10 YEARS

2016Even if you are struggling to find the tiniest ounce of happiness right now, please know you are loved and you are important in this world. Do not give up no matter what. It has officially been ten years since the beginning of my quest to find answers and receive a diagnosis living with this disease. This is my first post in almost an entire year which is absolutely crazy to think I waited this long. I am currently editing all entries on my Lyme page and hope to have everything updated as soon as possible. I found this picture from three years ago and I never thought I would make it this far. I do believe remission is possible and I continue to keep moving forward with a positive attitude. After six years of wearing knee braces I was finally able to say good riddance to them. I am still in the process of baby steps in regards to where I need to be physically and have quite a journey ahead. However, despite all the stress that comes along every single day living with a chronic illness and being in constant pain, I have a brighter outlook when it comes to thinking of the future. Since moving away, I was blessed to meet an amazing woman who literally saved my life without me even realizing it. She took care of me for nearly two years and helped rehabilitate me. She made me stronger mentally, physically and emotionally. I am eternally grateful for her presence and I will always be reminded of how one person can drastically alter your entire existence. I can honestly admit that in the past I was toxic. I was cynical and only thought from a negative aspect; never believing anything positive. I am not the same person I was even a few months ago and I am so proud of how far I have been able to push myself. It is an ongoing process of retraining your brain after being on so many drastic remedies for such a long period of time. However, I am willing to keep fighting. I am still figuring out who I am as an individual and who I want to become. I randomly decided to write tonight because you never know what is waiting for you in life and I may not get a chance to do it tomorrow. My goal for now is to post as frequently as I can until my health is a little more stable. Thank you for still being supportive of my ongoing effort to grow and share my experience living with Chronic Lyme disease. I truly appreciate all of you.

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INSIDE MY MIND – 4

Life is so much easier when you want to die; when you crave the idea of suicide. It is when you decide to stop simply existing and actually start living – that is when reality hits and it becomes insanely difficult. I want to live again. I am tired of being sick. I will continue to move forward with hope and love in my life. I am extremely grateful for the people who remained by my side through some of the most difficult moments in the past and who continue to show support with positivity as I battle daily with unbearable symptoms. From the bottom of my heart I appreciate you.

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INSIDE MY MIND – 3

I realize that even the people who are closest to you may never fully grasp the range of limitations this disease will put on you every single day. They may never comprehend what it is like to experience such extreme levels of insomnia to the point you are literally unable to function as a normal human being. It is not self-pity when you break down out of nowhere and realize the tears won’t stop streaming down your face. You have been holding it in, thinking positive thoughts when it suddenly hits you. The fact there is no cure and all you want is to have a life again. The kind you had before this disease destroyed you nearly a decade ago. Not everyone gets it. You have been fighting for so long that it’s difficult to see yourself healthy again. Sometimes you put on such a brave face to mask the pain when all you want to do is give up or run away.

Thinking positive thoughts can only get you so far in life. Trust me it takes extreme discipline. It is definitely not an easy task to try to keep up with on a daily basis. At least now I put in effort and at this moment that is all that matters.

There may be no cure, yet I do know there is always hope for remission. I will continue with my treatments and keep hoping for the best in the near future.

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INSIDE MY MIND – 2

I am exhausted trying to make other people happy when I need to focus on my health and what truly makes me happy. I know that may sound selfish but at this point I am done always being there for the ones who are never there for me. It literally drains me when people take advantage and I am sick of all the negativity. I am looking forward to starting a new life. It will not be easy and I am extremely excited to see how much I can push my body and make it stronger every single day from here moving forward.

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INSIDE MY MIND – 1

Every single day since my last post I have stared at my computer wondering when I would get a chance to write again. Truthfully, since I began telling my story I think I only wrote one post that actually had to do with what my mind was telling me. Since it is a challenge to even do simple tasks at times I know I need to challenge myself to share more. The sad part is I have not been able to do the amount of writing I would love to due to the severity of the symptoms. Over these past years even with all I have been through, both physically and mentally, some days I still struggle to keep my mind healthy. Now in 2018 I do have better days than I did years ago, yet in other aspects, they are exactly the same. I can barely get this one task done because of all the spots I am seeing right now and all the words keep blurring together. Simply put; some people will never understand you! They will never understand what you are going through or have been through unless they experience it themselves. Even the people closest to me do not comprehend how I could be so sick but look the way I do. Well, I have to say I really do not look that great right now. Only two months ago my weight was in the 80’s and I looked disgusting. My face was sunken in and I honestly had no idea what the bizarre cause of it was. It was such a dramatic weight loss and transformation that to this day, we (my family, friends and doctors) are all still utterly baffled by what happened. At that point I was so unhealthy looking that others really thought I had a serious eating disorder. I never have and never will so NO it is not that! Right now I am very pleased to have at least made some progress towards gaining weight and now weigh in the 90’s! I did not even weigh that little when I was in high school and here I am almost 20 years later and look like a 12 year old. I cannot make this stuff up. So from now on instead of simply informing people about a disease that half the people you talk to don’t believe in anyway, I am going to start writing the thoughts inside my mind.

Lately, I have been thinking about life. The only thing that has kept me alive throughout this entire ordeal is the thought that I cannot let my family down. Family is literally everything to me. Friends come and go but the true ones stay. The horrible part of this disease is yes, you will lose your friends and possibly even family members. Not everyone will believe you if they have not seen you and even if they have seen you, some will still never ever believe you! It does not matter. Focus on something that makes YOU HAPPY. This disease is a lifelong battle if you do not catch it in time and treat it in time. No I am never giving out medical advice, this is just how I personally feel. I have been struggling for a very long time due to this particular disease which manifests inside of me. I am not going to lie. This disease is horrifying and makes you feel so alone at times. It destroys you from the inside out. I even see changes in my face that I cannot believe are happening and don’t even know how to stop all this insanity. I really do not know when all this will eventually end. It may be something I have to deal with for the rest of my life. I try to control what is going to happen to me when everything can change within seconds. I use writing as therapy and I am terrified that my therapy is now causing me more problems. My right hand is starting to cramp up more and more often and both arms will suddenly feel tingly and numb. These new symptoms along with my vision problems are keeping me from what makes me truly happy which is writing. I still refuse to give up even on the worst days. I just tend to use this as my outlet in order to vent about a severely overlooked and under examined disease that completely took over and destroyed my life overnight. It was that instant. One day I was a healthy and beautiful person and the next I was simply a shell of who I used to be. I still exist, but only a part of me does now.

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2 YEARS LATER IN A DIFFERENT WORLD

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Writing seems foreign to me now. However, I am going to write today even as my right hand cramps up and my vision blurs every single word together. It has been two years, which is far too long, since I made my last post. My driving force lately is to continue living my life and learn how to smile through the pain. I currently exist in a different area of the country due to the severity of my symptoms. The people who know me personally, have known my ongoing struggle with insomnia which began in 2013. In 2016, right after my last post on here, I experienced the worst of the worst when my insomnia lasted an entirety of five nights in a row. Finally on day six, the insomnia resulted in sequential grand mal seizures. This forced my family to make the executive decision to move where I have access to the correct resources in order to receive the proper treatment for my conditions. It may have taken years to finally be in a place of peace in order to find people who do care and know that what I feel is not all inside of my head. Mental health is equally important and plays a major role in how one handles living with an invisible illness. One example is the poem I wrote expressing how alone I felt in the world even knowing I was not alone. This disease can progress extremely rapidly to where one day you wake up and do not even recognize yourself in the mirror. I felt as if no one could relate to me and I would be alone for the rest of my life. I never want anyone else to feel the way I did at that point in my life. Please know there is hope no matter what. Years ago I was completely bedridden and recently informed that if I stayed that way I would have passed away. I had no idea that it could have that much of an impact on your overall health. I have learned over the years to count my blessings and to not take a day for granted because it may be my last. After moving away I am grateful for the ones who did stay by my side throughout this entire ordeal that has literally taken years away from my youth. Previously I mentioned in one of my posts how important your support system is with such a complex condition. I now know exactly who remained in my support system and who did not. My life as I knew it stopped in my mid 20’s and nine years later I am finally waking up to say enough is enough. When I say nine years later, I am referring to the two years I searched for answers prior to the first time I received a diagnosis in 2011. This particular illness can morph into others including autoimmune disorders such as lupus and other rare conditions. After yet another diagnosis, I refuse to be stuck in one place for the rest of my life. There is still a new symptom every single week and this year is going to be another fight for my life. From day to day it is always something. It is a mental, physical and emotional roller coaster. I had to make major life changes for myself and my health in order to think properly and keep pushing forward even when days seem hopeless. I noticed on my “good” days I have a more positive mental attitude and on my horrible days I do not even want to face the world. Thankfully I do know there is help out there if you find the right people who are actually willing to listen. All I hope for in the future is the chance to lead a normal life and to hopefully be able to drive around blaring my heavy metal music I miss so much. Yes it is another long road ahead and this girl is not giving up anytime soon!

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LYMIES…CAN WE ALL PREDICT WEATHER CHANGES?

imageI am still amazed by the vast amount of people who continue to believe Lyme disease does not exist at all. Then there are others who do believe it is real, yet simply refuse to acknowledge how detrimental it is and tend to consider the notion that it can be cured in six weeks.

Well for me this is year seven living with Chronic Lyme (correctly diagnosed five years ago) and despite the number of times I have tried to explain to people how this disease affects me; it does not matter.

Unless someone is going through what you are experiencing they will never truly understand how much you are suffering. Regardless how often you prove the physical symptoms are caused by this horrific illness there will always be people who will continue to doubt what they do not believe in.  What is even more disturbing is the fact there is no way to validate to the many skeptics out there, that this disease does in fact exist and that symptoms for certain individuals are neurological as well. That is why it is also considered an invisible illness.

I have yet to meet anyone who had severe head pressure as their first major symptom. I can remember 2011 as if it were yesterday when the worst feeling I could possibly imagine completely took over my life. I tried to explain to family and friends these were not the usual headaches or migraines that I used to get when I was misdiagnosed years before. This was something completely different and the only way I knew how to describe the pain was by saying it felt like my brain was crushed in a vise 24/7. Since the beginning of my search for answers, doctors found lesions, fluid and an infection on my brain which all of them combined prevents me from traveling by plane.


One symptom in particular continues to plague both my body and mind; keeping me bedridden days at a time. Even if it is clear skies and sunny outside, I will know if it is going to rain within a few minutes of waking up.   

If it is not raining at that moment, I can feel the pressure in my head and ears becoming worse as the day goes on.

This is the number one sign it is going to rain that very day or I can guarantee the forecast for the week will include rain. If it is raining, I am stuck in bed. If it is going to rain that evening, I am already trapped in bed all day. The immense pressure in my head is so debilitating that if I try to lean down to pick something up, I can only stay that way for approximately three seconds before I start smelling chlorine and feel like my head is about to explode. For unknown reasons, particularly on stormy days, I smell blood the entire time. It is absolutely disgusting and if anyone reads this and has this same symptom please message me!!

Any type of weather change will put me under the weather as well. Even if the temperature drops only 10-15 degrees I will be in bed. I have heard people with Chronic Lyme also have ailments which tend to flare up when there is a full moon. This is something I am going to start keeping track of and see if my symptoms like so many others out there become worse around that time. I personally dread climate changes of any kind as they contribute to more pain and even more time spent in bed.   

**Credit to the amazing artwork created by artist DeLawrence Washington jr. who transformed this photo of me to help promote Lyme awareness!!**
“Lyme Disease Awareness © 2016 DeLawrence Washington jr.”

The link below will direct you to where he posts his artwork:
https://www.talenthouse.com/delawrence-washington0

The link below will direct you to where he sells his artwork:
http://www.artpal.com/Dwj2

 

Posted in chronic fatigue syndrome, chronic lyme disease, Disease, facts, fibromyalgia, Health, Illness, lyme disease, lymies, my story, symptoms, writing | Tagged , , , , , , , , , , , , , , , , , | 8 Comments