Don’t Go Chasing Waterfalls
Over the next week, I’m going to tell my story. Some things that I’ll share are extremely personal and private. You might rightly wonder why I’d share some of the most private medical information about myself. I will not lie — some of the things I’m going to share this week are some extremely embarrassing symptoms of my disorder. My goal in sharing these private things — from urological problems to mental illness — is to help others. Betty Ford was diagnosed with breast cancer while her husband was President of the United States; a public discussion about breast cancer was taboo in that era, but that did not keep the outspoken First Lady from sharing her story and encouraging women to undergo mammography. Again, when Mrs. Ford was diagnosed with alcoholism, she went public in an effort to help others. I’m not First Lady of the United States (and I have absolutely no desire to become the First Lady, trust me on that one), but I believe shedding light on some of my medical issues might help others. I might help others have discussions with physicians that highly embarrass them, lead to exams they would rather not have, and tests which prove painful and yield no concrete results. Leave your embarrassment at the door, because I have some medical issues that I need to share — medical issues that you may have suffered with for years in embarrassment. Let’s be embarrassed no more, but let me urge you to get the help you need. I want to show that no matter the difficulty, God is still good. Regardless of the difficulty, God is still love. Regardless of the difficulty, God is still our healer.
Today, I’m going to talk about the first symptom I encountered: an overactive bladder. I had a physical shortly before I married, and the doctor ordered a blood test. When I saw him for a follow-up appointment, he said that my kidneys were doing a fine job. I told Mom what he had said, and she about laughed her head off. Why? Starting in middle school, I started wetting the bed some nights and having very little bladder control during the day. Dad took me to the doctor, the doctor prescribed a fairly new medication, and from 1987 until 1999 I was symptom free.
But, in 1999, my family traveled to Mamaw’s house for Thanksgiving. Tammy and I, as I recall, were sleeping in Mamaw’s bedroom, and when I woke up as I was urinating; I thought I was simply having a dream that I was in the bathroom, and Tammy and I had a good laugh over it. Well, it wasn’t a dream. My bladder had stopped functioning properly, and all these years later, my bladder still does not work quite right.
For many years bladder control was a thorn in my flesh: I needed to know the location of the restrooms in every store, I got up several times a night to empty my bladder (if I woke up at all), I frequently had to ask to use the restroom when I was making “pastoral” visits, and I’d wet myself if I couldn’t get to the restroom quickly enough (I actually had to cut a sermon short and walk out during the invitation hymn after I had lost all that my bladder had been holding). Tammy, getting frustrated with the situation, made an appointment for me and accompanied me to the exam room to make sure I told everything.
I saw one of Dr. Paul McLaughlin’s PAs. Hal performed a urological exam, but he found nothing out of the ordinary. The lab found some bacteria in my urine, but not a thing that could cause my symptoms. The only thing the PA knew to do was to refer me to Dr. Brent Terrell, the urologist whose office was directly across the hall from the GP’s office.
Dr. Terrell (urologist #4 — one of the problems of moving as a preacher is getting new doctors, especially when you have a chronic condition such as mine) saw me several times before I saw him for the incontinence. When he saw me for the first time concerning my incontinence, he examined me, and he, like the PA earlier, found nothing out of the ordinary. He performed a few tests when my exams were normal: a cystoscopy (inserting a tube with a camera into the bladder via the urethra), a urodynamic study (inserting a catheter into the bladder and filling the bladder with water so that the physician can see the shape, size, and function of the bladder), and intravenous urography (injecting dye into the bloodstream while x-rays are taken to see if there are kidney stones or any other obstructions in the urinary tract). Everything turned out normal.
Dr. Terrell sat down with Tammy and me, and he revealed his suspected diagnosis: multiple sclerosis. He referred me to a neurologist in the Central Baptist Hospital network located in Lexington, Kentucky.
I saw my first neurologist, Dr. David Kelly. I failed my neurological exam (I have never passed one). Some of my tests and exams came back normal and some did not (I’ll talk more about my lengthy journey with neurologists later this week). When all the tests were performed, the neurologist said that he could not diagnosis me with MS because, while some tests were abnormal and pointed toward MS, the MRI showed no lesions on the brain (sometimes lesions take a while to show up on an MRI). Dr. Kelly told me that within 10 years I would have full-blown MS.
While I was facing a challenging bladder, my family moved to work with the church in Alum Creek, West Virginia. Not long after we moved there, we heard of a fabulous urologist (#5), Dr. James Tierney. Dr. Tierney could also find no easy explanation for my problems; therefore, he recommended I undergo surgery to implant an InterStim device. The device is, more or less, a pacemaker, and leads branch out from the pacemaker and are positioned near the sacral nerve; the electrical impulses relax the neurogenic bladder.
After the surgery took place (less than a week before the terrorist attacks of 09/11/01), the device was activated, and my life changed. I could sit through an entire movie at the theater without getting up at least twice to run to the restroom. I could make visits without asking every shut-in every week if I could use his/her bathroom (that gets embarrassing after a while). I could preach without needing to run to the restroom immediately following the Lord’s Supper which immediately preceded my sermon. Dr. Tierney would bring med students in when I had a checkup; once, he brought a room full of students in and said, “Randall (I never could get him to call me Justin), tell these guys what Interstim did for you.” I was more than thrilled to tell them how my life had changed.
Yet, Dr. Laurie Gutmann (neurologist #5) suspected I might have multiple sclerosis (see a common thread?), and she ordered an MRI. You cannot have an MRI when you have a medical device implanted in your back. Alas, the InterStim was removed. My current urologist, Dr. Mark Schmidt (urologist #10), no longer performs InterStim implants, and he says that with a confirmed neurological diagnosis, I am not a candidate to have any urologist implant it.
To the best of my knowledge, I have taken just about every medication for overactive bladder. Some worked for a while, but not a single one could solve my problem long-term. Today, I know where all the restrooms are in the stores I frequent, I know where every rest area is on the way to my and Tammy’s parents, and I’m back to asking often to use the bathroom when I’m visiting in a home. Depend has a new line of underwear on the market; yes, at only 41, I wear adult diapers. I have finally found a discreet way to put them on when I put my underwear on in the locker room (my neurologist has told me that under absolutely no circumstances am I to bathe when I am alone in the house; I am at too high of a risk for falling).
I started seeing urologists before I was 20 because an enlargement of the prostate caused serious pain issues. My current general practitioner and my current urologist believe the pain issues are caused by my neurological condition; therefore, all they can really do is help manage the pain.
My journey has been far from easy, but I have been blessed every step of the way: I have a wife who loves and supports me, I have parents who will listen to my frustration, I have two sons who are willing to help Poppa (as they call me) with anything I need. I have Christians who regularly lift my name before the Father’s throne, and I have some excellent physicians. I prefer to look at God’s blessings rather than Satan’s trials. God is faithful, and our adversary is not. If we will allow Him in our lives, God will walk with us every step of a difficult journey. I know He’ll walk with you, for He has walked with me.