ADVOCACY Archives - A - Z on Lyme Disease

6 Ways To Beat Holidays Blues

We need to keep in mind that not everyone shares the Holiday spirit and there are some people who find this period of the year extremely difficult. While most of us look forward to reunite with our loved ones, others try to isolate themselves and stay away from the holiday madness which acts as a trigger for their depression.

As a chronic illness sufferer, I know how challenging and daunting it can be to see others parading their good cheer and merriment while you’re all under the blue. It doesn’t make you a Grinch nor a Merkel, but it certainly gets on your nerves to see everyone around you enjoying a life of happiness that you have been deprived off.

This is when the Why me? question reappears and wreaks havoc through your mind, making it more tough to pull yourself together and move forward. You’ve done with it before and thought of having it sorted. Though, somehow it pops out again and puts you on the wrong path again.

Fortunately there are ways to chase away the holidays blue. All you need to do is to be willing to change something and step out from under the black clouds of doom. Here are some ideas that may help you improve your spirit and pack away the Grinch:

Avoid self-isolation as much as possible, join a gathering or a party! Try not to roll alone into your own misery. It will only make things worse. Attend that party at work or cocktail and engage in conversation with someone you never talked to before. You may find it easier to talk to someone new who is not aware of your condition. You can even enjoy having a proper conversation non-relevant to your illness. If you were trying to avoid feeling pity for or having shallow greetings, now it’s your chance to socialize!

Engage in conversation, be honest about how you feel. When asked about your health, be blunt and offer honest answers. This enables you to bring more awareness about your condition and allows you to see who are those really interested in what’s going on with you.
Shop online for your Xmas presents. If you know that crowds tend to get you overwhelmed, why not avoid them? There are plenty of websites where you can buy your gifts! Save your energy for some other activity that you would enjoy more!
Travel to a new destination, if you can afford it and if your health allows it. Go explore your surroundings as much as you can. Nothing beats the excitement of revelling in anonymity while being away from home. Don’t think of it as a way to escape reality, but as a reward, a ticket to pamper yourself.

Create new traditions. Sometimes it is much easier to try something new or step out of your comfort zone instead of doing the same old thing that doesn’t bring you much joy. Who says you need to have a fir tree or thousands of lights shimmering on your house? If you don’t feel like doing it, ditch it and don’t feel guilty about it! Step out of the patterns and celebrate the holidays on your own pace, following your own rules. Even Santa changes the rules once in a way!

Cultivate gratitude for all the positive aspects of your life. Although it might not seem there is not much left for you to be thankful for, you will be surprised to see how many other things you are taking for granted. Try to make a list of the things that are still going okay in your life and focus on those. Happiness doesn’t come in bulk, it’s all made out of little moments of joy that sprinkle our life here and there.

Wishing you all Happy Holidays and a wonderful time filled with love and peace!

When A-Z Lyme meets The Mighty

Over an year ago I became a contributor to THE MIGHTY, meaning they accepted to publish on their website some of my Lyme related articles. They offered me the exposure I needed to voice my story and raise more awareness for Lyme disease.

Thanks to them, some of my articles were featured on Yahoo and Huffington Post. I couldn’t have reached a wider audience on my own. In addition, they added a direct link to my A-ZLYME.COM on each of my stories that they published. That little link they added, helped me increase the traffic to my website and have it rank higher on the Google search, which made it more accessible to other people.

What did I get from joining The Mighty community? More than I could have ever asked for. I got an incredible exposure for my Lyme disease awareness campaign and a supportive community that helped me move forward with my struggles. They made me see that I was not alone. I also got a lovely t-shirt that I proudly wear. It’s the one in the photo below.

On The Mighty’s platform, I connected with contributors and readers. Some of them were touched by different illnesses while others were simply looking for answers. What they had in common was the need for support. The Migthy offered just that: a digital health community that aimed to empower and connect people struggling with health challenges and disabilities.

Among the replies I got for my articles, I remember one from a Lyme-sufferer, a women from the states. She wrote to me, thanking me for voicing her cause and giving her hope for better days. Until that moment, I hadn’t fully grasped the impact my articles had on other Lyme sufferers, as I was more focused on preaching how to prevent Lyme or explaining others what it entailed to live with Lyme.

Her message made me understand that I needed it to open up and talk more about my personal experience with Lyme, which I did and continue to do. Otherwise how can one expect the rest of the world to know how it feels to live with an invisible illness, if he doesn’t talk about it? How can others know what he feels if he doesn’t share his struggle? Not everyone has the ability to read minds!

One year down the road and I still get asked why do I write for free about Lyme, or why do I refuse to put adds or monetize the website. My answer will always be the same: “Not everything is about the money!” When I created A-ZLYME I wanted it to address all possible questions related to Lyme, from A to Z, hence A-ZLYME.

It was designed to help those looking for information about Lyme disease and make their search easier by having all the data in one place. I know by experience it ain’t easy nor pleasant to spend long hours looking for information online while fighting brain fog and experiencing neurological symptoms of Lyme.

I might not have an answer for how to get rid of Lyme, but I learnt how to cope with it. I know that building mental strength helps the body perform at its peak which is key for living a happier life.

If you are struggling with a chronic illness or you have any health issues that you’d like to talk about with someone, you may want to have a look at THE MIGHTY and consider joining them.

THE WORST 40 MINUTES IN MY WHOLE LIFE

Years back, while I was still struggling to get a diagnosis for my mysterious invisible illness, I reached the limit of my patience. I still remember this incident as if it took place yesterday. It was my first visit to a neurologist’s office.

I really had high hopes for this appointment. After seeing many other specialists before him, all unable to offer me an explanation for my multitude of symptoms, I was hoping he would be the one that would have a breakthrough. I was kind of at the end of the line, facing a dead end.

To my surprise, this prestigious neurologist told me that I was perfectly healthy, that nothing was wrong with me and that I should return to work. I remember clearly his annoyed face when he said to me: “Miss, everything is in your head! You are fine to go back to work!”

In that second, I was shocked. I couldn’t tell exactly what was more painful: the physical pain I was enduring or the frustration accumulated within all those months of useless medical investigations. Or maybe it was the arrogance of this doctor who was insinuating I was a pretender.

My mind was telling me, that at least he could have had the decency to buffer it, and tell me I may suffer of a psycho-somatic disease, meaning basically almost the same thing. I wasn’t aiming for compassion or empathy from him. All I wanted was an explanation for my symptoms. It’s hard to move on when you don’t know what you are fighting.

But him, in his mind, he had taken a decision. He had labelled me as a lazy person trying to exploit the benefits offered by the workplace’s insurance company and avoiding to return to work. Within less than an hour, he turned me from a sufferer into a scammer.

Those 40 minutes spent in his cabinet seemed like hours. While I was there I experienced such mixed emotions. I felt powerless, angry, ashamed and miserable at so many levels.

Frustrated because the doctors couldn’t help me again. That I was tired to be treated like an interesting case and be passed over from one specialist to another.
Aching. I was physically aching. Running around from one hospital to another, waiting long hours until the actual consultation in the cold weather with temperatures way below zero were just some of the factors contributing to my chronic fatigue, exacerbating some of my Lyme symptoms.
Angst because I thought I was getting closer to my death since my whole body was in pain.
Ashamed because suddenly I had become someone who needed help. My pride dissolved into my anger.
Hurt because my genuine suffering was left unheard.
Angered because someone was thinking I was acting. Also for not being taken seriously and not being treated with the respect and care I was deserving, that any human being actually deserves.
Scared because I did not know what was making me feel that way.
Worried because I did not know if whatever I had was curable or not.
Petrified by the idea I will loose my independence completely and I will end up in a wheel chair or even die.
Lonely because I was an emotional mess and my partner was also sick at the time. I spared him the details of my days, thinking that dumping all my problems in his hands will not help him recover from whatever he was fighting at the time. Therefore, I had only myself to share all of this colossal burden of thoughts.

What about you? What were you worst two minutes? Would you like to talk about it?

EXPLAIN MY PAIN: LYME

A journey of pain and suffering

Being a Lyme sufferer prevented me from getting back to working full-time and made me jump through a lot of hoops. In a nutshell, I was one of the lucky ones who managed to see the light at the end of the tunnel, meaning that I managed to find a way to live a normal life after becoming a Lymie.

I won’t lie to you, this was a long journey with ups and downs and many dead ends. It was a journey that I did all alone cause most of my friends vanished on the way. I moved on and I learnt to enjoy my solitude. I saw it as in investment in my own person, not a waste of time for social formalities.

Throughout this journey I gained a lot of knowledge and I feel I grew like a person. Maybe I finally grew up?! I learnt about suffering, compassion, sharing and love. And I now see the slight differences among all of their levels. I learnt how to talk to myself and more precisely how to listen to myself. The most important thing was that I finally understood that the power to heal laid in me.

Self-pity and fear of loosing control

At a certain point the self-pity took control and I was unable to see the way out of this sickness. I experienced lots of episodes of anger, self-pity and frustration.

Suffering from a mysterious illness and experiecing a wide array of strange symptoms are more than enough to make one question his sanity. Especially when no doctor can offer a medical explanation for it! Not to mention when they imply everything is not real!

When my health went down the hill to the point where I needed assistance to walk or take care of myself, these were the most frightening moments in my life. Loosing my independence hurt even more than the physical pain. The day I had to accept I was no longer independent and I needed help was a crucial point in my journey. I was lucky that one of my friends insisted on moving in with me in order to help me.

I couldn’t even hold a coffee mug in my hand, or walk straight for 10 minutes without sitting down or feeling exhausted. Then the sleepless nights started – the pain levels were so high that I was falling asleep only when my body was exhausted by pain.

Since my health continued to deteriorate and none of the specialists I had seen couldn’t help me, I decided to take this issue into my hands. I felt I had no time left for fighting doctors, an incredibly stupid and unfriendly medical system or an insurance company who was treating me just like a number, insinuating I was faking my symptoms.

Lyme Disease awareness

Lyme is a serious threat for everyone. It is a shame that so many people have to suffer just because the doctors are not properly trained to diagnose it. It is hard to believe that a tick bite can do so much damage!

My story echoes the voices of many other Lyme sufferers who underwent the same experience of getting infected with Borrelia burgdorferi, one of the smartest bacterias on Earth, capable of evading the host’s immune system and spread throughout the body wracking havoc.

Thanks to the Internet, more and more people learn about it and discover that it exists in their countries as well!

THE PAIN OF NOT LOOKING SICK

When you suffer from an invisible illness things are more challenging because you need to deal also with the pain of not looking sick. It feels awful being in pain, living in pain and not being believed. When you have to constantly explain yourself and convince others that your sickness is real and you are not hypochondriac, it is a horrible feeling.

Take a look at my photo above. At a superficial glance, there’s nothing wrong with me. I look just fine! That’s where everyone is wrong! Little you or others know about the war going on under my skin, about the long list of invisible symptoms I experience. I used to get annoyed whenever I was judged based on my appearance, while I was struggling to look “normal”. A few years back I took another approach: I started to Lyme educate everyone. I did my best to explain all that entails being a Lyme sufferer.

Once in a way when I attended a social gathering or when I met someone new, I was faced with the the same issue: everyone kept on telling me I looked healthy and that I may had a wrong diagnosis. At one point I had given up using makeup just because I could not stand one more comment regarding my appearance. I wished to look sick, just to be in line with everyone else, to make it easier for others to believe me. Their disbelief and ignorance made me feel worse than I already was.

Whenever asked what was the most annoying symptom that I had to put up with, I said that it depended on the day I was having. That’s when I saw people raising an eyebrow in disbelief. Those who took an interest in finding out more about the details of my invisible illness know that I always tried not to burden them with my daily cocktail of pains and symptoms. Once they heard me describing how the burning felt like, they understood my misery.

The burning under my skin is by far one of the most disturbing symptoms. It never leaves me. It simply increases or decreases its intensity depending on my other symptoms. I also get shifting pain in the muscles, joints and bones, combined with electrical pulses, twitching prickly tingly muscles. All of these things happen within my body on a daily basis. Despite all this, I still manage to put a smile on my face and carry on with my day. Life goes on! I learnt how to deal with all these.

Neurological Chronic Lyme Disease (Neuroboreliosis) takes things to another level. Once the illness starts to affect your nervous system, you have to deal with a new ordeal of symptoms. Some of them are quite strange and bizarre, though not everyone gets to experience all of them in the same time. Some people have these sensations during a flare, a herx (Herxheimer reaction) while others have to deal with them on a daily basis. I count myself among the “lucky” ones who still have them.

When Borrelia Burgdorferi (the main culprit for Lyme) and Bartonella (co-infection) are hijacking your nervous system, you get to experience some unusual sensations, unknown before like:

crawling sensation – a creepy feeling that something is crawling around on or under your skin, throughout your body
freezing or burning sensation
buzzing or vibrating – better described as a TGV train passing through your body making each single cell vibrate
numbness
tingling (mostly in the limbs)- being pricked at once with thousands of needles. It does not feel anything like acupuncture. It is a totally different sensation.

How can I translate into words the burning sensation? Imagine that you went to the beach and got a severe sunburn which is making your body and skin ache. What do you do? You avoid touching your skin in order not to feel the pain or the tingling burning sensation. Now try to picture how it feels applying a frozen ice cube on your skin, all over that area that just got sunburnt. I am sure you just shrug your shoulders trying to visualize it. This is the best explanation I could come up with for the burning under my skin. Only difference is that it feels that way throughout the entire body. Some days it might shift from one area to another and it can change its intensity.

The craziest sensation is when you experience this burning on your head. Generally when you have neurological Lyme (Neuroborreliosis) , you get the “privilege” to feel it. That is a bit different. It feels like you have a slug or an army of ants moving slowly leaving an icy trail on your skull.

After reading about my daily ordeal, next time you meet someone touched by an invisible illness, please don’t tell him he looks good or healthy! Refrain yourself from saying something that would make him feel worse. Try to be creative. Make an effort and come up with something new!

RISK OF LYME DISEASE INCREASES WITHIN CANADA

The federal government allocated last year only $4 million for a research program meant to develop improved Lyme diagnosis, testing and treatment. Despite the fact that the Canadian health authorities have noted an increased number of cases of Lyme, the changes are not noticeable at all.

Nowadays Lyme disease seems to get more recognition than the previous years. (Not thanks to the government though!) It’s all due to the Lyme sufferers who turn to the media.

The pace is still incredibly slow. Yes, people hear more often about it, may learn a thing or two, but those who are directly concerned need more. They need reliable tests and access to proper care and treatment.

Within the last seven days, CTV covered the stories of two Lyme sufferers from Maritimes and Saskatoon. Sadly, their stories followed the same pattern. They had to get themselves diagnosed abroad and spend their lifetime savings on treatments which were not covered by the insurers.

It’s so frustrating to see that some many people can’t get proper help and they are being refused treatment. Why? For the simple reason that provincial governments still insist on saying that Lyme disease is rare within Canada and it is mostly contracted abroad.

Raising awareness about Lyme is crucial because it has turned into an epidemic on full swing.

Until when this controversial condition will be ignored by doctors? When will they learn and admit that Lyme is a global threat? Each year more and more cases of Lyme are being diagnosed all over the world, from North America to Australia.

The doctors need to be better educated on how to diagnose and recognize the signs and symptoms of this debilitating illness.

There is a dire warning saying that the tick population flourished due to the mild winter we had so far. Scientists claimed that we will be faced with an unseen outbreak of Lyme disease cases.

How many people and lives will be destroyed before a proper testing method is developed, not to mention a cure for Lyme disease?

TICK BORN DISEASE WORKING GROUP MEETING BRINGS HOPE TO LYME PATIENTS

The lack of scientific progress regarding Lyme disease has created a lot of frustration within the Lyme community. Lyme patients are tired of being patronized, discounted and dismissed.

Thanks to the Tick Born Disease Working Group changes are going to be made. Within the two-day meeting of the HHS Federal Tick Borne Disease Working Group held on December 11th and 12th, on Washington D.C., vital questions were addressed.

Here’s a bullet point summary of the meeting:

DEVELOP ACCURATE DIAGNOSTIC TESTS

Develop tests capable of recognizing all stages of the infection and the co-infections
Discard the two tier testing approach
Educate the patient regarding the test’s reliability (false negativity)
Fund new research
Examine together medical anecdote, control studies, empirical observations
Leave aside egos, pride, intellectual rights, come together for a better cause.

FIND WAYS TO IMPROVE THE LIFE OF LYME PATIENTS

Forget the CDC definition of diagnosis
Recognize, treat Lyme and co-infections
Create a national education course for medical providers
Provide support to the doctors treating Lyme patients (no more penalties, disciplinary procedures, license suspension or other repercussions)
Allow physicians to treat the patients and their symptoms.

METHODS OF PREVENTION

Mass media prevention campaign
Tick awareness and prevention curriculum should be developped and implemented in all forms of schooling
Develop a safe and effective vaccine against all Borelia strains and co-infections
Create proper screening technique to avoid transmitting Babesia to the national blood supply for the public’s safety.

For a more in depth information regarding the agenda, the public and federal members, stakeholders please watch the videos below:

Tickborne Disease Working Group NatCap Lyme Presentation

TickBorne Disease Working Group – Jenna Luche-Thayer

Tickborne Disease Working Group – Nicole Malachowski

Tickborne Disease Working Group – Susan Green

Tickborne Disease Working Group – Olivia (LivLyme Foundation) – Public Comment