A Story of a Girl and her Bladder after Surviving Rat Lungworm.
My first appointment with the Urology clinic once I was on my own was January 20th, 2014.
That’s 13 months and a day after I was released from the Community Living Center in the Phoenix VA Health Care System following my fight for my life against rat lungworm disease. When asked why it took so long to be seen after having my bladder and colon OBVIOUSLY not functioning correctly, I have to shrug my shoulders and say with a smirk reflecting the hopelessness of being a combat veteran in need of care, “When your health care is free you get what you pay for.”
Each time I visit the VA hospital for treatment, I must drive nearly two hours. Normally I take the shuttle from the clinic in Moab, which is how I got there this time. Sitting alone in the back seat of the small SUV, while an older gentleman drove the 80-year-old veteran in the front seat and myself along the desolate highway to Grand Junction, Colorado, I found silent tears of fear sliding down my cheeks.
31 years old…and not sure how to pee…What if they don’t have an answer?
When we arrived, I went straight to the urology clinic and checked in. I sat down in the waiting room, alone, in the corner. I felt a knot build in my throat and tears welling as I sat, waiting silently to meet the woman who could potentially answer at least one of my questions.
I had a moment of recognizing my acute alone-ness in this battle. I have a sister that says everyone has problems peeing at 30 and has no patience to listen, a cousin that emailed me hatefully on Facebook after reading my updates on this site to help other rat lungworm survivors, “I know you got sick. But you know what .. shut up about it. I am sick EVERY FUCKING DAY.. and no one knows..you know why??? cause i don’t want that kind of pity. I don’t want that.. oh look how great life is that i’m alive bullshit. I take my mother fucking shot and i eat.the.pain. It will never go away and i probably will need a bone marrow transplant, but whatever,“ a step-mother who had been in my life since I was six, who hasn’t called me in nearly a year after my father killed himself and refuses to ask how I’m fairing while she handles her own recovery from trauma and guilt on an island where there’s a deliberate refusal to ever mention or acknowledge the truth. This is after wordlessly sneaking me my father’s ashes stuffed in a hand cooler locked out of the house with EVERY tangible picture or letter I’d EVER sent home from Iraq or Afghanistan without an explanation.
Lastly, my soulmate had just gotten a new job, and couldn’t be there.
I smirked and rolled my eyes at the absurdness of life.
I realized in that moment how much it would truly mean to me to have some answers. I sat, smiling silently through involuntary tears that wouldn’t stop.
Alone and a bit lost, but not quite lonely.
She came in, introduced herself, sat down, and said what I was hoping she’d say, “I read some of your file…” I did a little stationery dance and audibly cheered (normally NOBODY at the VA reads my file before they see me, so my first visit to any specialty clinic is nearly always a waste of time spent mostly with me explaining what happened with Rat Lungworm and the listener sitting befuddled, mouth agape).
After I finished celebrating her diligence, the urologist continued, “What urological symptoms are you experiencing?”
I laughed. Genuinely. Light heartedly, even.
I laughed because I was going to get to explain this for the first time directly to a urologist after waiting over six months for an appointment, and I didn’t know where to begin.
I picked a place and let loose:
I have had to learn my body again piece by piece, signal by signal, but my bladder…confuses me. I get a signal that I have to urinate, not by the genuine feeling in the bladder that I remember as a “normal” girl, but by as a nearly unbearable pressure and gnarly spasms that shoot from my feet to my knees. These spasms make me cry out in pain, contorting my face in all sorts of ways. Urination is a cognitive process for me now. There is nothing involuntary about it. There’s first the urge, a quick trip to the bathroom…then…a spasm. Not a bladder spasm that allows me to pee, but a spasm that takes the urine and hides it back in my body. I have to then focus on completely relaxing all internal parts of my abdomen until I begin to feel the urine approaching again. As it gets close to the outside world, I have to push…HARD. Like a constipated 80-year-old man who ate a 20 OZ rib eye smothered in peanut butter for breakfast. Sometimes that works, and sometimes it spasms back inside again…Oh, and the whole process is absolutely painful. The urine feels like tiny droplets of razor edged, fire. I whimper, wine, and hold myself tightly while the process is underway. Most of the times I keep my eyes closed and hands clasped desperately. I’m out of breath by the time the process is finished… AND.THIS.HAPPENS.EVERY.SINGLE.TIME.I.PEE.”
After a moment of awkward silence, the doctor agreed that testing would be in order. That means more phone calls and appointment, but no immediate answers.
I left the office feeling just as confused, but much more hopeful for some answers…next time….
Stay tuned to find out if there are solutions, permanent damage, or what!And remember….tomorrow’s not guaranteed. Appreciate even your involuntary functions in life!