Let that fire be your light.

It’s been awhile since I’ve posted. I took a break for many reasons, one being I felt writing about my illness was causing me to be hyper focused on what I am diagnosed with. As much as it’s good to get it all out, talk about it, allow others to understand what you are going through, it was causing me distress that I could not sort out emotionally. I wanted to crawl in a box most days and shut the lid along with my cat Phil.

I never want to wallow in negativity. Life is messy, it’s never perfect and there are days where breathing takes effort. There are stresses, frustrations, tears, not showering, not changing clothes, falling asleep on the couch and popcorn for dinner. Between job loss, a meanager, being sick and the decisions about life made in between, it’s been a calm chaos that has turned into a mountain that I am just now climbing over, sweating, coffee in one hand, dignity in the other, unwashed hair, two dogs, a teenager…and lots of confusion.

Yes I smile, I have fun and do really stupid things. I am not one to sit for long, I don’t like being idle to any degree and I am horrible at small talk. This “illness’ has caused stopping points that I am not happy with. It’s caused me to slow down on some days and I am still trying to wrap my head around it. I don’t like it, quite frankly it pisses me off. On the days where I feel “normal” I want to go full speed into whatever it is my mind wants to do that day, I want to get it all done, because I know I will pay for it later and I’m not sure how long that “later” will last.

I was flossing my teeth lastnight, they started to bleed. Gross I know, but this is a reality. Bleeding teeth to you….a possible bleed out to me. Seems super unrealistic, but it’s a warning I was given that I took with a gran of salt and said “ooo-k”…..along with numerous others…so I pause and look at my teeth, I watch and wonder….nah. I continue to floss. It’s funny how my perspective on so many things I never thought twice about before has changed, these little things that most pay zero attention to, because in most cases, there is no need to. This massive bruise on my leg that is taking forever to heal, not caused by any trauma, but by walking because my veins can’t handle the pressure anymore. I am covered in bruises, every day, I am Thankful for clothes. There are moments and days where I wonder….will I be here for this next year. Everything has changed, me and my thought process. Every day matters, every moment counts, everything means more now than it ever has.

It’s hard to even comprehend what has happened over the last year. Like, super hard. The hospital stays, the surgeries, the misunderstandings, the anger, confusion, the pain…all of it. This whole situation has caused days upon days of reflections on myself, situations, others, pondering and flashbacks, some pleasant, some not so pleasant. This in turn has led to some heartache, the need for acceptance and no longer trusting in situations and others. I needed to just let things go and be ok with it, to stop trying to understand it all and let it be.

Some aspects of my life have fallen silent, while others are screaming for attention that I am desperately trying to tend to.  At the end of the day I have had to realize, I am one person, one person that has been stretched very thin and only I know what it’s like, the past, present and the in between. It’s a miracle I am still alive, but I will continue to fight, to do what is best for me and my family and not worry about the rest. What matters will come, what needs to be will be. Who wants to be there will be, if not…it’s ok!

I was given the advice to have “Hope” that my brain grows new veins and I survive this. There is no cure, no easy way out. I already have metal in my head that served no purpose and all I have to show for it is a card to present at the airport and medical personnel. Medically speaking, I am not suppose to be alive right now,  so I can either view that as the Grim Reaper disguised as my surgeon and let it crush me or let it be the gateway for a new life. There has always been a fire in my soul for a thousand different hopes, dreams and passions….I am choosing this to be my fuel!

Here’s to “HOPE” and bomb fires!

 

 

 

 

 

 

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Seasons

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There are moments, more so lately, where I feel like an old abandoned house. The kind sitting in the middle of a field, the warm sun making everything appear to have a dusty yellow hue around it, its paint chipped and weathered, with a slanted front porch, shear tattered curtains gently carried through it’s windows by a calm wind. Its the only house in the field, its companion is an oak tree in the distance, wheat swaying everywhere, a warm golden silence. A picture I would want to capture, to hold onto forever, through a lens, a view I’ve become accustomed to. A somber scenario it may seem to some, but not to me. It’s beautiful moment to share, a story to tell, but only if you can appreciate it for all that it is. It’s all in your perception.

I learned at a recent doctors appointment that constant cerebral pressure in your brain and behind your eyes can cause permanent retinal damage, even blindness. I’ve thought about this instance repeatedly for the last couple weeks. What if this happens to me? What would life be like if I could no longer see, no longer capture those moments through a lens to hold onto forever, how would I possibly be able to share my “visions”.

When I was a kid I use to dress up my dolls for “photo shoots”, you know, school pictures, the occasional adventure at the lake, hide and go seek in the front yard. My cats, they loved it too I’m pretty certain, I dressed them in doll clothes as if they were tiny little humans. It was super entertaining. This fun, became an obsession and a way for me to express whatever creativity was flowing through my brain at the moment. I failed photography class in high school, I clashed with my teacher for not being allowed free reign to be creative with my visions. Photography for me was always these moments I could physically hold in my hand, moments that when I couldn’t remember them, I could at least look at them and jog my brain for a spark. Moments that I saw differently than most that I held captive in my hazel eyes forever imprinted on paper.

If you have ever seen a reel of film burning out, when the heat hits it these tiny little black specs appear everywhere, then these holes of light start burning thought until it eventually turns into a blinding bright light, than you can relate to what it may be like to have visual disturbances. The constant black floaters, or “visual disturbances” I have block my view of certain things, like the letters on the keyboard, my phone and the letters on the computer screen. They use to come and go, but now are constant, like the reel of film in it’s first stages of burning out. There are moments of light that crack through, like when you were a kid, waking up on a long road trip, your head resting on the window, your traveling over a bridge the sun is shining through each slat on the bridge just enough to sting your eyes, quick flashes of repeated light. My grandmother always said, eat your carrots so you don’t go blind, I listened to her, I still eat them.

I see myself standing in front of this house.. I hear the momentary rush of wind across the field engaging in a delicate dance of what is left of the curtains inviting them out the window into the field for adventure, the sound of the wood creaking as if the house is settling in under the warmth of the sun about to tell it’s story. I hear the rustling of the leaves on the oak tree, inviting the tiny little swallows to rest on it’s branches so they too can listen. I try to imagine the life that filled this house, I wonder where did the people go, I wonder if anyone baked pies and put them in the window, I wonder if kids ran through the door onto that big front porch jumping off  into the field leaving a trail of laughter. I wonder if anyone hung laundry on the line in that back yard, sheets blowing about in the warm sun casting shadows across the field upon which it rests. I wonder how many sunrises and sunsets were watched from the front porch in rocking chairs as they creaked back and forth. I am always in wonder.

Chipped paint has given way to gray slats, panes of lead glass now broken giving the sun a place to rest upon it’s points, marks from every storm it has ever weathered, a rusty roof from where the rain has fallen, repeatedly. Every moment it’s ever held, the laughter, the celebrations, the tears, the joys, the silence, you can see it. It’s standing, maybe not as tall, a little to the side, but, it’s still there embodied in all of it’s character, all of it’s flaws, sharing it’s stories within the tall wheat growing around it. You can hear the volume in which it speaks where no words are needed, even after all of the seasons past, if you close your eyes long enough you can feel it all around you.

 

 

Resolutions

It’s the beginning of a new year, 2017. Everyone is rushing to make New Years Resolutions, join a gym, vowing to be healthier, work less, travel more, etc. etc. etc…..I’ve always wondered why are these things not practiced every day, whether a New Year arrives or not. I think it’s great to reflect on the year before, the moments you have shared with others, situations you have gone through, things maybe you should not have have done or things you should of done differently. These are the things that should be daily resolutions, to be a better version of who you were the day before, week before, etc..to learn from the year before. To apply all of “2016, 2015, 2014….1980” everyday.

Resolutions need to be made daily, whether they are big or small, they need to happen in order to grow, to achieve, to learn. Today I am making the resolution to go outside, even though it’s cold and dreary and I hate being cold, I need to be better about pushing myself out the door instead of looking out the window telling myself the forecast tomorrow will be better. Today I will make the resolution to go to the post office too, to stand in line, amongst the people who don’t understand personal space to grow towards getting over my “pet peeve of personal space”….besides the clerk there is funny so I never leave wishing I never went. Today my resolution will be to call my new Neurologist, who was suppose to contact me last week about my seizure study and never did.

Today I am applying what I learned in 2016. Today I will apply my knowledge of every moment that has ever transpired, every lesson, every heartache, mistake and poor choice during my existence on this earth to be a better version of who I was Monday, January 2nd 2017.

To be continued………

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The 2nd Opinion

A second opinion is meant to be just that…another opinion of what otherwise has already been stated. I was hoping for a new light inside this lampshade, perhaps an answer to the millions of questions I have conjured up over the last few months. Maybe deep down, I already knew the logistics of what would transpire. I have grown tired of feeling like a 5 watt light bulb everyday….on…off…on…off…nope still can’t see through this swamp.

My second opinion is a friendly woman, young, with a neat little British accent. “It says here, “chronic”, this means you may very well have this the rest of your life, the Eliquis you currently take is to help prevent more blood clots, not eliminate the ones you already have, you may be on these the rest of your life. But….that can’t be possible, this cannot be “me” for the rest of my life! Her concerns seem more in the fact I was given 600 mg of Ibuprofen that doesn’t help my head pain and not a high enough dosage of Diamox to control the swelling around my brain that causes the head pain. She is confused as to why my dose was only for 30 days after my last surgery as am I, well I am confused on a regular basis really. She states my Diamox has to be continued.

The routine at my doctors visits is always that, routine. Tell me how you feel, I go through my list, my head hurts, sometimes so bad I get nauseous,  walking, talking, remembering difficulties, moodiness, tired. I walk the plank, my eyes get looked at, I get my knees tapped, have to close my eyes and touch my nose. My British speaking Neurologist asks me if anyone has fully looked into my underlying cause of this “blood disorder”, if I have seen a Hematologist…check! Been there. We discuss Lupus, a discussion I have had with every doctor I have seen. It’s tiring. It’s an overdone routine. Everyone feels I have it, but nothing is done about it because of my brain issue.

We move on to some recent events I have been having, it’s a possibility I am experiencing small seizures. These “episodes” only last a few minutes. I explain what I have been feeling and I am told I am at a higher risk than normal for having seizures. She goes on to explain the variances of seizures from almost unnoticeable ones to full out seizing and unconscious. The conclusion is, it sounds like I am having them. Up next, another appointment, another “study”. Another diagnosis. More pills. Another day.

I am told that I am where I need to be, with the right doctor, a Vascular Surgeon, a person she would of referred me too as what I have is out of her realm. It’s crazy to think, what I have sitting in my brain is so confusing to the medical field. It’s scary to think my blood thinners are a band aid in hopes for my survival. Other options are another stent or a shunt to help the fluid in my brain drain as it’s suppose to instead of backing up and trying to find alternate routes. I myself would love an alternate route, a brighter light bulb and a map to get out of all of this.

I leave the office feeling defeated and just as frustrated as I always am. I get impatient standing in long lines, this is an entirely new feeling of impatient that I can’t even place into words.

Onto another day, albeit I am Thankful to be given another day to breath, I am wishful and hopeful for some magic to happen. I am over the “routine”.

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But, you’re smiling?

My lifes my motto has been “I can do it”, I think my mom and grandfather could of attested to that statement. I’ve always felt I could do anything, on my own, without help, even if at moments I wasn’t aware I needed help, I was hell bent on living life my own way, with my own rules, for my own reasons. I have always tried to see the best in every situation, learn the lesson and carry on…even with the “side eye” I would get from others. If I truly wanted to know something, I would simply ask.

I was not one to be overly forthcoming with information on certain situations or struggles. I’ve chosen to smile through a majority of things that most wouldn’t, had fun and moved along, I don’t want or like to focus on negativity. I think that mentality was instilled a long time ago, that mindset to just figure it out, make it work and be Thankful, laugh a little along the way. I remember my grandparents both cracking jokes at times when most wouldn’t, just to make sure the mood would stay positive. Albeit, there have been numerous ups and downs in my life, not so laughable moments, but nonetheless, I am still standing with a smile, even when blindsided with a major illness.

My grandmother went quite some time before letting anyone know she was sick, she didn’t want anyone to be upset or fuss over her. She cracked jokes, she smiled and sang. She made jokes about her wig, how she bought it from the back of a magazine after her hair fell out from chemo. My grandfather was making jokes in the last few moments of his life, about my niece’s dog owing him money for breaking his lamp, he had sent her a personalized bill in the mail. It was the typical behavior I grew up with, as sad as the moment was…it was true to fashion of how to be and carry yourself…all the way to the very end…do what you need to do for you and but protect those around you, do not let what ails you, rule you. I understood the humor, the smiles and why.

I’ve gotten quite a bit of commentary about my ability to smile through this process over the last seven months. I mean, how can you smile when you are sick? How can you be laughing when you are told you have a life threatening illness? And why on earth would you be out on the lake, smiling, with your family if you are having such a hard time? Who does these things? Sick people don’t! I mean it’s right there on Facebook for the whole world to see…shouldn’t you be in bed? There is no way you are sick, you’re smiling, your fine! I’m not certain why if someone is dealing with an illness their ability to handle it is not appreciated, instead, criticized.

I was let go from my job in August for my smiling face and my determination to still live my life regardless of how I felt. It was requested I provide a written reason behind posting a photo on Facebook of said smiling face and a goat, which led to hushed conversations, a lawyer on how to fire me and numerous false accusations. I mean, I was sick right? I did tell my boss my medications made me feel spacey back in July. Besides, why would I want to drive so far to get to work everyday anyway? Why would I ask for help from my coworkers after my surgery or with things I was having a hard time with? Why would I want to deal with others negativity if I had been dealing with nonsense all along? Why did I feel so passionate about protecting my coworkers and my job? Don’t I want to go home to be with my family? As my new boss had stated, it wasn’t his job to be a mediator, shouldn’t I just file for disability, I mean now I was giving the office a negative vibe. I made the mistake of being too open about my illness and the realities I was facing to people who were not genuinely interested in my well being, let alone the craziness I was enduring. I was also friends with them all on Facebook, my place of positivity.

Losing that job was a blessing in disguise, it taught me a huge life lesson that I needed, I didn’t see it at the time, but eventually it came to light. The people that I protected, that I wanted to see grow personally and professionally in the end were not protecting me. I had several conversations with management about them losing their jobs over the course of my employment, I had always stood by them even if I did not fully agree with their work ethics. In the end, the people I believed in, did not believe in me. I had to realize that I thought of these people as genuine friends, not just co-workers, to be doubted, questioned and treated poorly did not sit well with me. Eventually the hurt feelings subsided as I came to understand and appreciate the knowledge, full well knowing they don’t know what it’s like to be in my shoes and ignorance is not bliss. I can’t have that in my life.

What the public eye sees visually versus the physical reality of someone’s everyday life are two vastly different planes. Many people have a hard time grasping that terrain variance. Visual perception is the ability to interpret the surrounding environment by processing information that is contained in visible light. Reality is the world or the state of things as they actually exist, as opposed to an idealistic or notional idea of them. Judgement comes from a chosen perception without knowledgeable true facts.

I will continue to smile and appreciate one more day to breath. I will continue to live as I wish to. I will take each moment good and bad, reveling in the good days and enjoying the moment that has been given to me. My illness will not keep me from smiling, it may hinder certain aspects of my life, but it will not stop me from smiling. I know what I go through everyday and those who have chosen to walk that path beside me and truly know me understand the “smile”, even if at times you tell yourself you wouldn’t, well I’m not you, your not me and that’s all ok.

You can judge me, your perception does not affect how I live my life, how I think and breath, it just shows me how you do.

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The Advocate

Advocate: “one that supports or promotes the interests of another”

To advocate, something I have thought of numerous times over the last seven months. What exactly does it entail in it’s entirety. Am I an advocate? Are you? If so, for what and whom? Better yet, why?

I am a mother of two boys, who is obsessed with goats, cats, baking, shooting photos, someone who has always taken the most uncommon road, through the most dense forest, learning the hardest lessons. Someone who was diagnosed with a blood clot in her brain, then two, then a collapsed artery, then another. I have Chronic Venous Sinus Thrombosis and visions upon visions of my baking business taking off into new realms. You know, nothing out of the ordinary.

You need to advocate for yourself, get a second opinion they said, while I stare at my MRI and see plain as day where fluid does not flow through my brain. What will their second opinion be of I wonder, will they advocate for me, will they rescue me from something that could potentially take my life. Will they help me survive this so I can live out my passions and see my kids grow up. Unfortunately it took seven months to realize that the advocacy will only come from me. I woke up in ICU after having a stent placed in the right side of my brain, before I went to sleep I was told this stent would be placed on the left side of my brain where my artery had no blood flow. I was not expecting to wake up in ICU, I was not expecting my neurosurgeon to inform me that I still have two blood clots and collapsed arteries. Please hold while I wrap my head around that.

 

Sinus and cerebral vein thrombosis is an uncommon type of clot. Only about 1,500 people in the U.S. are diagnosed with it per year.

Normally, blood is transported through arteries into the brain, where it delivers oxygen and nutrients. Once the blood has done its job, it collects into small veins (cerebral veins) that drain into large veins, called sinus veins. The sinus veins lead to the jugular veins in the neck, which carry the blood back to the heart (see image below). For clarification: These sinus veins have nothing in common (except for the name “sinus”) with the sinuses of the face on both sides of the nose and above the eyes which can get infected, leading to sinusitis. 
I have always advocated for things I have believed in, whether big or small. For some reason, I assumed doctors knew what they were talking about. I rarely questioned them. It wasn’t until this entire event that I started to question them, and myself as to what, who, why and how. I was immediately referred to a Vascular Neurosurgeon, instead of a Neurologist, I never asked why. I went from point A to C. It wasn’t until I started getting overly frustrated with the constant back and forth with no resolutions and numerous medications that I started to question everything and everyone. I have learned that I need to advocate for my health, my well being and the lives around me. I needed to arm myself with ammo aka questions to educate myself. When you own primary care physician and your neurosurgeon have no answers for you, who will?
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I understand

It’s safe to say that I have said this a thousand times throughout my lifetime. It’s a safe statement, to give comfort and a certain amount of compassion when you know or feel there is nothing you can do BUT say you understand. But do you?

I have learned through this entire process of being sick, the reality of that statement. In all honesty, I really don’t understand the full spectrum of anyone’s struggles. Unless I myself have experienced the same exact thing, the same emotions, the same process, the same mental and possible physical aspects of the situation, wearing their shoes kinda thing, I really don’t understand. I may want to, but I don’t and I won’t pretend to. But I will ask questions to try and understand, to try and put myself in their situation and imagine what it must be like. With that comes compassion and an offer of if you need me I am here that is genuine and sincere.

Being an outsider to someone who has an illness, which I can attest to being an outsider, the perspective is entirely different from the “other side”. You can only imagine what it must be like and go from there, offer empathy, sympathy and anything else you can do because all you can really do is imagine. But to truly understand it, you have to live it yourself. I have friends with illnesses that range in severity, I’m pretty certain, in all of them, I do not understand what it’s like for them on a day to day basis, with their challenges, what they face, their families face, and their children if they have them. I can however at this point over the last several months say I do understand certain aspects of what it’s like being sick with blood clots sitting in my brain and it being a major life upset.

I must have said a few times now to one person in particular, how in the hell do you do it? or has this ever happened to you? have you ever taken this medication before? There is now a bridge or a path at least to understanding what they go through. I can now understand what it’s like to take 22 medications, what meds makes things worse, make you spacey, make you sick, make you sleep or doesn’t do anything at all. I can now understand what it’s like to just want to shut the world out. I can now understand the sleepless nights, the exhaustion, the frustration, the nausea, the fevers, the constant trips to the doctors, the MRI’s, the stares, the questions, the misunderstandings, the tears, the pain, mood swings, wanting to be social but wanting to stay in bed, fevers, a faulty immune system, the ups, the downs, the day to day of having an illness. That shirt, you know the one that says, “Namaste in Bed”, yeah that about sums up how I feel.

There have been days where getting out of bed may have been my greatest accomplishment for the day. There were days I could barely walk feeling as though the bones in my feet were crushing with each step and the shooting pains in my legs were unbearable. There were days where taking a shower took all of my energy and I went back to bed. There were days I couldn’t eat and days that is all I wanted to do. There were days my head would hurt so bad I would cry myself to sleep so no one could see me, even though I had smiled the entire day, had conversation and “appeared” to be fine. There were days breathing has taken too much effort. My hair is falling out, I’ve gained weight and lost weight, there were bloody noses for weeks, periods so bad I couldn’t move, cough or laugh. There are just days, upon days at this point.

There have been muscle spasms, allergic reactions, bruises that won’t heal, days I couldn’t see out of my right eye, rashes, night sweats, internal bleeding, massive stomach pains, the inability to think clearly, if at all. There were days my speech was not in my favor, there were days I had to think hard about completing a full sentence or remembering things. There were days where it felt like the sun was going to burn my corneas out but I desperately wanted to see the sky, the birds and feel the air on my face. I had requested to go home after a night in ICU that very well could of ended my life. I wanted my own bed, the only place I felt safe, no blood pressure machines, no needles in my arms, no IV’s, no strangers. I needed to not be in this state anymore.

Having a “brain injury” as it’s labeled, can lead to strange occurrences, that you yourself don’t understand let alone anyone around you. My doctors don’t fully get it. This situation has changed me and this is something I have been struggling with to understand and figure out who this “new” person is. I can only handle small groups of people and some days only one person. Too much chaos causes me to get overwhelmed. Some days it takes me a bit longer to process things around me, I’ve forgotten things, places, conversations and the things I’ve done on a regular basis now seem foreign, like driving or going to the grocery store. Conversing takes a lot of energy at times, if the conversation is all over the place and too fast paced I can’t focus and feel impatient. My patience level is less and my tolerance to certain situations has run dry. It’s hard to understand for anyone on the outside, I get it and that’s ok. I am thankful at this point in time for texting, social media and mailboxes, for that simple reason alone, it’s all I can handle some days! I think it’s hard for some to understand that I don’t need anything, I only want to feel normal again. But I understand the normalcy in that statement.

Most days I push myself, cry it out if need be, then put my big girl pants on and do what I need to, even if it hurts, even if it meant paying for it the next day, even if it means smiling and Thankful you can’t visibly see what feels like a sharp knife in my skull. I’ve settled in to realize that always putting on that smiling face everyday, you know the one that smiles and gives the perception you got life by the balls? Well that smile on that face is the illusion of strength on those days that is all you have to give. I have learned what that smile means and doesn’t mean to those on the other side of life and myself, especially if you post it on social media. But if that smile is all I have to give that day, it’s your choice to take or leave it.

I understand that smile, it’s the smile I grew up with and was familiar with, that gave me comfort, even when I knew things were bad. It also made me realize that it’s ok to not have life by the balls, it’s ok to be a hot mess, it’s ok if people don’t understand you – you have no control over someone else’s thoughts, actions or perceptions, it’s ok to not be in control of every single thing…every damn day. It’s ok to let it all go and find peace and comfort in what you find peace and comfort in, whatever that may be on any given day. It’s ok to know through tragedy that your circle will change, you will grow closer to some and grow apart from others, unintentionally in some degree, but mostly by  life’s circumstances.

Most days for me right now, I am finding comfort in “home”, focusing on my health and appreciating those little things that mean so much, like the chance to breath one more day.

Maybe now I can say, I really do understand.