Chiari Continues…One Wife’s Story….Rethinking

I haven’t posted in a while because I have been trying to decide if my story is really helping anyone out there.

I started this blog with the intentions of sharing my husband and my life of living with Chiari for the last seventeen of our thirty year marriage.

I have had some wonderful feedback….but also some negative feedback as well.

So I am taking this to the readers….do you want to hear more? Should I continue?

Is my story helping any of you with your own struggles in this crazy life?

~Chiariwife

Chiari Continues…One Wife’s Story… Alone

Canada, the North Woods…that has always been my husbands first love. The guy vacation that happened every year until one of his brother’s married and his wife scaled it down to every other year. Good for her I thought…but even on those off years my husband would only vacation up in Northern Minnesota to feel the adrenaline rush of hooking into a huge Northern Pike. Even before Chiari he would never ever consider any type of vacation that didn’t include fishing. That was fine with me until Chiari took over our lives.

Now that he no longer seemed the slightest bit interested in spending any quality time together due to always feeling sick or tired, I felt that same feeling should apply to his trips up North. WRONG! He still had the ability to pull it together to travel hundreds of miles by car then fly for another couple of hours by float plane to spend a week on a deserted island in the middle of bear country. All this for the love of a fish! He endured cold nights, storms, and rough waters while sleeping  on the ground in a sleeping bag inside a tent!

So obviously this left me feeling confused and yes, very hurt. In my mind if he really loved me he could also find some of that energy here at home to spend time doing things with me. This was the beginning of some of my hidden resentment that would spill over into our lives in the future.

But I always wanted him to be happy and I secretly felt that in some way if I allowed the trips he would love me more. Silly I know, but I was always just trying to feel like he loved me again. Of course it never worked…I remember one year before he left I had made a statement that this trip should at least buy me a week of him being happy and nice upon his return. He wasn’t back two days and he was despondent hidden away in the bedroom after another lovely bickering session. I was left feeling dejected and sitting alone once again in my chair in front of the television.

A few years ago while he was in one of his depressive states he confided that he had to over medicate for those trips. But the only real thing that he had left to live for was the tranquility and exhilaration of those fishing trips. He tried to explain to me that he did love me but that he just couldn’t give any more of himself. He went on to say that every day it took all the energy he had just to fight off the pain and to try to stay alive as he fought the ravishes of torment that Chiari put upon him daily.

I understood what he was saying and I felt like I was being selfish not to allow him to enjoy the only thing that brought him true joy in this world. But at the same time it cut deeply that I wasn’t what brought him that happiness.

I felt so alone with no where to turn….I wondered how long I would endure living a life loving someone so much and not feeling that love being returned.

This stage is called alone….

~Chiarwife

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~ Chiariwife

Chiari Continues…One Wife’s Story…Abandoned

Time has a way of running together after a while. I never was a really good person to estimate and keep time. I could say something happened the other day and it was three years ago, or vice versa.  I know that as the months started turning into years there were a couple more jobs lost in the process. Always the employers fault of coarse…it couldn’t possibly be that fact that my husband was miserable everyday and projected that off into every aspect of his life.

I’ve often wondered about those people that have gone through some tragedy in their life and they rise above it with such positivism and grace. They seemed so heroic in the face of fear to me. In my home we were handling our unfortunate situation with anything but grace and positivism. It was more like anger, fighting, blaming, and faultfinding with one another.

Family members on both sides were quick to point out our shortcoming in handling the situation. Always offering up advice to look on the bright side, strengthen your faith, pray more, go to church more, believe harder. It was easy to say when you were not the one living day in and day out with the demon named Chiari.

Chiari mocked us and laughed at us around every corner. I was starting to believe that Chiari wouldn’t stop until it had torn us completely to shreds with nothing left to show of our lives but the carnage of a broken life together.

My mother-in-law was to be remarried and she wanted a small wedding with just her immediate family to celebrate this new event in her life. My husband had gone up the night before and was to meet me at the wedding the next day. Oh he met me alright….highly over-medicated…to the point where he was dosing at the dining table and he could barely get the fork into his mouth with his food. He was slurring and dropping food everywhere. It was quite embarrassing, but at the same time I felt like they needed to see what I had been dealing with for quite a while now.

See this had become routine to come home from work and to his ease the pain by  just dosing up on meds and then spend the rest of the night in a zombie like state. Barely functioning dozing on and off in any position …at any time…while doing anything. I was so sick of watching this night after night that somewhere inside I was happy that they were witnessing it now.

One of his aunts was just so upset that he was in this state….she was angry and said something like ..”well it doesn’t matter what kind of pain your in you shouldn’t be acting like this” , and she would be correct. In reality I had felt like his family had abandoned me in my time of need, I needed help handling him. They had lots of suggestions but never offered any help.

I hate to say I did get some inner satisfaction leaving him with them for the afternoon while I took off after the wedding to shop with my daughters! Lets see how they survived a few hours dealing with what I lived with every day!

This phase is called ….abandoned…

~Chiariwife

Chiari Continues…One Wife’s Story…Frustration

chiaricontinues

Just like I predicted the work arrangement between my husband and my brother-in-law was short lived. They were just not in laws but they had been friends since childhood. I had heard lots of stories over the years of how they coon hunted , deer hunted and found many a morel mushroom together. But between the quick temper that my husband had and the quirky personality that my brother-in -law had the situation was doomed from the beginning.

So now after just a few months my husband was jobless once again. Well, you can imagine my furry and frustration at this point. NO WAY was I going to work all those hours again, after all it wasn’t my decision or fault that he had gotten himself into this fix.  So Chiari,or no Chiari, he had to work at this point.

Some may say I was heartless but I felt he…

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Chiari Continues…One Wife’s Story…Frustration

Just like I predicted the work arrangement between my husband and my brother-in-law was short lived. They were just not in laws but they had been friends since childhood. I had heard lots of stories over the years of how they coon hunted , deer hunted and found many a morel mushroom together. But between the quick temper that my husband had and the quirky personality that my brother-in -law had the situation was doomed from the beginning.

So now after just a few months my husband was jobless once again. Well, you can imagine my furry and frustration at this point. NO WAY was I going to work all those hours again, after all it wasn’t my decision or fault that he had gotten himself into this fix.  So Chiari,or no Chiari, he had to work at this point.

Some may say I was heartless but I felt he was being irresponsible. To be totally honest back then in our thirties I didn’t really grasp the whole Chiari thing anyway.    I’m not sure he really did at that time either. Anyway he found another job but it was really taking a toll on him. Construction….at least he was being the foreman on this job for another friend. But he had no short term memory at all so I  suggested he write notes throughout the day and that seemed to help.

Our lives began to become routine again…work and then for him sleep. That was about it. He was becoming very withdrawn it was like watching someone slowly slip away and no matter how hard you tried you couldn’t quite get your arms around them. Obviously this started to take a toll on me also. I missed the man I married. I missed his smile…I missed the way he use to look at me…now all I seen in his eyes was pain and anger. It didn’t matter what I said I just couldn’t get a response from him. It seemed when we did connect it turned to anger out of pure frustration with the cards we had been dealt.

A couple of years ago at Christmas my husband tried to reconnect with my brother-in-law it was now maybe about fifteen years later. But my brother-in-law wasn’t interested in any type of friendship at this point. It was hard to watch my husband shed tears after all these years over a friendship that couldn’t be repaired. Chiari takes a lot from you…not just your energy, your productivity, your love of life. It takes your friends and family also. It leaves you alone with your pain and no way to escape.

I was wondering how long he would last working? I was scared that we might loose everything. I think I was mostly scared that we might loose each other. I was madly in love with him but I was beginning to feel like his love for me was diminishing. The tighter I seemed to try and hold on the farther away he became. My new normal was working during the day and sitting alone at night watching Television while he slept in the other room. I was becoming very lonely, something I was not accustomed too.

This phase is called frustration…

~Chiari wife

Chiari Continues…One Wife’s Story…Disappointment

Disability a new concept in our home. My husband and I were both hard workers, coming from middle class families that is the only way we knew. We filed all the proper paperwork…met with the officials from the Social Security Office and answered all their tedious questions. My husband had worked hard his whole life and paid his fair share into our system so we naturally anticipated no problems in now recouping some of those monies.

In those early days I spent a lot of my time watching my husband so hyped up on pain medications that he ran like a whirlwind but accomplished very little. It seemed he was always moving and starting some type of project but follow through and attention span were limited. More often than not he would end the day exhausted just from the adrenaline rush of the around the clock nonstop pain pills. This vicious cycle was anything but productive.

When I opened the first of many denial letters for disability I was angry and confused. Did they have any idea the state of manic my home was in. I could only moonlight and work overtime for a limited time. I was only one person and this load was starting to affect my health also. It was during this time that I first started noticing signs of Temporomandibular joint syndrome (TMJS), it would take many more years before I had a correct diagnosis though.

Eleven months into our fight to gain disability my brother-in-law was negotiating with my husband about going to work with him. He was opening his own construction company and he was aware of the medical situation so they thought maybe it would work out. I however seen a train wreck waiting to happen. My husband had no attention span, no patience, and lately no filter from his thoughts to his mouth. Family members usually mean well and think the understand your situation, but unless you live with Chiari it is a tough one to explain to people. Just because you see my husband out somewhere socially and he smiles and makes conversation…he looks fine on the surface except for the huge scar down the back of his head. If you spent some quality time with him and scratched past the medication induced surface you would find a frightened, angry, hurting man.

After eleven long months of me working myself into the ground he threw in the towel on the disability. I fought as hard as I could to derail this train but I lost the battle. Needless to say I wasn’t happy about it and I voiced it quite loudly. I emphatically told my husband if you do this I will not work like this down the road so you can try disability again.

I was tired…I was angry…and I too was having physical problems and it scared me beyond belief. I still hung on to my faith in God but I must confess it was getting harder to do so.

This phase is called…disappointment….and at this time I was disappointed on every level.

~Chiariwife

Chiari Continues…One Wife’s Story…Acknowledgement

Regardless of my unwillingness to relent on trying to pray away my husband’s pain it kept pressing forward. Eventually I had to admit to myself and to him that once again we needed to seek medical advice. This time around I noticed that the physicians were not quite as hopeful, they were not offering up surgical remedies or any remedies really. All they talked about now was managing the symptoms of headaches, lack of attention span, and of coarse the pain. Was I missing something? Was this all the medical profession had to offer was a boat load of pills and some weak electrical stimulation devices for minimal pain relief? This was absurd!

So here we were bouncing from one pain specialist to another wracking up more medical bills and getting no solid answers as to how to stop this madness. After all my husband looked fine, his incision was healing nicely, all the scans looked good. So he should be on the mend and moving forward. I have to admit even I was baffled at this time. “What was his problem? Why was he still in pain?” I was having my own doubts about his health. Shouldn’t he be showing some signs of improvement?

He now not only complained of nerve pain down his arm but the total left upper quadrant of his body, including his neck, face, and scalp! So now he was getting worse….I couldn’t wrap my head around it. Friends and family that in the beginning were so supportive were loosing interest in hearing about how the pain wasn’t subsiding. I felt like they were disappointed in us in some way. After a while I think when people asked I just started saying he has good days and bad days. No one wanted to hear that we were spiraling out of control. I didn’t want to hear it myself so even I would try not dwell on the pain he was in. Until one doctor visit when what I witnessed could not be ignored.

He sat on the exam table and explained for what seemed like the billionth time about how he had a burning pain down his left are and it traveled throughout his face and scalp, but he didn’t have any topical feeling in the same areas. The physician stood behind him as he was explaining all of this. My husband had his shirt off, while he was talking the doctor took a small pinwheel like instrument with little needles protruding out of it and swirled it round and round on the left side of his body. He never flinched….the doctor asked “do you feel anything?” He said “No”. The Physician then very lightly touched my husbands right side with the pinwheel and he about flew off the table. The physician then took the pinwheel and let me barely touch it with my finger….it was super sharp! It was then I knew we had a real problem that didn’t look as though it could be fixed. Now I was getting scared.

What were we going to do? How would he be able to go back to work? How would we support our family?

This phase is called….acknowledgement….at some point it will happen…

~Chiariwife

About Me…

I have had a lot of followers from different social media venues message me asking where I am from and wanting to know more about me. So here goes…

I reside in Southern Indiana close to Louisville, Kentucky. We are called the Sunny Side of Louisville, I’ve always liked that. If your ever in the area you must visit the Big Four Railroad Walking Bridge. More that likely you will run into me on it.

I have two grown daughters that reside nearby in the same area. I live with my husband of thirty years…the last seventeen we have battled Chiari. We are helping to raise a now seven year old boy that has been in our lives since he was an infant.  That’s another story in itself…I love him as my own.

I work full time and then some on the administration side of the medical field. I love cooking, writing, reading, and my latest pleasure photography. I have been trying my hand at sports photography cutting my teeth on a Mighty Mights  Football Team. It’s been a blast!

I am planning on attending the Columbus Indiana walk for Chiari on September 19th. I hope to meet many of you there.

Blessing to Chiarians Everywhere!

~Chiariwife

Chiari Continues….One Wife’s Story… Faith

I was raised in a good Christian home believing in Jesus and all the powerful miracles that He bestows upon his people. We were the family at church on Sunday morning, Sunday evening, and Wednesday mid week service. On many Thursday evenings we would visit a neighbor church. So the Bible and all the stories in it that contained healing’s were no stranger to me. A few years into our marriage my husband also followed the Christian faith. We were baptized in the name and washed in the blood of Jesus!

My initial reaction to my husbands news that the piercing nerve pain shooting down his left arm was back was that of avoidance. I just would not address the subject, when he brought it up I would just say “hold tight to your healing, just keep believing,” After all as a seasoned Christian isn’t that we were are suppose to do?

The physicians had another explanation for what was happening in my husbands body. They called it shock to the nervous system from the trauma of the surgery.   I listened as the surgeon went on about how so much trauma had been put on my husbands system that it went into overload. The nervous system temporarily just shut down. So the signals of pain were not being transmitted to the brain, they were held in a suspended state. As his body became more acclimated to the new state that it was now in the system was beginning to fire on all cylinders again.  Thus the nerve pain was now transmitting it’s signals to the brain. “That can’t be, he has been healed!” Is all I kept saying to myself.

Now the Christian  explanation was quite different. Faith….we needed more faith. If more faith was what we needed than more faith is what we were going to get. I took post-it notes and wrote every Bible verse I could find about healing and plastered them all over the house. I would read them out loud daily. I would encourage ….or maybe insist that my husband do the same. If we could just tap into this faith then all of this would be over.

The pain was rising and the pain medication was increasing at a rapid pace. I put my husband on prayer chains…I had prayer partners come to my house to lay hands on him and pray. We fasted and prayed…we had prayer clothes anointed and prayed. I just knew that God was going to give him his healing back. After all if we would of just had enough faith he would never had lost it.

The Chiari demon was not going to win this battle. We were at war every second of every day and prayer was are only defense.

This phase is called …….Faith