Last year on this day, February 3rd 2015, I had the placement of my hickman catheter. The six months that followed were some of the toughest days I've ever had. Today is a day for me to reflect on how far I've come, and to use those memories to propel me forward into the next phase of my current treatment plan.
I feel this blog has a trending theme of me saying "I'm starting a new treatment.." or "My new protocol includes.." I get it, I repeat myself a lot. But honestly, that's what Lyme treatment entails- repetition. For this post I decided that I will share the details of my treatment protocol. Many people have asked for the specifics of my treatment so this will include everything. Please note that I am not a doctor, and this information is not to be used for any form of self treatment. You MUST consult/be under the care of a licensed medical professional. This protocol may or may not work for you as everyone's bodies are unique. Again, do not take this as advice. I am simply sharing what my doctor has personalized for me.
For diagnosis, my doctor uses European Biological Medicine (aka Alternative Medicine) in conjunction with western medicine. Using diagnostic tools (stated in the following paragraph), we have identified the types of toxins in my body, (heavy metals, pesticides, etc) nutrient deficiencies, as well as disturbances in organ function/tissue that may effect psychological function.
The diagnostic tools used to determine all of this are called Autonomic Response Testing (ART) and ACMOS Testing. ART uses muscle response testing alongside autonomic nervous system research. ART is done by demonstrating more than one neurological test to assess most illness, and disorders of the automatic nervous system. ACMOS combines ancient traditional medicine with todays modern science research. This method uses energetic qualities to determine the pathological condition of a patient. In essence, my body was able to communicate through frequencies which medications, dosage, frequency and duration I need for healing. This is how I received my personalized treatment plan. If you'd like to read more about ART or ACMOS there are many resources online to do so.
The first phase of this protocol is the "Detoxification Phase." The purpose of this is to rid your body of toxins while giving it the nutrients you need to perform body functions well.
Detoxification Homepathics-
Soluna Drops from Germany which include Hepatik, Lymphatik, Renalin, and Cerebretik.
Pleomorphic: Pleo Pef
Nutrient Suppments-
Biofilm Detox
Bio Pure Core
HMF Forte
Vit D3
Mitochondrial Opt.
Optimized Folate
Peony Immune
Neuro Mag Caps
Adrenal Energy
Chlorella
Trifortify
Other:
Corpus Collosum (200k): Supports brain function, homeopathic
BEG Nasal Spray
AMPHO B Nasal Spray: These sprays address mold in the body, and other persistent bacteria in the nose known as MARCONS
Procedures for Detoxification-
Neural Therapy for scar on chest from Hickman: 6 treatments
IV Detox Push: 6 treatments
Auto Blood: 10 treatments. Blood is taken from arm and injected in the butt-cheek. This is to redirect auto immunity issues. In my case, my immune system attacks my brain, thyroid and joints. This is used to treat that.
After the toxicity levels went down in my body, I started Biltricide, an anti-parasitic medication. If parasites are not eliminated before treating Lyme infection- you may not see improvement. Parasites work in conjunction with the Lyme and create a very resistant bacteria, making it harder to kill off.
Eliminating Infection is the final part. I start this on February 16th.
IV Silver: 10 treatments at 300ml
Diet (low sugar, low modified starch), therapy, and structural work are also recommended to aid any type of physical healing. I also do not eat meat, and exercise about five times a week. These are both personal preferences.
The hope is that after these 10 weeks I will be infection free and in remission from Lyme and all the co-infections. There is a possibility that I will need more IV Silver treatments or more detox procedures. Nothing is guaranteed and everything is to be taken one step at a time. This being the most comprehensive plan I've ever been on, I'm ready to move on! My purpose for writing has always been to help, wether that be to someone who doesn't have lyme, and comes out out with a different perspective, or those recently diagnosed or struggling for years. I hope this provided insight either way.
-Dani
Feb 3, 2016
Nov 14, 2015
White Space
I opened up my web browser, clicked my way through websites, and came to a new composition. There's a blank white space. The more words I type, the smaller that space becomes. That's kind of how life works, right? The more you work towards something, the less you have to complete. Where there is emptiness, there's something to fill it. For every action, there is a reaction. Well, what happens when you keep typing, and the white space stays the same? No matter how many words you add, no matter how fast you type, the volume remains. The white spaces keep adding and adding.
That frustration easily translates to my current situation. I've been laboriously fighting to get rid of Lyme. All the treatments, the money, the needles, the months that fly by, and the infection still remains. No matter how many protocols I did, the white space never fully went away. The infection would add. Little did I know, there was more than I thought preventing me from being 100% well.
After doing the Cowden Protocol for about a month with little progress, my headaches became too intense for me to continue. I went to see an alternative medicine doctor that someone special recommended to me. After explaining my symptoms and reciting "my story", I waited five days until my test results came back. He handed me a paper, with a lot of words, and very little white space. My eyes were instantly fixated to the list that read Bacteria. Moving to the right, my brain processed the words Borrelia, Bartonella, Ehrlichia, Mycoplasma, Babesia. I said to myself "What? Really? Me?" I always knew I had Borrelia and Babesia. But for the past four years, countless doctors and tests- no one could figure out I had three other infections ripping through my body? I felt anger, resentment towards past doctors, and a pit in my stomach. My doctor redirected my attention by going over other things the test picked up on and what we can do to potentially fix this. I left the office feeling like a heavy weight was on my shoulders, and that feeling hasn't gone away since.
Though, I am recently feeling somewhat recharged. I feel ready to tackle these other nasty co-infections and reclaim my body. I sound like a broken record, but I'm starting a new treatment protocol specially designed for my body. The first phase is detoxing, which is a lot harder than it sounds. Not only do we detox toxins and junk in our bodies, we detox emotions. I've never experienced anything like it before, but that makes me hopeful that things will be different this time.
In a somewhat positive light, my symptoms seem to have shifted. While I am still moderately fatigued, I'm able to push myself to go to the gym for the past two months.This has been a very uplifting victory for me and has given me a small sense of normalcy. The flip side of that is dealing with great neurological impairments on a daily basis. I'm grateful for the progress that I've made and anticipate it to continue. There's one line in a previous blog post from a couple years ago that resinates with me now more than ever, "Infections may be persistent, but so am I."
-Dani
That frustration easily translates to my current situation. I've been laboriously fighting to get rid of Lyme. All the treatments, the money, the needles, the months that fly by, and the infection still remains. No matter how many protocols I did, the white space never fully went away. The infection would add. Little did I know, there was more than I thought preventing me from being 100% well.
After doing the Cowden Protocol for about a month with little progress, my headaches became too intense for me to continue. I went to see an alternative medicine doctor that someone special recommended to me. After explaining my symptoms and reciting "my story", I waited five days until my test results came back. He handed me a paper, with a lot of words, and very little white space. My eyes were instantly fixated to the list that read Bacteria. Moving to the right, my brain processed the words Borrelia, Bartonella, Ehrlichia, Mycoplasma, Babesia. I said to myself "What? Really? Me?" I always knew I had Borrelia and Babesia. But for the past four years, countless doctors and tests- no one could figure out I had three other infections ripping through my body? I felt anger, resentment towards past doctors, and a pit in my stomach. My doctor redirected my attention by going over other things the test picked up on and what we can do to potentially fix this. I left the office feeling like a heavy weight was on my shoulders, and that feeling hasn't gone away since.
Though, I am recently feeling somewhat recharged. I feel ready to tackle these other nasty co-infections and reclaim my body. I sound like a broken record, but I'm starting a new treatment protocol specially designed for my body. The first phase is detoxing, which is a lot harder than it sounds. Not only do we detox toxins and junk in our bodies, we detox emotions. I've never experienced anything like it before, but that makes me hopeful that things will be different this time.
In a somewhat positive light, my symptoms seem to have shifted. While I am still moderately fatigued, I'm able to push myself to go to the gym for the past two months.This has been a very uplifting victory for me and has given me a small sense of normalcy. The flip side of that is dealing with great neurological impairments on a daily basis. I'm grateful for the progress that I've made and anticipate it to continue. There's one line in a previous blog post from a couple years ago that resinates with me now more than ever, "Infections may be persistent, but so am I."
-Dani
Aug 14, 2015
The Next Phase
Those faced with every day tasks such as going to school, working, errands, taking care of families, etc, do not always have the opportunity to reflect. As a Lyme patient, I find myself reflecting every day. Some days, the aching in my muscles is an impolite expression of how far I still have to go in this journey. The often barren state of my mind when looking at the text of a book is a reminder of what I've lost. Other days, the veil of lethargy and fatigue is lifted by sparks of vitality.
Recently, complacency is a returning feeling I've been experiencing. I've been doing Intravenous Antibiotic Therapy for seven months now. I've grown somewhat content with the current state of my health. I found myself saying things like "Oops, I missed a dose of my meds today, oh well.." and "I could function like this for the rest of my life, I guess." The desire to push my health to its best has been slipping. This all had me thinking, maybe my body is telling me something is wrong. Intuitively I felt like I wasn't in a good place. I connected this back with the treatment I've been doing. Antibiotics, especially intravenously, are extremely hard on your body. It not only kills the bad bacteria, but it also robs you of good bacteria in your stomach. Overall, I've been feeling depleted. It's hard to say if some of these physical and emotional feelings come from the disease itself, or if some of it is a side effect of antibiotics. During my fifth month of treatment I did see some improvement, which tells me that antibiotics were what I needed at one point. After feeling like I've hit a plateau, I decided that it's time for the next phase.
I want to try something new, and something I've never done before. The holistic/natural approach to treating always interested me. I started doing some research, and I came across The Cowden Protocol by Dr. Lee Cowden. The Cowden Support Program uses 13 different herbal drops taken rotationally during the course of six months. All of these 13 products have different uses, which are mainly microbial defense, detoxing, and cleansing. After reading about other peoples experiences, studies and different statistic improvement/success rates, I resolved that this is what I want to do. I shared this information with my doctor. He told me, like anything else with lyme treatment, it could work but won't know until you try.
A large aspect that pushed me towards shifting my treatment were the finances. I was awarded an extremely generous grant back in May, from the LymeLight Foundation. This greatly helped me afford eleven weeks of treatment. I had hoped that money would last me until I reached remission, but unfortunately that wasn't the case. IV's are one of, if not the most, expensive means of treatment. Since I wasn't feeling much relief anymore, the cost and hassle were no longer outweighed by the benefit.
I am excited to have a new, clean start. I'm even more excited that next week I am getting my Hickman Catheter removed from my chest! I could write an entire post about what it's like to live with a port in your chest every single day for seven months, though I'm not sure how enjoyable that would be for anyone.
I believe that going into a new treatment with a positive attitude is the first step towards success. Day by day, and piece by piece, I'm learning how to be more in touch with my body and to really listen to what it's telling me. I'm proud of my decision and can't wait to get started!
Some pictures from the past couple months:
First dose of Merrem and a weekly dressing change at my doctors office
My dog Ziggy always makes me feel better after infusing
Recently, complacency is a returning feeling I've been experiencing. I've been doing Intravenous Antibiotic Therapy for seven months now. I've grown somewhat content with the current state of my health. I found myself saying things like "Oops, I missed a dose of my meds today, oh well.." and "I could function like this for the rest of my life, I guess." The desire to push my health to its best has been slipping. This all had me thinking, maybe my body is telling me something is wrong. Intuitively I felt like I wasn't in a good place. I connected this back with the treatment I've been doing. Antibiotics, especially intravenously, are extremely hard on your body. It not only kills the bad bacteria, but it also robs you of good bacteria in your stomach. Overall, I've been feeling depleted. It's hard to say if some of these physical and emotional feelings come from the disease itself, or if some of it is a side effect of antibiotics. During my fifth month of treatment I did see some improvement, which tells me that antibiotics were what I needed at one point. After feeling like I've hit a plateau, I decided that it's time for the next phase.
I want to try something new, and something I've never done before. The holistic/natural approach to treating always interested me. I started doing some research, and I came across The Cowden Protocol by Dr. Lee Cowden. The Cowden Support Program uses 13 different herbal drops taken rotationally during the course of six months. All of these 13 products have different uses, which are mainly microbial defense, detoxing, and cleansing. After reading about other peoples experiences, studies and different statistic improvement/success rates, I resolved that this is what I want to do. I shared this information with my doctor. He told me, like anything else with lyme treatment, it could work but won't know until you try.
A large aspect that pushed me towards shifting my treatment were the finances. I was awarded an extremely generous grant back in May, from the LymeLight Foundation. This greatly helped me afford eleven weeks of treatment. I had hoped that money would last me until I reached remission, but unfortunately that wasn't the case. IV's are one of, if not the most, expensive means of treatment. Since I wasn't feeling much relief anymore, the cost and hassle were no longer outweighed by the benefit.
I am excited to have a new, clean start. I'm even more excited that next week I am getting my Hickman Catheter removed from my chest! I could write an entire post about what it's like to live with a port in your chest every single day for seven months, though I'm not sure how enjoyable that would be for anyone.
I believe that going into a new treatment with a positive attitude is the first step towards success. Day by day, and piece by piece, I'm learning how to be more in touch with my body and to really listen to what it's telling me. I'm proud of my decision and can't wait to get started!
Some pictures from the past couple months:
First dose of Merrem and a weekly dressing change at my doctors office
My dog Ziggy always makes me feel better after infusing
Glutathione Push
May 28, 2015
Empathy
"Empaths are highly sensitive, finely tuned instruments when it comes to emotions. They feel everything, sometimes to an extreme, and are less apt to intellectualize feelings. Intuition is the filter through which they experience the world."
Being someone who has had their fair share of physical aliments, I think I grew accustomed to pushing away emotional aspects of who I am as an individual. Throughout my years in school, teachers would compliment me, saying that my intuitive knowledge and sensitivity will bring me great success throughout life. I never understood how being sensitive was a positive thing. I thought being strong and putting on a tough face was more admirable.
Highly sensitive people seem to receive a negative dictation. They're perceived as weak. I think the people who are not expressing their authentic feelings show more signs of fragility. To feel intensity in any form isn't a symptom of a weak person, it is what makes us feel truly alive. There's no shame in the things we aspire and dream of. These things need to be cultivated in order to work towards a more humane, caring world.
I do not consider myself a religious person. I never felt like the ideologies of most religions aligned with me, and having a hard time getting behind something that I don't feel one hundred percent confident in, I was never a very devout catholic. At a young age I went to religious instruction for a few weeks over the summer. I remember feeling like I didn't fit in and that I was very different. I was quiet, kept to myself, and always had a million thoughts and feelings stuck in my head. This feeling has stuck with me throughout the years, and is something I still struggle to make sense of. Recently I came across the term "Empath." I googled it and read about all these people who can feel the emotion and energy of people around them. They consider it to be a gift. For the first time I felt like these people online were describing all of my thoughts that I have never been able to put into words.
When I looked further into being an Empath, I came across the psychic people who claim to be able to read your future, and I became skeptical. I don't know enough about what these people do, so I can't provide much insight with that. I just have my reservations, I am still not sure what's real and what's not. All I know for sure is the emotion that I receive from simply being around people, it's difficult for me to understand. It's confusing to dictate which feelings are my own and which belong to others.
One of the first experiences that I've had was at a pizzeria down the block from my apartment. I was having lunch when an overwhelming wave of tension and frustration crashed over me. Intuitively I felt the feeling coming from an older man and what seemed to be his son. It became clear to me that there was tension with those two men. Once they started talking, their conversation turned into an argument. I was thinking to myself, "Why do I feel this way? I don't even know these people." I was unable to shake the feeling until they left. I felt like I could catch people's feelings like the way you catch a cold. The more aware I am, the more I can recognize when I'm having experiences like these instead of ignoring them. It sounds weird. A few years ago I don't think I would fully believe someone if they told me all of this with a straight face.
I would like to become better at managing how other people's energies absorb into me and effect me. I plan on learning more about this topic with an open mind. I find that not only is it so important to feel physically well, it's also imperative to be at your best mentally. I'm striving towards an equal balance in being the best, healthiest version of me.
-Dani
Mar 28, 2015
March 2015- Update
As some may know, I began a new protocol centered around intravenous antibiotics a few months ago. My doctor prescribed Rocephin, but after completing my six weeks on that, I have not shown any signs of improvement. In fact, I was feeling worse. My daily function is around 20% as of now. Of course I push myself to do daily things that are necessities, but the repercussions of doing so leaves me struggling hard. I noticed that this is hard for some people to grasp. Some see me going out some days and wonder "Well, if she can go out and do that- why can't she come see me?" I've explained this before in my blog when I first started out. I have to pick and choose what to spend my energy on. The majority of the time when I'm leaving the house to do something, it's appointment or doctor related.
So where am I going from here? After speaking with my doctor, he believes the co-infection Babesia has returned and is working in conjunction with the lyme, causing me to feel so much worse. To make it easier to understand, I usually explain by saying the babesia is similar to malaria. It's a red blood cell parasite that is also transmitted through a tick bite, like lyme. He explained that if the babesia isn't taken care of completely, it will keep coming up while I'm treating the lyme. Besides thinking to myself, "This disease is so weird," I was a little frustrated. I have treated this co-infection at least four times before in the past years. It's extremely persistent, but so am I.
My new treatment plan seemed a little intimidating to me at first. It's stronger than any other protocol I've ever done. The first fourteen days are medications that treat babesia. Following that is six weeks of two different IV antibiotics, both of which I've never been on before. Not only does the intensity of this new plan have me questioning what is going to happen, but the price tag attached to it does as well. Fortunately, I raised money through a fundraiser in which I sold custom designed t-shirts. That will greatly help me afford about the first two weeks of IVs. I wanted to thank everyone who has helped support me through all of this. Your efforts never go unnoticed and I greatly appreciate everyones generosity and kindness. It means the world to me!
Jonathan & Rachel wearing their shirts!
I am hopeful that this new treatment will be successful. I am prepared for another difficult few months while I make way through it all, but am looking forward to coming out improved on the other end.
I've documented some of my experiences this past month through photos as well-
-Hickman Catheter insertion on 2/3/15
-Dani
Dec 6, 2014
Broke(n) with Lyme
Having a serious illness is tough in itself. Having a serious illness that isn't covered under health insurance when you've struggled with just getting by financially your entire life adds another element that will have you drowning at times.
First, Why isn't Lyme Disease covered under health insurance?
I will try to put this in layman's terms the best I can. Lyme Disease is an extremely controversial disease. It's a battle between the sufferers of this illness vs the medical community. Western medicine tells us that persistent late stage lyme disease does not exist. It tells us that symptoms of Lyme Disease will be present within the first two weeks of being bit by a tick. Then an infectious disease specialist will give you a round of antibiotics, and you will never have to think twice about this disease.
Unfortunately, this is not true for all of us. It is possible for the bacteria to go dormant in your body. It can hide and manifest itself into any system or organ in your body. Therefore symptoms go unnoticed and do not become apparent for months or even years down the line. So where do we go from there? One of the tests used to determine lyme, called the Western Blot test, is not reliable. If you don't have the right amount of positive bands according to the Center for Disease Control's (CDC) guidelines, you will not be treated. We get a plethora of scary symptoms out of no where, and our typical infectious disease doctors, and primary care doctors are still not giving us the treatment we deserve. In medical school these doctors are taught by world renowned professors. They are taught what lyme disease is from their textbook stand point. If these doctors were to treat someone who isn't CDC positive, they face getting their license revoked or suspended.
In disgust and disappointment, lyme patients are forced to seek treatment else where. The next step is usually going to a lyme disease specialist, know as a Lyme Literate Medical Doctor (LLMD). These doctors don't take insurance for the fear of losing their medical license as well. As you are able to infer, this causes huge financial distress.
This brings me to the famous psychotherapeutic question, how does that make you feel?
Infuriated.
Growing up, my family and I didn't have a lot of money. We were considered a lower-middle class family in a nice suburban part of Long Island, New York. My parents are very hard working, and sacrificed everything for me, from the day I was born to now. However, having to struggle financially made aspects of my childhood into young adulthood difficult. There were no college fund, no extravagant presents spontaneously during the year, and there was certainly no new car waiting for me in the driveway when I turned eighteen. I was fine with that. To be honest, I enjoyed working my way from the bottom and earning everything I have. I wouldn't have had it any other way. Now, I cannot say I feel the same way anymore. It's one thing to have to work to earn your way through life, but what happens when you're too sick to work? There's no self earned paycheck waiting for me at the end of the week to pay for my medications needed to stop this illness.
It's a very vicious cycle, one in which those without money must remain ill due to the simple fact of not being as financially fortunate as others. Is it my fault that my family isn't wealthy? Why am I being punished for not being a member of the upper class? How many other people will have to go through this as well?
Sometimes I wish I were diagnosed with a different disease. Appointments with LLMD's run anywhere from $250-$900 per appointment. Now think of how often someone that's sick needs to see or talk to their doctor, at least every six weeks to two months right? That amounts to about $3,600 per year. Explain to me how a twenty year old student like myself is supposed to afford that. It's near impossible! That's not even including supplements, vitamins, certain medications, and any other alternative treatment your doctor finds necessary to heal.
It seems you have to be born with a silver spoon in your mouth to get better. As stated before, Lyme Disease is a rich mans illness. I know stories of people losing their belongings, and even their homes over this. No one deserves to be sick and homeless. It's devastating, it wears your skin thin and robs you of all your money, your pride, and everything you have earned.
As much as this illness affects me directly, it hurts my heart that much more to know that many others are in the same boat as me. Sick or healthy, we need to come together to work towards a common goal of being treated as equals in the medical community. Through sharing this piece of my writing, I am striving for everyone to be well informed and aware to the truth of this illness. I hope for fairness and brighter tomorrows.
-Dani
First, Why isn't Lyme Disease covered under health insurance?
I will try to put this in layman's terms the best I can. Lyme Disease is an extremely controversial disease. It's a battle between the sufferers of this illness vs the medical community. Western medicine tells us that persistent late stage lyme disease does not exist. It tells us that symptoms of Lyme Disease will be present within the first two weeks of being bit by a tick. Then an infectious disease specialist will give you a round of antibiotics, and you will never have to think twice about this disease.
Unfortunately, this is not true for all of us. It is possible for the bacteria to go dormant in your body. It can hide and manifest itself into any system or organ in your body. Therefore symptoms go unnoticed and do not become apparent for months or even years down the line. So where do we go from there? One of the tests used to determine lyme, called the Western Blot test, is not reliable. If you don't have the right amount of positive bands according to the Center for Disease Control's (CDC) guidelines, you will not be treated. We get a plethora of scary symptoms out of no where, and our typical infectious disease doctors, and primary care doctors are still not giving us the treatment we deserve. In medical school these doctors are taught by world renowned professors. They are taught what lyme disease is from their textbook stand point. If these doctors were to treat someone who isn't CDC positive, they face getting their license revoked or suspended.
In disgust and disappointment, lyme patients are forced to seek treatment else where. The next step is usually going to a lyme disease specialist, know as a Lyme Literate Medical Doctor (LLMD). These doctors don't take insurance for the fear of losing their medical license as well. As you are able to infer, this causes huge financial distress.
This brings me to the famous psychotherapeutic question, how does that make you feel?
Infuriated.
Growing up, my family and I didn't have a lot of money. We were considered a lower-middle class family in a nice suburban part of Long Island, New York. My parents are very hard working, and sacrificed everything for me, from the day I was born to now. However, having to struggle financially made aspects of my childhood into young adulthood difficult. There were no college fund, no extravagant presents spontaneously during the year, and there was certainly no new car waiting for me in the driveway when I turned eighteen. I was fine with that. To be honest, I enjoyed working my way from the bottom and earning everything I have. I wouldn't have had it any other way. Now, I cannot say I feel the same way anymore. It's one thing to have to work to earn your way through life, but what happens when you're too sick to work? There's no self earned paycheck waiting for me at the end of the week to pay for my medications needed to stop this illness.
It's a very vicious cycle, one in which those without money must remain ill due to the simple fact of not being as financially fortunate as others. Is it my fault that my family isn't wealthy? Why am I being punished for not being a member of the upper class? How many other people will have to go through this as well?
Sometimes I wish I were diagnosed with a different disease. Appointments with LLMD's run anywhere from $250-$900 per appointment. Now think of how often someone that's sick needs to see or talk to their doctor, at least every six weeks to two months right? That amounts to about $3,600 per year. Explain to me how a twenty year old student like myself is supposed to afford that. It's near impossible! That's not even including supplements, vitamins, certain medications, and any other alternative treatment your doctor finds necessary to heal.
It seems you have to be born with a silver spoon in your mouth to get better. As stated before, Lyme Disease is a rich mans illness. I know stories of people losing their belongings, and even their homes over this. No one deserves to be sick and homeless. It's devastating, it wears your skin thin and robs you of all your money, your pride, and everything you have earned.
As much as this illness affects me directly, it hurts my heart that much more to know that many others are in the same boat as me. Sick or healthy, we need to come together to work towards a common goal of being treated as equals in the medical community. Through sharing this piece of my writing, I am striving for everyone to be well informed and aware to the truth of this illness. I hope for fairness and brighter tomorrows.
-Dani
Nov 30, 2014
Relapsed Pain
It's hard. It's hard to wake up every day and feel your body ache with pain. It's real, it doesn't go away. It sits on your shoulder as a constant reminder that you're sick. You're sick and until you find a treatment that works, you're stuck.
When your feet grace the floor from the top of your bed your legs feel heavy and wobble when you rise. You're weighed down like sandbags dragging from your ankles. Lightheadedness, bursts of colorful stars cloud your vision until you shake them away and regain balance. Laboriously dragging your heavy, worn out body throughout the house, searching for the next place to sit. "This is exhausting" you think to yourself. The fatigue overwhelms you, the throbbing in your head is seemingly prominent. You wince when you feel the nerves in your body twitching involuntarily. The pain burrowed deep in your muscles surfaces, as a spec of water runs down your cheek.
You try to read the distract yourself from your own body. You fail because your mind is so fuzzy that words shift and become incomprehensible. This all consumes you, physically and emotionally there seems to be no escape. There's just that dumbbell of pain stagnant on your shoulder. It forces you to write your pain out. That leaves you to this moment, when the words are said and you are able to go on. I continue, so at the end of the day I am able to smile. Not because of false optimism, but simply because of the belief that this is not forever. Pain is temporary.
I've unfortunately relapsed. I felt 95% better six months ago, and now I've fallen back down to anywhere from 25-45% on a good day. I really felt like this illness was behind me and that I could go back to school and work towards my degree, get a job, and make a new group of friends. All of that is put on hold again. It's heartbreaking.
How do we deal with relapses? How do we find the perseverance to keep pushing forward? Most importantly, how do you have the financial means to get better again? This illness has cleared out my college savings and left my family struggling. It infuriates me that people with Lyme Disease are not treated like patients in a typical medical setting. All doctor appointments, supplements and some medications aren't covered under health insurance. How can health professionals deny this disease when there's tangible, living evidence that this illness causes rampage throughout every single part of the body? One day we will have the answers to these questions. Until then the best we can do is be open minded to everyone's situation and educate ourselves.
-Dani
When your feet grace the floor from the top of your bed your legs feel heavy and wobble when you rise. You're weighed down like sandbags dragging from your ankles. Lightheadedness, bursts of colorful stars cloud your vision until you shake them away and regain balance. Laboriously dragging your heavy, worn out body throughout the house, searching for the next place to sit. "This is exhausting" you think to yourself. The fatigue overwhelms you, the throbbing in your head is seemingly prominent. You wince when you feel the nerves in your body twitching involuntarily. The pain burrowed deep in your muscles surfaces, as a spec of water runs down your cheek.
You try to read the distract yourself from your own body. You fail because your mind is so fuzzy that words shift and become incomprehensible. This all consumes you, physically and emotionally there seems to be no escape. There's just that dumbbell of pain stagnant on your shoulder. It forces you to write your pain out. That leaves you to this moment, when the words are said and you are able to go on. I continue, so at the end of the day I am able to smile. Not because of false optimism, but simply because of the belief that this is not forever. Pain is temporary.
I've unfortunately relapsed. I felt 95% better six months ago, and now I've fallen back down to anywhere from 25-45% on a good day. I really felt like this illness was behind me and that I could go back to school and work towards my degree, get a job, and make a new group of friends. All of that is put on hold again. It's heartbreaking.
How do we deal with relapses? How do we find the perseverance to keep pushing forward? Most importantly, how do you have the financial means to get better again? This illness has cleared out my college savings and left my family struggling. It infuriates me that people with Lyme Disease are not treated like patients in a typical medical setting. All doctor appointments, supplements and some medications aren't covered under health insurance. How can health professionals deny this disease when there's tangible, living evidence that this illness causes rampage throughout every single part of the body? One day we will have the answers to these questions. Until then the best we can do is be open minded to everyone's situation and educate ourselves.
-Dani
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