Who is that girl?

In my interpersonal communications course, I have been teaching about the face negotiation theory. You know the one right?  The one that birthed the expression, “Saving face” or “about face”. This idea that we have faces for people, places and times. I remember being holed up in my bedroom after recovering from my surgery and doing in depth grade work on face and I immediately thought of this picture.

djNyTQBcTrqhDBcE7MKP9w

This is a picture that took me four years to actually look at. It was the holidays. My girls were so tiny. We were moving my husband’s grandma from one part of a nursing home to another. Her health was declining. We were in her apartment to go through her things. She had to pair down on a lot of her possessions. My husband’s aunt snapped it because she got a new camera and I didn’t want it taken at all because I was just sure of the absolute truth it would hold and capture.

One thing was missing. My guy. My guy who just that day was released from the hospital. I was two days into barely understanding my life had just changed in the most significant manner. I have always been good at just absorbing hardships, but not this time. I just spent the previous four days conquering every single fear I ever possibly held. I saw my husband on his knees begging to end it all. The problem with that is I had no idea why and what was really going on. I then left my tiny young children alone in my home in the middle of the night to drive my husband in a blizzard to the hospital. The next four days were inexplicably the hardest I have ever encountered. I went from taxi mom to wife beside hospital bed to cell phone talking/advocating for a husband who couldn’t speak.

And seeing that paragraph there and summing these transitional weeks into a paragraph does no justice for what that “face” is hiding. The simple act of helping an elderly woman “pair down” felt impossible and very last thing I wanted to worry about. My three reasons for being there and doing that were my daughters. I didn’t want them to know the world of pain I was in. The same sentiment went toward my husband’s family. My mother in law likely the only one who knew most of it because I needed to lean on someone that loves him as much as I do.

But I bring this image up now because I would never look at this picture. It has been on my fridge since that night and the four years since. I have maybe looked at three times sense and each time I did I couldn’t even look that woman in the eye because to me she is everything I am not. I barely recognize her.

I get so frustrated with myself now because I get all twisted up over the inability of public education to adapt themselves to my career path. College instructors in high school classrooms. Or I get flustered about the way system works to keep kids where they want them based on things that have little to no control over. I feel so powerless.

Then that woman there, she had power and she was me but I feel so disconnected from her and yes I know that is how survival works. I was in survival mode. I did it because I had no option. But my life isn’t much different now. Trigeminal neuralgia is a part of my daily existence, but I never talk about it. My life changed so dramatically that is no longer my new normal, but my normal.

But that woman, she could conquer mountains. She loved her people so fiercely and fully and powerfully that she literally could have moved heaven, earth, a large car all before 9am. But now, I forget my kiddos spelling stuff. Or my husband’s parent teacher conference schedule.

I have to keep reminding myself that that face is there. It is who I see in the mirror every single day. This is not some existential crisis or me taking myself back. But what this is me revisiting a promise I made to myself and I am sure if I looked hard enough in my archives I would find that actual written promise of it. But I told myself I would never forget what felt important and my very precise ability to cut through the crap and get to the heart of what matters.

As the days and years pass I try and remember that face and the ability that comes with that face because I need her. We all need her. She gets it done and doesn’t sit and complain about the obstacles. There are ALWAYS obstacles. ALWAYS….ALWAYS and I have ALWAYS moved passed them.

No infinite wisdom here from MR. Instead, a reminder that we all have that face even if we don’t feel like it. We are inherently meant to and equipped with the will to do and be better than who we currently are.

-MR

Advertisements

It is just life y’all.

IMG_0411I have a friend whose husband is in the thoroughs of the unbearable pain that is trigeminal neuralgia.  I have been sitting on the side trying to be as supportive as I can be. But hearing the amount of pain he is in just takes me back.

The images, the sounds, the feelings. They were all so awful and I was not even the one feeling them. One day a week or so ago, we were texting back and forth and I was quickly reminded why this is called the suicide disease. There can sometimes feel like there is no out and like no one believes the incredible amount of pain your spouse is in. It is awful.  An emotional gut punch again that had me pulling over to the side of the road. A lump in my throat and tears.

TN is the bane of my existence and just because I don’t talk about it doesn’t mean it is not there. It has moved into my home in a different way now. My guys TN is now what you could call livable. He functions in his daily life. He works full time (plus actually), he goes about life as best he can. He exercises moderately…not at all like he used to. He just cannot. He celebrates birthdays, he laughs and plays games. But he isn’t the same.

The TN pain is not gone. He lives daily with pain and takes medicine to live as normal as a life as possible. What plagues all of us now are the side effects of his daily meds IMG_6025to make his life manageable. He hasn’t been med-free except for a very short time soon after the MVD. He moves around dosages according to his pain tolerance. He adds in meds for when it is really bad (December – February). But the meds he takes….they are awful.

Look up anti-seizure meds, side effects and long term effects. You will get a distinct picture of the life we live now. It is hard to say, but he isn’t the same. We are not the same. It is not always easy or even pretty all the time. But I love this man. He did not ask for any of this. But none of that makes life easier for my girls, my guy or me.

And sometimes he gets bitter, or I get bitter or my girls get angry and thankfully we are good at reminding each other of the whys in those times. Our normal is a new normal and an okay normal because it is still so much better than where we have been or where we could be at the drop of a literal hat.

My friend. Her husband had an MVD a year after my guy. He was perfectly normal and fine. Then one day he wasn’t. That is just how quickly it can change. Remission is NOT guaranteed or promised. TN SUCKS.

We search frantically still for answers, pills, supplements, oils and look for laws to change, the right organizations to notice. He used to see his neuro in Indy once a year and we are now into twice a year. He winces his pain in his face and it makes us all nauseated or sometimes we just have to ignore it all together because it hurts him we notice his pain.

But more we live in fear of that hat dropping. That takes it toll on him more than me. The anxiety of not knowing if or when it reaches that state again. Or fear of the time his pain shifts from a daily 3-5 to a daily unbearable. To scared to hope for a time when you don’t have to rank his pain.

But I live for and with love. I cannot live in the what if. I am so miserable there and when I am miserable I make everyone around me miserable. But it is easy for me because I don’t live with the chronic pain. So I try and remain positive and try hard to not dwell on the side effects of the meds as best I can. I try and love my guy the best I can.

SAMMY KERSHAW – LOVE OF MY LIFE

As we stand together
I promise forever
‘Til the day that I die
You are the love of my life

You are the love of my life
You are the reason I’m alive

He is the love of my life… – 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.

myguy1

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.

E – Party of 5

It has been a long while since I have updated about all of my family. My family has been so amazing this summer. Everyone re-arranged their own things to be 100% there for me and the family. It is not that I thought they wouldn’t. It was more they exceeded my expectations.

I remember so clearly the toils and tribulations of raising littles and just how exhausting it all can be. Don’t get me wrong, raising teenagers and bigger kids is exhausting too. However, I get to see all that hard work of teaching and showing them the way as littles is paying off.

My conclusion…I am raising inclusive, kind and self thinking humans. My goal to raise inclusive, kind and self thinking humans. I love that they are not afraid to be who they are. I love that they feel others hurts and are empathetic and kind. I love that they talk to me. I just could not be more proud of any of them.

My youngest (#3) is 8 now. 8?!!? How did that happen? I think because she is the baby I will always and forever see her as our baby. We definitely baby her a lot. Remember up there where I said they exceeded my expectations….she has done this the most. I never realized just how much I do things for her. She had her first birthday party with friends and she has a really great group of friends.

She is going to be in 3rd grade and is super excited about it. She is definitely my handful. She is so social and way more rebellious than her sisters. But I like it. She always quickly has remorse when she is super sassy. She still says the funniest things. Two days after my surgery I was begging to NOT laugh. Her goal to make me laugh. She did make me laugh too. She is kinda dying down with the shopkins, but every time I think she is done with it there is a resurgence. She also loves roadblocks (spelling??), barbies and hanging out with her Daddy. She isn’t sure what she wants to be when she grows up.

IMG_7861

IMG_7915

Then there is my # 2 and she has been by far my biggest savior during this whole recovery. She has essentially taken over the kitchen and feeding this crew. Yesterday she made a comment about how she realized how much food we eat. She has pretty much made dinner and sometimes lunch every day. She is also cleaning the kitchen (sharing that with big sis) and going to grocery with myself or my guy. I am grateful for the time we have gotten to spend together during this time. She has just such a neat personality and we are kindred spirits when it comes to be creative. We have literally spent hours talking about planners, pens and stickers. Yesterday even she painted my toenails for me. She is definitely all about taking care of her momma right now.

She is gonna be in 8th grade (boo…last year before high school). She has an amazing group of friends she has had for a long time. She loves writing, music and is not afraid of anything despite a weird internal afraid of everything. I hope that makes sense. She is a trendsetter. I am not joking….she knows what will be cool before it is. I am not sure about her and college. She says now she doesn’t want to go. But I truthfully could see her blazing her own path that lets her dictate what her day looks like…be her own boss ya know. I could see her cooking, djing, writing or something like that. Maybe even a hairdresser. She loves photography just like me and the middle pic was me taking a pic of her taking a pic. I loved the way it looked.

IMG_1088

IMG_7713

IMG_7911

My # 1 kiddo has had a DAMN big year. She started high school. She started her first job. She is gonna be 16 in three weeks. She got her permit, has her first car waiting on her in our driveway when she gets licensed in November. She also played softball and is playing golf (we think). She is the child that most definitely has many similar interests as I have. We both enjoy being active and eat very similarly. She is way too smart; it amazes me because I feel like there isn’t anything she cannot do. She is so aware of the world and its injustices and definitely and empath like myself.

She is going to an early college and will be a sophomore. This year and next year she will be taking quite a few of her college courses. She is extremely interested in science. She wants to go to small college. Currently, Rose-Hulman is her first pick with Butler being second. She intends on being a doctor. Not sure where she is headed for graduate school so we will see. She is the momma when I cannot be and sometimes when I can (she is a definite leader 🙂 ). She steps up to babysit a lot and be in charge when we need her to be.

IMG_7716

IMG_7912

Can ya’ll see why I am so proud? These girls are my reason why for ever single thing! I want to raise good girls that are world changers. I hope they make the world a better place to be in. I know they make my world a better place to be in.

And finally my guy. He has been so amazing. He had to yet again deal with the TMI aspect of being a woman and did it all without any complaints. He has taken care of the girls, myself and himself without any complaints. He has slept in the living room since my surgery so as to not bump into me. This is all while dealing with a chronic disease. The two weeks leading up to my surgery he was out of town for training. We haven’t had as much time to hang out and “date” like we like to because of the surgery. But we will get there. We know for us that is important part to keeping our marriage fresh. However, sometimes you need things like this to remind you why and how much you love one another. I spent the last three years making him a priority and put this surgery off because of his TN and fears of flares. So to have a slight role reversal was good.

 

fullsizeoutput_151

IMG_7891

Finally Love Wins. This isn’t much of a struggle and is more of a relief to have done. But damn I love these people of mine.

Family is everything – MR

 

Trigeminal Neuralgia – 3 years later 

Sometimes I get asked about the personal stories I share on my blog and there are a couple of reasons I do this. The first is I am a writer. I was born a writer and will always be a writer. Writing is woven into my heart and soul like my children are. An essence of my being that exists inside, outside and because of me. 

But when I share personal stories about my marriage it is because I have a story to tell. One that probably doesn’t look all that different than someone else’s, but maybe they haven’t uttered it. Or maybe they don’t even know if that is their story until they read mine. But more than anything I share it for me. I grew up thinking love looked a certain way and I tried so hard to push and shove and mold it into that vision and it never worked. I want my baby girls to know what true love looks like not the packaged version the media sells. 

Three years ago I found out my husband had not been telling me the whole truth. I sat in an emergency room with him as he hadn’t eaten for three days, barely had spoke and begged for the pain to end. He had been battling what I believed to be TMJ for four or so years and had in the previous week been to see a neurologist who placed him on loads of meds. But out of no relief and desperation I put him in a car and drove him to an emergency room in one of the worst snow storms our area had seen. 

I had to do all of the talking for him because he couldn’t speak. They immediately hooked him up to an IV drip of pain meds and I explained his years of treatment for TMJ. They all looked baffled and remarked never had they seen TMJ cause this amount of pain. After a few hours and no relief he looked up at me with tears in his eyes and whispered trigeminal Neuralgia and uttered I am sorry. He also gave into all the meds being pumped into his body and fell asleep, but not with out the wincing pains cause every few minutes he would move and scrunch up. The look of which still tears at my heart and informs me it is a bad TN day. Eventually the doctors came in after talking with his new neurologist and gave me the diagnosis.

Trigeminal Neuralgia and I began to hear what I have heard 100 times over, “There isn’t much we can do for that.” We were sent home with meds that didn’t work and the sad pity eyes that we have grown accustomed to. For the next 8 hours I pondered why he hadn’t told me, but a Dr. Google search told me. My guy has always tried to make life easier for me. He is my number one protector and he tried to protect me from this. He couldn’t. 

A restless night of no sleep as I watched the man I love and made a life with look weak, scared and in such pain that he couldn’t function in his life. The kind of pain that makes you retreat into your own mind to cope. The moment that was likely most devastating for me was what I woke up to when I accidentally fell asleep. What I can and will say is I immediately called his neurologist on his emergency line and demanded he be admitted into the hospital and an hour later he was admitted. 

He spent three days there that ended with, “He is going to have to find a way to live with this pain.” This is after three days of a morphine drip he controlled, and 6 different types of meds to control his TN and his pain. He was eating hospital protein shakes and had lost 15 pounds. When the doctor made that statement I didn’t even wait for him to leave. I excused myself and I called our family physician and demanded they get us into a more specialized neurologist immediately. I took him home and a week and a half later we were in that appointment which the doctor demanded a phone to call a specialist in Indy right in front of us  and then two days later we were in Indianapolis with one of the top TN doctors. And a week later his microvascular decompression surgery. 

My guy has atypical trigeminal neuralgia which means nothing works 100% usually. Things can make it manageable, but those things are different for every patient and sometimes they change once you figure them out.  He went into surgically induced remission for about 4 months after the surgery. He remained off his meds for about 6 months. He typically has seasonal remission during warmer months, but did have some flare ups during this spring and summer. He takes three meds daily for it and every winter his pain gets increasingly worse. 

This life isn’t always easy, but it is our life and dare I say our normal now. The surgery, the side effects and the trauma have fundamentally changed who he is. That takes a constant readjustment for my heart and brain. That is hard, but my God do I love this man. He is the strongest most steady thing I have ever had in my life and I love this life we have made. I know God had a plan for us and this. I got to see what I needed from a human in my life because of this and I also fell in love and got to take care of him in a way I never thought I had the ability to do. I thought I was strong before, but I know my heart has super human strength with the capability to love beyond self. 

So am I saying I am glad for TN…no not really…but I am grateful for my path and my love. 

I actually didn’t freak out.

My kids have finally reached the age where my guy and I can take off for an hour or two for dinner. So we do. Every Saturday in the ol’ E house is date night. We have been doing this really for about the last 6 months. It is a great time for us to catch up from the week and to reconnect.

strength

Our conversations are usually centered around work. Teachers talking shop, you know? Sometimes we offer one another advice and sometimes we share frustrations. But a few weeks ago in our corner booth my guy decided to change the topic of conversation. It starts with, “Don’t freak out but…”

A moment that felt like a lifetime passed. I was mid chip in salsa mode and I looked up at his face. I didn’t have to hear the end of the sentence because I already knew it. The TN. It is always the TN. He said, “My TN. My pain. It is back.” I took a deep breath and ate my chip. A lump came up into my throat and I truthfully wanted to cry…not freak out.

There is one thing I am certain of. He doesn’t complain about his pain, so when he does I know it is serious. I asked how he knew. He said he had been getting the shocks for the last two weeks. That was with his upped dosage of his two TN meds from last May. He said since the surgery the shocks would happen and then he could feel it go numb. He said that is not happening anymore.

He said he added in the third med. The dreaded third med. The one that causes bad side effects. It makes him irritable, tired and like an 80 year old man more than he already is.:D He said he wasn’t getting much relief.

My lump left. I didn’t freak out. We made a plan because he had to go the neuro soon anyway. We go from here. We have had three years to plan for the worst case scenario. We have situated ourselves with work that we can handle whatever comes our way. No I am not sure this is worst case.

I worry more about my girls seeing him struggle. His facial contortions when he has these pains are noticeable. It makes me feel like a lightening bolt shooting through me threatening my safety and security. They scare them too. I have seen them. He has done well hiding it from the girls.

But I didn’t freak out. I am nervous for what this winter brings. He struggles bad when the weather is chaotic and they are predicting chaos this winter. But I feel in control this time. I feel like we are much more educated. We know at what point to take the pain more seriously. I truly worry about the side effects of the med stealing my guy away from us more than anything.

Some wounds just don’t heal. 


I have been grappling with something this week as I discussed in yesterday’s post. I haven’t lost my way perse, but I want to own my truths in the most real way. I choose to do it here. Something here feels lonely and unheard but heard even though it is a public blog. 

Walking with the familiar sites and people rushing about. You know two things are happening around you. You are surrounded by people who have their lives and hands emmersed daily in life changing moments. It is a swap of moments filled with purpose and trepidation and for me memories. 

Surrounded by beeps, machines and a sense of worry in the air. It almost smells of the concentration of a dreams and hopes on the verge of collapsing. Ask me what that smell smells like and I would tell you. I don’t know, but you know it when you smell it. 

This space doesn’t look all the different. In fact, some of the faces are the same. They may hold different personalities or bodies, but their smell. That fear… it is all the same. My knees felt weak. A moment in the elevator a kid smiled and I smiled back hiding what my mind is really saying. I am pretty sure that moment is a repeat too. Repeat and repeat.

But I did it. I didn’t do it because I had to. I did it because life does move on. I did it for love. Love of another, because my love was needed in that moment and because I needed to give that love. None of it was easy, nor will it ever probably be. But I did it, I let love win even if some scars never heal. 

TN Gut Punches.

Here I am living in the “normal” world where TN doesn’t rule the day. It doesn’t rule my thoughts and actions. Then SMACK it does. It rules all of those things.

And in almost an instant I turn into a zombie. I just feel like with TN sometimes we always live on the edge of living and waiting for the next bad thing to happen.

On Monday it started happening the contortion of my guy’s face. He holds it all weird in hopes to eliminate or ease the pain. Most of the time he doesn’t even realize he does this. But I do. The girls do. It was just once or twice and then it was once or twice an hour. And now it is regular.

I also noticed pretty quickly his eating habits drop. He won’t eat. If he does it is barely. His mood changes. He is so grumpy. He took the day off this week and called his neuro which I know is indicative of it bugging him. Typically, I have to nag for him to call.

He got more meds. But the reality we know is that more meds rarely work. They turn him into a shadow of who he is. He becomes tired, lethargic and irritable. He sleeps….A lot. What is supposed to be a “promised” seasonal remission turns into not that.

We always go out to dinner with my in laws on Thursdays. I was worried because I knew he wouldn’t let the girls down and not go. He went. He ate. He suffered through. That is the thing. People would see him and think he is okay and I suppose he is. He whispers to me, “It is doing it’s usual”.

I guess it’s usual is painful. Disruptive. Worrisome. Making me lose sleep. Making me tired.

I hate TN.

The Dark Is a Thing.

IMG_0300

 

Two years ago you wrote in the middle of the night. At my table you laid the blame of the world. The blame of the anxiety I have dealt with for years. The blame of not being able to find my way out of the dark. The blame and burden of years and years of hurt.

I didn’t have the time then to care. It wasn’t that I didn’t. It was that I couldn’t believe what I was reading. I couldn’t believe that someone that I believed to be so connected to me couldn’t find me in the dark.

I struggled daily to get out of bed. I foundered and faltered. I held the tears back with gates. I held myself together with tape. You knew that. I told you that. I told you that over and over and over. I lost myself.

I called you crying in the middle of the night. “I can’t do this. I don’t want to do this.” You sighed. You laid your burdens on me as if I needed more. You never even convinced me I could do it. You never even tried. You sighed. You sighed again and again and said, “I understand.” But you didn’t.

I sat alone watching my husband being kept alive by machines. I heard the hush and purr of oxygen and computer working in sync and there was an empty chair. No one to hold my hand. No one to see how desperate I was. Meal after meal in that sterile smelling room, I sat across from an empty chair.

I held my husband’s lifeless hand with no grip back. No one could ever understand what that felt like. No one. That is dark. That is the darkness taking over. I fought it off hard and I finally won. But the battle wasn’t easily fought and most certainly wasn’t easily won. I don’t even think that is a possibility to truly win.

What happened in the last two years was an un-jaded girl married to a boy living happily ever after turned into a skeptical but gratefully married woman married to a man who has had to suffer more than any human should ever have to and decided that living on love and knowing it can all be gone in a minute is exactly how she wanted to live.

I am not the same which I guess is what bothers you. But I can’t apologize for who I have become. I am who I am meant to be. God didn’t give me this storm to come out the same on the other side. He gave me this storm to show myself I am a fighter and that I don’t need anyone else to tell me I can do this. Because I did it. I am doing it and I tell myself every single day because there is an existence of a better day.

-Jewel (words in italics and in the picture)

Life interrupted.

3b07eafbcd6f2f44884562b9af736d91

I climbed into a booth for my usual Saturday date night with my guy. We have been doing this almost a half a year at this point. On Saturday night the girls scatter around and we sneak off for a quick dinner out in our dinky town. The chill outside was so cold and temps dropping.

He ordered a beer and I ordered my unsweetened ice tea. They bring the chips and salsa. I look up and his face is motionless. His eyes afraid. I whisper, “What’s the matter?” I get nothing, not even an eye blink.

I get in a bit more of a panic and say, “Are you okay?” But I knew. My heart knew. He held still each of his muscles contracted so as to avoid any sudden movement. He points his finger to his jaw. I look down.

I waited so he didn’t have me staring at him. It felt like awhile and looked back up and said sadly, “Are you okay?” He didn’t say much. Then he said, “That hurt.” I asked if it was eating? He shook his head unsure.

We sat silent for awhile. Both of us knowing what the other was thinking. Is this happening again?  Is eating going to trigger his pain again? I cannot stand silence, so I asked, “Has this been happening?” He said, “Not really.” As he finished that he trailed off….Motionless face. Stiff muscles. Again not even three minutes later. We sat there and he had a few more.

Today continued with some more. I am not sure if it is the cold or the barometric pressure. Both can easily be a trigger. I wonder if it is the stress. We have had some added stress at home with various things. All are triggers. But then it could just be TN because TN works like that. No rhyme, no reason….LIFE interrupted. Time will reveal I guess.