Tag Archive | Stress

How can I be affected by lupus?

Because all immune activity is so varied and each individual's immune response is just that-SO INDIVIDUAL, responses to lupus may be so varied. Some people have activity and flares of this illness often or all the time while others rarely have flares. Often there is an identifiable trigger. In my case it's stress and I notice a direct correlation between those horribly achy joints, and stress. This video tells how various people are affected and the differences they may have in symptoms and triggers-and how their attitude makes a difference in their coping with this illness

About Lupus

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Care for the caregiver!

Reprinted with permission of  “THE US IN LUPUS”

If we don’t have lupus, we know someone who does, or we know someone who has another chronic illness or who cares for someone who does. The impact that a chronic illness has on the caregiver is great and if that caregiver doesn’t get the break-TO MEET HIS OWN NEEDS-how much help can he be to the person who IS ill? The following are a few tips for the caregiver:

“Taking care of your own needs

Your wife. Your daughter. Your dad. A dear friend. If someone you care about has lupus, you are likely to be affected, too.

And if you’re that person’s primary caregiver, you may feel overwhelmed. Helping someone with a serious chronic disease is a tough job—and it can be a lonely and exhausting one. A common saying among people with lupus is that it isn’t a sprint…it’s a marathon. For caregivers, it’s important to take care of yourself along the way.

Master the uncertainties

The unpredictable nature of lupus, with its cycles of flare and remission, can be challenging. Does that stiffness in her joints mean she’s having another flare? Will he be up for our trip next week? Is she just tired, or is it lupus fatigue that’s been slowing her down? How well you handle the stressful uncertainties of lupus will shape how well you manage as a caregiver. So take one day at a time and keep the following in mind:

  • You deserve a break Your loved one may cycle between needing a lot of help and being mostly self-sufficient. One day you may be called on to help out physically—to help with chores, carry all the grocery bags, go to the pharmacy. Other days it may be the emotional impact of lupus that requires your steady and reassuring presence. And on still others you’re not needed at all. The see-saw of it all can be challenging. It’s true that you’re not the one with lupus, feeling the intense fatigue or joint pain or other symptoms. But you’re still human, and you deserve the right to have an aching back and get a cold and feel tired—and even complain about it. Accept that you’re doing the best that you can do, so cut yourself some slack, and take a break when you need one.
  • Ask for help Look around. Most likely, there are others who will pitch in and help—and may actually be waiting for you to ask. Have your brother-in-law pick your loved one up from the doctor’s office. Ask a friend to swing by the grocery store. It doesn’t mean you aren’t taking great care of your loved one if you ask others to help out.
  • Hold on to who you are Avoid losing yourself in the caregiver role. Stay in touch with your own identity. Keep your Saturday tennis game going. Read the book for your next book club—and go to the meeting. And don’t feel guilty about it.
  • Take your emotional pulse Take note of how you are doing emotionally as time passes, and get professional help if feelings such as depression, restlessness, resentment, or irritability, develop at any point.
  • Connect with others The caregiver role can be lonely. But there are tools to fight back against the isolation. Make connections with others online or through a lupus caregivers’ support group that meets regularly. Ask the doctor or go online for links to local groups through a lupus advocacy group. These kinds of connections, and the awareness of what others deal with, may help you understand that you are not alone.”
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Patience is a virtue

Is this my last ‘test’? I hope so: In my attempts to straighten out some kinks in my computer system, your inbox was bombarded. Thank you so much for your patience.

Patience. That word is packed with punch!. Do you remember the old yarn about ‘patience?’ ‘Patience is a virtue, possess it if you can; SELDOM found in woman, NEVER FOUND in man!’  People who have a chronic illness need patience in spades and to this end, we’ll discuss how patience and meditation are survival ‘musts!’. 

When we’re patient, we’re able to remove ourselves from extraneous chatter.’ When we do this, we can see facts objectively, with a clear head, making us more able to reframe our thoughts. THAT’S what I think most of us with chronic illness need.  This is the goal of some meditations: To still your mind so that you can reframe your inner dialogue. Many meditations invite you to imagine someplace that was very relaxing and peaceful to YOU.

The place I chose is in a meadow high upon a mountaintop in Wyoming. I lie-in the grass which is about 6 inches high while the sun shines high in the clear blue sky; dotted with fluffy clouds. Then I involve all my senses. First, what else do I see? What are all the things I hear? Complete silence, or is a plane flying overhead on occasion, or is there an occasional bird or cricket? What do I feel? I feel my horse’s gentle nudging on my skin on occasion as he grazes. Do I feel sun, cold, wind or rain on my skin? Does the long grass scrape or sooth my skin?

Do I speak? Is someone in the same area, though I don’t talk to him or her?  What do I smell? I smell the woods and pine cones. and the outdoors from last night’s rain, has a fresh scent.

Exhaust all of your senses and then relax, allowing yourself to walk slowly off the mountaintop (or other favorite place) and come back to this place.

Now do a short assessment of the things that bothered you before your mini-journey and compare that to those things that bother you now. Most likely, the 10 minute ‘vacation’ you took, recharged your batteries and your headache, while not gone, is likely less bothersome!  

Besides making you feel better, changes can be measured objectively. Before the imagery, blood pressure was taken and then taken after meditation. They dropped considerably. Also, blood chemistries were recorded before meditation. After imagery, those same chemistries recorded. Amongst many markers, cortisol levels were substantially lower after meditation. Heart rate was lower and diabetics had a lower blood sugar. 


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Laughter is the Best Medicine

The humor in this short video was unsuspecting and I was caught off guard! If you can, play this in full screen with the speakers on. No matter from what country we hail, FUN IS FUN and LAUGHTER IS LAUGHTER!

Fess up, you let out a little howl as you watched, even though the fellow who jumped suffered physicaly and emtionally before he had his laugh. By the time the video was over this fellow was laughing AT HIMSELF and with others. What has this got to do with lupus? Plenty.

Every day, we go from doctor’s office, to the lab, for a test or  two, to physical therapy or other treatment. Then, the next day, it all starts over again; we may be too tired that we can’t do much without pain. Don’t you ever feel the need for a little break in the routine which has become your life? I know that I do and if I do, it’s a pretty fair  guess that I’m not alone!

Do non-handicapped people feel that not working is a BREEZE? I wonder about that every now ad then. However, TRYING to do a bit every day is a full-time job. However, if you over-do it,  you know that if you do over-do it; you’ll pay. Finding that balance is tough to achieve.  Every now and then, you find a video which provides this kind of levity (by the way, there are tons more where this came from: YouTube, Vimeo, Facebook) comes along and breaks up what is possibly a hard day-or a boring day. To able-bodied friends, this may simply be ‘funny’ but to those who are disabled by an illness, ANY ILLNESS, little jokes like this, are more than distractions, they’re sometimes live-savers.

Laughter  also decreases stress. Remember, yesterday we spoke of the stress hormone cortisol? Well GOOD BELLY LAUGHTER has been shown to decrease levels in the blood or cortisol (the stress hormone). Medical students were divided into 2 groups  and one group saw a funny movie. The other group was shown a disconcerting, scary, bloody movie. Blood work was done shortly after the movies which showed that the medical students who had been shown the disconcerting movie had extremely elevated cortisol levels in their blood. The lower amounts of cortisol, the fewer flares, or decreased intensity of flares, and by and large we feel just a bit better.

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Stress, lupus and how not to let it rob you of your life!

Lupus, and other chronic illness have robbed you of a good part of your life. Does stress have to rob you of the rest? Briefly, I’ll discuss what stress is, how to keep it in perspective and ways to keep stress from controlling our lives. A situation is stressful, when we perceive that situation to be threatening to our well-being. Stress is a matter of perception; I might perceive a situation to be threatening; when you might not.

The stresses of yesteryear were mostly physical, like being attacked by a bear while hunting for the family dinner. The stressors of today are largely emotional. We don’t hunt for for food anymore; but things still cause stress. like a flat tire or the boss threatening our job. However, the response to stress is the same, whether it’s cause is physical or emotional.

The stresses of lupus are both physical and emotional. Physical stress might be having the body poked and prodded on a regular basis when we’re hospitalized. There is also the emotional stress of, ” Will it get worse and how?” “I long to be like other people and be active!” and my personal favorite, “But you don’t look sick!”

Physical or emotional, today or thousands of years ago, we respond to stress pretty much the same way: blood pressure, heart rate and respiratory rates increase, glucose levels in the blood increase. Basically, our body diverts blood to the muscles and away from organs that don’t need it like the stomach. This is called the stress response and the exact physical reasons for it don’t need to be described here.

Because of increased glucose in the blood, the ability to fight infection is decreased in stressful times. When stress is prolonged, the constant release of glucose can contribute to the onset of diabetes. Stress can cause over-eating and underrating. Stress can result in smoking and all of the complications that may come with smoking. Stress contributes to hypertension and heart disease.

Because stress can wreck such havoc with our health, is it possible to change how stress affects us? Yes it is; but the first step is to recognize that we’ll never be able to be completely stress-free. Nor, do we want to.  Some stress is good, it’s motivating, warns us of danger and prompts us to act.

Most ”shoulds’ aren’t good for us, but one that is: we SHOULD start to incorporate wellness activities into our daily lives. This might mean participating in relaxation exercises, progressive muscle relaxation, visual imagery, yoga, and reframing how you look at a stressful situation. In another post, I’ll discuss reframing, but basically, ‘reframing’ is another way of looking at the same set of facts. (You’ve heard, “there must be two sides to every story…’)

I find music to be relaxing and listening to it takes me to another place. While I appreciate the voices of the singers, I’m not dwelling on my life and i don’t find myself saying, “Well, they’re lucky, they weren’t cursed with lupus.” I find myself acknowledging that they may have other struggles; and appreciating that they share their gifts with the rest of the world. Two pieces of music that have caught my attention are below. You wouldn’t believe it, but the little girl who sings isn’t much more than 12-if that and to see her perform…!

The second video is from Les Miserables and this gentleman’s voice, Alfie Boe is a something that i marvel at. Just when I think how badly I may ‘have it,’ I realize that I don’t know their struggles. Bottom line, they have such a gift to give and for a minute I forget my troubles and drop my self-pity at the door and again lose myself in their gifts.


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Wellness, attitude, stress and lupus

I was just looking over older posts and came across this from June 3. 2011 at: http://lupuschronicles.com/2011/06/03/health-is-more-than-the-absence-of-illness-illnesses/ . I think every now and then, certain topics need revisiting:

It is so true that having a positive attitude, living as stress-free a life as possible and being as healthy as you can be will maximize your health, whatever chronic illness you might have. It is with these 3 things in mind, that I'll address lupus.

How does having a positive attitude affect lupus? I can only speak for myself that a positive attitude does numerous things, the first of which is to 'fool' me into thinking that all is well.

I know darned well that my health has it's challenges, but what good is it to me when I fall for that 'cup half empty' stuff? Sure, I fall every now and then, I'm human; but I have to remind myself to put a statute of limitations on how long I'll stay on my pity pot: Then I need to force myself, or ask others to force me off.

That brings us to living a stress-free life. Stress is a bad thing, we've heard it gives headaches and a multitude of other ailments. There's so much more. A good 75% of all ailments that doctors see in their offices made worse by stress.

They're very real though. Lupus symptoms and flares are often worse in times of stress. The onset of lupus may be directly triggered by stress, too.

For example, the joint pains of lupus may be worse, insomnia and seizures may worsen, the cutaneous effects (especially in sufferers of discoid lupus) may worsen in times of stress. Lupus' characteristic fatigue may be such that getting out of bed (just thinking about it!) is impossible. These are just a few symptoms that may worsen in times of stress.

Finally, be as healthy as possible? But wait, we're already sick. But we can make the choice to be healthy: By that I'm not saying that we can wish ourselves to health and lupus will be a thing of the past.

But we can do what we need to do so we don't fall prey to complications from lupus. Some are unavoidable (lupus nephritis and CNS lupus come to mind), but we can exercise regularly to do all that we can do, so that we don't succumb to cardiac and pulmonary manifestations of lupus that might be controlled with a decrease in weight.

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Stress and the Immune System?

Have you noticed that your symptoms often worsen when you’re stressed? In lupus or other autoimmune diseases stress directly correlates with flares. Here’s a short explanation why:

In response to stress, our adrenal glands release the hormone cortisol, resulting in a series of predictable responses which include, but aren’t limited to an increased heart rate, increased breathing rate, increased sweating, and an increased energy production. This response is known as the ‘fight or flight’ response, or stress response.

Cortisol has powerful anti-inflammatory and immunosuppressive effects. Due to its’ anti-inflammatory effects, cortisol (Solu-Medrol®, prednisone) is a lifesaver in asthma and other autoimmune diseases where inflammation has run rampant. The immunosuppressant properties are used to make sure that the body does not reject transplanted tissues or organs.

The downsides? In addition to suppressing inflammation, cortisol suppresses our immune system, making it more difficult for us to fight infection. Cortisol also increases blood sugar, so diabetics may have a harder time controlling their blood sugar. There can be increased appetite leading to weight gain and decreasing density of muscle mass and bone density.

Constant secretion of cortisol can result in lowered resistance to infections and stress related illnesses like backache, headaches, insomnia and colds. Each of these is associated with other problems, high blood pressure and coronary artery disease, to name a few.

Since cortisol is secreted when we’re under stress, and stress is a frequent ‘visitor’ to our lives, we must learn to manage the stress in our lives. One way might be to practice relaxation exercises, visual imagery, have a belief system, take anger management classes and read books.

One physician practiced medicine and over the 25 years that he practiced medicine, Dr. Marco De La Cruz realized a connection between the mind, the body and the spirit. He has also noticed quite a connection between these disciplines and has explained them in a book,
“Balancing Act: A Mind-Body-Spirit Approach for Optimal Health”

In his book,Dr. De La Cruz  explains and emphasizes how our lives must maintain a balance between the mind, body and spirit; and what happens when we interrupt that balance. It was from Dr. De La Cruz that I learned that flares correlated with the days that I was undergoing a stressful situation; it all made sense!

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