Fear is the Mind Killer

Fear
One of the hardest parts of having a chronic illness is figuring out when to say something and when to let it play out. Weird symptoms are kind of like the sun in the sky; they might be dulled by clouds, but you can always expect them. Sometimes stomach pain is just that, other times it ends up being a surgical issue. These symptoms can be the lightning before the storm or a wave in an ocean of them.
My recent flair has been a little all-consuming. My PA said that if things didn’t start to get better, we were going to run the full gamut: CT Scans, colonoscopy, blood work, you name it. I think she meant it to be reassuring, a “we will heal you” statement. However, feeling like nothing is healing has sort of made it a warning of the horror to come.
The fissure is still there and still painful, but I have sort of backed off of that issue for now. After much internal debate and a long conversation with Jon, I sent a message to my Digestive Health team. I explained that I recently completed a Prednisone taper, that I have been having daily headaches, stomach pain, sleeping more than normal and still waking up exhausted, that deep bone weary exhaustion. I also mentioned my moodiness.
The LPN checking the messages referred me to my PA, who recommended I get my cortisol levels checked. You know, it is never the answer you think it will be! My PA had to get approval from my head nurse, some other acronym MN-ARNP (Masters in Nursing, Advanced Registered Nurse Practitioner, I will admit…I had to look this one up!) who finally solidified the need to get a blood test done. In her words, urgently.
I am still awaiting results, but I can tell you…I wish that I had handled things a little differently. Usually news like this openly freaks me out. This time, without really seeing it, I turned to anger to mask the fear. Anger at the doctors for thinking that I can just drop everything to get a blood test on a whim. Angry at the looming co-pay. Angry that I was facing a new problem after killing myself to resolve the last few. Angry that the world kept going. Just, angry.
I often feel like I am alone in a giant field full of people who have vowed to practice Monastic Silence. Nothing I do, say, feel, fear, touch, or smell, can sway them from their belief. I am just there, screaming into an ocean of silent faces, wishing someone, anyone would hear me. See me. Help me.

Father’s Day

As Father’s Day approaches, so does the cracking of my artfully crafted exterior. I think about my dad often but I try to hide the pain I still feel. I know my sadness and unease makes people uncomfortable so I internalize it.
Only a few times a year do I let myself grieve or allow my pseudo tough-girl exterior to dissolve and just feel. My dad was a lot of things to a lot of people, and although it has not always been so, I know I can have my own opinion about him. It has taken me years to realize that despite what other people feel, my memories are mine and mine alone to keep.
He will always be the man who held me when I cried after I got into a huge fight with my first boyfriend. The man who, when I felt like my world was falling apart, told me to “never let them take my smile.” A man who, after losing a bet, got his hair braided and walked around downtown Waikiki with me.
Hawaii hair
For better or worse, he was my dad.
He taught me a lot. He showed me that some of the hardest lessons we learn in life are ones that come from the people we are supposed to love and trust. His actions both directly and indirectly have shown me the type of person I do and don’t want to be. Even in death, he taught me to love people like they could disappear tomorrow.
Nothing I say or do will physically bring you back dad, I know this…but I still search crowds for you. I play the songs you loved and pretend we are in the car together. On days I miss you most, I toast plain strawberry pop-tarts and slather them in butter, even though I hate them. For those few seconds, I am a kid again; I can close my eyes and have breakfast with you. I see your face when the boys smile, and I sometimes hear you when I talk. I think about what I would say if I could call you. I wonder if you would be proud of me.
Happy Father’s Day, Dad. I wish I could be with you today.

Real Life- Unpolished

warning
WARNING: gross mental visuals ahead!
As I have said before and will probably say again, the symptoms of Crohn’s are so commonplace to me that I’ve forgotten what life was like before Crohn’s. I have good days and bad, but always feel an effect.
For the last month I have been on a slow Prednisone (steroid) taper. I started at 40mg, then 30, then 20, and so on. Well, to err is human, right? I forgot a dose. Usually it would be no big deal–take it as soon as you remember. However with my brain fog and back-to-work stress I couldn’t remember. Did I take it with breakfast? Did I eat breakfast? Did I take it with my coffee? Did I have coffee? I don’t want to double dose…better safe than sorry, right?
Next thing I know, it’s two days without the medicine and my body has started the withdrawal cycle. I was faced with a choice: go cold turkey or reintroduce the pill, only to continue tapering.
I picked cold turkey.
Now before anyone sighs, lectures, eye rolls, or whatever else one might normally do when someone makes a bad decision, realize this: at a 20mg dose, the tapering slows to decrease by 5mg at a time. When I went cold turkey it was time to taper from 10mg to 5mg. I made the choice I thought would be the best for myself and my body….but man, the itching, the hot flashes, the mood swings, headaches, etc.? I felt like a dang meth head.
As if that was not enough, I had an incident yesterday that I would normally internalize, ignore, and basically chalk up as a product of my life. However it occurred to me, this disease is so glossed over and prettied up that true awareness is hard to come by.
Since August I have had a fissure, open sore, or scorched wound thing (doctors have pretty much called it everything). Yesterday I was in the bath and the “injury” was hurting, so like any wound I tried scratching it. I instantly regretted it, but the pain went away so whatever, I went back to reading in the bath. Some time went by and I looked down–the entire bath tub was an orange-like red color. For a few seconds I stopped breathing. I had never had something like that happen and it took my brain a minute to jump into action.
Gross right?
Fortunately, or unfortunately (I have not yet decided which) for me, the “injury” is a superficial and common symptom of IBD. Because I lack the ability (for the most part) to form solid waste, I mostly expel a bile-like substance. Bile is acidic. Until I can manage the amount of bathroom visits and bile, the wound cannot properly heal.
As gross as this topic is and as difficult as it is for me to talk about, this is my reality. My life unpolished. So thank you to those who add color to a sometimes dark world and who are unafraid to be themselves. Thank you to the girl in the black Scion dancing like no one was watching. Thank you to the man butchering singing Savage Garden at the top of his lungs like a band member and not an off-key and possibly tone-deaf man. You give me pause in a loud world; you offer me an opportunity to not take life so seriously.

Anxiety

Anxiety

Have you ever had a feeling or emotion you couldn’t explain? One that sounds illogical or insane even in your own head? You try to rationalize your fears and make sense of them; you tell yourself it’s because you want to understand, but really you just want other people to.
This for me has always been true of anxiety. I constantly feel swathed in uncertainty and panic. Sometimes my heart rate increases or my stomach churns and howls with a language comprised of anticipation and angst. I feel alone and gripped in an ice-block covered hand. The people around me are there but fragmented silhouettes of black and white. In my head I hear the chatter all around me but none of it comes in clear, like a facet slowly pouring into my soul. The ultimate disconnection.
I have yet to find the cure for my anxiety but I have learned ways to manage it. I hum to myself, make pro/con lists, twist the sleeve of my shirt, snap a rubber band, tap my foot, count to ten, or even breathe deeply. Sometimes these things help, other times I just have to remind myself that I have been through worse and that this too can be conquered.
Anxiety has kind of become a dirty word; a hushed term that gets swept under the rug or glazed over. Personally, I am not okay with that and you shouldn’t be either. I am writing this post because I know how easy it is to let your anxiety and fear consume you. To hide away and pretend that nothing is wrong. I know you feel burdened by your anxiousness and don’t want to put a strain on other people. Well, let me tell you; you are not a burden.
Whisper me your secrets and I will shout you my acceptance.

The beginning of Intrestinal Fortitude

writing
If I were to hear someone else telling my story, or animatedly reliving parts of my life, I would find it riveting. I would want to examine it under a microscope, view it from a far, and study it like a textbook. I am fascinated by one’s reality of going from zero-to-oh-shit (literally) in seconds; however, life is personal. It is raw, real, our connection to the world. Our experiences make up our foundation–our essence. I know the reality and intimacy of my chronic illness and rarely take the opportunity to step back and just soak in the absurdity–and oftentimes humor–in it all.
 
I met this co-worker a few years ago. I don’t know if she broke down my walls, climbed them, took a hammer to them, or slowly chipped them away, but befriending her has made all of the difference. You see, over a decade ago I used to write fan fiction. I loved reading and writing so I spent a good chunk of my spare time doing both activities. A book idea didn’t just come to me, it seeped into my soul and clung to me like a shadow. I HAD to write it down. So I did; well, I started to anyway.
My dad, who was living in a different country, wanted to read my work and that is something I rarely let anyone do. He said what all good parents should: that my work was good, great, whatever. I will never know if he truly felt that way or if he was just being supportive. He died shortly afterwards. Even though the book had nothing to do with him, I couldn’t write any more. I tried over the years but rereading my work just made me sad. In fact, I kind of stopped writing altogether. Until my friend.
 
I never stopped loving writing, I just think it stopped loving me. I thought it out grew me, or I it. I thought I needed to be a different person. Between the growing up, the losing a parent, and the living a life with an auto-immune disease, I became a wife and mother. My priorities shifted. I believed that I needed to be someone more; I needed to be someone worthy of their love. As I have grown and learned to love myself I realize these things are not mutually exclusive. Becoming a parent, having a disease, and being married doesn’t require me to become someone else, they just give me a different outlook on life.
With the encouragement and support of my friend and my husband, Intrestinal Fortitude was created. This is my way of taking back writing and taking back my life; and any luck, reaching someone who needs to hear the words I have to say. 

Live life outside the void

With every flair I learn a little bit more about myself. I learn about my strength, my pushing points, my fears, my weaknesses, and even my hopes and desires. This current flair has given me clarity regarding my future: I no longer want to live life in a void. I want color, meaning, fulfillment, and memories.
As some of you know from previous posts, I recently started taking Prednisone. Now, I have been on Prednisone a decent amount of times throughout my life, and each time I react in new or varying ways. There was depression, there was insatiable hunger, there was anger, and sometimes when I was really lucky–all three.
This time I decided to get ahead of it. So along with my 200-pill prescription, I picked up boxing gloves. I am not taking classes or learning in any professional capacity; it’s just me, my gloves, my brother, and his training mitts. I will tell you this: if you need an outlet, boxing is amazing. I am already loving it–the sweat, the release, the endorphins, the aches and pains, the power. For a person like me who has never felt powerful or in control, boxing is amazing.
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I said I want color, and I meant it; I have been wearing colored pants to work. It is completely outside my comfort zone. I have a “black/gray looks good with everything” outlook on life. (I consider it the Wednesday Addams’ approach.)
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If there is one thing I have learned, it is that you have to shake things up. Comfort is great, but living isn’t about a routine. Living is about the expensive, decadent dark chocolate espresso bar, it is about the right turn you’ve never taken, saying the words you never thought you could, and that someday trip that finally comes.
It is easy to say all this, to breathe in the fresh, after-rain air and wax poetic, but doing something about it is another story. So I offer a challenge to you: be daring, be bold, be UNCOMFORTABLE. Live life outside the void.