Everything started with a seasonal flu!
How many of us were thinking that! Me for sure….
After few weeks from the China Corona Virus Alarm, Italy my country was hardly hit it! Our family in Italy and all around the world was listen to the scary news we all went into a deep lockdown and our everyday life has changed.
The day that everything changed for me was March 9th 2020 all my routine all my habits all my dear one far away. All the hospital here in Italy were super busy taking care of Corona Virus Patients and us ? Patients with Rheumatic Diseases? Oh well, I personally I was lucky my Rheumatologist and my family Doctor answered to me all the time for any need! And you not only in Italy all over, I would like to hear from you, Please live your comment…
Talk to you soon….
yes sometimes I come back. Has been a rough period, no time to dedicate to my blog, because I have to work has just like everyone else and with the disease even my wonderful husband helps a lot is almost impossible to dedicate time!
I’m scheduling new blog’s articles where I can tell you about my personal situation with this worldwide pandemic situation.
Hopefully you will like it.
I want to say thank you to all the people they where keeping writing me even I wasn’t posting for long time.
I see you soon online
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.
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.
- 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! 🙂 Regarding friends, I understood which one is worth to take with me!
- 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.
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!
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.
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.
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 .
EFCCA : Survey on Biologics & Biosimilars
If you think that is interesting, please share and take few minutes for the survey.
If you want to express your opinion in English, Spanish, Italian, French, German and Greek just click and partecipate at the survey.