The day we had our the last cigarette.

It was Easter weekend 28 years ago. My parents were living in the countryside because of my father’s job and I traveled to visit them.  But let me start with what happened the night before this trip.

One of my best friends had a party at her house, I think it was for her birthday if I am not mistaken. I was having fun as usual, and another friend told me to go with her to smoke a cigarette , we walked to the entrance of the house, sat on the staircase and she said take a long sip, I am going to read your cigarette. She was a very funny girl I remember laughing and said ok “tell me my future” she took the cigarette from my hands after I took that very long sip, looked at the ashes and she said “oh shit, be careful! I don’t know what is it but there is something really bad that is going to happen, please be careful” she looked very serious but I didn’t take it serious at all.

I arrived to the town, and went to my parents house (Now that I think about it, I don’t remember how did I get there, whatever!) I remember that we had lunch, prawns, and  I also remember that I wasn’t happy to be there, I wanted to stay in Caracas but I had to go visit my parents. I asked my father for the car keys, I wanted to meet up with some friends from University. I was wearing my new Levis and new brown Neutroni boots, I remember that clearly because I wanted them for so long, I also got a new bikini. I got into the car a red Toyota Corolla and left. I recall getting to a place but my friends weren’t there and I decided to go to another place that was a bit further away. I stoped in a red light and I started smoking a cigarette, the light changed to green I put my foot in the gas, I remember being angry (not sure why) and I remember thinking that I had enough of smoking “I have to quit”, opened the window and threw the cigarette out, put my hand on the steering wheel and suddenly I totally lost control of the car. It was like sliding or flying. It felt like it had its own life and it is doing what it wanted, I couldn’t gain control back. I knew that if I didn’t find a way to stop it I will end at the other side of the highway and I might kill someone, I had to do something, it was fractions of second! I saw a light post and I knew that I needed to hit it and most probably will die but it was better than going to the other side of the highway. I used the manual brake but I didn’t see the crash happening, I might have closed my eyes but that noise haunted me for too many years, even now sometimes I can hear it clearly. It was the sound of death and pain. I remember opening my eyes and feeling trapped inside the car, I realized that I was alive but trapped, the pain was so strong but then it went numb, I couldn’t feel anything, I also remember that it was hard to breath, it felt like having a very heavy weight on top of my chest. I don’t know how much time passed but I remember random faces, I remember people trying to take me out, then I fainted, then I got back but fainted again, then I felt my body lying on a very hard surface, I realized that they put me on the side of the highway they might have thought that I was dead because when I opened my eyes there was a young guy looking at me, I cannot remember his face I would love to remember it but it is all so foggy! He said “she opened her eyes, she is breathing”, He, I guess with the help of others, put me inside of a very small car I think I can remember a Chevette. His voice was sweet and gentle, very sweet, he wouldn’t stop talking he told me to please do not close your eyes, to not fall asleep, and I tried I did try for him because he was so sweet and gentle, but I couldn’t keep my eyes open. I promised him that I wont fall asleep but that I couldn’t keep them open. I felt the car stoping, I saw myself lying down in a very tiny bed, but then I saw trees and they were on top of me and now I am lying in the bed looking at the trees from that bed. I asked where I was, I thought he was taking me home, but his voice wasn’t there anymore and I instantly missed him he made me feel safe and he wasn’t there anymore, now I am surrounded by voices that I can not see their faces I felt scared because he wasn’t there anymore and he was so sweet and gentle, now it is a very cold voice that answers “you are at the hospital”, I just said “shit” and thought “I am fucked”. Now I see my body from above lying on a X-rays table, but then I don’t see it anymore I feel it, I am lying on the X-rays table and I can hardly breathe, it is so hard to breathe. There is a guy sitting on my right side but I can only see his back. He is asking me what my last meal was, I told him “prawns” and thought “really, How is it important???” at that point I realized that I peed my Levis, and I felt so embarrassed and humiliated. Now I just want to cry, I just wished for my dad to be there with me, he was my personal hero I knew that he will fix it, he always fixed everything!. I asked him to please call my dad and I gave him my father’s office number. He said “this number is not from here it is from Caracas (another city)” I told him my father’s name, everyone in that little town knew the name of the admiral in charge of the town. He started screaming, calling names.

Now I seriously can’t breathe, and I am trying to fully relax and to not panic because every time that I feel scared less air comes inside of my lungs, so I have to stay calm… and then I hear his voice, “vamos Caraotica tu puedes, tu puedes” (come on “Little Bean”, you can do it, you can do it). He always called me Caraotica when I was a little girl, and I loved it, I loved it when my dad called me Caraotica. I agreed with my head.

They took me into the surgery room, I see my mother’s face and doors closing on her face she stayed out, she is panicking. “shit! and it is because of me, it’s my fault”, I tried to give her a smile, but I think that I failed, I don’t know. My dad is on my side, he wouldn’t go, the doctor gives the order of cutting my Levis, I said “no! don’t cut my Levis!”, he said that if they take it off I will be in so much pain , it told him that I didn’t care about the pain, they took it off, my dad kisses me he said “pelea Caraotica tu puedes!” ( fight Little Bean, you can do it) they took my arm, I can see the needle going in.

I don’t know where I was, but i wasn’t liking it, I was trying to come back, it was dark and on my right hand side is the entrance to the place I am in which looked like a tunel and this lady, friend of my family is at the entrance looking at me, I thought “I am gonna tell her to pray for me, I don’t want to go”, but is she reading my mind? she looks at me and says “don’t worry, don’t go anywhere, stay right where you are.”

I feel like I am spinning, spinning very fast, but there are only colors, I am color, I know that I am getting recharged. I know everything, is like I do have all answers inside of my head, there is no pain, no sadness, I have so much peace.

Now I am in the room, I am looking down, I can see my dad besides my body standing on my left side, he is caressing my leg where I have a huge bruise, I can see my body in that bed. But I don’t know if I want to get back in, I have free will, I can choose, and getting back into that body is gonna be so painful, I don’t know if I wanna do that… but love came through, I see my dad and I see that amazing wave of love coming from him, and suddenly I can not only see it I can feel it, this amazing amount of love towards me, it is so warm and profound, and I can not do this to him, I can not leave him.

I hear voices screaming, they always repeat the same “wake up, fight”, “we cannot do anything for you, you have to fight” “wake up Renata, wake up” But I cant open my eyes or move, I have so much pain. Finally I open my eyes and can see my aunt besides me, she is so pretty, she looks so sad, I press her hand and she is all smiles and tears, it made her so happy and I feel happy for her, I really loved her so much! She said “Now I cannot smoke anymore” and laughs.

My aunt is not in physical presence anymore, but I know where she is. I was there. Now she is the one that knows everything, she has all answers inside of her head, she is not in pain, she isn’t sad, she is at peace. We can still feel her love.

She made a promise that day of easter weekend, she promised that she will quit smoking if I stay alive.

And those were the days, the days when I died but stayed alive and we both had our last cigarette.

My “Masters”, my fountains of infinite pride and love.

There were few motivators when I first started taking control of my life and body after having been diagnosed with AS.

In this post I want to thank and in a way honor them.

It was a weekend and we were leaving in Istanbul, it was freezing cold and snowing like never before. My husband wanted to go skiing, I didn’t want to because first of all I cannot ski only snowboarding and every time I went I couldn’t move from my bed for days, sometimes even weeks, I had to take VERY strong painkillers, cortisone and my whole system collapsed for weeks. So I said no, I don’t wanna go… at that exact moment my middle son Christian came and hugged me and said “Mami I wish so much that you wouldn’t have so many pains and aches, because you are so fun! We love to play with you but I know how much pain you have afterwards, that’s a shame…” He didn’t noticed, I just (as usual) made a joke about it and we all ended up laughing, but the truth is that I had to hide in my bathroom pretending that I took a shower because I couldn’t stop crying, I wished SO MUCH to be able to be more active and to be with them! But I didn’t know at that moment what to do.

After finding my way around, and starting to get control of my body, I had a breakdown. I felt guilty for being “selfish”. But one morning…

This time was a Saturday morning. During those days on weekends I used to wake up at 6 am, make breakfast for the three kids, took my board and went to the beach for a quick run and to do paddling, when I got back the kids just woke up and were having breakfast. Then we decided what they wanted to do and we did… Well that morning as usual I was just getting my board to put it in the roof but my eldest son walked into the parking when I was thinking about my “selfishness” and he said to me “Mami I love it how you look now” I looked at him surprised and ask him what he meant I thought he was talking about my tan and been more fit. He said “oh no mom, yes you look more pretty now, but I was talking about you! You look happy and I do not remember when was the last time that I saw you happy” My jaw dropped, I couldn’t believe what I just heard! He also said that seeing me happy he feels happy too, I hugged him so hard, and kissed him and promised him that from now on I will always be happy. And that has been my direction since then, my search for happiness.

That search wasn’t easy nor fast, and there were very tough days. Days were I wondered if I was doing well or regret my past, and blamed myself for things I did or didn’t do, and…

It was a Friday and my little girl, Nicole, loved Fridays! After school when she didn’t have a play date or a party we used to take long bath together, I will massage her feet and do “beauty treatments” to her. And there we are, in the bathtub, I had a horrible and sad day before they all came from school a day filled with regrets and suffering for the past, and out of the blue she looks at me and said “mami I am so happy that you are my mami! And that you have always been a stay home mami, because I am who I am just thanks to you and I LOVE who I am” Can you imagine how I felt??? This tiny little miracle of mine, this gorgeous pretty little thing that I brought into this world, said the right thing at just the right time. I love her so much, I was and I am so proud of her and having heard from her tiny little lips that it is thanks to me made me forget all the crap that I was into that day!

There are SO MANY other stories that I could share about my three miraculous and beautiful “masters”. Yes, I brought them into this world but they have kept me alive and filled with love, joy and yes fun!

They are my reason, my pride, my world and Universe and…

I thank whatever Gods might be for my three beautiful fountains of infinite love.

To my kids, Marco, Christian and Nicole.

Ankylosing Spondylitis has probably turned me into an “Endorphin’s junky”!

People who don’t know me, say that I have to have a problem, that I am obsessive, that how is it possible that exercise has such a big role in my life, that I might have an eating disorder, that I am obsessed with my body and appearance, they have also said that I have a lover because they never see me around. What do I say to them? Nothing. Over the years I learned that the way a person speaks, acts or reacts says more about themselves than about me. It is like when you look in a mirror and you see your own reflection. There are many others that really want to know why, to those I tell my story and I have to say that most of them get inspired and sometimes they even end up giving me a call trying to get some advice, and I love it. I am always in the seek of playmates! And come on, let’s keep it real, I am 46 years old, with scars, three c-sections, I have cellulitis and stretch marks training hard is not gonna make me get any sexier nor younger.

When I just got diagnosed with AS the rheumatologist prescribed me really strong medicine. He advised me to try to engage in any kind of physical low impact activity, but my body was in so much pain that I didn’t even consider it. I started taking medicine but after few weeks I felt worse, the side effects were horrible for me, yes, it took the pain away but it always came back and on top I was feeling emotionally destroyed! Low impact activity as the doctor suggested, was way too boring for me and I am the kind of person that needs challenges, the bigger the better, that is the reason why I first started with running and eventually moved into triathlons.

The first triathlon was, to be honest, just for the challenge I didn’t even considered that it will be part of my life at all, but after I finished I realized how much I loved it. When I am training my pain goes away, I sleep so much better, and it makes me feel young and healthy! on top of it keeps my body strong, I get to connect with a community of focused, healthy people and being part of it helps me forget everything. So yes, I do have a problem, I carry AS inside of my body for the rest of my life and triathlon is the only natural way that I have found to fight the pain, and stay healthy, active and focused.

I don’t know for how long I will be able to keep it going, I have no idea but as long as I enjoy it and my body allows me to, why will I stop? I am a happy me.

Even though it is said that there are not enough scientific evidences to prove the role of endorphins some reports affirm that when you exercise your body releases endorphins, these endorphins interact with receptors in our brain that reduce our perception of pain and act similarly to drugs such as morphine and codeine. In addition the secretion of endorphins leads to feeling of euphoria, modulation of appetite, release of sex hormones, and enhancement of the immune response. I am not a doctor nor a scientist, but this is exactly what I feel when I train and lets not talk about the race days… it gets even higher! I might have become an “Endorphin’s junky”.

Exercise has worked for me and for so many others, give it a try, look for an activity that helps you get your own dose of endorphins. I know that it is hard to start, but there is always a reason within our hearts that will help us get and keep motivated. Get into your heart and look for it, and don’t stop until you make yourself proud!

Ankylosing Spondylitis and the pain behind the pain.

It took very long for me to get diagnosed because of the Polytraumatism that I suffered in the past. Every time I went to the doctors they found something new, from Piriformis Syndrome, to herniated disc, dislocated femur head… you name it, I have it! But the worse was the pain behind the pain.

Not been diagnosed caused a big problem in my social life, and when I say social it included few family members, some friends and even my marriage.  They don’t get you, they think that you are acting like a spoilt brat or that you are just trying to manipulate and control others to get your way around. The biggest problem of it is that there is a point when you start believing that you do, that you are indeed a crazy manipulative spoilt brat! At this point you start to stop looking for help, you try to not complain, and you loose yourself into everybody else’s “agenda”, you become a pleaser. I did.

While trying to “keep harmony” pleasing everyone and doing things that I shouldn’t have done I hit bottom rock. I lost the faith in myself, I got depressed, I lost the joy and the love for life, the only thing that kept me going were my kids.

After being diagnosed I realized what I did, I lost myself, I lost my self-esteem and stopped believing in me, I let myself down and I was the only one responsible for that. The day that I finally realized it, my life changed, for good! I realized that I wasn’t crazy, that their lack of empathy was the cause of my biggest suffering. I tried to fit in and pleased people that I thought loved me, but they loved themselves way too much to be able to empathize with someone that wasn’t yet  “labeled” with a disease.

My life totally changed, first with the help of a psychologist, then with alternative therapies. I started getting control of my life again, I totally erased people that I not longer needed in my life, I started living for me and for the ones I love and showed me their love during tough days. My marriage totally changed, Im happy to say that I have now the most caring, loving and empathic husband that I ever dreamed of having, Im now surrounded by people that brings positiveness, joy and encouragement into my life.

I enjoy life, I participate in many different activities, my social life is very active but I respect my limits, I’m not going to drink or eat something just to please others, I wont go to places that I know are not going to be comfortable for me, sometimes I have to cancel appointments or leave places early because of my fatigue or pain. Now I only do what I want to do, be with whom I want to be and share with whom I want to share, AS has taught me to value my time and it is priceless. Life is precious and I know its value.

I’m a mother of three 20, 18 and 13 years old, until today they joke about me. When they were little and I took them to the park, a restaurant or anywhere else and I saw a kid alone or with a sad face I always told them “look at him, he looks so sad and is there all alone, why don’t you go and try to be his friend?” And they did, and over the time they did it by themselves, they said “Mami wait Im gonna go there, look at the kid he/she might not have friends…”  Now whenever we are together and they look at someone alone they say Mami look poor thing why don’t you go and try to be his/her friend? for their embarrassment…  I cant help myself, I do it!

I do believe that the biggest super power a human being can posses is the power of empathy. An empathic human being will always have the power of changing the world into a better place.

AS can be VERY difficult to diagnose because the condition develops slowly and unfortunately there is no definitive test, in many cases confirming a diagnosis is a long process that can take years. In the meanwhile, listen to your body, value and respect yourself. If you don’t do it, nobody will.

Just one more thing in case that my husband reads this post… The above comment about you is just for encouragement purposes, there is still room for improvement! LOL. Love you Dietrich!

 

 

After so many years of pain and injuries: “You have Ankylosing Spondylitis, and there is no cure”

It all “started” 7 years ago, but because it all might have started much longer ago I didn’t even care or noticed, nor even the doctors.

7 years ago I was into a lot of pain, so much pain! I was at home hosting my brother’s 40s birthday party and I couldn’t hide the pain any longer, so I went to my bedroom and closed the door,  thinking and wishing that I will be better after some stretching. I got on the floor and then I couldn’t move, I couldn’t get back on my feet, even breathing hurt, I tried to scream for help but the pain was too much plus the door was closed and the crowd were to far from me. Thanks God for my old mate Habibi, my Golden Retriever, he started barking and help came around. It took my brother, my father and my husband to take me into my bed. Every time they tried to move me I screamed at that point I was 38 years old and I have to say that I am not very easy to cry for pain because everything started way too long ago.

I was 19 when I had my first car accident. I had a pneumothorax causing a lung decompression, broken hip, broken diaphragm, broken femur, broken ribs, liver and spleen damage. I went into coma for about three days. Doctors didn’t expected me to come back , but I did and the prognostics to go back to a “normal” life they said that it will take at least one year. Three months later I was back on track! back into my ordinary life. With a huge scar on my left leg and my stomach, but alive and walking.

2 years later I had the 2nd car accident. This time it wasn’t that traumatic, only few stitches here and there and whip syndrome. My face was completely swollen, and once again I got back to “normal” in a couple of days!

The 3rd accident wasn’t in a car, this time it was a horse accident. The beautiful animal went crazy and when he hit the end of the road and the gate was closed he brake to zero, lifted the two back legs and that was it! on the floor with a broken arm, in 4 pieces!

I always recovered so quickly and was able to keep my life so normal that I didn’t even liked to complain about pain, scars, or anything related to any of this situations, I have actually always felt guilty and embarrassed for having put my whole family, specially my parents and brother, into so much worry and suffering. But that day 7 years ago when I couldn’t get back into my feet and was lying on the floor I was scared, so freaking scared!

I went to the doctors but they couldn’t find anything different, and I have so many things as result of all my injuries, but this time none of them were the source of this specific pain. I don’t know how many doctors I went to and I am conscious in the fact that I’m not an easy patient, I have so many injuries, syndromes that sometimes is hard for them to narrow things down. On top of everything we are an expat family, we keep moving from one country into another one, and with three kids, it was hard to find doctors and once I found them I had to move again…

Finally after keeping a very detail written record of my pains and narrowing down every single detail I read about an autoimmune disease called Ankylosing Spondylitis, I felt my stomach twerking and a feeling of fear that I never experience before, not even during those days with the accidents. I asked around and got the name of a rheumatologist. My fear was confirmed, I had sacroiliac joint damage on my left hip caused by Ankylosing Spondylitis. At that point I was in so much pain, on top of everything the weather of the city that we were living at that time didn’t help at all!!!! The doctor told me that it was no cure for this disease, prescribed medicine and suggested to buy a walking cane because I couldn’t walk properly anymore.

I remember faking being strong, talking about what will I do and garbage, just to calm others down. When I got home and being alone I cried my eyes off, I felt like my own body was letting me down, how come after all I have been through this can be happening to me now? Somehow I managed to put myself back together and after few days of thinking I decided to leave that country. Spoke to my husband and we took the decision that I will leave with the kids somewhere “safer” for me until he could get relocated again, hopefully in a better place for me to be.

There “my journey” started. I found a Chiropractor, he was recommended to me by my neighbor (I will never forget his name Dr Alex Keith, in Lake worth, Fl). She was a very active lady and I used to see her running everyday, one day talking about it and how much I would love to be able to run she recommended me a book “the non runner’s marathon trainer”. I devoured it in less than two days. The third day I decided that I WILL run a marathon! (42 km) and the training started. The only problem was that I needed to be able to walk longer, so I started to walk everyday, my goal was to everyday walk at least one minute longer than the day before, then I went back home and put ice packs everywhere to easy the pain. I had no help, no family around, a cleaning lady that came once a week to help me with the deep cleaning, three kids and had to go to university in order to keep my visa, the only time to train was literally midnight after having finished with the kids, chores and homework, yes homework! So it was, every night I went out, every night one minute longer.

As a first stage I planned to run a half marathon (21 km) within the next three months, the day came and it took me almost 4 hours actually 3:59 my goal was to do it under 4 hours, and I did it!!! Unfortunately I hurt myself really bad. I kept my running hidden from my chiropractor, I knew he will disagree and tell me to stop… I went to his office three days after the run, he wasn’t very happy and found hip bursitis in both of them, I got banned from any kind of exercise that provides impact on my joints for at least 6 weeks. I was so upset, and scared of loosing all what I had achieved, but he told me to run in the pool with a float belt so that my feet won’t hit the ground, and suggested me to star training for triathlons. I thought that I was way to old (40 years at that time) He asked me if I knew how to swim and cycle, and coming from Venezuela swimming is not an issue but I had to start from zero I didn’t swim in years, but once in the pool I said to myself why not? cycling wasn’t an issue even though the pain in the position can be tough, I managed it.

I registered for my first triathlon which was within the next 3 months and started training without telling anyone, not even to my husband, I was training with a program that I got from the internet. The day came and I was so scared! the night before I decided to call my husband who happened to be in Turkey ( the country from were I left) and we were (me and the kids) in the USA, told him about, he was so nervous and as a joke I told him to not complain that at least now he knows where to go and claim the body! He didn’t laugh too much…

Well, long story short, I did it!!!! I finished it!!!! and the feeling was AMAZING. Since then I have never stoped, it doesn’t  matter if I have a triathlon coming up or not, I keep training everyday, 6 days a week.

It has not been easy, AS is a very tough condition when I have the flares I have to slow down, the disease has now taken over my right hip, the symptoms are harsh, is painful, everything hurts, the fatigue is (to me) the worse part, sometimes I have to skip sessions, focus only on swimming, or only on cycling, or running… But the hardest is learning to deal with this disease, because is so not deeply known, not every patient has the same symptoms. It is hard to meet doctors with enough experience on it, and even harder to meet people affected. To listen to other tell their experience, what do they do, how do they deal with all the symptoms, until today I have not met one and this is why I decided to “come out”, to talk about my journey, to share what I do, how do I deal with it, and I hope I can help or inspire at least one person out there. To help them know that it is not over, that you don’t have to give up! that where there is a will there is a way.

After my first triathlon I got my first tattoo, I took a sentence from a poem of William Ernest Henley, it says:

“I thank whatever Gods may be for my unconquerable soul”

I want to be active and as healthy as possible, I want to be a present mother and be there for them whenever and wherever they need me, I want to be a supportive wife, a helpful therapist and an if possible an inspiring human being and not to inspire pity. I will keep pushing myself as long as possible! There are some people that I haven’t met yet and when I do meet them I need and want to be active and healthy so that i will be able to enjoy them, they are my future grandchildren! I still have so much to live and experience and I’m not willing of giving up!

THIS DISEASE HAS NOT CONQUERED MY SOUL, DON’T LET IT CONQUER YOURS!

Renata Santos Continue reading “After so many years of pain and injuries: “You have Ankylosing Spondylitis, and there is no cure””