You moved on. We didn’t.

I am not choosing to live in the past or making something out of nothing. I am not making this up or making it worse than it actually is. And until you live in my life I encourage you to just listen.

Every single day I watch the man that I love more than anything struggle in pain. A pain that all I can do is google and see it is “the worst pain known to man” or it is “the suicide disease”. I can imagine what it feels like. I can write for you all what it feels like. But the reality is all I can do it talk about how I see it. I do not feel it.

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I see a man that goes to work and does the absolute best he can do. He does that for his family first and his students second. I also see a man that had high hopes that under going brain surgery would fix his pain. A pain that he has lived with far too long. It didn’t.

It isn’t in a tight and pretty package like it is in Facebook world or movies. In fact, it is down right ugly. It has continually gotten worse. I won’t present my life as perfect for the sake of making the world feel better. I often times feel that pressure. And I can show you beautiful pictures of my family moving on and living. Be living is beautiful and we choose to do it.

But think about our actual options. We can stop dead in our tracks and believe me sometimes we want to. Or we move on and live the best life we know how. But if I could wrap the actual picture up for you of how last year has changed our lives you couldn’t see it.

Dwelling would be staying there. Living in the past wouldn’t live in hope. Which I do. We work together to create a new normal. But yea, I am not as good at returning phone calls/emails. And maybe I am not always the best mom/friend/sister that I can be. Please accept my apologies. I am doing the best I can.

I have three priorities after my faith happening in my life. My husband. My children and my job. They consume me. I will not apologize for that anymore.

The neuro here in the Fort admitted he couldn’t handle my guys case anymore. He has been suffering bilateral shocks since the weather has been ridiculously cold. Shocks usually spell out compressions and consistent nagging pain spell out irritation. So what we have is occipital neuralgia, trigeminal neuralgia on both sides of the face with electric shocks. Meds are increased and he now will have permanent care at a Goodman Campbell Brain and Spine down in Indianapolis. Dr. Cohen is working with a neurologist to decide if surgery is an option or if they believe meds could be therapeutic.

So yes am I stuck again in the world of I don’t know. Yes I am. That is my reality. But my true reality is I am married to a chronic pain sufferer. I am trying to raise normal children with him who aren’t forever scarred by seeing their dad in pain and their momma constantly worried about him. I am trying to keep a marriage healthy and my job that I adore. I am doing the best I can and trying to remember love always wins. It just has too.

Saturday Sharing – The Food Edition

Oh yes I have lots of food stuffs to share. Unfortunately, in none of my food stuffs did I have the foresight to take pictures. But I must say I rocked the kitchen this week in a mad, mad way!  As the school year progresses we all start to feel like we can catch our breath and it becomes a little less Pizza Hut feeding the Eichenauer’s and a little bit more of the Eichenauer’s becoming self-sufficient and cooking for themselves. Our biggest issues is lack of time. We have piano lessons, dance and sometimes softball. Add in meetings for work, classes for me and just sometimes needing to stay after work and some days I try and convince my family that string cheese and pepperoni’s are a meal. In fact, my # 2 has named those nights tapas nights. We literally take all the things we have that we can right now, cut them into small pieces and add in a yogurt/pudding or applesauce and it is Tapas Night at the Eichenauers.

My biggest battle in the kitchen (beside time) is I get really tired of cooking the same recipes over and over. I get really tired of being the one that always decides what is for dinner. I have found the more I rely on what the girls actually want the less bored I get. As well, my # 2 is becoming my sous chef. The girl loves to cook and really I haven’t found much she is afraid of. So together we usually tackle our family meals.

Baked Chicken Parmesan Breasts

 

This week we made an Eichenauer favorite. A recipe that stemmed from one my mother in law makes. But in the kitchen I am queen of change meaning I make recipes my own by changing something in them. Sometimes it can be out of necessity and sometimes it is just because I am creative in the kitchen. But this change happened out of necessity. My girls love grammy’s Parmesan chicken breasts. I love them too! I remember her making them when I was dating my guy. They are a mix of buttery parm, bread crumbs and baked. They are so good. Well we didn’t think it could be topped. Till one night that was the request from my girls. I agreed to make it and I went to go get my breadcrumbs and was out of luck. I had none. I don’t really used pre-made breadcrumbs. I usually will make my own or use panko. I had none though. So in a panic I was not sure what to do and my # 2 suggested using Zesta saltine crackers and I thought okay. I added some Italian seasoning and the rest was the same. Immediately, we had a hit! We loved the crispness. It makes it almost like fried chicken without all the fat. I have a recipe but it is loose.

  1. Melt two tablespoons of butter and add 1/4 cup of  water (sometimes we will add milk if we are feeling fatty)
  2. In a bowl mix 1/2 cup of smooshed saltine crackers and 3/4 cup of parmesan
  3. I add in a tsp of italian seasoning and I smoosh it in my hands to wake it up (I use dried herbs here)
  4. Slather chicken in the liquids and then the dries
  5. Bake at 350 for 45 mins or until juices are clear.
  6. EAT and enjoy!

foodBaked Ziti ala Pioneer Woman

This week we also made probably one of the best Italian dishes I have had in awhile. We saw her show last Saturday and I made the recipe from my head from what I could remember. I solely made this because my # 3 kept begging for it. If you know my # 3 you know that her begging for food should be listened too. The girl never eats. So if something has her going, you feed it to her because it won’t last and sometimes I worry she will wither away. And no I am not a short ordered cook. Remember the tapas? The girl lives off of string cheese or mickey shaped cheese and turkey pepperonis. Oh and cookies.

Anyway, I have found out this year if a recipe calls for ricotta. Do not put cottage cheese in it. Do not substitute with anything else. I am serious. You are committing a sin if you do. If you want lower fat the ricotta peeps made that for you so get that. But I repeat do not substitute with anything else. It makes your Italian recipes that call for it simply divine and creamy. You will thank me I promise.

So first things first. Brown your hamburger. For me I mince about 3 tbsps of an onion and two garlic cloves to brown with my hamburger. I usually just use 1/2 lb of hamburger or 1lb if we are feeling meaty. My girls like the meat to sauce ratio to lean toward the sauce versus the meat. Once it is browned, drain. Throw back into the pan and make sure it is bigger and add in your sauce of choice. You could make your own sauce here and I would if it were the weekend or if I had some in freezer. But I didn’t. I choose Ragu original because the others are either blucky tasting or have too many herbs. Let it simmer and while it is hanging out get out a bowl and dump in a small container of ricotta and you could certainly use more if you wanted but I am not a gigantic cheese fan so smaller is better for us. Also toss in a egg and add some Italian seasoning. About a tsp. I smoosh in my hands again to wake up. I also add in about 1/2 cup of fresh grated Parmesan cheese. Then mix all together. While all of that is happening cook your pasta. We used ziti.

Now you are going to get out a 9×13 pan or two 8×8’s. Layer it similar to lasagna. First layer down is meaty sauce and make take a little more than regular layers to cover your pan. then pasta. Then cheese mixture and once I am on the cheese mixture layer sometimes I will add in grated mozzarella. It is up to you and your preference. Continue till you end with a meaty sauce layer. Then add in grated moz and parm and bake. It shouldn’t take long here maybe 20 minutes on 350. Serve with a salad and bread and you are all good. Enjoy!

Chili Time

Here in the midwest we like our chili. I have lived in both Indiana and Ohio and I have found that eating chili is so different for each state. However, I am a Hoosier born and breed. Therefore, my chili preference mirrors my heritage. Now my guy, he is a traitor and enjoys the Buckeye variety. He rarely gets it because sweet chili is so hard for me to put my head around. I usually will make it once or twice a year, but not much more.

Mine is way more simple.

  1. Brown 1lb of hamburger with half a minced onion (I have kids all my onions are minced)
  2. Boil pasta shape of choice while cooking (you can add it into your chili if you are like a thicker chili. It does suck all of the moisture out so I usually do it on the side)
  3. Drain meat add back to soup pan. Add in a half a box of chicken stock or the full thing depending on how runny you want it
  4. Add in a large can of tomato sauce. Here you can substitute for a large can of crushed or whole tomatoes. My family doesn’t like tomato chunks so I just go with sauce.
  5. Add in a can of brooks chili beans 
  6. Add in chili powder to preference (sometimes I will use a brooks chili packet…depends on my mood)
  7. Let cook and serve over pasta to preference.

It may be boring, but it is good and my family loves it. We serve it over zesta crackers or fritos. Add some cheese and yum!

Thanks for reading and hope you enjoy these recipes!

My Guy: A TN Update

I am sorry for the intermittent absences. Sometimes my thoughts and words are too blah for this space. I don’t necessarily want to look back and read where my head has been. Two weeks ago my guy had a nerve block placed. The placement allowed for a diagnosis of the advancement of his neuralgia from his trigeminal nerve to the occipital nerve. It doesn’t necessarily spread like cancer cells. In fact, the spreading of the neuralgia is usually more like a transfer, except usually the term spread fits better because it remains where it was and moves onto other nerves.

If there is good news in any of this, it is that occipital neuralgia is more common and more commonly treated. The first line of defense was the nerve block being placed. An experience in and of itself. A shot placed in the base of his skull and directly into his scar tissue from his decompression surgery. A shot that rubs against the actual skull bone. His neurologist says, “Oh yea, I am warning you that you will hear weird sounds and they will be in stereo because it is so close to your ear (your occipital nerve runs from behind your ear over it and then branches out above and below your eye). This was no joke. The sound so horrible that my guy about passed out. He became increasingly nauseated and dizzy. Thankfully, it passed and we joked it needed added to his long list of things he never expected to happen in his life.

The treatment worked great days 1, 2 and 3. He had it on a Thursday and by Monday pain was actually worse. It also brought with it is some ear pain and set Lifeup triggers of the nerve pain on that whole left side of his face. A week later he is also now getting tingles and small nerve zaps on the other side of his face. This is actually again quite common in TN in patients that the TN will “spread” transfer and become bi-lateral. But really none of this is normal. But if it were to happen, this is what the textbook says will happen. Notice I use the term textbook.

He keeps telling his neuro doc that the TN feels like it is back on his usual side and they keep dismissing it as still nerves healing. But then it is followed by a laugh because the odds of getting TN 1/20000. The odds of getting occipital neuralgia and TN are so small it has never really been calculated. The odds of returning TN so soon after MVD minuscule (not sure I buy this thinking because I read enough online to know differently). His neuro who is great, goes on to explain that nothing about TN makes sense and nothing about my guy’s case has been textbook.

His meds have been steadied and he has been pulled off inefficient ones and stabilized the ones that were/are providing some sort of relief. The next step could be a couple of different things. He could decide to sever the nerve creating numbness. It may or may not work and he would be permanently numb on that side of his face. This is usually a last resort and you never know if it is will work because there isn’t enough research or money in research of TN to see the exact cause of it. He could get radiation on the nerve.The effectiveness again is up in the air. It causes temporary numbness I believe. We could opt to head to Dr. Cohen’s office again which means surgery. There are several lesser known alternative treatments with alternative meds and therapies. All of which work sometimes and sometimes not. I am leaning toward Dr. Cohen’s office seeing him and not necessarily surgery. There are several world-renowned doctors in this practice that I believe could explore non-surgical options. Dr. Cohen is a neurosurgeon. Our neuro here is amazing and works great with their office and our family physician. I just want the best.

The emotional toll of this is still trying to be calculated every day. I promised this summer that there are tough decisions for my family on the horizon and there are. It has hit us both hard and we both admitted had either of us at this time last year had any idea that this would be where we at we would have never believed it. But we are here. We try and keep life as normal as we can for our family. I did sit down with the girls this week. I think they knew it was coming, but I like to be upfront with them as much as we can. I explained that Daddy was struggling again. They didn’t really realize things were back on or that other diagnoses had happened. I shared the kid version of all of this and explained we don’t know what the future brings. But that the outcome was all of us together and hopefully Daddy in no pain. But again it may take us trying things to get there. Hopefully, nothing like last year. Hopefully, not a surgery again. But I just wanted to be honest that we didn’t know.

He still has triggers that cause him pain; Talking, yelling, stress, cold winds, a touch to the head or side of the face, physical assertion, barometric pressure, being extremely tired or too caffeinated. It is all a delicate balance. Thankfully, his neuro switched his meds around and he is taking relatively low doses of his anti-seizure meds so he is not zombiefied. They do make him tired, but they also cause insomnia so it requires perfect timing. He is only taking two daily meds for TN and that is still loads better than last year. He has options to add meds in if needed and increase dosages.

More than anything we are trying to lean on our faith that the good will prevail here. It has to. We need it. #lovealwayswins

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.

 

Last week TN Wife, this week MR

I feel like I can write so much more freely as mommy rhetoric than I can as anyone else. It is me. Most people who know me know I am mommy rhetoric, my students know as mommy rhetoric (said as retorerick) and my family knows me as such.

I am sure you have figured by now I am crazy busy with my own school, my job school and my three beautiful girls. All three who are doing amazing. Work is good. I am absolutely in love with the classes that I am teaching this year. Life is good.

But then there is my other life,  I am a TN wife. That means on a daily basis my conversations consist of TN. I watch my husband suffer from a disease that takes its toll on him, our family and our life. From the outsideimage looking in I suppose it looks normal and yes parts of our life are normal. That is because that is the life he chose to live.

It is a choice he makes every day to go on and live our lives as normally as possible. I am sure the people he works with see him as better and I am sure the people that see him being a dad think similarly. And I would too. By all accounts he looks and seems fine.

And I ask you not for sympathy for my family. Sympathy does us no good. I ask that you keep my family in your thoughts, your prayers and enjoy your families. A good friend told me when all of this started in my most desperate of times, “your family will grow stronger and closer” and that is a blessing. Initially, I was irritated because I was not looking for blessings. Instead back then I was seeking sympathy and someone to just say it all would be okay.

And it is. My family is closer and stronger in ways I can’t place words on. A fabric built so strong around our hearts that we will forever be bonded in this unique way. So yes there are blessings everywhere and I try and see them.

But I won’t lie. I am not a saint. I am angry. I am angry at how little the world knows about TN. I am angry that we went through all that we have gone through and yet I still wake up in the middle of the night petrified of tomorrow. I know more than anything that tomorrow is not promised. I am angry that more doctors are not working on TN. I can count on two hands doctors that treat it. I am angry it isn’t in our everyday vernacular like breast cancer or diabetes. I wonder would it all be different if it was?

I understand why though. I guess. Chronic pain illnesses are often not talked about. They are the cases that remain undisgnosed. They are ones who have to suffer in silence so we don’t have to acknowledge their pain every day. They are the ones that take countless mind numbing pills. They are the ones that take their own lives looking for relief and comfort. But when you look at it that way it changes you.

So no I don’t feel sorry for myself or want sympathy from anyone. I am just trying to enjoy today, praying for tomorrow and finding my way living as a TN wife. What is going on is long and complicated. It is hard to put into words and it is hard to put out there.

But what I can and will say is in the next two weeks please keep my family in your thoughts. But even more than that keep my husband in your thoughts. Do that by living your life with love and gracefulness.

The storms are raging.

If you know me you know there is not much I don’t do. I try and do everything and usually I can. Maybe I don’t always do them to the best of my ability, but I do the best I can. Toward the end of this summer I found it would be required that I do graduate level work in communications in order to teach a particular class that I had lined up to teach. I was completely okay with it. I knew it would be hard to juggle with my PhD stuff out there. But I knew if anyone could it would be me. I also really wanted to take ownership over this course that I am teaching. Both programs started a few weeks apart. Both are on different campuses. I am a graduate student in Communications at my Alma Mater through Purdue University. But I am also a Comp/Rhet PhD student at Ball State, so there is a storm brewing here.

8302c834209e3f2e9e69862c8ba968b7Then you have my new life and I purposefully chose those words. My family is still in a deep recovery from TN. We are sorting out the quickness with which our lives were flipped. We are getting to know one another again. We are finding ourselves relying on one another more than anyone else. No one but the four other people I live in my house with understand TN and what it has done to our lives. It is only just in the last month or so that I have even begun to open up about a lot of it to anyone other than a few extremely close friends. My own daughters I am not even sure they are there yet. And my husband. My sweet, strong husband who has endured more than any human should ever have to. He is coping with who he is after this. My husband who was the most even keeled, kind, and quiet man is now faced with anxiety, anger and uncertainty that he is trying to figure out how to cope with. He is coping with the discrimination that comes with an invisible disease. Cruel and intolerable discrimination. We also are all coping with this idea that he won’t able to ever be who he was before last November. His surgery worked. His surgery didn’t make it all go away. He lives and functions by daily meds. Meds that cause horrible side effects and issues. And we are on this roller coaster of new meds, side effects and meds to help with side effects. It feels never ending sometimes. But more than anything it leaves him exhausted and irritable. But not the kind of exhausted and irritable after a hard day at work that all of us experience at one time or another. Instead it is an exhausted and irritable that is hard to even explain. We are assured he will get to a good place. It just takes time. But his headaches last for days. We constantly have to watch out for triggers for his TN which are noise, stress, fatigue and anxiety. All things that happen regularly in life.  So there is a storm brewing here.

This year I have a 7th grader, a 5th grader (both middle school) and a kindergartner. That in itself is a storm of homework, piano lessons, softball and dance. Oh and braces, dental appointments and doctor appointments. And just being the kind of parents we have always been. Especially on days when we are tired and angry. Or we are ready to just go to bed at 4.

And finally my job. My job which is so demanding (that has no negative connotation here). I work well over 40 hours a week. I love my job and with every single bit of my soul I place all I have left here. So there is a storm brewing here.

So everywhere I look there are storms. I want to do it all, but in doing it all I am losing something. My family. My girls. My sanity.

I had to look at my life and see what I could release that would let me breathe a bit. I just needed to catch my breath and I was drowning.

It was my PhD. Now before you feel sad on my giving this up. Don’t. I didn’t give it up. I went to my program chair and asked what kinds of options I had. I plead and begged for mercy. I didn’t even know what I was asking for, but I knew I needed it and I knew this is where I needed it. The decision went before a a graduate program chair and committee and it was sent back that I could defer my program for a semester and they offered me another if needed. I was given until January, but also until August 2015 if needed to try and deal with life. To search for normalcy.

I am not so naive to believe that this search for this elusive thing that doesn’t exist will be found. Normal is what we make it. For me right now my normal is 63389b66f058a0b9801131a8f2bed4d2emotional chaos. But it is fully managed. I know once the physical manifestation of my heart (my husband) is better, I will be better. And I am sure many will jump on me for saying pursuing my PhD is selfish, but it is. It is for me right now in this moment. I am not doing it to advance a career. I will likely not receive compensation for the advanced degree because my chosen field doesn’t practice such a thing. My hope is that my position between high school teacher and college instructor will eventually advance the thinking on this particular topic. But I gotta do it and I know I will. But right now I am a wife first. I am a mother first. I am a teacher first. All I know is that I will do it. I don’t know how and I feel insecure and lost without a direct plan. But I won’t let it go. I can’t. I won’t let TN win that way.

Plus I know I am a fighter. I always have been. I wouldn’t have made it where I today without fighting the whole darn way. I will continue to fight and fight. And when I can’t win and the storm takes over I will use a darn tarp.

It sucks. Storms suck. But I know they make us who we are and I know more than anything I would not be surviving this storm without the storms I had before this. Love will win this battle too. Love for self, love for the love of my life, love for my career and love for my dreams. Love always wins. It all feels so impossible, but in the end it always wins. And maybe some of this me convincing you  is actually me convincing myself. I am not sure. I just know it has got to get better. But I get confused because we are better.

“To move forth and grab your destiny is admirable. To shape your own future with the strength in your fist is beyond that.”
S.A. Bouraleh

50 Days of Truth.

Over 100 days ago I accepted the 100 Days of Happy Challenge that I gave to myself. I wanted to try and find happiness. It came when I needed it. Well I still need it, but it came at a time where I was trying not to get sucked into the black hole that TN has carved out of parts of my life. 100 Days of happy forced me to look and see the good in every single day and every single way. And I am glad. But I also struggle because it was/is carried out in social media which means it can come across as just seeing the beauty in my life.

I don’t like that. In fact, I find myself irritated when I am not being my authentic self in my social media world. I don’t want everyone to always see and know my pretty parts and not equally represent the not so pretty parts. I am real. I am 100% real. I make typos and grammar mistakes on every single blog entry. My pictures sometimes show my house not so neat. My husband and I fight. I don’t always aww and coo over my girlies.

So to counter balance the happiness that I just spent last 100 days relishing in I am creating my own campaign and it actually may already exist somewhere there in the internets. But for me it is new and it based on the truths in my life. My imperfections at their finest. I am not only going to embrace them, but welcome them. The need for perfection can kill.

“The most important kind of freedom is to be what you really are. You trade in your reality for a role. You trade in your sense for an act. You give up your ability to feel, and in exchange, put on a mask. There can’t be any large-scale revolution until there’s a personal revolution, on an individual level. It’s got to happen inside first.”
Jim Morrison

I am 100% okay with being imperfect. I am also 100% okay with sharing my truths so welcome.

Day # 1

truth1

Here she is. My # 3 who was very mad because no one will play with her. This is despite the fact that we have been playing with her all day long. In this moment she is shouting, “No one even listens to me.” I grabbed my camera and she started waving furiously and shouting, “No.” And even though I find these fits of independence to be an annoyance and sometimes a hassle.  I know that this is a 5 year old’s way to assert herself and to find her voice. So we let it play out and we pick our battles. Some are worth it, and some are just better to not. Her outfit today, on Sunday, is just not. Hence the shades of aqua green, florescent orange and tie dyed red shorts.

With that…. #50daysoftruth