Tag Archives: rheumatoid arthritis

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

 

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

“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