I am not sorry.

I want to walk this life with grace, love and peace. I want people to think of me and think wow she is so strong and handled that so well. But there is a huge large gap between what I want and what has actually happened. And hate to sound even more bitter, but I am not sorry.

Instead lately I feel like I spend more time hanging out at the corner of bitter and angry. I am not even the one that suffers from tn and I am peeved. My reasons for being peeved are numerous and so very strong.

I imagine I am somewhere in the land of caregiver burnout where I think things that make me feel bad or I shush and rush out of my head. Or I think of people who have worse. People say…..like my husband. And I go into this world where I recognize none of this is about me.

But my gosh my life. My girls life. People ask me how they are doing. People ask me how he is doing. Rarely do people ask me how I am doing. I don’t need it either, it just gets lonely. I spent 50% of my life hoping and praying life gets less painful for him and I spend the other 50% worrying that my girls know and feel my life and desire for them to lead as normal of a life as possible.

Can you do the math there? I fit in there no where. As well, this is bitter and cynical me but my true people are few and far between. That means when things get bad or I am on mom/wife overload and I could use a hug or a phone call or just a reminder I can do this often the only person there to pick me up is myself. The people I think are my true people. The ones that will always be there. They are no where. They don’t call and they don’t text. I get angry and upset about that because they are supposed to be my true people.

But then I remember I am going on one of year of this life. And honestly five if you really add it up. No one wants to hear about the same whiny story for a year, let alone five. So I don’t blame them. It is what it is. The life of being married to someone with a chronic pain illness. That I suppose makes me needy. Or maybe that is just my own insecurity.

Yes that. Before tn I was not insecure. But now I am. I worry am I dominating too much conversation with tn? A constant inner dialogue plays in my head where I tell myself to shut up. They are sick of hearing it. If they really cared they ask. And maybe that is true, maybe not. Who knows? I know I don’t.

Then you have my relationship with my husband. My go to guy. Who I am fearful of burdening with my stresses and loads. I know well the martial vows we took. He will be there for me I have no doubt. But I can’t. I have to keep life as simple and easy as possible for him. That is hard though and I feel like I screw up daily.

I bought into the surgery will fix it world and yea it didn’t and I am mad. I want my normal life back.  I didn’t ask for this. My husband didn’t ask for this. My kids didn’t ask for this. And yet we are in this. Talking so much about tn now that at this point we don’t even need too.

So yea I guess this is caregiver burnout. I am so worried. I am so tired emotionally, mentally and physically. I am so ready to just sit it on a shelf even for a little bit. But I can’t. This is my life. This is his life. This is our life.

He tried a treatment last week. Good news we got a diagnosis of occipital neuralgia and it helped. Bad news it helped for two days and he was diagnosed with occipital neuralgia.

There are no words. There are a few prayers and hopes that it will get better. I believe in love and I believe in faith. Right now I am struggling with the idea of love winning and I believe that is because I am losing the faith.

And if you read this I imagine you are one of three things….

1) sick of hearing about it
2) think I am dwelling on it
3) want to be there, but don’t know how

I will tell you I am not gonna quit talking about it anytime soon. If you are tired if reading it then don’t. Defriend me, unfollow me if you need too. I don’t care. And if you think I am dwelling in it or living in the past or whatever go ahead think that. I am okay because I don’t really care what you think. Watching my husband living with this disease for the last five years is the worst thing I have ever witnessed and continue to witness. I don’t need people who don’t understand that around me anyway. As well, I would not wish it on my worst enemy so I will be grateful it isn’t a struggle you have to understand. Finally, I get that last thought. I do. It is hard to talk about hard things. What do you say? What if you say the wrong thing? I know. I live with that feeling daily. All I know is what is like to witness this disease. I have no clue of its actual feeling.

It is what it is. It sucks. I am gonna talk about it. There are some really amazing days and with those amazing days there are crummy ones too. But I am not sorry for hanging out at this corner of bitter and angry or being so brutally honest.

Tn taught me to wade past the crap and find the real.

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We are in the ring again.

Since May my guy has been feeling off. Since May I have watched one thing after another eat away at him and I have cried so many tears.  I am so damned sick of crying. All I knew is he was not himself. I started to wonder if it was me or if TN just took much of him away to recover from.

A month ago I begged him to see a specialist again. It seemed past the surgery recovery phase and it was just staying the same. He admitted he wasn’t feeling the best. By August he was on several meds again and dealing with horrible headaches.

We went on Thursday. We didn’t expect what we got. He now has occipital occneuroneuralgia which means it has moved to another main nerve coming out of that nerve center. The surgeon is unsure if this happened as a result of damage during surgery or if it just the nerve still healing.

My guy also believes his TN is not in the surgery induced remission because since it has been cold he  has been struggling with jaw pains again. The surgeon is not convinced. He feels like we have to deal with the ON to figure out the TN.

The headaches I have been yammering on and on about for t he last four months were occipital migraines. A very painful migraine. But thankfully (I guess) his tolerance for pain is high because he barely notices it or classifies it as pain. As we discussed with neuro my guy kept saying, “But it doesn’t really feel like pain.” But I watched the Dr.’s face and he shook his head and grabbed my hand and said, “That is nerve pain.” He went on to explain that his inability to recognize it as such is concerning.

Next Thursday my guy will undergo a nerve block procedure that will aid in the diagnosis of and possible treatment of the occipital neuralgia. It is done outpatient in the neuro and spine center in Fort Wayne. If it is just a healing nerve his relief should be immediate and it should allow him time to heal. He also can continue to have them every six months as needed. If it doesn’t help than we are looking at nerve damage.

That doesn’t mean he is out. It just means our options are different and anywayrisk/benefit analysis needs to happen. There are med options and surgical options. And the med option we already tried. He took him off all of his previous meds which were dangerous to continuously take.  He replaced it with some that are kinder to his body and geared more toward the neuralgia he is facing.

I feel positive about this because he has a plan and again he doesn’t feel crazy. All of the neuralgia’s are not common which means you have to have skilled doctors who know how to not only treat, but to treat the patients they work with. Thankfully, we have been blessed.

I am still rejoicing in the fact that our lives are better than they were. I am rejoicing that he can be a daddy and husband. I am rejoicing that he can go to work and wants too. I am rejoicing that I have the usual support system I do.

Sometimes I do wonder when it all gets easier. But I know that I am lucky because I have him with me. I go to bed at night with him and wake up with him in the morning.

And again I know there is a story here to be told. I am just not sure how to tell it other than my blog. The most important story though is the one my family is building. My girls get to see love and marriage and commitment. They get to develop and witness great strengths beside great defeats. There is beauty and character in a story like that. But nothing more important than Great Love.

I am not gonna lie and tell you that it all looks as beautiful as it is written in the above prose, because it doesn’t. I am sad, I am angry and I am heartbroken. I want it to stop and I want to say no more. But I can’t. I love this man. I hate that he has to go through any of it. But I also know his pain is much deeper than my own so I will fight on.

Just Write: In the fight!

1 year ago

My husband had tmj and he was seeing an orthodontic specialist who was fixing a bite. His bite wasn’t getting better. His family doc thought maybe a neurologist should be consulted. I was applying to grad school for my PhD.

10 Months ago

My husband was in the middle of the worst pain I had ever seen any human in in their life time. I remember him dropping to his knees and wrapping his arms around my waist and begging me to help. I remember that was moment I realized this was so much more serious then what I believed. There was a horrendous snow storm going on outside, but I called my in laws and said I need you to come get the girls and I took him to the emergency room. Hours there and many pain killers, muscle relaxants and steroid shots later and he was still writhing pain. The ER doc mentioned the condition of trigeminal neuralgia and I was confused. My guy seemed to have heard of it before and had recently had it mentioned to him. They gave him enough meds to sleep. He barely did.

11 months + 1 day ago

The pain was unbearable and my husband was on 48 hours of 10+ pain scale and barely any sleep. We were on an emergency phone call with a neurologist who admitted him to the hospital and tried multiple drugs. They tried to get him to eat. He couldn’t. Two day hospital stay with a neurologist whose wise words were, “Well I could keep you here, but that isn’t going to change anything. You are going to just have to learn to live with the pain.” I went from thinking my husband had a common jaw disorder to a neurological disorder in 48 hours and I was NOT going to accept this as his new life or mine.

11 Months + A week or so ago

Multiple calls to doctors and tons and tons of research and a few connections with other TN sufferers and a week or so of my husband in the worst pain known to man and my children sitting watching it and I was fired up. Finally lined him up with a neurosurgeon and they adjusted a few meds and wanted us to hang out. We tried. It was probably the hardest 6 weeks of my guys life. He couldn’t talk, eat or even breathe without it hurting.

10 months Ago

A half an hour work up withe neurosurgeon and he knew he was in over his head and his head nurse was on the phone with two neurosurgeons for my guy tobattle have an micro-vascular decompression aka brain surgery. A surgery that is not a guaranteed fix or promises nothing. A surgery performed by only a few and his doctor one of the leading ns to deal with trigeminal neuralgia.

10 months and two weeks ago 

My husband was in the ICU with machines attached to him everywhere. I saw him in the most vulnerable state any human could be seen in. I got to tell him the news at least 6 times that two compression on his trigeminal nerve were found because he was so out of it. I sat vigil by his bed and hung out with other spouses who were also sitting vigil. I felt powerless, helpless and vulnerable myself. We all identified with one another.

Life slows way down ago

The following months were filled with trying to regain some normalcy in our lives. Only to see that TN was not going down without a fight.

5 months ago

Began recognizing that it was going to be one thing after another. Another call and another call to amazing ground breaking surgeon.

1 month ago

The temperature started to change and as it changed more and more I began to see familiar things. Facial contortions, rubbing of his face, worried eyes, anxiety. Add in the side effect of the surgery that we were not expecting: bad horrible headaches. I again get fired up and a call to ground breaking surgeon and a plan of action. A plan of action that at first was slow and steady but soon followed with needs to happen sooner.

Today

So yea we wake up every single day and go to work, take care of our girls and our lives. But we do it in constant fear of how TN is chipping away slowly at our normal life. And I am not naive enough to think that I deserve anything normal or that normal even exists. But a world where TN didn’t drop in and blow up my life. Nothing about this life resembles anything I thought it would a year ago. And I suppose the same could be said for my life being completely different a year from now.

I also wake up every morning wondering how today will go. I hope his meds work and his pain stays at a minimum. And that is all centered around him. I worry we will be where we were a little less than a year go. I fear seeing my spouse that way again. I fear him having to feel that way or even having to worry about feeling that way.

That doesn’t even cover how I feel about my girls in all of this. He saves his best for them.

I could list all the things that TN has taken away from my husband, but that is his list to make. I know my list is long and I don’t even suffer. I suffer as the spouse of a TN sufferer. All I can say is it has changed me to the core. It has changed how I deal with life, people and my husband. I cannot unsee the things I have seen. It has only widened and deepened my love for him. But it has also made me bristly. I am insanely protective of us, our story and our struggle. But I also see the strength.

I have total and utter faith that love always wins. But this is the hard part….Love winning suggests fighting and we are in the fight.

Just Write: I worry.

I worry my voice isn’t loud enough.

I worry it is too loud.

I worry I don’t say the right things.

I worry what I say is right too much.

I worry people will forget.

I worry I remind them too much.

I worry you believe no one knows.

I worry you don’t realize how much I know.

I worry they will see too much.

I worry somehow some way I can make it better.

I worry that by making it better I make it worse.

I worry that some day I won’t have the worry.

I worry that the worries will never go away.