Here We Go… Again.

I’ve been trying to put into words how I feel about this upcoming surgery, and I just haven’t been able to fully wrap my head around it yet. 5 1/2 yrs ago I walked into that hospital with my new husband of only 9 months, my mom and my grandma. I fell to my knees in tears as we approached the entrance. There was no way I was strong enough to survive this. As they were transferring me to the surgery table I remember screaming that I couldn’t do it, that I didn’t want the surgery, that I didn’t care what that meant and to please let me leave. I can remember the nurses voice as if it was yesterday “You’re ok sweetheart, we’re going to take good care of you. You’re going to get your life back“.

There is absolutely no way to explain what it feels like to have your worst fear come true. It’s soul shattering. And for the last 5 1/2 yrs I have gone through every emotion, I’ve gone over and over and over what I could have done differently. I’ve questioned the doctors, I’ve blamed them. I’ve questioned myself, I’ve blamed me. I’ve hated my body, resented it in ways I never had considered possible. I’ve sabotaged it. I’ve allowed that loss to consume me. At times it truly felt that my heart was turning to stone. I started to not even recognize myself when I looked in the mirror. I’ve gotten out of bed to face each day, most days certain that my heart was literally in pieces inside my chest.

The last year I have gotten to, what I believe is, a much healthier place with my grief. I’ve found a way to make room for it. I’ve learned it’s ok to feel it and, maybe more importantly, I’m leaning it’s also ok if I don’t. That it doesn’t mean I didn’t want to be a mother. It just means my heart is learning how to feel happiness and joy in moments that, before, would have broken me.

I hit my 5 yr Hyster-versary with hope. I’d done every. single. thing. I was told to do. I refused HRT so as to not feed the Endo that they had to leave because it was in places that made it too dangerous to remove. I’d also suffered the consequences of that… Surgical menopause has been an adventure to say the least. But it would be worth it, wouldn’t it? I’d made it to this milestone and that meant I really did have a chance that Endometriosis was no longer going to run my life.

Within weeks of that milestone, I knew something was wrong. In the months following I quickly went backwards in my fight against this disease. My body has once again betrayed me. I am truly at a loss and I absolutely was not prepared, emotionally or mentally, to hear that ugly word again… surgery. And now here we are, 2 days til Surgery #9.

I wasn’t naive, I knew that there would always be a chance of another surgery. But hitting my 5 year mark really made me feel safe. I felt like maybe, just maybe, the hysterectomy really did make a difference. My biggest fear since I was 12 yrs old was that the unbearable pain that was creeping into my life would one day render me childless, my body unable to carry the children I’d dreamed of having since I was a little girl. That I would never, ever feel the miracle of my child growing beneath my heart. That I would live a life removed from all those around me. That I would be the only member left in a club I wanted nothing to do with. And on August 12, 2010, that fear came true.

My biggest fear since then? That the stupid hysterectomy, which I was told was my only option at that point in my health journey, would at some point be rendered meaningless. That one day I would once again live my life each day held captive by a body that hated me, beaten by a disease I could not control.

And here we are… again.

So on Thursday my mom and I went and did our pre-surgery shopping spree, a pre-surgery tradition of ours. Yesterday, my sister-in-laws and I got some R&R with a facial, back facial and pedicure. I may or may not have chosen the brightest and most glittery nail polish they had. Why? Because bright and glittery toes are a surgery must. As are cute new pajama’s.

Tomorrow I will wake up and pack my hospital bag, finish last minute errands, go visit Duke for a kiss, cuddle extra with Kumo and do the dreaded bowel prep (TMI?). And on Tuesday I will walk back into the hospital, put on that hospital gown, get an IV and be wheeled to the OR. They will ask me to count backwards from 100, I’ll swear that I can make it to zero. I’ll be out cold by 94. My surgeon will make 4 cuts, and insert his “hands”… he’ll see what this disease has done to my body. He’ll see the scar tissue, the adhesions. He’ll see the ovary that, against all odds, regenerated itself. He’ll cut and scrape and cauterize. He’ll do what he’s trained to do, he’ll do what I’ve trusted him to do and in those moments my future will be in his hands completely.

And then I’ll wake up. And I’ll go to battle with this disease again.

 

I’m not giving up Endo. You have not stolen my strength. You have not stolen my fight. Everything you’ve done to me and taken from me has only made me stronger. I will get up every day, I will have a smile on my face and I will live a life I love.

So here we go again, just you and me. Only this time…

I WIN. 

 

Disappear

Have you ever wanted to disappear? Pack a bag and drive for as long as you can… be one of those characters in a movie where you wind up in a beautiful place that teaches you how to rediscover your soul? I want to disappear. I NEED to. But I can’t.

I’m being forced to face the fact that who I am is no one close to who I thought I would be. And no amount of time is going to change that. I have to change that, but even then, I can only change so much. I can never change the fact that I won’t be a mother to a child I carried, a child that has my husbands ambition or my “amazing” eyes (as so many call them). That is one thing I can’t change. And I’m stuck in this black hole, where I’m trying to find the strength to be okay with that, while rediscovering who I can possibly be without that title – when that title describes everything I want to be. And it doesn’t matter if I discover it now, or if I discover it in 10 years, or 20. Because I will never have that title. And time will go on anyways.

Time will go on, and unless I find a way to break out of this, I will slowly become the person I never wanted to be. I’m looking for escapes, anything to take me away from this reality. I’m craving them. I just want to forget what I’ve lost, I want to forget that I can’t change it, that nothing can make it better. And I’m wondering when that happened, because I was ok once. I was heartbroken, but I was ok. And now I’m not. And I don’t know how to ever be again. I don’t want to talk, I don’t want to listen, I don’t want to be around anyone who knows what I’ve lost. I want to disappear, I want to go to a place where no one knows how I’ve failed everyone I love, where no one knows how I’ve failed myself…. and I want to start over.

I used to be strong, full of life… even brave. I used to be full of fight. Where am I? Where did I go? And how do I find me again?

But most important, how did I loose me?

Always an Aunt

Well, it’s happened. My little sister will be a mom before I am. And instead of her being able to call me and hear about all the ways to simultaneously feed baby while feeding herself, she’ll be able to call me for absolutely nothing.

Bless my sisters heart, she’s been so sweet about it all.. when she announced her engagement 2.5 years ago, we sat on the guest bedroom bed in our dads house and talked about what the future would hold. I asked her in that moment to please call me herself when her and her new hubby got the news. It took another year or two for me to realize just how selfish of a request that was. But call me she did. And while I was happy for her, my heart broke.

When did life become so backward? When did my 9 year younger sister pass me in the timeline of life? I can’t make sense of it.

But I’m not upset with her, I’m not bitter towards her, I hold absolutely no resentment. How unfair would that be if I did? I am genuinely overjoyed for her. She has been very sensitive, and I hate that she has to be. I hate that I need her to be. She’s been gentle, and patient, and far more understanding than anyone else ever has been. She’s been a sister… not a younger sister, but a sister. She somehow has managed to take this unprecedented moment in her life, and think of me. She’ll never know what that’s done for my heart.

She was incredibly ill… loosing over 30 lbs in her first trimester. Luckily, the 2nd trimester seems to have brought some relief for both her and the baby, and her sweet husband who undoubtedly must be so overwhelmed.

I received a text from her several weeks ago… she wants me to come up and stay with her after the baby is born. She wants me involved… if I want to be, if I can be. At first I thought that there was no way I could do that. There’s no way I’m strong enough to live that experience through her. But as I’ve given it time, I’ve become excited for the possibility of being there for her in those moments. I know it will be hard, I know there will be tender moments that will remind of exactly what I’ll never have… but there will be tender moments that will remind me of exactly what I do have too.

I’m so grateful my sister has been so aware of me. No one has ever been that way with me through their pregnancies. My fear is that it will take something away from her to be that way. My hope is that it will bring us closer.. and I think it will.

Cry Baby Cry

I have been SO emotional lately. I do not cry, I am not a crier. It takes a lot for me to show that kind of emotion in front of anyone. But wowzers… even the smallest reminder can open the flood gates. I don’t understand why, I don’t understand how to stop it, I don’t understand how to manage it.

There is a white glider chair that my mom found several years ago, before my surgery. She brought it home thinking it was something we could refinish once I was pregnant. It has sat in her garage or storage unit for all this time. My mom recently moved and there was no room for things she didn’t need. I told her to find the chair a new home, there was no reason to keep it any longer. No amount of time is going to change what is. So she did… she gave it to a good, long-time friend of ours. When I went to her place on the second day of her move, she told me she had given it to this friend, who was there as well. They both asked if that was okay. I said yes, and then out of no where I started crying. Not like a tear here or there, but full out crying. I don’t know what came over me. I DON’T ACT LIKE THIS. *sigh*

A Moment of Peace

Today, of all days, I had my first day in a long time that I was in only minimal pain. I thought it was interesting timing. Considering my rant from yesterday. I’m thankful for it though, and I won’t begrudge it. I actually made the bed, showered, put foundation and mascara on my face (I even did my eyeliner! BIG DAY I tell ya!), put on jeans and a cute top, and then turned OFF the TV, put my iPod onto it’s speaker, turned on my music and went about going through the piles and piles that have made their home on my desk. My husband looked at me shocked, I don’t think he recognized me LOL. But while I was going through the piles of receipts and paperwork and filing bills and tossing away coupons for the shopping trips I never felt good enough to take, I looked up and saw a quote that my sweet Grandma had printed up for me the week before my hysterectomy…

“I hope that you recognize and believe in the promises: There is a green pasture for each and every one of us. And do not be deceived into thinking that even though there are different and seemingly unfair paths in life, that in the end we all get the same pasture. Your pasture will compensate for your path, and my pasture will compensate for my path… when from the windows of Heaven, there will be a pouring forth of blessings that directly heal and repay for every individual pain and sacrifice you are experiencing… Whatever blessing you have gone without will be made up to you in divine and glorious fashion. I give you every assurance, they will be made up to you to the point where you will not be confident that God treated you fairly, but embarrassed that he treated you so very generously.” from “A Quiet Heart” by Patricia T. Holland.

In that moment, I felt peace.

I don’t want to drag out this healing, I don’t want to be bouncing around with my emotions, I don’t want my loved ones to constantly be worried about me. I just want to be at peace. I want to be able to realize that my life will be just my husband and I – and that’s ok, and that’s enough, and that is a blessed life. And at the same time, I’m scared to feel okay with that.. because maybe by doing so, it means I never truly wanted to be a mother. Maybe if I can get to a place where I can be okay with not being a mother, everything I ever thought I wanted was a lie. Because how could someone who wanted something so desperately, ever be ok and at peace with not having it? I feel like I’m stuck in this limbo, where no matter what I feel, it’s wrong.

I have never been a crier, ever. And yet the past several months, as I’ve lost any handle on this I had, I cry daily. The smallest reminder makes me emotional. I’ve shown tears to people who have never seen me anything but smiley and positive. The truth is, I don’t know how to do this. I don’t know how to be a loving aunt, a supportive sister and sister in law, an excited family member, when each little reminder breaks me. I just sincerely don’t know how to do this.

Stages of Grief

They say if you reach the “acceptance” stage of grief, you’ve been awarded a gift not allowed to many. I’m not sure it’s always a gift.

I feel like I went through the Acceptance Stage of grief immediately following my hysterectomy. I was SO determined to handle it with strength and maturity that I didn’t even allow myself to go about it any other way. I never gave thought that there were any other options. And I definitely never gave thought to the fact that eventually, and most likely without warning, I would HAVE to go through all the stages I was so adamant about skipping over. I’m going through those stages now.

The truth is, I’m bitter. I’m downright pissed off. I feel like I could trash our entire house like they do in the movies, you know, when they wipe clean an entire shelf with one passionate swoop. I want to scream, and yell, and cry and punch things and have a full out tantrum. Part of feels I deserve that, part of me feels it’s beneath me.

I was honest last night with a family member that I’m bitter. It’s not something I’ve admitted to anyone other than my husband and my mom. But last night I couldn’t find it within myself to lie anymore. So I was honest… I received an understanding look, and the question “are you bitter towards those that ARE or CAN be pregnant?” And the truth? No. I’m not bitter towards the woman I see experiencing this miracle. I’m not bitter towards them at all. I’m bitter that the light I saw in my fathers eyes when I asked him if he was excited that my little sister was pregnant, will never be a light that I put there. I’m bitter that my mother and grandmother will never experience the pure elation of watching me open my baby shower gifts, that we’ll never take a 4 generation picture, that my mom will never look at me and say “My baby is having a baby.” I’m bitter that the joy I see in my husbands eyes when he connects with a child will never be because he’s connecting with OUR child. And I’m bitter that me feeling these things, makes those I love feel like they have to hide their excitement or pain in order to save me from the ensured stab to the heart that happens to me afterward. I hate that my loved ones feel they have to walk on egg-shells. I hate that I do too.

I’m bitter that I had that stupid surgery to get my life back, and instead I’m stuck on the couch every single day – faking smiles to those I interact with, watching Criminal Minds and Law & Order: SVU reruns from the time I wake up to the time I go to bed. I’m bitter that on any given day I will have no idea what the weather is like outside, and that fresh air seems foreign to me on those days. I’m bitter that no matter how hard I try to stay warm once the weather turns cold, it chills me to the bone and I have to wrap myself in so many blankets that I’m sweating before my bones ever feel warm. I’m bitter that my feet aren’t swollen because I’m pregnant, that I’m not nauseated because I’m pregnant, that I’m not exhausted and fatigued constantly because I’m pregnant. I’m not pregnant because I’m sick. And I am SO PISSED OFF that sentence applies to me.

So what happens when you regress in the grieving process? What happens when that peace that everything would work out how it should, is overcome by overwhelming heartbreak? Where am I supposed to go from here? I guess that’s the bummer about starting at the top, the only way to go is down.

Mothers Day 2014

Well, another Mother’s Day has come and gone. I survived, so that’s a plus =) No, really, in all honesty, I was humbled this Mothers Day… I was overwhelmed by the number of women (Mothers!) who took time away from themselves to let me know I was in their thoughts… I received phone calls, texts, FB comments & private messages, cards. And each one helped to put some putty over the holes in my heart… I know thats a cheesy analogy, but that’s how it felt. 

I’m very, very, incredibly blessed to have been given some amazing women in my life. A mother, a grandmother, aunts, cousins, friends… who’ve really circled round me the last 4 years and gone above and beyond to tell me how much I’m loved. It’s almost like they organized this “support group” for me LOL, it’s crazy to say, but I swear sometimes it’s that perfect of timing!  I will be honest in saying that each year, the wound feels a little bit bigger. I had a harder time holding back my tears this year, and I think because I did hold them, I am even more emotional today. I spend so much time trying to NOT be sad, that when a day comes that I could justify it, my heart almost screams for me to take it and allow it to release all the heartbreak and pain that has compiled while I’ve been busy just trying to live. 

Having so many amazing women in my life does help me to take my mind off of me as well. I try to really focus on these women, instead of on my pain, so that I can be genuine in my celebrations and declarations of love & gratitude, because I truly am sincere in those feelings towards them and I would never want my heartbreak to overshadow THEIR day. 

My cousins wife, who has 3 beautiful children, recently went through her youngest being called back to be with Heavenly Father after only 42 short days here on Earth. She sent me this today… 

“Both God the Father and Adam called Eve “the mother of all living”–and they did so before she ever bore a child. Like Eve, our motherhood began before we were born. Just as worthy men were foreordained to hold the priesthood in mortality, righteous women were endowed pre-mortally with the privilege of motherhood. Motherhood is more than bearing children, though it is certainly that. It is the essence of who we are as women. It defines our very identity, our divine stature and nature, and the unique traits our Father gave us.” -Sheri Dew

I’m never been a scripture buff, and lets be honest, I never will be. I open the scriptures and my brain goes straight to mush, I retain absolutely nothing that I’ve read and walk away overwhelmingly frustrated. So I really don’t “use” them much, but I do love quotes, especially from those who understand what this feels like. Sheri Dew is the CEO of Deseret Book, a well distinguished business woman… she’s also never been married, and never had her own children, and she’s well into her middle age years. So a quote from her, is one that I was open to reading – somehow my cousins wife must have known this, and I’m so grateful she listened to the promptings that told her to share it with me. Her taking the time to do so, when she most certainly was working through her own emotions, humbled me greatly. 

If you have someone in your life that is going through this type of struggle… please don’t hesitate to reach out to them on these hard days. Some of us make it look easy to just slap on a smile and nod at the appropriate times, some of us can genuinely engage in conversation and yet the moment her mind wanders she’s right back to the heartbreak, some of us aren’t able to do either of these and find it best for to stay home and leave the celebrating to their loved ones where their solemn mood can’t interfere with the festivities. Whatever type of woman you have in your life, please remember that it’s all about survival. You may think she’s feeling solid, but I assure you, letting her know she’s loved today is a gift that would be immeasurable to her. 

My FIRST 29th Birthday

On Tues, I turned 29.  I keep joking that it’s just my FIRST 29th birthday… because lets all be honest, no one WANTS to admit when they’ve officially entered their 30’s. LOL.

I was really blessed in that my body stayed under control almost all day. There were a few hours in the middle of the day that I had to just stop and lay on the couch, take my pills, and breath. But then the pain subsided a bit and I was able to put a smile on my face and keep celebrating my day. I was so grateful for that.

Usually, the fact that I’ve turned another year older and I’m still childless, paralyzes me. This year I’ve been so busy just trying to be, just trying to exist, that there hasn’t been time to let that thought come in and take residence. I’m grateful for that too.

I’ve been really struggling with being positive since the issue with my medication. I’m usually very capable of putting a smile on my face and to continue moving forward, regardless of how bad the pain is or how icky I’m feeling. But since that incident, it’s just been really hard to have hope that things will ever be better. Maybe it’s because the one thing that’s supposed to help me feel better, made me feel so horrible and put me in such a bad place… so now I feel like if the one thing that’s supposed to help me, hurts me, what hope is there?

I’m embarrassed and ashamed that I’m struggling with this. I have always felt that if nothing else, others can look at me and say “she never complained, she was always happy” and because of this, others looked at me and saw strength. This has always given ME strength. But now people can’t say that, I don’t feel strong and I don’t see strength when I look at myself in the mirror anymore. Even though I’ve always struggled with my self esteem and feeling confident in myself, body image-wise, I have always seen strength when I’ve look at myself. I want to see that again, but I have no idea how to get back to that place. That place was nice.

I’m Grasping…

My life is a blessed one, I know this. I have so many things that others pray for, beg for, would die for. I have always taken pride in my ability to make that conscious choice every morning to focus more on these things, than on the rest of it. Even with this blog, there have been times where I haven’t posted for months, simply because I haven’t wanted to allow myself to go to that place. It’s a scary place to go, and one that I’ll only allow myself to go if I know I have the strength to get out of.

But here’s the thing… when people ask me how I’m doing, I answer “Great!”… when people ask me how I’m feeling, I answer “Good!” I’ve always considered myself an honest person, not an honest to a fault type person, but an honest as it’s needed type person. You know the difference. My husband is an honest to a fault type person, he’ll tell you the truth even if you have no desire to hear it. Whereas I’m the honest as needed type person, I’ll never lie, but if telling the whole truth will cause a hurt feeling, I’ll bypass it. It’s because of this that I’ve always felt it unnecessary to be honest about how I’m feeling each day… what does it change? who does it help? Nothing and no one.

Lately, in the aftermath of a very scary and dangerous incident involving side effects to one of my main medications, I’m barely holding on. I’m grasping for a lifeline, for anything that tells me that one day, I will know what it’s like to feel painless. Last Summer I had my best Summer in a long time, and yet I still had down days. I think I’ll always consider that Summer my “Golden Summer”, because I know the chance of that Summer happening again is about as good as us finding a bucket full of gold.

Do you know what it feels like to be held captive inside a body that is constantly trying to hurt you, to break your heart, to crush your soul? No, no you can’t know this feeling sunless you’re living it. This is not the result of a bad accident caused by inattention to the road, or effects of a drug addiction, or any other bad lifestyle CHOICE. This is simply how my body treats me. This is the result of a 12 year old body waking up one day and saying “SCREW YOU! Why? BECAUSE I CAN!!!” And so here I sit, almost 17 years later, on my couch with a pharmacy of pills on the table to my right, being forced to continue taking the same pill that 2 weeks ago gave my loved ones (and myself) the scariest week of their life because going off it cold turkey is too dangerous, wondering when will this end? Will it end next year, or in 15 years, or in 50? When will I be able to live my life fully on a consistent basis or at least without having to pay for it afterwards? I’m sitting here tonight with envy for those whose physical struggles will soon be over, whose “perfect form” and painless days are just over the horizon. I’ll be waiting with baited breath for my turn.

 

An Unexpected Struggle

One of the things I hadn’t really thought about struggling with, is when all the kids I taught in Sunday School or my little sister, started becoming parents…. BEFORE ME. I know, without a doubt, that one of the hardest days of my life will be when I get that call from my sister, who’s 9 years younger, telling me she’s pregnant. Right before I started typing this I was wading through dozens of posts from 2 girls I taught in Sunday School when they were 12-13 years old, both of who are now married and enthusiastically pinning baby/pregnancy related pins. My husband is now in his 30’s, and in 6 weeks I’ll be entering the last year of my 20’s. And being a mother is still so far off for me, it’s hard to grasp it.

I will undoubtedly be thrilled for my sister, and these other girls when they experience that amazing miracle. I just know that it will also feel like a punch to the gut. My brother is 2 years older than me, so I always knew he’d most likely start a family before me, it still stings every time they announce a new pregnancy but it doesn’t feel like things are happening out of order. And I’m a girl who likes order.