Living With Lupus

For many people, learning there is a name for the nagging, painful and sometimes debilitating symptoms they have been suffering from is a relief. But once a patient learns they have lupus the next question is usually, "Now what?"

We're here to help you navigate through life with lupus, learn the latest treatments and medical options, and share experiences on achieving a full and productive life.

Do you have any tips that make your day easier? Send them in. We'd love to hear from you.

Now What?

Whether you're newly diagnosed or a long-time lupus patient, there are important things you can do to contribute to your overall wellness. Aside from establishing a good working relationship with your doctor and having a solid understanding of the disease, first and foremost you can maintain a positive attitude. Yes, some days that's easier to accomplish than others, but a positive outlook and forward-thinking attitude is a huge leap towards managing your wellness.

Your attitude plays a key role in how your body feels because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance your quality of life will ultimately help you cope with the challenges that can go hand-in-hand with lupus.

Equally important is to understand and accept that until there is a cure, lupus is a part of your life that requires continuous attention. By respecting the illness, establishing realistic lifestyle goals,
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and making a commitment to carry them out, you will have a greater sense of balance and a proactive approach to your wellness. You can control how you cope with lupus rather than be controlled by the disease.

You Don't Look Sick

Lupus patients hear that all the time. Lupus is the "look good, feel bad" disease, so many times, friends, family or colleagues don't even realize you are not feeling well. That means making lifestyle adjustments and altering your daily and weekly routines and commitments is in order. And, it could mean speaking up and asking for assistance in accomplishing tasks that might normally be easy for you to handle.

Consider short cuts in your daily activities. Plan "must do" chores and activities before you over do it with less-than-necessary energy-zapping tasks. Obtain household or child-care help if possible. And, learn to prioritize commitments so you are able to enjoy your most meaningful ones. Proactively making these types of adjustments will help ensure you are not pushing yourself too hard today only to pay the price with increased fatigue later.
 
What's Up Doc? 
 
Since lupus is an on-going, chronic disease, you will be spending a considerable amount of time with your doctor over the years.  It's important that you develop an honest and open dialogue with your healthcare professional as you work in tandem through the ups and downs of the illness. It's also vitally important that you see your doctor on a regular basis, take medication as prescribed, and follow-through with your necessary blood and lab tests.
 
Write On and Speak Up!
Lupus patients need to take an active role in their wellness and work a little harder to stay healthy.

One approach is to keep a diary or journal of how you feel and what the circumstances are when you have a good or not so good day. Paying close attention to your body and documenting the signals it sends is an important way to learn what triggers your flare ups, which medications work best, and how you are coping with the stress of having a chronic disease.

Journaling also helps you track your symptoms so you can have meaningful and detailed conversations with your doctor. Reviewing your notes and organizing your thoughts and symptoms before medical appointments will help maximize your appointment time and allow you to ask questions that can lead to the best possible treatment options for your specific needs.

Use It Or Lose It

Yes, the dreaded "e" word - Exercise! Some of us love it, some of us hate it, but regardless of how you view working out, it's especially necessary for living with lupus successfully.

Talk to your doctor about the best and safest exercise options for you, then set realistic goals and build gradually to a program that's right for your individual needs.

Not a fan of walking? Consider Pilates, yoga, tai chi or warm water aerobics. All are helpful in building muscle strength, increasing flexibility and reducing stress. Your local YMCA and/or community centers may offer programs through the Arthritis Foundation. To see what is available in your area visit http://www.arthritis.org/programs.php

Fatigue

There is no clever heading or buzz word to describe the extreme fatigue lupus patients experience. Simply put, lupus fatigue is like hitting a brick wall and not being able to get up - Period.

It's caused by a variety of reasons primarily due to inflammation, anemia, chronic pain and chemicals known as cytokines. The best way to counteract fatigue is to prioritize your time and pace yourself. Know that if you stay in bed you will feel weaker but if you try to be "Super-Patient" with non-stop activities you can cause a flare that could leave you down for the count. So listen to your body, rest when you need to, and focus on balancing your lifestyle.

The Great Outdoors

It's fairly easy to spot smart lupus patients enjoying a day at the beach, on a hiking trail, or taking a leisurely walk on a sunny day. They're the ones wearing long sleeves, pants, and a huge hat! They are also slathered from head to toe in sunscreen. But, they are enjoying the outdoors and that's what counts!

Lupus patients are constantly warned about the effects of ultraviolet A and B (UVA and UVB) rays from the sun because these rays can trigger lupus flare ups.

In general, it's best to develop the habit of applying sunscreen every morning before you leave your home and reapply every 2-3 hours as the day progresses if you remain outdoors. And wear a wide brimmed hat to protect for your face and neck too.

Remember, the sun is essentially everywhere, all four seasons of the year, even through a car or office window, so sunscreen is a fact of life for lupus patients. Many effective over the counter hypoallergenic brands are available with broad spectrum protection and an SPF of 30 or greater, so try a few to find the one that works best with your skin type, then wear it daily.

Sun Inside?

The sun isn't the only source giving off UVA rays. Florescent light bulbs do too and that's a possible problem for people with lupus what are especially sensitive to UVA rays. Florescent lights may cause a "sunburn" or trigger a flare up in some lupus patients. If you have these types of lights in your home, replace them. If your workplace uses florescent lighting, consider wearing sunscreen to work. And, it's not unreasonable to request the fluorescents in your direct work area be removed or turned off, if possible.

Where Did I Put That?

Having a hard time remembering names, appointments, events, or where you put your car keys? This could be attributed to a "lupus fog" that's playing tricks with your memory. Medical professionals refer to this as cognitive dysfunction or cognitive impairment. "Lupus fog" or "lupus brain" is a reflection of a vascular spasm which can reduce the amount of oxygen getting to your brain.

These symptoms may come and go but it's best to discuss them with your physician. Treatment options are available and include referrals to psychologists, speech therapists and physical therapists who can help you cope with memory exercises and strategies for improved concentration as well as initiating treatments such as biofeedback.

Ouch!

Swollen joints are, unfortunately, common with lupus. Applying ice to painful areas works much better than dry heat. Soaking in a hot tub, Jacuzzi or shower, even a trip to the sauna could help too.

Pain management medications are also available through your physician. Track your pain and swelling and watch for specific activities that might trigger flares so you and your doctor can decide the best treatment for you.

It Takes A Village

A strong, reliable support network is important when dealing with lupus. Helping family, loved ones closest to you, and possibly even employers understand the disease and what you are going through, will allow them to offer support and acknowledge your altered lifestyle and occasional limitations. Asking for help isn't always easy but sometimes it's necessary.

Support groups and online networking with other lupus patients allows you to reach-out, share information and experiences, and perhaps even inspire others facing similar lupus issues. Along the way, you can gain invaluable support from others who understand first hand the unique emotions and challenges you are facing.

Lupus International makes it easy for you to get connected. Click here to join our network.

New Normal

Obviously, no one wants to have a chronic disease with no current cure. But, progress is being made and lupus patients are living fuller and more productive lives today then they have in past years.

So whether you are newly diagnosed or have been rolling with the punches of a long time lupus diagnosis, learning to cope with your "New Normal".  It is a process that takes time to adjust to and master, both physically and mentally.

Be kind to yourself and know that you are not alone. Work closely with your doctors for a wellness plan and reach-out to those you love as well as other lupus patients to stay positive and motivated. Lupus International is here to help you every step of the way.