Talking about me and AS

motivation-1389126_1920.jpg

 

About 2 months ago, a person that I like and respect a lot contacted me, he wanted me to give a speech to a public of about 300 people. But he was smart he didn’t tell me that my audience was so big, and he knew I wasn’t talking anymore so often in public.

I accepted his invitation even it was hard time for my health, the comorbidities for my AS are bothering me a lot in this period, but I wasn’t afraid, and I faced 300 people in a conference room I went through a guided speech interview and I talk about me and my disease. It was the first time in front of my husband, that was there.

Some tears came up when I remembered the hard time with the pain, and the fear of do not walking and be not any more auto sufficient. I talked to that public and the public responded good people came over to talk to me asking me question, I went straight to their feeling just being me and tell them about my story.

This is something I wanted to share, and I want all of you that land into my page to do not be afraid and fight the diseases. Fight, we have treatments, but above all we are lucky because we can still do many things.

Enjoy Life.

 

Tango and Ankylosing Spondylitis

 

f5326d4e-371f-4652-802e-9b1015456c26

Hello everyone, has been a while since my last article, I know but my life since I’ve got married is so full that I spend less time by the computer.

Today I’m back to write you about my experience trying to approach tango classes with my husband.

I want to touch to 2 point in my article that people with rheumatic disease can know very well.

  1. When you have a rheumatic disease usually people loose their partner and friends, me with a rheumatic disease I got married so let say I won on this! ūüôā¬† Regarding friends, I understood which one is worth to take with me!
  2. The second point is very close to point one is about love, believe me if it is hard for a couple without health problem think about me how hard can be, but you know what you have to believe it and trying to grow day by day with your partner. Now you are thinking so what about Tango…….

Here it start my today blogging, one of these bad period that everyone have, my husband look into my eyes and said what about thinking about having tango class together, my first reaction was oh my God, my husband the one who had so much hard time to dance during the weeding is asking me to go to tango class? It was a MIRACLE. Than few seconds ready I start to activate my brain and I thought what about if I can’t if my body will be sore or I’m so rigid because AS that I will look silly… But I already I said yes to him the only thing was trying and see if those classes can fit for us.

At the end of everything I can say the class are amazing, people are amazing, and after 6 months we are keeping going to class together, we love to rehearsal at home we love the feeling that we have dancing together. Tango class is our moment, even I’m not good as my husband has reveled (he is one of the best in out beginner class)¬† he is there with me to hold me when I can’t make on my heals.

So tango, in my opinion can save your relationship with your partner, can teach you a right posture and above all makes you feel good and connected with your partner.

 

5 Things People With Rheumatic Diseases Want You to Know

 

Pilates

 

 

  1. Just because I look fine and I smile doesn’t mean I’m: I know I look ¬†wonderful the expression of health… I call it cortisone or biologic!
  2. Mine is not just a pain and ¬†rheumatic diseases are not only related to old people : I know when I say my back hurts or my legs or any part of my body hurts you say c’mon you are not old
  3. A nap some days can help me do not make fun of it:¬†there are some ¬†days that i really need a nap I need to rest my entire body, and you thing I’m spoiled!
  4. Be on a diet or taking more pill will not cure me: only few can understand that i be on a special diet such gluten free, vegan or taking all the pills for arthritis pain will cure!
  5. My pains affect not only me but everyone in my family: my pains affect all the people that live with me, because ¬†they have ¬†to¬†deal with me in good or bad! That’s why mom and dad can understand you but make sure you choose the right husband like I ¬†did ūüôā

 

5 Tips to travel this summer for people with rheumatic diseases

woman meditating on tropical beach in the caribbean

Vacation for ¬†everyone is relax, for us with our diseases must be only ¬†relax…. is that true?

The truth is  that a vacation has to be spent  at the best, no matter if  we go  to the beach, to the mountain, to visit nice  cities  around the world.

What  do we have to remember:

  • Don’t forget ¬†your medication and ¬†have a certificate that state you have to take them. There are some airlines specially low cost that can give you problems in case you carry biologics treatments. Remember ¬†your medications and all your papers must ¬†travel ¬†with your carry on.
  • If you ¬†book a long trip make ¬†sure you can reach your final destination maybe in more than one step ( i.e. I had to go ¬†from south Italy to Guam I decided to have ¬†a stop over in South Korea so I rested and I visited Seul and follow ¬†my trip) Instead ¬†to travel more than 26 hours ¬†I traveled half.
  • If you travel by plane or by train choose an aisle it will be ¬†easier ¬†for you to stand up and move. You know ¬†you cannot be in the same position for long.
  • Ask ¬†for ¬†assistance at the airport at the train station, where ever you are and you go ¬†is your right they will make your ¬†trip easier and help who is traveling with you do not ¬†get stressed during ¬†the vacation.
  • Make plan before ¬†to enjoy every single day of your free time. ( make sure all the opening and closing time, what to see, where to eat).

Ok then so now ¬†you only need ¬†your ticket and you are ready ¬†to go… Enjoy your summer!

Partner or not…. “Diseases the problem”

Marriage-Infographic-2

Hello  everyone,

my post ¬†today is regarding us with rheumatic diseases but even regarding all the people with ¬†rheumatic diseases, they can be women or men doesn’t matter.

I read ¬†in a lot of ¬†forum that couple ¬†broke up after one of the partner get sick and need help or just need ¬†to be understood. This is ¬†so bad and of course upset us so much….

But at the same time ¬†we can realize that the person we have ¬†chosen is not the right one, rather you got married ¬†in a church or not ¬†the sentence “for better or for worse in health and disease” ¬†is completely forgot from who in the couple is not sick unless the love is ¬†REAL and ¬†DEEP.

So what to  do ?

be focus on us  try to be better as we can and let him or her go we do not  deserve more pain!

Another advise ? I’ve got married this year at 42 ¬†years old, and my love ¬†took ¬†me and my pain in one ¬†shot, he knows it can ¬†worst but he knows i’m a warrior.

Be a  warrior be focus on you and  if your partner is not  good to be next to you, just CHANGE IT !

Waiting for your comments…

Wish you a flare free week.

 

Birth Control for people with rheumatic diseases

 

MiracleBirthControl

Someone  in private messages asked my opinion on birth control and  rheumatic  diseases.

As a patient as a woman this  question make me think a lot.

If I have to follow what is published online  i get lost, the only thing i can say and this is just my opinion is trust the Rheumatologist  and  the the Gyno, that sometimes can work together  and advise the patient for the best.

Probably these 2 Docs can advise  on the best birth control for us without give us others comorbidities.

If you want to comment or give me your personal opinion please  do it!

I will be happy to publish your comments.

I wish you a flare free week.

 

A new challenge to live together. Rheumatic diseases explained to children

Dear friends,

I know for the past ¬†2 years I wasn’t present that much, is my fault my busy life with my AS.

Today I’m so happy to share with you this italian project with subtitles in english.

Enjoy and spread .

Thank you

Adriana