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 […]
Tag: Chronic Pain
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.
I’ve always wanted to be a writer, poetry specifically has always called to me with a deep well of need. I thought desk life was going to be my destiny, and this belief became more clear through my job pursuits - customer service, ad service assistant, social media management - and a hobby writing on the side. At the onset of pain in my wrists while working chat support, I fed the belief that pain was inevitable. I believed my discomfort would grow, conquer and envelope my body slowly over time. Years of customer service work from behind a computer screen broke my spirit, crippled my writing dreams, and ostracized me from the face to face interaction I desperately craved.
Desk life had me feeling trapped. In pain, in repetition, and fueled me with a redundant lack of fulfillment. I believed myself to be dying inside, and out more quickly from behind a desk.
I had adapted the belief that ageing had to be painful, drawn out in a slow meaningless desk bound life. Customer service will quickly eradicate your self worth if you'll let it. Especially behind inanimate object telephones and screens.
Repetitive Strain Injuries (RSI) can be caused by repetitive motion. RSI becomes pain, becomes maintenance, becomes debt, becomes stress, becomes pain. This cycle was repeating for me daily and growing ever more bothersome the more hours I was chained to my desk. I was told at 25, 26, and 27 that this was a part of the ageing process, I’d need physical therapy and maybe even surgery.
I refuse to believe that with a quarter of my life behind me I am doomed to spend whatever time I have left with building, intensifying constant pain. After I had wrist pain erupt at 25, ergonomic evaluations only slightly decreased the burning sensations that shackled my wrists and forearms, tugging at my shoulders and neck, settling into my upper back and traps as a low grade and daily budding tension headache. I know from years of sitting with minimal activity is a factor in why my lower and mid back would ache. I believed these nagging injuries were the permanent side effects of desk life.
I tried life changes. I switched to running on breaks trying to get my blood flowing and counter the hours of sitting with moderate activity. At some point I even upgraded to a standing desk after a car accident because position changes were the only thing that made the desk life tolerable.
I transitioned to a new company, new chairs new keyboards new setup. It took 3 months for the tension headaches to start and my pinkies and ring fingers go numb while my wrists burned constantly. Again, ergonomics. Slight improvement. Upgraded once again to a sit to stand-up desk. This process took 6 months, all of which included physical therapy as the constant sitting flared my pelvic floor condition, Interstitial Cystitis.
Working at a desk, I cried sometimes daily if the duration was longer than a couple hours. I felt myself wasting away while I worked for someone else's gain. I could barely make ends meet for a reliable paycheck to paycheck pain riddled cycle.
How’d I change the rhythmic pattern of pain and work?
I was finally able to permanently break the cycle with The Rossiter System. Through my work with a Rossiter trained coach I was able to eradicate most of my pain while continuing to maintain full time hours at my desk job.
This work was so powerful and so effective I learned the techniques and decided to pursue a new career as a Rossiter Coach. Through this decision I could bring me back to my love of writing while I sought out to pursue a path in bodywork. This change will continue to assist and educate others on ways to work out of their own pain naturally. This system changed my life so much I changed my career pursuits from a broadcast journalism dream to that of a bodyworker by day and creative writer on the side. In The Rossiter System, as a coach, I’ve found the freedom to grow my own business and pursue my new career goals and hobbies while working as a desk jockey.
I’ve adapted new habits like foam rolling, Yamuna body rolling, and foundation training (see the links to these modalities below). I'm now a Rossiter Coach and though I still hold a part time desk job I no longer feel 3 times my age because I use this system for myself and my clients. Writing as a hobby is no longer a physically taxing chore but a passion again. I am able to restore gaps in my social life that were previously filled with pain and pain management. My busy life does require body maintenance and self care but with the tools I've learned and knowing motion is lotion I will continue to spread awareness.
I hear the past calling to me and reminding me not to make the same mistakes woman of history did. It's why I've found myself changing careers, simplifying my life and refusing to live on a deadline at a desk.
I wish to break free from this need to work ourselves to death. I want to believe we can find happiness along the way and be passionate about our daily lives and our careers. I believe people don’t have to remain stuck in their pain. I choose to believe that self care means taking care of yourself not just fluffy feel good things either, truly caring for the body you live in and being as comfortable as possible in it. I want to believe we are capable of more than just paycheck to paycheck suffering. I want to adopt new beliefs leaving behind the thought that we're doomed to repeat history with mistakes like this through suffering agonizing pain all for a cheap dollar.
The Tragedy of a Desk Jockey
Have you ever heard?
Illyse Kusnetz warned
The Matchstick Girl tragedy.
Phosphorus girls of the matchstick factory
Living forever as a staple of
The cheap poison phosphorus
coated their insides with each breathe.
Do you know the conditions in which they survived?
Bones lit up
Cancer crawled within
Was the pay worth the cost?
What’s living if you’re suffering in tremendous pain?
Have you ever heard?
Of Eleanor Swanson’s Radium Girls?
A soft glow they
Carried with them
Bodies filled with radium
Powder mixed with glue and water
Painting watch dials and painting their own nails
Tips licked stiff,
Was it fun to glow for your boyfriends
Pretty polished nails.
Smiling wide with no teeth
Was dying young worth keeping time
As a sad story of underprivileged - underpaid?
Have you ever heard?
Trapped in history’s Catch 22
Don’t you see the matchstick girl
circumstance in you?
Sitting at your desk
Breathing your stale, recycled air
Conditioned in this
Complacent box you now exist
Constant clicking on a deadline.
Can you not relate to the radium girls?
Hot Key repetition envelopes your wrists
Steals it’s movement
Trap it in a braced tunnel
Do you not feel the strain in your eyes?
Your neck? Your back? Your Legs?
Do you feel the atrophy happening?
As your cellular structure melds with the chair
As you take it’s shape
Evolved from poison chemicals to toxic
Screens and synthetic drugs to dull pain.
Be better, ignore how you feel!
Sitting is the new smoking?
So they ask you to stand at your station while you work.
Pain sears through every inch of you
Unused overworked body.
Why is agonizing for a paycheck a part of this
Middle class monologue
Decade after decade?
Brainless patterns of data entry
Broken numb social media scrolling
Even if you changed,
You demanded your existence mean more
You took charge of your days
You're already dead inside.
If your body could talk, what would it say about your needs and lifestyle? Would your body tell you what the gurgling in your stomach meant about your diet and how that would later affect your mood? Would it mention that you forget to warm […]