I know exactly when my infection started. I feel like I knew something was really wrong all along, but doctors continued to tell me otherwise. My fight to understand and discover what caused fevers capable of starting a fire and daily vomiting never waned. There were countless days I wanted to give up, give in to what the doctors were telling me, give in to the doubts, and just let go, but for some reason I didn't. Instead, I listened to a tiny, whispering part of myself. A part of myself that encouraged perseverance instead of doubt. I ignored the urging of my soul the day of my accident, but this time, this time I didn't and it paid off in dividends.
After six months of rehabilitation, I returned to college. In retrospect, it was probably far too early to dive back in to school, but I didn't have any where else to go. Miami University was my world and where I was living when I fell. It seemed like the right thing to do. Immediately, I knew I was struggling. I knew I couldn't handle adjusting to this new normal so quickly. Instead of admitting defeat and trying something new, I fought and fought to return to my old life. In addition to attending classes everyday, three times a week I had to travel to physical and occupational therapy in Cincinnati, an hour away. I loathed waking up in the morning facing my life. As if getting dressed wasn't enough of a challenge, I also had to figure out how to make it to class on time, eat well, do homework, and hustle to therapy at the end of each day. An hour to and from made the whole experience rough and unbearable. So much of me wanted to just stop. It is embarrassing and humiliating to admit the frequency with which I thought dangerous and suicidal thoughts. I would have devastating falls to the floor and have to call my best friend Briana to rescue me. She was a college student too, but ended up spending her college years caring for and rescuing her friend from a number of situations. She always came running and quickly learned how to pick me up and put me back in my chair all on her own. Briana would arrange nights out for us, calling ahead to plan for accessibility. She would encourage me to meet her at dining halls where I was too afraid to wheel myself. She would stand half way or at the top of the hill so I could see her and wait patiently while I tried to master the route myself. Because of her, I eventually learned wheel myself all over campus. It was too much for someone else to bear, but she did it and to this day I can't think of her or talk to her without crying the happiest of tears. She will forever be one of the brightest moments of such a dark and scary past.
I stayed at Miami University during the summers. I took a very light load of classes and tried desperately to catch up with what I missed during the regular semesters. The second summer I stayed was when I know the infection started. I was rushing to take a shower before physical therapy. Earlier that morning, I sped to class, ate very little, returned home, and jumped in the shower with only twenty minutes to spare. My old self, my walking self, would have handled this scenario without an issue. But, my new self, the paralyzed self, needed more than an hour to complete such tasks. I still am surprised and overwhelmed by just how long it takes me to complete my routine or daily tasks I once flew through with ease. It used to reduce me to tears, but now I just get through it and know that it is just time and all will be well, no matter how late I am. Rushing is never, ever worth it. The shower is especially tricky because of the soap and water. My legs are dead weight and if not balanced properly, can easily slip and buckle, forcing the top of my body to plunge to the floor along with them. And that is exactly what happened this hot day in July. I felt the force pulling me down, tried to grab bars and anything I could to prevent such a fall. It didn't matter what I did, I knew I was going to hit the hard, tiled floor and I did. I heard my body hit the floor. I knew it was a devastatingly hard fall. Luckily, I was able to pick myself up and return to my chair. It took a few tries, but eventually, I was sitting upright. I felt relief because I was back in my chair and couldn't find any blood, but fear because I knew what I probably did to myself during the fall. I grabbed my mirror, a hand held mirror my therapists gave me to check for bruising or cuts in a situation like this. My legs were fine, but then I saw it. Right where my "sit" bone is, was a huge, red, throbbing mark. It would eventually become a nasty bruise likened only to one received in a football game or a rugby match. And because I have to sit all of the time, the pressure right on the bruise did not help. The bruise gave way to an open and nasty wound. It started small and scrape like, just as most things do, and over time festered until it was large enough to hold a few baseballs or as my dearest friend Justin commented, "you could smuggle drugs in this thing." Humor is always welcome, no matter how dry and dark. Justin's humor has sustained me through many of my most upsetting and difficult moments.
As the wound started appearing, I quickly called doctors and nurses, anyone I could think of to tell my news. During therapy, I was warned of wounds, wounds, wounds, and how dangerous they were. Because of the nature of my injury, I was assigned a Case Manager. Just writing that sentence makes me throw up in my mouth a little. The woman I was assigned may have had a plan all along or maybe she became caught in a web of her own making and couldn't get out of it, I don't know. I don't really care what her reasons were for doing what she did. She saw an opportunity and pounced. She saw a young, naive, lonely girl desperate for help and took full advantage. The story of this woman deserves its own post, but her manipulation of facts, doctors, and my insurance company played a huge role in the loss of a decade of my life. After I called her, thinking she was my go to person for help, she came up to Miami to see my wound for herself. This is so unprofessional, so out of line, but I had no idea at the time. Her comment was, "well this isn't really a big deal at all." I begged to make an appointment with my doctor at the time and after days of pleading she finally caved and set up the approval with the insurance company. Unfortunately, the doctor, Dr. K I will call him, was not very seasoned or knowledgeable about paraplegics. I'm not sure what he knew, but he didn't know about my condition. He saw the wound and told me "not to do anything, it will just go away on its own." I knew this was silly advice. Everything I learned up to this point was the opposite of his reaction. Of course, as a young twenty year old, I preferred Dr. K's answer, but I knew deep down inside it was ridiculous. About a month later, as the wound grew and grew, I smelled a funny smell coming from it and was also draining. Both of these were terrible signs of infection. I tried once more to see Dr. K, but he sent me home, yet again. The fevers started and never stopped. I would lie in my room shaking and shivering. I pushed my Case Manager so hard she finally made an appointment with a plastic surgeon. Yes, I am aware this sounds like the dumbest way to treat a wound...to see a plastic surgeon. I didn't have the knowledge I have now and I went along with her bogus plan. Not only did she know this surgeon, she also received botox from him as a trade for referring me. Because of my weakened state, I started to form heel wounds on each of my heels. Brilliant Dr. K ordered ancient leg braces and insisted I practice walking in them, with tremendous amounts of aid, to strengthen my core and my legs. Instead of gaining anything positive from this experience, I ended up with two more gaping wounds. My Case Manager recommended and arranged an appointment with a podiatrist. Another brilliant move on her part. It is actually very painful to type and relive this knowing what I know now. I would never stand for these decisions now, but I did and I paid for it. I continued to show up for appointment after appointment. Nothing was healing. And when I say not healing, I mean really not healing. The wounds grew deeper and wider and more and more infected. My fevers continued to rise and the nausea worsened. I was referred to a urologist. The urologist performed test after test, trying to determine the cause of my symptoms. He prescribed countless antibiotics trying to stop the fevers. As I became more and more ill, I also became more and more of an expert. I learned what antibiotics kept the fevers at bay and began requesting them like a drug addict. At one point my urologist became so frustrated he finally said, "I can't just keep prescribing antibiotics without knowing the cause of the symptoms and type of the infection. And why am I the only one giving you antibiotics?" My Case Manager didn't appreciate this challenge and so we left him and the antibiotics. The plummet downhill became fast and fierce. I rapidly lost weight and fevers and vomit became a part of my daily routine. I saw doctor after doctor and no one could determine what was wrong with me. I was sent to an anorexic and bulimic psychiatrist and suffered the humiliation of being told "it was my own fault" I was not progressing. My only orders were to eat more and gain weight and fast. One of the many psychiatrists said, "Now you know you don't get fevers from anorexia?" I felt like saying, "duh." And I am pretty sure I said it outloud. After years of struggling to live with so much pain, so many fevers, so many days and nights in my bed, so many showers because of vomit or other accidents, I almost gave up and let go. I was so tired and so depleted. I tried to make the best of it. I tried to do fun things to take my mind of the hell I was living, but nothing helped. One evening on the way to a Greek Festival with friends, I noticed huge red streaks up and down my leg. I rushed myself to the emergency room and was given an oral antibiotic. The streaks left, but the symptoms didn't stop. My blood counts became so low I had a blood transfusion. My symptoms were getting worse my the minute. The doctors I saw tried many methods to heal the wounds, I even had to wear a machine that made tooting noises as it gurgled the fluid draining from my wound. I wore the machine to bars, to work, to dance competitions, everywhere. Any vanity I had quickly flew out the window. Massive and complicated surgeries were recommended and I refused. For some reason, I knew I was infected and knew I would never heal from surgery. I still can not believe I listened to myself and continued to refuse. Had I given in and undergone the surgery I would probably not be here today. And amongst all of this something happened that changed the course of everything.
I firmly believe good can come out of the bad, the devastating. I was unsure of this before, but now I know it to be true. When things look their absolute worst, when you count yourself out the most, this is the time when grace can and will happen. It may not come in the form you expect or you want to happen, but it comes if you allow it. I was so tired of illness that I felt like I needed a break. I just wanted to get away. I did this often, but for some reason this time was different. I was terrified to leave, but forced myself to go away. I went to a dance competition with the hens. As we were driving, a circuit was tripped and a heat seat in the car, in the seat where I was sitting, was left on for hours. I didn't have a clue how hot it was getting because I can't feel anything from the waist down. When we arrived at our destination I will never forget the moment Bridget helped me out of the car. As she helped guide my tiny, frail, broken body into my wheelchair, she very quietly said, "Sar, your pants are soaking wet." I thought I had a bathroom accident and was mortified. Mortified mostly because Bridget, a young girl at the time, had to witness something so awful. I knew how sensitive she was and how much it hurt her to see me struggle and I never wanted to her to have to deal with my pain. I wanted to protect her from the ugliness of my reality. I went straight up to my room and started to change. Only, it wasn't a bathroom accident. My pants were just soaked in one area. I decided to take a shower and as I was rinsing off and soaping up, I felt it. I felt the largest and widest and deepest burn I've ever felt or seen in my life. It was larger than my hand. The wetness on my pants was the blister that had just popped. I bandaged it and went on with the weekend. I had no idea what to do or what to say, I just froze with fear. After two days and after I returned home, I got out my trusty mirror and saw the burn. It looked like something right out of an episode of Grey's Anatomy. I called my Case Manager because I still wasn't bright enough to realize her part in all of this and you guessed it, she called her trusty plastic surgeon. But this time was different. I knew something was different. Fear was dominant, but relief was also back again. Somehow I knew the plastic surgeon wouldn't treat this burn. He didn't even want to see me this time. Finally, he said he couldn't treat me anymore and referred me to a wound clinic. The fact that a wound clinic even existed was a miracle to me. I spent a number of days and nights searching and googling about wounds and infections and every thing I read urged patients to seek care at a wound clinic. I asked my Case Manager about this and was always told my city didn't have any. But now, suddenly, one existed and I was allowed to see the doctor. Unfortunately, this doctor took the burn seriously, but not my infection. He put me on the wrong IV antibiotic, but it was enough of one to calm my symptoms for a bit. And when I was without fever for any length of time I began working on research, determined to figure out what was happening to my body. As I googled "heat seat burns" I learned I should probably find an attorney. So I did. And though the first one I found was a sheer disaster, the second one I called was a gift. I never will forget the day I called. I was met with such understanding and compassion. Finally, someone was willing to help me. Sure she was an attorney and not a doctor, but she helped me more than any other professional up to this point. And in going over my medical file, she found a smoking gun. She found the pathetic trail my Case Manager left. She saw the timeline of the horrific care I was receiving. And when I left the first wound clinic and went to the second one, she sniffed out the errors made there too. And because of her patience and detective work, I saw the mistakes. I stopped taking the answers and advice I was given. I knew the recommendation to just gain weight and eat more was futile. I knew it and I had back up this time. The nasty, awful burn ended up saving my life. Yes, it did set me back tremendously, and yes, it was almost too big to heal, but it saved my life because it brought me to my attorney. It brought me to a kind and loving friend that urged me to refuse to take the treatment I was given. People like to give lawyers a hard time for being cold or callus, but that is not my experience in the least. They are mothers and fathers, sisters, wives, and friends. And finally, finally, I had someone on my side.
I called the insurance company and told them what my Case Manager was doing, how she was manipulating the situation and keeping vital information from them. I saw her for two minutes after my discovery, she tried one more time to meet me at an appointment and beg for mercy, but as I looked into her eyes and saw her weight gain and her adult onset of acne, I saw the fear in her eyes, the fear because I knew what she was doing. I didn't need her to say anything more and I didn't need to say a word. I just said okay to what every she was spewing and left. I left the second wound clinic, requested my chart and never looked back. The doctor at this wound clinic left so many emotional wounds it took me years and years to recover. He allowed my infection to smolder and rage on so much that it caused yet another wound, this time so deep, it exposed large sections of bone. Something I never want to feel and discover again. Recently, I finally gained the courage to write him and tell him the penetrating scars he left. I don't expect to gain anything from my letter other than the hope he won't do it to some other innocent, sick, and vulnerable person. If I can save one person from his poor and incompetent care, my struggle will be worth it. I left the clinic and made my own decision on where I wanted to go and sought my own approval from the insurance company. I was assigned another Case Manager who turned out to be just as bad, but immediately requested another one. Finally, I was assigned a Case Manager who actually manages my care. The one I have now is another reason I am doing so well. Her professionalism and ethics are astounding and her willingness to help properly and offer appropriate care is irreplaceable. With her help and guidance, I became my own advocate. I didn't take no for an answer and I still don't take no for an answer. This time was different. I was in charge. I just needed a tiny seed of confidence and I found it. I wheeled my damaged body to the office of my choice at the hospital of my choice. I fought for the doctor I wanted and finally, because of a huge stroke of luck, saw him and became his patient. He took one look at me and said, "it looks to me like you have a pretty bad blood infection." He scheduled tests and referrals. I didn't have to do a thing. A doctor finally took care of me and took charge. He sent me to an infectious disease specialist. For as long as I live, I will never forget the cold, October morning I went to see my ID doctor. I drove myself and parked right by the door. I was ready to hear what I had always heard, gain more weight, eat more, blah, blah, blah. I sat alone in the patient room, chilled with a fever, scared, confused, and hopeful all at the same time. Suddenly, something inside of me was telling me this was it, I was going to know what was wrong. The doctor came in and sat down beside me. He very gently explained that I had a raging, aggressive blood infection. He found an old fax in my chart from one of my many emergency room visits detailing the type of infection. The fax was from at least six years prior. He did more blood work to determine it was in fact what he found and then sent me straight to the hospital for yet another PICC line. He explained this infection was so big and so difficult to treat, it would take three years of antibiotics. The IV antibiotics would only last for a time and then I would start a round of two oral antibiotics. He asked how I managed to stay alive all of this time and we discovered I figured out how to keep it at bay for part of the time with certain antibiotics. I never was able to get rid of it, but figured out how to keep the symptoms down here and there. I probably should have been devastated to learn I had a more than difficult infection to treat, one that doesn't always respond to treatment, but I wasn't devastated at all. In fact, I felt like I won the lottery. I finally knew I wasn't crazy, I wasn't causing my own demise, I wasn't pathetic or needing to eat more, or a waste of space. Everything every other doctor told me was wrong. These two doctors finally figured it out. I wheeled as fast as I could to my car because I knew the tears were coming. I felt the pain in my jaw before a good cry comes. I felt the knot in my throat. And when I got in the car I cried and I cried. Not because I was sad, but because I was so happy, so thrilled to finally know what was wrong with me. I took the pain of the PICC line insertion like a champ. If you have had one before you know having it put in is one of the most excruciating things to ever experience, but I didn't care. This was at least my fifth PICC line and I could have cared less about the pain. I wanted to start the correct antibiotic so badly I was like a kid on Christmas.
After only two doses, the fevers stopped. After a week, I stopped vomiting. I still had and have issues with eating because I am so afraid my food will come up, because it did for so long, but it gets better every day. And getting over it is nothing compared to what I went through, nothing at all. It took a long, long time to finally get rid of the infection and took even longer for my wounds to finally start healing, but they did. The massive wound with exposed bone is now miniscule. Where the burn was is still a little, tiny opening that closes and then opens again, but it is under control and will heal as well. I still see my favorite doctors regularly and still experience small setbacks, but progress is rapid and healing completely is imminent. And although I still have days where I can't seem to climb the mountains I need to, I know I am already at the top of Mount Everest. I feel like the last ten years of fighting this infection and finally healing were lost. I spent the entire time managing illness and hearing things a sick person should never have to hear, but despite all of this awfulness I made it. I don't need a celebration or a medal or an award. Every day I wake up and breathe and sit up and get in my chair is reward enough. I don't have a fever anymore. I don't vomit anymore and eat more and more every day. The rat race, greed, expectation, and social expectations are lost on me. My imagination runs wild with dreams, but then I remember I am already living my dream. My bucket list is complete. I truly understand what the gift of life is now. I know the gift is found in taking one breath at a time.
There are many more details and stories to expound upon, but this is enough for now. I've been absent from blogging for so long because this is the first year, in ten years, that I experienced the holiday season as a well person. I turned 34 on the twenty second of December and this was the first birthday in a long time I wasn't sick. 34 is my new favorite number. I tried to be so present and soak up the moments, I was simply just too tired. I wrote so much, but just couldn't finish anything and I let it be okay. But, this is a new year and I have much to share. One of the first ornaments I pulled out of the box was my Irish Dancer ornament and her legs were broken. Both legs came off while she was in storage. I didn't glue them back on...I kept her just as she was to remind myself the broken is beautiful and the imperfect is what is perfect.