Flair/Post Flair

Yesterday I had every intention of writing all about my run-in with a stranger named Michael. But, as all of us auto-immune people know, one second life is good: you find yourself running around outside engaging in silly string fights with your boys, and the next second you are sweating profusely, stripped down to your underwear, hovering over the toilet.
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I started to get a headache, something that, unfortunately, is not uncommon. I decided to take a rest and drink some water. Then the headache progressed into full tension. Then the sweating happened. It was like I couldn’t regulate. I was hot, way too hot. I opened windows, I drank water, I stripped down to nearly nothing, and it wasn’t helping. Then the shaking started.
I was overcome with dizziness and nausea. The fear in the moment was plenty: Is it the cold the boys had? Is it because I missed my prednisone dose yesterday? Is it the inflammation in my colon? Is it the new meds? or is it the tapering I have been doing?
I found myself wondering what to do. If I go to the ER and it is nothing, I will have scared the boys, racked up a medical bill I don’t need, and wasted an already uncomfortable day in a more uncomfortable and scary environment. On the flipside, Crohn’s can progress rapidly and unfairly, can I really do nothing?!
I have a tendency to underplay how I feel in these moments; I never want to burden anyone else. Jon had worked all day and is recovering from whatever new ailment the boys brought home. Going to the ER or Urgent Care would require him to deal with me when I could tell he barely wanted to handle himself. So I just took a bath and prayed the pain away. Thankfully, after throwing up, cooling off, and a dinner of crackers and water, I was able to get some sleep.
The mornings after a flair have me reeling. I want to make memories and to try and erase the horrible day(s) before. So today, in true after-flair fashion, I dressed the boys and loaded them into the car for a day of fun and fat.
We started off at my favorite donut place, cruised the town with our new shades, picked up a pizza, and headed to the park. Jon took his lunch break and met us. It was a beautiful day in the Pacific Northwest, and the boys had a lot of energy to expel. I tend to take a lot of photos on these days. I never want to remember the days laid up in bed, I want to remember the boys laughing, feel the wind on my face, and remember the smell of a fresh brewed Americano.
PS, if you are wondering about Michael…there was a roll-over accident less than a mile from my house and traffic was being turned around and rerouted. (I commute an hour each way.) I had worked all day Friday and was anxious to get home, see the boys, and put my feet up. As the car in front of me was flipping around I smiled to the driver and asked if he knew if the next community over had a way around. He smiled back and then told me to meet him at the next community, he would let me use his gate code to get through.
I don’t know a better word for community; basically, the place next door is miles of sprawling woods with houses. I live in the middle of nowhere; I’m pretty sure the directions say to go until you think you are lost and then go another 10 miles. Anyway, it took me a minute to get to the next gate, between the chaos of people being turned around and the traffic from the other direction. There stood Michael, out of his car and by the gate ready to punch in his code.
As I got close he waved and I asked if he knew the way to the back gate. He told me to go through and wait for him, he would guide me. I didn’t realize how truly selfless this act was, until I started following him. Had I tried to navigate myself, I would still be lost… in an unknown area with no cell service.
Michael, I have never met you before but I appreciate you more than words. I am grateful to not have been stuck for the two-plus hours they quoted before the road was opened back up. Your small act of kindness was a HUGE blessing for me.
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Carpe Diem

Every day on my way to work I pass this sign: “Coffee 1 mile, turn right.” For two years now I have passed this sign since work is on the left. Well today I thought, Carpe Diem, why not! Life is about adventure, so I took the right.
I had no idea what this place is called or even what side of the busy intersection it is on, I just know it’s one mile away. So here I am, scanning this uncharted road at 6 a.m. bubbling with excitement and seize-the-dayness. I only hesitated slightly when I spotted this (for lack of a better term) ‘rustic’ coffee stand, one aptly named “Randeez.”
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A name like that had me questioning the attire of the barista inside. Whether today’s adventure would bring about skin-amax-at-night, or prove perhaps the owner just had an unfortunate sounding name for a coffee place, I didn’t know. (P.S., She was fully clothed…and in flannel, no less. P.P.S., The coffee was awful.) As I am driving away, I had this realization: Crohn’s or no Crohn’s, auto-immune disease or no disease, what is life without a little spontaneity?  
So flip the script. Turn the I-have-to-get-up-at-5-a.m. blues into I am finally going to take that right. Because, I will let you in on a secret, nobody makes it out alive. So eat that second donut, Facebook that photo you think you look absolutely horrible in, dive head first (if it’s safe!), make no apologies, and live every day with excitement and wonder.  
Trust me, the good days are rare but the good times can be all you need to appreciate the bad ones.

Awesome Blogger Award

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I am giddy with excitement and frankly a little shocked to learn that I have been nominated for The Awesome Blogger Award! This award was created by Maggie – Dreaming of Guatemala She created the award “For the absolutely wonderful writers all across the blogging world. They have beautiful blogs, are kind and lovely, and always find a way to add happiness and laughter to the lives of their readers. That is what truly defines an awesome blogger.”

  • The Rules:
  • Thank the person who nominated you.
  • Include the reason behind the award.
  • Include the banner in your post.
  • Tag it under #awesomebloggeraward in the Reader.
  • Answer the questions your nominator gave you.
  • Nominate at least 5 awesome bloggers.
  • Give your nominees 10 new questions to answer.
  • Let your nominees know they’ve been nominated!”

Diary of Self thank you for the kind words and high opinion. I am honored!

  1. What language would you like to learn? Spanish. I have tried several times and while I learn a few new words each time, nothing has ever stuck.
  2. When you were a kid, what did you want to be when you grew up? Oh man, everything! I wanted to be an actress, a writer, and a lawyer. Mostly though–and this is still true today–happy. I just wanted to be happy.
  3. What is something you now like that you didn’t like before? Carrot Cake. The idea of mixing vegetables and cake–not my style! Or wasn’t my style…I guess.
  4. What is currently your favorite song? I love music, all music…but lately I have been obsessed with, “Hold Back the River” – James Bay
  5. If you wrote a script for a movie, what would it be about? A feel-good, coming-of-age story about a girl with an auto-immune disease.
  6. Would you ever want any piercings? I want a nose piercing. Ironically enough though, needles terrify me. I have my ears pierced and for one beautiful summer I had my belly button pierced. The piercing rejected, which is just as well, since I have a scar from above my belly button all the way down.
  7. Did you ever have a crush on a cartoon character or anime character? My cool-girl persona would scoff and say no, but my brothers would laugh and tell you Roxas from Kingdom Hearts II. I was kind of (cough–still am–sorry, Jon) in love with the voice: aka Jesse McCartney.
  8. If you were given $100, what would you spend it on? I think it would depend on the circumstances surrounding the receiving. Bills, groceries, or maybe something special for the boys!
  9. What was the best birthday present you have ever received? For my 15th birthday I was given meet-and-greet passes to, you guessed it, Jesse McCartney. I totally met him. I have the Polaroid to prove it. Yes, Polaroid. (Message me if you want me to explain what that is!)
  10. What instrument do you want to learn to play? In my head I am this badass drummer chick. In all reality though, I attempted violin in my earlier years and I still cringe when I hear “Twinkle Twinkle Little Star.” Basically, I doubt my ability to master any musical instrument. 

I nominate-

Real Life of IBD Warriors

Polishing Dookie

Crohnsinthecity

My Life As A Case Study

BeautyBeyondBones

 

Question to my nominees:

If you could live anywhere in the world, where you live?

Who is your hero?

Is all really fair in love and war?

What is your favorite book?

Would you live in a different decade if you could?

Who is your favorite actor?

Do you believe in magic?

What is one terrifying thing you want to do?

Books or movies?

What would you tell younger you, if given the chance?

 

-Since 1949, May has been known as Mental Health Awareness month-

I have spent the last 16 years building a pretty high threshold for pain. I remember the night I got admitted to the hospital with an abscess, the doctor asked me to rate my pain. I must have said something low like 3 or maybe 4 because the doctor gave me this weird look of shock and disbelief. He said, “Most people in your situation would say 8.” It isn’t the pain that makes having a chronic illness so hard for me to bear, it is the emotional and mental exhaustion that comes with it.

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After I got diagnosed, this dark cumulus nimbus shadowed my every thought, my every move. I sometimes think of my life in two stages: before diagnosis and after. I wouldn’t say the diagnosis changed me, it just gave me a different view on the world. I guess it is true what they say, ignorance is bliss.
I have had some pretty dark days.
Admittedly though, I consider myself lucky. No matter how bad things got or how lost I felt, I never wanted to give up. I’m not exactly sure why that is. I just had this undeniable will to keep going, a yearning to be the girl I was before I got labeled a Chronie. Maybe it was fate or divine intervention, who knows.
Now, do not misunderstand me. Some nights when the pain is off-the-charts unbearable, when the tears burn hotter than the sting of the cold bathroom tiles biting into my skin, and the anger inside my inflamed intestines grows, I want to throw in the towel. I beg, I plead, I even bargain with the devil to make it stop. I am not completely immune, but I have never wanted to give up in a permanent sense.
It has taken me years of self-hatred and shame to fall in love with myself, something I am still working on and learning how to do. Finding people, like the ones I have met through Team Challenge, has been instrumental in my healing process. I know, despite only having completed a season and a half with them, that I am a better person because of them. They have opened up a space inside of my soul that I thought was sealed. More than just love and support, they showed me how to be myself and share who I am without shame or guilt. (The samething I hope to do with my blog.)
All the darkness you hide in is the light someone is searching for.
So maybe you’re not ready to open up about your struggles. Maybe, like me, you need someone to help you, to show you how worthwhile and valuable you are. If that is the case, hear me now: You matter. Who you are matters. What you feel and think, it means something. You are beautiful. You are loved. You can be anything you want to be.
If, like me, you want to change the world, start by changing your world. Be a friend, lend a listening ear, engage the quiet person, compliment a stranger, flip over tails-up pennies, laugh often, live a life worth remembering. Live.

 

Socially Awkward

Socially awkward to my core, I spent years clinging to the notion of that which makes me different and weird separated me somehow. I thought I was a martyr of some long, drawn out and noble cause, like I was somehow meant to rise above. As I get older though, I am starting to realize I am not a chosen one or a mid-century victor, this is just life and in life there is a little bit of “doesn’t belong” in all of us. It’s what makes us unique and beautiful.  
I was doomed from the start; in addition to the intrinsic isolation stemming from years of emotional turmoil from an undiagnosed chronic illness, I was also home-schooled in high school. I could blame this decision on a lot of things: parents who wanted to bubble wrap me from the world, an under-funded school district, or maybe even the illness itself. But I won’t place blame. That isn’t really my forte.
I am choosing instead to offer some reflection on a life filled with loneliness, emptiness, and introspection through my blog, in the hope that someone can take away something or maybe connect with me on that level.
I read a lot, I am never pop culturally relevant, and nine out of ten times I don’t pick up on proper social ques. I have had to develop a thick skin and learn to laugh at myself. I am an over-anxious thinker and worrier. I spent so much time stressing and wondering “What if?” that I often miss out on the best the world has to offer.
I rarely see outside the black and white. I feel uncomfortable in my own skin. I cling to my loner status as a form of protection. I hate caring so much about what people think. I never feel good enough. I want to be accepted. I want to fit in. I want to belong. I feel alone in a crowd. Guilt consumes me. I live in a world of fiction and fantasy. I believe in the magic of a good story.
The thing about fairytales that has always attracted me to them is not the happily-ever-after; it is knowing that the dragon can be slayed, that evil can be destroyed, that the days I fight my hardest are not done so in vain.
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World IBD Day

I started having IBD symptoms when I was 11. I spent my formidable years in and out of pain. Suffering symptoms that made no sense, I thought I was insane. I thought I was making myself sick. Doctors could never find anything wrong with me and tests never showed anything conclusive.
I got diagnosed in 2007, at the age of 17. I would like to say life got easier, that learning that something was wrong with me–which wasn’t mental–helped. It didn’t.
With a diagnosis came pills–lots of them. With the pills came depression and more doctors. With the doctors came financial obligations that packed a host of other problems. So it goes.
If you have ever researched Crohn’s or Ulcerative Colitis, you’ll read about the typical symptoms: diarrhea, fatigue, abdominal pain, cramping, fevers, and nausea. However, in honor of World IBD day tomorrow, (May 19th) I wanted to offer more than just that cursory sentence, so I have included a few pictures from my life. This in no way explains this disease, but maybe you’ll get a better look at how it can effect someone.
80 pounds 
This picture represents the unhealthiest point in my life. I was 80 pounds and barely holding it together. I lived off of crackers and Gatorade. I could never keep food down, had lower abdominal pain constantly, and was hospitalized with an abscess. I ended up staying seven days and required a feeding tube.

Not too long after that hospitalization I required surgery. I ended up having a temporary Ostomy and partial colon resection. Months later I went through a second and consequent third surgery for the re-anastomosis (attachment) surgery.

Scars
Barium
Flairs happen, and when they do you get scanned. Scoped. Poked. Prodded. Tested. Needled. Pumped full of chemicals and injected with dye. Barium– hope you never have to taste this. If you do, I am sorry. Truly. Call me on that day and I will sit with you. Honest.
IV TreatmetnNow for me, this next picture represents so much more than just treatment. I am currently on Remicade, a low-dose chemotherapy drug. I have been on it since June of 2014.
Pregnancy can do one of two things: bring about remission or pull you from it. When I got pregnant with Joseph, I was pulled from remission. I was faced with a choice: Joe or treatment. You don’t need me to explain to you what those days were like; I think you can figure it out.
I get these infusions every eight weeks and will continue to do so for the rest of my life, or until I build up an immunity. There isn’t much in the way of what comes next if the drug stops working, so I remain hopeful that they continue to work. Yes, that does mean I will be on low-dose chemo for life. That means needles, blood tests, TB tests, cancer screenings, fecal screenings, and constant health surveys and appointments. For life.

The things not pictured: sleepless nights, ER visits, hospital gowns, bowel obstructions at 30+ weeks pregnant, pharmacy wait times, falling asleep on the bathroom floor, waking up in cold water after finding 30 glorious minutes of sleep in the bathtub, aching joints, blood, the Fitbit step count after a day of using the bathroom, the tears, the inflamed insides, the stress, the anxiety, the anger, the isolation, the feeling of turning your best friend into a care giver.
Also not pictured, my strength. My determination to beat this disease. My hope that a future with a cure exists.

An open letter to my son for his fourth birthday

Little man,
For months I convinced myself I was pregnant. The doctors explained the unlikelihood of my ever having kids, but every month…I was so sure. Every negative test felt like a personal attack, like I was being punished for wanting a kid knowing my condition can be genetic.
Then it happened. I cannot explain why it was different, I just knew. Your dad had that look in his eye, the one he gets when he knows how badly the fallout will be when I get hurt. Your daddy though, he’s a patient and supportive man. He just smiled along as I talked about you; about the possibility of our life with you. Hearing your heartbeat, it truly was the most beautiful sound I had ever heard.
I won’t lie to you, pregnancy was as terrifying as it was magical. I was determined to finish school and make a good life for you which kept me busy. The doctors’ appointments stacked up, the usual and the specialists. Then I developed SUA (Single Umbilical Artery) and that required extra fetal monitoring. Between trying to contribute financially and still figure out who I was, I cried a lot. I spent a lot of time wondering if I was a terrible person for wanting you so badly, when you could end up like me.
I want you to know, that if that day should ever come, there is no one that will fight harder for you, with you, than me. I am now and forever your biggest cheerleader.
You turn four tomorrow buddy, and I couldn’t be any prouder of you. You are smart, so smart and that makes it harder for mommy to hide things from you. I want you to know how loved and valued you are. Sometimes mommy hurts, sometimes mommy cries, sometimes mommy gets mad and anxious about things that have nothing to do with you, and I am sorry for that. Sometimes mommy will have to sit things out, or be away from you for a few nights. In these moments I want you to remember that you are the breath in my lungs and the blood in my veins. You are the reason I fight so hard. The reason I have survived.
Falling in love with your dad was like finding water in the desert, but falling in love with you was like finding myself. Finding where I fit, where I belong. Thank you for being my son. For being a loving and caring big brother, and for making your daddy and I so proud.
Happy Birthday, son.
Jack & I hospital

Who I want to be today

Today is day seven on the higher Remicade dose and day six on pills. It’s been a wave pool of emotions. First few days started great, life felt different. Then as the pills started to take effect, I could feel the adversary in them. We have a saying in the sick world — “Sometimes the symptoms are worse than the disease.” Now, I won’t go so far as to say that, but it seems the new dose of medication is triggering some of my other dormant symptoms; namely my Fibromyalgia. The joint pain is excruciating. I feel brittle and weak. Everyone is trying their best to tiptoe on eggshells around me, but I hate it. Love it. Appreciate it. Hate it. I am trying to pick up the pieces that have been fractured the last few months, establish a routine, and be alive in the moment. The challenging part is trying not to let everyone down, which is crazy because I know the person pushing me so hard, is me. I wake up, look in the mirror and I have to pep talk myself.

I have to decide who I want to be today.

I woke up with the wind fluttering through my open window and the sound of rain falling on the branches in the trees. I knew today could be anything I wanted. I decided to take the boys grocery shopping (a task I have been putting off), preferring peanut butter and banana sandwiches to actual cooked lunches. It was a family affair, and though it had its moments, it was everything I needed. Going to the store is not a difficult task, but sometimes even the easiest of things can seem hard. Trying to navigate around the store with a giant cart for kids, maintaining the kids and their prying hands while also searching the aisles for items on my list, yeah…it is enough to stress out anyone. But especially so when out of nowhere the pain comes. One of those quick, unexpected, right-in-the-gut, hold-onto-anything-and-pray-you-don’t-double-over, or let-out-a-yelp pains. Thankfully for me, Jon was there. I grabbed his jacket and he just knew, he turned to me and let me grip his hand with all my might.

Not sure when it started happening, but somewhere in our years together I just knew to take his hand. Steady comfort, like I can divert the pain, or maybe it’s just knowing that someone is there. That I am not alone. So there I am, standing in front of the cream cheese, gripping Jon’s hand with the strength of a mom pushing a car off her child, fighting back tears while trying to suck in deep breaths. I avoid eye contact with people around me, turn my back from the kids and hope they see it as mom and dad just embracing in the store. The thing with these unexpected attacks? Sometimes they go on endlessly like a Celine Dion song, and other times they are quick like lightning. For me, they always happen in slow motion. I can feel my heart rate speed up, I can feel the sting of tears and the pain stabbing like a dagger, but I can also feel the warmth of Jon’s hand, the pressure of his returned grip, the love emanating from him as he intertwines our limbs in a hug.

The attack fades and we go on about our day. I don’t like talking about these moments. They make me feel weak and betrayed. Jon says the pain will never go away, but he will always be there to help take away as much of the hurt as he can.

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Today is a good day

I am staring at negative test results, the second set in the last four and a half months. C-Diff, negative. Colon Cancer, negative. I feel moisture pooling in my eyes as I choke on my heavy exhale. This is good news. Great news. So, what is this feeling? This inexplicable frustration? No, frustration is not the right word. I feel overwhelmed. Like I’m being thrown about in the eye of a storm. I can’t catch my breath and my feet can’t feel solid ground. Negative results should be all that she wrote but if these tests are negative…then why? Why do I feel this way, why do I hurt, why are my CRP’s double the standard range?
Today marks day five with the increased Remicade dose and day four on pills: four in the morning, three in the afternoon, and a gritty bile binder at night. Thankfully the pills are temporary. Sleep is still alluding me, and heartburn seems to have affixed itself to me, but I feel better than I have in months! I’m getting up with energy, freaking out less, hot flashes are almost minimal, stomach aches are zero, and the headaches…what headaches? Also, not to jinx the voodoo that you do, but I am down to five or less bathroom visits a day! That is half my daily trips!
I feel less pained, and more like an old groaning house. Like everything is settling; like my foundation is churning and moving with the weight of all that is happening! I cannot say I enjoy the new sensations, but I would take them any day over what it felt like before. Breathe deep I will. Jackson is attempting to feed me sour cream lemon pie, and I swear it tastes like a new life.
Rest up readers, today is a good day!

Pictures worth a thousand words

Usually when you wake up you can tell exactly what kind of day you’re going to have. I knew from the exhaustion I felt that today was going to be a rough one. Against every fiber of my being trying to cajole me into staying in bed, I got up; infusion day had arrived!
For those of you who do not know, I have been on medical leave since the 24th of April. My recent lab work showed a 17 CRP (C – reactive protein for inflammation) level. Standard range is 0-7. I have an inflamed colon. This mixed with some other unsavory symptoms had the doctors pushing for a higher drug dose. I typically get my IV infusions every 8 weeks, but due to the circumstances they wanted to pull me in at 4 weeks to get me correctly leveled. You know, after insurance got involved and approved this new course of action.
I have a love/hate relationship with infusion days. I know they will make me feel better, I know they will keep my major symptoms at bay, but needles freak me out. I am somewhat of a hard stick. By that I mean, during labor inducement it took two hours, an anesthesiologist, and an ultrasound machine to get me IV’d up. My first infusion took five attempts and a call to some pediatric god. Usually I can breathe through it, close my eyes and think of England, but the anticipation is almost always my undoing.
I had no idea what the day really had in store, but they say a picture is worth a thousand words, so here you go. A day in the life:

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Some days you’re the windshield, some days you’re the bug. Today, I was most certainly the bug. I have been complaining about some symptoms, the typical stuff: not sleeping, nausea, gutting pain on my lower left side, reoccurring sores, headaches, etc. I have been complaining and complaining since August. I finally started getting some traction in December when I got fed up with my nurse and went to my GI doc instead. Because of how erratic and different each person’s symptoms are, we have been playing the medicine roulette game. Until March, that is. I struggle every day. I hate being a pin cushion, I hate being everyone’s problem. I hate having no control. So again I went to the GI. That lead us here, to today. A new plan. New meds.
I will be going back on Prednisone, downing a handful of other pills, drinking a gritty bile binder, and using a cream to help heal the fissure. Nurse says if I am not feeling better between the new dose of Remicade and all of the above, by early next week, it’ll be colonoscopy time. From there, full image scanning. I should feel dejected, demoralized, and angry. To be truthful though, I feel invigorated. I mean yes, I feel the other stuff too, but I am a girl that likes a plan. Now I have a plan. Now I have the power to be the windshield.
Not every day will be sunny and not every day will have a rainbow after the rain, but these bad days…they have a role. They make the good days better. Laughter louder, hugs warmer, the world brighter. So maybe you’re the bug more often than not, to that I say, be the best damned bug you can be!