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Recap and Recovery

This year has been one of the busiest and most life-altering years. In 2019, my health continued to decline dramatically, we opened a second business, my service dog, Kana, came home to me, I graduated from college, my health started improving (thanks to Kana), we went camping for the first time, and then we started a third business. Kana, played a huge role in all of this!

(TL;DR - If you are only interested in the part of the story that includes Kana and not the whole health journey, please read My First Year with Kana instead!)

Throughout 2018 and into 2019, my health continued deteriorating and I was on a rapid descent towards immobility. Over the first few months of 2019, I started to wonder if my service dog would actually be able to assist me or if I was too far gone. Kana was being trained as a mobility assistance service dog; that meant that if I was not mobile… she’d have nothing to assist. How did I get this bad? Well, the answer to that question goes back to the beginning of 2018.

As if constant illness, nausea, dizziness, migraines, subluxations, dislocations, memory loss, fatigue, cardiac episodes, etc. were not enough, my body also decided it was too weak and too tired to fight off infection. In the beginning of 2018, I developed a UTI and then it decided to stick around for the entire year. Technically, the doctors said it was a different infection each time, but either way I was sick for over a year fighting infections. Approximately every 3 weeks I’d develop a “new” UTI. I first mentioned my recurring UTIs in my blog post, “So Much Change, So Little Time!” and then again in April’s blogpost, “Trusting Doctors.” It was during this time in April that I was diagnosed with another incurable condition (because I don’t have enough of those) called Interstitial Cystitis (IC aka Angry Bladder Syndrome).

I ended up being referred to a urologist who is supposedly one of the best around. We developed this fun little exchange with one another where I’d feel a UTI coming on, I’d go to her office to get tested, she’d say there was no sign of any infection, and then 2 days later I’d be in such excruciating pain that I’d either go back to her office or to urgent care and magically there’d be an infection. Now… I know I’m not a doctor, but I feel like watching this same scenario repeat over and over and over would lead someone with common sense to the conclusion that I was feeling the start of an infection before the test was able to detect the bacterial growth. This wasn’t the first time I felt what was going on with my body before a medical test could prove it.

Despite what seemed obvious to me, my arrogant and dismissive urologist told me that it was impossible for me to feel the infection before the test could identify it and that all the pain was in my head. Now, for anyone who has struggled with a severe illness or chronic condition, you know that this is the most painful thing any person (especially a medical professional) could say to you! I was left having to accept the original diagnosis of IC, even though I believed that I was having real infections not just unexplainable bladder pain. So I went to this urologist to, at the very least, receive council on how to manage the pain and receive treatment when there were identifiable infections. My urologist diagnosed me with Frequent UTI Syndrome… no joke. You read that right, I went to my urologist and told her I was having frequent UTIs and she diagnosed me with Frequent UTI Syndrome. Thanks for the brilliant deduction, but I could have diagnosed that one on my own. As if that wasn’t bad enough, she also rolled her eyes when I told her I’d also been diagnosed with IC. Here’s the real kicker: not only did she visibly roll her eyes at me, she also said she wouldn’t call it by its medical name IC because that made it sound like a real condition when in reality it was just phantom pain and was all in my head (every person struggling with IC right now is SCREAMING at this statement). While I hadn’t fully accepted my own diagnosis of IC because I believed I was feeling the symptoms of the infection before the tests were showing it, I knew it was a real condition many people were struggling with and I was appalled at how flippantly my urologist was accusing me, and all others suffering with IC, of having phantom pain that was all in our heads. Are. You. Kidding Me. What an asshole.

Why, you ask, did I not go to a different urologist? I tried. Each time I’d see a new urologist they’d look at my medical history, see this urologist’s name, and immediately back off the case stating, “She’s the best around; I’m sure her findings are accurate.” So, my only option was to follow her solution. Each time I had an infection she gave me a round of antibiotics until ultimately, she determined that I needed to be on antibiotics full time in order to prevent the infections. If you haven’t had a severe UTI, you can’t begin to fathom the excruciating pain one of these infections inflicts on your body. The antibiotics increased my nausea, and the pain prevented me from walking around, standing, and even from moving much at all. It took days to recover from each one. I couldn’t care for my kids when the infections were at their worst, and my mom would have to come over and care for them and the house while I lay in bed depressed and overwhelmed by pain. I’ve never been in such a dark place as I was while fighting the never-ending onslaught of infections. As I’ve mentioned before, one of the only things that helps slow and even improve my EDS symptoms is exercise and movement. As you can imagine, being stuck in bed constantly due to infection makes exercise an impossibility. Of course, this lack of movement lead to a dramatic and rapid decrease in my overall mobility. I had no hope left.

So, that’s how I got to such a dark place by the spring of 2019. By January 2019, I had been on daily antibiotics for what seemed like a lifetime. Although it kept most UTI flares at bay, I knew there were serious risks to long-term antibiotics and this scared me. I lived with the dark fear and knowledge that if I didn’t find a way to get off the antibiotics and prevent infections without them, I could ultimately risk developing pulmonary fibrosis. This is a fatal condition that may develop due to prolonged use (typically meaning 10+ years) of nitrofurantoin (the antibiotic I was on). My doctors assured me this was not a risk until I’d been on the antibiotic for many years, but I’d already endured over a year of near constant use without any hope of getting off it. I had no idea what my future would look like. Despite this fear, I was looking forward to bringing Kana home in March and was hopeful that she’d be able to help me prevent further deterioration and possible recovery from the downward spiral I’d taken in 2018.

We had many hopes and expectations for how Kana would impact our lives. Kana not only met all our expectations, she exceeded them. As if her general mobility assistance wasn’t enough, Kana also started alerting me before my joint would give out. Within a month of bringing her home, I went from falling multiple times per day to falling only 3-4 times per month. Now, I almost never fall. Beyond the foundational skills of assisting my mobility (helping me get up when I fall, providing counter balance while we walk, bracing when a joint gives out, etc.), she has also made basic tasks much easier. I could go on and on about how she has given me the ability to get my own groceries, go for walks, shower normally, go to the park, go back to the gym, clean the house, etc. etc. She helps in so many ways that most people will never see. More than anything else though, Kana gave me energy back.

It’s hard to explain, but before Kana I had to expend an enormous amount of energy and thought on each and every step I took. I had to evaluate if my body was in alignment, if a joint was likely to slip, how much pressure I’d need for that next step, how much pain it may or may not cause… it was exhausting. Walking around in normal daily life was exhausting. Once I had Kana, I could walk normally. I no longer had to put any thought into walking because I knew if and when a joint gave out, Kana would brace and stabilize me, I’d straighten myself back up, and we’d just keep moving! This freed up an enormous amount of energy and thought in my daily life.

Similarly, Kana replaced my cane. While my cane helps prevent me from falling, it also does a lot of damage to my wrist, elbow, and shoulder, and tends to throw my whole body out of alignment. In order for my cane to be useful, I have to apply pressure on it constantly so that when a joint goes out I’m already prepared to use it. This means I have to put pressure on my cane and “use it” even when I don’t need it. With Kana, I walk normally with my hand resting on her custom made harness and when I need a brace, she is there for me. Again, this gives me back an enormous amount of energy.

Thanks to all the new found energy I had, I was able to pursue some daily tasks again. More than this, I finally felt like I had the energy to fight of infection. I first tried to go off the antibiotics in June 2018. I was only able to go without them for a short time before I developed a brutal infection. The second time I attempted to go off my antibiotics was in January of 2019. Again, it wasn’t long before another infection developed. Finally, in April of 2019, I found a new doctor. This doctor was a urogynecologist and she had never heard of my urologist before. WIN! The first thing she asked after reviewing my medical information was, “Have you been tested for IC?” I told her I didn’t even know there was a test. She explained that there were a few different tests that could be run to determine whether or not I had IC. She stated that given everything she was reading from my urologist’s notes it was very likely I had IC, but she wanted to check just to be sure. I started the first of a few tests. The results came back saying unequivocally that I did NOT have IC. She then said there was absolutely no way I could have IC and changed the subject to one of identifying how to manage my UTIs. I had already tried every recommended supplement I had found, but she mentioned one I’d never heard of. At the same time, I started working with a certified dietician to determine what nutrition and supplements might best help me manage my conditions. I was put on a double dose of a supplement called Ellura and a double dose of a specific probiotic called Probiotic Synergy.

Between these two supplements, I was able to get off antibiotics. For the remainder of 2019 I was able to go on 4-6 week stretches without an infection; when one would start to develop, I’d have to take an antibiotic to suppress it. As I became more active with Kana, my body became stronger and my immune system was able to fight off infections better. When I felt an infection coming on, I’d drink a supplement called Uqora target instead of taking an antibiotic, and I was able to manage this way for longer stretches. Thanks to Kana, and my three supplements Ellura, Uqora, and Probiotic Synergy, I have been off antibiotics for almost 8 weeks now (as of Feb, 16, 2020)! I feel like I’ve finally made a breakthrough. I even reduced my daily doses of Ellura and probiotic down to a single daily dose rather than the previous double. I’m confident I’ve found a way to successfully manage my UTIs and prevent future need for antibiotics.

Shortly after Kana came home I was able to start taking the kids to the park again, going on walks with them, taking them out to events, and going on walks/jogs myself. Over the first few months I started increasing my activity level knowing if my legs gave out or if I pushed myself too far, Kana was by my side to help me get back home. I was even able to join my favorite gym again, where they generously modified all of their workouts for me. After almost 9 months with Kana, I am now walking most days without even needing her harness. Kana provides counter balance through her leash and body movements and alerts me if one of my joints is about to give out. After an intense workout, on long walks, or on bad flare days, we use her harness to help me walk. Luckily the frequency of my high flare days has reduced dramatically.

We still have a long way to go, and some months are better than others, but overall my health has already had significant improvements thanks to her constant support. We are blown away at how many activities are now available for me to pursue thanks to her assistance. We could never have imagined that my health would be able to improve so rapidly. Both my husband Kevin and I are still hoping for a future where we are able to manage my condition with little to no symptoms, but this hope is still a long way off. I had planned to jump in to 2020 guns blazing! I intended to go to the gym 3-5 days per week (I know, ambitious lol) and stick to my nutrition regimen. This unfortunately did not pan out as I’ve spent the majority of 2020 very ill with one cold/flu after another. So far I’ve endured 4 illnesses in 2020 and we are only half way through February! Gross. I finally started feeling better on Friday, and then today I woke up with a dislocated shoulder and a frozen neck and I haven’t ventured far from bed. Despite this extremely frustrating setback, I’m as determined as ever to pursue my goals for 2020. Tomorrow starts a new week and a fresh start for future habits. I am so excited to see what Kana is able to help me accomplish in 2020. With Kana’s help, I’m confident I will be successful.


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