Monthly Archives: August 2011

“There are no endings, only new beginnings.”

Family, loved ones–the one’s that mean the world and more to us. The one’s that make us feel worth it, worth this fight we’re going through. The one’s that want to be by your side, always, but find ourselves becoming farther and farther away from.

Whether we’re just trying to save them from seeing the pain or to save ourselves from ourselves, we’re doing just the opposite. And the times they think they understand and tell you to try doing this, go do that, to try and “get your mind off things”, just make you feel worse, helpless. You try with all your might to forget the pain, forget that you’re on the path that you’re feet have currently been planted on. You’re just stuck. And you just wish you can wake yourself up, yell at your body to stop being this way, preventing you from do thing things you enjoy, being with the people you love and miss so terribly.

It’s not always dark. Every chronic illness fighter see’s the light, the good, from time to time. It might not happen as much as it used to, but you certainly have not forgotten about the precious, simple joys in your life. And that’s why you’ve hanged on this long, because you remember. You remember when. At times, it hurts. Memories can be very painful, but it’s the tougher times that we’ll look back on and smile, maybe even laugh at. Because these difficult times, these particular dark times made you the person you are today, even if you’re still fighting to get your life back. Most importantly, even when you’re not given an answer or any reasoning for this disease, any of this, even when you feel like you’re holding on to nothing but air at times, you can and will see the joy in things. The simple things. The smile on your friends faces again when they finally hear from you. The warmth of hugs that you never want to stop feeling. The laughter roaring around you from old jokes and “Remember that time…”. It all seems so far away, so out of reach—but we forget that this disease, this illness is not us, that it’s not our fault and we deserve to be happy. We DON’T deserve to torture ourselves, shutting ourselves out from the world, even when we feel like it’s the right thing to do. And the happier memories, the ones that you constantly think about and maybe even make you shed a few tears, those are the memories worth hanging on to. Not the pained memories when you felt you were losing everyone around you or the times you felt nothing but guilty, like you could have, should have prevented this, somehow.

But even after you reach out, reconnect, the fear of rejection, losing all support and contact all over again, are not far from your mind. We need to be prepared, yet not focus on the worst. We have to realize that what we’re going through, this fight, is not easy for anyone else to just take on like that. A friend may want to see you, but you don’t want them to see you at your worst. You want them to remember how you were before this disease has taken such a toll on you. You might be nervous about catching up over the phone, as well. What if you run out of things to say? We can’t help but think the worst. We go through a period where we just shut out everyone and everything. You then take this big step, communicating with the ones you thought had long forgotten you, the ones you thought had given up on you, your friendship, your memories. But you don’t want to think about all the memories, all the good times. You want them back, you want your life back. And you want to start over again, even if reconnecting was too much to bear for either you or your loved ones. You will start again, with or without them. There are plenty of new memories to be made, to be cherished, whether you want to believe it or not, with new faces that actually understand. But if you have that chance to rekindle a friendship, a relationship–would you face the risk of losing them all over again?

Hang on to the ones you have now, the ones that have shown you just how much you are worth to them, hang on to THIS moment in time—because anything can happen. Let loved ones be there for you. And no matter what, never blame yourself over their reactions. You were just trying to protect them from seeing the pain. And if they can’t understand how much love, how much respect you have towards them, just surround yourself by the positive loved ones in your life who are able to understand. But most importantly, forgive them. Forgive the ones who just couldn’t bear to conquer this temporary journey with you. There’s no reason to go around with such a burden in both your heart or theirs.

When you feel like you’ve lost everything, after reaching out, reconnecting–you haven’t. Just think of it as they were never there to lose in the first place. That doesn’t necessarily mean to forget them. Forgetting won’t ease the pain, but you do need to put yourself before others, for your health’s sake. Whatever happens, happens– but this isn’t the end. This isn’t the end for you. You haven’t even begun. No matter what age you are, what illness you’ve been diagnosed with, what stage you’re at with your illness, you haven’t even begun. Life is short. Forgive. Start over, if you must. And, begin again. Continue your fight. Don’t stop. Lyme DOES take time. If only everyone knew how much time it has consumed from you, from your day-to-day life, maybe they’d understand just how much patience, how much time you really do need dealing with this disease. Or maybe it’s for the best that they’ll never truly know. We don’t want to cause more pain, we just want to be understood.

We WILL get the treatment we deserve!

We WILL give this disease the awareness it deserves!

We WILL NOT stop fighting!

Healing thoughts and prayers to all-

Kate

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22 going on 82

I can understand how drastic that sounds. And negative, someone close has commented. Actually, most 82 year olds are out living their life, popping calcium pills. So, really, no, it’s not that drastic. You just feel like you’re in someone else’s body. I’d say old, but I believe no one grows old, just more young at heart. Age is just a number and we need to stop living our life around that particular number. THAT is negative. You know that saying, “Act your age, not your shoe size”? I’d be 9. So, cut yourself some slack. Turn back time a little–just don’t Hand-Jive or Disco yourself into a brace and/or coma. Do whatever you have to do to get yourself to realize you have so much life in you. And so much to give.

Whether we accept it or not, our body ages as the years go on. Some of us age more quickly, some you can never guess that they’re 60, but they truly look 30. That’s exactly how it is with someone who is chronically ill. You may be 22, but you don’t look it. People will say “Stop talking that nonsense” and you just wish they could see yourself through your eyes, because maybe, maybe they’d understand, even just a little. You don’t recognize yourself in the mirror anymore. You’re hair thins, becomes brittle. Your eyes look like you were punched in the face a few times, the purple circles never going away. Makeup doesn’t cover your blemishes that have been collecting more and more in groups. Your knees quiver going up and down the stairs. Your hands shake. Easy tasks become harder, like opening jars, bottle caps, carrying the laundry, doing the dishes. You feel like you’re just going to collapse. Collapse from never stopping, just non–stop adrenaline that is currently keeping you from feeling the pain. And yet, you pretend you’re okay with it. Yeah, I’m 22. But this is not my body.

I guess it is for the best that no one can see exactly how you see yourself, how you feel. Friends and loved ones may not understand, but you certainly don’t want them experiencing symptom to symptom with you. But, in a way, they are. They see when you are in pain, when you’re buckled over and you don’t know why. When you sit at the dinner table and don’t touch your food because you feel too sick to even try a bite. When they watch you struggling and taking your time to sit down, sit up, walk to wherever you’re trying to get to at that moment. When you just don’t have the least bit of energy in you to make it to a family outing. They are fighting this fight with you, whether you want them to or not. It’s not just hard for you, it’s hard for them to watch the person, the one they love, grow up through the years, only to come to a stop. A brief stop, yet it feels like this will last forever. And that whole “22 going on 82” feeling or whatever age you may be, but certainly don’t agree with, it goes away. It eventually starts to lessen. You may not feel 100% or even 85%, but it’s better than no improvement. And any improvement is good.

Thanks to doctors just throwing out different diagnosis like they’re candy, there are many people that are never correctly diagnosed until their symptoms start taking over their life. That’s why we feel the way we do. Lost, scared, hopeless, and feeling older than we actually are. No one can give you a straight answer why you feel this way. “No, it’s not Lyme Disease.” “You’re just depressed.” “It’s only IBS.” –Need I go on? We hear these negative words thrown at us so often, of course you’re going to start to wonder “Maybe it is all in my head…” And you’ll believe it. You’ll start believing that this is it, you’re going to be sick forever, and before you know it, you’re in a rut you can’t pull yourself out of. But, what can pull us out? And even better, what will? Just knowing you came this far, isn’t that enough? Can it be enough for you? Yes, and it will.

As I have mentioned before, never take a day of your life for granted, no matter how horrible you may feel, how old you may feel, how bad it gets, even if you’re bedridden—you’re still fighting. You are. That muscle that never stops working (even if you’ve already given up on yourself), pumping blood throughout our entire body, is still beating. That is your answer. If your heart is still beating, you’re still fighting. There’s no reason to give up on something so pure, so amazing, that’s getting us through and will continue to get us through this difficult path our feet are currently bound to.

This body, it might not feel like it’s yours, but it is. It always has been and just like marriage vows, “Through sickness and in health”, we need to respect our bodies, love our bodies, even through the darkest of days.

Healing thoughts and prayers to all-

Kate

Note: I am not yet 22, though I felt this was the approprate time to post it.

“I can’t imagine being older than 22. I’ve no experience at it. I know it’s not 1926. I just need it to be.”

Eleanor: “It’s given to and taken away from all of us.”Awakenings

As with Lyme Disease or any chronic illness, there are days we feel stuck, like we are in a deep sleep, just like Lucy and the rest of the characters in the film. You realize how sick you are when your life becomes almost a distant memory. You just don’t want to let go of it. We need to believe us too, will experience an awakening, as well. To be able to live life again, maybe not like you use to, but to go out and enjoy the things you took for granted. You may not realize you did take those things for granted, at first, and that’s okay. When you’re stuck and you feel like this is it, this is really it, everything will just rush over you at once. How could you take those beautiful blue skies for granted? Or the flowers in the spring? The short walk to the store. I could keep going. The point is, we need to keep going. “Life never really ends, it just changes.” (Unknown)

I want to help others. I always want to be there for everyone around me, knowing just want to say. Family has suggestively said that maybe the medical field is where I need to be. I’ve thought about it myself, too. I went from wanting to be a veterinarian to a Pre-K teacher, to a physical therapist to a psychologist. My heart has currently been taken over by my love of marketing and advertising. I love graphic design and photography just as much and would love to put them all to good use. As you can see, I’ve taken up writing, as well. I did very poorly in all my English and literature classes, especially in high school when you couldn’t write about your cat or why your favorite color means so much to you. Simple things. I took to writing as an outlet these past few months, whenever I felt like I was going to break, when no one else would understand or know what to say. I would just write. Most days I can’t even focus my eyes on the screen. But when you have so much inside of you, so many things unsaid, the pain subsides for those few minutes. And in those few minutes, you’re also hoping you’ll be able to reach out to others who feel maybe even a sliver of what you’re experiencing. Or, maybe they won’t.

We have this chance to go out, live life and be something, anything that we choose. It may not always be easy, but just knowing we have that chance, can experience that chance…what else do you need to keep from giving up? An answer. Hope. An explanation why you were chosen to fight this disease on a daily basis. No one realizes how much you can learn by living, by not giving up. If you were given a second chance at life, not knowing whether you could be faced with yet another illness or not, wouldn’t you take that chance? I would. But I’m not going to think about the “what if’s”. I would just be happy for that moment in time, for that chance. Through both the good and the bad, we need to thank the ones that helped us get where we are today. “Hug and kiss whoever helped get you – financially, mentally, morally, emotionally – to this day. Parents, mentors, friends, teachers. If you’re too uptight to do that, at least do the old handshake thing, but I recommend a hug and a kiss. Don’t let the sun go down without saying thank you to someone, and without admitting to yourself that absolutely no one gets this far alone.” (Stephen King)

Maybe I was chosen this path to help others.

When you feel like you have nothing to hold on to, nothing left in your reach, you just need to reach a little higher or look besides you. There you will find hope, staring you right in the face.

I’ll leave you with yet another quote from the film, Awakenings:

“What we do know is that, as the chemical window closed, another awakening took place; that the human spirit is more powerful than any drug – and THAT is what needs to be nourished: with work, play, friendship, family. THESE are the things that matter. This is what we’d forgotten – the simplest things.”

Healing thoughts and prayers to all-

Kate

“Keep taking Prozac and go back to work.”

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

It’s difficult when you’re heart is in a place you physically can’t be.

If you asked me during my senior year of high school where I’d see myself in four years, I would of told you graduating from college or holding a steady job. Family and friends would have jokingly said I would’ve been married. Well, here it is, four years since high school. I’m almost 22, I haven’t gone to college, the only relationship I have is with my bed (or sometimes the couch), and I’m trying to get back on my feet again from Lyme Disease. Literally.

Sometimes Lyme Disease makes you feel like the enemy. People start avoiding you like the plague, thinking they can “catch” Lyme just by being in the same room with you. It also makes you feel like the enemy when friends and loved ones have trouble understanding and just ignore you all together. A good friend got me to crack a smile by saying “It’s not your fault, it’s the damn bacteria’s fault!”.

With any illness, you experience frustration frequently. There are times you want to scream on the top of your lungs and shout out a few obscenities while you’re at it, too. Sometimes you don’t even feel the tears rolling down your face, you’re just completely numb to everything. Friends (that is, if you have any left) and loved ones ask you what’s wrong, you start to tell them even though they won’t understand, and explode. Voices are raised, blood pressure goes up, and regret of asking you what’s wrong is all you can see in their glazed over eyes. Why must it be this difficult? I’ll tell you why–we’re only human. This is how we react, how we defend, this is how we fight. We gnaw at each other no matter what the situation, grasping for an answer that we’ll never get.

You learn a lot about yourself when you’re confined inside every day. You realize things and everything comes into focus more, in a way. Sure, you’re lost and have no idea what you future may hold even the slightest, but you think about the small, simple things in life and cherish those moments even more than before. It also makes you feel left out. Not like elementary school they-won’t-let-me-play-with-them kind of left out, the cut out from people’s lives entirely kind. You feel ignored, worthless–like you’re an item on the half price shelf that no one wants to buy. You over hear conversations, happy laughter-filled conversations and wonder why you can’t be a part of that, why they can’t include you too.

You’re going to have days where you just feel like giving up. Family and loved ones are eventually going to run out of supporting words to say to keep you from falling apart. You’ll get tired of eating because you’re just sick of feeling so sick. What happens when it feels like this is it, when it feels like this is all you have to look forward to? You hang on to something. Anything. You know that dream or goal that seems to be only getting farther and farther out of reach? You don’t let go of it. No matter what, never let go of it. “Hold on to those dreams, there the one thing they can’t take away.” (Memorial Day -Dropkick Murphys). Whether it’s to start up a hobby again you treasured so much or to go back to school, you need that to hang on to, especially when you feel like you’ve been dealt your last card. I would have graduated from college this year just like the rest of Class of 2007 did. I haven’t even had the chance to go yet. The closest I got was signing up for classes at the local community college and a couple of years later, enrolling in a university. I attended one day of classes at the community college and had to withdraw my enrollment at the university. I’m hoping the next time I try again, I’ll finally be able to conquer my dream. And you too, will try and try again, fall and get back up, and most importantly, you’ll look back on all of this and be extremely grateful for not giving up. Even though you couldn’t see it roll out as your future, you hanged on to it with something more powerful than the mind; your heart.

When change happens, everyone always says it’s for the best, a chance to start over. I’d say the same thing if it ever worked out that way, but it hasn’t yet. How do you see being seriously ill as a positive change? When you go from living your life, following your dreams to being bedridden for months, it’s quite difficult to cope with such change. Maybe it will make you see things from a different light. Maybe you’ll start appreciating life more. Never take a day of your life for granted, no matter how bad it gets. “Nobody said it would be easy, they just promised it’d be worth it.”

We WILL get the treatment we deserve.

Healing thoughts and prayers to all-

Kate