Tag Archives: invisible illness

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

 

Live, Laugh, Love, Lose, Learn, Repeat.

As much as I try to stay positive about the happening current events, I guess we can call them, something always gets the best of me. I may not have my health, at the moment, but it also could be much worse. I have many blessings in my life to be thankful and grateful for and there’s not a day that goes by I don’t remember that. Still, I can’t help but feel lost, stuck, and like I’m not getting anywhere.

But that’s life, right? You take the good with the bad, the happy and the sad. Life doesn’t stop and wait for you to catch up. Life doesn’t give you half-times. It keeps going, no matter what, even if it feels like yours came to a screeching halt—life goes on. But it’s okay to feel lost. It’s okay to feel stuck. Oddly enough, it shows strength. It shows that you’ve been fighting with all that you have towards your current struggle and sometimes, you just need to take a good hard look at everything, regroup, and find your place again.

Taking it one day at a time is easier said than done. You can’t just karate kick out all the overwhelming thoughts nestling inside your head. Sure, there’s meditation, Yoga, etc.—but there’s more to calming a restless mind than that. Everyone tells you not to think about everything all at once. Like that’s going to happen. It all comes down to time. A simple four letter word, yet is so, so precious to us. The least we can do is just make it through the day. Pain free would be nice, but hey, you’re still ticking, you’re still here–and that counts for something. That counts for a lot. There are going to be days where all you do is just lie there and breathe. And sometimes, that’s going to have to be enough.

This might not be the ideal layout you pictured for yourself–loss of job, friendships, relationships, and practically being disabled. We have to live with the current situation that has been curveballed at us, laugh at the what-the-hell moments, love and spend time with our dear ones, deal with the losses, learn from and cherish every single moment, and then repeat. Life can be as simple as directions on the back of a shampoo bottle. But to experience such simplicity, we have to take our time, at our own pace. And as I always have said, you’ll get there when you get there.

So, until you get where you want to be, where you picture yourself, make a list. A bucket list. A temporary realistic, bucket list. Some people want to go sky-diving, some people just want to make the walk to their mailbox. Here’s my temporary bucket list:

. Clean/organize desk

.  Attend Sunday mass

. Plan for a friend to visit

. Play video games with my brother

. Eat more sufficient meals/snacks (Thanks to Infectiously Optimistic’s blog for the inspiration I needed!)

. Go places with my family

. Register for TurnTheCorner’s Lyme Disease walk again (It will be my second year walking. I can do this!)

. Visit my grandma more

.  Drink more water

. Try to see the good in every outcome

And with that last goal I’d like to fulfill, I will be posting something positive each day for a month. I could post a picture that I either found online that inspired me/gave me hope, a picture that I have taken and wanted to share (the pictures I have posted so far have been taken and edited by me, even my header.), or maybe I’ll write an entry or post both. The possibilities are endless and I am ready for the challenge. I know this will not only be a good exercise for me, but I’m hoping it will inspire others, as well.

No matter how many doctor appointments end with me in tears, no matter how bad the pain is, no matter how trapped I feel in my own body, there will be something better on the other side of all this. There WILL. And I’ll get there when I get there. So will YOU.

I thank you for letting me continue being your voice.

Healing thoughts and prayers to all,

Kate

“The light of love flows out of one’s soul, but often it goes nowhere because it’s blocked by pain.” -Paulo Coelho

Pain runs deep.

Pain. Whether it’s physical or emotional, there’s no precise definition for it. Go ahead and look it up in the dictionary or search for it online; no one person will be able to describe just how much pain they are in, how much pain they feel, let alone, let some source of reference dictate what pain is and how it’s supposed to feel. That’s the thing with society today. You either feel this way or you don’t.  And if you can’t explain the way you feel, then you must be crazy, right? No, you’re not, but it certainly feels like you’re being punished or toyed with when you’re told that your pain, you’re unbearable, excruciating, all over pain, is just in your head.

The pain that I have been feeling, that I have been suffering with, has delayed me from posting this entry. It also has me avoiding friends and loved ones. Being around them in pain wouldn’t be such an ordeal if I didn’t have to describe how I feel to them constantly. And then they ask things like “When do you think you’ll be feeling up to doing something”, “Are you feeling better yet?”–and the list goes on. Meanwhile, I don’t even know how I’m going to feel the very next minute. The pain I feel can be at its peak the moment I wake up in the morning or I could still be fighting it from the night before. It can get worse as the day goes on or become bearable for some time, like I’m at a stand-still; not getting any worse, not getting any better. My pain prevents me from doing the use-to-be-simple everyday tasks. My pain prevents me from getting out of bed, just barely making it to the bathroom. The pain I feel makes me feel stuck, lost, and guilty. And my pain isn’t just my pain; it’s YOUR pain or someone YOU know, someone YOU care about. The pain I feel can be different from what you feel or what someone else feels, but the point is, pain exists. My pain is real. Your pain is real. Visible or not, pain and suffering are real. Chronic pain sufferers might not have a noticeable wound or scar that is visible to the human eye, but they are suffering, that’s for sure. In silence—and we need to break that silence.

Some days, it’s easier to hide the pain than others. Some days, there’s no escaping it. You smile to pretend you’re okay until eventually, everyone can start to see through it. You use to be asked if you wanted to go to the store or if you wanted to go here or there. You become distant from everyone and everything around you. You’re still you, but you’re not at the same time. Being chronically ill, being in such pain, makes you a completely different person. You become a version of yourself you never thought you’d ever become; lost, lifeless, and stuck—when you yearn to be happy, determined, and free again. Happy to be free of these chronic chains holding you down, determined to start over, and free of negativity. Yes, you’re happy now. You have a roof over your head, a family that loves you, takes care of you, and want’s to be there for you, but you can’t help but wish things were different, wish things were easier for the ones you love so much, that they didn’t have to bear all this pain with you. But they are and instead of wishing things were easier, you need to accept how things really are. This is now. This moment is happening now— and we need to make the best of it. YOU need to make the best of it. Smile. Go out when you feel you have enough energy or just put in a movie, watch it with a loved one. It doesn’t matter if anyone can see through your smile or not. Don’t think about what anyone else may see or not see. If you feel well enough to do something, do it. If you don’t, you don’t.

Don’t feel guilty about feeling well one day and then horrible the very next. You can’t help how you feel, how you’re body feels. Your head might be thinking “Alright, let’s do this!” but your body is thinking “Must…lay…down…” and vice versa. Your body might be feeling good, you’re able to get around better than usual, but your mind is in such a rut and you just can’t snap out of the haze you’re in. Frustrating doesn’t even begin to describe how it feels. You’re at a constant war with yourself—and you just can’t seem to win. What does help is support from others, from family and loved ones, but they’re not always going to understand, just like how you don’t understand any of this, what’s happening, why you feel the way you do, at times. Whether anyone else understands or not, what matters is how YOU are feeling, what YOU feel up to doing—and don’t let anyone else’s opinions get in the way.

Pain also makes you feel disconnected, just numb to everything. Your body is screaming in pain, yet, you feel nothing at the same time. You start to feel like this is all there is, that nothing is going to be any different tomorrow or the day after that and so forth. Eventually everyone around you just loses their patience, not with you, but your illness—but you can’t help but feel like they’ve just had it with you. There’s nothing no one can say anymore and you just sound like a broken record when they ask you what’s wrong. Hurtful comments linger in your mind, but they’re not as hurtful anymore, just a numbing reminder that you’re sick. “You’re only pretending to be sick to blow me off.” “You’re just saying you don’t feel good so you can get off the phone with me.” “You’re always sick.” “The only thing that’s getting between us is you being sick.” “You’re lazy.” “You need to get out more.” “She doesn’t do anything, just stays in bed all day.” “I don’t think the old Katie is ever coming back.” – Just some of the comments that have been said. My 13-year-old brother said a few of those, but even though he’s young and doesn’t fully understand what’s going on, it still hurts because he’s my brother and I just didn’t expect him to say those things to me– but he didn’t expect me to get sick. No one did. The other comments were from friends who don’t understand. I don’t blame them and I don’t hold anything against them for saying those things. That’s how they felt, but they just never stuck around long enough to hear how I was feeling. It’s just meant to be, though, because if they truly knew how I was feeling, they’d feel bad or obligated and I don’t want them to feel like they have to be here, a part of my life, when they really don’t want to be. And as I have mentioned before, reconnecting can be both very good and very painful. You feel like a weight, just weighing everyone down. The stuck and trapped feeling intensifies. Relatives aren’t going to understand because they’re not always around and when they are it’s always; “You look great!” and “What could possibly be wrong?” Your parents already have their plates full with bills, worrying about work, family, and now you being sick. You sit at the dinner table, wanting to say something, wanting to laugh along with everyone, but you just can’t. You’re frozen. You can’t say anything, can’t feel any kind of emotion. It’s like you’re not even in the same room. You tell them how you feel and it’s only right for them to say how they’re feeling back, even though they don’t mean anything by it or the tone of their voice. All of this is a lot. It’s a lot to take in. You feel the way you do because you can’t help it. You’re hurting physically and emotionally. And you’re just trying to bear them both, one day at a time.

Does it get better? Yes, yes it does. Even though the support of others is crucial during all of this, you need to offer support to yourself, be there for yourself. No one is always going to be there when you need them, when you need to hear their voice, to hear it’s all going to be okay. Friends and loved ones don’t know what else to say, so of course they’re going to tell you everything is going to be okay, but you’re only going to believe it if YOU know it’s true. So, believe it. Tell yourself it’s going to be okay. It might not be okay right now or tomorrow, or the next day after that, but it WILL be okay. Even if it feels like you’re just wasting your breath, say it. Say it, say it, SAY IT.

Pain also leaves you with nothing to say. You feel all these emotions and physical aches all at once, all the time, there’s going to come a time where you just become drained. Drained from everything just bearing down on you, feeling like you just can’t catch your breath, catch a break. You don’t want to be seen or thought of as someone who is always sick, someone who just stays in bed all day. You don’t want anyone to remember you that way. I don’t want to be remembered that way—it’s just hard being the girl, being that someone, that was always there for everyone else. You just can’t help but hope and wish that they’d be there to catch you one day, like you were always there for them. But they feel like they lost you too.

You may feel like you have no one, but you have you. You can’t lose you, you can’t give up on you because what will you have left? Nothing. No one can fight for you except yourself. Never, ever give up.

Healing thoughts and prayers to all-

Kate

**Sending love and strength to all our troops, past and present, as well as to their beloved families. They should not just be thought of on Veterans Day, but always. Not many stop and think about any of the men or women supporting us and this country about what they or their family may be personally battling with. We salute you. God Bless.**

As Invisible Illness Week comes to a close, I WILL continue and NEVER stop being YOUR voice.

Again, I’m late posting for Invisible Illness week. I would have liked to have had a few new posts up, but as I have learned with Lyme Disease and with any chronic illness, you just have to accept what you can manage. Sure, any blog postings during this week helps. Every ounce of awareness is appreciated, supported, to just unite together, to be become one voice in these illnesses that we’ve been faced with, alone and without answers.

Not too long ago, I wrote in to a favorite magazine of mine about Lyme Disease and Lyme-Induced Autism. No one believes it’s possible, but boy, are they wrong. The magazine had an article on just Autism and what they believe is causing it. My response was never posted, unfortunately, but I wasn’t surprised. It’s just “too controversial” these days to speak out, to have a voice about a disease that deserves so much more dedicated research, so much more awareness about how truly life changing these illnesses are. Since I was so hyped up on writing in about an illness that is always just constantly pushed to the side (it matters how close you live to a free-way, what you eat, etc—NO, there are many more factors that are unknowingly contributing, as well), little did I know that there was an article dedicated just on Lyme Disease. So, you’d think my response would of been shared with readers, because I wasn’t just talking about one issue that millions of children and adults are facing every day, I also included another life changing illness, Lyme Disease, that mimics Autism-like symptoms–and how both of them deserve the respect and awareness of any other chronic illness, invisible or NOT. And if my words are not enough: http://www.ilads.org/lyme_research/lyme_articles1.html

I went to a Lyme Disease seminar back in May of this year and that is where I found myself just sitting there anxiously, fidgeting non-stop, wondering how doctors can be so naïve to all these signs and symptoms. Yes, Lyme can be passed through to the fetus from the mother and if that newborn has the Autism trait as well, it can be born with both Lyme Disease and Autism, classifying it as Lyme-Induced Autism. Lyme Disease already mimics Autism-like symptoms as it is and many, many other chronic illnesses symptoms. I mention just SOME in an earlier posting. Lyme Disease can cause so much havoc on our bodies, and not just with the disease/infection itself, but also with co-infections (Babesia, Bartonella, and Ehrlichia, just to name a few). Again, no one would suspect you’d have them or know what you’re talking about when telling them what you’re being treated for. Lyme Disease is one thing, but a co-infection? Not too long ago, Babesia was trending on Yahoo because of how it’s being passed through blood transfusions without blood donors being aware that they’re carrying it. That just goes to show how we are in dire need of accurate testing, in desperate need of more doctors understanding this disease, Lyme Literate or not, to stop putting so many innocent lives in jeopardy. We also need insurance companies to cover treatments and get these money hungry doctors to ACCEPT insurance. You become a doctor to save lives, not to turn patients away and drain every single penny out of them —but for some, the whole doctor status goes to their head; literally (fancy cars, perks, etc.)—and they’ll label you just like a package of meat at the grocers market. You’re just that hopeless to them. For further information on co-infections: http://www.lymedisease.org/lyme101/coinfections/coinfection.html

I also wrote in to a popular morning talk show. They had a doctor on this particular segment and were talking about summer safety, etc. I know it’s just a talk show and most hosts just love to hear themselves talk, no matter what they may be discussing or pretending to show concern about, but when something is taken lightly and almost as a joke, I WILL say something. I WILL stand for anything. The particular remarks that were being said made my skin boil, especially when the female host sarcastically said, “you might want to call your husband to help check” when discussing where to check your kids for ticks. As I said in an e-mail that I sent through the show’s site (never heard back, of course), Lyme Disease is NOT a laughing matter and should not be taken lightly. Yes, you need to check in places you’d never think to look. With that being said, no illness is a laughing matter. Unfortunately, there are many people and doctors that are just completely unaware of this disease and don’t even believe it exists, especially Chronic Lyme Disease, which is REAL. I’m living proof and I’m trying my hardest to not let this disease get the best of me. And I need to remind myself it’s not my fault I’m sick. It’s not our fault that WE are so ill. If only we were diagnosed correctly the first time. If only Lyme Disease was taken as seriously as every other illness—again, invisible or NOT.

We are surrounded by chronic illnesses, invisible to the human eye or not, in treatment or not, we’re all silently suffering–and we need a voice. Blogging for Invisible Illness week together is one way, another way is to always speak up, always voice your opinion, stand your ground, in a blog post, at a seminar, even to someone on the street—do not be afraid to use your voice. The more people that are aware of these chronic, debilitating invisible illnesses, the better. Unfortunately, with the research and awareness that we have been doing and creating is just not enough—I’m not saying it isn’t helping—but it’s just not enough. We can’t just assume the whole world is going to have a light bulb moment just like in the cartoons. Invisible to the eye or not, we all truly deserve to get the best care that we can–and we WILL. Whether it’s Depression, Anemia, Cancer, Autism, Asperger’s, Crohn’s Disease, Lupus, Fibromyalgia, Arthritis/Rheumatoid Arthritis, IBS, Diabetes, MS, Bipolar disorder, and other psychiatric/personality disorders. And that’s just SOME of what this world is so helplessly suffering with silently and in the dark.

As for me, it’s just been battle after battle, one thing after another. The bouts of depression get worse as it does for anyone suffering with such a chronic, too often misdiagnosed illness. You can’t stomach your medication, you feel sick constantly, you’re continuously dropping weight as the weeks go by, you can’t move out of bed, except for somehow being able to get just even the slightest bit of energy to make it to a doctor’s appointment, in hopes of some kind of answer, a different answer than the one you got 15-20 doctors ago. Sure, my struggles may matter to some, but what really matters to me is if I can be someone’s voice, someone else’s voice—just to let them know that they’re not alone in this, that we’ll get the awareness and treatment we deserve, together. And I’ll never stop using my voice, I’ll never stop speaking out—for you, for us, for everyone. I’ll be that voice.

We are able to control time, to control this moment in time, whether you believe it or not. Making the best of things is part of it. Living in the moment, living like there’s no tomorrow, just being thankful that you have come so far—and then there’s choosing who you’re going to be spending that precious time with. Because when you are surrounded by loved ones, when you have someone in your life that makes your dark days sunny, it just makes you feel that much better about everything. You feel worth it. You feel your time fighting whatever illness you may be struggling with, is worth it. And nothing and no one can get in your way–because you have FAITH. You have HOPE. You have LOVE. And you’re NOT alone. Keep on fighting your fight. Hold on to your dreams. You’ll get there when you get there. You have no expiration date, no matter how sick you are or feel.

As always, healing thoughts and prayers to all-

Kate

Blog for a cause: Invisible Illness Week

I know I’m a little late, but I am working on some posts for Invisible Illness week. I might not be able to go out into the world and make a physical difference, but I will do anything in my power to make a difference with my words. Keep fighting your fight. It doesn’t matter what you have been faced with–just know and never forget, that you are NOT alone.

Blog for you, blog for a loved one, blog for hope.

Healing thoughts and prayers to all-

Kate