IC Journey

Fancy Dancer

Posted in Uncategorized by LJ Johnson on May 24, 2014

Fancy Dancer

It seems like every thing we do that is supposed to help someone out ends up costing us dearly. The colt has developed joint ill, which is septicemia that has attacked and settled into joints. We’ve had to change his antibiotic regimen because the original doses weren’t working. Constant anxiety now as we worry about whether or not the stress of more frequent injections and/or the side effects of the treatment will make him sicker rather than well.


My Feeble Attempt to Prevent a Non-Dog Related Injustice

Posted in Uncategorized by LJ Johnson on May 17, 2014

Please read this and share it! Someone help this hard-working kid get a foothold on a real future.

Adventures at Run A Muck Ranch

Sorry, not so much as a dog pic to be posted here.  This has nothing to do with dogs.

As you know, my day job is as a  landscape maintenance worker, where I am my only full time employee.

There are times, however, when I need additional help, and that is how I met E-.

E-‘s father has been working with me, on a very part time basis since E- was a wee one.  I remember E- coming to work with his dad, because there was no one to watch him, and he would quietly amuse himself in his dad’s vehicle.  Rarely did I ever hear a peep out of the kid.  Even when he did peep, it was at break times, and he was with his dad.

E- has grown up a little.  He will be graduating from High School on May 21.  E- is a very good student…

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Sleep Deprived Ramblings – Help Me Name My Horse

Posted in Uncategorized by LJ Johnson on May 16, 2014



Lack of sleep clouds our judgment, or maybe our inhibitions.  I’m not sure which.  There’s this little voice saying to me, “Do not be doing this.  Do not blog with so little sleep.  You will not make sense; you might even be whiny.  This is never a good idea.”

Here I am anyhow.  

Last night I tried to write a blog with a little amusement about how hard it is to name a horse.  Now, you wouldn’t think it is hard to name a horse.  If you have pets, you have probably named them, or at least shared naming them (not so with some people who only adopt).  I am not sure what it is about a horse that makes them “feel” different.  

I admit that with all of my pets I try to “know them” first.  The exception of the current crew is Hank, who we were planning to actually just find a home for – he was a stray dumped at our church.  We already had one house dog and two house cats.  We did not need another dog.  You know how it is, though, with boys and dogs.  He was a yellow terrier mix and named after Hank the Cow Dog.  Hank has been here for two years this coming December.  

Back to the horse.  He is a month old today, and he has been mine for three weeks. His dam’s name is Midnight, and his sire’s name is Baheem.  His grandsire is Thee Desperado on his sire’s side.  He is a cute little guy and his mother doesn’t like nursing her foals, so he has already been lucky to survive birth, being rejected, and then developing joint-ill, which is septic arthritis developed as a complication from an infection of the umbilicus.  Between milk replacer and vet appointments, the colt called a “miracle” by his breeder is already getting to be a pricey little guy.  

And he is sweet, and funny, and smart.  Just like most Arabians (I own his older half-brother – same sire, and he likes to grab hold of my hair from behind and see how long it takes me to notice, and I’ve seen him attempt to sneak up on a cat to push it into a water tank).  

I think, with horses, you end up with this kind of respect for them.  You don’t want to pick a name that will somehow disrespect their history or the future working relationship you will have together.  I didn’t have to name my first horse – he was already named by the breeder.  This is my first chance to name a horse, and I want so much to do it right, you know?  

Midnight’s Fiery Blaze has been suggested.  I countered with Midnight’s Blazing Star (he has a star, though part of me thinks naming a horse with a star Star is kind of too predictable).  Often Arabians are named Arabian names, but I don’t know if I want that.  I have considered Celtic names, looked at baby name books…  

It’s getting old calling him “Baby,” and one day, well, he’ll grow out of that.  

You’re welcome to suggest names below!

One of My Best Friends Died Yesterday

Posted in Uncategorized by LJ Johnson on May 9, 2014

It didn’t start out that way – that we would end up being those kinds of friends.  It started out just me being me, and he and his wife being them.  You know, when you’re sick you don’t get out much, and usually, if you do, it’s to go to a restaurant because it just seems easier, if it’s close and they cook for you.  Then you end up, if it is a small, owner-run restaurant, talking and visiting every time, and something sometimes just happens. You spend a half hour or so two or three times a month with people, and they get to know you, and you get to know them.  

With us, well, it started with giving them snapshots of their kids.  For some reason, his wife really appreciated that.  It didn’t seem like such a big deal to me.  Several years went by, and then last year I had knee surgery.  It meant that K went almost every day to that restaurant for dinner (we were on a diet – if you do stir-fried chicken or beef with veggies, it’s pretty healthy).  While I was recovering, my friend (okay, they’re both my good friends) went fishing and cooked me a special meal to help me heal faster.  Goodness knows… my friends’ caring definitely encouraged my heart.  Other times when I was flared so bad that getting to the restaurant was just not happening, and I would send K instead of going with my family, my friends would ask where I was, and when they found out that I was in so much pain that it was making me physically ill, they would send special soup – no charge, of course, just like the special fish dinner.

That was last spring.  By late summer my friend kept having a lot of back pain, and assumed that he pulled something moving heavy cooking pots and stock around.  He also started losing weight, and kept joking with us about how much healthier he was getting.  

He wasn’t getting healthier.  Cancer that he had had treated several years earlier when I hadn’t gotten to know them yet had recurred.  He wasn’t keeping track of it – he couldn’t afford to self-insure in a rural, small-town Chinese restaurant.  By the time he got sick enough to end up in a hospital, it was already stage IV and in his liver and bones.  That was August.  

Tonight, as I was reading a text thread where I was participating in a debate – somehow, my next response had to be about personal growth as a Christian.  I won’t say that I have had a hard life – but it hasn’t been easy.  It has always, always, been blessed, though.  And I realized that my friend who cannot fathom why her husband would be gone at the age of 31 – she and her husband, the past few months, have sometimes, in a very lost, and with a voice so empty with its hope for an answer, have asked me, “Why?” – I realized that I did know the answer, and if I am blessed, I might be able to help her to live through it.

I couldn’t tell them an answer when they asked, though.  In part, because the why comes as we go through the journey, and sometimes we don’t see it until years later.  Also, because when you are hurting that much, sometimes any answer sounds like it is dismissing your hurt – instead of making you feel comforted, it makes you almost feel unheard.  

I realized tonight, though, as I was answering a question and talking about spiritual growth, that if God blesses me, I can be with my friend as she goes through her “why” now.  It will be so hard. English is not her best language yet, she has no education beyond high school and the restaurant was sold when her husband got sick.  She has two children who are just barely beginning school.  It is going to be a long journey.  She counts me as her best friend, and I am chronically ill and cannot, ever, get through an entire week of being a good friend.  She can have me for a few hours a week, tops, if I get to have at least three days off between visits.  This hurts me.  It means I am not a liar when I assure our government that I cannot work, but… it also means that I have to choose who I am to whom – whether my children get my good time, or if I tell them that this week they have to share me with someone who might need me more (since there is only one left at home and he will be sixteen, and a good son, it is easier now).

I got through today.  A lot of it was with her.  Tomorrow is the visitation and funeral, and I will get through them.  I am praying to God for wisdom and stamina, because I know that I will need a lot of both, and He is the only way through anything (this is, ironically, a strange blessing of this illness – when it is “I can do all things through Him who gives me strength,” there is no way I can accomplish anything on my own; every thing I accomplish is another evidence that God is good).  

I promised him just about two weeks ago that it would be okay, because I would take care of his wife.  Now I rely on God to be able to honor that promise.  

One of my best friends died yesterday.

In the Pink

Posted in Uncategorized by LJ Johnson on May 9, 2014

In the Pink

In spring the beginning of a continually changing floral offering begins. We are blessed not only with blossoms on trees, bushes and plants, but flying, brightly colored insects and birds that flutter by.

Anyone Want to Chime In On This?

Posted in Church Life by LJ Johnson on April 21, 2014

Totally off the topic of coping with chronic illness.  Well, mostly.  In the real world, my life isn’t just about chronic illness.  It might touch every part of my life, but it isn’t my life.

I am an active Christian in a very small church, and I do a lot with music ministry, and will start teaching Sunday school in May.  Our church has been struggling for a long time now as it attempts to modernize.  It is, unfortunately, a church that tends to be a bit literal in its Scripture application in some areas, so many of the older people feel quite upset when you change things, like the order of the service, or what kind of music is sung, or if, heaven forbid, a woman might offer a prayer audibly in public.

We have been working towards change though, and towards the freedom that we are called to.  Today a very creative, beautiful service – one that you can ponder over and find meaning from throughout the coming week – was performed by two families who worked very hard together to put it together.  Probably about five or six times the amount of time of the service was spent planning everything, choosing music, choosing what would be said, etc.

However, even though I, as the main music minister, often lead a contemporary praise and worship “interlude” (our compromise – the traditionalists get the hymns, etc., during “church” proper, but in the time between services, anyone interested in “newer” music gets to join me singing contemporary praise and worship songs that are put up on a projector screen), for some reason when other people, along with teenagers, did the same thing without praise tracks or instruments (we are a small congregation, and I have worked with the youth and we have a kind of praise team together, but without my keyboard they kind of fall apart, and I injured my wrist in December and just had wrist surgery, so no actual instrumental, singing praise team for now), it caused all kinds of havoc.

Not that they did anything wrong – it was all RIGHT.

No, for some reason, the same music, performed by different people, was suddenly the most horrible thing that ever could happen in a church!

I’m completely unable to understand this.  What an adult female can do another adult female and two teens cannot?  Or was it that they used the regular recordings because they were uncomfortable with other forms of music (praise tracks or attempting to play instruments and sing at the same time)?  Or that one of the songs was a recording from a concert instead of studio?

I left the church this Sunday feeling so much joy and freedom!  Then the phone calls came (I am in charge of scheduling music).  I end up confused and a little sad by the people who felt so compelled to control what happened that they spent so much time finding fault that they never even heard the message.

He is risen!  He has conquered death, sin and the grave!  We are free, covered in the enormous sacrifice He made.

For some reason, I don’t think He would have been the least bit upset to see us clapping in celebration, or raising our hands and worshiping with our whole selves.  I think, if anything, those worshipers probably made Him smile.  He might have even clapped, just a bit, with them.

Spring Always Comes. Sometimes It Just Takes Its Sweet Time.

Posted in Uncategorized by LJ Johnson on April 7, 2014


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.

Stuck? Or Just Not Getting There as Fast as You Would Like?

Posted in Uncategorized by LJ Johnson on March 17, 2014



Life is complex in the best of circumstances.  I can’t think of a single life style that wouldn’t be (though childhood, now that I am an adult, was much easier – no wonder grown-ups would laugh at me when I would cry in frustration, “I wish I were an adult!  At least then I could make all the rules!”

When you develop a chronic illness, the adaptation process is not immediate, nor is it static – you don’t just one day “accept it.”  Part of this, in many cases, is because the illness itself is usually not the same day to day, and many are progressive.  Often, instead of treading water, a chronically ill person feels like they are in quicksand.  

I think one of the hardest critics most of us deal with are ourselves.  Last night while talking to a parent about my son and his future possible soloing in church, I said I needed to spend time giving him some voice lessons to overcome issues with singing too forcedly, bad breath control, etc.  She immediately said, “Oh my goodness!  I can’t imagine what you think when I sing up there!” Oops!  I realized immediately, of course, that I hold no judgments about other singers.  I was concerned about my son’s performance because of an unconscious worry about how it might reflect on ME.  Worse, it made me remember how much my parents contributed to my own performance anxiety because of their constant nit-picking about possibly holding a measure too long here, going flat there, etc.  They wanted me to do my best, and at that moment, I was.

We need to learn that sometimes staying just as we are – not improving any more at that moment – is okay.  Sometimes in those quiet times, we are growing and changing, and working towards a new understanding.  Like the frozen winter where spring waits under the snow, there are always new changes and rebirth awaiting, if we just allow ourselves some quiet time to reflect and grow.  

Quit being so hard on yourself…  me too.  

Do You Know Who You Are?

Posted in Uncategorized by LJ Johnson on March 3, 2014

I have had the joy or misfortune to be raised by someone who was getting their master’s degree in psychology while I was in my adolescence. This person readily accepted theory as fact, and always put it into practice. Every error or mistake was done “on purpose, just an act of your unconscious.” In a very real way, this created a woman who is never sure of who she really is. Even though I no longer am as convinced that I would be unintentionally hurtful to another person and actually have “meant” it (while being unaware that I had any hard feelings or intention to do so), when it comes to more complex things, like how I cope with and react to chronic pain and illness, it is a lot more confusing for me.

The other day I spent about four hours with a friend working on a house design. My bladder was being its lovely self, and lots of talking somehow means sipping rather continually on a beverage, so I was excusing myself three or four times an hour for bathroom breaks – my version of normal. During that four hours I drank about ten ounces of fluid. Usually when I know I will be out of my house I don’t drink anything anymore. It is how I accommodate functioning away from home. That being said, I don’t visit with people much anymore, just because of that – when you can’t hold a decent conversation because of your own interruptions, it is just easier to avoid them entirely.

I still read occupational and psychological therapy blogs and read that I am supposed to learn to accept my pain and cope with it, preferably without medication. I must admit every time I read this I feel so much shame! I was at a point where my pain levels made me physically ill (flares still will – I will sweat in a diamond shape on my face, change color, steam – I will steam over the windows in my car), and an observant person will see my distress, even if I am doing my best to just carry on. I often wonder if I gave up and took the easy way out at some point. Was pain medication worth it?

Then I read another article and all the self-doubt begins. One of the reasons is because I cannot be sure where my limit is. More than once, usually when frustrated or overbooked, I have pushed too hard and exceeded it. When I do that, I end up in a flare that makes me sick enough to put me in bed for two or three days. I try very hard to pace myself instead, and have my “always” activites, my “good day” activities, and even schedule how my always activities fall, mindful of recovery days if there is a lot of “always” that seem to come all at once (I am the mother of a teenager, and I do try to be there for things he does).

I wish that I were better at this. I am weighing counseling, wondering if they might help me better discern how to push myself and improve things, or at least reassure me that my self-awareness and self-analysis have insured that I am being all I can be, and accomplishing all I can with what I have.

One word about what I do accomplish: many others who are connected to me who share my illness believe I accomplish plenty. It is encouraging to me to have them share stories how my choices (I have some livestock that I take care of – they, and caring for my child, are the “must always do” list) have inspired them to choose their own “always have to” list, and have moved some from staying in bed to choosing to move. It is shared in the end – we inspire each other, and I am grateful for that.

If you are where I am, don’t lose hope. In the end, I think that is how we keep going and growing. If we are afraid to ask ourselves the hard questions, we don’t have much reason to move beyond our safe places.