"Pain Is The Most Humbling Experience"

(Editors Note - This is one of the best patient essays we have received in years. Kimberly is a lovely, lovely writer and she captures so well the emotions, the daily journeys that we each go through with our diagnosis. This is a lovely contribution to the IC movement.)

By Kimberly B., Age 31

When the pain stops for even one minute, I feel like a wounded soldier sent home from war. I feel as if I have spent half my lifes energy fighting some personal battle that no one in the real world knows about or could ever fathom. I am in the dirty barbed trenches of a third world country and though I am bruised internally, wounded, and rotting, I have to keep moving and fighting. And there are no educated doctors here and no medicine advanced enough to touch the complexity of it. And like war, there is no emotion strong enough to respond to the vice grip mind fuck of a chronic illness and its infinite destruction. And every day I walk through mine fields praying that I won’t trip up and bring myself more pain. And everyday the mines are moved and a few hundred more added….and I am re-sentenced to a daily pilgrimage across them. And I come to realize that this is what life is: a daily battle with all your demons with no opportunity for escape imagined, drug-induced or otherwise. Except with illness your plight becomes narrowed and distinct.

In its clutches, my mind spends every waking hour cataloguing every bit of data I have ever gleaned about this disease, every theory, every side effect to every drug that never worked, every anecdote of hope I have ever read, this grocery list of related conditions which I simultaneously dismiss and watch like a dog for. I remember every word, technical or arbitrary, that any specialist, doctor, nurse, or assistant has ever uttered to me. And once this information is catalogued, my emotions are armed with every dead end, and at the same time respond to every message that every single sensation in my body sends. And I am constantly on alert for every single possible contributing factor that could by any stretch imaginable or unimaginable be a clue that could bring me some peace. And when I give up on any medical relief, I turn to the metaphysical. I map out a flow chart of causes and effects, of blame, and all combinations of bad hands, wrong turns, societal evils, and predispositions that could have led me to this fate where I have to face the fact that my life and now my body is forever faltered.

Then, it dissipates, and I feel like a war veteran, relieved and forever burdened, and somehow cleaner, somehow more inherently deserving of this reprieve, no matter how small, thankful for the chance to return to these simple moments that require little more than rote joy. And so, there I am in the middle of some otherwise mundane task that suddenly somehow feels sacred, as if the light of God was shining through me as I gratefully hand dried the last dish as if it were the last dish from the last supper. And I begin to think, maybe that’s all life is, the blessed opportunity to feel joy for no reason at all.

Chronic illness forces you to see the long view because the here and now is too painful and confounding to dwell in. And chronic pain demands a reckoning of epic proportion. And I am well due for one. The depression I have suffered for so many years. The post traumatic stress of growing up with a manic-depressive mother. The panic attacks. The palpitations. The acid reflux. The cyst the size of cantaloupe just extracted from my thirty-year-old body. And now this. I beg to God and anyone and mostly myself for an answer. And I think of the wreckage upon which my family was built and I ask where? Where did this start?

On the battlefield? In the womb? In my mouth? In that first moment I feared her or felt shame? Did this revile in my throat start in the post traumatic fall out chattering in my grandfather’s false teeth, as he barked frail orders at my grandmother, and stuttered toothlessly, “you o-old bitch”; the clothes hanging form his crooked specter of a spine. While in the Florida room, my brother and I crammed sandwiches into our round sunburned freckled cheeks and reveled, for the moment, in the knowing on some young subconscious level, that it started way before us.

When you come from a dysfunction, there’s a disconnect that leaves you reeling your whole life to find solid ground. No matter how far away from it you get and no matter how many things you fill your life up with, there’s still this cosmic loss. There are no traditions, no holiday hams; the recipe box is empty. And just when you think that living through the long song of forgiveness will be the greatest act in the production of your life, you find out there’s more. There is life after the mess. And you find yourself trying to figure out what it was you were supposed to be doing all these years that you were just trying to make it to the next reprieve. To the next normal moment that by the time you get there, it seems too late. And you look around only to find that the most incorrigible connection between yourself and your ancestry is this progeny of illness….

The first sign of it came in Albuquerque New Mexico. It was 1997 and I was partying with friends on a regular basis at the time. I remember how insidiously it crept into my life. At first I just noticed that I had the smallest bladder on the planet. I can remember being out with friends and after one beer or diet soda I was in the bathroom probably ten times. I felt like a walking sieve and I guess I was. As long as I wasn’t drinking I was okay. Caffeine had always bothered me quite a bit but I didn’t give it too much thought. And there was never any noticeable lasting affect.

Then one night before falling asleep I remember getting the strong urge to pee though I had just gone. I got up and went and would feel better for a while but would get the urge again just before dosing off. That’s it, I thought, I haven’t had a bladder infection in a while; it’s time.

The next day I went to the urgent care with my girlfriend and to my astonishment was told that there was no infection. I can’t tell you how baffling this was to me to have these symptoms and not have them associated with a bladder infection. The doctor and nurse there were quite unaffected by this, of course, and offered the possibility that it was nerves. They offered me a “bladder relaxant” and an antidepressant and sent me on my way. I took the bladder relaxant but couldn’t tolerate the antidepressant and didn’t continue either of these. The symptoms seemed to go away unless I drank something to irritate it. They came back again on a road trip with friends and kept me straining to make it to the next pit stop and asking that they stop on the side of the road the entire trip. I remember making several trips to the bathroom before sleeping when we were there.

These episodes came and went for the most part vanishing without consequence. I quit drinking around this time as well and began making plans for a big move.

In June of 1998 I moved home to Florida. The first week of my move was very stressful for me. I did not have a job or a place to live and was very uncertain about a good many things in my life. That week I got a very severe bladder infection that did not respond to the first antibiotic treatment at all and seemed to never quite go away. From that week on, my life has been forever altered.

I completed the antibiotic treatment for this infection but was never able to sleep through the night again despite the fact that follow-up tests showed that the infection had cleared up. I allowed myself to suffer for a long time with this condition, the inability to go to sleep at night, for a number of reasons. First, I was teaching as an adjunct for the community college and had no health benefits and could not afford private insurance. In addition, I was able to sleep with Excedrin PM or Valerian root, but without these I had a very long haul ahead of me each night. Also, when I finally did get insurance and went to see my gynecologist, she was unconcerned about my condition, or I was unable to express the seriousness of it, and it took her a while to refer me to a specialist.

Being sent to a specialist gave me so much relief. I had hope. Of course, he checked my urine for an infection and found none. I told him about my frequency at night and he asked how many times I got up. “What one or two times?”, he said, as if to dismiss it. “Try ten or I wouldn’t be here”. He was concerned. He performed a cystoscopy, a procedure where they thread a scope into your urethra. I don’t know about you but I could not imagine that there was room for anything in my urethra and the idea of him inserting anything up there was pretty wacky. But I was desperate enough to let him do whatever he wanted. The procedure was painless but the aftermath was not. After taking a look he said that my urethra was inflamed, prescribed three months of antibiotics, and three other medicines to help with frequency urgency and bacteria in the urine and I was on my way. I could not have been a happier girl. I had a $90 bag full of pills from Eckerd’s and I felt like a kid with candy. My nightmare was finally going to end, but, unfortunately, it really had not yet begun.

After a few months of this regimen of pills, I did feel better. I was sleeping through the night once again. I felt as if I had won the lottery and I felt a part of the human race again. I wasn’t just being punished with some mysterious condition. I was fixable just like everyone else. The world was a better place.

Then after only a month, it came back with a vengeance I could not have ever imagined in my wildest dreams. And it came to stay.

John Milton described the angels in Paradise Lost as having no biology to imprison them in the clutches of the cycle of our bodies, and the ensuing needs and dependencies. All humans are burdened by their biology but I think only the chronically ill and junkies are acutely aware of it. The normal cycles of our bodies are brilliantly timed to allow for us, as humans, to be able to live our lives and still meet our needs for nutrition, elimination, and sleep. But when something is out of kilter the cycles become exaggerated throwing your whole life into a tailspin. Suddenly, it’s difficult to sleep or think or do anything other than tend to your biology. Often the disease makes me feel like a junky. I feel beaten down by the need to go the bathroom every ten minutes. I am bound by pain that recurs and plagues me if I can’t find a bathroom soon enough. I can’t fight it no matter how hard I try. I have to give in to the demands of my body even though they have become unnatural and life altering.

I was in Austin now, trying to take graduate courses, when it hit me like evil curse, affecting me even in the middle of the day. This time I was convinced it was a bladder infection because of the severity. I went to the university clinic and hit a brick wall when I found out, even this level of horror, was not an infection. When I broke down in tears, thankfully the doctor gave me the break that put me down the difficult path of finding a name for this incorrigible condition. And around that time I wrote this passage:

“And it’s 4:00 am and I feel like I have been bled and all my veins have been filled with lead. I have beaten a heavy path to the bathroom that I revisit every five minutes to reopen the burning wound that has become my urethra. My face has erupted like a fissure into tears, snot, and the wail of the atheist pleading to God, to tell me what great sin brought me to this fate. But pain turns everything on its head and makes even unending regret seem bearable. It redefines every beginning and every ending, every aborted dream, the very scope of life.”

One of the most devastating things about this illness for me when it first made its grand entrance into my life in 1998 is that it made a train wreck of the most fundamental cycles of life. For the first year or two, I could put myself to sleep with Excedrin PM, but after a while even the self-concocted cocktail of Nyquil, Excedrin PM, whatever bladder relaxant my latest urologist had hastily prescribed, and a lot of pot could not usurp the reign my bladder was having over my nights. The pain that this condition brings is so severe that it is said to be comparable with end stage cancer.

Pain is the most humbling experience. Chronic pain, pain that may never go away. Pain that no matter what you take may never go away is one of the most ineffable things. When you have pain the whole world around you disappears. Deadlines, people, appointments, habits, good and bad, projects, to do lists, and planning for even the next moment goes right out the window. And sometimes, it has to get worse before it can get better……

After living on and off with IC flares that varied in intensity for several years, my body began the process of telling me something else was desperately wrong inside me. In July of 2000, I got my first actual bladder infection in many years. Those of us with IC, know what I mean when I say, I was ecstatic. It was proof that my pain was warranted. What ensued provided further proof that my body was screaming at me all this time for a reason. The price was, of course, more pain. The bladder infection did not go away with the first round of antibiotics. The doctor prescribed more. I developed a resistance and yet the doctor prescribed more of the same medication. The doctors and nurses were frustrated and making mistakes. I was frustrated. I tried another urologist, as my current uro was both a gynecologist and a urologist, and I thought someone new might know more. I was desperate. The bladder infections would clear up for a week and then return, no matter what antibiotic they gave me. After several months of this, they sent me for an IVP to check my kidneys. And, they found something! A ‘blockage’, in my left kidney and scheduled me for a procedure where they planned to feed a scope up into my kidney to examine it further. I was again ecstatic. What if they found it? The reason for all this pain. I had a funky kidney. It made sense. Why not? During the procedure, they would also take a better look at my bladder, do a biopsy, and check the constitution of the bladder, all the normal run for a suspected IC bladder.

It was a day procedure in the hospital and I would be home after lunch. Instead, as they wheeled me towards the door, I doubled over in unbelievable pain, and the doctor advised to keep me in the hospital over night. I was there for four days. I had so much pain in my kidneys (‘flanks’). And the doctors there told me that there was air and water surrounding my kidneys and bladder after the procedure, which caused them concern. This was not supposed to happen with this procedure. I was on morphine to help with the pain and had a catheter in until several days after I left the hospital to give the bladder time to heal. At least it gave me some relief from my trips to bathroom, which for the last six months had been constant. During my stay, the doctor ordered several other tests. A cat scan, which is a very uncomfortable test where they sent a fluid through your body and then watch it flow through your organ, while spinning you around on a rotisserie. My kidneys were in such pain that I felt every drop like lead and the spinning made me want to puke. My urologist also ordered a pelvic ultrasound. At this time the nurse had tried to remove the catheter, but I could not go to the bathroom on my own and was in desperate pain with they sent me to have this test. The Xray tech that performed the exam made the pivotal discovery. At first he was only doing the exam from lower abdomen, when he, sort of, off the cuff, decided to do a vaginal ultrasound. He had said, I am just going to check one more thing, after saying that he didn’t see anything in the pelvis. When he began the exam, he said something that indicated he had found something that he couldn’t explain and took a lot of pictures. I was wheeled back to my room and re-catheterized. In a only a few hours, my doctor was standing in front of me saying excitedly that they had found a cyst the size of her fist in my pelvis and, she said, what if this has been causing you all this trouble……….I don’t think she realized the extent of my history with this, and the words needed time to penetrate to the core of me. To the core of the person that had become a walking illness…….but what if?

Over the next couple days at the hospital, I saw several different doctors and each one said that the cyst was larger than anticipated upon closer examination. I was to return in a week’s time and have an exploratory laparotomy to have it removed. I have to admit, I was so conflicted. I had been in pain for so long, had had so many false hopes, that I was cautious. I wanted to believe I wasn’t one of the cursed after all. I wanted to believe it could all be over. But I knew, that was too much to ask. But, what if?

Up until the day of my surgery, I had a bladder infection and pain every minute of the day and night. I signed all the forms, had my margarita and woke up in the recovery room with a long incision going down from my belly button to my pelvic bone. I was nauseous but not in much pain. The drugs were good. I remember how difficult it was to get out of bed for the first time after surgery. I walked as if I was afraid that my guts were going to spill out for months after. I was hopeful. But after only a week out of the hospital, I got another infection. I remember my call to nurse at the doctor’s office, the one that had just performed surgery. I was crying and told the nurse that I felt that I had an infection. She was short with me and said it was probably just my IC but to come in anyway. She called me later that day and apologized and said that I did have an infection. Looking back, I don’t know why I ever put up with the kind of service that the nurses provided. They were often frustrated and difficult to deal with. It is so hard to be an IC patient. You are at everyone’s mercy.

Following the removal of the cyst, my pain and agony dramatically increased and I began to have to deal with a new element of IC madness, retention, even after the bladder infections stopped and I just had the IC again. Almost everyday, I would fight to get dressed after getting no sleep or being drugged enough to get some, and then, with the pain never ceasing, get on the road to work, only to stop midway and head for my urologist, knowing there was almost nothing she could do. I was at the point of calling Dr. Kevorkian. I told myself, if I am not better in six months, I am calling him. I had endured almost constant pain since the chronic bladder infections began not to mention the IC, which is a beast in itself, for several years before that. I would say that I was at the end of my rope, but with IC, you never have a chance to get there. You can’t stop fighting. You don’t have a choice.

About five months after the surgery, the constant pain began to break. And over a period of several months I returned to the point that I could almost manage my IC. I am lucky to have had a job that worked with me and a partner that stood by me. I could go on about how misunderstood this condition is, even by those who claim to understand it. But I won’t. There is more work for me to do and I would rather like to focus my energies on trying to find a doctor that is willing to explore with me. I feel that there is a connection between endometriosis and IC that is being completely overlooked. The discovery of an endometriomal cyst the size of a canteloupe in my pelvis opened up an entire new theory of my IC. After my surgery, I began to put the pieces together and I plan to continue to bring my findings and my questions to my doctors until I find the answer. For now, though I have flares that send me reeling, I have been able to live with my IC. I have had so many moments, even days, months, that I don’t have to put my life on hold for IC. Moments I thought I would not have again. I am working towards having many more.