Tag Archives: MS

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-