An actual doctor has said that to me once. Another has said, “This is the last test I’m doing.” –just another way to tell you that you’re crazy, that it’s all in your head. Eventually, you just become numb. It goes through one ear, goes out the other. At first, you can’t hold back the tears. You sit there and ask yourself if this is really happening. You breakdown, feel like giving up, and then you just feel nothing. You’re completely emotionless. You’re not just numb, you’re numb to everything happening around you. Loved ones tell you to stay optimistic, that everything is going to be okay. You try to believe them and hang on to hope, but really, how much longer can you hang on? “All she wants is just that something to hold onto, that’s all she needs.” (Be Like That-3 Doors Down). I’d also like to point out I will often be quoting many songs. I honestly can say music can make a difference in one’s life, especially when they’re going through a difficult time. It’s the only source of support that won’t ever tell you that you’re a failure or disappointment. Lyrics also don’t judge you and tell you you’re crazy.
So, you’ve been to doctor to doctor, wasted money out of your own pocket, and you’re still not getting anywhere. You just want to wake up from this nightmare. Unfortunately, there’s this big elephant of uncertainty staring you right in your face and there’s nothing you can do about it. You try looking for answers on your own, research your symptoms, hoping to find something. Anything. Then the mind consuming thoughts invade your mind asking you, “What if it’s not Lyme Disease? What if it’s something else?”–yeah, it’s something else, alright. Let’s go through the list of most common illnesses misdiagnosed for Lyme, shall we? Okay, there’s Fibromyalgia, Chronic Fatigue, IBS, Lupus, Rheumatoid Arthritis, MS, Autism — not even naming a few. I’ve been told it could be Fibromyalgia, Lupus, a thyroid condition and of course the worst diagnosis of all: you’re just depressed. The doctor I was seeing, who was the only one that would treat me for Lyme, even though my tests came back negative, said to me at my last appointment (and I may add, my last appointment ever) that my anxiety and depression is playing a bigger role. Well, yeah my anxiety is through the roof because every doctor I’ve been to just dances around, throwing money up in the air knowing they screwed yet another oblivious patient. They don’t tell you what to do, what they think you should try next. So, I took it as him giving up on me. I’m very familiar with how that feels, as well. It didn’t stem from unanswered doctor visits, it came from friends and loved ones just not being able to understand, disappearing from my life. You too, will go through that or if you’ve been struggling for a while, you already are. Just know this, whether you believe it or not, you’re not alone. No matter how badly you just want to give up, no matter how incredibly lost you may feel, don’t lose you’re grip on this sometimes difficult, but precious life we’ve been given the chance to live. The days you have just some energy, try to do something. Maybe take a walk, do the laundry, watch a movie to try and take your mind off things–anything that makes you feel like you just don’t exist. You’re more than just an existing human being on this big blue planet of ours; you’re much more than just that.
I guess I should go ahead and describe to you the symptoms I have been experiencing for the past two years. It all started exactly two years ago. I woke up one morning and just couldn’t move, couldn’t open my eyes. My body screamed in pain and my head pounded. In a way, I couldn’t feel a thing. I continuously called out of work, day after day. Eventually, I went on a leave of absence. They told me they would take me back any day and hoped I’d feel better soon. Soon never came. From as long as I can remember, I was always sick. Starting at three weeks old, I had a spinal tap because the doctors had no idea what was wrong. Eventually, they figured out I had a severe ear infection and I continued to have them the rest of my life. I also suffered from constant sinus infections and Acid Reflux. Things just weren’t getting any better. All of these symptoms exasperated over the course of the past two years. And then, there are always new ones. Severe, buckling over stomach pain. Joint pain and swelling. Muscle aches and burning. Swollen and throbbing glands. Fevers. Hot and cold chills. Severe headaches. Pains in chest. Nausea. Vomiting. Stomach feels raw, that at times, you can’t even touch it. Vision problems. Eye pain and irritation. Tingling and numbing sensations. Loss of appetite. Feeling vibrate-y (best way I can describe it, like you’re sitting on top of a dryer, almost). Severe neck pain. Ringing in ears. Upset stomach. Heart palpitations. Spasms and tremors through out your whole body. Insomnia. Disorientation. Hair loss. Anxiety attacks (http://www.rodale.com/lyme-disease-panic-attacks). Stammering speech. Severe menstrual pain. Fatigue. Weight loss and weight gain. And of course, feeling like you have the flu. I know I’m forgetting some, but as people with Lyme Disease say, “Blame it on the Lyme fog.” Some of my symptoms are worse than others, some happen only occasionally, but when they all hit at once, it just sends you into a ball, not wanting to move or ever wake up. I’ve been struggling with my persistent stomach issues since middle school. Two years ago, I started having some pain in my right side, just above my hip. It then radiated to my back, pulsing, and then throbbing, not only sometimes, but constantly. It didn’t matter if I ate anything or not, my stomach and side just kept getting worse. I’ve lost count how many ultrasounds, CAT scans, and MRI’s I’ve had to check my gallbladder, liver, kidneys, etc. Test after test, just hoping for someone to see something. I even had to eat a radioactive egg salad sandwich, just to prove that I don’t digest food at a normal rate. Today, I still suffer with this pain. Most days, I’m unable to eat, have no appetite, and the pain in my right side is just becoming more intense. I’m currently not under any treatment for Lyme or my stomach. I should have mentioned this earlier that I started on oral antibiotics back in June of 2009. My stomach just couldn’t handle it after six months and so, I then started injections. And when that didn’t work, I had a Picc line put in for four months. I can’t say I didn’t feel any improvements from these treatments. At first, I did, but someone with a sensitive stomach like me, I’m not going to have the same results as someone who doesn’t suffer from the same stomach symptoms. I’ve also cut out dairy and gluten from my diet. Dairy has been an issue for a while now, but I recently went gluten free back in February of this year. I was in such discomfort with everything that I ate and decided to give it a try. I would have severe cramping and bloating. I still suffer from it to this day, but I know what and what not to eat. A doctor peeve of mine is when they have the nerve to hand you a list of foods to eat. Eat smaller and more frequent meals. Don’t drink coffee. Stay away from nightshades. Obviously, I KNOW, but guess what? Nothing has changed.
I had a recent doctor appointment with a GI specialist at a well-known hospital. The local hospital near me told me there was nothing they could do for me when I came in unable to move, buckled over in pain. So, they referred me elsewhere. My mother kept telling me, “I have a really good feeling about this!” I love her with all my heart and soul. She’s trying to do whatever she can to save her daughter, to keep me in good spirits. We then sat there, for what seemed like forever, listening to the doctor tell me that I’m depressed. Like I’ve mentioned earlier, you become numb after hearing, “You’re depressed” countless times. I just sit there, emotionless, hearing bits and pieces of what my mother is saying. I’m in another world, at this point. Somewhere far, far from where I’m currently sitting on top of yet another examination table. My father eventually comes in towards the end, after driving around, trying to find a parking place. My brother is yet again, stuck out in the waiting room. My father talks about his friend, how he had a leaky gallbladder and didn’t even know it, was experiencing the same pain as me. Watching him trying to get this across to the doctor while holding back his frustration, all I could wish was to wake up, right then and now, and say, “Guys! Look! I’m okay! I’m all better! I’m awake now! The old Katie is back!” That, of course, never happened. I was still sitting on the examination table, watching the doctor’s lips move, but not hearing a sound. My father also has Lyme. He was diagnosed about four years ago and had a positive test. Sometimes we relate, other times we don’t. That man means the world to me and more. He also suffers from an enlarged heart due to a virus that was almost diagnosed too late. We’re lucky to have him around today. A girl couldn’t ask for a more amazing family. I just wish I could make it easier for them. My brother has told my parents he doesn’t think the “Old Katie” is ever coming back. If that’s not enough to get you to snap out of oblivion, I don’t know what else is. So, I keep my head up. I stay positive for him. By now, my parents can see through my smile. Of course, there are times I still break. When you feel like you already have come close to breaking, you really haven’t. Sometimes I can control the breakdowns, just sit there, tears rolling down my face, feeling nothing. Other times, like after that doctor appointment, I can’t help but lose sight of everything.
As much as I try not to think about it, those two years of my life I will never get back. I could have gone to college. I would have still been working. I’d still be going out with friends, not worrying about a single thing, just living. Being me. There’s that famous quote, “What does not kill me, makes me stronger.”-(Friedrich Nietzsche). It’s a great quote, it honestly is, and we should all live by it. This illness, this disease—we’re not it. We are NOT our disease. I know it’s hard to remember that. I’d be lying if I said I reminded myself daily. It may seem like we are only getting weaker by the day, not being able to sleep because of the pain, tired of eating because you see no reason to anymore, but it’s during our lowest of lows that we need to hold on to something. We need to remember that this WON’T last forever. Sure, we might have flare-ups or experience a couple of relapses, but you WILL come out of it. You WILL get back on your feet again. You WILL get your life back. It might not be the same as you once lived before, but I can promise you, it will be even better. You didn’t give up. You’re still here. And that is something worth celebrating, something worth living for even more.
Healing thoughts and prayers to all-
Kate
Lyme Takes Time 