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!


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