I had forgotten…

I truly had forgotten just how therapeutic writing could be. After my last post, You moved on. We didn’t., I felt so much better. Actually I still do. The hardest part of this all for us is how easily people wipe themselves clean of you. As if we are some sort of burden because our problem doesn’t have a simple solution. I wish it did, but then again I actually don’t. The growth that has happened for my family during this has been amazing to be a witness to and be a part of.

xmas

 

Since my previous post I am not sure if it is his meds working more in harmony, the peace of knowing he is back under the care of Cohen and his colleagues or if I just feel that cathartic feeling you get when you get something off your chest. Whatever it is I seem to have found some sort of peace or I made peace. I have no doubt it is coupled with the many prayers we have received. We get so many texts, messages and just general concern that it makes me feel a little less alone. But in all honesty, he is doing well.

It is always easy to say that at 54 degrees outside and no stressors going on in life.  It won’t stay. Cold spells and stress are the worst. And we have plenty of them. Dr. Cohen has picked a neurologist to work with specifically on his case. We now have to wait. He has first access, but unfortunately that could take months. We are told it is because there are only a few who work with this and because he is sought after. He is constant contact as needed with both Cohen’s office and his neurologist here.

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Cohen did increase his dosages of neurotin so he is dealing with short term memory issues and fatigue at certain times of the day. He wanted to add in tegretol but he resisted because it requires weekly liver panel testing which he had to do from November 13 until March 14 of last year and does not want to do that. Of course, he will if needed. The nerve block seemed to cut down on the severity of the migraines and I have only noticed him complain about them about 4 times since he had that done. His biggest complaint now seems to be the transference to the right side of his face.

So yes I guess ranting in my blog helped. It always does. I just worry people get sick of always hearing it. But it is my reality. But my reality is also living in the moment. Today I got to go to lunch with my guy. A normal lunch where we held hands and talked about our future. It included TN, but there was good. There was a plan. That is my very definition of love winning because it always does.

xmas2My life isn’t perfect, but inside it there is a whole lot of perfection. 

 

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