SEPTEMBER – RHEUMATIC DISEASE AWARENESS MONTH -( RDAM )

Rapositivehub.com supports the intent of this worldwide awareness campaign which is to improve the public’s understanding of rheumatic diseases, like RA and others, and to advance the health and well being of the millions living with these diseases in the world.

This year’s theme for RDAM is My Disease May Be Invisible, But I’m Not and will feature the voices and experiences of Arthritic Warriors who live with rheumatic diseases.

We @ rapositivehub.com amplify patient stories, the hope is to increase understanding and awareness of what it is like to live with a chronic disease that can sometimes feel “invisible.”

This encourages us to work together, speak as one voice, and to help educate the public about the realities of rheumatic diseases.

So, we @rapositivehub.com will be sharing various articles, stories, links to promote awareness during September 2020.

You Can Make a Difference…You too can get involved. Let us drive more awareness of rheumatic diseases among st ourselves and our local communities .

You can share your story, views by sending an email and it will be uploaded on this website…

Let us help each other to spread positivism and good health in these difficult times!

Stay Safe …Stay happy!

 

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ARTHRITIC WARRIORS NEED TO LEARN ….TO RIDE THE WAVE OF GRIEF……BE IT PAIN OR A PERSONAL LOSS!

With the peaceful passing away of my Iron Lady..my Mom this week..I had a flashback of memories related to my diagnosis phase and the journey till date, which I felt like sharing…and could be an inspiration to all!

I clearly remember the day I was diagnosed with RA the first thought was how I am going to disclose it to my Mum! I knew she would be disturbed and never be able to accept it.

I remember when it was the day of her weekly visits to my place, I ensured that if I had my pain on that day I would take extra pain killers so that I am her “normal daughter”.. super active and healthy! There were times she would sense my lethargy but I would camouflage it by watching a serial with her and siting put…so she does not see me in pain.

Yes this went on for some months but I guess, the truth had to be told and after a few months Mum was made aware that I have RA…not really that she understood the intensity of the disease and her first reaction was no one in the family has Arthritis how come you? One of the main reasons was because she thought Rheumatoid Arthritis is thought to be an ‘old person’s disease’ and usually asked questions or comments like ‘but you look so healthy’ or ‘you are so young, you couldn’t possible have it’.

I continued going to office only to find out one fine day that she opted to come to my house and do the basic cooking and tidying my place and gone back to her home. This continued daily and it went for months, she only stopped the daily visits once she saw me much better after the medications set their results in me. That’s the unflinching support she surrounded me with in my difficult days! And all this was without much ado…it was her sheer unflinching support that took me through this journey! She continuously introduced me to naturopathy and other modalities of home-made medications, as she felt the side effects would be less as any mother would experience. Thank you mama..

Yes, I do remember there were days when I had to try to hide the full symptoms and problems it was causing and ‘put on an act’ until Mom got out my own front door.  It hurt but I felt good that my mum is not disturbed. This went on for years and it was funny but when she experienced a little bit of body pain she used to just blurt out and say….Hey just pass me your Voltaren !!!

As years passed and she spent some time with me did she realize what impact the disease was having on me. But I will always appreciate the encouragement and support from Mom that helped me get over my own shock at the diagnosis. Her weekly visits were full of activity like shopping my groceries, cutting and chopping my veggies for the week, doing the laundry and lots of other chores. She was a super active person.

She would always say celebrate the strength of this illness what it has given you and shaped you into today. Don’t focus on what you can’t do, but what you can.

She was one of my unsung hero in my RA journey  ..Mom was a part of my Patient Advocacy entourage…she always attended my Arthritis Awareness Sessions , Walk for Arthritis , World Arthritis Day and so on… Thank you Mom for being there for me in all phases of my life…

I pray that all Arthritic Warriors are blessed to have a Mom like you ..will miss you Mom

C.S. Lewis said it well. A loved one’s “absence is like the sky, spread over everything.”

DEALING WITH ARTHRITIS IN THE KITCHEN  – GO GET A GRIP…

I have been talking about food for Arthritis a lot … today I will talk about the actual Arthritic Kitchen environment.

We need to invest our time in making our kitchen arthritis friendly as certain tools can make tackling kitchen chores less daunting. Pressure and strain can exacerbate the discomfort associated with arthritis. To avoid such painful encounters, we Arthritic Warriors may want our kitchen to be appealing, but it’s important that it’s functional and arthritis friendly too.

Working in the kitchen can be cumbersome if you have arthritis, adding stress to already burdened joints during flare ups.

The use of well-designed kitchen gadgets and tools can make many kitchen tasks easier and reduce the strain, especially for people like us with limited range of motion or problems with manual dexterity.

Kitchen gadgets and tools that are lightweight, easy to grip and hold, with non-slip handles or undersides are great additions to our kitchen.

I always look for ergonomically designed utensils. These utensils feel more natural to grasp and are easy to hold and use

We need to look into the cooking, eating, cleaning, cutting, opening and dining with utensils designed specifically for our needs.

I have seen some electric kitchen items are extremely helpful as they can power us through difficult cooking tasks.

No one wants to concede, especially those recipes they grew up with. Food is comfort👍 . The smell of a curry or a roast, or something that has been simmering all day in our houses during our good pain free days with the right spices … we want that to be continued …Hence we need to ensure we have a user friendly arthritic kitchen environment.

One thing I am confident of is that we don’t know how to make medication, but we can make food. Hence, I have always striven to make my home and kitchen a comfortable foodie zone, as I do not allow arthritis to slow me down and keep me from the things I love like cooking!

RA Positive Hub Kitchen tips:🍳

  • Arrange cupboards and cabinets so that the items are easier to reach
  • Heights of the cabinets should be well noted
  • Use wheel bound drawers as they are easy to slide in and out
  • Use joint protection techniques whist lifting heavy utensils
  • Use adjusted movement patterns whilst working with kitchen equipment’s
  • Design the work space in the kitchen for free accessibility
  • Selection of handy assistive devices that should help in making life easier
  • Equip it with seating arrangements during breaks.
  • Use small size utensils and gadgets
  • Hang the pots and pans you use most often from wall hooks or from a rack that hangs down from the ceiling . This way, you won’t have to bend to reach them.
  • Work station layout in sync with other kitchen equipment’s
  • Taps and drawers and cupboard handles should be arthritic user friendly.
  • Standing on a good rubber mat can lessen pressure and strain on feet and knees.

There are lots of adaptive kitchen tools available, which can ease your pain and get you back to enjoying preparing and eating homemade meals. The important thing is to enjoy it, cooking should be something you take pleasure from and not something you push yourself to do if you’re not feeling well. It’s meant to be enjoyable not frustrating. The most important thing is you’re getting something out of it. It’s improving your day without arthritis ruining it. A clean and safe household and kitchen can play an important role in speedier recovery as well.

Cheers on our road to wellness!

 

 

THE FOOD & ARTHRITIS CONNECTION!

A familiar question we mostly ask……Does what I eat have an effect on my rheumatoid arthritis?

Answer: You’re right: What you eat may have some effect on your Arthritis. Some foods—as part of the anti-inflammatory diet—may have an anti-inflammatory effect, which means that they may reduce inflammation levels in your body.

Good news: Over the years research suggests that switching up the kinds of food you eat may help you manage arthritis symptoms. Researchers continue to look at the role diet plays in arthritis. While evidence is accumulating, anyone with arthritis can benefit from a diet that provides adequate macro nutrients and micro-nutrients to prevent deficiencies.

A good rule of thumb: Maximize nutrients and minimize extra calories by choosing nutrient-rich foods like whole grains, fruits, vegetables, lean protein and lower-fat dairy products.

You will probably find that everyone wants to give you advice on what to eat and what not to eat. Remember that everyone reacts differently to specific foods and that you have to work out for yourself what suits you best. Every individual body composition is different.

Most of us Arthritic Warriors have a common problem that is carrying excess weight. Certain drugs, such as steroids, can lead to weight gain, and others, such as non-steroidal anti-inflammatories (NSAIDs), can lead to stomach problems, making dietary choices harder. Some people may find that being unable to exercise or prepare fresh food means that they put on weight easily. Others get trapped in a similar cycle during a flare-up, but one in which they are too tired to eat and consequently lose weight, becoming even more exhausted. So, eating a balanced diet is key to maintaining a healthy weight and managing arthritis.

RA Warriors often inquire about dietary interventions to improve RA symptoms, as they perceive rapid changes in their symptoms after consumption of certain foods. There is evidence that some ingredients have pro- or anti-inflammatory effects. In addition, recent literature has shown a link between diet and microbiome changes. Both diet and the gut microbiome are linked to circulating metabolites that may modulate inflammation.

My story …my food journey;

Food is medicine.  You are what you eat! We have all heard it before, but what does it mean? You can’t really expect to treat chronic conditions like arthritis with food but you can, however, make food choices that help fight inflammation, the main characteristic of arthritis. I strongly believe that the right foods also help boost our immune system and strengthen our bones to alleviate the painful symptoms of this chronic disease.

Finding my triggers gave me some sort of control on my flare ups and some power to take my health into my own hands. That’s only possible because I took the time to listen to my body and optimize my environment for it. it’s a way I use to decode the triggers in my environment that influence how I feel.

I have come to the conclusion that when it comes to inflammation and autoimmune issues, you really need to understand your own body and you can’t just follow a one size fits all diet. As mentioned earlier in my posts I have mentioned I had undergone various food intolerance tests and other modalities and now rigidly avoid the foods which trigger my flareups.

I try to eat a well-balanced diet to get all the vitamins, minerals, antioxidants and other nutrients that my body needs..Also..

  • Include a variety of fruit and vegetables, protein foods, dairy, nuts, pulses, cereals and grains. This helps me to maintain relatively general good health and a healthy weight
  • Include plenty of omega-3 fatty acids in my diet, such as oily fish, walnuts or foods that are fortified with omega-3s (for example, organic eggs or home made ghee)
  • Drink plenty of infused herbal decoctions through the day
  • Keep a food diary – if I think a particular food may aggravate my condition, I note it downand it helps me to keep a diary of my food intake and symptoms. After a month, I have some idea about which food could be provoking symptoms.

We need to be aware – the symptoms of arthritis, particularly the inflammatory types, can change for no apparent reason. Don’t assume any improvement in your symptoms is due to what you eat or changes in your diet. Be guided by your health professional too. There has to be a balance of both.

Finally my gut feel is that supporting disease management through food and diet does not pose any harmful side effects and is relatively cheap and easy, but always seek advice – if you need help, talk with your doctor or a dietitian. There’s a lot of conflicting information online and in the media about arthritis and diet. If you need some guidance, talk with a professional..don’t just sit on it …work on it!

Wait for my next post  —- Arthritis Kitchen!

Eat healthy …stay safe!

 

 

 

 

 

 

 

 

 

 

MANAGE YOUR MOBILITY INDULGE IN POSITIVE MOVEMENTS- MOVE YOUR BODY

 

I am always talking of positivism and my website also is named as RA Positive Hub!

I totally believe yes Positive Mindset but also a more powerful concept alongside is Positive Movements.

Arthritic Warriors experience lack of bodily movements due to chronic pain. Giving in to arthritis pain only make things worse.

Aches and pains of arthritis can slow you down and make you think that moving around is a bad idea. But regular exercise is actually one of the best medicines for arthritis.

Yes, we do get our flare up and so on but we need to win over our thoughts of not pushing ourselves as we will feel pain restricts movement and it will be more painful. Getting started is tough for people with arthritis, no doubt about it, but once you become consistent, exercise is self-reinforcing, because it gets easier, you lose weight, you gain strength, you experience less pain, and you feel better emotionally and the ultimate… you experience your freedom of movement!

I agree, pain is a pain…but I always try and get out of my comfort zone and try and maneuver myself slowly and listen to my body…and behold I experience a lot of freedom and control on myself. This according to me is my priceless personal growth …I am in a situation where I am just not managing my pain but driving myself through the tough times.

I strongly believe Arthritis can not own you or restrict you, you need to overcome with sheer determination and perseverance. Lot of effort goes into getting oneself into this driving mode but let me tell you its worth all the effort and patience as eventually its you who is the winner!

I have observed over the years that yes, I cannot micromanage every small sensation or feeling but I can drive it on a larger scale. Getting out of my comfort zone and pushing myself positively to make small movements independently in a radius I can manage and handle. Slow baby steps towards this freedom of movement is the ultimate joy we as Arthritic Warriors can experience…

No matter what mediums you use or how careful you are, however, occasional setbacks remain likely, don’t push through pain, but don’t stop, either, learn how to balance gentle exercise with rest; there’s value to taking breaks and learning where your limits are regarding pain.

So, lets push our overall mindset limitations joyfully!

Fatigue ..is just one of the symptoms ..it does not define you! So work on it…

Does this sound familiar?  You are all set to go to work but somehow feel too exhausted to even move an inch, or just slept without eating as no energy to even make some brunch!

Yes…this is fatigue which has not been easy to measure and conceptualize for Arthritic Warriors as the consequences permeate every sphere of life.  Fatigue is different than normal feelings of tiredness. People describe it as being overwhelming and uncontrollable. They feel worn out and drained of energy, and sometimes even lose all interest in anything.

Reasons I have been told by various doctors could be due to inflammation/swollen tender joints, pain, depression, anxiety, anemia, thyroid problems (hypothyroid conditions), infections, certain medications, sleep problems (lack of sleep due to insomnia), sleep apnea, work schedules or lifestyle, low levels of Vitamin D etc…overall all related to RA condition.

The unpredictability of RA-related fatigue is dominant, pervasive and is experienced as a vicious circle, which can be described in relation to its physical, cognitive, emotional and social impact. Over the years as mentioned earlier the spoon theory is an important tool I have been using to manage my fatigue.

I usually pace myself, avoid going overboard on my daily body limitations and listen to my body. There is a great deal that can be done to reduce fatigue and you may need to try different approaches before you find a combination that works for you. As the inflammation that causes the symptoms is brought under control and as you adapt to the disease, fatigue should become less of a problem. But it goes without saying serious hard work and dedication is required.

Fatigue is commonly reported by patients with rheumatoid arthritis (RA) but is rarely a treatment target. How do we help ourselves? If you think your drug treatment may be causing your fatigue, talk with your doctor about reviewing your treatment in case certain drugs are causing drowsiness. They can also look for signs of other conditions that may be causing fatigue and check your inflammation or anemia levels when you are doing your regular tests.

I’ve learnt over the years that I can do more as long as I have proper rest breaks. I can actually fit more into a day. Earlier I just went headlong into something and then hit a brick wall.

‘Now I have the confidence to turn and say, “No, that’s beyond what I’m prepared or able to do.”’ Reduce your physical reaction to stress through relaxation so that you feel more able to cope with things you find stressful. Take time for yourself – read a book or have a warm bath, for example.

In my earlier days when RA non-acceptance was at its peak… my RA put various social roles under undue pressure in general, both in the family, among friends and in the wider social network. I put a lot of emphasis on my work life as I felt it affected my identity, social relationships and the sense of normality in my daily life.  After I slowed down and took to patient advocacy role, I have seen women with RA give the highest priority to their professional identity and compromise their leisure time and family time where RA-related fatigue bears the greatest impact. Agree it all boils down to your current economic well being too, but personally out of experience I feel we need to introduce a good blend of both worlds.

The effects of the disease can also change how you see yourself, as well as your role in your relationship, family or at work. Mutual give-and-take is often an important part of friendships and family relations. But rheumatoid arthritis can make it harder to continue to care for others – and may also mean that you need more and more help yourself. Fatigue can affect relationships because it becomes more difficult to carry out plans you make together. Personally I go through such moments and its sometimes get difficult to time and  again explain your condition to people as it sounds like a stuck record! But nevertheless this attitude does not affect me as by now I have learnt to get adjusted to my surroundings and the responses!

We should avoid struggling to manage our fatigue with little professional support, or perceive it to be dismissed, or assume it cannot be treated and that we must manage alone. Being aware of  how fatigue presents in your life allows you to better plan and cope. Friends and family may want to be there for you too, but often don’t know what to ask.  I keep on mentioning that it’s okay to say, “This is a bad day, is there any way you could help with the dishes (cooking, cleaning, laundry, etc.)?..Go out and get help.

Cognitive behavioral therapy (CBT) strategies can also be learned to help cope with fatigue. Some involve recognizing and then changing certain thoughts, beliefs and behaviors that make it more difficult to live with the disease.

Lastly, be gentle to yourself.  As mentioned earlier…Fatigue is just one of the symptoms, it doesn’t define you. There is  a lot more to you then this fatigue syndrome…so go all out and try and work on it…and yes.. you can if you want to!

Stay Safe ..Stay Agile!