IC Journey

Has the Pursuit of Healthy Self-Esteem Ruined Excellence?

Posted in Uncategorized by LJ Johnson on April 27, 2010

At first I was so proud of my son’s answers when his step-mother sent various questions about self-esteem. Granted, I knew part of his lack of concern was his boy-ness. Boys are really not all that touchy-feely to start with. When he rated perfection as lowest when given a choice of three things (abilities, appearance or perfection, I believe were the choices) I was very pleased with his values. However, when I looked at it in the greater context, including our continuing challenge regarding his grades, I wondered about it a little more.

In truth, kids are no longer encouraged to be “best,” because only one can be best. They’re told if they ‘tried’ it was good enough. That sounds really nice, but the truth is that a kid who isn’t interested in school work, etc., in any real way, or is easily discouraged when they don’t do well, will put decreasing effort into something they aren’t good at because they never feel good about their accomplishment (they aren’t one of the better ones) so there is no reason to really put too much work into it because when they don’t excel, they are still assured, “It’s okay because you tried. What a good job!”

What a struggle – I was raised by parents who ONLY wanted the best, and the rare times I was given a compliment or told that they loved me I often had to run upstairs because of the tears that would come to my eyes. Every point missed was a condemnation, because I could have done better. It made me miserable, because I never felt loved – there was too much pressure to perform and not enough assurance that I was loved regardless of and not because of accomplishment.

My son is certain he is loved, and that is something that was especially important to me because of my childhood. That being said, I struggle constantly to find anything to encourage his interest in things that are vital for his future success as an adult (education, chores to build good work ethic, saving money instead of spending it, etc.), and usually fail. Somehow the pendulum has to swing back a little bit from the “everyone wins” attitude in our lives. Self-esteem is useless. It is better, instead, to teach our children healthy self-worth. They have intrinsic value in who they ARE, that is true. However, they build their own feelings of confidence and worth every time they succeed at a goal, and goal setting and achievement are necessary for our children to grow up to be healthy, successful and mature adults.


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.

I Said I’d Be Honest

Posted in Uncategorized by LJ Johnson on April 22, 2010

So I will be. I am STILL so tempted by the diet switch, especially with the promised “there is no way you can even eat 1000 calories a day on nothing but greens, all the watermelon you can eat at breakfast and a handful of nuts every third day.” I mean, come on, I’m over 40, have been sick for over a year (so not as active) and am on THREE medications which cause weight gain (and one that causes very frustrating carbohydrate cravings, just for good measure).

What person wouldn’t want to abandon all those evil “poisonous” drugs AND also be guaranteed a diet that will put them at 20% under suggested weight within about six months? Especially when the person pushing it tells you she has enough energy to work 60 hours a week on TOP of her activities promoting her diet ideas, feels better than she has her entire life after having multiple chronic illnesses and has HAD the illness (okay maybe more than one of them) that you have?

I’m even considering trying Elmiron orally, even after I had a bad reaction to it as an instill. I don’t want to – for one, I ended up with an itchy rash, and really suspect that wasn’t a good thing. For another, the side effect profile scares me, especially since, unlike another drug I did ages ago with similar side effects, it doesn’t promise they’ll go away in a few weeks or so (the previous drug that had a hair loss side effect also had the hair grow back in after falling out, even if you continued the drug, though it usually grows back curly), but, rather, that the side effects will go away when you quit the drug.

This is a chronic illness, people. That means “forever,” (though there are cases of people improving enough to slowly reduce the dosages over time) so that means you don’t actually usually get to quit the drug! My best friend, though, a Type I diabetic, when I balked at trying it orally after the bad instill reaction to it said that if it were a pill that made her bald she would do it rather than have diabetes and its resulting complications over time. She said, “Is it so bad to have patches of hair missing (nothing like looking like an animal with mange) if it means the rest of your life is normal again?”

That’s a hard one for me. Isn’t that SAD? You’d think it would be an easy choice. However, my hair is waist-length, never dyed, never permed – no chemicals whatsoever. Further, it is spoiled rotten as hair goes, never blown dry, curled with curling irons, etc. Seriously virgin, shiny, beautiful hair. Do you know how many years it will take to grow in a bald spot to match waist-length hair? Worse, it never got long or stayed long until it did a sudden nine-inch growth spurt during my pregnancy with my son 12 years ago. I have a terrible time getting through the “awkward stage” of growing my hair out, and have always wanted to have it this way. Spent almost 25 years of my life almost getting it long, then cutting it all back off to a page boy or shorter. Worse, it’s this stubborn hair that doesn’t hold a curl or style, so short doesn’t really work well for it. I end up looking like a shaggy dog most the time.

I actually get rather angry at the makers of Elmiron. The original studies for FDA approval demonstrated a success rate that was around 10% higher than placebo – hardly a really glowing recommendation. Since approval, the FDA has actually sent them letters telling them to correct some of their misleading marketing statements. Their newest one is NOT a lie, however it relies on open label rather than double-blind studies and FURTHER also relies on a questionnaire to IC patients. The new marketing literature says “more than 50% of patients who tried Elmiron experienced relief” (this is from an open label study, so people who would be helped by placebo get to be included in the “helped” count -further, they didn’t require an absence of symptoms, just any improvement of any of them), and that “most IC patients say they would recommend another IC patient try Elmiron.” Of COURSE we would. We know that every single treatment out there only helps between 30 and 40% of IC patients on average, and what doesn’t work for us won’t necessarily not work for someone else! The LAST thing we would do would be suggest that another IC patient NOT try something, especially if there is ANY hope of it improving their lives!

Yeah, I know they have to pay for their research, drug marketing and launch materials (not to mention the money for their drug reps, manufacturers, blah blah blah), SOMEHOW, but that, and the fact that, since it doesn’t help everyone they are now doing new trials and/or recommending two and three times the original studied amount for longer periods, instructing doctors to double and triple the dosage and encourage the patient to try it for up to a year in case they don’t respond to it more quickly, assuring that that patient’s body might just “need a little more time.”

And why do doctors even fall for that in the first place??? Granted, the anesthesiology resident who was spending a day visiting at my PCP’s office the other day said something that really put that into place for me: “Urologists get frustrated with IC patients because it is hard to have a patient that never gets well.” I never thought about it that way – talk about lack of job satisfaction. At the same time, as a patient, I don’t care that it takes us ten or fifteen tries to find something that works, just so the doctor remains open-minded enough to try something else instead of shrugging their shoulders and saying, “Well that’s all I got.”

So now I’m weighing – what is better – trying a drug I already had a reaction with when I didn’t even ingest it? (the urologist is assuring me that just because I had itching, inflammation and burning after it contacting my skin doesn’t mean I would have those problems after I swallow it) or do I try a diet which, on its surface, looks just as (or more dangerous) than giving that drug another try?

Why is the diet idea just not quite as scary?

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.

Remember – normal is just the average of everyone else’s flaws

Posted in Uncategorized by LJ Johnson on April 11, 2010

When confronted with the word chronic, even when assured there are “good days and bad days,” it is a LONG journey to get to a point where you have that to any point of balance or organization. If you are someone who struggles as a people-pleaser, like me, it is even worse. The LAST person on your priority list is always you. Even when you know that you are hurting yourself to “do unto others,” you do it anyhow until the last few dregs of energy and stamina are left. Worse, for some reason, when you look up, instead of getting the required rest and empathy, you are met with the nearly impossible expectations you’ve created.

I’m not “there” yet, if you can’t tell by my first paragraph. For one, every time I have a good day I wonder if I should be pushing harder because I obviously haven’t hit my “limit” yet. Additionally, since the last thing I want is to have my illness effect my family, I always choose to make sure that things they are used to – laundry being finished, breakfast cooked and served to them, the house staying clean – that all those things are done first. My needs are often ignored or postponed in hopes of meeting my family’s.

Since interstitial cystitis, especially in its later stages, includes frustrating frequency (if I’m hydrated I’m in the bathroom about forty times a day), you end up choosing to either stay home all the time, or avoid fluids to go out (if I’ve avoided fluids long enough my frequency goes down to only twice an hour – that requires no blood pressure medication and only enough fluids to swallow pain medication). I’ve learned, with experience, that if you limit your fluid intake to a pint or less of water a day you have three days until every movement makes your legs charlie horse. I’ve been told no one should know that. With IC, well, you get creative.

When I was first diagnosed, and realized that I might NEVER get back to what everyone else considers normal (voiding 8 times or less per day, sleeping through the night without having to go, no pain), I announced I was on the journey to find my “new normal,” hoping that I would learn a balance that at least gave me quality time with my family and enough well-managed days to not feel like a shut-in. I’m accomplishing it, but not the right way, and now I struggle with the question of what I should really choose: a normal that takes care of me and reduces the quality of life for the rest of my family, or a mind-set which learns not to resent my family when they seem unaware of the toll it takes on my body when they want to spend the day fishing at the lake, or running around shopping or going to a special event.

Today I resented them SO much. I tried to beg off, but it was quietly ignored, and I ended up spending six hours drinking less than a half cup of water and eating nothing (the only thing that was there that was “safe” for me was the hamburgers if I skipped the bun) while I watched everyone drinking can after can of soda, beer, and bottles of water, eating hamburgers, hot dogs, s’mores, flavored potato chips and coleslaw. I know that the family needed the time together (extended family) and that my husband loves every time he gets to spend with his grown sons. I also know that allergy season had increased my pain significantly, I was dying of thirst and nowhere near adequate restroom facilities and the toilet paper that was in what restroom facilities there were happened to be filled with a wasp’s nest.

I spent much of the day honestly asking, “What about what I need?” I was blessed to spend some time later this evening with my son, talking about how much I love him, and hearing him tell me he knows it because of all I do for them. It made it kind of worth it. I honestly never liked fishing in the first place, though… and I don’t know if I want to ever go again at this point.

Perhaps my new normal should include access to restrooms with adequate toilet paper, adequate hydration when in the sun for extended periods, and the understanding of my family when I say, “I’d really rather not,” that I am NOT a mandatory participant?

In the end, normal is an average, not an absolute.