Patience of a Saint

Sleeping has been difficult lately, but the last couple of nights have been a bit more challenging. When the kids are not here, we sleep with their little dogs, Socks and Oreo. Mom and Dad have taken the kids to Lake Texhoma for a few days, so we are keeping Lizzie, Dad's Mini Aussie. Lizzie expects to sleep in the bed too. It's only a queen size bed. Lizzie is just the right size to be wrong. She's too little to stay outside and be a real cowdog, but she's really just a little bit too big to be a lapdog. She's also a little too energetic to be a house dog, but that doesn't prevent her from being one. I describe her as a cowdog for the house. All houses need a cowdog, right?

Lizzie is homesick for her dad and boys, and last night she slept between Ray and I, as close to me as she could get. This means that her feet were in Ray's ribs the entire night. Apparently, at 5am, Ray had all he could handle. He picked Lizzie up and moved her to the foot of the bed. Well, at the first sign of movement, all little dogs think that it is time to get up and go outside to potty. That's my job. I put the dogs out, and sat in the den and waited on them. In the meantime, Ray fell back asleep.

After letting the dogs in, I headed to my bathroom using my phone to light my path. Just as I reached the bathroom and turned on the light, I heard Lizzie growl behind me. Now, this part of the story happens in less than a second. I noticed Lizzie growling at a sticky mouse trap on the floor that should be in Ray's closet. My brain is trying to process why it is OUT of the closet, and as my brain thinks, "MOUSE", the mouse starts to squeal. I should also mention I have an irrational fear of mice. It's not just fear. It's more like I'd rather face an ax murderer than a mouse. I slammed the bathroom door shut as I locked it, but just as I did, I could see that Lizzie was going after the mouse. My brain was racing a million miles an hour:  "I do NOT want Lizzie eating a mouse in my bedroom. And if Lizzie gets stuck to the sticky trap, Ray has to get her off because I can't help. There's still a mouse on it." While all of this is running through my mind, I have the bathroom door closed, locked, and am standing on the toilet screaming, "RRRRAAAAAAAYYYYYY!!!!"

Now remember, Ray is dead to the world asleep. He is clueless as to what is going on. All he knows is that his wife is in the bathroom screaming as though she is being murdered and one of the dogs is by the bathroom door barking. He doesn't know the dog is barking at a mouse. He doesn't know I am screaming over a mouse. I could hear the sheer panic in his voice, but I couldn't open the door, I couldn't stop screaming, I couldn't explain myself. I just sobbed. Knowing how ridiculous and irrational the entire scene was, I still couldn't get a grip on myself. I finally managed to tell Ray to turn on the light through my sobs.

Of course, when Ray turned on the light and realized all this commotion was over a little mouse, he was a little furious. I don't blame him. I would have been furious too. Once the mouse was out of the house, I was able to leave the bathroom. I was still sobbing. Again, I know it is irrational, I just can't help it. Ray had calmed down by that point, and helped me to calm down too. Over a mouse.

Ray called from work this morning to ask what we were doing for dinner, so he has plans to come home to this crazy woman tonight. That man has the patience of a saint.

The Good, the Bad, and the Ugly

Well, despite my title, I am not starting with "the Good". We are starting with "the Bad". Mostly because I want to go in chronological order.

The Bad:

We met with the neuropsychologist, Dr. Coats, to discuss the results of the memory and learning tests she conducted on Ray. While Dr. Coats was only able to give us preliminary results, they were helpful for us and the neurologist. The tests are based on a scale of the patient's age and level of education, so Ray is being compared to other 42 year old men with college educations. Rather than giving us numbers, Dr. Coats provided us with a range of results in several different categories. We were relieved to discover that some things remained in the "normal" range, but were not surprised about the things that did not. Fortunately, Ray's memory is intact. That is a huge relief. But here comes the big "IF": IF we get it into Ray's brain, it's there. It's just a little harder to get it into his memory. 

Dr. Coats suggested making our lives as routine as possible. We have two boys in two school districts, involved in a variety of sports and activities. I serve on boards, take classes, and work - hopefully two different jobs by the time school starts back. "Routine" is difficult. It's something we are really going to have to work on. A large portion of our disagreements come from Ray claiming I didn't inform him of something, and my frustration of knowing that I did. So even though the results of this appointment were depressing, maybe the information can help us to function better as a family.

The Good:

We only had to hear the discouraging results from one doctor. Dr. Knapik, the neurologist, did not make us suffer through them again. Instead, he discussed treatments and options. The $44,000 test is off the table for now. Even if insurance does cover all but 10%. He feels like that is a lot of money to obtain a name. He was able to place Ray's disorder in a particular "clump" of cerebellar ataxias, but there is an entire spectrum within that "clump". Ray is now taking 10mg Aricept. There were a couple of different options for medications. Ray chose the one that he only has to take once a day, and has the smallest number of side effects. It's an Alzheimer's drug, and he is taking the milder dose. Even though Ray does not have Alzheimer's and his symptoms are a little bit different, Dr. Knapik feels that it will improve his thinking and memory, and if not, at least stop or slow the progression. We go back in 90 days unless we feel like things are getting worse, and in that case, Dr. Knapik asked us to call and get Ray in immediately.

The Ugly:
I took the prescription to the pharmacy Friday morning. When the pharmacist gave it to me, she asked if I had any questions regarding the medication or it's side effects. I told her I didn't think I did, unless she felt there was something important I needed to know. She noted that the side effects were minimal, the medication was for dementia, and she hoped that it helped. I almost cried. This is for my 42 year old husband. It was a kick to the gut. This can't be happening, and yet, it is happening. I barely made it to my car before the tears started.

And the BIG UGLY:
I joke that I'm a person of extremes, but it's pretty accurate. I do things big whatever the situation, good or bad. I like to think that I'm a generous person most of the time. I volunteer for committees, boards, and activities when I know my schedule is already packed. I'll do almost anything to help a friend or family member. I have old furniture and carpet so my kids can rodeo. On the other end of the spectrum, I can be incredibly selfish. It's something I struggle with daily. After Ray's appointment with the neurologist in February, I was devastated. I told my mom, "I can't believe this is happening to me." That brought a quick and sharp reprimand. My mother reminded me it's not happening to me. It's happening to Ray. All this time Ray's been the one holding it together. After I cried for days, he finally told me to, "Man up." Ray's just taken everything in stride. Until Friday. Friday was the first time he asked, "Why me?" My heart broke into a million little pieces. How do we answer that question as Christians? "It's God's will," is a horrible answer, and I refuse to use it. I know that Ray and I will probably never understand "why", but we have to hang on to the knowledge that God has a plan for Ray's life. And some days, that's harder than others. 

The Beginning of the End

A prayer was said for me today. My new friend, and I hope I can call her that, emailed it to me. Just so you know, if you are praying for me, I consider you a friend. Anyway, my friend prayed for my "gift of words". That's the polite, Southern way of saying I talk a lot. And if you know me, you know this is true. I'm okay with the fact that I talk a lot. I consider it a superior gene passed on from my Grandad, the best man, and most amazing man, I've ever known. He was a natural communicator, told the best stories, and never met a stranger. I'm proud to carry on the Bouchelle legacy. But I'm chasing rabbits. At the end of the prayer, my friend suggested I use my gift to journal the path on which Ray and I have been placed. She felt it would be a source of strength, not only for us, but for anyone else who might find themselves on a similar journey. I had considered it in the past, as writing is therapeutic and I love doing it. It's a lot like talking.

I know Ray and I are not the first to face the medical unknown, but our situation does seem somewhat unique. I am currently sitting in a waiting room at St. Mary's Hospital in Enid, Oklahoma while Ray is being tested by a neuropsychologist. Frankly, I didn't know such a thing existed.  Ray is being tested for thinking and memory skills. I'm dreading the results. Mostly, because I'm pretty sure I know what they will look like. Even when you are prepared to hear the worst news, it is still devastating to have a medical professional confirm all of your fears. After this, we go to see his neurologist who will review the results of this exam. I'm not certain if we get to hear the dreaded news from the first doctor or the second, or worse yet, have to listen to the explanations and results from them both.

Ray has an unknown neurological disorder. He's suffering from a loss of balance, slurred speech, and slower cognitive skills. Thankfully, his memory is still intact. It's not caused by a tumor, or cancer, or Multiple Sclerosis. Sadly, while waiting for MRI results on a February afternoon, I actually prayed for a tumor. A tumor can be seen, fought, and maybe even removed. Whatever is causing Ray's symptoms is vague and undefinable. We have no prognosis or diagnosis. We don't know if he will get worse, but it is doubtful he will get better. And if he does get worse, what is "worse"? How bad does that get? Will he forget us, his family? Who he is? Will his personality change? How long does it take for "worse" to get here? And the big scary question that never really leaves my mind: Will I be raising the boys alone?

For a mere $44,000 we can have a genetic test done that will name it. Insurance supposedly offered to pay all but 10%. I'm still waiting to see that in writing. It doesn't matter what the test cost, the name they put on the disease, or how many doctors we see, the facts remain the same: Ray's brain is changing. Sometimes he is irrational and angry. Sometimes we can't talk because I just can't understand what he's saying or it doesn't make sense. I often hold his hand when we walk so he doesn't fall or look like he's been drinking. He can't write a check anymore because his handwriting has become illegible. Even though the symptoms and the search for answers started long ago, here is the beginning of my blog or journal or maybe just our story.

The test is over. Time for those dreaded results...