Whirlybrain

Today I’m angry

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Today I'm Angry

I am a Registered Nurse… I was a registered nurse. Today I am a patient and I’m hurt but not surprised how my journey has been with this illness.
While I was working, I tried to treat every patient as if they were my own family members. To be honest, I left bedside care because I couldn’t stand by and watch patients be treated like they were part of some ones job. The typical Emergency Room mantra is “treat ’em and street ’em. That was understandable to me while I worked in the ER. We couldn’t “fix” long term problems but we needed to get people stable enough to get to an area where they could be followed consistently and effectively.
Today, I feel like every visit with the majority of my healthcare visits I am treated as if I were in the Emergency Room.
If you are immediately thinking.. “maybe you go to the doctor so often they don’t know what to do for you anymore”.. That is exactly why I do not go to the doctor. Maybe I’ve waited too long to go to the doctor each time and when I finally do there is just too much for them to handle?
Admittedly I don’t call and ask questions or seek help in between visits.. I only go when it’s finally so bad I can’t take it. I have seen and heard so much of “Man, this lady who came in today wore sunglasses in the office…we immediately knew she was going to be a handful” or “They work in healthcare so they have a dangerous amount of some knowledge”. I don’t trust the system as a whole to take exceptional care of anyone but I do expect the system to take very good care of everyone.
I’ve only had these symptoms for three years which is nothing compared to many of you. I had my tests, got my blood patches and went home and took the best care of myself that I could. My symptoms began to return.. I waited until I felt I could not live a quality in my life and went back for a patch. Sometimes for 4 weeks others for 6 months.
Even though it’s travel, pain and a lot of expense.. I’ve been lucky that the physicians in Texas just bring you right back and give you a patch as symptoms reach a bad point. I just don’t want to live patch to patch but I also don’t want to feel like I’m not being cared for to the best of the systems ability. I don’t want to feel like “You have the same cold as everyone else right now.” I don’t have the sniffles. I feel like I am bleeding out.
I understand I could go to the Emergency Room but my emergency room shames headaches and pushes narcotics. Narcotics don’t fix this stuff. Narcotics only make you sleepy and forget you have pain long enough to wake up at home and have the same pain.
In May it started again. By the end of June it was finally too much. By the end of July I literally begged to be seen. I was in my physicians hospital. I was eight hours from home, staying in a hotel with my husband missing work. I was there…. physically, one floor away from his office. I was being tested for something he would only order over the phone. I begged to be seen. “He can’t get you in for another 6 weeks, but seek out the emergency room if the pain is unbearable.” The pain has BEEN unbearable. I had already waited 5 weeks for the testing I just had. I don’t even cry when it hurts this bad. I know it will make it only that much worse.
I don’t want to jump the line. I’m no more important than others but HEAR ME when I say this is too much for me now. Help me.

A little birdy told me..

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Sitting in a swing..

“Beth Ann, come sit down with dad”.  He sat out there every day.  My dad, David, was the original bird man to me.  Before my parents passed away I was so lucky to live just down the street from them.  Well, I typically lived down the street from them no matter where they lived.  I kind of followed them like a baby bird I guess.  In their last house he had a small backyard with a little deck.  Mom and dad would sit outside on the deck on a glider swing they had.  It was a nice little swing, covered with a little green awning that sat perfectly facing a birding station he set up.  In last several years of my dads life I was lucky enough to be invited to sit in the swing and watch the birds.

I got my love of the outdoors from my dad.  He was an avid hunter, fisherman and loved anything to do with the outdoors.  The biggest memories of my dad watching birds though was when we lived in Arkansas.  His house was, of course, down the street from mine.  We lived in a wooded area where the streets were a single blacktop road.  His house was deep on a lane in a cul-de-sac with only one other house close by.  The woods were thick and his “backyard” was basically a small forest.  The deck on the back of the house was close to a third story high.  When you looked out all you could see were trees down below for miles.  My dad would sit out on his deck and watch the squirrels.  Squirrels are not my favorite thing to watch now a days.  They eat my expensive bird food.  More on that another time….

The woods were filled with so many amazing birds. You could hear the echo of the pounding woodpeckers and the beautiful sounds of the song birds.  He started with putting some bread crumbs on the railing.  One day there was a corn cob feeder on the tree.  He nailed it as high as his ladder would reach.  The next time there was also a single feeder nailed to the rail.  A bird feeder this time.  A cute little wooden house feeder with trays on each side.  The birds were always there.  Soon, there were multiple feeders.  Some hung off a hook hanging out from the rail while the hummingbird feeders dangled from the eves.  Eventually there were elaborate lines hung from a tree to his deck that he could hang feeders from and pull them in by a pully to fill them.

This is the location that I became fascinated by the mighty piliated woodpecker.  They are so solid and their peck is fierce.  You could hear it it’s whacking like a jackhammer on the dead trees.  Boom, Boom, Boom and it would just echo through the trees.  It’s a large bird. Best  described as the  biggest, most striking forest birds on the continent according to Allaboutbirds.com.  It is about the size of a crow.  It is black with thick white stripes down the neck and a flaming-red crest. That crest is impressive and stands up in the shape of a triangle.  You would never mistake this bird for anything else.  Once you’ve had this bird in your site you are hooked on bird watching.

When my parents moved to their last house my dad brought his feeders with him.  We were in a subdivision but it was right off a county park and large lake area.  The birds were slightly different but there were just as many.  The piliated woodpecker was no longer a visitor to his feeders but the song birds were abundant.  I started my birding life journal from this location.  As we sat in the swing, we would brag to one another about which bird we had seen and tried to one up each other with each new siting.  As the years went by and things got a bit harder I took over filling the feeders.  We became so obsessed with attracting new birds that our feeding station grew by leaps and bounds.  We tried new types of feeders and added new variations of seeds just to see what we could get to come to the feeders.

When my dad passed away I brought his feeders home to my house.  I also brought that swing.  I set up my new birding station so that I could see it well from that swing.  The types of birds I got were mostly the same as we were close to his home.  There were a few that didn’t come around because my house wasn’t as close to the woods but it didn’t matter.  As I sat in the swing watching the feeders things felt differently.  It wasn’t a sad feeling but it wasn’t the same.  I no longer had someone to compare notes with but that didn’t matter.  What I was missing wasn’t the few birds that didn’t come, it was the person I sat in the swing with.

A World without Content

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A World without Content

Content.  What is it and how can it matter in my daily life?  Another way to think about content is what something is composed of, the subject matter or text.  The story of our every day life basically…
I used to wake up in a hurry.  I would wake up, grab my phone and check my calendar.  My day was typical.  In no particular order there is always the something that happens.  You wake-up, check the calendar, ready the children, work, fix dinner and sleep.  It was typical but scheduled.  There are so many days I wished for “time off” or a day “with nothing to do”.  I never imagined what I would do if I actually did have that time.   Oh sure, I planned vacations for time off, errands to do or even time to watch a show.  We are so busy that thinking about time off from the daily schedule seemed like a dreamy thing.  Now that I have a disability there is no way I can schedule my life.  I no longer have a day with nothing to do but so much that feels undone.  In my current situation I don’t have to wake up at a set time unless I have an appointment.  The children are grown and in their own homes or at college.  Dinner is according to what happens to be in the fridge or even if I’m feeling well enough to eat.  Sleep even has it’s own timeline and it is dependent completely on how my health is doing that week, day or hour.
I think it has become increasingly important to me to set a schedule even if I can’t keep to it every day. I can’t look at it as a failure that I was not able to keep that appointment or make that event because I wasn’t well that day. Having events scheduled creates that mark in time even if it doesn’t happen for a reason. I now schedule myself to wake up at a specific time every day, time to lay down at night and try to have at least one activity specific to the days of the week. If I can’t make it at least I can see that I did have content, it just didn’t turn out the way it was scheduled.

Ahhhh, The great outdoors..

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Ahhhh.. The great outdoors

INHALING….  Deep full breath..  In your nose.. Hold it..  Did it get you?  If you haven’t been outside in awhile I need to remind everyone that spring has finally come.  I love spring.. wait, I love a warm spring.  I’m not a “chilly” spring kind of person.  In all actuality I’m not a “cold weather” person at all.  Don’t get me wrong. I love snow and the cozy feeling of watching the snow falling and mound up on the trees. I said watching.  Clearly just watching.  

I have always been an outdoorsy kind of person.  I easily get cabin fever and a simple step out of the door can clear my head of all of it’s woe’s. Being indoors for too long makes me so crazy that I could literally focus solely on the fingerprint I saw on the cabinet door yesterday.  Okay. Okay not that bad –  but I do long for the outdoors every day.  I’ve talked a great deal about being different from my family while I was growing up.  One of those things was that I was one kid who could be outside 24/7.  Don’t get me wrong… I did stay in Sunday mornings and watch cartoons.  I mean I wasn’t a maniac for Pete’s sake.  The majority of my days growing up were filled with horses and anything that involved being outside.

If I close my eyes and think back to being a kid,  I literally think about our local park, walking to the supermarket, riding horses and swimming in a friends quarry pond.  I have to remind everyone that I am of that age where the kids were basically locked outside all summer.  I joke saying that but there was a bit of truth to it.  When people talk about being afraid of the Gen-X generation there is the scary truth to the way most of us were raised.  We were literally raised like feral wolves in the great outdoors (Boy this is whole post in itself).   Turning the lights on meant the sun came up.  Both of my parents worked full time jobs and in the summer it was an outdoors free for all. 

Depending on which age range I was in I have great memories of being on the move and busy.  When I was on the younger side, our local parks and recreations department held an arts and crafts time.  It was basically a free summer camp type of situation.  There were a few college age kids that set up in the shelter house and we did things ranging from plaster of paris to wood carving.  It lasted a few hours several days a week and afterword’s it was on to playing in the park.  We had an amazing park where I grew up.  Thinking about it brings back such amazing memories.  Climbing mulberry trees, playing on the equipment and making paths in the woods.  We had the kind of play equipment that made us tough.  We had a huge barrel on rollers.  It was a monstrous whiskey barrel on its side with both ends open resting on rollers.  You would use all of your might to make it roll like a big old hamster wheel.  It was big enough that four kids could stand inside it next to each other.  We would use all of our might to make it roll as fast as we could.  Once we had it rolling so fast we couldn’t run any faster we would lay down and try to make ourselves fling all the way around.  Think of the splinters we pulled out of each other.

When I finally hit the double digits I could walk to the stables by myself.  I had gotten a pony for Christmas the summer before and all my days from that point forward were focused on horses.  It’s not even just the horses that flood me with memories but everything associated with them.  The stables, where I kept my horses were a few miles walk.  It was located on several hundred acres.  It was miles of dirt trails through the woods, a small lake with an island and many corn fields.  It was a horseback riding business that rented horses out by the hour for people to ride on the trails.  I paid my rent by helping with the horses and “patrolling” the trails.  I laugh at myself typing the word patrolling because I was as young as ten and as old as 16 while I had my horses there.  I’m not sure how much patrolling I was doing as opposed to just farting around.

Later as I got older and had children I wanted to encourage the love of the outdoors with them.  I have three unbelievable kids.  We’ve taken them fishing, river tubing, camping and horseback riding.  The oldest went rock climbing, cleaned horse stalls with me and even walked creeks as her dad and I went fly fishing.  I think of all that time outdoors with her so fondly.  So picture this in your minds…   Summon the idea of a beautiful fog surrounding mother and daughter holding hands with beautiful flowers and trees surrounding us as we enjoy the wonders of nature…..WAKE UP. Now after living this dream filled life, she hates the outside.  I raised a kid that literally hates the outdoors.  I failed to pass on the “great outdoors” gene. [ I lay on the ground dramatically throwing the back of my hand to my forehead asking myself how was this even possible…How on earth did “I”, said lover of the outdoors throw a mutant indoors gene?].   In her defense she isn’t the only one of my kids that finds more things to do inside versus outside.  I blame the internet for it not my genes.  My outdoor genes are Viking true!

I’ve talked a lot that my love in life is being outside.  Even today a simple visit to my hammock can cheer up the shittiest of days.  So much of what has happened to me medically (which also affects me emotionally) has not taken that love out of me.  I do have to admit I have had to learn to love the outdoors in a different way.  The challenges that I have faced with my health have created that need but I refuse to let it take that outdoor spirit from me.    I do what I can to foster it in my life as it is now.  I don’t get to ride a horse up a trail and listen to the sounds of it’s hooves crunching in the snow, but I do get to watch the birds from a bench or a short path and determine what species it is.  I may not be able to sit by the campfire that I built but I can sit next to one someone built for me.  I can’t put up my own tent but I can sit here typing this post from the comforts of a camper with electric recliners, wifi and air conditioning all awhile: I keep the camper door open, take deep full breaths of the spring air and feel grateful that I’ve been blessed with the ability to continue to enjoy it.