Tag: IC

The Cycle Continues

The Cycle Continues

“I’m dying of being a girl”, was my monthly catch phrase from the very first cycle I ever had at age 16. I remember being spoon fed Vicodin as a last ditch effort to at least sleep and missing school 3 days every month. My […]

Panic Spills Over The Brim

Panic Spills Over The Brim

The feeling is not satiating. I know I have tasks I must complete, but I’m drained of all ability to fully function. Dragging myself through my day is a must. I’m not positive what came first, the anxiety or the IC. Sheer panic engulfs me […]

Unavoidable Change

Unavoidable Change

Change is everything. It’s a permanent factor in our lives.

Each moment brings with it the prospect of change.

When I was first diagnosed with Interstitial Cystitis, my urologist informed me, “You have a disease you’ll now have for life but you’ll manage, you won’t die from this but it will require changes in your diet and lifestyle.” My anxiety grew, I had no idea what this meant, I’d just had this woman’s camera inside my bladder.

Change, I was not willing, I was not wanting it. I was not ready. I still needed answers but what I wanted was a label that came with a cure.

As the urologist demanded I look at my own insides when I was really trying to pretend I was on a sandy white beach with warm ocean waves lapping at my feet. “Look at what you’re body’s doing,” her voice sounded almost excited at the field of hives and lesions lining my bladder. I flashed my eyes open and almost choked on a scream. Get out of my body! I was grateful the shout was in my head. I remained silent, gaping at my wounded, suffering bladder as I shed a single tear and gripped the edge of my medical bed harder.

After the scope procedure I was devastated both physically and mentally. I had a chronic disease. I was in excruciating midsection pain. I was hastily rushed out the door so she could attend to whoever was next. She was rambling quickly, “you’ll hate me, I’m going to remove everything fun out of your diet,” then handed me a list which included: spicy food, alcohol, carbonation, caffeine, and chocolate. She proceeded to guide me out the door with, “just avoid these foods, start taking aloe vera from Desert Harvest with a regiment of low dose antibiotics and your symptoms will feel much better but this will be your new life.” This was it. All the advice and support I received in understanding my new disease.

I was not ready to change my diet, I didn’t understand why I couldn’t just eat food and be fine. I was resentful to everyone around me who wasn’t being told their body was not able to process overly processed foods without consequences.

At this point I had only two options I could see. First option is quit and allow myself to collapse, to become a victim or to give up. What would giving up really mean? The second option was to change and become my own advocate. I chose option two, I began to research my disease. I found other urologists and opinions. I remained firm in my, “I’ll pursue the natural healing means,” mindset. I believed, I listened, I did as I was told so I spent 6 months on low grade antibiotics and was told the intent was to stun the bacteria so it’d fall right out of my body. I never thought to ask, what about the good bacteria? At this point my education, my knowledge didn’t realize there was a host of health bacteria my gut needed to function. I listened to my doctor. I believed.

Had I not listened to my body, my gut, my intuition? Had I avoided truths I’d been speculating long like gluten allergies?

Yes. I knew my mother was recently diagnosed gluten sensitivity and it was negative effecting her ulcerative colitis. She’s removed anything processed, grains, and had to learn how to manage what her body was able to handle. I quickly saw myself having to travel down a similar path.

I was resolved in my belief I needed professional help to navigate a natural healing journey. Working with a urologist supportive of diet and lifestyle changes, my primary care physician as an anchor for understanding my continued health, a naturopath and nutritionist as the source of knowledge on natural healing and testing. Through the use of these specialists, I’ve been able to learn how to navigate the sensitivities my body’s reacting too. I’m working with a low oxalate low acid autoimmune paleo diet for healing at present and getting here was the hardest challenge and change I’ve faced to date. However I’ve made progress on my healing journey because of my eventual willingness to try something different. Removing Gluten, Soy, Dairy where huge steps for me and changed my urgency. I can actually sleep through the night after 2 years of working with these professionals.

Sometimes I still feel pains of jealousy over the changes in my life I view as unavoidable. I’ve had to replace nights out with nights in to heal with my new tools. I actively practice body rolling and Rossiter techniques to keep entire body pain to a minimum. I haven’t used IBUprofen or Tylenol in years. I have educated myself on the magic of essential oils and living a cleaner, more sustainable life.

I still cringe at the thought of another change, but with practice and time I’m reminding myself that any life change whether unavoidable or chosen, is another adventure in discovering the inner workings of this human body experience.

I no longer see change as something I must overcome but more like the universe planting a finger in my path and setting it straight. Had I not received this diagnosis and changed my diet I’d have never lost the extra 100 lbs of personal weight I gained through horrible lifestyle choices through college. Had desk life not caused excruciating pain in my wrists and tension headaches I’d have never found the Rossiter System and changed careers to pursue a path of helping others.

There’s two sides to every coin, two angles to each challenge. Change brings with it consequences that will affect a life? How will you view this change? With a positive twist and acceptance? Or anger and resentment? Each perspective has real consequences on your body, your mind and how you move forward. Accept change as a inevitability of life, embrace the uncomfortable feelings surround it and allow it to help you become your best self.

 

Apple Out,

K. Sullivan

Just Below The Surface Panic

Just Below The Surface Panic

It’s the reason I can feel my arm hairs raise with the goosebumps as they create a braille like story of my anxiousness, tattooed by my own subconscious across my skin. It’s the just below the surface panic I feel in silent moments, or loud […]

What is Interstitial Cystitis?

What is Interstitial Cystitis?

I’m going to ask you to imagine an experience. This experience should feel traumatic, scary and overwhelming. Delve into your imagination and envision burning, urgent discomfort. Agony bursts through to your brain’s pain center, telling you there’s knives slicing up your midsection. Your most intimate […]

Psychosomatic

Psychosomatic

Psychosomatic (A Poem)

Whenever I see my Physician for

Diagnostic maintenance I remind her,

Steadfast, I’m not interested in drugs.

I only want to feel differently, better

Than I presently do. Some nights I

Go to bed terrified, anxious I won’t

Rise for the next day. When I do

Wake, I cry for reasons I don’t

Fully recognize. Other than pain.

I know pain well. It’s unbearable,

Weird, awkwardly terrible. My

Pain’s embarrassing. I’m not

Embarrassed that I’m suffering

The wrath of Frank in my loans.

I’m embarrassed that other

People get uncomfortable

When I try to communicate

My agony. Frank’s this real

Monster living inside of me.

Frank the fire flaring IC man,

Starting fires and causing

Inflammation. I’m riddled with

Deceitful urgency dragging

Me out of sleep, meetings,

Social engagements. My

Intimate cavern expands then

Clenches in time with my heart

beat but a step ahead. I dare

Not breathe a deeper breath

As to not upset the balance.

Frank will not let me rest easy.

My Doctor seems uninterested in the

Journey I’m taking. Her phrasing

Leaves me hollow, plagued with inner

Doubt and inquisition. She’s said,

“Psychosomatic, psychologist, stress.

You’re anxiety’s getting the best of

You. You’ll do better with more rest.”

I have real visible symptoms. My suffering

Exists. Lesions line my bladder while

Hives my ribs. Psychosomatic. Like

I made the whole thing up? There’s

Nothing like being called crazy to make

You feel like you’re crazy.  I know my

Sufferings real. I physically see signs

Swelling irritation I feel the urgency,

Burning, stabbing pain all the time

I'm stressed, yes, but she won't tell me

What to do with the the anxiety or how

To manage she just gave me more -

In telling me my issues may be.

Psychosomatic.

Yes I experience negative self talk,

But that doesn’t make me crazy. I may

Spend hours arguing with myself over

Why I'm stupid only I don't know who

To believe because both arguments

seem valid. Does that make me

Psychosomatic?

Frank’s no longer just creating fires

In my loans, he’s  in my head. I believe

She believes I'm psychosomatic, my PCP

That is - how do you not have anxiety in

Today’s age where so much is asked of

Each individual. Everything I do makes

Me nervous. Everything I do makes me

Question everything I do. I can't breathe.

Ever. I never take a real breath. Air is never

Satisfying. I don’t always know what’s real.

Does my mind do this to my body or my

Body do this to my mind? I refuse to believe

This is all in my head. I’ll keep seeking answers

And fight the negative self talk telling me,

“I’m better off dead.”

A Day In Hell

A Day In Hell

A stream of intense emotions hits me at once ranging from complete self loathing, disgust with my body, fear of my continued suffering experience – to guilt, despair, and shame about how useless I believe myself to be. Some mornings I wake up with blinding […]

My Monster Has a Name

My Monster Has a Name

My palms are clammy. My thoughts race. Electricity crackles in my rib cage rendering my lunges immobile. A voice, I’ll call her Reason, she scorns me, “Suck it up buttercup, you’ve got a job to do.” Reason is telling me I must stay put and […]