Instagram.

It is my dream to see this project grow into something beautiful. To see the ultimate lotus. The lotus born from the murk of our collective struggles. The lotus born from our collective strength and perseverance. The lotus born from us coming together to bloom into beauty.

I am so excited to see where this blog goes. And I am even more excited you're along for the journey.

Love,

Kristy
 

Grateful and Grieving: A Message for Mother's Day

It's impossible to miss or avoid this time of year.

Radio and television advertisements selling the perfect gift for mom.  Cards, flowers, balloons, and gifts in every store with "Mom" splashed across practically everything.  Facebook posts from businesses with contests for Mom, more advertisements for gifts for mom, and moms posting about their children.

And for those who may find Mother's Day one of the most painful days of the year... it's like having salt poured into an open wound over and over and over again.

Yet, it's not always just black and white when it comes to whether or not you grieve on Mother's Day. There's a lot of complexities involved.  I'll get to that in a moment.

One of my favorite fertility blogger, author, and speaker, Justine Froelker, talks about what she calls the "permission of the And".  You can learn more about Justine and her work here (I definitely recommend following her if you're an infertility warrior).  Justine's concept of the permission of the "And" is what has inspired this post.


Many of us DO in fact have a reason to celebrate Mother's Day in some way, shape, or form.  Whether that means having a mom, being a mom, or being an expecting mom.  That doesn't mean that behind your reasons for still being able to celebrate that there isn't some level of grief associated with Mother's Day.  In fact, I'm willing to bet if you're reading this, you have a reason you hurt when this day filled for many with cards, flowers, and a special breakfast rolls around.

I often have a lot of friends and family on my heart when I think of Mother's Day and the others who may also be enduring a difficult day, or even weeks leading up to and following, Mother's Day.

So, this is for you... whether you're a family member, close friend, acquaintance, or stranger.

To the one who has a mom no longer in this earthly realm... I'm sorry you're grieving on this day.  I know you're grateful for your memories and the time you got to spend with your mother.  Yet, you grieve that she is not here to celebrate and shower with love.

To the one who has a mom who is still living but not in your life anymore, for whatever reason... I'm sorry you're grieving on this day.  You may still long for that relationship you never had or the relationship that fell apart.  You, too, have suffered loss.  And, even if you have babies of your own now, that doesn't mean you can't still feel the heartache of feeling terribly hurt and alone.

To the one who has a mom who you have a relationship with but lives far away or who you can't see on Mother's Day... I'm sorry you're grieving on this day.  Even though you are grateful and happy your mom is still in your life, it doesn't mean you're not allowed to feel that ache of not being able to hug your mom today or that you miss out on celebrating with her.

To the one who IS a momma, but you cannot be with your children for whatever reason on Mother's Day... I'm sorry you're grieving.  It's ok to be grateful for the children you have while simultaneously feeling empty because you cannot hold them in your arms - no matter how young or old.

To the moms who are empty-nesters... who perhaps have been told you are no longer really a mom because you're done raising your children, I'm sorry you're grieving on this day.  You will ALWAYS be a mom, whether your children are independent or not.  But, you're allowed to feel grateful for the time you got to spend with your children and raise them while also feeling a sense of loss that comes from no longer doing those mom things you did when they were young.

To the moms who have children, but have also have babies in heaven... I cannot even imagine how torn you feel.  And, I'm sorry you're grieving on this day.  While I know you are grateful to have your child or children to celebrate with, to shower you with love, cards, and burnt toast... there's that part of you that aches for the babies that should also be here celebrating this day with you.

To the moms who are holding your foster babies or adopted babies... Today your emotions are probably mixed.  You know the sacrifice another mother made so you could hold your sweet child.  Or maybe you know the horrendous conditions your sweet angel has endured and you want nothing more than to know for certain you can protect him or her forever.  So, though you may celebrate with the traditional Mother's Day cards and flowers, as you sit there feeling blessed and love, part of you aches for the birth mother, and I'm sorry that brings you grief on this day. 

To the adoptees, whether you knew your birth mother briefly or not at all... I understand what you're feeling.  I hope that, like me, you grew up in an amazing, loving, and supportive home.  And while you celebrate your mom - the one who raised you, dried your tears, taught you to believe in yourself, and loved you unconditionally... a part of you feels anger, hurt, loss, or all three when thinking about your biological mother.  And, I'm sorry you, too, are grieving on this day.

To the stepmoms out there... who know that no matter what you do, sacrifice, give, care, and love your stepchild or children like you would or do your own, you are not your stepchild's mother...  It's a tough role to play, especially if your stepchildren don't care for you and make a point to show that.  Or, if you're lucky, your stepchildren love you right back and you get to see a glimpse of Mother's Day through your role as a stepmom.  It's having one foot in the door and the other out - you may get to celebrate, but having the feeling that you don't deserve this celebration, as you're not truly mom. I'm sorry you're grieving on this day.

To the women who wish desperately they got to celebrate this day as a mom... boy, do I feel your pain.  There's honestly no happy side to this one.  You thought you'd be celebrating your first Mother's Day... or maybe you're remember that this should be your second Mother's Day... maybe 3rd... 4th... and so it goes on.  For years, you've held out hope, told yourself, "maybe next year", only for this day to roll around again.  And although you may have your mom in your life that you celebrate or mother-in-laws to celebrate... the emptiness you feel today is magnified.  I'm sorry you're grieving on this day.

Whether you're 90% happy / 10 % grieving, 50% happy / 50% grieving, or 100% grieving... remember to do something for yourself today.  Step away for five minutes.  Take a long shower.  Go completely off social media.  And while I know it's not always possible, and maybe you can't accomplish it today, but promise me you'll do something within the week to take care of yourself.  Allow that grief to wash over you in waves.  Don't fight it.  And while those waves aren't crashing so hard, take that time to focus on steps towards finding a place of relief.  Trust me when I say ignoring self-care lands you in a place much deeper and darker than if you were to take 15 minutes to find your sanity.

I hope this Mother's Day you're able to allow yourself to grieve while being grateful... not allowing those two feelings to spend the entire time fighting inside of you, against one another. 

Consider this your permission slip to feel ALL of the feelings, without the guilt.  Because I can promise you I'll be doing exactly that.

Love,

Kristy