IC Journey

Where Things Are Now

Posted in Uncategorized by LJ Johnson on April 4, 2014

Well, a few days ago, I got my Social Security Disability re-evaluation paperwork in the mail. It is due by April 12. I have really struggled with disability, not just with being so sick that working consistently is difficult (and even harder for an employer to accommodate), but with the stigma (especially with some of the lovely words exchanged by candidates electioneering) attached to being someone who “won’t work for a living.”

Even though most confidential surveys find that one in four interstitial cystitis (IC) patients at any given time are considering suicide, and the end stage disease cycle (Hunner’s ulcers, drastically reduced bladder capacity, intractable pain, most/all less invasive treatment options failed) is supposed to have pain comparable to stage IV cancer and quality of life scores lower than end-stage kidney disease, it still bothers me to not be who I expected to be. It is even more frustrating to have fallen into the same place that many who are on disability end up in – as I have been sick, I have gotten sicker. Please understand – many IC patients consider what I accomplish in a day a miracle (even though some days all that I might share is all that I accomplished). I still manage to get my son to and from a great deal of his activities (and am blessed to have help when I can’t), and manage to do the light and brief livestock chores (I have chickens – I feed them, water them and gather the eggs, which takes less than 15 minutes a day; my son cleans the chicken houses and moves the feed for me), and may get breakfast (eggs if I’m able, cereal if I’m less able) and at least four or five days a week dinner (on a bad day it’s leftovers; my son is getting really good at doing cooking for me). If I am flaring, whether it is caused by weather changes, an additive in a food that I didn’t know was there, hormonal fluctuations, or just because, well, just because, that can all go out the window, and I spend the day in bed and feel guilty as the world moves on without me.

Just getting over that right now. With interstitial cystitis, you are much more prone to bladder infections, and often (at least in my case) they end up becoming kidney infection not long after you decide they are probably there. I started feeling “bladder infection” last Thursday, but couldn’t get in to the doctor until Tuesday for a variety of reasons. By then my kidneys were barely functioning because of how bad the infection had gotten, and I was sick as a dog. Sick where sitting up made you break into a cold sweat. While I was waiting for the doctor I seriously considered laying on the floor when it got really bad – the little exam table thingies aren’t the most comfortable, would have been warmer, making the nausea harder to take, and I would have had to figure out how to extend the foot support thingie and that all just seemed too complicated. I worried, however, if he walked in to me lying on the floor he would have hospitalized me no matter how hard I tried to assure him I was only a little sick and maybe I would be better after just one course of antibiotics.

It is hard for me to fill out social security paperwork. I don’t like being one of ‘those 47% people who are bleeding the rest of us dry.’ I paid into the system for years. I worked hard, sometimes clocking 60 or 70 hours a week. I liked working, liked accomplishing things. Except for “leaving my station too much” (my frequency has been over 20x/day since my teens and I decided it was normal for me and ignored that symptom most of my adult life) and high absences (pain would make me so sick I couldn’t get out of bed, then disappear again; rather than having a doctor think I was a ninny, I decided on my own it must just be “mittelschmerz” or hormones, or SOMETHING, all the time being angry at my body for reacting so badly to the pain that I would turn white as a sheet, shake and sweat bullets for 24-48 hours here and there, then go back to normal). I ignored those little “normal for me” things so long that this disease has done permanent nerve damage, as well as putting a much under-appreciated organ (the urinary bladder) into failure. I don’t know if I had acquired a diagnosis in my early 20s if I would have fared any better or not – there are still not a lot of effective treatments for this illness. Research is letting them know WHAT is going on better, but they are no closer to the why’s, and without them, they aren’t sure how to make it stop.

That’s where things are now. This time I get to add the fact I have severe osteoarthritis limiting my mobility and that I am scheduled for wrist arthroscopy, have tried all of the treatments I can afford (some are considered surgical procedures when they are billed, and I can’t afford to do things like that frequently, and urologists I have consulted aren’t as excited about interstim for IC as others have been – they say it helps greatly for frequency and does nothing for pain, etc., which is a big part of my problem at this late date) and mostly subsist on pain medication, self-administered medication installs directly into the bladder (would cost me a $200 copay each to have them done at the office) and self-will.

I think the hardest thing is the worry that I will somehow be rejected and forced to leave the 47%. Without an employer who would pay me full-time to work part-time and ignore absences, I wouldn’t keep a job. It is physically beyond my abilities. So I fill out the paperwork, feel all the shame of admitting my many shortcomings, and wait.


Reality is a big ol’ sledge hammer…

Posted in Uncategorized by LJ Johnson on May 3, 2010


Wait, now I sound like Emeril?

Things have not gone as they should around here for over a year (since I quit doing practically everything once I got sick). I have noticed that K works for just about as long as J works, and then suddenly, no one is working. Today when we got a new weed eater, they both took turns, then K turned on the riding mower, told J to do some of the push mowing (which he did half-assed at best). I decided to do all the weeding I’ve been avoiding because I knew that it would end up making me feel rather sick (lots of bending and straining seems to do that to me).

For the first time in ages, most of the lawn (except the part that has been studiously avoided since last fall) got mowed. I have already resigned myself to having to push-mow that entire section myself since it has raspberry and blueberry bushes and the operating theory is that I am the only human being in the world capable of locating them. So… well.. yeah, that’s how that goes, too.

This family cannot cope with me not doing 90% of what goes on around here. They can’t even pick up their own dirty laundry or trash – what was I, dreaming? when I expected them to actually be able to do yard chores without me going along behind them to do them right?

I have decided that the only way to make this work is to work myself sick, take however many days to recover, then work myself sick again. That way it will be demonstrated I’ve done every darn thing possible, everyone will be motivated to get a heck of a lot more done and I won’t have to wonder if I’ve done enough. I’ll know I’ve done enough because I’ll be in enough pain that I can’t sit up for any length of time and getting to the bathroom to pee without puking on the way will be a major accomplishment. Maybe I’ll even be exhausted enough that I’ll actually sleep through the few drops of urine that trickle into my bladder to wake me up and make me get out of bed again two or three hours after I lay down…

… a girl can dream, right?

And Now for the Rest of the Story…

Posted in Uncategorized by LJ Johnson on April 26, 2010

Actually, I had nothing witty to say yet (I’m so tired it is hard to think straight!), and that, and so many of the old Paul Harvey broadcasts popped into my sleep-deprived brain. I think people listened to him as much for the sound of his voice as the content of the stories. Something in the slightly-raspy timbre of his voice was very comforting. I have a thing for voices, though.

Today it hurts to walk. However, there was a kid to get to school, animals to feed, and the kid I sent to school was once again out of clean t-shirts (I think part of the issue is that they disappear, but right now I don’t know where they went to because his room is clean and usually anything that doesn’t end up in the laundry is easy to find – you trip over it on his floor!), so I had laundry to get started or the school might get a little cranky. They’re actually pretty adamant about equal rights at that age I guess – if girls can’t be topless, the boys have to keep it covered, too.

I hate it when the pain gets to this point because my doctor worries that any more pain medication will make me non-functional (strangely I know of IC patients on much higher doses of narcotic than I am, granted, I don’t know how many hours they spend awake each day). There are probably also days where I would trade in functionality (not all of them, but at least a handful a month) to have the pain at a low enough level that it doesn’t interfere with my sleep and doesn’t make me want to stay still in one place with a heating pad. At the same time, at least the pain medicine works to a point where I no longer turn white as a sheet and start sweating like crazy every day. It’s down to only once or twice a week most of the time.

Yes, today’s title has absolutely nothing to do with the post. Welcome to the surreality of sleeplessness. Random thoughts kind of flit in and you grab them as tight as you can, but then you have neither the energy nor the focus to actually follow them where they might lead. At least I’m someone who is easily amused.

It is hard, even shaming, to ever approach my doctor about my pain management. I think there are things I will do here first before I pursue any increase, including starting the New Dawn Pilates DVD that I ordered (hasn’t arrived yet) in hopes that it will help make things better, quitting sugar cold turkey (it increases inflammation), and spending more time reading my Bible and praying (often credited for reducing pain and stress). Might also add more music – have read that music alone can reduce or eliminate pain. In the end, the truth is that ANYTHING that you can change your focus to always reduces pain. I have lived with pain of varying levels for a long time, actually. I think it is one of the most frustrating things about pursuing pain management – it feels like they believe you didn’t start having pain to any degree until you asked them to treat it. They don’t know of the years I used ibuprofen and tylenol and still had times when the pain would make me physically ill, but if it didn’t last more than a day or two or I had the occasional pain pill that hadn’t been used up when prescribed, I would add it (being very aware of the amount of tylenol or NSAID to be sure I neither conflicted nor overdosed) until things were where I at least quit feeling physically ill.

I am neither an addict nor a whiner (yes, I know anyone who stumbles across this on the internet will raise an eyebrow, or maybe even laugh at the last part – if you’re in the medical profession you might laugh at the entire assertion). I’ve found that, in real life, complaining usually never gets you anything except other grumpy people around you and, ultimately, people who avoid you entirely. No one CARES if you don’t feel well, are having a bad day or just endured the biggest tragedy of your life. They just want to know if you’re going to smile at them, make them feel good about themselves and maybe give them what they expect from you. Operant conditioning maybe? The latter is all rewarding behavior. People believe they should get a reward just for looking you in the eye and not calling you names sometimes…

I know as a Christian I am called to serve in love. I know the past few days I have been very sinful because my heart and attitude are not where they should be, and I would be ashamed if someone who didn’t know me took these past three days and expected THOSE to be an example of a “Godly” life – what heartbreak! I read Psalm 51 yesterday, quietly and aloud, to myself, and ended up in tears more than once. Though I have hurt others, every single thing I’ve done has been an affront to God, and I KNOW that better is expected of me. So today I pray that God will give me the strength to be who He wants me to be within this, and to have the joy that comes from being chosen to endure a more difficult trial so that He may perfect my love and my heart, and prepare me for the day when I am ready to be with Him.

If That’s Your Idea of “Extending the Olive Branch” You Need to Get a Bigger Branch…

Posted in Uncategorized by LJ Johnson on April 25, 2010

… that way it will sting a little when I smack you in the head with it.

I could end it there – shortest post ever! HA!

Sometimes one of the most hurtful things is when someone you love is a complete jerk to you and their excuse is that they feel like you do every day. All of those days that you make them their breakfast, do their laundry, pick up their dirty trash or dirty dishes, or the laundry they left on the floor…

“I hurt all night and didn’t get a lot of sleep and I don’t feel well.”

Uh huh. You mean like I feel every morning I make you a hot breakfast?

“I don’t like getting up at six a.m., either.”

Like I do five days a week, even on days you don’t have to because there is also a child to get ready for school?

No, those weren’t the responses, though there was a mean quip when my head first got bit off. Then I realized the only way to have peace in the situation was to act like I was the mean person, the one who was not taking the time to understand or care about the other one, and I did.

Really, though, when things calm down and HE feels better and I’m no longer in the mood to rip someone’s arm off and hit them repeatedly with it, I think I will share that thought with him. Usually we both have a sense of humor, and life, at least, is usually good for at least a laugh or two.

Sometimes I Just Want to Say I Don’t Give a Damn

Posted in Uncategorized by LJ Johnson on April 25, 2010

Sadly, that, too, would be a lie. But I am SO tired of caring. I am so tired of putting everyone else first and trying to be a good friend, good partner, good mother, good sister, good Christian (oops, should have put that first), good pet owner, good chicken owner (why oh why oh WHY did I ever do that?). Sadly, the truth is I love everything. My whole heart just wonders and takes joy at the individuality of every single creation, even trees, flowers, grass. Okay, thistles and poison ivy, I kind of have issues with those, and maybe mosquitoes. Nobody is perfect.

Sometimes, though, I get so darn TIRED. Not a physical tired where a nap would make do, but just a sick and tired of dragging myself through giving every ounce I have, spending days on end drinking less than a quart of water so I can meet everyone’s basic needs while FAILING to be who they really need me to be because I give them every bit I am capable of. I get to a point where climbing into the nearest quiet and safe place, curling into a protected ball and placing a “Please, leave me alone, let me breathe and give me peace” sign is all that I yearn for. I don’t WANT to have you wake up ten minutes after the pain medication kicks in and I can fall back to sleep and then make a big deal over how your nose is runny and it’s morning and you’re hungry. You cooked for yourself and four kids for twenty years, and if that’s too much effort, there are leftovers and cereal. Do you REALLY need to have scrambled eggs with onion and peppers, drowned in melted cheddar cheese for breakfast today, too?

After a while the thirst gets to you. In a weird way it is background noise – always there. I guess it’s kind of like anorexics and food. The nice thing about IC is you don’t actually fantasize about water. You fantasize about Pepsi, or grapefruit soda (loved that stuff), or a nice big glass of orange juice or cranberry juice. Luckily, that makes water not all that appetizing, so usually you can still maintain the self-control. Until, of course, you take a drink. Then reflex takes over, and you’d better hope you only have a half-liter bottle in your hands or it’s game over for the next two hours.

When you are required repeatedly to do things that require more of your focus and time, and regular hydration interrupts you three to four times an hour (and also starts you into retention, which causes a constant need to go feeling and an inability to empty), you quit drinking. Otherwise you couldn’t cope. If, say, your family has shopping trips planned for four or five hours of Saturday, followed by a birthday party, followed by five hours of activity for church Sunday and say another trip to the store for the running you didn’t finish Saturday, and Monday requires yet ANOTHER errand, and Tuesday requires a trip to the doctor’s office to pick up the prescriptions that can’t be refilled by phone AND a trip to purchase the final decided item (we’re shopping for a new water heater) from all the running SATURDAY, your body goes into its own rebellion, because it is as aware as you are that it means days on end of lack of hydration, muscle spasms and other lovely fun.

Though all of this is a conscious decision, in its way, in its maladaptive coping mechanism (the only other way is a foley catheter, and I’m just about desperate enough to, but not sure how the resulting bladder spasms would affect ability to travel and walk), it is one you end up resenting, especially the more frequently you choose it. Part of you, every time you abuse your body just to cope, feels increasingly unimportant, uncared for and taken for granted. When the person beside you in the car is contentedly sipping his 44-ounce beverage, and the kid in the back seat is guzzling his 20-ounce Mountain Dew and you just allowed yourself enough water to swallow the next dose of pain medication, took two deep breaths and put the cap back on because it’s a half hour until the next bathroom, it starts to hurt.

If there are any other stressors on top of it – promises not kept, feelings hurt, anything else, it is the HARDEST thing in the world to maintain the “I love you and will choose to love you and be the best person I can, because that is part of this journey and the way God is testing and improving my character” attitude that you KNOW you should have. Instead you become increasingly cranky, especially as you miss your normal time to do a bladder instillation and rest when you’ve already had two periods of less than three hours sleep each (probably less than five hours total, if that) overnight and been manipulated into making someone’s favorite breakfast, yet again, and once again had them find something wrong with it (this time it was the flavor of the tea, I believe).

Starting your day that way really limits grace in a fallen creature, and sadly, no matter how much I try, in the end, it is what I am. Tomorrow, if I’ve recovered enough of my attitude, I will have to ask forgiveness and try again. And pray, I guess, that God grants me the forgiveness and grace to love my family regardless of the dirty laundry they leave on the floor, the lack of thank-yous for meals prepared, and the complete expectation that I should always be available. They’re only human, too.

Please, God… erase these lists from my heart and make me a better person. I am promised that I can do all things through Christ who strengthens me. Thank you.

A Little Desperation Is a Dangerous Thing

Posted in Uncategorized by LJ Johnson on April 21, 2010

That is probably a minimization. I am likely more than just a little desperate, though I wouldn’t think that I’m REALLY desperate.

To start – if raw foodists or vegans find my comments insulting just because they don’t accept the supposition that living on nothing but fruit and vegetables with the occasional handful of nuts or pulses is really much better for you, they are welcome to flame me. I’ll use the resulting heat to grill something that used to have a face. 😉

Someone friended me on Facebook a while back who is a very forceful proponent of raw food for healing. She insists that a diet of pretty much fruit and “green smoothies” (a smoothie made in the blender with greens) and an admitted handful of nuts every three days has cured her of every disease she has ever had, and that it is the only true way to heal interstitial cystitis.

I know that the diet she suggests lacks Vitamin B12, regularly suggests the ingestion of incomplete proteins (she makes NO differentiation between a complete or incomplete protein and her food combining, rather than focusing on protein completion, focuses on the meal being very alkaline and being easily/properly digested) and can be either difficult to maintain and/or dangerous in the long term. I’ve asked her very pointed questions about it, and she tends to refer me to books which have little research, a lot of glowing testimonials and more of the same information. She assures me that I just have no understanding of the “real science behind it.”

Here is where it is frightening. Though I was trained in appropriate dietary management a lifetime ago when I worked as a residential manager in a group home, and I KNOW that a vegetarian diet that is sustainable and healthy will unfortunately require at least the occasional ingestion of eggs and/or milk OR possibly amaranth, buckwheat and a few other rare complete protein foods that are plant-based, I am STILL tempted by her continual encouragement. When I’ve asked her about including plant sources of protein, or an awareness of food combining to complete proteins I am told that the combinations (beans and rice, for example) are acidic, and must be avoided. The only SAFE foods are a set list of fruits and vegetables (root vegetables are also prohibited, as are squash). If it isn’t on an alkaline food list, it’s definitely out.

I know this diet is unhealthy. I also know that oxycodone, soma, gabapentin and imipramine ALL cause fatigue and drowsiness, as well as constipation, and all are required for my pain management. I struggle daily with the question of whether or not their continued use is something I should be doing, or if there is “better” out there, and what it is. Further, since when fully hydrated (i.e., drinking the appropriate amount of water for my body weight) I am in the bathroom 3 to four times an hour (lately usually four), and hesitancy can make it take me five minutes to empty my bladder, a third of my life is spent in the bathroom at this point. If I want to leave my house, I avoid all fluid intake except enough to swallow medication, and skip my blood pressure medication because it contains a diuretic. This allows me to only use the bathroom every half hour. It has become such a bad habit that I have to remember and CHOOSE to have “hydration days,” and also know that the third day begins muscle spasms every time I move my legs (my body’s electrolyte balance finally gets bad enough to create symptoms that require intervention). I am probably damaging my kidneys at this point, especially if you consider the medication load that they deal with.

Since I’m finally acquiring health insurance, I can entertain surgical procedures, and will be exploring interstim (though only half-heartedly, because everything else I’ve done that makes me “hold it” puts me into retention almost immediately), and more likely, either bladder augmentation or removal. These are seriously drastic measures, and once again, when I look at THEM, I end up, in a very real, and possibly logical way, once again considering…

… is it so bad to only live on fruits and vegetables if it gets rid of my pain, somehow miraculously regrows my bladder to its original size (it is currently less than 1/4 the size of a normal woman’s) and makes me 20 to 30% underweight (look out runway models, here I come!)?

No one should have to have this choice, but it’s okay. I probably would rather have it happen to me – I know I can endure it – than someone else I care about. However, the nearly irresistible temptation to abandon all reason and pursue an unhealthy diet in a quest for hope makes me so afraid for so many other IC patients, because desperation will make you try just about anything. How else do you think all those bogus cure people stay in business?

Another Day

Posted in Uncategorized by LJ Johnson on April 19, 2010

When reading another’s blog I read about the “profile” of the typical blogger – usually female, neurotic…

The writer of the blog, of course, immediately said they didn’t fit the profile because they were doing theirs as an actual educational/informative blog, not for attention. In the end, though, I think all of us want some sort of acknowledgement in the world. In fact, in today’s very isolated but crowded existence, I think that many are lonely. It used to be, even 30 years ago, that people knew their neighbors, and regular picnics, card nights and similar things kept a circle of friends close. Today’s acquaintances are much more a nodding awareness than true friendship in so many circumstances. Let’s face it – real friendship takes time, and most of us have too many other things in our world to invest that kind of time in someone that we don’t live with. Between the kids’ activities, time for our spouse, activities in the upkeep of our home (gardening, yard work) and possibly our faith community, getting to know your neighbor is just not on your Blackberry.

My blog, actually, is because I want somewhere to say when I’m in pain, or say when I’m frustrated angry, disappointed, without having it affect the people that I try to wear my “game face” for. Is that neurotic? Maybe. I’m not writing it anywhere that I have an established network that might read it, though, and since I’m called “just another wordpress blog,” I’m expecting that I’ll get very little attention.

Today is a higher than normal pain day. Not sure if it’s completing all the church activities and travel, something I ate, or the increasing pollen count now that the rains ended a few days earlier. I’ll do an instill later and hope that it helps. If it does, it doesn’t last. Sometimes I consider abandoning all treatment, but every thing I quit ends up making it obvious that it was reducing my symptoms a little. I wish that there was something that wasn’t, and that this disease was more predictable and easier to treat. For those of us who are used to sucking it up, the insinuation that most of the pain is because of our bad reactions to it, and not because of pain itself immediately begs the question, “When did I suddenly lose my self-control and pain tolerance if that is an accurate statement?”

I used to LOVE my “toughness.” In high school I walked around with a broken hand for four days before my father saw it (he worked swing shifts and often we missed each other) and got upset and insisted my step-mother take me to a doctor for an examination. Except when it got hit, it didn’t bother me too much. When it got hit it wasn’t even the pain that was the issue, it was the flashes of stars that temporarily blinded me. Years later I tore a ligament in my ankle and broke the heel bone. When I finally found a specialist who diagnosed the issue three months later, she scheduled surgery. While waiting for surgery my toddler ran out into the road and I ran after him. The injured ankle gave way and the bottom of the fibula broke off. I felt it; I heard it. However, I knew there was surgery scheduled in two weeks and the fibula is not weight bearing, so I didn’t bother going to a doctor about it. I figured the surgeon could make sure it was aligned during the surgery and it could heal back correctly when I was recovering from the surgery. The doctor was rather surprised to find an additional break that had not been present on MRI or earlier x-rays, and a little confused about why I never bothered to find treatment for it after it was originally injured.

When I read studies where it is insinuated that most of the issue of IC is STILL “in your head,” and then a paragraph later states, “we are not suggesting the illness is completely psychological” I wonder if the last part is written for a type of political correctness, and the researcher is viewing the illness only through their own lens, and proving why their treatment protocol would be a better cure than others available. I then further apply my own knowledge of CBT to how I’m living within this disease, and wonder again what I could improve, and what strategies I will use to improve things that need it.

I end up being frustrated and a little insulted, because I somehow read “IC patient” as “me,” and when I read that if I’m in pain that limits my functionality I am catastrophizing (nothing can fix my pain, I will be in pain forever – in the end, suggesting that what I endure is the absolute worst and end of all happiness), NOT that my pain could actually be so severe that it turns me white as a sheet and puts me in a cold sweat. Truly, on my worst days, I LOOK for the good. I look for the sun shining, the three (what in the world happened to the rest?) blossoms on my peach trees, the dandelions and how strong and healthy my peonies are and the promise in their growing buds. I look at my loving, supportive and encouraging husband, and my sweet and funny son. I thank God for the companionship and personality of my various pets, and most of all, for the knowledge that my life is NOT just my IC. It limits a lot of things I used to take joy in, but it doesn’t have to limit my joy, nor can it steal my hope.

Sometimes I wish I could write a psychologist researching this illness and ask them to know ME, but then cringe, aware that the uniqueness of my personality traits would be boiled down to a few statistics, and the defense that I argue on my behalf would be discarded as “uncooperative patient.” My belief that I already understand how to manage my moods, reactions and behaviors and that I have an understanding of behavior modification and am doing my best would be challenged as an unwillingness to face my failures and truly change to overcome the illness that I deal with daily. My argument that at times I turn white as a sheet and end up sweating profusely anytime I’m up more than 20 minutes on a bad day could be written off to catastrophizing unless I brought along a witness who assured them it was true. Hmm… wonder if they would then entertain a diagnosis of folle aux deux?

I think psychology frightens me most because it allows no room for explanation – the things that we say are out of our control are labeled “unconscious desires” that we manifest. There are no accidents. Even spilling a glass of water at dinner is an obvious attempt to shame or humiliate someone else while we ourselves were unaware that we even had any ill feeling towards them. Psychology explains away all human freedom and choice, and in the end, that scares me more than even interstitial cystitis.


Posted in Uncategorized by LJ Johnson on April 14, 2010

You know, I will honestly admit that when it was suggested that IC might be the source of my problems I went out and researched it on the internet. When I was finished, I said, “I’d rather have cancer” (I was sick enough that we were worried that it might be what was wrong). At least with cancer if they don’t cure you, you get to die. At this point I’m not necessarily advocating that point of view, but I am still not ashamed of it.

Yesterday, though, was harder than my diagnosis day, to be honest. I got a text message from my sister, who has been dealing with increased frequency, severe pelvic pain and already has a history of endometriosis and IBS. “No infection, sucks to be me.”

We are just over a year apart (14 months), and my diagnosis was 11 months ago. It has been suggested that interstitial cystitis is not a disease, but a spectrum of diseases that includes one which is autoimmune in nature and genetic. My sister’s symptoms and the fact that infection has now been excluded, suggests that she, too, has interstitial cystitis, and that ours most likely is genetic.

I know it is irrational to feel guilty. I didn’t GIVE her IC, I know this. I still do, though, just the whole thing about being first to be diagnosed makes me kind of FEEL like I did. Further, my fear about some of my son’s strange bathroom behaviors (I’m assured they are just normal – boys will not pay attention to the early urges and then REALLY have to go), and the worry that this is possibly something that he might deal with in his future.

I cried. I didn’t cry after my own diagnosis, even though I knew at that point it was incurable and had very few treatments. It was just something to address and move on. Somehow it’s harder to picture her enduring this than me. Not sure why. I guess because I know my abilities, my resolve and my strengths. In a very real way, I don’t know hers. She is very reserved, and never out-going. I don’t know how she can or will endure this alone, and don’t trust her to reach out to the greater IC community, most of whom are always willing to encourage and help. It will be the hardest thing for me – getting her to be willing to share her experience with others who are going through the same thing, so she can learn that it is “normal,” in its own way. A new normal. She needs to know this because it reduces the fear and the anxiety. Finding others going through the same thing helps.

At least she’ll have me. I bought her a membership to the ICA, and also purchased the introduction to disability packet and the personalized disability packet, so she can be prepared to apply for disability once the diagnosis is confirmed. Even if she finds a treatment that she responds to, the most hopeful IC specialists say that it takes two years for someone to reclaim their life after diagnosis. That still assures that disability is necessary and helpful.

What a journey. A new road, for certain.

I’m a new old-hand at this…

Posted in Uncategorized by LJ Johnson on April 13, 2010

I used to have a blog ages ago on another network, but haven’t really touched it in four or five years now. Blogging seems to have come a long ways since then. Another caveat – I’ve been too lazy to learn much HTML. Not sure why. It just hasn’t caught my interest.

The muse is whispering. Sometimes I close my eyes and listen to the whispers, these voices in the dark that are not my own. Only if you’ve lived through a draft or two of a novel can you understand what I mean without worrying about whether or not to break out the anti-psychotics. I read once years ago that Nathaniel Hawthorne said the voices of the Scarlet Letter would not let him ALONE until he finished. I have yet to have any that are that insistent. I can only wish, I guess?

I have IC friends in my named life, people who have connected with me on Facebook. If you happened upon this blog with Google, set up an account on Facebook and look for IC groups. It won’t take long until other IC patients will connect with you, and one of the BEST parts of facing IC with “buddies” is all the things that “aren’t normal” suddenly are. When there is someone who is dealing with the same things alongside of you, the changes in your life seem neither so traumatic nor other-worldly. It just is, and you move on. I don’t think I would have gotten this far without mine.

I’m nameless here because I want some place where I can be brutally honest and not worry that it will haunt me. I know that that, in and of itself, assures you of my regular dishonesty. Sadly, most civilized people have a life that is papered in white-lies. How are you today? Do any of us ever ask that question with the open expectation of the real answer?

Sometimes I amuse myself by imagining one day writing a screenplay about life with IC. I would open it with a woman doing an at-home instill (somewhat discreetly), but making it obvious that she sterilizes her own cup (cheaper than a dollar an instill to buy pre-sterilized), measures and mixes her own liquid medications, then self-caths and instills that mixture directly into her bladder. Why? Because it would immediately make obvious the very drastic difference between her life and “normal.” Something that no one would ever THINK of doing you end up begging a urologist to LET you do, so you can afford to do it more often, as you seek to numb the screaming nerve endings in an organ you never really mentioned or thought much about before diagnosis.

As much as those of us who have interstitial cystitis work to raise awareness of this disease, which actually has a similar epidemiology to Type I Diabetes, it is easy to see why it ISN’T well-known. We don’t DISCUSS stuff that happens in the bathroom. Heck – how many years have some of you watched television? In that time, how often have you seen a television character use the bathroom (okay, except House, let’s not go there)? Bathroom behavior is taboo and not discussed. When you suddenly have a disease that puts you there at least a quarter of every day, the LAST thing you’re going to do is shout it from the roof tops (for one, once you got up there you’d have to go to the bathroom again, anyhow).

I don’t know. There’s just this hope that maybe if I could find a way to portray our lives, the brief moments that we hold on to normal for dear life before it gets interrupted again, and how hard we work and struggle to make the time for well, cooking, spending time with our families; the internal debate with every medication we add, especially for pain management; or the struggle to maintain intimacy with our spouses when the very act can sometimes increase our symptoms for days afterward. I would love to one day find a way to make what we live real without making it tragic. There is nothing tragic about it, because in the end…

… we are more than IC.