Relapse musings

I use to think it was the hardest thing in the world to put myself back together and then keep it that way…
Keeping it together was easy

it’s falling apart that’s complicated

All of your hard work has gone to waste
You can’t catch your breath and you cant stop spinning

you keep smiling but you can’t feel it anymore
You keep going through the motions like a well oiled machine but they don’t mean anything to you
You become lost and you don’t know how you got lost
You’re not sure where it started or what the trigger was
But suddenly you’re drowning
You’re alone even when your surrounded and you don’t have the emotional capacity to weather any small upheaval that may cross your path
You become a little more shriveled and a little more sad

so you curl up inside of yourself praying no one sees the puddle of mess and emotions you’ve become
You’ll feel like screaming just so somebody can hear you But synonymously hope nobody is listening
“I’m screaming from the inside out
But I’m hoping you don’t hear me shout”

I thought that I had finally done it

I beat the big D

(no pun intended)

my world was shiny and shimmery

I was starting to love who I was

I began to feel like I could figure it all out and then…

like an alcoholic on a binder….

I relapsed

So here we are…

Apologies, Rants, Raves, and Thanks

hello my lovelies…

I have been away for some time, work has been hectic and I’m back in the college groove again

I apologize for my neglect here for anyone waiting out there in the airwaves to hear from me (if anyone is)

Henry David Thoreau once said “Things do not change, we change.”

I’m a firm believer in being the change you want to see in the world, but I have a commitment problem.

You see I wanna be healthy, I want clean living, I want efficiency, I want world peace and all that crap. But I’m human.

I start a workout and I plan to eat healthy, two weeks later im vegged out on the couch watching a criminal minds marathon and I’m down a sleeve of oreos.

Get the picture?

So I’ve been begging and pleading for answers about my health, I’m on the verge of accepting any diagnosis a doctor is willing to toss my way, like a dog with a bone….

Now as a child I had a heart condition (don’t worry my ticker is tip top these days) and I see a cardiologist yearly.

When I explained to him all the issues I had been having he immediately said,

“you need to cut out wheat. If they think you have fibromyalgia that is essentially inflammation and wheat causes inflammation. “

AHHH, yes!! That makes total sense, OK DOC!

he says: ” You really need to just do the primal/paleo thing”

Here I am salivating in wonder and this wizard of medicine, OK YESSIR, DIET STARTS NOW!!

Fast forward to next week where I am following up with my GP, three hours later I left with a sleeping pill script, and some blood leeching tests for more answers.

Test results are in and I DON’T HAVE LYME!! (thank you sweet baby jesus)

BUT….I have some low vitamin D….

Because I am now obsessed with my health I of course google the causes for a low Vitamin D level.

Which led me to TA DA celieac disease.

I had been having some “tummy troubles” as of late amongst my usual fatigue, pain, etc. and everything lined up, EVERY SINGLE SYMPTOM

So no doctor has confirmed it but I HAVE

I started eating better I cut out wheat (mostly) because its hard to go full boar when you live in a small town with limited gluten/wheat free resources and you already have a house full of food

But I noticed on the days I eat no wheat/gluten at all….I FEEL LIKE SUPAWOMANNNN!

So I’m happy, but fuck I’m also mad…

One year in my life down and out because nobody thought MAYBE ITS HER DIET?!!

I mean you’ve got to be kidding me

Celiac disease and gluten intolerance are becoming as common household term as Madonna in the 80’s

I guess I shouldn’t hold a grudge eh…I am feeling much better, and once it’s all out of my system I should feel like ME again 🙂

I can’t begin to explain the immense amount of happiness I have from knowing I may not live the rest of my life in pain for no intelligable reason

 

 

Side Note: For all of you following me I think your fabulous and I am so glad you have found something here you enjoy. One of the biggest struggles of my life has always been loneliness, even in a crowded room. But I like the saying that goes “If we’re all alone, then we’re all together in that too.” It helps me feel not alone, and so do all of you.

 

Peace, Love, and Gluten FREE babyy

xo

 

Today is your day…

Recently I saw my GP yet again to discuss my symptoms any changes etc. and be sent for more testing. Only to have symptoms ignored, and a doctor telling me she didn’t know what to do for me. However I was left with some good advice to quit obsessing my symptoms which could in turn lead to my creation of phantom symptoms because I am so hyper aware of my body now.

Fair enough. I could have been angry I still didn’t have answers and feel bad for myself, sure. But you know today is my day. I refuse to spend it wallowing. So I took their advice and I restricted myself from google and web md and started focusing on the world around me a little more.

Guess What?! I feel alot better!!

Granted my body still hurts and fatigue is still an issue and sometimes my joints feel like their on fire. Regardless of all that mentally and physically I somehow feel improved just by letting go of some of the extra weight I was carrying around. It probably helps that I now have a new sleeping pill which (thank sweet baby jesus) keeps me from having such crazy lucid dreams and helps me get to a deeper more refreshing sleep. Which can do alot for the bod.

So take this day and know it is yours, you can do anything you want with it, but why not do something good, something beautiful, something fun. Even if it’s only for a moment I promise you’ll feel better no matter what you’re going through whether it be chronic illness, cancer, depression, anxiety,etc. I promise it will change you.

I was headed down a bad road towards self pity and sadness when these doctors said the most encouraging thing that anyones said to me yet:

“just keep fighting, dont stop fighting.”

It may seem small to you but I needed that. I needed someone to tell me to stob obsessing but to keep fighting. I needed to feel like someone heard me. Sometimes that’s all you need.

Remember to listen to your loved ones, sometimes they need you the most and they can’t even tell you, or maybe they don’t even know. But they need you to hear them.

 

 

so for today peace, love, & Strength to fight another day

 

xo

Kaycee

Overwhelming and Unexplainable..

“Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.”
― S. Kelley Harrell

Maybe you will read the quote above and not understand it, that’s ok. I hope you don’t. For me I read it and I knew it’s truth, it completely hit home. Today I am doing something I normally try not to do. The only thing worse than being chronically ill, is being chronically depressed too. I wake up every morning with the knowledge that I am the master of my own fate. Whether I have a good day or a bad day that is up to me, for the most part. I feel like there’s a little wiggle room in that statement. However your fate is largely up to you, that is entirely true.

Most days I wake up the same way feeling terrible, some days are better or worse than others. But I remember that I have two boys that share my sadness, as well as my happiness. Two boys who have more fun when mommy is positive, upbeat, and active. I must actively decide in the morning each morning what kind of day I will have. I think the problem is this morning in the rush of my late wake up due to my horror inducing lucid dreams I didn’t decide.

My mood is slipping into the blue. Da ba dee da ba die…. (if you don’t get that reference your not a 90’s baby and that is OK)

Anyways the other part to this puzzle is today I’ve been reading a book that is coincidentally required for a health communications class I’m taking in college called “Brain on Fire” its by Susannah Cahalan who is the heroine of this story and I am currently 121 pages deep. This book has sent me through all of her emotions thus far and unfortunately I can relate to some of them. It’s putting my mind in a bit of a funk. For all you spoonies, although it seems hers isn’t a chronic illness (as far as I can tell at this point) it’s definitely a mysterious one, which I can relate to since I am still currently without diagnosis as I know some others are.

Anyways for all of you battling your bodies as well as your minds today, I pray tomorrow is a better day.

Peace, Love, & Books

Chronically Ill…

It is said that:

“The strongest people are not those who show strength in front of us but those who win battles we know nothing about.”

I can personally attest to the truth of this statement. I have faced many trials in my short time on this earth. I gave life to two beautiful baby boys at the age of seventeen. I raised those boys mostly on my own for the better part of three years. I went to basic training and faced the tyranny of battle hardened drill sargeants, and tests of my physical capabilities. I have faced numerous final exam weeks and all nighters after a long day at work. I have faced heartaches and heartbreaks. I have lost loved ones, friendships, and my faith. All of these things they were manageable. You push through with a smile and a nod. Repeating to the masses that commend me for my strength that I am no one special. You make your choices and your dealt the cards your dealt. No matter how much you might want to you cant change those things you just make the best out of what your given. These things are all true, I am not “supermom”, I am not a goddess, or anything special really. I can think of countless people who have faced worse than me.

But nothing has compared to the strength I had to find in myself, that I have to find in myself daily just to make it through now that I am one of the “Chronically Ill.” Doctor’s don’t know where to place me, there is no certain category that fits. I have taken blood test after blood test. I’ve been evalutated for anxiety and depression ( which by the way who the hell isn’t sad or stressed now and then).  So for now they said:

” It looks like fibromyalgia. You’re kind of young to be given that diagnosis and if we label you with fibromyalgia you’ll never be able to dencounce the diagnosis. So for now we are just saying Chronic fatigue, and widespread pain.”

Which is ok really, I feel like fibromyalgia is a diagnosis they slap on when they dont have a better answer. So they gave me cymbalta which is a depression treatment but also frequently used to treat fibromyalgia patients. I am two and a half months into the medicine and I still wake up every day feeling like I’ve been hit by a mack truck. I still have to fight to wake up and clear the fog from my brain so I can get up and make it to the shower every morning. I still have to deal with the fact that most of the time I either hurt too bad or I am too exhausted to go play at the park with my boys. I have to deal with being the parent that’s not much fun at all. I have to regularly explain to two five year olds that mommy is having a bad day and I need them to take it easy on me. I still have days where I can’t make it out of bed or my whole body feels like an acid factory or the headache never goes away, not even a little. It’s the hardest thing I’ve ever done being Chronically Ill.

A few weeks ago it was my weekend with the boys and I was having a rough couple of days and my mom had came by the house to see us. We were just taking it easy around the house watching a movie while the boys flitted in and out of their playroom. Then the boys asked the question I dread regularly. “Mom can we go outside, can we go to the park…” I know, how awful am I, I don’t even want to go to the park. I looked at my mom and she said well we could just go for a bit. I frowned as I told her, you think it’s just that easy like I didnt just spend most of my day in bed because it hurt too much to get out of it. Eventually though I managed to shuffle into the shower and polish myself into a decent looking human being, albeit a tired one. So we went to the park. After about a good ten to fifteen minutes I was already feeling it, exhaustion from the short trip to the park and following my boys around. I sat down for about ten minutes longer before we called it and went home. Later I started crying as I text my mom and I praised her for giving me the look that said “get up and go to the damn park”. I knew she didn’t understand how I felt and I was frustrated but I was also thankful for the push. Sometimes I use so much energy all week just to get through my day to day, it’s hard to find the motivation to push through my illness when the weekend comes and there’s nothing to be done. I told her I needed the motivation but sometimes I also just need a hand around the house and some understanding. It must have finally clicked for my mom and I am thankful to say now it feels more like she’s fighting along with me and begging for answers as I am. Worse then my sickness, is feeling alone in my sickness. Now I know I’m not alone.

Next week I will go in to get another blood test for the last possible answer I could think of and literally pray to god that I have chronic lyme disease so that maybe I could have some hope of treatment and one day this will all just be a bad dream. This year when we took vacation we only took a weekend vacation two and a half hours away to the zoo and by the end of the day I was in so much pain I couldn’t sleep and I couldn’t play or be silly or fun. I had to ask my mother to rub me down with Icy Hot just to get some relief. This is not the way I want to live my life. I have to gauge everything I do by how I’m feeling moment to moment. I have to monitor my body and every pain, every symptom and wait for the flare that will hurt worse then my every day pains. I spend nights on edge either from insomnia or from lucid dreams thanks to the medication. Sometimes I can sleep eight hours and it literally feels like eight minutes. I try not to make a fuss, I keep quiet most of the time. The majority of my friends likely have no idea there is anything wrong with me. There is a small inner circle I trust with my pain and that I beg for understanding from. When your sick and no one can see it, it’s hard for them to sympathize with you. People tend to think that your making it up or that your exxagerating. Which is terribly frustrating just like everything else when your chronically ill. You want your body to work the way it used to, you want your brain to remember something for longer than five minutes, and you want your loved once to support you and understand you, but it’s really not that simple. Normally I am quite the social butterfly. Now that I am sick I keep to myself alot more I spend kid free weekends napping and binge watching tv just to let my body catch up. Sometimes I can’t even find the energy to pick up the phone, because even that can hurt, or my mind just can’t process anymore than it already is, or my agitation has grown to a big hairy monster because I feel like my body is rejecting itself and I just can’t face anyone for the moment without ripping their heads off.

Chronic Illness is the biggest hurdle I’ve ever came across. The people I share this journey with are some of the strongest and most encouraging and uplifting people I have ever met. I am no longer ashamed, for I am proud to call myself a spoonie and count myself amongst the hundreds that have to be strong every second of every day. I always said god had more faith in me than I had in myself, I suppose this is just another test. In the meantime I’m catching rest where I can, taking advantage of nap time, accomplishing everything under the sun on my good days, and praying for healing on my bad ones.

I’ll leave you with this

“Refuse to sink”

 

peace, love, & Healing

In other news…

In other news today my sweet not-so-little anymore twin boys started kindergarten today.

No tears were shed…

By them that is

It’s amazing how you create this little person after 9 months bumbling and tumbling around inside of you

then before you know it your teaching them to eat to walk to talk mind their manners and before you know it…

their out the door

It happens in the blink of an eye

They become these beautiful little versions of you and really it’s just breathtaking some days

other days its downright ugly because let’s face it nobody’s perfect

and five year olds tend to be rude

I would not trade a single second or one ounce of my insanity for another life

They are perfect

Today was perfect

I am so proud

Hard and Clear

Ernest Hemingway once said

“Write hard and clear about what hurts.”

So that’s what I’m doing, I’m tallying them up, taking notes, counting wounds, and harsh memories and I will regurgitate them here

Hard and clear…

Because once you get it all out, it can’t rip you apart from the inside anymore. You’r pain becomes this intangible object floating off onto the pages of a book, or the screen of a computer, being shared amongst the masses who try to understand and carry your same pain and struggle.

Currently I’m still reeling from a moment, a harsh realization, a tone in a message you can’t really hear but you see it.  But just a second before we get all the way there let me start at the beginning, or well its somewher in the middle, but you get the idea.

I met him when I was 17 years old, a wee babe but I knew it all, I had it all planned, I was wildly ambitious with my dreams and I knew where I was going.

He turned me upside down and inside out. I was head over heels in a matter of moments. I’m certain to this day there was something a little like electricity sparking in the moment I first laid eyes on him. It was as if my whole body was on edge and suddenly every nerve ending in my body was whirring and clicking quickly along with my rising pulse.

To really tell it I’d have to spill every single dark disgusting detail that led up to our demise, to really make you understand. For my sanity’s sake I cannot dredge up all those details, but understand theres so much more to our story.

Eight months. No more, no less. That’s all I got. Unless you count the mindnumbingly horrific two and a half years we allowed ourselves to hang on and torment each other. Desperately grasping at something that we could no longer reach. Similar to cleaning with toddlers in the house. It just couldn’t be done. The mess was made and we kept making it messier. We promised that we loved each other and forever would be together even apart. I know this sounds like some silly puppy love story but really it’s not. It’s really quite gritty, I still think everything that happened was so surreal. It was too big for us and we couldn’t see what we were doing while it was happening.

When we finally put down our torch and moved on. There were still moments. Moments when we forgot briefly that we had already walked away and promised to quit doing this to each other. A random text here and there just to say hello, how have you been? A drunken phone call. A facebook comment.

But last night as the photos came across facebook and I watched him with his new s/o I could not help but be angry, be jealous, be broken. Then I stopped myself I regrouped, and I sent him a text. Three little letters

“hey”

I heald my breath as I waited, wondering if I should have even bothered. But you have to understand he wasn’t only my ex he was one of my best friends he had been through one of the toughest times of my life with me when he didn’t owe it to me to be there at all. So I waited and I hoped for one more short conversation, just a hey how are ya before I picked up and moved on with my life and quit daydreaming about the what if’s. Because what if’s are just that, they were never meant to be anything more. Then as my phone vibrated my heart skipped a beat before pounding down my ears as I opened the text to see:

“Don’t text me”

Ouch. Everything we’d been through together and that’s the response I get. I’d have felt better if he hadn’t answered at all. My palms heated along with my temper. I felt myself begin to bull up and huff. Ibecame angry, at him, at his new s/o, at the world for making me feel alone. But you can’t blame the world, or him, or her. Just you, for your pain, so again I regrouped and I said very nonchalant…

“oops, that wasn’t even meant for you man take it easy.”

Nothing….

radio silence.

Maybe our chapter has finally closed and I missed the memo, but that felt just like a hard slap to the face.

For future reference I should remember to forget.

For future reference I should pick better men and make cleaner breaks.

 

peace, love, and clarity…

xo

 

 

Laughing amongst the stars

“You – you alone will have the stars as no one else has them…In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night…You – only you – will have stars that can laugh.”

Isn’t that just really powerful and beautiful? Robin William’s daughter posted this quote from The Little Prince on social media shortly after the news of his death plagued the airwaves. I have suffered more losses in this life than I care to discuss. It’s a nice thought to think if you just keep looking up their there in the stars and maybe even laughing. I nearly lost my father this year to AML. If you are not a cancer officianado as I have come to be, AML is short for acute myeloid lukemia.

http://www.cancer.gov/cancertopics/pdq/treatment/adultAML/Patient/page1 – theres a link to more info if incase you find yourself homogenous to the curious cat

I think her recent public grieving for her father struck a cord with me more than anything else had about his passing having almost been in the same shoes this year.

It was all very sudden one minute he’s fine and the next doctors are telling us without treatment he has six weeks to live. Now my dad is no spring chicken at 65 years old but certainly we wanted more than 6 weeks. God 6 weeks would feel like 6 seconds when it was all said and done and that’s just not fair. So we had a sort of “last meal” at the casino (dad’s pick) before they admitted him to the hospital for what was meant to only be a month long treatment. In one day we found out the earthshattering news and started our tumble down the rabbit hole that is cancer and it didn’t stop for 6 long agonizing months. Those six months felt like six years. Chemo caused an infection which then became toxic and it spiraled from there. Then as you can imagine  4 months bedridden led to 2 months of physical therapy and rehab so that my father could once again learn to use his body. At one point during his 4 month stay which was mostly spent in ICU he was put in a medically induced coma for about a week and put on a ventilator. We thought this is it, he may not make it. It was gut wrenching, terrifying, heartbreaking, the kind of thing that makes you so angry you feel like you just might spontaneously combust. I spent hours wondering what if… Counting all the moments my father would potentially miss with me and his grandchidren, with all of us. Everytime something went wrong I had the urge to call my father because he always seemed to have the answers but for the first time in my whole life I couldn’t ask my dad for help, and it broke me down in every possible way. The bond between a father and a daughter is a special one. I can’t quite describe it. The relief we felt when he went into remission was like nothing I’ve ever felt, for the first time in months the tears I cried were tears of joy. When he was taken off of dialysis ( his kidneys had begun to fail due to the chemo) I did another little happy dance and my heart soared. Now I savor every moment, every phone call, every last look from my father. I will never again take for granted my father or my family. Coming so close to the end gives me a glimpse of what the reality of such a loss would be. I don’t think thats a loss you ever recover from fully. Going through this experience with my father we joked about being cancer experts and practically becoming nurses with the motto this is the new normal it’s just life and we’ll get through it. I think if we had lost him we’d have never recovered but we would have eventually adjusted to “the new normal.” For all those suffering from the loss of a loved one I hope that they are laughing amongst the stars, and I pray you find your way to your “new normal” with courage, and hope.

Peace, Love, and Pizza 😉

xo