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.