Tag Archive | chronic illness

How Can I Learn to Accept My Lupus?

Once a patient learns he has lupus, possibly the next question that arises is how to make a living with lupus. A diagnosis of lupus stays with you for the rest of your life. That is the reason that figuring out how to live with lupus includes making a few changes-physical, emotional, otherworldly and possibly spiritual-inside your family, at work and inside your social circles. As a rule, these changes will change how you see yourself.

It is vital to understand the critical distinction between seeing yourself as a person who happens to have a chronic disease and seeing yourself as a person who is defined by being a chronically ill individual whose ‘lot in life’ is to be sick. I’m here to help you learn to see yourself as that individual who happens to have a chronic illness.

What do I need to do to continue working with lupus?

Whether you were newly diagnosed with lupus or are a long time lupus patient there are some vital points to remember that are critical for your overall well being. Besides, establishing a good relationship with your doctor and having a support from your family and understanding the basics of the disease very well. These are some important tips to towards a happier life with lupus.

  • Maintain a Positive Attitude

Having a positive outlook and forward thinking are perhaps the two biggest steps towards living as happily as possible with lupus.. Your attitude plays a key role in your symptoms because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance the quality of your life will ultimately lead you to cope up with the daily and ongoing challenges of living with lupus.

Sometimes maintaining that positive attitude is hard, very hard and seems to be impossible, but this is why it is important that you build into your life a support system; this system may include your church, friends and loved ones who understand what lupus is, if only marginally, and how lupus affects what you do and prevents your from doing the things that you used to love to do. They should also understand how not being able to do those things affects you. Equally as important is to understand that as of now, there is no known cure for lupus and that learning to live and cope with lupus and its challenges needs to be part of your lifestyle.

  • Maintain a Healthy Relationship With Your Doctor

Since Lupus is an ongoing, chronic disease you will be spending a great amount of time with your doctor over the years. Learn to make it quality time. It’s also very important to develop an honest relationship with your doctor and develop an ability to discuss each and every issue related to lupus. It is also very important to visit your doctor regularly and follow the medication regimen he or she prescribes; as well has have all the blood and lab tests he deems necessary, on regular basis.

  • Develop Strong Relationship With Employers, Coworkers and Family Members

A strong and reliable support network is important when dealing with lupus. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and that you can be counted on to ‘give more than your all’ on ‘good’ days.

A strong and reliable support network is important when dealing with lupus. Ssupport group and online networking with other lupus patients will help you to reach out and share the information and inspire each other. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and you will give more than your all on ‘good’ days. And also, support group and online networking with other lupus patients will help you to reach out and share the information and inspire each other.

  • Take An Active Role to Remain Healthy

Lupus patients need to take an active role to remain healthy throughout their life. One of the best approaches is to keep a diary of how your body feels. Paying close attention to your body, symptoms you may experience and documenting those symptoms is an important way to determine which medications work better for you and what trigger your symptoms.

  •  Include Exercise In Your Daily Routine

Exercising/working out is an essential part to make a happy living with Lupus. Talk to your doctor to the safest exercise options and include them in your daily routine, but some form of exercise is a must. See about including walking, yoga or Pilates are any kind of exercise, which improves your muscle strength and decreases stress.

  • Follow Precautions While You Are In The Sun

It’s best to develop the habit of applying sunscreen while you outside and reapply it for every 2-3 hours while you are in the sun. And also wear a wide brimmed hat to protect your face and neck. It has even been suggested that sunscreen should be worn indoors, too.

Obviously no one wants to have a chronic disease with no current cure. But today people who have lupus are living longer and can set attainable goals. But, ge kind to yourself and know that you are not alone and don’t set unattainable goals. Work closely with your doctors for a wellness plan and reach out to those who love you and stay motived and positive. And if in the case of any emergency please make sure to have an EHIC card with you for a medical treatment if you don’t live in the US.

~Ruby Andrew lives in Bristol, UK and is an avid reader and blogger. Since her early years she’s had a passion for writing. Her areas of interest are food, reviews (Book/Movie), Travel, Fashion, Lifestyle,Fitness and Wellness. She works as a guest blogger on her chosen areas of interest and currently writes on behalf of EHIC Card.




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But, my chronic illness isn’t lupus

Some people with lupus also have have a condition called anemia. Anemia is the condition that results when there aren’t enough red blood cells to transport the oxygen my body needs.

In the kind of anemia that I have, the substance in the blood called hemoglobin is decreased: Hemoglobin is the protein in red blood cells that carries oxygen.

There are over 400 types of anemia and we can’t discuss them all. However, think of the ad for Geritol™ for “iron-poor” blood; blood that is low in its iron content. Because hemoglobin is the iron-rich protein that carries oxygen, often supplementing the diet with iron decreases or eliminates the symptoms of anemia.

But, many other types of anemia don’t respond to iron supplements. In some cases, red blood cells have a different shape (like the sickle in a hammer and sickle. This can greatly decrease the oxygen carrying capacity of the blood and can be quite painful.

Anemia can also be caused by chemotherapy for cancer or by blood loss during surgery. Women can develop anemia during menstrual periods. Basically, anything that decreases the body’s ability to transport adequate oxygen to its cells can cause anemia.

Symptoms of anemia can include weakness and fatigue, chest pain, dizziness or shortness of breath. This has been a very brief ‘rundown’ of anemia, it’s causes, and a few treatments. Further information can be found at:

http://www.anemia.org/patients/faq/

http://www.webmd.com/a-to-z-guides/understanding-anemia-basics

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We don’t have to stop living!

Work as a nurse often involved counseling patients as they mourned the loss(es) they experienced due to a chronic illness. Slowly, they realized that there would be no moving on with their new life until they let go of the past, realized that the past was just that: the past, and that limitations were now a part of their lives. It was my job to facilitate this realization. The losses, the limitations would possibly always be with them, but limitations didn’t need to hold them back from attempting to set new goals.

This came naturally to me, because I could empathize from having had several chronic illnesses. I’d ‘been there, done that,’ “I have an idea of what you feel, but I can NEVER know exactly how it impacts you and yours.”

But, for some reason, I naively thought that the losses I experienced at the hands of chronic illness, wouln’t have the same effect on me, my life or impact on my loved ones. 

Then came the diagnosis of lupus and more complications; my ‘plate’ got progressively full, limitations grew and it became painfully clear that I wouldn’t ever be able to do the  some of things that I used to. But, did I do like I counseled my patients to do, accept their reality (accept that I had limitation), accept my reality and move on with my life? No. Not until this afternoon.

What happened this afternoon? A dear friend, whom I think knowa  me (possibly better) than I know myself, pointed out that by holding on to the past and not embracing the present and what I can do NOW: was preventing me from enjoying the present. Why I didn’t ‘get-it’ until now is anyone’s guess. But, everything in it’s own time!

I was still able to point out the accomplishments of others, and help patients understand that certain things are no longer within their power to do; but did I take own advice? Not until I’d spoken with my girlfriend; she doesn’t know the impact she’s had on my life.

Achievement against all odds was all I’d known my whole life and once the ability to a physically achieve was gone and I could no longer achieve those things, I lived in the past. Until, I found thie blog and other pursuits.

So, my advice? Understand that you may not be able to do the things you used to do; but that it is okay. It’s hard, so very hard, but once we learn to live within our limitations, we do more living than we EVER thought possible. ~Annie

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It’s a hard habit to break!

Life with a chronic illness is complicated; why do we complicate things further? Complicating the uncomplicated is something that many of us come by easily and becomes habit and I’ll borrow a sentiment expressed in a film:

Some say that habits have a purpose. An example might be the habit of over-eating to feed our self esteem and relieve depression. However, is the weight gain worth the temporary relief of depressive symptoms?

We may entertain the thinking, “Because I need to be hyper vigilant in managing my illness, can’t I go ‘hog wild’ and drink, eat and smoke as much and as often as I’d like?”

Other habits might be overeating or smoking; and the last thing any of us needs or wants is a lecture about why certain habits might not be in our best interests; and you won’t find it here!

But, there’s another way to think about the same situation: Most habits have some risks. If this sounds a bit like the lecture I promised I wasn’t going to give and I’m sorry. But smoking carries with it more than a few risks/complications. The risk of hypertension is increased and because of the hypertension, the risk of coronary artery disease is increased. Also, the nicotine in smoke is a very powerful drug, making smoking a hard habit to break.

If we can’t use habits to cope, how dow we cope? I cope by reading other blogs, helping others from knowledge gained while I was in nursing, listening to music, meditating, imaging a life disease-free. Some cope with a strong faith. They KNOW that “All shall be well, all shall be well, all manner of thing will be well.” Julan of Norwich.

A Reality Check (livinglifewithraandfms.wordpress.com)

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Ways to Spread the Word about Lupus

The month of May is Lupus Awareness Month and Wednesday is the 1st of the month-OR MAYDAY! There are lots of lupus awareness raising events, not the least of which is the Walk for Lupus on the 18th and on Friday WEGO Health is sponsoring a lupus roundtable.

What can the average person with lupus do to raise awareness? For starters, have you seen the sides of this page, what color predominates? Yes, you’ve got it: POP (Put On Purple). For the ladies, a bit of lavender eye shadow dolls it up nicely!

I’ve linked to a few sites that have purple lupus paraphernalia at the right side, but two events bear mentioning up front: The Walk for Lupus on the 18th and this Friday’s (May 4), Wego Heallth lupus roundtable. For further information click on the link for Wego Health or The Lupus Foundation for America.

What can you do to further the awareness of lupus as a REAL disease, that has REAL consequences? If you have a blog, which some of you may, you can write a few posts during the month about lupus. Or, tell friends on Facebook how lupus has affected your life and the lives of others around you?  It is so important to emphasize, not only the physical toll that is exacted, but the financial devastation and emotional toll, strained relationships.

Besides telling/writing, you can raise awareness by TALKING about the illness. Due to the popularity of the internet and ease of accessing information, a mention of lupus and a few reliable research sites goes a long way. The Lupus Foundation of America and The S.L.E. Lupus Foundation maintain websites with reliable information about lupus.

Shy about asking people to donate money? On May 10, you see one of the logos I have on the right of this page, is to BAND TOGETHER FOR LUPUS AWARENESS. What exactly does that mean? On May 10, WORLD LUPUS DAY, text the word, LUPUS to 80888. When you receive the word YES,  you’ll be confirming to a gift. Then, text 10 people about lupus and it’s side effects. Then ask each person to donate $10 to the Lupus Foundation of America. This texting propagates and before you know it…

You can also send an eCard by filling out this form: http://donate.lupus.org/site/Ecard?ecard_id=1461&pw_id=1921 These are things to do on May 10th. During the rest of the month, there will be posts on other awareness-raising activities.

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Cut Out the “White Stuff” to Feel Better

http://selfhealthmd.com/WPF/

REBLOGGED FROM MARCO DE LA CRUZ, MD

Marco De La Cruz, MD
“As a board certified family physician with over 25 years experience, I have come to appreciate the strengths and weaknesses of conventional medicine. My search for answers to my patients’ medical problems has taken me into natural and nutritional medicine and more recently into the area of hormone balance and restoration. I have learned that beyond conventional medicine, healthcare must include a personalized integrative approach that incorporates natural and nutritional remedies to achieve optimal health. My education and experience in the healthcare field has enabled me to develop a client-centered mind/body/spirit approach that is tailored to the unique needs of those who seek my counsel.”

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Failure?

Years ago, it was suggested that I say, “I have failed” instead of I’m a “failure” when I made a mistake. Why? It took me a while to understand why, but then I realized: The latter is a negative statement about me as a person and it sends a message of ‘cold prickles’ to my subconscious, while the former sends a message of ‘warm fuzzies’ to my
subconscious.

When we face chronic illness, the fear of failure (and sometimes failure) is quite real. We might fear that we are not being a good enough mother, wife, friend, writer, teacher or whatever we might do for a living. There are likely a host of other potential feelings of inadequacy or failures.

Below are a few quotes about failure that I find to be motivators and inspirational:
“The only real failure in life is the failure to try.”
“The greatest barrier to success is the fear of failure.”
“Failure is not an option.”
“God doesn’t give me more than I can handle; I just wish He didn’t trust me so much.”

The word ‘failure’ is very emotionally charged and can be our friend or enemy. Below is a video which discusses how various people were initially considered to be failures, but that these very people went on to become historical greats.

Video from KarmaTube

Because you are LESS than what you’d like to be, what you’d expect of yourself, does NOT mean that we are failures. Our lives have simply steer a course than we had mapped out for ourselves. This is still a tough one for me to ‘wrap my head around’ but I get a lot of support from the disability community at the Disability Digest and their blogs and the people I meet online from all over the world. Check this out:

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