Do you have trouble speaking ?

Have you ever experienced trouble during your speaking?

I do speak 3 languages and I do speak a lot, but sometimes I feel I can’t talk I can’t speak, like my brain is working and my tongue is not reacting in the correct way.

I was reading online that can happen, and is not a brain condition, my sensation is like my jaw can’t move and I can’t speak. And you maybe you would like to share with me your experience maybe I’m not the only person with AS having this!

I questioned myself, can be stress, because this do not happen everyday, but quite often when I’m nervous or concerning about something is going on in my life.

My solution is, apply yoga breathing and trying to relax, and you ? What do you do ? Other of my concerning is can this be also caused from using some medication? Should I change something in my diet? Should I change my routine? What should I do to feel better?

The sensation I have is feeling trapped !

Let me hear from you and your experience!

Talk to you soon …..

Did you enjoy your summer?

 

 

Hello everyone,

as I promised here I’m, to tell you about my summer and above all to know about yours.

My summer started just after they let us free after the lockdown, I moved to my grandma beach house and I’m still here and I’m working from here.

No bad at all, have the opportunity to jump into the water everyday after 6 pm. During my real vacation I went to Abruzzo region and I enjoyed a lot walking and exploring new historical towns.

Because remember exercise is good for people with our diseas. So my summer was very simple, working from home, walking swimming and enjoying my family!

What about yours?

Comment here ūüôā

Covid 19

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….

Sometime I come back ….. Welcome back to me !

Hello everyone,

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

 

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.

 

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.

 

Ways to Ease Ankylosing Spondylitis Pain Chapter 2

If you liked my last post … let’s follow :

Keep Moving

moving

Your number one defense against spondylitis pain and stiffness is to get moving. Rest and couch-potato inactivity allow your joints to start fusing together, which is what you need to avoid with ankylosing spondylitis. Ruth Kadanoff, MD, professor of rheumatology at the Loyola University Stritch School of Medicine in Chicago, says, “The type of movement is not as important as the frequency. You need to be doing some type of exercise twice a day. The best exercise is a low-impact type of exercise like walking.” Make simple exercise a daily habit, just like brushing your teeth, and you‚Äôll be well on your way to relieving lower back pain.

Get Physical

physical

The next step after correcting your posture is to follow a more comprehensive physical therapy program for ankylosing spondylitis relief. “We now know that spondylitis also includes an increased risk for osteoporosis and heart disease. That means you can really benefit from a complete program that includes aerobic exercise, range of motion exercise, and strength training,” says Papchristos. Besides targeting lower back pain, bone health, and heart health, a physical therapy program may include deep breathing exercises to prevent your rib cage from stiffening.

 

Take to Water

Gym

Exercises that are good for lower back pain and spondylitis on land are usually even better in a pool. Swimming is a great low-impact aerobic exercise for ankylosing spondylitis. “Studies consistently show that water exercises are the best types of exercise for spondylitis pain and stiffness,” says Papachristos. A survey published in the Scandinavian Journal of Rheumatology illustrates this: Researchers found that the most common exercise for people with spondylitis is walking, but the most effective for relieving pain and the most enjoyable is exercising in a pool. Many gyms offer water exercise classes, or you can ask a doctor or physical therapist for suggestions of exercises to do in a pool.

 

Learn a Mind-Body Exercise

tai

If you’re mostly familiar with cardiovascular and strength training, exercises like tai chi and qi gong may seem foreign at first, but these wellness disciplines could help you find a better balance between mind and body. Mind-body exercises can help you learn to listen to your body, reduce the stress of spondylitis pain, and avoid injury. According to the National Center for Complementary and Alternative Medicine, these exercises have been shown to improve bone health, balance, prevent falls, and make your heart and lungs stronger ‚ÄĒ all good things for anyone with ankylosing spondylitis pain and stiffness.

Thanks to : Chris Iliades, MD

Ways to Ease Ankylosing Spondylitis Pain Chapter 1

 

If you like me are living with ankylosing spondylitis, you know the back pain and fatigue that are hallmarks of the condition can be unpredictable. But fortunately, there are many approaches ‚ÄĒ besides simply relying on medications ‚ÄĒ that you can take to ease spondylitis pain and stiffness and move more freely. Most of these ideas are free or inexpensive, and even enjoyable to boot. You‚Äôll find that the emotional boost you get from taking these steps can be as great as the physical improvement.

Make Mornings More Manageable

morning

If you‚Äôre like most people with ankylosing spondylitis, your lower back pain and stiffness is worse in the morning. “When joints are stationary for a time, the joint fluid actually thickens a bit, like ketchup,” says Sturdy McKee, MPT, physical therapist and CEO of San Francisco Sport and Spine Physical Therapy. ‚ÄúYou can shake or stir your joints through repeated movements ‚ÄĒ any repeated movements.‚ÄĚ Talk to your doctor or physical therapist to create a morning routine of gentle motions that can lessen spondylitis pain and get your joints moving.

Hit the Showers

Shower

When the fluids in your joints get thick and stiff, spondylitis pain gets worse. A great way to get those fluids moving is to warm them up with a warm bath or shower, which loosens up your muscles and makes it easier to exercise. In fact, you might find that doing some exercise in the shower can help get you going in the morning. You may also find that doing your posture training for ankylosing spondylitis after a warm bath or shower, when your body is warmed up, is easier for you.

Correct Poor Posture

posture

Poor posture ramps up spondylitis pain and stiffness. Minimize lower back pain with what medical experts call “posture training:” Think tall by keeping your head balanced and your back straight at all times, and practice standing with your back against a wall and prone lying, which is lying face down on a firm surface. A physical therapist can show you the ropes. “Posture training should be done for about 30 minutes every day, but you can break this time up into 10- or 15-minute sessions,” says Angelo Papachristos, a physiotherapist at St. Michael’s Hospital in Toronto, Ontario, Canada.

Special thanks  to : Chris Iliades, MD

Food/ Diet & Ankylosing spondylitis

index

 

Whether a person is affected by a chronic illness or not, there are some straightforward guidelines that if followed, would lead to improved health and well-being for almost everyone. Both calcium and alcohol affect the strength of the bones, and it is a well known fact that people with spondylitis are already at higher risk for osteoporosis, a dangerous thinning of the bones that can lead to fractures. Following a diet with adequate amounts of calcium and vitamin D will help reduce the risk of osteoporosis. Alcoholic beverages can also weaken bones. Consuming more than two alcoholic drinks per day increases a person’s chances of developing weakened bones. In addition, alcohol mixed with certain medications can cause serious side-effects to the gastrointestinal tract and to major organs such as the liver and the kidneys. It is important to find out from your doctor whether any of the medications that you take affect how your body uses what you eat. For instance, some medications cause a person to retain sodium, while others cause potassium loss. Methotrexate can lower folic acid levels causing a variety of adverse symptoms which can be offset by taking additional supplements. Whatever you decide, expert agree that there are basic guidelines to good nutrition, which are: Eat a variety of foods that make you feel good – avoid those that do not. Eat plenty of vegetables, fruits, and whole-grain products. Use fat (especially saturated fat found in animal products), cholesterol, sugar, and salt in moderation. Drink 8-10 glasses of water a day. Most people receive daily requirements of vitamins and minerals by eating a well-balanced diet, but others need to take vitamin supplements. Avoid alcohol or foods that can interact with your medication. Talk with your doctor and/or pharmacist about potential interactions.