Tag Archive | Coping with Chronic Illness

Basic Lupus Treatment and Steroids

Many of us would be surprised at the amount we already know about lupus that the average consumer does not. For example, often we know what our ANAs and ESRs are. We know to compare them with previous ones and we might understand why they might be elevated. For example, often we follow our ESR (erythrocyte sedimentation rate) as a measure of inflammation in our bodies. Well, if it is elevated, it means that there is inflammation SOME WHERE IN THE BODY. More specifically, we might compare our ANAs.

We’ve learned over the years, that treatment for the symptoms of lupus involves treating the inflammation that causes those symptoms. That’s the reason doctors often suggest NSAIDs (non-steroidal anti-inflammatory drugs) like “Aleve” or ibuprofen.

Oftentimes, NSAIDs are adequate to control pain as they decrease inflammation which causes the pain. But, sometimes NSAIDs are not adequate. So, pain is managed temporarily with the steroid, prednisone. Sometimes, a dosepak is prescribed, a burst of an oral steroid followed by decreasing doses of that same steroid for 5 or 6 days.

Steroids should always be withdrawn slowly; we all know that. But do you know why? We might experience symptoms of the withdrawal (weakness, fatigue, body aches, joint pain).

The main reason for weaning from steroids slowly is because the adrenal glands already produce a steroid, cortisol. When you started taking oral exogenous (from an outside source) steroids, the body began to slow down it’s production of them over 2-3 weeks. As time passed, your body became completely dependent on oral steroids as endogenous  (produced from within the body) stops.

When the exogenous steroids are to be stopped and steroid therapy reintroduced, it is important to slowly taper the amount of steroids that you take because it ‘time’ for the adrenals to ‘kick back in’ with their production of cortisol, so exogenous steroids have to be slowly withdrawn. Why? Because cortisol is the steroid responsible for the ‘fight or flight’ response that our body mounts to stress, so something called adrenal insufficiency or adrenal crisis can result. We must be able to engage the fight or flight response, so it is important, very important that steroid tapers be followed exactly as your doctor orders.

http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923 retrieved from the www: 9/19/2016

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Chronic care involves more than clinical expertise

Who knows you better than anyone else? Not your parents, your husband, wife, children or best friend; but YOU!

But, their many years love for you becomes immaterial when you’re first diagnosed with lupus or another chronic illness or autoimmune disease. Friends and family likely remember their reaction to your diagnosis and their feelings of powerless to protect you from the ravages of lupus or other autoimmune disease.

On the other hand, your doctor remained quite objective, even aloof, through the maze of tests ?

When you were first diagnosed with lupus or another autoimmune disease, you needed some hand-holding, right? At a bare minimum, you wanted the feeling that your doctor is in this for the long haul; you don’t feel those warm fuzzies, those vibes. You only feel ‘cold pricklies.’Why?

Someone needs to be the objective person in the room; and often your doctor is it. Much to your dismay, it’s not his ‘job’ to make you feel ‘good’ about having a chronic illness. His job is to guide you and your family through the maze of tests and explain why, for example, the lab needs 10 tubes of blood for one test! Or, why they need to do a test  that was done just did last month!

You doctor can be the incredibly excellent teacher, he and his team clinically astute, but he doesn’t work alone. He can’t. Instead he relies on your accurate reporting of your symptoms.

He needs more than a statement, “I didn’t get much sleep last weekend.”  He needs a partner, he needs a patient who will give him information like, ” I’ve not slept much more than 4 hours every night for the past 2 weeks and my boss has been on ‘my tail.’ Could that explain my flare?

Unless the doctor knows those little details (which may seem unimportant to you)-how you slept, that you didn’t sleep much, that you were in an unpleasant relationship which didn’t end well, he/she can’t put facts together and create a clinical picture.

A picture like, “Well, sleep causes an inflammatory response in the cardiovascular system. Could that explain the rise in her blood pressure? It also decreases the body’s immune response. Could this explain the frequent colds and flu that I’ve noticed?”

If you don’t let your doctor know things, even things that you don’t think are important, you’re doing yourself a disservice. Keep a journal of the time you rise, the foods you eat and the symptoms you experience and let your physician know more than you think he needs to know. He/she has a way of listening to your story and still getting the facts that he needs to know.

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Part 2 of Tackling ACCEPTANCE that my illness is chronic

Welcome to part 2 of ‘how I’m how I’m actually going to accept the challenge of having a disability that can’t be seen and not being able to live the active lifestyle I used to.’ Well, starting with that active lifestyle. I first fell in love with competitive swimming and did that despite burns and epilepsy; I suppose I was above average, but I had what is called grit:

         and this  


I was always doing something, so imagine my dismay and shift in the way I thought about life, when I had to come to a grinding halt, mainly because of lupus and Sjogren’s Syndrome, Shrinking Lung Syndrom and Pulmonary Hypertension and osteonecrosis.

First, I need CONVINCING that my life has changed and is likely not to return to the life I know. But, the need is to convince myself; I need to be totally honest with myself and realize that the days I once knew are gone-FOR GOOD. But, and I emphasize the ‘but’ here, I need to realize that this is not a bad thing (I’m developing clarity as I write about this issue).

Then, I find the things that I already do (like this blog) and decide that I’m going to put work into it. Or, it has always been suggested that I write a book. Hmm. I can always self-publish; but, my goal for writing a book would be to make bony, which is not what the goal to writing should be. Then I can pursue listening to the 20 or so books-on-tape that I have, or the 20 or more Kindle for Mac books that I’ve downloaded.

My husband wants a website. I’ve taken an internet marketing class which taught us that, so I can create a site, load his portfolio; all we have to do is find a host. Already, I can see TOO MANY THING THAT WOULD KEEP ME BUSY 😎

Unfortunately, as a child, I developed hobbies that reflected my former level of activity. I was active then and until I was 50 or so. I kayaked in Lake Michigan, biked along Lake Shore Drive, skied the Rocky Mountains and hiked. So, thus will be a venture, a venture into my soul, but I invite you to join me and create your own path. I’ll probably stumble and fall a few times, deciding that knitting is for me and trying it, only to find out that I don’t have the patience. But as of today, 3-23-2014, I commit to the search for new hobbies and new meaning to my life.

My challenger shall remain anonymous and may not be satisfied, but from now on, THIS IS MY LIFE!





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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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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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Overly Obsessed?

Do I seem overly obsessed with the hit counter on my blog? I try not to be, but that hit counter means several things. It means that between all of us, we’ve told 12,000+ people that lupus exists, that other chronic autoimmune diseases exist. We’ve spoken about how we cope, what various disability strategies might be and the application for Social Security Disability, to name a few.

12,000 people have been exposed to the fact that lupus EXISTS. Many of you knew lupus before you visit, but some did not, or did not recognize that lupus and other chronic autoimmune diseases could wreak the havoc that they do. So, I like to think that in some small way, we’ve influenced, we’ve spread the word. Give yourselves a pat on the back and many thanks. Warm fuzzies to you all!!

There have been discussions about side effects of lupus and other autoimmune diseases, what IS an autoimmune disease and other related topics.

But, my favorite, and what I think may be the most fruitful and beneficial, is how we cope with all of life’s challenges, health-related or not. Here is a coping strategy with universal appeal, is a video favorite with timeless appeal:

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“How Great Thou Art”


We all cope with life or the stressors of life in different ways. Some  meditate, some relax with friends, some people go to the gym, some people escape into nature; there are a myriad of ways to cope with the difficulties we encounter in life.

Since time began, many people’s coping mechanisms often revolved around prayer and religion; organized or casual.  The above song represents just one way of praying, venting and BELTING out one’s feelings.

So, even if your voice isn’t quite opera house quality, what matters is that if singing is your outlet that you sing and find a safe spot in the shower!

Just a few minutes away listening to this phenomenal song sung by a phenomenal singer is enough to make you forget your troubles and carry you to a different world.

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