Author: ksullivan

Kombucha (Part 2) – What is it?

Kombucha (Part 2) – What is it?

What is Kombucha? A fermented beverage containing beneficial bacteria in the form of yeast. According to SeedsOfHealth.com, “The first recorded use of kombucha comes from China in 221 BC during the Tsin Dynasty. It was known as “The Tea of Immortality”. It has been used […]

Kombucha (Part 1) – My Experience

Kombucha (Part 1) – My Experience

You see it in grocery stores and gas stations, you hear it floating around as a healthy. It’s a fermented food option to help restore good gut microbes; it’s Kombucha. My experience with making my own Kombucha: I’ve spent the past year immersed in listening […]

High Functioning Anxiety.

High Functioning Anxiety.

High Functioning, Anxiety.

The trouble with suffering through high functioning anxiety

Is believing that all your flustered feelings are your own fault

You’re less, being less productive than your expectations expect.

Further troubling is the inability to realize your own limits

As the belief that you should be limitless rests in your core

All the while nagging, reminding you of your shortcomings.

You believe you’re capable of greatness, of being extra in the

World of ordinary. What you forget is that you’re human

Riddled with flaws and imperfections that speak volumes

To who you are and what you’ve experienced and yet

You don’t accept them. You fight them off with tense lies.

You hunch your shoulders, you type faster, you fill the seconds

Of your days with to dos. Your mind is made of lists.

Lists of ways you should be better. Lists of tasks you’ve yet to do.

Lists of ways to improve. Always learning and you're never enough.

Filling your mind with should dos and musts, creating

A surreal world in which you wish to make real.

Stifle those emotions, pocket that feeling for later.

High functioning anxiety means the world views you

As a success while looking beyond the messy messed

Up real version that is you. The about to crumble into a

Lump of I can’t you. The you that is on the verge of tears

At the thought of all you’d like to accomplish while being

Smacked with realization that you have limits. You require

A routine, self care, breaks and sleep. You’re not

Perfect in a superhuman sense. You’re perfectly imperfect

And fighting your own imperfections with keeping busy.

You’re functioning, you’re on a path that’s yours.

All the while you’re shaking from fear, anxiously

Nibbling away at the core of your being. You’re stressed.

You won’t let them see you fall apart as long as

You, your hands, your lists keep you in motion.

You ignore the downtime you scheduled in your

Calendar because you’re not ready to break, down.

Keep functioning, set the bar high. Keep doing more.

Keep an everlasting list of busy to avoid thinking.

Manage your anxiety by micromanaging your managing.

Chew your lip while you poor your conscious onto

A rough draft of your blank slated brain. Be you but

Be better. Don’t be good, be your best. Be THE best.

Just keep doing, keep being High Functioning Anxiety. 

Unavoidable Change

Unavoidable Change

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 […]

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?

It's occurred to me that not everyone may know what Interstitial cystitis (IC) is.

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 region and your metaphorical (or real) vagina’s on fire.

A quick trip to the doctor’s office and you’ve got your diagnosis, within a few days. Today, they send you home with antibiotics and the reassurance that there’s a likelihood you’re dealing with a UTI. They don’t warn you that birth control won’t be as effective on antibiotics and they also don’t warn you that your entire gut microbe will be brutally annihilated. They tell you to take the antibiotics to completion and you should be back to normal after that.

You listen. You anxiously wait. Panic builds when the relief you felt was merely brief. Instead you end up stuck in a cycle of medicate, symptoms die down, then flare up immediately following antibiotic regimen, return to the doctor, test for UTI, and repeat.  

Fast forward through 6 months of your “new normal,” urgency, burning, throbbing and spasming pain. You’re visiting your doctor weekly, have been for 6 months, asking for more testing as your symptoms persist, however your doctor keeps stating you don’t have an active infection. The last time you see this primary care physician, she explains in order for the test to be positive you have to have enough of the bad guys to test the antibiotics against to make sure they’ll work as some are strains of infection are resistant to certain strains of antibiotics. You’re told, there could still be a small number of active infection present in your urinary tract but all you can do is flush it out. Things like extreme urgency, sharp pain mixed with burning pain along side throbbing achy pain is all you can see or feel. You feel like you’ve finished your bathroom business just to need a toilet again in under 5 minutes day after day. Imagine trying to sleep like this, breath like this, and live like this. Your primary care frowns, tells you she’s unsure what to do for you and refers you to a urologist.

The urologist recommends she see the area, get a visual. Tells you it’ll be painless, shows you the pencil sized scope she intends to use to look inside you. She numbs your private regions with lidocaine and you hold on for the worst torture of your life. Not only do you feel everything, she tells you to look at it. After looking at the lining of your bladder and seeing what can only be described as blisters she retracts her camera and allows you to get dressed. In your now exasperated pain, you receive a diagnosis as she ushers you out of the door. She hands you a slip of paper with dietary recommendations and tells you you have interstitial cystitis, it’s incurable and lifelong. She tells you to take antibiotics and you’ll have to for life.

You’re diagnosed as far as the medical world’s concerned they solved your issue and you’re then left alone to wade through internet research and horror solo. Good luck.

Well that’s how my experience felt. I still have done more for myself than any healer has done for me but I had to. I was forced to accept my diagnosis or self advocate, try new things and attempt to heal. I’m working on that later.  This was me leading up to my diagnosis. It’s terrifying and terrible. I was told it was incurable but there are management techniques with diet and the help of my urologist. For now, I was to try a regimen of antibiotics and dietary changes. See (My Monster Has a Name) blog post for more on how it feels to live this life. I have never been interested in medication for life. The problem was all my symptoms persisted and weighs heavily on my mental self. Chronic pain quickly progresses to despondency.

The medical community defines, “Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go).I C may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain,” According to the Interstitial Cystitis Association. As pleasant as all of that sounds, it’s excruciating. All of those symptoms I’ve had. They disrupt your life, your ability to be intimate in a relationship and make you dislike the body you’re living in. A disease that has no known cure, and very little documented on what causes it with even less documentation about where people are successful. This disease has been ranked incredibly painful, and suffers experience pain on a scale similar to that of cancer patients.

According to Lori Smith of Medical News Today, “‘Interstitial cystitis (IC) is a chronic painful bladder syndrome in which there is the presence of pelvic pain, bladder pain or pressure, and urinary frequency or urgency. The pain can range in severity from mild to severe. It affects approximately 4-12 million people in the US alone, most of whom are women. The condition can affect anyone regardless of age, race, gender or ethnicity, however.

It’s my understanding and adaptation of the meaning Interstitial Cystitis to be damage in between the cells, and the possibility of infection exists there as well. I say that because in my experience, IC is kick started by infections from the gut, settling into the bladder and playing a fun song and dance of destroy! destroy! destroy! The dictionary defines “interstitial” in an ecology sense as “living in the spaces between individual sand grains in the soil or aquatic sediments.” According to the Mayo Clinic’s Definition of Cystitis, "Cystitis (sis-TIE-tis) is the medical term for inflammation of the bladder. Most of the time, the inflammation is caused by a bacterial infection, and it's called a urinary tract infection (UTI).

Interstitial - between the cells. This is why I don’t always show I have active infections. The infections can live between the cells.

My best assumption is that this fit my body’s throwing requires extra self care, stress reduction and healthy lifestyle changes.  

I’ve had some healers tell me that IC is autoimmune, where others disagree. (The AARDA lists it in their autoimmune disease list). Some articles mention trauma as a catalyst or genetics rendering someone predisposed. Foods ingested or drugs can negatively affect various body organs including the bladder. Celiacs untreated, un-diagnosed gut that’s distended, inflamed, permeable can also cause further autoimmune like damage or disease. When the entire system feels pain, is inflamed  nothing is safe and everything aches. I know for me it happened after trauma, stress and a series of antibiotics with minimal understanding of health or being healthy. The celiacs realization came after further testing. Either way this condition is one I’m working towards managing, learning from, and healing. It may require permanent lifestyle changes but with loving supportive family and friends I’ll overcome this obstacle.

Apple out,

K. Sullivan

Resources:

https://www.ichelp.org/about-ic/what-is-interstitial-cystitis/

https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357

https://www.medicalnewstoday.com/articles/304366.php

https://www.aarda.org/diseaselist/

Workplace Etiquette

Workplace Etiquette

A new employee at the office sitting right next to me has me questioning office etiquette. What makes others most comfortable? Why am I so uncomfortable? How can I be myself in the midst of constantly meeting someone new in the workplace?   I know […]

Psychosomatic

Psychosomatic

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 […]

A Day In Hell

A Day In Hell

I hear my alarm and close my eyes tightly.

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 rage. This morning it’s a desperate loneliness. I’m isolated in my state, unable to participate in normal functioning society therefore I’m a failure.

Ignoring the screaming urgency willing me to move I hit snooze for ten more minutes. Just delaying the inevitable. I don’t sleep in that time but I wish I was. If I’m sleeping I’m someplace else and unaware of the suffering I’ll endure during waking hours. I fucking hate when Frank’s fired up.

Every morning I’ve allotted myself 2 hours to complete a lengthy routine of self care to manage the level at which my body will deteriorate throughout the day due to stress and general use. Pelvic floor exercises, painful stretches, body rolling and a hearty deep breathing routine. If I’m lucky that will be enough to stave off some of the oncoming suffering. Today I’ll be late to work giving myself an extra thirty minutes of attention. I’m grateful my boss doesn’t question my frequent delinquency. It’s embarrassing enough my coworkers know vaguely about Frank. I’m a freak, a zoo animal with allergies or some version of sick.

I manage my diet meticulously. I drink my lemon water. Today I avoid the recommended supplements. I question their effectiveness. I only eat the protein rich breakfast of eggs the nutritionist recommended. I frown at the lack of apparent snacks as I’ve not meal prepped due to increased difficulty managing two jobs and trying to maintain what’s left of my social life. It’s not like I need more food, more reason to question what’s irritating my bladder and the surrounding areas.  If I don’t eat. Food can’t affect me.

I drag my feet leaving the house. Motivation and excitement evade me. Energy is a distant dream. I yawn to stifle a scream and leave for my desk job. I feel like I’m making motions but not really present. I’m trapped within myself feeling every second of discomfort without the ability to change it yet still moving through my days. I wear loose fitting clothing, cotton underwear and chew on my lip to stifle the burning tears attempting to escape my eyes. This can’t be my life.

The previous day was horrendous. I felt my pelvic floor spasm, painful and burning hot - All. Day. Long. A day that ended in tears and an embarrassing encounter discussing my disease with my boss. He was gracious, kind and listened but I’m ashamed I wasn’t strong enough to wait until later to cry or not cry at all. No amount of stretching, breathing or cursing would change the onset of today’s flare caused by the uncontrollable spasms. Please, body please stop.

I feel trapped by my inability to take adequate time I need to recover. Going to work is sure to increase stress and reduce my ability to cope with the pain. Not going to work means no money to pay for the supplements, the medical professionals, the physical therapy and all the other financial shit that tugs at my wallet. These catch 22 circumstances that have me pulling my hair out and breaking down in a sobbing puddle in the middle of my bedroom floor more often than I’d like to admit. I’d rather be in a puddle crying right now.

At my desk, beginning the longest 10 hours of my life, I attempt to ignore the screams coming from my loins. Maybe working will ease the obsessive thoughts in my head. The ones retracing my steps trying to figure out how we got here and what triggered Frank’s fire filled rage - the downward spiral that is my body rejecting itself with swelling, burning, urgency filled hell - this time. I’m exhausted, I need an out.

I sit at my desk, then try standing, then sit again. I instantly start researching my mortifying and excruciating symptoms on my phone. I work a few emails. My lip started bleeding. I switch to gnawing the other side. There’s a hole where my canine hooks into my bottom lip from repetitive trauma. I’m on the verge of panic but choke down the bitter taste of my own dismay. I read another article, respond to another email. I’ve been on this circular road for longer than I care to remember. Breathe, you’re alive, you’re in pain but you’ll survive.

By the day's end I consider the options. Give up. Ah yes, this unnerving nagging negative notion. The temptation to quit searching and submit to pain refusing to relinquish its grasp. Do I accept my shit lot for what it is? I remind myself I’ve had change. There’s been progress. It’s not everyday anymore. I’ve had days I feel better, I AM getting healing. Some days are ten steps backwards after one step forward. This flare is a temporary state and I’ll find solutions. It’s up to me to figure out the new factor that was the catalyst for this episode. I’ll find the healing means that work best for me. I’ll find and try something new. I have to, I can’t keep going on like this.

Persevere. Obsess. Fall apart. Pray that Frank relents. Obsess. Fall apart. Persevere.

 

Chronic pain will no longer control my life, I pray, I’m stronger than I think.

 

Apple Out,

K. Sullivan

Turn Auto Pilot Off

Turn Auto Pilot Off

How automatic are you in your day, in your life? How do you respond to the world around you? What patterns do you have? Do you compromise yourself physically with repetitive trauma, like carrying groceries in the same single hand and keys in the other […]