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 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!