Tag Archives: IBS

I’m still me.

I’m still my father’s little girl, my mother’s best friend and my brother’s sister. I’m still your cousin, your niece and your granddaughter. I’m still the friend that will make you laugh and the friend that will always be there. I’m still the girl you can talk to about anything, the girl who will cry with you and tell you it’s going to be alright. I’m still the friend you can call up out of the blue and pick up right where we left off. I’m still the girl who will stick up for you, remind you of your strengths and tell you how much you matter. I’m still the friend that will always try and make everything okay, the friend that will gladly go out of their way for you and who will always try to make you smile. I’m still the friend who will always care about you, the friend you did everything with and the friend you considered a sister.

 

I’m still her.

 

I’m still me.

 

I’m the girl that hasn’t given up, the girl that battles Lyme Disease every single day and the girl who won’t go down without a fight. I’m the friend that is mostly confined to her bed, the friend who can’t help how she feels and the friend that doesn’t mean to keep losing touch. I’m the girl who just wants someone to love her through the good days and the bad days, the girl who is tired of being defined by others because of her illness and the girl who just wants to feel better again.

 

I may be her, but I’m still me.

 

 

Healing thoughts and prayers to all,

Kate

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“I didn’t come this far to only come this far.”

My name is Kate. I’m 26, 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 after fighting Lyme Disease for most of my life.

Some of that may sound familiar since I originally wrote it in an earlier post back when I first started this blog. I wish my absence meant I’ve only been improving but, that’s unfortunately not the case. In the posts-to-come, I’ll be sure to update you on my continuous fight with Lyme and all the difficulties you must face dealing with a chronic illness such as the loss of friendships, relationships, independence and how many, many, many of us are not giving ourselves the credit we truly do deserve. We’re still fighting, we’re still here. That means something, right?

Most don’t have a clue what someone with a chronic illness goes through on a daily basis. We can’t help it if we can’t make it out of bed most days, are unable to eat, think clearly, hold a conversation, move without wincing in pain, always needing the bathroom, not feeling up to getting out of the house, glued to our heating pad, need the room dark because of a terrible migraine, so nauseous you can’t even speak, curled up in a ball because of intense stomach pain, hit the point of exhaustion where you just can’t keep your eyes open–and much more.

For those of you not familiar with my blog, it’s about how Lyme Disease both takes time from you as well as takes time to recover from. You can also expect posts about some of my favorite recipes as well as products I enjoy. I do take the time to share experiences on how numerous doctor appointments left me in tears, to friends and relatives not being able to understand. I know there is someone, somewhere who has yet to be diagnosed or recently was and honestly can’t find themselves more lost just as I once was. I still find myself lost a great deal of the time, but as the title of this post states, “I didn’t come this far to only come this far.” As I continue giving this fight my all, you can count on me being your voice as well as bringing much needed awareness to this truly controversial disease that continues to wreak havoc on so many lives each and every day.

 

You’re not alone.

 

“Strength grows in moments when you think you can’t go on but you keep going anyway.”

 

Healing thoughts and prayers to all,

 

Kate

 

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.

“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