A Window In: 3:03 a.m.

It's 3:03 a.m.

I'm awake.

Really?

More than words than can express I want to be asleep. Physically, I've felt awful all day. I thought surely I would sleep like a log. It isn't to be.

Sleep is a mystery to me these days. Sometimes I sleep 10 hours, and other times it's completely evasive.

My eyes feel so heavy I can barely keep them open. But my brain is awake. I try to close them and breathe deep. Maybe sleep will come.

It doesn't.

My mind spins around wondering why I am so sick today. Breathe Faith, breathe. It's all okay.
But I really want to sleep.

I feel light headed and weak beyond measure.

Thankfully it is daytime in France and there is a surf competition on. It's a nice distraction to this wide awake wickedness I am experiencing.

The words of my neuropsychologist ring in my ear. Write about my experience. Well, my experience right now is tough. Sick and tired. I want to be well. I want to believe I am healing. It's hard to grasp at 3:03 a.m.

A window in - confusion

The fun part about writing this "confusion" window in, is that I wrote it earlier and now I have no recollection of what I said. Confusion 101.....

I often don't remember what you tell me. You may hear the same story over and over again and I have no recollection of telling you. You may show me a new outfit and I comment on how much I like it and then each time you wear it, it's like I've never seen it before. If we just meet, or even if we've been acquaintances for years, I can pretty much bet I won't know your name....even if I ask 10 times.
I get lost. I get lost on streets I've been on a million times. I go out to run an errand and forget why I left the house. At my worst I have been so confused I just cry and cry because I don't understand anything anyone says. I even lost about three months of memory never to be retrieved again. Some days now I feel almost as sharp as a butter knife. And other times it's more like a wet cotton ball. I turn on the kettle for tea and then go outside to do something and come in wondering what that loud noise is. I walk in circles in the house trying to remember what I was about to do. Sometimes I forget to pay bills and other times I pay them twice. Kennel customers get anywhere from no return call to the same call returned multiple times. When I vacuum I go over the same area or room many times because I forget if I was there. And I won't even disclose how many times I repeat steps in the shower because I can't remember if I did them. When it comes to hygiene, repetition is my best friend. I can no longer work at my job so I'm home most of the time. Most people don't see this part of me. I fake it pretty well. But its' hard. It's really hard to feel like your brain just doesn't work and at any given moment can get so confused that it can't even answer basic questions or know where you are. It sucks. A lot. But thankfully most of the time I cope okay and my confusion is rather humorous (or annoying if you ask my 16 year old). 

A Window In - pain

I just realized that I wrote more of a narrative instead of a window in. I will leave it on this entry, but move the narrative writing underneath. Here's a glimpse inside the pain window:

As a chew my dinner I wonder if it will help the nausea or make it worse. Did I take pain medicine recently? Surely I did. Honestly I can't remember much as the burning/pounding/swelling in my head has drowned out any memory or reasoning. I really wish whatever I maybe took would work better. Or the nausea meds or something. The car ride from Portland felt like a torture chamber. My head burns and feels like it is going to explode. The sound of my husband's feet feels like a horse is running through the house. I can hear each time he moves in the kitchen. It is so very loud. As are the cars a block away and the train that is even farther, as is the sound of the keys as I type. It's a loud world. There went a car. It was loud too. Maybe the keys are getting louder. Maybe I'm just nuts. When I chew my dinner it hurts my head in a different way. And when I move it feels like my dinner may just come up. I wish somehow I could walk without touching my feet to the floor. Maybe if I could glide across the floor it would hurt my head less. Something fell to the floor and made a bang. Pretty sure I just died a little inside from the spike in pain. Oh sweet doggie, can you chew off your toe nails so they are not so loud. Speaking of doggies, one across the street can you please stop barking? Surely my food is digested enough so I can lay back down because if I sit another minute my head might explode into outer space. Luckily I make it to supine without retching or exploding. Deep breath. Oxygen is good to help the pain levels go down. Whatever they say, it doesn't work. But it lowers stress so that is an added bonus. Anyone wanna step on my foot to distract me? That might help my head pain. Rats. Guess I don't have any takers. At least the dog isn't prancing and the world seems a little less bright and loud. At least for a moment. Yay.

I wrote this yesterday when I was in quite a bit of pain and now tonight after a trip to Portland to OHSU via the I-Cry (I-5)it is just ridiculous. It is hard for me to write about because the pain is truly beyond words.

I open my eyes in the morning. The first activity as I lie there adjusting the body to lesson the back and hip pain from sleeping all night, is to check on the head pain. The hope is that by some miracle I awake one day and it isn't there. This has yet to happen. It often starts off on the lower end of the switch and can worsen as the day goes along. When it begins the day screaming I know I am in for a doozy.

What does it feel like? Well, it's so hard to describe. It doesn't feel like any pain or headache that I have felt before. I refrain from saying, "headaches" because it doesn't go away. It's a single headache since March 20, 2011. There hasn't been one pain free day. Just because I have days where I laugh and have fun and do things in the community doesn't mean it isn't still there. It is. I've just learned to live with a pain that I never thought possible.

In trying to describe it I seem to often say that it feels like my brain is on fire, or that the lining of the brain is inflamed and sloshes against my skull causing extreme pain with every movement. (And extreme nausea, light and sound sensitivity as an added bonus). Sometimes it feels like if my husband drilled a whole in my head some pressure would release and I would feel better. When the pain is off the charts and I can barely move and just lay in bed in tears praying for it to get better, I say that it feels like an alien is trying to get in or out of my head.

But really, what does it feel like to have a chronic head pain for years and years? It feels terrible. It sucks. It makes me willing to do or try just about anything to change it. The way we interact with the world is through our brains. My brain feels like it's on fire. Like fiery mush. Makes life a bit challenging.

I hold on to the belief that this too shall pass and someday the pain will go. I am not the only one dealing with chronic pain. So many of us do. Mostly silently. I speak up in hopes of helping others and making a difference. Putting words to how hard it is to be in pain 24-7, but how we do it anyway.

Getting up and making the best of the day is all there is to do. Somedays just getting up is all that's possible. Other days there is more energy and tolerance for the pain and some glorious days it isn't too bad. But no matter what it is, one just keeps going. There is so much more to one's being than just this body ---- thankfully. Holding onto that gets me through the day. Finding joy in whatever I can makes the days memorable. And giving thanks for as much as possible.

Pain is a drag and I desperately want it to go away. Along with the head pain, the nerve/joint/muscle pain can take a hike too. But regardless of if it is there or not, I will not let it define me. There is so much more to me than this pain.

A Window In - doctors, tests and insurance companies

Had another outpatient IV treatment yesterday so I am a bit more out of it than usual. I wrote this last night after the treatment. 
This next window in will scratch the surface on being really sick and having to navigate the medical system.

Today is the day of my last treatment. I wake after crappy sleep and really just wanna hide under the covers. I want to feel happy it is the last treatment but it's the last one because it didn't work enough. I am grateful there has been some improvement, but wish it had helped the body to turn the corner to health. The next treatment strategy is to be unfolded soon. I loathe not knowing and waiting.

There is little energy to straighten the house and do needed chores, which means I will conserve the energy and let everything else go. Rides arranged. No energy to pack food. Will eat from a can combo'd with terrible hospital food. I wonder if I will get the wonderful staff or Mrs. Grouchy Pants. Either way it doesn't matter. My sweet friend will drive me and plans to stay until the meds kick in and I go to sleep.

First comes the IV. My nurse gets it in without difficulty and then the typical massive spasms that ensue for hours on end are manageable in comparison. Pre-meds taken orally because IV it feels like acid in my veins. Once everything kicks in I drift into sleep. Thankfully, as I am utterly exhausted.

At some point though I have to make two trips to the hallway to find cell reception to try to schedule a PET scan that must happen tomorrow and the records must get to Portland before the Friday appt. Countless phone calls to technicians, insurance reps and doctors (maybe 10 calls total) have gone into this. It's beyond hard to talk on the phone when the brain isn't processing information and the person on the other line often has little patience. Sometimes they are kind and patient, but not usually. Plus with having information processing so difficult, understanding and remembering what they say is not easy. I should have a notebook in my purse, but I don't. The plan is to start being a notebook girl.

Another thing that would make life easier is if a doctor's office would do something right the first time. I can't express enough that being sick is one thing, but arguing, pleading, defending oneself against rude staff is just unthinkable and exhausting beyond measure. There are kind people but I must they are the exception and not the norm.

Once authorization for appointments happens, they get scheduled, you arrange appointments, then you have to fill out paperwork, gather other paperwork to bring and intelligently get your thoughts together to make the hard-fought-for appointment worth it. All the while hoping you understand them, they understand you, and no mistakes or misjudgments are made. There is is also the hope that whatever the plan is it won't cause more harm than benefit. This takes a Herculean effort.

There is fear too, because doctors don't like if you are unprepared or not clear. To say it is hard to do both of these things when dealing with a brain with communication issues, is the mild understatement of the year. Breathing into the fear and trusting it will be okay is key.

Throw in the mix there may be fear or a degree of PTSD in seeing new doctors based on how you have been treated over the years. (More breathing and visualizing is necessary.) And then even telling supportive family about everything that happens is necessary and it is exhausting.

Calling, scheduling, arranging and going to the doctor is one of the most maddening and exhausting activities for a sick person. Let alone appointments that require travel in the car on what I have lovingly named the I-5, the I-Cry. I often feel too sick to go to the doctor. It feels like it's too much. Because it is.

But there seems to be no either choice.

I have such compassion for all the many women, men and families that have gone through this with themselves, their beloved parents or their children. It truly is challenging at one's core.
We try to make the best of it. Self talk that it will work and all be worth it, telling jokes, scheduling a visit with a friend along the way, but the reality is it's really hard.

I understand it's all necessary. I'm very grateful to have access to good medical care, insurance and family support. It's just exhausting and overwhelming at times. I will keep believing and trusting that this all will be worth it and I am on the path to wellness. That my body is doing what is to be done in order to heal. The honest truth is I'm tired of it all and really hope this chapter is coming to a close. 

A Window In - Communication

My neuropsychologist wants me to write about my experience of having issues with my brain function. He says being able to articulate what many people can't (like in the instance of a stroke) could be really helpful to people and their families. I used to be a highly intelligent and articulate nurse and a loved to write as a hobby. Not sure how this will unfold, but here is a try. Keep in mind that I work really hard to write and proof-read. If there are still mistakes...oh well. Upcoming ideas for topics include grief and loss, fear, pain, coping, doctor visits, overstimulation, hospital stays, reading/writing, gratitude and simple joys. (I'm simply saying this so I have a reference to look back on when I write again). 

I wrote this last night after a long day of communicating. I was really exhausted and in a lot of pain. This was how I was feeling. Writing about one's feelings/experience without censoring is really different. 

This sub-series will be "A Window In."

When you talk to me it's really hard for me to understand you. I hear the words and they go in but they don't always make sense. Or some of it will make sense but then all of the sudden I feel confused. The more I try to understand the more frustrated I get. Maybe I interrupt or repeat things. And then you get frustrated. And it spirals down from there.

It's hard. I used to be really smart. I was quick, intelligent and articulate. I could follow and remember all that was said and engage with you for hours. Now, if you talk to me and music is on, I don't understand. Or if there is a loud noise, or a car goes by or a leaf blower interrupts my thoughts, I forget. Or if I'm fatigued or stressed it's even harder to understand. If I'm talking and you interrupt I forget what I am saying. If there are multiple conversations happening I will likely miss all of them. The harder I try the worse it gets.

My brain needs conversation to be slow and quiet with no distractions. I need tons of time to process and understand the information. The more you repeat and give examples the better. And even then, I get tired really quickly. It's hard and frustrating and maybe it seems like it's directed towards you, but it isn't. It's even hard to just talk and listen. It didn't used to be this way and I desperately want it to be different.

But right now, it isn't. It could be better or worse tomorrow. I have no way of knowing. I can't plan ahead because I don't know what will happen. I can't account for all the variables that play into how well my brain will be functioning in any given moment.

You can't tell this is happening when you look at me. I may look really good. You have no idea how hard it is for me to even carry on a simple conversation. I am in constant pain in my head (like the worse head ache you could ever imagine) and I don't understand and can't remember things. If you see me crying it may not have to do with anything except being really sick and frustrated that I can't understand or be understood.

Or maybe I'm just tired from trying to process information all stinking day.

It's hard to even read and write. I want it to be easier. I want it to make sense and have the thoughts come easier. They don't. At least for now.

Going with the flow and being gentle

The goal was to write daily. Well, that is proving to be challenging. Some days it's just not possible. After a draft that went no where I am committed to getting something out. It's about the process, right? Right. Keep writing Faith, keep writing.

A few of the many thoughts running through this mushy brain of mine are around this idea that we as human beings are doing the best we can and we just need to be gentle with ourselves and others. Simple concept really and yet it seems challenging to put into practice. This idea that we can do better or be better or nothing we do is good enough is pervasive.

It's interesting to watch the thoughts as they come in and try to tell me to do something different than I am. That is especially true when I am laying in bed wishing for the aliens in my head to calm down so I can do something basic like straighten the house. Who cares if the house is messy when I am really sick? No one. Eventually the pain decreases to a dull roar and I can vacuum the piles of animal hair up. What is served by beating myself up for not being able to do something that I just have no energy to do? Nothing.

I think I am finally learning this. It's about darn time really. It's interesting to watch the change in my whole family. We all seem to push ourselves less and seem to be more accepting of what is. Sometimes we have to push because there is no other option, but often there is. Let the weeds grow if there are spiders or bees to be photographed. (This is my husband's latest hubby). It brings me joy to watch him doing what feeds him.

Doing what feeds us, what nurtures us, is quite the life changing shift really. That doesn't mean that one let's go of what needs to be done. It means creating space to be joyful, to have fun, or to let the body rest if it needs to. It means being in the flow with what is and making the best of it.

Chronic illness is a drag. But the gifts of acceptance of what is, going with the flow, and being gentle are just priceless. 

Being present

I committed to blogging a little each day. But yesterday was one of those cling to the bed begging the alien in my head to stop torturing me kind of days, hence the lack of writing or even remembering to think about writing. Yesterday success was movement without retching or crying. The simple joys.
I am thankful for access to pain medication that took the pain down to almost tolerable. I did manage to sleep and woke feeling more like a human being than an alien host. I am immensely thankful for that.

Today has brought numerous opportunities to be present in the now and appreciate all the beauty around me. The wind in the trees, the perfect temperature outside, my sweet friends and family and access to good medical care.  I did finally hear from my neurologist who ordered a followup scan to the lab work I had done. I have a call in to the insurance company to hopefully speed up the approval process so maybe I can get this done and have results before next Friday's appointment in Portland. Seems unlikely but a girl can dream.

Off to my chiropractic appointment to attempt to get a different alien to stop irritating my back and hip. Oh, the joy's of living in this body. I am grateful for it as it has to do a lot, but I really think it is time for good health. It's a coming.......

O death

Henry the kitty died this morning in Terry's arms. Henry was a sweet, very elderly kitty in the kennel that has been with us for twenty-one days while his parents are out of the country. We were so hoping he would wait until they returned. He didn't. But he did wait for Terry. Terry heard his last breaths as he entered the kennel in the wee hours of the morning, and rushed to be with him so he wasn't alone as he passed. He purred as Terry stroked him, as he took his last breath. Sweet Henry, and sweet Terry.

Terry is my elderly cat whisperer. I love kittens. Terry loves the old guys. We balance each other. As I lay in my spare room on this dark, cool morning I reflect on the words, "Death have no mercy." O death, it is a mystery. When it is to happen it just does. There is rarely any sense to be made.

It brings me back to a night in nursing school I will never forget. It was my senior year, and my very last clinical experience. It was an internship so to speak. I worked the same schedule as another nurse for a few months (I think it was three, but I don't remember). I was very drawn to the Children's Oncology/Bone Marrow Transport Unit, so this was where I chose. Seems an odd choice for a twenty-one year old. Somehow I knew that working with children facing death on a day-to-day basis would change me. And it did.

There are so many stories that want to pour in from that time, but I will focus on just one. As my memories get harder to unlock the details of my life get more blurry. But the essence of that evening I will never forget. It was the beginning of a twelve hour night shift. At some point late in the evening a nurse from the unit across the hall came over and asked for a death packet. The words rang in my ears as I said, "What is a death packet?" She replied,"Paperwork for when a child has died. Come with me." I'll never forget the walk down the hallway. We said nothing. Before we entered she told me the child, age nine I think, had died of heart disease I believe. The parents had been there for hours and had just left. It was time to prepare the body with a final bath. We entered the room in quiet. The energy in the room was palpable. I looked at the young child's body. In an instant one could tell it was just flesh and bones -- the spirit seemingly had left. It was in the room though, at least it felt that way. But as the evening passed, that feeling passed too. The nurse gently showed me what to do as we went through the paperwork and lovingly bathed this child.

Years later when I was a nurse in labor and delivery I remembered this moment. When a child comes earth side and getting it's first bath in the wee hours of the night. The energy in the room, it is so similar. Cradle to cradle. Not much difference the midwifery on either side of the spectrum. It can be sweet and peaceful or a struggle. But regardless of what we do, if it is to happen it will. The baby will be born or the person will die. To try to make sense of why is pointless. It just is.

I came to that conclusion that night. The night that changed me. I reflected on so many life experiences. Growing up with lots of elderly around me that would pass. Working in a nursing home with a children's unit for children on ventilators, with tracheotomies and severe challenges changed me. Seeing children from infancy to young adulthood facing cancer head on with their families and enjoying moments along the way, changed me. That night it all came together though. I decided that death was just what it was. Not something to fear or run from, not something to try to make sense of, and not something you want to usher in, just something that is. From then on I wasn't saddened anymore by the challenges of some families. I just met them with presence and love.

Presence and love was all I could offer. I couldn't change what was happening. All I could do was be there. From that night in 1996 until now how I view O death has been with reverence and respect and a sense of peace. That is how I feel now in the wake of kitty Henry's passing. There is a sweet sadness and simultaneous peace.

As a parent and an adult with more life experience now, I do feel sadness when people and animals leave their bodies. I know they will be missed so greatly. Sometimes teenagers die, like in this community a teen just died in a car accident, and my heart aches for their family and friends. Or when a young child passes or a loved one is taken by cancer and the children are left behind. I am not without feelings. It is sad. But it also just is. There is nothing we can do to understand why. I find some peace there, in that space.

Remembering that night is healing to my heart right now. I am grateful for those moments that changed me forever.

Chocolate and white light

I made the vow to write daily so I could start to teach the brain again to do this once loved, and now almost loathed, activity. I knew sometimes I really wouldn't want to write. Now is one of those times. I'm tired, in pain and frankly just want to pretend I live in a land of rainbows and butterflies.

Instead I am using my brain to research. "Using my brain," to do anything is quite the event these days. Kind of like trying to get a teenager to remember things.

It's amazing to think about how once I was able to get through nursing school and work as a nurse for nearly 20 years. Now that seems like a distant memory. Even trying to read what I just wrote and see if it makes sense is hard, let alone trying to understand research.

The labs I received today show positive for an antibody that can possibly point to a tumor somewhere. Now this could be good news in a way, if it is easily removed and treated, because it can cause the debilitating encephalitis symptoms I have.

Attempting to sublate any fear of the unknown through breath and imagining this challenging tangle of illness to be finally untangled and treated. I have had a sense things are at a critical mass, due to the two intense flares in two months. I also have the sense these next few weeks will be enlightening and intense in regard to investigation and treatment.

Bathing in white light.

Bathing, like a raw sprouted hazelnut mound of nut butter is dipped in chocolate. (Mmmmmm. I had one of these today).

White light....

Chocolate.....

Chocolate and white light. Sounds healing to me.

Just do it.

It's the middle of September. What year? Where did 2014 go? It seems like the last time I blinked it was 2013. After ending the very popular "Ticked Off" blog, I started this blog a year ago. It was to be a fresh start on my healing and my writing. One year, two hospitalizations and countless outpatient treatments, one post, 8 drafts later, I will attempt to write again.

I say, "attempt," because being able to capture my thoughts in the written word is very difficult. To admit that is a huge step. I think I have been waiting for it to get easier. There has been improvement, but it is far from easy. For example, I already have the urge to abandon this post. I will chose not to.

Writing used to be so joyful for me. It came easy. I was good at it. It was an outlet, a release and a way to organize my thoughts. My brain has been through so much (Lyme, Autoimmune Encephalitis/CNS Vasculitis). There seems to be no activity in which I use it that is really enjoyable. Reading, thinking, writing, and even conversing are all quite hard. But just like when rehabilitating a limb after an injury, not using it because it hurts just isn't an option.

So, I decided I will just make myself write a little each day. It may not make much sense or turn out the way I want it to, but I will just do it. I will do it because I want my brain to heal. I want writing/thinking/proof-reading to be easy and joyful again.

I know healing is happening. It is just not linear and much slower than is comfortable.