Thirty

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How quickly time goes by. I’m going to be 30 years old next Saturday. Unlike so many persons, I’m so excited with this birthday, I don’t know why, but to me this number is cute XD. I always have felt this way, I’m excited about the ages cuteness the number seems to me but not for the time it means.

I won´t lie to you, I see those “ages” little signs like someone else: “Oops!, a new wrinkle! Oops! A new expression line!” But I don’t only feel that…I see on my face those unmistakable internal war signals against this damn bacteria is called Borrelia that comes outside from the deepest of my body.
I see the passage of time on my vitiligo disease, on the violet swollen bags under my eyes, on my droopy eyelids. At the same time I see this duality where the life and the health are flaring up. I don’t only see it, I’m feeling it inside. This internal insanity where I was riding more than twenty years ago, this good and evil chaos where little by little evil won the battle to the good. Nowadays I feel that I’m reversing this symptoms´s and feelings on’s bipolarity to return to my 7 years old. Then I just began to discover the world when the tiny tick gave me the gift: to learn how is to live on a lean mixture. 

Nowadays I feel that I’m arriving to that point where everything failed and I can to start my life over, but now with the power of a sane body. Maybe I’m strongest thanks to all the years that I’ve learned to live with indescribable fatigue. They were like a special  strenuous training, like the culturist’s or Shaolin’s one. At least people with Lyme become a life’s Hulk!

This last week was very special to me.  My hormonal cycles have been always a torture, and they force me to adapt my life to their desires. Meanwhile Lyme became worst the hormonal cycles worst too in pain, decomposition and above all in fatigue. The body is exhausted by the disease and, at the same time, it’s submitted by the hormone’s brutality …and Ei! They’re so damn bitches! And nobody is free of them, neither men nor women – although in women cases is more evident. 
The extreme tiredness grows up to a high level during the second fortnight of the cycle and it force me to live in bed, sleeping at all hours. The word  “draining”  remains short to describe it.

So now I’m in this eternal weariness moment, and here I am writing this personal Bible, without scarcely mental fog or confusion…Ok…maybe I’m a bit foolishly XD. So something good must be happening inside of this meat’s bag that shapes me, don’t you think?

I´m happy that this time I’m not going downhill  as far as make me mad and impossible to regain my energy  to who knows when. Anyway, I know how this works , at any time and without warning it gives me the punch and I remain zombie.

Well, I’m changing the subject so much XD. To me, this 30 are maybe like a myself’s rebirth, although I’m not sure of my feelings right now because of what I explained you in the previous paragraph about surprise going downhill and also because of the January usually  makes me feel like a life’s time rebirth. Probably because it’s the month of my birthday, probably because it’s really the birth of the year and It brings this connotation of happiness, renovation, youth, illusion, …

I’ve been feeling for years like I was 30 years old, so now I’ll really have it. But I wasn’t waiting for the  appearing of  this so strange sensation at scanty hours of doing the number’s change, and here is where comes this cherry that decorates the special week.  Thanks to my lovelies from Madrid I was revising the last three year’s photos more or less. I found the first day ones when I went to the clinical to testing me for Lyme and  know if I haved it and how fucked my body was.

Mam! I was right …my body was really fucked off, and you can see it on the photos, but I was sooooo happy ‘cause finally  I would know what happened into my body. My happiness and my dad’s  happiness too is reflected in every single image. Also, you can see my squid grill’s face! My God, my poor vitiligo burned that day. No, I’m not an irresponsible person, I have care of my vitiligo, but everyone could have fails like that… and I wear umbrella, jacket and leggings covering me….but I didn’t remember of my feet…they suffered the worst part.

In short, when I revised the photos of the latter years and see all my physical changes that the disease and the treatment are provoking  to finally arrive to actually, I feel that the things are improving and it was like to suddenly I could live all those years that, in some way, went unnoticed to me. But this time I could relive them in more positive way, with  well-being and health feelings that are growing inside of me. I relived them inside of me like I would have lived them if I was healthy. A veeeery strange feeling but sooooo beautiful and pleasent.

Sincerely, I don’t know how exactly things goes inside of me,  I have to do a control test to see if I have the plague fumigated, half fumigated, if I have to clean all the shit that the occupies have left, or if I have to continue killing them. I only know that I’m feeling more calm and a little more capable,  despite  the typical relapse’s natural fears, that the test’s results isn’t so good than I wish or  the tiredness flutuations.

Maybe what it happens is that I’ve found the treatment’s order that feels better to my body and help it to keep the energy stability. I have clear that I’m still continue depending on medication more than I wish. But it’s possible that I’m feeling better its effects these days. Maybe it has been the magic of met the Lyme girl and finally have someone trustworthy who has suffered this disease. Her strength and her realism in front of what is Lyme and her spirit and example of healing that makes me to see so clearly the goal like when I began the treatment. Honestly, healing of Lyme is a long and arduous process that it takes so much time and work, and there may come a time when you don’t know where do you have the face and where do you have the ass… In that moment it’s really good that someone reminds you that this process have an end and you must fight to arrive to this goal. Someone who tells you that you alright. Realize that you’ve lived and felt so many things that are common onto all the people who suffer this experience. Thanks Lyme girl to give me the calm and give me back the hope and the strength to continue this healing road with the security that I can to overcome it. It’s not that I wasn’t beliving it, simply I was suffering of deep ignorance, the only thing that I knew was my experience and I didn’t know if it was natural everything for what I was happening.

Really, any patient of any disease needs to meet more people who is happening for the same thing … this is health for the soul I assure it you. And it’s specially important in persons like me who are more suffer in front ot the ignorance than when we know the reality, for very fucked that it’s.

I met the Global Lyme Alliance Global Lyme Alliance at the same time that I met Lyme girl, and this was another blessing. I’m learning so much about Lyme, I read stories from anywhere, articles from Lyme suffers and from their loves ones, doctor’s articles, investigations, supports,…  Eeeeeverything write in english jejejejej (I mean I know less people with Lyme in Spain because the disease is more unknown)so I feel internationally accompanied.

And, of course, at the risk of sound sappy, the unconditional love that everybody who decided to stay by my side in this circumstance give me. You always renovate my forces! Thank you and I love you!!! ;*;*;* Clearly, love is strong and if it’s given in right way it’s a really important part of the healing and it’s everything in life. But I’ll talk better about this in another moment ;)

I wanted to write this blog time ago, most of you know this, but it wasn’t possible to me. I hope that this take-off that I have today it could be the signal and the beginning of the newest posts and that I could tell you very much about Lyme allowing my head permit me.

And, although I speak so much, I hope that you like reading me, and above all, I hope to increase awareness  about Lyme and that this could be useful for everyone in the world, people with or without Lyme.

Be free to comment, always with respect please, and I’ll be delighted to read you.

Kisseeees!!


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The other side

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(The Title of this post is a tribute to the Mac team.)

Some days ago I found a touchy document in Internet. It was a very special letter full of love and realism…..a letter written in those difficult moments in life anybody, with a beloved one with Lyme disease, can find themselves in. Jason McAlister is the author of this precious letter addressed to his wife Carol MacAlister. In his letter Jason expresses his most inner thoughts and feelings while fighting against his own shyness, and not only he shows his support and unconditional love to his wife who suffers from chronic Lyme disease, but also use lyme as a means to talk about the grim reality that this illness hides. He does all these from a social, medical and personal point of view. His letter is of great help to the affected and their families because his knowledge and friendly support can help others to cope better with Lyme and to make the illness known to everybody.

From where I stand, I must say, that Jason explains truthfully all the process of Lyme disease; from the moment prior to its diagnosis to its treatment, the obstacles, the problems with medicine, its cost, the illness acknowledgement and what it means at an emotional level. He talks about Lyme without overdoing it, without being pessimistic, without giving false information and moreover, showing his unconditional love to his wife in such a way that in the end you can’t help but weep emotionally. His last recommendations for the Lyme diseased beloved ones and for their companions are really precious. It’s what we all need beyond our medicine, it’s what makes a difference in our lives. And for the “Lymers” those who know how to accompany us, become the greatest gift and their support something that we will never forget.

Thank you very much Jason and Carol McAlister for sharing your experiences and wisdom with all of us and to grant me the honour of translating your text to be able to share it in my blog. I’m sure that it will help many people!

Translation: Alicia Domínguez


"My husband wrote this today and I've shared it a few places, but now I share it on my page. This is so important and so beautifully written from the "other" side of Lyme. This man is my heart! ❤️💚

My Lyme Experience –

Today is May 31st and is the last day of Lyme Disease Awareness Month. One of the many wonderful people that deal with this horrible disease strongly suggested to my wife, Carol McAlister, that she chronicle her battle which she has bravely done this month. So now it is my turn to express from the “other side” of this disease as her husband who watches her suffer daily. This is very hard, as an extreme introvert, to express my experience and feelings openly but I hope to, some may say selfishly, use this medium to help me deal with “my side” but also praying that it may serve to help others. At the very least maybe help educate those that still do not understand what it is and what it does – to life, family, friends and marriage.

This battle, like most, has been long and fraught with many obstacles and challenges. Our personal story is 7 years in the making and continues, continues as we are assured the seasons will change. During this time we have received no less than 10 different diagnoses from highly educated and respected medical professionals. These range from Multiple Sclerosis to Neuropathy, to Fibromyalgia, to my favorite… “psychiatric issues”. This one, in particular, angered me more than the others… From there comes uncertainty from these highly educated and respected medical professions… From there comes… Prescriptions… Because everything is “cured” with a pill, salve, liquid or therapy. These are usually very strong narcotics to help suppress the enormous amount of pain chronic Lyme patients deal with. Not on occasion, but relentless 24/7/365 pain that never goes away but can be “masked” with drugs like; hydrocodon, Lyrica, tramadol, oxycodone, Vicodin, Norco, naproxen, Morphine to name a few. These are highly addictive and on a long-term basis can do great harm.

The visits to more specialists continue with these very highly experienced and educated medical professionals. I truly believe that they want to help, but they cannot treat what they do not know, and that seems to be very hard for them to deal with… the not knowing.

Then somewhere from the outer reaches comes, that one person that has the courage to post, write, blog or scream out what they are going through. Somehow you see, read or hear this and low and behold… THIS IS YOU! You get tested, well not really tested, you get a simple blood test. The results are read by your doctor and it is negative for everything. Shoot you are healthy, so your blood says…

You at some point get another blood test but this time you have gotten wise to the “system”. You probably pay out of pocket and have a “special” test done and read by “special” doctors. In the immortal words of Gomer Pyle: Surprise, surprise, surprise… You are not healthy, so your blood says. Now the agony begins… What to do next?!

I don’t want to scare anyone with this, but the next part is possibly the hardest (in my opinion). You have a diagnosis. I have had several well-intended friends and family say “well at least you now know”. To a degree they are exactly correct, no more “Western medicine” specialists, you can stop asking your General Partitioning doctor for help. But… It is very lonely out here, out here where there is no more co-pays, no more MD’s, no more “reduced price” prescriptions. There are only Homeopath, Naturopath, Osteopath, etc. doctors. Herbs, roots, seaweed, ancient Chinese remedies, etc. in place of the prescribed pharmaceutical solutions. I once asked my wife’s Naturopath Doctor; Are you are real doctor? Did you go to a “real” school? (got the evil eye for that one) See there is a lot of education needed for both you and those that are going through this with you. By the way, yes she is a real doctor and yes she went to a “real” school.

You will want find “that place” you know the one, that promises healing for only a “small price” and what is money anyway without good health. Help your Lyme sufferer research treatments. Or at the very least listen to all of research that they are doing. I personally really suck at this, not because I don’t want to hear it, but I it is so overwhelming. Help with the decision, remember they have Lyme and you probably are aware of “Lyme brain” which takes an intelligent person and reduces them to a shell of themselves. So he or she needs your help, wants your help. And finally…

I do not know the exact stats but will reference the many stories that my wife has shared that come from blogs, FB and personal conversations she has had over the years. The disease does not only take away the person’s life, it can end friendships, strain family relationships and can end marriages (it seems to be an alarmingly high rate – again I do not have specific facts/stats but she has heard it a ton). You may ask why, well I will simply say – read the previous paragraphs, that’s why. It’s hard, it is unbelievably hard. Again the medical community does not recognize Lyme, insurance does not recognize nor authorize alternative treatment. Remember this does not exist… I know that the patients have to be wondering, at some point, am I imagining this or at least they want to wake up from this horrible nightmare. It is not unexpected that a spouse or significant other would not feel the same.

So my advice to all of you that have a loved one with Lyme… STAY.

This is real, realer than you can imagine and leaving or not believing just proves the belief that it is not real. STAY. UNDERSTAND. FIGHT. LOVE. You cannot fix it, but you can make it better by simply STAYING and FIGHTING with your loved one. It is hard, you may want to flee. You may want to “jump” off this rollercoaster. But - STAY. UNDERSTAND. FIGHT. LOVE. Life is full of wordless rhythms and you just have to find yours. It is out there, it will take time, be patient. Be on guard to not let ANYTHING, or ANYONE’S perception of what you are going through put a wedge between you. STAY. UNDERSTAND. FIGHT. LOVE. Share with those that will listen, take it from the male introvert, it will help. Not all that you share with will understand, your Lyme sufferer is probably a master at hiding it. For the people that do not see your loved one often it will appear that they are healthy, they must have found a cure. Nope, no cure here, remember they are masters at hiding because very few really believe that they are “sick”.

People will share other illnesses, even “did you try…” or “what about…” This will begin to frustrate you, even make you mad. Let it. Before you can confront your inner demons you must be able to recognize that anger, frustration & fear are all a huge part of this journey. Controlling each of these will be your goal. This is easy to write and read, and I have not gotten there yet but I will and you will too. Remember, STAY. UNDERSTAND. FIGHT. And LOVE like you have never loved before.

Our final chapter is not complete, and it is not complete for most Lyme disease sufferers. All I can say to those that do stay, hunker down it is going to be the fight of your life but you are strong, your Lyme sufferer is strong and TOGETHER you will beat this, TOGETHER you will conquer what those in the medical world think doesn’t exist. You will lose friends, you will have strained family relationships – some that may never be mended fully – but never forget to STAY. UNDERSTAND. FIGHT. LOVE. Your Lyme sufferer needs you because going it alone should NEVER be an option.

I never thought I would write something like this, and especially not this long. I don’t have many friends and fear that this will not get out to very many people. All I ask is if know someone with Lyme please forward, not that I think this will be some miraculous help but if it reaches one husband or one wife and by reading this they STAY it will be worth this extreme introvert’s fear of sharing.

To my wife, I love you and I will STAY. UNDERSTAND. FIGHT. And LOVE you till the day I die. I will never give up until we have beaten this into remission. I know you don’t believe me but YOU are my rock and I am so unbelievably proud of how you fight this for you and our family.

I pray daily for my wife and children. I pray for all you who suffer with Lyme and for those that care for Lyme sufferers. You are Superman, you are Wonder woman and with the grace of God and your determination you will succeed in whipping this!

With all my respect and admiration for what you go through daily,

Jason McAlister

“Team Mac”

Original text here

Al least I only say on thing: STAY, UNDERSTAND, FIGHT and LOVE! Thank you so much from the deep of my heart to everybody who stay by my side ^*^

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Map of Lyme

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A month ago more or less I found a boy from Madrid who suffers Lyme too. He remainds a lot to myself on his constantly concern wanting to know more and more about the disease, to find better treatments,  to show Lyme to the world,…


So well, he’s one of that kind of persons who brings grains of sand to the cause, well, more that grains are metheorits because they get big and important progress.


He creates a web (fucked as he is and everything, of course, we are Titans!), what it’s in reality a big database, so intuitive and complete where you can see how many people are in the world with “x” disease.  In this map there aren´t only people with Lyme, but you can search a lots differents diseases…and they aren’t few! What a huge list are!

Totally, you can join into this beautiful map like a person who suffers “x” disease, and this is perfect to people with Lyme because the majority of us aren’t diagnosed by the public medicine and we aren’t recognized. This map is a fast and efective way  to know the real number of Lyme suffers (and for another diseases that are in the web). The community and the map are growing day by day… I’m in yet!

I encourage you to join it! Don’t be scare, you can filter the privacy level that you want, the important thing is that the world knows tha we exist! So many people appear in the map more easy will be to show that we exist and that this disease isn’t strange or low, and the reality is that we are many.

To me this is a big step to the recognized of the Lyme in our country and in universal leve, shut up mouthes and demostrate that we are in front a pandemia where anybody is free to take.

How it works

If you wanna search a disease from scratch: Map of the wolrd diseases finder

You can write directly the name of the disease or select "View all maps". In the second case a large list appears in front of you with all the diseases you can find on the web.

Mega list of diseases...and it isn't  half!!

If you want to join the map of Lyme: Map of the world Lyme

You only have to pick up on  "join the map" and follow the steps. It's easy and fast. 

I wish with all my heart that you encourage to join in and all of us together, let's raise the voices of our bodies!!!

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Kokoro (heart)

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My heart bangs, strong, constant, incessant, with weight, like if he was a giant caught inside of me trying to break up my body and be free.
He makes me shake from top to bottom, I feel every pulse everywhere in the back of my body, my clothes and sheets tremble to the compass of his rhythm. I hear him in my head and in my ears. Sometimes it relaxes me and take me to the dream, and sometimes it’s so intense that he produce me the opposite effect.

My heart so many times doesn’t do pumpum… rather he does  paparapapa, Safri Dúo’s style XD. Hear him and “touch him” (oh yeah, touch him, he’s so brute that I can touch him) in those moments it could be scary because you know that this rhythm isn’t natural and the first word you think is “Arrhythmia?”.  I downplay it thinking that if it was this I’d be having a bit of funk. ERROR! The reality is that I’m having heeve jeeves everywhere, everyday and this is one more between everything else (and that I’ll be writing them).

Sometimes when my heart is in heavy metal’s drummer phase it starts making me feel pins and needles that go from most to least intensity and from most to least duration.  How hurt this fucked punches! Other times I simply feel like a burst of speed followed by something like an air’s bubble. I notice like a “pop”  and feel a kind of  a little suffocation that forces me to give a very strange cough to unblock. Super strange and super scary too.

Kokoro-san giving everything! 

Those punches and irregular rhythms of my heart were one of the first big symptoms that I had when I was a child, I don’t know if it was weeks or months  after being bitten. Before it already I had the first typical symptoms of the Lyme’s infection, fatigue and cold sensation when  bite’s erythema appears, and I haven’t given up them in my whole life.  I was coming to the doctor to check out and search for tachycardia, what finally is a kind of arrhythmia (heart’s pumping’s rhythms disproportions).  However, I was never diagnosed of tachycardia because of when I went to the doctor I wasn’t passing the episodes of punches and disproportions beats and therefore they didn’t appear on the test results…¬______¬ in short.

And everybody said to me “you are so nervous, you are sensible, relax yourself”… an I answered them, “but if I wasn´t nervous and it punched me!” Finally, I learned to suffer it in silence…ahem, why not, finally the lymers always just suffer in silence, like people in hemorrhoids commercials! Maybe it’s because we (lymers) “get used to our symptoms and we naturalize them”…another ERROR!

Who was going to tell us to my family and to me, that all those sensations weren’t nervous or a damn or bloody anything else, that they were little bugs having fun, dancing flamenco with stiletto heel on the love’s muscle.

This fact is calling Lyme Carditis.
And, what is carditis? Well, It’s the heart’s inflammation provoked by some kind of virus, bacteria, parasite or fungus infection.
And how it works? Well,  the Borrelia Burgdorferi, the bacteria who provoked Lyme disease, settles in the heart’s tissues hurt them, inflamed them and collapsed the right function of the heart.

It’s supposed  that when the infection is eliminated, the heart recovers and stop to give signals of arrhythmia and tachycardias. However, when Lyme take so much time in the body, like in my case, it’s possible that the organ remains with sequels.

Luckily in my case it’s never gone beyond since I could be more serious complications. I hope that this continue being like that now that I’m in treatment and the infection must be controlled.

The Lyme Carditis existence’s knowing is so young, maybe it has a year, and is in the two last months when I see more articles movements where they are accepting that this problem is one complication more of the Lyme disease. While, in first place it’s belived that the rate of Lyme patients who suffers cardits is minimal, the reality is that everyday I hear more people’s voices  who are affected by this problem in our ‘sector’.

I let you here an  “Everyday Health”  article’s fragment write by the cardiologist T. Jared Bunch, MD

"...

Lyme carditis and your heart

The early symptoms of Lyme disease that involve the heart can occur as soon as one week after a deer tick bite.

Lyme carditis symptoms include:

-Palpitations

-Chest pain

-Dizziness

-Passing out

As heart disease from a Lyme infection becomes chronic, a few problems may arise. Some people develop chronic inflammation of the pericardium, the sack around the heart. This can cause sharp chest pain that increases with deep breaths or lying down, compared to sitting up. Over time the pericardium can thicken and adhere to the heart muscle. This can cause swelling in the lower extremities, abdomen, and sometimes lightheadedness, shortness of breath, and exercise intolerance.

The most common chronic heart problem from Lyme disease is a conduction system abnormality. The electrical system of the heart normally generates a heartbeat in the right upper chamber then transfers it through specialized tissues to the lower heart chambers. When heart muscle is electrically stimulated, it contracts, or squeezes.

In people who develop Lyme carditis, 87 percent have some degree of electrical heart block, typically in the area of the heart that conducts electricity from the upper to the lower heart chambers (called the AV node).

In half of the these patients, the block can be severe and cause a very slow heart rate that puts them at risk for passing out, dizziness, chest pain, and shortness of breath. With early recognition of the problem and IV antibiotic treatment, the heart block often improves and few people require pacemakers.

Finally, the bacteria that causes Lyme disease can also invade and inflame the heart muscle, a syndrome call myocarditis. This can lead to muscle weakening and abnormally fast heart rhythms.

..."

Full article here

Arrhythmias, tachycardias, carditis or miocarditis, what it’s clear is that  it’s now when I understand what happened in my heart, after so many years, after of those first episodes when I was a child  and terror paralyzed me when I felt those punches trespassing my chest and my heart beating in crazy and disproportional rhythms. It’s now when I don’t feel guilt when I have to spending a time where my kokoro-san dosn’t know properly in what rhythm play the drums and become a bit crazy.

Now, maybe like always but more conscious  of the reality,  I put my hand on my chest and I speak with my heart from deep inside of me. I tell him “Please, continue being so strong, continue resisting like since now, we went through by the worst moments, already there is less path to finish. Continue with me until the end. Thanks for never giving up.”

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Prologue

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There is a life beyond the life what we know, beyond the external one, beyond the one  we are educated to create and believe. A life beyond the fees, faith, materialisms and various foolishness.

It’s the authentic life, the real one, who ignores all this artificial life what we created. It’s a world, an universe, a life full of lives forming a whole. It’s precious and wonderful when we stop moving to contemplate it, understand it, enjoy it and hear it. But it could be hardest and painful when we ignore it, when we leaving to flow with it and when we dedicate full time to the other artificial life, when we stop listening to it.

This life that is a treasure , it’s ourselves, it’s what form us and what we have to search inside of us. Because it’s there,  it exists, it relates with “us”, and I swear to you that I haven’t any doubt of that.

This blog and its name are a tribute to those lives inside of me, who speak to me and who are teaching me so much. To those lives who are suffering so much trying to get that it world isn’t ruined. To those voices of my body.

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