Let’s Talk About Chronic Illness


Chronic illness affects millions of people. It is not “all in their head”. It’s very real and it really sucks……Let me guide you into a better understanding of it, and help you be a better friend or family member to someone who has a chronic illness.

Let’s talk about Chronic Illness and how you can help

How many people have you met that are always sick? Friends who are just “too tired” to kick it with you? Someone who is at the doctor several times a month or the ER? And how many times have you rolled your eyes at them or about them, when they have frequent doctor visits? Well, listen, read this and share it, cause I know many people need to be educated. Not on a book level either, but reality level. Let’s go.

There are many chronic illness, auto immune diseases. To name a few would be Lupus (SLE), Multiple Sclerosis (MS), Type 1 Diabetes, Guillain-Barre syndrome, Chron’s Disease. I bet you know of at least 1 person who has one of these conditions.

To have a chronic illness is to take away a real quality of life. For example, let’s talk about Lupus. Lupus is like your body is allergic to itself. A bad germ comes in and your body attacks it and kills it and you feel better again, right? Well, with Lupus, the body keeps attacking cells even after the bad ones are gone, so it’s killing off good cells too. This causes so many different problems. No two people have the exact same issues with Lupus. It can attack anything, any organ! Sometimes you see people with a rash across their cheeks and nose, it’s called a butterfly rash. Now, only about 30% of patients with Lupus actually get that rash. So, it’s not defining for everyone with Lupus. Lupus causes great fatigue, severe joint and muscle pain, skin issues (too many to list) and organ failure.

When your friend or family member who has this says they don’t want to go out with you or do things you want to, show some compassion. Say okay, ask them if there is anything you can do for them. Maybe they would like help making dinner, help them. It’s hard to do simple tasks that someone who isn’t chronically ill, can do. Don’t get upset with them cause they don’t feel well. All you are doing is adding to their stress level and causing the flare to take longer to get over.

Things you can do to help your friend or family member who has a chronic illness.

* Help them prepare meals for the week

* Ask if you can run any errands for them (they are not always able to leave the house)

* Help them clean house once a week

* Don’t offer advice on how to “cure” their incurable condition. I promise, it’s all been heard before. Just don’t.

* Let them vent about their pain and frustration with their condition. Don’t offer advice, just listen. Really listen.

* Do a little research on their condition, so that you understand more about what they are going through

* Lastly, don’t say “but you don’t look sick”. Most people don’t “look” sick. Is there a standard to looking like you have a disease? The inside of the body is usually what’s being destroyed, and a person has to be extremely flared up to look like society’s perception of what sick is suppose to look like. That’s why they are called “invisible illnesses”.

I hope you learned a little bit today, and thanks for reading the post. Please learn about auto immune diseases and spread the word. 💜💜

TAME THE WOLF AND TAKE CONTROL

 “TAME THE WOLF AND TAKE CONTROL’
The word ‘lupus’ originated from the Latin word ‘wolf’. It’s attributed to a 19th century physician who used it to describe rashes or scarred irritations on the skin of his patients that looked like the bite of a wolf.

The wolf is considered as a ferocious animal which ravages just like lupus does. 

Lupus is life – threatening, unpredictable and can damage organs in the body.

Living with lupus is like living with a wolf in the inside. Do we allow the wolf (lupus) to ravage our bodies or find ways of taming it?

Taming the wolf involves taking measures to ensure we keep lupus under control.

Together we can make a difference by joining forces to educate lupus warriors and the public about Lupus.

Molly’s Fund Lupus Hair Loss and Alopecia Explained – Molly’s Fund

Getting diagnosed with lupus is scary and upsetting enough without the added stress of potential hair loss. The physical ramifications of what systemic lupus erythematosus (SLE) can do to the body internally are indeed very scary. But the emotional toll of looking in the mirror and seeing a dramatic change in our external appearance is just one more thing that can make living with lupus more difficult. So, can lupus cause hair loss? The simple answer is, unfortunately, yes. Because lupus causes widespread inflammation throughout the body, many times it can also involve your skin-which is the largest organ of the body. Inflammation of the skin can result in rashes or even hair loss occurring most often on the face and scalp. The medical term for hair loss is alopecia. It is usually described as hair noticeably thinning orHair loss problem with hairbrush falling out in clumps or in patches. Although a few people with lupus will lose clumps of hair, the disease can also cause gradual thinning of the hair on your scalp. It is also possible to notice loss of hair of the eyelashes, eyebrows, beard or body. There are two main types of alopecia: scarring and non-scarring. Scarring means that the hair follicles have been destroyed by inflammation (and thus there is no chance of hair re-growth). Discoid lupus is one major cause of scarring alopecia. However, if caught early enough (before scarring takes place), it is possible to see hair regrowth. Non-scarring means that the hair follicles are still present and hair regrowth is possible. Hair loss can be one of the first signs or symptoms of lupus. Approximately half of lupus patients will experience at least some form of lupus hair loss and alopecia. This often occurs at the beginning of the disease but can also appear along with certain medications and treatments that may be prescribed to manage more serious lupus symptoms. Back to top  

To read more please go to Lupus Hair Loss and Alopecia Explained

Dr. Alana Levine answers common questions about lupus – What are lupus flare ups? – YouTube


https://m.youtube.com/watch?feature=youtu.be&v=GdiNjQKHCNs
Published on May 22, 2017It’s Lupus Awareness Month and Dr. Alana Levine is here to answer common questions about lupus! In this segment, Dr. Levine discusses some typical lupus treatments.
Lupus Awareness Month

Learn more: http://lupusresearch.org
Lupus affects an estimated 1.5 Million Americans, and there is no cure. Please help the Lupus Research Alliance to raise awareness and funds for lupus research during Lupus Awareness Month in May and beyond.
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How Lupus Affects the Body

  In people with lupus, the immune system begins to recognize and attack the body’s own tissues. This phenomenon is similar to “friendly fire” and causes inflammation in various parts of the body. It is important to realize, however, that lupus can affect different people in different ways and that signs and symptoms can come and go, producing periods of flares and remission. The following articles provide an introduction to how lupus may affect different parts of the body.

  * Antiphospholipid Antibodies Antiphospholipis antibodies are antibodies directed against phosphorus-fat components of your cell membranes called phospholipids, certain blood proteins that bind with phospholipids, and the complexes formed when proteins and phospholipids bind. Approximately 50% of people with lupus possesses these antibodies, and over a twenty-year period of time, one half of lupus patients with one of these antibodies—the lupus anticoagulant—will experience a blood clot.
* Arthritis “Arthritis” is a broad term used to describe inflammation of the joints. There are many subsets of arthritis, but the arthritis seen in lupus closely resembles rheumatoid arthritis   
 * Cardiovascular System Lupus can affect the cardiovascular system, which includes your heart and blood vessels. In fact, cardiovascular disease, not lupus itself, is the number one cause of death in people with SLE. Therefore, it is very important that you take steps to maintain optimal cardiovascular health.* Immune System in lupus and other autoimmune diseases, the immune system begins to recognize and attack “self.” In other words, the cells of the immune system begin to injure the body’s own tissues. This phenomenon is similar to “friendly fire” and can cause permanent scarring that ultimately jeopardizes the function of certain organs and systems in the body. Certain cells and processes of the immune system have been identified as playing a role in lupus.   

 * Kidneys About one half of people with lupus experience kidney involvement, and the kidney has become the most extensively studied organ affected by lupus.* Lungs About 50% of people with SLE will experience lung involvement during the course of their disease. Five main lung problems occur in lupus: pleuritis, acute lupus pneumonitis, chronic (fibrotic) lupus pneumonitis, pulmonary hypertension, and “shrinking lung” syndrome.  

 

* Nervous System Lupus can affect both the central nervous system (the brain and spinal cord) and the peripheral nervous system. Lupus may attack the nervous system via antibodies that bind to nerve cells or the blood vessels that feed them, or by interrupting the blood flow to nerves. Conditions associated with or sometimes seen in lupus include cognitive dysfunction, fibromyalgia, headaches, organic brain syndrome, and CNS vasculitis.  

 

* Skin Most people with lupus experience some sort of skin involvement during the course of their disease. In fact, skin conditions comprise 4 of the 11 criteria used by the American College of Rheumatology for classifying lupus. There are three major types of skin disease specific to lupus and various other non-specific skin manifestautions associated with the disease.