This post isn’t about faith, culture, literature, or any of the things I normally like to talk about—but it is about health and finding joy in living, and for that reason, I feel like this story is still important. This is the first time I’ve publicly rehashed some of my darkest moments facing a chronic disease, so this isn’t easy for me. But I know there are lots of people out there suffering from chronic health conditions, and my heart goes out to each and every one of them. If anything that I write here helps somebody else, then it’s worth retelling. And while I realize that my experiences have a happy ending and there are lots of others that don’t, I nevertheless want to offer hope and encouragement to anyone suffering out there, no matter the reason why.
In the summer of 2013, I’d just completed my first year of graduate school. I’d done well that year, but the high stress, late nights, and junk food routine had taken its toll on my body, and I forfeited my health in the process. A few weeks after coming home for the summer in May, I came down with a severe case of strep throat. I’d had strep before, and it wasn’t particularly concerning to me. I didn’t have health insurance at the time—poor graduate student that I was—so I went to a walk-in clinic for a strep test. To my surprise, the doctor who swabbed my throat informed me that the test came back negative. He proceeded to test me for mono, with the same result. Without giving me an official diagnosis or sending off the culture for a more in-depth lab analysis, he prescribed me a medication for strep anyway—not Amoxicillin, the standard antibiotic treatment for strep, but some odd off-brand antibiotic I’d never heard of before—gave me a steroid shot, and sent me home.
Within a few hours of the shot taking effect, I began to feel better, and I didn’t think anything else about it. Then, about a week later, while I was still on the antibiotics, I woke up one morning to find my throat feeling sore again. I was confused; I’d taken my medication religiously without skipping any doses. The strep continued to worsen, and when the puss pockets in my throat finally became unbearable again, I returned to the minute clinic. The doctor did another mono test—which also came back negative—but didn’t even bother to test me for strep again. According to him, if it had been strep, the antibiotics would have taken care of it, leading him to conclude nonchalantly that it was “probably viral” and could take up to two more weeks to run its course. I tried to tell him that the strep HAD been responding to the drugs, even if it hadn’t been eliminated completely, and that, to me, indicated it was bacterial. He dismissed my speculation, insisting I had a virus—and yet, inexplicably, still prescribed me Doxycycline…? Ok. Whatever. Once again, I religiously followed my medication regimen, rested, and drank disgusting spinach, watermelon, and blueberry smoothies made for me by my cousin, who insisted they were the secret recipe for restoring one’s immune system. Once again, for the first few days, the strep seemed to be going away. Then, to my horror, it started coming back again.
This time, I didn’t go to the doctor immediately. I wanted to see if my body, with proper care, could fight this thing on its own. But after two weeks of a sore throat, I started running a fever again, and worry set in. I was due to leave the country for a summer class at Oxford University in less than a week, and there was no way I was about to get on a plane still feeling like I was. My aunt and uncle, whom I was staying with at the time, decided they would foot the bill for me to see an actual doctor and drove me to the office. The doctor I saw was kind, attentive, and, for the first time in the whole experience, I felt like I was talking to someone who was actually listening to me. On a hunch, he did another strep test—which miraculously came back positive. My aunt and uncle were amazed: for the past month and a half, I had, in fact, had strep throat. The misdiagnosis from my first two doctors’ visits had led to a number of ineffective antibiotics and steroids being pumped into my body for weeks, depleting my “good” bacteria and leaving my immune system more susceptible than ever. The doctor finally put me on Amoxicillin—the standard strep treatment—and gave me a month-long dose of it to make sure the bacteria were good and dead by the time the medication ran out.
Sure enough, within twenty-four hours of starting the Amoxicillin, the strep started going away again. This time, I was hopeful that the length of the prescription would kick the infection once and for all. I began looking forward to my international adventure, since Oxford was somewhere I had always wanted to study. Then, around July 4, just four days before my departure, I started feeling slight discomfort in my bladder. I was no stranger to the burning sensation—I’ve had urinary tract infections before, and they have always filled me with dread. Several times in my childhood, I experienced severe bladder infections. Because I didn’t know what they were, I didn’t tell anyone and suffered in silence for weeks, which left me with a deep fear of UTIs. This time, however, I was not about to let a UTI ruin my dream trip to Europe. Since it was too late to get back into the doctor’s office, I immediately called a doctor friend, asking for a medication to take with me on the trip.
Everyone, including the doctor friend, was utterly baffled: apparently, Amoxicillin is also the drug of choice for treating a UTI. She insisted that there was no way a UTI could be the cause of my discomfort and instead felt very confident that I was experiencing a yeast infection due to the high amounts of antibiotics I’d been taking over the course of the past two months. While a yeast infection certainly made more sense, I insisted I knew the difference. This was no yeast infection. I recognized the signs of a UTI: the constant feelings of urgency and frequency, the passage of very little water during urination, the burning sensation, the inflammation that makes it impossible to ever truly get comfortable or get your mind off of the problem. Still, I wanted to cover all my bases. I bought some UTI test strips from Walgreens. They all came back negative. I chugged cranberry juice and water. The discomfort did not go away, although the chug fest did present me with the gift of 20 trips to the bathroom during the night. And when that didn’t work, I started Monistat for a supposed yeast infection. The medicine did very little other than burn the heck out of me so that I walked around for the next few days like I’d just gotten off a horse.
When the obscene amounts of cranberry juice and burning fires of Monistat didn’t give me any relief, I boarded a plane for England and began taking Diflucan (for that imaginary yeast infection everyone STILL insisted that I had), in addition to probiotics, cranberry pills, an antibiotic for my bladder…oh yeah, and Amoxicillin, of course. This brought me to a grand total of too-freaking-many medications I’d subjected my body to over the course of two months. My immune system gave up. My bladder continued to get worse. I experienced severe anxiety over leaving the country, my family and support system, and my doctor for a month while I didn’t know what was wrong with my body.
And then, the first night I spend in Oxford, on this long-awaited dream trip of mine, I spent the night crying in the bathroom from the intensity of the pain I was experiencing in my bladder. In retrospect, I believe yeast infection medication, combined with cranberry pills (which make your urine highly acidic and do nothing but burn the crap out of you if you don’t, in fact, have a UTI), and caffeine (terrible, terrible mistake) caused some sort of bladder seizure. When I finally woke up the next morning, I knew I had to go to a doctor. So I had my first delightful experience visiting a clinic in another country, where a physician tested me for yeast infection and a UTI and sent the test results off to the lab, putting me on yet another antibiotic. Then, on my birthday a week later, I called the doctor back and was genuinely shocked at what I heard. There was absolutely no trace of bacteria in my bladder. I did not have a bladder infection. I did not have a yeast infection. It begged the question: what in the world was wrong with me?
After ruling out things like STDs, the doctor finally suggested a diagnosis I never wanted to hear: interstitial cystitis. I’d come across this chronic condition in my personal research online for my bladder, but it had freaked me out so badly I had tried to dismiss it from my mind. Basically, IC is chronic bladder inflammation which makes you feel like you have a UTI all the time, even though you don’t, and has no cure. Although there is much speculation—including a few suggestions that antibiotics may be able to damage the lining of the bladder—there is no real research to suggest a cause. It most often affects middle-aged women, and the worst case scenarios of the disease render the patient so miserable and unable to function that they often have to go on disability. I read countless horror stories of the condition ruining women’s relationships, stealing joy from their lives, and leaving them depressed and heavily medicated just to survive. The thought of my own condition progressively worsening to the point of robbing me of the joys of family, travel, a career—all the things that make my life worth living—was too much for me to handle. I was forced to face the possibility that I might be in pain and discomfort for the rest of my life with no treatment in sight, and no insurance to pay for the doctor bills even if there had been something I could do. I sank into a dark, dark place.
It took everything I had just to get out of bed in the morning. I cried often and alone; I stopped enjoying my trip. My only solace came from reading passages of Psalms about suffering, and from sleep, the only time of the day when I was blissfully unaware of my bladder. During this time, my mother was extremely supportive of me. Even though we were on opposite sides of the ocean and without cell phones, she communicated with me via instant messenger every day. She and my father did hours of research on their own and talked with doctor friends about my condition. Finally, she put it in perspective for me: as convinced as I was that I had this terrible disease, I couldn’t do anything until I returned home for testing. So in the meantime, I might as well make the most of the trip I’d worked so hard to go on. The truth of her words struck me, and the next morning, I rallied and made a little more effort to get out of bed. Even though things still felt dark and bleak to me, I submerged myself in the serenity of the countryside. I spent hours a day in meditation, reading the Psalms. Somehow, I made it through the month-long trip with a few good memories of my stay there and an A in the class.
By the time I returned to the States in August, I’d begun to notice that I’d have a day every so often when my bladder would feel different—not healed, but significantly less irritated than usual. I allowed myself a faint hope, and I celebrated on the day I finally got off all the medicines for the first time in four months. I had another doctor’s visit, during which my OB/GYN told me she could recommend me to a urologist, the next step in diagnosis, but I turned it down. There were several reasons for my decision. First, IC is extremely hard to diagnose. Because they don’t know what causes it, there’s no real test for it, and the only way to determine it is by process of elimination. It’s a long, rigorous, and expensive process full of painful, invasive procedures that, according to my research, often leaves patients in MORE discomfort than if they’d left well enough alone. Even if I had wanted to subject myself to more doctors, more medicine, and more testing, we were talking about a months—or years—long process that I simply couldn’t afford without insurance. I was through with doctors and antibiotics. I began to wonder if there was another route.
At the end of August, I returned to graduate school in Texas. It was there that I began telling a good friend about my condition—a friend who happened to have Crohn’s disease and was no stranger to inflammation in the body or chronic conditions that affect your quality of life. She told me how Crohn’s had initially ruled her life and thrown her into a depression much like what I’d been experiencing, and how she was able to regain a degree of normalcy in her life by going the natural route, radically changing her diet, adding natural supplements and therapies rather than medications and procedures. I followed her advice and visited a naturopathy specialist, who used Eastern medicine techniques to determine that my system was too acidic—the result of consuming excessive amounts of cranberries after misdiagnosing myself with a UTI. She placed me on five different natural and herbal supplements that, in combination with my radical diet change and only-water regimen, seemed to help a little. I also discovered some simple relief solutions for my bladder along the way, including taking long, hot showers, which seemed to alleviate the inflammation and reduce urges to urinate. I found that sleep helped IMMENSELY, probably because it reduced my stress level and allowed my body time to focus on healing. I began going to counseling to deal with the stress and depression. I found a support group in my friends, many of whom surprisingly had been through similar health situations before in their lives and offered a huge amount of comfort to me. My mother was amazing during that time, offering to go on the radical diet with me for moral support. I found courage and hope in all of these places. And I prayed. A lot. Loudly, fervently, and desperately.
In October, I noticed my first significant change. For days at a time, my bladder seemed to improve before regressing back to its normal uncomfortable state. As time wore on, the good periods lasted longer, and the bad periods (which I call flares) became shorter and less intense. While the roller coaster ride was still hugely emotional for me, for the first time, I allowed myself a glimmer of hope that there may be a day in the future when I would have a healthy bladder again. The diet worked wonders for my body, as did the intentional exercise, therapy, prayer, and sleep. In early November, I weaned myself off of the supplements after experiencing bizarre tinnitus in both ears, which was affecting my sleep and causing the anxiety and depression to return. I suspect that either the combination of supplements together or the dosage caused the disconcerting side effect. After the supplements took a few weeks to work their way out of my system, the ringing in my ears subsided, which was a HUGE relief for me, as I was dreading having to make yet another doctor’s visit for yet another bizarre health problem. I kept the supplements on hand, though, as they had seemed to help my bladder a bit, and it was comforting to know they were there in case I ever had a particularly bad flare.
I’m deeply and humbly grateful to my Creator and my family and friends who supported me, all of whom have allowed me to tell you that this story, which was the darkest, hardest thing I’ve ever gone through in my life, has a happy ending. It has now been a year and a half since I first came down with strep and this terrible ride began, but over the course of the past eighteen months, my bladder has continued to improve. I still have flares and weeks when I have to be cautious and cut out caffeine, but I now know the things that trigger the flares and how to react to them. I have ways for dealing with the discomfort physically, emotionally, and spiritually. I thank God for every moment of every day that I am NOT thinking about my bladder, for each of those moments is truly a blessing. After having the joys of my future flash before my eyes, I now look for joy constantly and find it even in the smallest, quietest, and most unexpected moments of life. While I’m not sure that my bladder will ever be what it once was, the fact that prayer, healthy decisions, and natural remedies have allowed my body to slowly heal itself is all I could ever ask for. I want to encourage anyone out there
suffering from a similar condition or a chronic disease in general: it CAN get better. And with the right treatment, it WILL get better. That treatment may include medicines and testing, but it doesn’t always. If you’ve been to countless doctors and feel like you have nowhere else to turn, turn back to nature. Before there were doctors, there were herbs that treated the very same ailments without all the chemicals. People used natural remedies for centuries before modern medicine forced these remedies into obscurity. Your answer may lie there, as mine did.
There are a few things I think those dealing with a chronic disease should remember that have been immensely important in my own journey of recovery:
- What you put into your body makes a difference. A huge difference.
- Your physical health is only one component of your overall health. If it suffers, your emotional, spiritual, and social health will also suffer. Slow down and take care of ALL aspects of your person. They are fundamentally connected.
- Stay off the Internet. If you want to find horror stories to freak yourself out, you will. If you want to confirm that what’s happening to you is a terrible, horrible thing that will ruin your life, you’ll find stories that’ll confirm that. There’s no point in subjecting yourself to unnecessary torture. Instead, surround yourself with a real-life support system of friends, family, counselors, and doctors. More often than not, you’ll find people who can relate to what you’re going through in the unlikeliest of places.
- Keep going. It’s okay to rest when you’re feeling overwhelmed, but after you take an hour or a day or whatever you need to sit in that darkness, get back up again. Move toward the light. Find things that can still give you joy; I promise there are some left. My mother always told me that one of the best ways to feel better was to help someone else in need. I think she’s on to something.
- I know you and I may not share the same faith, and if we don’t, that’s ok. But I do believe that prayer and meditation work wonders for the soul (which, as we’ve established, is connected to the body). I would not have made it through my darkest moments without my faith. Find something greater than yourself to believe in to pull you through. If you want to try praying to God, you may find what you’re looking for there.
Lastly, I do want to offer some practical treatments and I have found to alleviate my symptoms in case anyone reading this is experiencing similar problems:
- Diet: eat bland foods. Avoid anything spicy, acidic (this includes citrus fruits, strawberries, tomatoes and tomato products, and especially fruit juices), anything high in white sugar (I tried to eat 8 grams or less of sugar a day), artificial sugar, or unfiltered water.
- Drink: caffeine and alcohol are two of the worst possible things you can subject your bladder to, even when it’s not irritated. Just don’t do it. I would also recommend cutting out carbonation and, as I mentioned before, tap water, fruit juice (basically anything that isn’t filtered water). If you absolutely have to have something sweet, you can try adding a drop of Stevia sweetener to your water (it’s a natural sweetener, so it’s better for you). A little milk might also be ok.
- Sleep: works wonders, period. During flares, I always take a nap. I wake up feeling significantly improved. If you’re experiencing overactive bladder, sleep also signals to your body to slow things down. Make sure you’re getting at least 8 hours a night. Reduce your stress as much as possible and treat your body gently, as if you were getting over an illness. In a sense, you are.
- Therapy: what this looks like varies from person to person. For me, it meant having a supportive family long-distance and a supportive friend group who kept me accountable and checked up on me in person. I had a counselor I saw once a week, a Christian naturopathy specialist who worked with me, and a church life group who prayed over me regularly.
- Prayer: I can’t recommend spiritual practices for those of other faiths, but I know for Christians, this component is vital to recovery. Provide a quiet time for yourself of at LEAST thirty minutes a day to simply be still, practice relaxation techniques, deep breathing, and talking to the Creator. If you feel like you need to cry, cry. If you feel like you need to scream at God, scream at God. He’s glad you’re talking to Him no matter what that looks like.
- Exercise: I have found that a moderate exercise of about thirty minutes of cardio a few times a week—even if it’s just a brisk walk—makes a world of difference. With bladder issues, too little or too much exercise can make things worse. A walk or jog every day is a good balance…and a good time to soak up some vitamin D from the sun, which boosts your spirits.
- Heat: My favorite method is taking an extremely hot shower at night no more than an hour before I go to bed. I will actually sit in the shower and let the water hit my bladder for at least ten minutes (I’m sure a heating pad would have a similar effect…I just love showers). It’s important to go to bed soon after, because if you wait too long, you may need to urinate again before bed, which in my experience cancels out the calming effects of the shower.
- Supplements: although doctors will tell you that there is next to nothing you can take to treat this condition medically, I have found some natural remedies that DO at least make a difference. My herb of choice: Boswellia. Folks, this is something you want to invest in. You can buy it relatively cheaply in pill form at a health food store or online (I order mine off Amazon.com here). Boswellia targets any inflammation and irritation in the body and diminishes it. It also works for things like rheumatoid arthritis, Crohn’s disease, and Irritable Bowel Syndrome. I carry Boswellia around with me everywhere I go, and I take it as needed if I have a flare (you can take up to four pills a day, depending on the severity of the inflammation). Interestingly enough, I didn’t realize until this past summer that Boswellia is actually another name for frankincense. Ironic that the remedy for my illness was in the Scripture all along.
- Other remedies you could try are marshmallow root (again, find it at the health food store), which you can steep in water to make a tea, or turmeric, both of which also target inflammation in the body. Ask around for essential oils or other treatments people take for chronic conditions—you just might stumble across one that helps you.
Even if your condition doesn’t go away, I promise you it is possible to feel better. Don’t hesitate to reach out to me if you need more encouragement or have questions: firstname.lastname@example.org. I’d love to connect with you. Also take advantage of the support offered by the people around you. Take courage—this is how we overcome!