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.

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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.

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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.

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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.

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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 ūüôā ). She steps up to babysit a lot and be in charge when we need her to be.

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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.

 

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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 Р3 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.

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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.

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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.

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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.

Per usual fall course of Trigeminal Neuralgia 

We are in the thoroughs of trigeminal neuralgia yet again. Every fall it comes slowlyIMG_0146 and it seems to come much earlier. This year it played tricks. I am not sure if it was a longer and warmer fall or just a false sense of security that lulled us into thinking that the less stress job helped lessen the severity of the TN symptoms. But nope. From one day to the next things changed drastically. Meds changed drastically and pain changed drastically.

The good news is the pain hit my girls and I a little less hard other than previous years because it is ¬†becoming the norm. The bad news is the severity of the pain is higher and that has triggered higher anxiety for my guy and I. An increase in pain is never good because it means an increase in his horrible meds that don’t “fix” the pain. They attempt to make the pain manageable and they come with a a whole new set of issues. All of this last part not something we have shared with the girls.

But they will see it. I certainly have. His face has a TN face. I am sure I have talked about it here before, but there are literally hundreds of TN galleries of pictures of TN faces. TN attacks do something to the muscles in the face. Then there is reflexive response. We know that response and it is the one that makes me want to vomit on the spot. I see the fear it puts into my girls eyes.

It is truly one of those moments that you can say “been there done that” and my goodness I pray we never have to go back there. I know no promises are ever made in TN but I wonder why him? My family is so strong and so close because of TN, but the effects of this disease on my family run so far and so deep and so incredibly personal that I cannot, nor would I, attempt to dive into it all on my blog.

But in our private and quiet moments my guy promises me the pain is increasing but it is no where near where we were two years ago. For that honestly I am very grateful because that time and the way I felt…I just don’t feel like I can ever ever go back there. Of course I have no choice because I love this man more than myself and I will do whatever needs to be done for my family.

So we move forward doing the best we can do. We operate with life as normally as possible. I still get irritated with him for leaving the toilet seat up and for leaving his dirty socks all around the house. This life is our normal and we no longer sit with a veil of grief over our eyes like we once were. We had two choices….dwell forever in the “this sucks” phase which feels an awful like it is letting TN win or live the best life you got. We choose number two.

He goes to his doctor in January which was an appointment we just changed because this fall had been going so well. He has to update his surgeon as well because they want it noted every time his pain changes especially with increases in pain. He is kinda of waiting to make that call to see how the med increase changes his pain or if it does. That is always their first question.

If there is anything I have learned in watching my guy suffer from this disease it is to never judge something simply based on what you see. You have no idea of the battle people are fighting daily. If you walked passed him you would never know what he lives with daily. If you saw our family out and about you would have no clue. We don’t walk around all sad and downtrodden. Yes this sucks. Yes it is hard. But my girls are still young and figuring out life which is confusing enough without TN. I still adore doing theatre with my students. My guy and I still laugh and go on dates. My guy and my youngest still rough house like he did with our other two daughters. He still helps #1 with her geometry and #2 pack her lunch.

Life doesn’t stop. That is a conscious choice we make and many others make every single day. Please don’t ever assume you know the life someone lives because of what you see on the outside. That has been a message riddled in my ear all fall. In my experience people often don’t wear their battle scars proudly. I live very openly with my life because I have a public career, this public space and that is just me. But others may not.

TN Reader….I see you.

I see my daily stats here on the blog and I see what brings people to read. But I can always tell when trigeminal neuralgia has been placed into the search engine and somehow it brings a reader here because it brings up post after post about my guy’s TN.

I have been there…searching for answers and hope in the middle of the night. It is a wife or husband desperate to see a spouse 3b07eafbcd6f2f44884562b9af736d91out of pain or worse it the person who has been struck down by this horrible disease. With struck being specifically chosen because that is exactly what it does. It strikes you down.

I won’t lie and say I know and understand your pain. But I do know what it is like to witness and see. I do know how your whole life can be swept up in the matter of moments and can last years, months, weeks, hours or minutes. Each amount of time cruel no matter the duration.

I cannot give you answers or even best case scenarios. I can tell you that you will survive and you are exactly why I am so frank with our story. I try and not tell too much of my guy’s story because it is his to tell, but I can tell you there are bits and pieces of hope daily and I can tell you that you will hold tight to those moments because as I am sure you know they can be fleeting. Fine one minute and depleted the next.

I would never dare and say it will be okay. But you will be okay and don’t give up the fight.¬†

More importantly just know you aren’t alone. You do not suffer alone and if you need to chat please email me at mommyrhetoric@gmail.com .