World Lupus Day

world_lupus_day

For those of you that may not know, this topic is near and dear to my heart. I’ve been diagnosed with lupus myself, as well as some of the other autoimmune diseases. It’s important to identify and treat these diseases as soon as possible in order to prevent damage to your body. In most cases, people spend years and see several different doctors trying to find an answer to explain what’s wrong with them. Please make yourself a priority. Don’t give up. Keep looking and fighting for yourself. It’s important.

World Lupus Day

Today has been designated as World Lupus Day. It’s important that this autoimmune disease be recognized and discussed.  It’s important to recognize the symptoms and to fight for a diagnosis. The longer you’re undiagnosed, the more damage can occur to your body.

What is lupus? It’s a chronic autoimmune disease that can damage any part of your body. Something goes wrong with your immune system and, instead of fighting off viruses, germs, and bacteria (like it’s supposed to do); it fights and destroys your healthy tissue. This causes inflammation, pain, and damage to various parts of your body.

The Lupus Foundation of America estimates that there are currently 1.5 million Americans that have some form of lupus. While this is a widespread disease, awareness of it is way behind many other diseases.

A recent UCLA study found that lupus is among the leading causes of death in young women between 5 and 64 years of age. Often, children and teens are among those most likely to suffer the more severe and life-threatening consequences of the disease.

Currently, only 73% of Americans between 18 and 34 are aware of lupus and most know little about it. This is upsetting because this is the age group that is at the greatest risk of developing lupus. It affects mostly women of child-bearing age.

It’s sometimes difficult to diagnose lupus as it is often called “the great imitator” due to confusion of symptoms with many other things including fibromyalgia, diabetes, rheumatoid arthritis, thyroid disease, Lyme disease, and many more. It is important to be diagnosed as it affects many different parts of your body and can cause significant damage. Lupus can range from mild to life-threatening.

Symptoms may be vague. Symptoms may come and go and new symptoms can pop up and disappear at various times, sometimes even in the same day! Some of the more common symptoms include (but are definitely not limited to):

  • Extreme fatigue (worse than being tired)
  • Headaches (from mild to severe)
  • Painful and/or swollen joints
  • Anemia
  • Swelling (edema) in feet, legs, hands, and/or eyes
  • Sun and/or light sensitivity (photosensitivity)
  • Pain in the chest on deep breathing
  • Fevers
  • Hair loss
  • Rashes
  • Abnormal blood clotting
  • Mouth and/or nasal sores

Some more serious consequences can be attributed to lupus both directly and indirectly (through permanent damage due to inflammation, treatment drugs, etc.). Some of these can include things such as infection, heart attacks, strokes, kidney failure, osteoporosis, and fibromyalgia.  Infections, cardiac conditions, and lupus itself are the 3 top causes of death in lupus patients. It is imperative to identify, monitor, and treat all conditions with a diagnosis of lupus.

Rarely does lupus come alone. Once diagnosed with this autoimmune disease, you are far more likely to develop one or more others. Some of these may include inflammatory arthritis, connective tissue disease, scleroderma, Sjogren’s syndrome, vaculitis, Rheumatoid arthritis, eye problems such as uveitis, Raynaud’s, peripheral neuropathy, and blood count issues. These are just some of the others to look for. This is something to be aware of and follow up with your physician to ensure diagnosis and treatment for each condition.

Please take time and learn a bit more about Lupus. It’s important to learn the facts and to bring any unexplained symptoms to your doctor’s attention.

 

 

 

 

I’m Lying Every Day

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lying

Because I have a chronic illness, I’m forced to lie every single day.  When you see people at work or at the grocery store or when you see a neighbor out front, our standard greeting nowadays is usually some form of “how are you?”.  It’s at this point that I’m forced to lie, for everybody’s benefit.  For the person asking, they certainly don’t want to hear how I’m actually doing.  How am I supposed to convey the enormity of how this illness affects me every single day of my life?  How could I explain the very real impact of how I feel physically, mentally, and emotionally?  How should I explain my life to them when, nice as they are to ask, they really don’t care at all; they simply asked me to be nice, as a social greeting.  For my own benefit, I’d like to continue to see that person and say “Hi, how are you” and make small talk after today, so I will continue to lie and say “Fine, how are you?”.  How many of us do this every day without really asking how the person is? Continue reading “I’m Lying Every Day”

Lupus Awareness Month

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lupus awareness

I’d like to talk about something close to my heart this month.  As some of my readers are aware, I live with a few autoimmune diseases, as do many other people.  Most of these diseases are not easily diagnosed and they are not well-known to the majority of people.   I think most of us have heard the name lupus, but don’t know too much more than that.  This is one reason that it is so critically underfunded.  We need to raise awareness of the symptoms so that more people are diagnosed earlier and are able to seek medical help.  I’d like to have more of us become aware of the impact that lupus and other autoimmune diseases can have on our friends, our family, and our co-workers and how you can help to support them.  This is why I’d like to devote some of my posts this month to the issue.  You will find these (and previously posted) articles under the category of “Chronic Illness”.

There is no cure for lupus.  Many of the medications that are being used to treat the symptoms create significant problems in their own right.  We need awareness and support to find a cure and better treatment options.

By posting a few informational articles, I’m hoping to increase awareness, to inspire support, and to raise interest in the subject.  I am fully aware that this is just one of many causes that we’re all provided information on and we certainly can’t support everything.  In addition to lupus and others, I always support the Juvenile Diabetes Research Foundation and the American Heart Association for personal reasons.  It is my hope that you will learn more about lupus and autoimmune disease in order to provide support as well as to help increase awareness.

Thank you for your understanding.

If you read any of the literature and would like to send me a personal question or comment, please contact me from the site (top right corner/contact me) or email me directly at debsordinarylife@gmail.com.

I always love hearing from you and appreciate the comments that you post!

Selena Gomez is Not Alone in Fighting Lupus!

caring
caring

In the news today it was announced that Selena Gomez is taking some time off to care for herself in dealing with the effects of lupus.  Good for her!  She is not alone in fighting this disease and is, in fact, one of a growing number of us affected by an autoimmune disorder.  Yes, I said “us” as I am counted in that number and can speak to the fight that she is going through.  I am happy that she is speaking out and doing what she needs to do for herself.  We all need to do that, although it’s not easy and it’s not always even possible.

Facts & Figures:  Autoimmune diseases are one of the fastest growing categories of disease.  To put this in perspective and recognize the widespread impact it has, cancer affects up to 9 million people and heart disease up to 22 million.  According to estimates (below), 50 million people may be affected by an autoimmune disease.  Despite the vast number of people affected, funding for research into this area of health is woefully inadequate, as are treatment options.  It is estimated, and expected then, that direct healthcare costs are double those of cancer.  Continue reading “Selena Gomez is Not Alone in Fighting Lupus!”