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Lupus: a BRIEF brush-up!

What is lupus? If you’re recently diagnosed-or if you’re a veteran in seek of a brush-up on the basics, this is for you. Lupus i chronic: it doesn’t go away. What does that mean? It means that lupus will be in your body forever (until a cure is found). Lupus may be dormant for a while, but other diseases are likely present in our bodies and we don’t know it; like Sjogren’s Syndrome or Rheumatoid Arthritis. Often, these diseases are only too happy to step in take up where lupus left off! Now, you may be stuck with them, too!

Lupus is inflammatory and if there’s ONE thing you remember about lupus, it is that. Inflammatory, inflammatory, inflammatory. Whenever you may think of lupus or any autoimmune disease, they all have one thing in common: Inflammation. Inflammation of the sac around the heart:pericarditis. Infammation of the sac around the lungs: pleuritis.  Inflammation of the stomach: gastrits. Inflammation of a cyst: cystitis.

How does that happen? Normally, our bodies have certain cells which recognize other cells as foreign. They ‘re job is to mount a defense, kill these cells and get rid of them. In lupus, these cells are either fewer or unable to do their job or are overwhelmed and overtaken by the foreign cells (sounds like a battle to me.) Sometimes  we talk it is it seems that we’re on a battlefield of  full scale war! Is it any wonder that the medications used to treat autoimmune diseases are often anti-inflammatories?

The next post will concentrate on listing resources you may want to familiarize yourself with. Remember, that, in an earlier post I mentioned that not every site is accurate, These sites have tried and true information; the only thing missing, is the how personable, or technically competent of your doctor who knows YOU and knows YOUR history. That is why it is always the best combination approach to get information from these sites and CLARIFICATION as to whether is applies in your case FROM YOUR DOCTOR.

So, where is all this inflammation coming from? This is an explanation that I found from YouTube that explains it all.

 

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Interview with Dr. Donald Thomas-lupus and Sjogren’s Syndrome

Comprehensive, yet easily understandable, this interview with Dr. Donald Thomas, M.D. discusses 27 secrets to living a better life with lupus and other and other autoimmune diseases. His book, “The Lupus Encyclopedia” needs to be in the library of every lupus patient.

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Flares and their Triggers

First, this is a recap of previously agreed upon flare triggers:

Do you notice a trend; I do! I see that anything that places a stress on your system and requires that your body physically or emotionally adjust to a new set of circumstances has the potential to cause a flare of your symptoms.

So, how can each of the above triggers, throw you into a flare of your symptoms?  All of them put a physical or emotional stress on your system, but there are additional ways worth mentioning

  • not enough rest: Sleep deprivation is harmful to the immune system HOW? T cells are decreased when we get too little rest and when T cells are decreased or are decreasing, the body has a harder time fighting infection.
  • pregnancy places a stress on the body and if women become pregnant 6-8 months after symptoms become quiescent, they’re are less likely to develop a lupus flare during pregnancy. This means they need to plan pregnancies
  • when lupus patients have infections, they are likely to be started on medications. If you remember, STARTING a medication is an adjustment the body needs to make and rapidly starting a medication can trigger a flare
  • when people are overworked, they get too little sleep which can worsen their symptoms
  • emotional stress often causes us not to be able to sleep, to lie awake thrashing. When we don’t get enough sleep, T cells of the immune system have a harder time fighting infection.
  • ultraviolet light can trigger a flare Normally, an intact immune system rids us of aging or dying skin cells. Because sunburn can cause cell death and enough sunburn can cause enough inflammation so that more than ‘a simple’ sunburn results. UV rays can cause enough inflammation so that not just the skin, but the joints, muscles and internal organs are affected. FLARE
  • surgery: is a physical stress on the system and an emotional stress on the body, both of which trigger flares. Also, surgery can introduce medications (like antibiotics or anesthetics) not taken before, which can trigger a lupus flare. A cortisone injection (intravenous or intramuscular) is sometimes given.
  • viruses cause trigger lupus flares because they are a kind of infection and exposure to any infection causes the immune system to work ‘overtime.’

Wouldn’t it be great to be able to prevent flares, but knowing what can cause flares and how flares are triggered, gives some ideas as to how they can be managed. We’ll address that in another post.

 

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Isn’t this beautiful? Mt. Ranier

  •                                                        English: Author- Jordan Goss Mt. Rainier as ob...

I’ve been mesmerized by beautiful images lately, some of which I see on Pinterest boards, so I started my own ‘bucket list‘ board of places I’d like to visit. This is one of MANY images of Mt. Ranier in Washington state stands over @14,400 feet and is the tallest peak in Washington State.

On this page, you’ll find sights that will take you (hopefully!) away from something we can never take a full holiday from, but maybe for a few short minutes there can be relaxation and we’ve talked about the benefits of relaxation on your immune system-before. Lupus may be a disease of exacerbations and remissions, but the exacerbations are real. Things like this inspiration column will help if you take ‘holidays’ from your daily routine on a regular basis.

Perhaps you’d like to ‘Google’ Mt, Ranier, get lost in the history or read an article or two about hiking in the area or learn about volcanos like Mr. Ranier. Whatever you’d like to do and see, Mt. Ranier lends itself to awe-inspiring study!

 

 

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“Live Beyond Lupus: 5 Steps to HappYness”

Cindy, nationally known motivational speaker, knowns of what she speaks. She  has lupus, speaks and teaches about living with lupus and gives tips on coping with autoimmune diseases. Her free webinar scheduled for April 1 was cancelled and needed to be rescheduled because of fatigue and fever which rarely gets Cindy down. But a 103 degree temp for 3 days stopped even Cindy. I’m happy to say that she’s ‘on the mend’ and has rescheduled her free webinar for next week. Please see the video and link below it for details! Only 57 spots left!

“Live Beyond Lupus: 5 Steps to HappYness

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MAY IS LUPUS AWARENESS MONTH

May is Lupus Awareess Month

 

MAY is LUPUS AWARENESS ACTION MONTH. Walk in one of the many walk-a-thons, or 5K walks or 5K runs, but BECOME INVOLVED. If you walk or run you are involved; or if you donate to the Alliance for Lupus Research, the Lupus Foundation of America, the Lupus Research Institue you’re involved. If you volunteer at your local Lupus Foundation chapter you are involved. It doesn’t take much to put your special talents to good use and make a difference in a very worthy cause.

Don’t let lupus become a forgotten ‘orphan disease’ An orphan disease is one that you can’t see so it so it seems to many that it doesn’t exist; it is often how the ‘story’ goes. An orphan disease needs a standard bearer, someone who can bring it to national attention.

According to the National Institute for Health (NIH). lupus or other autoimmune disease affects some 23 1/2 MILLION Americans: cancer affects 9 million Americans and heart disease affects @ 22 million people, but even though autoimmune diseases affect more people than cancer and heart disease, FUNDING for autoimmune decease lags far behind.

Also, according to the NIH, “NIH research funding for AD [autoimmune diseases] in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).” 

 

 

 

 

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Coping with Lupus

Amber Rosh is a Passionate blogger, lives in the UK. She writes on behalf of ehic-uk.org”. She loves to write as a guest blogger with interest in Travel, Health and Automotive. She is this week’s guest blogger, so please welcome Amber’s contribution:

Lupus is one of the most poorly understood diseases; poorly understood by the general public, and even by many who have lupus. Oftentimes the word ‘lupus’ causes bewilderment by whoever hears the word.

WHAT IS LUPUS?: The disease is an autoimmune disorder that basically means that the body’s immune system attacks it’s own healthy tissues and causes problems (depending on the body part and body system that is attacked). Lupus is extremely difficult to diagnose and deal with because its cause is still unclear. One misconception about lupus is that it only occurs in women. While it is more common in women, males too develop lupus, especially later in life.

MANAGING LUPUS: Lupus can be very painful at times; then at other times it seems not to be present at all. It is a disease of remissions and exacerbations. These times of increased discomfort (exacerbations) are often referred to as flares. Flares can be very intensely uncomfortable to patients and it is important to show understanding and support to family and friends during this time.

Flares may come at completely unpredictable times, and they ‘stay’ for unpredictable times. However, it is believed that there is a trigger for these flares. Knowing what your triggers are and learning to manage them forms a major part of improving the quality of life of any lupus patient. 

As you experiencer a number of flares, you will begin to notice certain symptoms that appear before a flare. Different patients have different symptoms so what causes your symptoms to ‘flare’ may not be the cause of someone else’s ‘symptom’ flare.

Some flare symptoms may include dizziness, nausea, vomiting, chills and fever and even fits of coughing. Getting regular blood work can also help the doctor to identify certain hints about prospective flares. The disease is not infectious or cancerous.

REGULAR MEDICAL CHECK UPS: Regular medical checkups are is one of the most important things that a lupus patient can do to help manage his or her disease. You may also need to see a rheumatologist frequently to seek help in managing the pain associated with lupus. The immune system of the body is affected in this disease and so it is important to get good preventative care; This puts you at less risk of falling ill, such as getting the flu. Often immune-compromised patients, such as lupus patients, are encouraged to get flu shots yearly. Talk to your doctor first!

STRESS MANAGEMENT: Stress is one of the factors that is consistently associated with a malfunctioning immune system. Try meditation, yoga and relaxation exercises (such as visual imagery) as valuable additions to help manage the stress in your life. Stress is a common trigger of all autoimmune flares. As well as helping you deal with the stress of knowing that you have a chronic disease, I can’t emphasize enough the importance of regular stress management (techniques or classes). They help control the symptoms of lupus. Make exercise part of your routine, as much as aches make you not want to get up and exercise!  And most important, get ample sleep along with good nutrition. These are all things that will help you feel stronger by making you more relaxed.

Your life expectancy is likely to be the same as anyone else even after having been diagnosed with lupus, so it is important that you make sure your quality of life does not suffer. Take up a hobby that which will help you take your mind of things and immerse yourself in things that make you happy. There are no restrictions on eating or travelling too, just be sure to have your European Health Insurance Card with you so that you can get access to medical care (when you travel) at heavily discounted costs all over the European Union and a few other countries in the continent. So, travel needn’t be limited, either.

A diagnosis of Lupus does not have to change your outlook on life or limit it in anyway.

 

 

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