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

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

  1. Dear cousing… being family I had heard parts and bits of your story but never before did I understand the complicated journey you’ve traveld. I now can begin to understand what you really went through and what it took you to overcome not only your own limits but also the limitations imposed by such disease. I’m proud of you. I’ve no doubt your story will be an inspiration to many others… I’m already inspired. Thank you! Love you!

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    1. When i started getting bad off with pain associated from That were caused by auto if use disorders yet to be confirmed I was in the emergency room one night with my cousin my dearest relative we were very close in fact I relocated to the state he lived in so I could be near family the medical community where I lived at the time treating me like I was faking and Convinced my cousin I was a drug and attention seeking and I need to be admitted to a psychiatric hospital for my drugs in addition seeking behaviors and I had been sent there by my doctor after I had a central in fart at their clinic and they treated me for a heart attack with nitro and aspirin nothing was Even said about that he convinced my cousin I had been to a doctor or any are 15 times in the 3 days leading up to that your visit which was a complete lie I’d only been 3 times all 3 to that very hospital for the same thing A doctor said that my pain is a symptom of my mental illness am I cousin believed it I haven’t spoken to him since That was August 28, 2017 now I have been given blood work in the new city where I live we moved just so I can get the medical attention I needed and deserved after being tortured for 4 years in Spokane Washington with medical neglect bordering on torture and just found out i have lupus and rheumatoid arthritis. Your story go gives me hope because my Problems All started after my cousin take me to go disco fing in the Winter and I fell on black ice. I have had multiple spinal cord injuries she surgeries Did I actually had to leave the city to go and get because nobody in Spokane when treat me Helen permanently disabled with bilateral drop foot and neuropathy everywhere it can go. I won’t ever get my cousin back but now have hope that i can at least soon be Physically active in the great outdoors you are so blessed to have the family this you do and I see that you know that as well in as beautiful to me God-bless you all thank you

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      1. I am really touched by your story, but unfortunately many of chronic illnesses go undiagnosed and besides the pain that we endure… the price that we pay in a social level is way too high. Things start changing after diagnosis and those people that put us through hell, sooner or later come back to you with regrets and shame, for some of us is too late for a new begging but for others is indeed a new one. I talk about it in my post the pain behind the pain, you are not alone in that, unfortunately is VERY common.
        God bless you and wish you all the best!

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