Originally Posted Friday, November 21, 2008
Last Thursday, my husband and I were supposed to leave for a trip to see my sister-in-law play in her college soccer tournament. But things didn't work out that way. After having surgery the previous Friday to remove a large kidney stone, my recovery was not going well. In fact, early Thursday morning, I went to my urologist to have the stint removed from my bladder. The doctor and assisting nurse both assured me that I would feel SO much better after it was out. Less than an hour later, I was on my way to the nearest emergency room, screaming and crying from horrible lower back pain. My husband called the urologist, who explained that "some people" experience these spasms of the ureter after having a stint removed, and that there was nothing that could be done but to hurry to the ER for some serious drugs to control the pain.
SIX doses of pain medicine later, I was resting somewhat comfortably, waiting for the test results. The doctor came by to inform me that I was, in fact, experiencing spasms as a result of the stint being removed. He said that the spasms, once under control, were "very unlikely" to happen again. After most of the day in the doctor's office and ER, I was sent home with a prescription for some stronger pain medicine, "just in case." Jon had planned to go ahead on the trip without me, leaving me home with my younger brother to help out. But he decided to postpone the trip until he was sure things were stable with my health.
The next morning on awakening, I began experiencing these horrendous spasms once again. But with the combination of anti-inflammatories and the strong narcotics I was given, it appeared I had the situation under control. So he left for the trip. Less than two days later, I developed a high fever and was having severe difficulty passing urine. I sent my brother out to the drug store in town to get something called Uristat, which relieves the bladder spasms and allows you to pass urine with the added bonus of dyeing all bodily fluids a bright orange color...tears, sweat, urine, etc. We live in a very rural area, so a trip to the nearest drug store is quite a drive. When he returned with the medicine, I quickly discovered that the pharmacist, who barely speaks English, had led him to believe that a generic brand of a cranberry supplement contained the same ingredients as the Uristat. And now the pharmacy was closed...and the ONLY one in town.
I called my doctor as my fever was climbing, wondering if I needed to go to the ER. He said to come in if it went above 102. So we BOTH got into the car and drove the 20 minutes to the nearest Walmart. I insisted on going along, wanting to be certain we got the correct medicine. When we parked the car and I began to get out, I realized my legs were feeling quite "rubbery," an indicator that a cataplexy attack was imminent. When we entered the store, I barely made it inside to collapse onto the nearest bench while my brother went in search of a power chair. Although the store was nearly empty at this time of night, there didn't seem to be any chairs available, and when we asked the "greeter," she casually suggested we go all the way down to the other end of the store and check that entrance for chairs. I was in my pajamas, socks, flip-flops, and a hoodie pulled over my head, and I'm sure it was clear that I was not feeling well. Leaving me on the bench, my brother sprinted to the other entrance, returning with the coveted power chair.
We began searching the pharmacy area for the Uristat but could not find it. There were no employees in sight to ask for assistance, so we continued down every aisle in a desperate search. Finally, we found another medicine called AZO that appeared to be similar, so I decided to use my cell to call my mom in Michigan to ask if the active ingredient in the AZO was the same as Uristat. But when I went to reach for my cell, I realized my hands and arms had also stopped working, another sign of cataplexy. My brother had to dial and hold up the phone to my ear as I spoke to my mom, who assured me these medicines were the same. We grabbed two boxes for good measure, since it appeared there was some kind of "run" on urinary pain meds, and we proceeded to the checkout, my brother having to operate the chair controls for me. The whole time, I was silently praying that the cataplexy would go away because I would have to somehow exit the chair and get into the vehicle to go home.
However, we both realized as we exited the store, that we were going to have to get very creative to get me into the SUV. Meanwhile, my brother had recently suffered an injury to his right shoulder, which really limited his mobility of that arm, and was obviously very swollen and painful. So...we have a one-armed brother...a muscular, yet small-framed brother...and a nearly paralyzed medium-framed, much-larger sister. Somehow, with very little help from me, he was able to basically lift me up into the vehicle. As we're driving down the road, my bladder spasms began to worsen. He begins driving as fast as possible to get me home, all the while both of us silently wondering how I would get into the house and all the way into the bathroom without the use of my legs (my arms had regained some use). Once again, we miraculously got me out of the vehicle and into the house, leaning me against a wall and onto the arm of the couch for support while my brother went to get the wheeled office chair.
Unfortunately, the bladder medicine I had taken on the way home apparently released the spasm, causing me to lose control of my bladder before we could get me into the office chair. So, much to my embarrassment, my 18-year-old brother graciously helped me to the toilet and helped dispose of my soiled clothing. It doesn't get any more real than that, people. Somewhere during this ordeal, my brother made the remark that he suddenly had a new respect and appreciation for my husband, as these things happen quite often, and my husband is the one who deals with all those details. Now, this is coming from someone who lives in our home and is around us all the time. Yet, until he actually had to be solely responsible for my care, he had no idea what it was to walk in my husband's shoes! I'm sure other friends and family members would be in for quite a shock if they spent a day or two taking over his responsibilities.
At this point, I was having to go to the bathroom every 10 minutes, which is quite an ordeal when you can't move your legs! So we called the expert, my husband, who recommended my brother put together a piece of medical equipment he had recently purchased for me for such an occasion. It's a sort of walker with wheels, which allows me to put most of my weight on my arms, and use the wheels to shuffle my feet along. I tried my very best not to have another accident while the Rollator was being assembled, and I was very quick to try it out as soon as possible. Unfortunately, it does not fit through the bathroom door, so there was still some creative use of my upper body strength to get me to the actual toilet. But after falling asleep for about 45 minutes, I was able to regain use of my legs for the rest of that long and terrible night.
About 5:30am, I woke up, soaked through all my clothes and blankets with sweat. But I no longer felt feverish. Sure enough, when I took my temperature, I confirmed my fever had finally broken, probably due to the huge dose of antibiotics I had taken the night before. There was certainly a long road ahead to healing, and I have still not reached the end of this road, although my surgery was done 2 weeks ago. I'm scheduled for an ultrasound early next week to see why I'm still not recovering from the symptoms of my kidney/bladder ordeal. But I'm very, very thankful to have my partner home with me. And I'm very thankful that God has given me someone who loves me with the kind of unconditional love that many people never get to experience. And I'm thankful to have my little brother here with us and to see the strength and yet the gentleness of his character as he took over as my caregiver. It certainly brought us closer together and, I believe, gave him an experience that will make him a more empathetic and compassionate person, a lesson most people go a lifetime without learning...a lesson one can only get by walking in someone else's shoes.
