What I learned in 5 years.

 

5 years ago to the day and the minute, the temperature was -14 and I was the epitome of all the strength that I did not and still do not think I have. I was 37 years old and afraid. I was afraid of everything. I remember it was a late winter night when 8 o’clock feels like the middle of the night. My car was parked in the middle of downtown Indianapolis and I remember navigating the downtown hospital and getting lost. Eventually, I found my way because of the wet sloshy snow being tracked in. When we came that morning my guy was driving and all was fine. When I left that evening my husband was so different. He didn’t even know I was there. He was oblivious to my presence or even his own.

I got into the ridiculously cold car praying the whole time it would actually start with the unusually cold temps and all the sudden I hear this weird high pitched noise and it was my front window in my car splitting down the middle. I looked down at my phone getting ready to call my guy. My phone was almost dead and my guy was several floors up in the ICU. I just drove and imagined worst case scenarios and I honestly do not even remember it getting fixed or what happened.

Can you guess what happened next? It doesn’t take much predictability. I cried. I sobbed and ugly cried and I asked God a lot of whys. This moment so private and raw that I have never shared it ever. I couldn’t believe all that my day had become. How did I get here and to this point and how am I so needy that I cannot even do these basic things people do every single day all by themselves.

In fact, I was holding it together so terribly in the hospital that the ICU nurse recommended I go “home” (you cannot really go home when it is two hours away) and said that my state of mind and his were not good. She could see I was struggling seeing my healthy vibrant and loving husband in that manner and convinced me that getting rest at “home” was for the best. I felt so much shame. But I knew it was the best because I was breaking. He was broken and neither of us could help each other right there in that moment.

I went to my dad’s house and barely made it in and felt like my 16 year old teenage self quietly coming in and climbing into bed. I set my alarm to call the nurse on her cell at 11 to see how he was and I did that. I woke up at 2:30 and was back at the hospital by 3:30 to much the same I left the day before.

But that isn’t why I am telling this story. Instead, I told this story to my guy last night. We are on the anniversary and I have withheld many of the details and my own personal struggle for him because that is what the caretakers of chronic pain/disease sufferers do. We pretend we are okay for everyone else because every one else needs that. And it is hard y’all. It was literally the hardest thing I have ever done and the the hardest thing I continue to do. He doesn’t remember any of it from any point of view. But I do. I remember it all.

But if you want to know what it really feels like sometimes. It feels like you are holding your breath, balled up hands and waiting. You get so good at acting okay that somedays you do actually feel okay, but somedays it is too much.

And the damn regrets. I wrote numerous posts during that time that I took down.  I deleted them because the pain was too real. Or even better. I didn’t want to deal with them EVER. And guess what I went looking for? The posts and they are gone. Why did I do that?  And the constant pretending I was tough, had it all together and didn’t need anyone or anything. Who is that girl cause she ain’t me. 😀

I know many of my readers are like, “Damn, it was five years get over it” because that is what our society does. We move on, one foot in front of the other, the sun comes out tomorrow. It always gets better and I believe all of those things to the core of my soul.

But you want reality? Life doesn’t always work like that. In fact, I may even go out on the limb and say rarely does it.  I have had so many friends that have suffered some pretty tremendous life let downs or losses and it doesn’t go away. I have lost family members that I still to this day ache to say hello to. Pain is living….it just is.

We have to stop with that! And just because I am writing from a place of pain right in this very moment doesn’t mean I am not healed. I am as healed as I can be for a wife who saw her husband in ICU at the age of 37 and him 40. That is NOT normal. I am healed as someone who could be who went through the 3 months before the surgery and every year since. I am as healed as one can be as I watch my partner living his absolute best life with TN since. But we are okay.

I am tired of the world telling me how I get to feel. I am tired of the world in general telling us how we need to feel. I am actually so very happy because that surgery gave me my husband back in his best possible way. He is beside me and he is helping me raise our girls. That is love winning, but that doesn’t mean pain and mental toughness isn’t along for the car ride sometimes.

So that crack in my window that night…it was the smallest detail in the last five years of my life. But it was also when I became a survivor or at least I acknowledged I had no other choice but to survive. Every single step I have taken since then has made me a better, stronger, smarter, woman, mother, friend, wife and why would I ever, ever regret that and hide it just to make others feel better?

That my dear readers is love winning. I got the guy. I got my girls. I got myself. And all of that is on our terms. – MR

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What I learned in 30 Days…

So I set out right before Christmas to prove to myself that I could workout for a full 30 days straight at the most busy time of the year. I did this for a few reasons. The first of which was I had severely fallen of the workout wagon and I love it. I have contamination OCD and I choose to not take meds which means I have to actively find ways to ease that anxiety. Exercise does that for me. See the first issue? The second was I have heard habits are built over 21 one days. So let’s add a couple of extra days and go for it!

And that I did. I am now currently on day 33 days but whatever. But the things I learned in that 30 days is:

• It is not always easy.
• The end is hardest just like grad school (I am pretty sure I cried the last week every day because I just didn’t wanna).
• I truly love the ‘pep in my step’ I get from that daily workout at 4:30 in the AM (and yes I realize this is weird!).
• I adore Shaun T. if you don’t know who he is…look him up! He is so motivating to me.
• I need to take care of me first and I can so much more easily take care of others.
• My girls need to see me taking care of me first.
• I am more productive across the board with that morning workout. I don’t know why I just am.
• If you record or time lapse a workout and put it out there for someone it makes you so much more accountable. I did it for a full 30 days and woah!!!! Now I just send a pic or some sort of thing to one of my friends.
• You motivate others when you share it out loud that you are challenging yourself.
• More than anything I learned…I can pretty much do anything if I set my mind out to do it!

Reality Check.

Highlight reel…

Cause when it is good. It is damn good. But that isn’t how life works. It is not always good. Also yes I realize that this post was literally about marriage being tough. But it is so easy in that post to get lost in what looks real and sometimes the reality looks much different.

There are also some really hard moments too. That are harder to explain and share.

They look a little like this. They are plain and utter exhaustion for living with and being married to someone who has TN. The meds, the side effects of the meds, and the surgery. My husband is not always the same person I married.

And quite frankly I am not either. I have been stretched beyond where I even believed possible. I have wanted to walk away and give up and sometimes I fought for us completely alone.

And TN isn’t the only monster we have faced, but in every problem we have encountered I literally can picture a cliff and us holding hands. We decided to do this life together and I am loyal and loving till the end.

And I suppose that is what I meant by tough. I thought socks on the floor and stinky feet were the bumps in the road. Our bumps in the road have been damn mountains.

Now because I am me and Imma do what Imma do I will tell you it is worth it. It will always be worth it. I chose this path because God has given it to me. Call that the positivity in me, call it always showing the highlight reel I don’t care. I don’t just say love always wins cause it sounds nice. Quite frankly there are times it is the absolute only thing I have to hold onto.

Love always wins – MR

 

I loved once.

“Grief is love’s souvenir. It’s our proof that we once loved. Grief is the receipt we wave in the air that says to the world: Look! Love was once mine. I love well. Here is my proof that I paid the price.” 
― Glennon Doyle Melton, Love Warrior

Which is hard to believe sometimes when most of the time you feel unlovable and that is not a pity me statement. Instead, it is 42 years of pent up “ugh” being shown, told and directed to how love looks.

It is kind. It is easy. It is hard. It catastrophic and minimal and the list can go nauseatingly on. My problem was always thinking I needed to be mad at all the people who said it. A sense of regret all wrapped up in resentment because I didn’t love the way the TV showed, or my relatives told me, or how the books I immersed myself in painted images. They all had so clearly loved and who the hell was I to question that?

Me a girl who has had a long and windy road of loving people for all the wrong reasons. The love usually filled an empty space with a bad relationship I had no business being in. A friendship that worked because I let it make me feel like I was not worthy of love. A misdirected passion and love for a career that I could deeply care nothing for. None of that was me despite my best acting attempts to make it so.

And I suppose the argument can be made that love came easy to me when I married a man who did really love me and that love was and has been equally returned. But in all honesty…I have never made it easy. Again harken back to this idyllic concept of love and what it was supposed to look like compared with what it did look like. That idea is pretty hard to live up to when there is no happy hallmark music and things like trigeminal neuralgia exist.

The world fills us with these unrealistic expectations of what love looks like and the belief that real love is easy love; but I am here to tell you after spending what I hope is at least half of my life feeling let down and not good enough for that brave four letter word. Let it go. Let it all go. Love who you want and how you want.

Love because it is hard. It is harder because it is worth it. And don’t let the world tell you what it looks like. Only you get to decide what you feel and how you feel.

I am so sick and tired of that. I have lost five people in my life that I loved dearly. Some were lost in death, some were lost in communication, and some were lost because I walked away or vice versa. One thing remains consistent, I cared way too much about how others thought I should love. When instead I should have loved the way only I know how.

I remember at my grandmother’s funeral feeling like I was smothering. Go stand by her. Tell stories about her. Nod. Cry. Hold her hand. At one point, I left the funeral home and walked across the railroad tracks about half a block away to a bakery. In that bakery they had the most beautiful peek-a-boo cookies. I bought one and I sat on a bench and I ate it.

I sat there for twenty minutes in silence enjoying that cookie eating a cookie I loved, beside a person I loved in a moment that I found a whole lot of love in. But it didn’t look like the love I was supposed to be feel experiencing of sorrow, sadness and tears. But I realize now that that was my love, my expression of it, and that was my grief…my way. A tiny taste of my childhood, on a warm July sunny day sunbeams in my face, a bench with a hand to hold.

I show my love in words, in actions, and in moments. I also show my love in ways that embrace me whole heartedly. If you love me, you love all of me…the anxious me, the obsessive me, the compulsive me, the wordy me, and all of my faults fully exposed.

I know this now more than ever. For me love is sharing my faults and admitting it is not easy for me to love the way the world tells us to love. To love through the hard stuff, to love when it doesn’t look pretty or sound romantic and to love when it would be easier to not love.

The one and only “easy” love that I have ever been given is for my beautiful, precious daughters because I want them to know that the world is wrong and that love isn’t always beautiful and easy, but for me as their momma my love for them is true, consistent and without fault or matter with no ifs, ands or buts that could possibly come with it. Love is always there for them…boundless and endless and unconditional.

The rest of the love I have to share with the world is a choice. My choice. If I tell you I love you then you should know it is because I mean it. If I don’t tell you, but I show it chances are that that love is really real to because I am willing to be me with you. And if I tell you and show you watch out world cause that is fierce and meaningful.

I believe in love above most all things. I believe in the people I love even more.

-MR

Kasey Tuli and E Party of 5

You see around last September my heart strings started to be pulled. The pull got harder and harder. Many years ago my guy and I decided to be a 1 dog family. Our oldest had dog allergies and we were just too busy. But then back to September….and let’s talk about my heart strings again.

We have gotten our dogs from breeders. We looked and looked at breeders and it just never felt right. We have the amazing opportunity of having a rescue a mile from our house. We kinda talked that it could be an option and finally decided to fill out an application as the rescue was very selective of adoptive families. We never heard back, so I assumed we were not accepted. I kept seeing dogs moving through their rescue and my heart was sad. My girls and I watched those dogs needing rescued like hounds (lol).

But come January we saw a breed come through of sibling puppies that had been rescued and we just couldn’t let it pass by. So we got more anxious, and I contacted the rescue saying we were REALLY interested and she invited us to come meet the pups. We didn’t really think we would be coming home that day with a pup. Based on the conversation it was a meet and greet and we went in with our hearts not ready to attach.

Well we got attached. We came home that day with Tuli. She was 1 of 5 siblings (I think) who had been rescued. She was so skittish and not at all wanting to trust us. But she kinda had to to get the basics. She attached pretty quickly to myself and my oldest daughter. She loved us all, but when scared or wanting something we were her go to.

Here in is where we fell in love with our Australian Shepard chocolate Lab mix. She is a fancy breed of Aussiedors that most would pay lots of money for. Gorgeous Aussie eyes coupled with the irresistible chocolatey color. Her fur so soft she feels like a stuffed animal. She had to trust us even though she didn’t want to.

It took lots of time and persistence and just continually showing up for her. But now she is so woven into our family. I remember when we first got her she wouldn’t walk anywhere but between my guy or I’s legs. Partially because she was so afraid of the world and partially because she herds. Oh yes we have quickly learned herding dog language. They steer. She steers us all the time usually to her food.

When we got her she was super skinny and small. 4lbs at roughly 9 weeks. She had only not nursed from her momma 1 day. In the 6 months we have had her we have found out she has a super sensitive stomach and has to eat a pretty high quality diet. We think she has some allergies in general to outside and to certain foods.

But my goodness watching my girls fall in love with this rescue dog has melted my heart. It hasn’t been the easiest transition. My older pup (my best friend in the world) has struggled with the transition and I feel like we are just now getting to point where they will co-exist maybe even cuddle via a butt touch (lol). They even share food and water sometimes.

But creating trust and and realizing how needy and insecure a rescue pet is has been eye opening to me and I mean that in the most positive way because those qualities have a way of demanding you live in the moment and give them what they need. But what we get back is massive amounts of unconditional love and cuddles. But there were a few times we almost threw in the towel because it was just so time consuming and demanding and we would take two steps forward and 57 back. But the match is made in our hearts forever.

Imagine leaving a room to grab a drink and coming back and your dog fawning over your return like you were gone 10 years. Yes this happens multiple times a day. She always seems genuinely shocked we decide to return to her. Add in that you get actual hugs daily a ton of times. Yes she hugs.

She now weighs a healthy 27lbs. She loves, loves, loves her food. She cannot have dog treats (or at least we haven’t found any she can have that don’t upset her stomach). So instead of treats we make her ice cubes for good behavior and she thinks that is pretty darn amazing. She is what I have called a kitchen sitter. She loves to be in the kitchen cooking with us. Not begging…like genuinely just hanging out. The funny thing is the person running the rescue says she did the same thing there, so it must just be her personality. And finally she is a retriever so she loves water. We play in the hose and the sprinkler because she burns up a ton of her energy by doing so. Sometimes her energy seems boundless and exhausting to us…but we also love it.

The most amazing thing which I think is somewhat breed specific and somewhat rescue behavior she literally lives to please us. She just wants to make us happy and constantly looks to do that. We are so incredibly blessed and lucky to have found this sweet little nugget. It is not always perfect. But we love ‘bubbas’ as we call her.

So dear blog….I should have introduced you much sooner to my new baby girl. Meet Kasey Tuli. Kasey is now 8 months old and was rescued from Lennox’s Legacy Rescue, a volunteer rescue that runs on donations alone, so if you are a pet lover think of giving. They also advocate for all the local animals in the area to have safe homes. I am so grateful to them for connecting us with puppy girl. (Edited to fix my numerous typos…grr).

E Gang Christmas 2017

Gotta be honest…pictures haven’t been much of a priority. The biggest goal for my break was to unplug. I spend so much of my time always connected to a device. A computer, a phone, my laptop, or my ipad. I just wanted to be with my family. My guy. My girls. My puppy. So I have. So I have mostly just captured bits and pieces of my holiday break.

Hope you and yours had an amazing holiday!  – MR

Grateful Day # 4 – I can thank myself.

If I could even put into words how bad I wanted this. Years. 4 years of working. 4 years of ups and downs where I gave up and started again for the 100th time. Maybe it took 4 years, or maybe it took some fire within, or maybe my surgery or maybe I just continued even when it was hard.

Frustration reigns supreme when you are focused on numbers. I know that. I purposefully had not weighed myself in a few days because I was tired. I was tired of the trying and eating and really just wanted the doing.

I see my doctor next week and I had hoped I had met my last and final goal. The one goal that felt impossible for years. As it seemed like more of a possibility I didn’t give into hope. Today I decided to step on the scale and it had been over a week. I didn’t expect much and I looked down and an audible scream came out then tears.

I sat in the dark of my living room with just the christmas tree lights glowing crying quiet enough to not wake up my number three. Sniffling and smiling and trying to snap a picture without the flash.

So today I am grateful for me for not giving up on myself. I am grateful that I have healed my relationship with food. For too long I let it beat me and let myself hide behind my weight, big frumpy clothes and all of my favorite carbs.

I am grateful I found me. I am grateful for finding comfort in my own skin on the inside and the out. I am grateful I let my “dear fat girl” posts go. Why would I ever address myself with such contempt?

Dear beautiful girl, the one who fights for who she is and who she wants to be. Never give up. I am so grateful for you. – MR

Saturday Sharing: Trigeminal Neuralgia

If you have read anytime at all you know that my husband suffers from trigeminal neuralgia and maybe you followed us over @ Our TN Journey. His journey at this point has been a long one.

Today is Trigeminal Neuralgia Awareness Day and unlike breast cancer or alzheimer’s there is very little funding, awareness or even acknowledgement of TN. This awareness day is not just about spreading the word and telling the stories. It is about catching the attention of doctor’s, and organizations who can bring a broader awareness to this disease.

The short version of my husband’s story is he lived for years with what we thought was TMJ. He was diagnosed by a local neuro and hadn’t shared the news with me because he didn’t fully understand the diagnosis he received mostly because you don’t really know what TN fully is unless you can see the brain or the meds used to typically treat work for it.

4 days later I took him to the ER in the middle of a snow storm because he was in the fetal position on the floor. He couldn’t eat, he couldn’t talk and he could not function. I received the diagnosis in that ER room. It changed both of our lives forever. A little over a month later he was down in Indianapolis under going surgery to make his life more livable.

He now lives on a daily regiment of multiple epileptic meds and has flare ups. There is a big difference between then and now. He now lives his life in chronic pain that no pain med works for. He manages the disease with the meds he takes and lives daily with the terrible side effects of the meds. But that became his new normal after the surgery so it is our new normal.

This disease is called the suicide disease because people see no relief from the pain. If you don’t believe me go to youtube and look at videos of sufferers flare ups. They are the worst kind of pain.

Every year I post facts, but not this year. This year I will post a picture of how my guy and I looked before his TN was diagnosed.

You can see how the three and a half years since all of this has happened we have aged a lifetime. This isn’t a feel sorry for me post. I don’t need any sympathy. This is the toll of trigeminal neuralgia physically on both of us.

But what I cannot take a picture of is the emotional toll it has taken on my family. It altered every single thing about my life. My guy and I have to work so hard for our girls and for each other because who we were when we met is so very different then who we were after TN.

So if you wonder how you can help. The best thing you can do is love and love hard even when it is not easy and probably especially even when it is not easy. Love will always win.

How do you even decompress after that?

I haven’t written in almost two weeks. In two weeks time I have lived a lifetime. Most of that lifetime I cannot even utter mostly because I was a tiny part of someone else’s story. That means they are not my stories to tell. I will respectfully acknowledge the honor of being a player in someone’s story and move on.

But can we talk the emotions of the last two weeks? And how we can decompress from that? Sometimes I hate just how “feeling” I am. Being an empath is not always easy. I feel literally everything and it feels like waves. Waves of emotion coming to try and topple me over. Imagine you are walking on the beach and as you make your way deeper and deeper into the ocean the waves get harder and harder to sustain. This is what my heart feels like.

Sometimes I can hop on a raft and be okay and other times I am just trying to stand up straight and not get knocked over by the tide. As of late the tide is knocking me over, but the worst was on Sunday night. My chest became super heavy and my shoulders were bearing the weight of the world.

As I climbed into the bed I felt so sad. This incredible sadness that felt like my own sadness and left me baffled as to where it came from. I pulled the covers over me and assumed it was a little bit of the Sunday blues, but as I tossed and turned and moved around throughout the whole night the sadness grew.

Eventually, my watch vibrated on my wrist a few times. A feature of my watch I usually leave off at night, but I didn’t this night. One vibration after another and I eventually tapped the screen around 4AM to see what was going on and all I processed was “LAS VEGAS” and “SHOOTING”. I thought to myself another shooting and tried to cuddle up in my blankets and move on.

But that nagging sadness came at me strong like a punch in the face. I laid in the dark and I flipped on my television and again my heart was crushed by the waves as they came over me. My heart has a way to predict this. I don’t even know how to explain it.

Every time one of these terrible events happens my sadness looks the same, and feels like my own and then the news tells the sadness I feel is the ripple in the universe that is forever there because of another senseless tragedy. Two words (senseless tragedy) that have some how come to not carry the weight that they should sadly.

I wanted to blog Monday, and Tuesday. The screen was blank and the curser blinked over and over at me on Wednesday and Thursday. Nothing. No words. What can I possibly add to a world so full of noise? Sometimes it just needs to stop. The silence…it needs to take us over so we can concentrate on standing as the waves try and take us over. Those moments to look up and pray or to hold on tight to the things we love the most. Just anything to make us feel less alone as we fight against those things tugging at us so hard.

When I say love wins and think about days like Monday I am not sure I can see the love right now in that moment. Because nothing about that is love, bullets flying from windows I have seen and crowds running in streets I have walked on. Seeing images of blood strewn across grounds and surfaces of where you have been creates a disturbing sense of imagination. And who would I be to suggest there is any kind of love in those images.

Do I believe those kinds of photos actually exist in those tragic moments? Is there love somewhere there in those images we cannot avoid that are all around us? There is I suppose. I know that because my faith tells me that. Which is why I suppose it is called faith. My faith…my belief in something when and where you cannot necessarily find it. Eventually the stories will trickle out that demonstrate acts of love and slowly a different picture will be painted.

But for me, love comes from the smiles and giggles that happened in my home the last few days when the world seemed so bleak. Love comes from getting up every morning and fighting the waves as they try and take you down. Love comes from finding my passion in life outside of my family in my career and in my education. I suppose that is love winning right now for me. It is slowly deciding that love will win because we decide to live on when it feels wrong or impossible or even selfish.

Love will always win. We just have to let it.

 

Date Night # 13453

My guy and I usually have a date night about once a week. We always go to the same place and eat the same thing. We are such regulars that we don’t even have to order. They know. That is kinda how our marriage has worked. We just find what works and it becomes a natural part of the marriage. That is what works for us. Routine and simultaneous movements together.

But we changed it up this week. We changed it up only in a small way and it just felt so different. But yesterday as I sat in a tattoo shop for my fourth tattoo and my guy was sitting there with me I had a moment. One of those moments you are so grateful that you have this person with you for the mundane and for switches from the mundane.

My goodness I have been with him for almost 21 years in a few months. I have had four tattoos with him holding my hand and that isn’t so momentous or gushy as I appear to be writing it. It is more about just always having that person there and making the mundane into fun date nights.

As I was sitting in the chair my tattoo artist asked me about the meaning behind all my tattoos and this newest one. I grabbed my guy’s hand and realized that every single one is centered around this mundane life we have created together. The hills and the valley, the pain and the happiness.

The first I got three months after I stopped nursing my last daughter as a symbol of taking my body back from pregnancy and nursing. The second was a semi-colon to symbolize my years of battle with my contamination OCD and recurrent depression as a side effect of the OCD, the third to symbolize the terrible year and subsequent recovery from my guy’s trigeminal neuralgia and microvascular decompression surgery. The years of fear that lead up to and after his brain surgery. Five hearts surrounding my semi-colon each one representing our family’s struggle with one teal to represent the love for my guy. The circle of hearts never ends and never begins which takes me to the newest tattoo. A bracelet of love around my wrist. A line of love that never ends.

The tattoo artists love our story because that is what it is about. We always get the same reaction, “Wow, that is a lot stuff.” And they are right it is a lot. It is whole lot of love and a whole lotta living. That is marriage and that is why we appreciate the mundane. When life gets mundane it is our fresh breath of air. Our survival.

This post wasn’t really supposed to be about our love story. It was supposed to be about how the mundane with my guy can be so much fun. It was supposed to be about us laughing with our tat guy when he said, “You guys have a pretty fun marriage, huh?” Because is all of that stuff that much fun? It was supposed to be about the way he expected us to follow up the tattoo with some romantic dinner and night out, but instead we told him we were going to the hole in the wall Mexican restaurant that is in a bowling alley that we go to every Friday or Saturday of every weekend and have for two years. He thought that was pretty funny. And then it was supposed to be about how throughout our weekly dinner I decided to try all the various Mexican hot sauces to just see how hot I could take it because that is where life is at.

When really it is about my family and how each one of them is woven throughout my heart and soul in ways in which they will probably never truly understand. The tough stuff, the happy stuff and the way we pull together is what life is all about. A tattoo can never symbolize it’s end as some assume because most of the tough stuff never ends. TN doesn’t go away, I live with functional OCD every day, we live with the tough stuff everyday, the tough stuff I rarely talk bout on my blog. But one thing is consistently true and that is that love always heals and it always wins. I live my life with this belief and I believe it to my core. My family shows me this. I may lead the charge of love, but it is because they inspire me to. This is more than marriage, this is my family. My every mundane day that we all decide to get up, keep going and live a life full of love.

With love written on my heart and my body -MR