I Live With Lupus

 

May 10th is World Lupus Day.

Lupus (Systemic Lupus Erythematosus) is an inflammatory chronic autoimmune disorder that affects more than 200,000 Kenyans and more than 5 million people worldwide. It is a painful, debilitating and disruptive disease in which your immune system begins to target and destroy healthy cells. The symptoms include fevers, headaches, joint pains, blood disorders, organ damage and organ failure.

One of the first things you will learn after diagnosis is that #Lupus has no cure but that it can be managed. It is a long term chronic autoimmune disease. This knowledge can be very daunting. Add in the unpredictability of the Lupus journey and one can be left confused and lost.

How can you cope?

  • Take one day at a time.
  • Learn as much as possible about Lupus, your medication, how to maintain optimal nutrition and keep up a level of fitness despite illness.
  • Learn how to control stress, reduce anxiety and get help when you feel that your mental health is strained. Talk to a close friend who understands, a counsellor, pastor or doctor.
  • Rest when your body demands rest. Pushing yourself too hard can only result in burnout and a possible flare.
  • Take advantage of the times when Lupus is not active to form meaningful friendships and relationships, work towards your goals.
  • Be aware that a flare can be triggered at any time and have an action plan for when that happens.
  • Keep learning about Lupus, breakthroughs in research, and ask your rheumatologist if there is any way for you to benefit from research studies.

 

What about diet?

World Lupus Day blog post Rekindle Kenya

 

One of the first questions newly diagnosed Lupies will ask me is, ‘So is there a specific Lupus Diet I should be eating?’

My answer. Eat a balanced diet. Drink enough water. Do not overdo sugar, salt and fat and avoid processed foods.

When you go online, you will, of course, find conversations that talk about foods that COULD make a person with autoimmune disease flare or get inflamed. You’ll see pointers towards nightshade plants – potatoes, tomatoes, peppers, eggplants etc - foods that contain gluten – wheat, barley, rye, therefore breads, pastas etc - dairy products, alfafa and supplements that are meant to raise your immune system. So should you avoid these foods? Probably. How will you know what to avoid?

The first thing that will help you make your decision on what to exclude from your diet is a basic understanding of what autoimmune disease is.

Your diet should ideally not encourage your rogue immune system to grow and it should provide you with needed nutritional support. In this particular case it would be wise to avoid dietary supplements and herbs that activate the immune system.

Your diet should also not increase the inflammation in your body. If you notice for example that you have constant gastrointestinal issues eliminating dairy products might help. If efforts to reduce joint pains are nought, you might consider examining your consumption of nightshade plants as these might have a hand in the situation.

Your diet should also consider the medical regimens you are receiving to control your autoimmune condition. If you are like me undergoing long-term Lupus Chemo with Methotrexate, Cyclophosphamide, Azathioprine or Mycophelonate you may need to have tests every few months to check your general blood condition, liver health, kidney health as well as essential vitamins and minerals. Some drugs deplete Vitamin B12, Folic Acid and make it harder for you to absorb Vitamin D and Calcium.

In the event your levels are too low, you might need supplementation to avoid complications. The doctor will often tell you how much you need to remain healthy. With this as a guideline you can look around at supplementation and /or health food options.

World Lupus Day - Rekindle Kenya

I’ve been on the hunt for palatable Turmeric since my doctor mentioned it might help with my runaway inflammation. I tried making turmeric tea with the fresh turmeric from the market. I couldn’t handle it and as my gag reflex is pretty active I just gave up on that. I’ve had to give up on many healthy food options because of the nausea and upheaval my stomach experiences. So I have been looking around for a little help.

A few days ago, a friend wrote to me and mentioned a turmeric spray from the Rekindle Health Store, and I was curious. Wouldn’t you be? They've got a few other options that I’ve found interesting including supplementation for the vitamins and acids I mentioned above. Details in Related Products below.

And...I thought it would be awesome for all my Lupies to have a conversation with Rekindle, so I invited them to the May 27 She Blossoms Lupus Awareness Concert at the August 7 Memorial Park from 3pm. Come see! 

In the end, however, you will have to tinker around until you figure out what is right for you. You will definitely not want to go with popular fads, you can’t afford to be cool. Sometimes you might have to resort to unconventional ways of eating and supplementation and if you do, there should be no shame. Do the best to take care of you.

Most importantly, READ. Read up on basic nutrition, then read on nutrition for immuno-compromised bodies. Talk to fellow Lupies. Find out what the options are, combine that with what you know and work at figuring it out.

Living with Lupus can be hard but it is not impossible.

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Juliet Maruru is a writer, editor and Lupus Awareness Advocate. http://jmaruru.wordpress.com | http://facebook.com/sheblossomske

Related Products:

World Lupus Day - Turmeric spray Rekindle Kenya
Turmeric Oral Spray
Click here for more information

Better You Boost B12 spray - Rekindle Kenya

Vitamin B12 1200ug Oral Spray
Click here for more information

Quest Folic Acid - Rekindle Kenya

Folic Acid 400mcg 90s
Click here for more information

     

Once-a-Day  Sunshine D 1000iu 30's
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Better You Vitamin D 1000iu Oral Spray - Rekindle Kenya

Vitamin D 1000iu Oral Spray 
Click here for more information

Quest Calcium plus Vitamin D - Rekindle Kenya

Calcium plus Vitamin D 
Click here for more information

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