I'd rather work than be sick

Some things I'll write here so that people know.
I am not lazy. I AM sick.
What takes a few minutes for you takes much longer for me.
I live with chronic pain and the need to keep a toilet close by.
I can not eat or drink whatever I want without severe consequences.
Any activity I do, do comes at a price of more pain and more peeing. ANY. ACTIVITY.
I'd MUCH RATHER be healthy and WORK FULLTIME and have a satisfying career, than be at appointments all the time that are just to try and make my life semi bearable.
Trust me WORK is better than constant PAINFUL PROCEDURES that I do to try to find a way to live in some sort of way that is not ALWAYS PAINFUL.
So I am sorry that I am broken. I've done everything I can to fix myself. I have fought insurance, doctors, family and friends who assume they know what I go through 24/7 365 days a year.
At some point enough is enough and unless you go through this then I dont expect you to really understand or care.
All I ask is that you not assume my days are easier than yours, that I would WANT to be sick rather than well.

Emotional agony

I've always felt so alone here, in my body. Crying out in silence. No one could hear me when I spoke. No one understood the pain raging inside. No one understood how it struck out at my loved ones. No one one understood the grip of IC. The lack of intimacy fueled only by fear of pain. The fear of food fueled by fear. The fear of friendship because who wants a broken friend.

An innate self loathing, over something broken inside.  Who understands that intimacy feels like an assault? That friendships crumble quickly when you can't hold up your end. That sleep is fleeting if ever obtained. That going to buy groceries can take a Herculean effort. That work is just not a possibility. That renting redbox is easier because you dont want to pay 12$ for dirty toilets.

That no matter what you do, who you are, where you go, IC is a harsh cruel and vicious predator. Lashing out, striking in the midst of good and bad. You know there is no one who will help you, so you read every medical study, praying someone will finally comprehend this misery.

 Ever seeking for someone to care enough to help me. Wishing, praying begging doctors. Doctors who literally ignore you and dump you onto another doctor who will do the same. Repeatedly. The idea that I am worthless is nailed in deeper every time a doctor dismisses me.

Seeing outright lies on medical notes. For instance 20 years ago when I was desperate for sleep and doctor wrote "denies nighttime urination". The whole purpose of that visit was due to me peeing every 10 minutes and not being able to sleep.

It angers me. I wish I could line each of them up and make them experience this constant agony. I wish that they could empathize because they KNOW not because they think they know. I know that might sound horrible, but when you have just poured out how much agony you are in desperation and all they can do or will do is give a condescending pat and a lecture on learning to deal with the pain, it makes me uncaring.

Is this more than a UTI?

The fuckery of Interstitial Cystitis is that it mimics UTI's. However it does,NOT go away after antibiotics.


You may have Interstitial Cystitis( IC). In fact my guess is if you continuously have had UTI like symptoms without resolve you do in fact have IC. What is IC?

This is a disease that attacks the lining of your bladder,before reading this link please understand that any clinical description will gloss over or negate the PAIN.

http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439


 I have been fighting this disease 21 years and have had a diagnosis for 21 years. My diagnosis was fast, it only took about four months from onset.

That is actually amazing because many women, men and children suffer this disease for YEARS before knowing what they have.

Many will sadly end their lives because they can not handle the pain and symptoms and the lack of support. The sheer lack of empathy from doctors. I do not know how a physician can live with themselves knowing they are sadistic by not treating us.

 Treatment is still dodgy at best though, even with a diagnosis. You will be given incorrect information ( please I BEG of you do NOT drink the cranberry juice!).

 You will be treated like you are crazy or a hypochondriac. You will be treated like an addict if you dare mention the exceedingly non stop progressive pain.

You will be told that is is a mental health issue and that pain can only be resolved through therapy. IC is a psychosomatic response to stress, they may tell you. Many doctors will simply throw up their hands, so to speak because they can't offer you a “cure.”

This PRETENDING from medical professionals is a lie. This disease is real. It affects your bladder. You may have pain in your legs, buttocks, lower back, abdomen, kidneys and even down your arms. You will feel the sharp stabbing cramps, the burning, the never ending feeling of pressure to pee. Some cases are mild, you only have a bit of burning. Or you may just have pain. Or just have frequency.

You may unfortunately experience extremely painful sex or have extreme pain after sex because it causes a “bladder flare”. Men can also be affected this way. Undoubtedly you will likely experience crippling pain at some point.

It also affects your life beyond the bathroom. You can't just go to the bathroom and be okay.

You will repeatedly return to the bathroom. Over and over and over. Employers will get angry. Spouses and children will be annoyed that you miss so much.

You will find yourself avoiding events to avoid the angry questions or whispers and stares. You may be unable to work for long time periods. You may be unable to work at

Sadly there is not a cure, yet. There are a few studies showing some promise but at best bet it is permanent viral or bacterial damage or caused by a central nervous system dysfunction. For the love of your bladder do NOT do Kegals.

Your bladder struggles to empty itself and the muscles around it are over restricted. Kegals add to the pelvic floor dysfunction which only further irritates the bladder. Do seek out a Pelvic Floor Therapist.

There are a few “treatments” that some Urologists will ply. Elmiron, Ditropan, Mybetriq, Vesicare DMSO or Bladder cocktails which involve medicine being directly placed in bladder via catheter. Botox. Interstim. Et cetera

Supplements may offer some relief. Marshmallow root, Cornsilk, Uva Ursi, D-Mannose, Willowbark tea, Tums, Prelief, Uribel, Uristat( NOT The cranberry!) Chamomille, Echinea.

The other thing you will hear is dietary changes. YOU HAVE to modify your diet for this disease.
Cut out caffeine if it bothers you, cut out gluten, cut out sugar, lower your oxalate consumption, stop eating fermented foods, avoid acidic foods. Raise your alkaline content. Do NOT EAT or DRINK CRANBERRIES!!! I can not stress enough the importance of dietary changes. Healing Interstitial Cystitis Naturally on Facebook can offer you a starting step in how to modify your diet.

There are some promising studies of Marijauna and its component cannabadiol or CBD oil. It helps reduce pain, inflammation and spasms or seizures of your muscle. Your bladder is a muscle.

http://medicalmarijuanainc.com/interstitial-cystitis-medical-marijuana-research.

Oh holidays

 The holiday season has arrived. The time of year when avoiding food and drink can be daunting. The time of year you may resort to being a hermit rather than venturing pit in crowds. The time of year that bathrooms have long lines and checkouts take even longer than ever. Meanwhile your bladder rages on in a maddening tumultuous tantrum.

You see a sea of shining happy cheerful people standing at a parade but all upu can think is I need to pee right now! Oh my god I hurt so bad I need to pee. Oh my god if I dont pee now I may die.

Why do doctors not understand that this is beyond a minor inconvenience? When will IC patients be given true credence to what we endure? The torture of never ending pain and unrelentlous bathroom trips?

 How do we explain that this disease is all consuming. It pervades every and I do mean EVERY SINGLE aspect of our lives.

There is no escape. Sleep is a meaningless word if you know that youll be up in less than hour and very half hour at minimum.

Here have this wine have this chocolate let's get a coffee. Things you may hear repeatedly over the holiday season. All vivid reminders of how your life is not nor will it ever be normal. Your bladder is "allergic" to everything!

When hope fades

 When hope fades in the blink of a doctors note.
I got my hopes up with this new doctor. I mean, she said she cared that she would help me. And then she"fired" me. My body doesn't handle medications they can use so my options are PT and diet. Two things I already do. Things we discussed in my prior appointment. The first appointment was like a carrot of false hope. This appointment was discovering that carrot was empty styrafoam. My body is wracked by pain. Not one medical professional cares. Is it because up til now I've always sought non narcotics so they think my pain is not the level it is? Or is it that in the end they just dont care? Another day another night how much more can my body take. How much more can my conscious existence handle?

Urodynamics and IC pain

If you are an IC sufferer and you have a Urodynamics test be prepared for a lot of pain. The test itself was not so bad except I couldn't relax enough to pee even though I really needed to do so. After the test is the pain. My bladder felt like someone poured boiling liquid in it and then punched it repeatedly. I couldn't get any relief last night. Plus two days of 4+ hours in the car for this test also made me hurt worse. I dont really see much point in this test. They know I have Hunners ulcers already. It just one more procedure verses a prophylactic medication route. I know there is no cure and treatments are flimsy. There is no reason at all that I should be denied palliative care to include pain meds. No reason anyone should have to suffer this excruciating pain. Sorry medical professionals Motrin just doesn't cut it.

Social isolation

 Some chronic illnesses preclude one from being able to function much. Debilitating diseases like RA,MS,Lupus,fibromyalgia and CFS to name just a few. They attack the body. Inhibiting action. With a disease like IC or IBS we often have severe exhaustion physical weakness and the need to ALWAYS have a bathroom within a few yards, all of these diseases can be considered invisible illnesses at some point in their etiology. Patients are often ignored or dismissed spending critical time with wrong diagnosis or even no diagnosis. Getting an accurate diagnosis early on is difficult. What happens though, once you have the diagnosis and they dont know how to treat? There are limited options to offer or in some cases no options. When I was first diagnosed with IC there was literally nothing available except elmiron which at that time was simply unaffordable to someone without health insurance. So I tried things like willowbark tea and cornsilk. No soda. No cheese. No acidic foods. No fermented food or drinks. Come to find out all that cranberry juice I'd been told repeatedly to drink to cure the "reoccurring" UTI's was actually harming me. For a while I did okay. I was young too young to keep going to a doctor to say I'm not doing well. I pee too often and I'm always in pain.
I thought it was normal. I mean who didn't have to pee every single hour? Who could ride in a car for longer than 30 mins before needing the restroom? Certainly not I. I began avoiding events where I'd need to ask to use the bathroom where bathrooms weren't easily accessible. I adjusted my life to accommodate my needs. I joined the Navy thinking I could handle it I mean it was just like another job bathrooms would be available plus I'd have insurance to buy the constant antibiotics. I did okay. I had one pain flare lasting a few days that was masked as an UTI. I graduated bootcamp. I thought OK I will be normal. The months long antibiotics had at least cured the chronic lowgrade infection which reduced some of the symptoms. It was manageable. Then I got married. Sex was not always as enjoyable for me as I'd like but I didn't really correlate the sharp stabbing abdominal pain I'd experience after as being my IC flaring because of it. Then I got pregnant. Guess what's great about being pregnant? NO one thinks going pee 50 times a day is odd. I was finally "normal" despite my silent pain. I'd learned not to acknowledge how much pain I was always in. Grin and bear it. Fake it til its real. Suck it up buttercup. So I did, until during my 3rd pregnancy my right kidney stopped working. I had ignored a UTI believing it was just part of my normal IC symptoms. After that my bladder got worse and I had chronic kidney infections for years culminating in stones. Stones stones stones. If you think IC is bad ( which it is) try adding in literal handfuls of stones. You know what they prescribe you while sufferring stones? PAIN MEDS. Omg. My bladder didn't hurt. What a wonderful, if brief moment. So I was sent to my first urologist. Who looked at my chart and immediately prescribed ditropan. Which helped ease some of my constant urgency, mainly at night when I wasn't drinking anything. I thought finally maybe I'll feel better. I restricted my diet even further to include low oxylates. Which helped rid me of the constant jackstones but also means no more pain meds. I still get a few stones on occasion. My bladder however has only progressively gotten worse. I take ambient at night to try yo get an hours uninterrupted sleep. I was on ditropan 5 years but newest urologist took me off. I am still in chronic pain. A thousand papercuts with acid poured on with clenching hot poker clamps add in a few mule kicks to my kidneys and constant pressure in my chest wall. I do not go places often. Every trip is planned out to include bathrooms. Some businesses recognize me just because I use their bathroom. My husband does not even comprehend how bad I feel. He thinks if I go to bathroom that I then feel well enough to peruse through a store. No. I hurt. I just want to be at home in my bathroom.