Frizzled, Frazzled, Done

As lupus patients, I hate to say, we have experienced more emotions and feelings than most others we know. I hate to say this because when I think I have it all More »

Abandoned?

Continuing in our theme of emotions:   I suspect that every lupus patient has felt abandoned at some time during their life with lupus. In fact, I’m fairly certain of that statement. More »

Can You Be An Emotion?

Can you be an emotion, or more specifically, can you be your emotion(s)? I don’t ask this lightly, but with all seriousness. Think about it for a couple of moments. Do you More »

Will the FDA Listen to the Lupus Community? It’s up to You!

The Food and Drug Administration is about to embark on a project to get patients’ take on chronic illnesses, and lupus is not (yet) on the list! But you can change that. More »

Discouragement

How many times have we as lupus patients been discouraged with something regarding our illness? We are discouraged when we don’t feel well. We are discouraged when we can’t do what we More »

 

Category Archives: Uncategorized

Appreciative

How often do we, as lupus patients, stop to appreciate all the wonderful things in our lives?

Exactly.

More often than not we are grumbling about living with a chronic illness; complaining about the lack of funding for research; lack of research that produces results; lack of drugs; lack of physicians; and on and on infinitum.

But not everything is bad.

appreciativeI get updates about lupus in the news every day and the past month has been enlightening. The last two weeks have been astounding. The number of research projects being conducted with regards to lupus are growing, and the findings have been great.

Many different ways to approach the same subject are underway. Many new doors are opening and the possibilities seem to be endless, but ever so hopeful.

Hearing news like this after suffering so many years of nothing makes me appreciative for all involved.

  • I appreciate the researchers and the companies who fund these projects
  • I appreciate the patients who are brave and willing and register to be in the clinical trials
  • I appreciate the pharmaceutical companies who take huge risks in trying to bring new medicines to market. I’ve seen the hoops and rooms full of paperwork they have to go through to have something approved by the FDA
  • I appreciate the FDA for doing its best to keep us safe from harmful medicines and procedures
  • I appreciate the organizations like LRI (Lupus Research Institute) and ALR ( Alliance for Lupus Research) for being on the front line of funding, advocacy, and for being the voice of those who aren’t normally heard
  • I appreciate all the physicians who treat the lupus patients on a daily basis
  • I appreciate social media for allowing lupus patients to have access to other lupus patients so they don’t feel alone and isolated
  • I appreciate groups such as com for starting on-line groups for patients to use to disseminate news and forge connections
  • I appreciate all the lupus bloggers for keeping this disease in front of so many
  • I appreciate the truthful news agencies who by reporting the news allow us to be appreciative

If you aren’t feeling particularly appreciative, look around. There may be more going on than you know.

From the life of Wanda M. Argersinger

© 2015 Wanda M. Argersinger and The Lupus Support Network, Inc.

www.thelupussupportnetwork.org/blog

Can You Contain Excitement

Think for a minute and then ask yourself what was the last ‘good’ emotion you experienced? Can you even remember when it was? If you can remember when, can you remember what brought on this emotion? Did it last very long or were soon wondering where the good feelings went?

I am around lupus patients on a daily basis, and for the most part they are upbeat. Sure they experience lows in their lives, but they don’t seem to live there. But I hear just as often from patients who never seem to experience the highs of life or the good emotions. They appear to live in a life of gloom and doom.

It’s true that lupus patients do experience more down emotions than up emotions, but that doesn’t have to be so. Sure many patients suffer from depression, and of those, quite a few suffer from depression on a daily basis. But depression alone does not mean that we can’t also experience better emotions.

excitementExcitement is one of those emotions. Think about a child in the weeks just before Christmas. When I think of excitement I often think of it in this way. But I also think of excitement when I read the daily news about lupus. If you don’t follow this news like I do you may not know how much research is being conducted with regards to lupus. There is research being done hoping to find new medications, new treatments, new testing procedures, and research that everyone is hoping to find the cause of lupus.

This last week I read about a new procedure that has been developed that can provide physicians with information needed about the kidneys of lupus nephritis patients without performing renal biopsies. That’s right. Your physician can get the information he/she needs without the invasive kidney biopsies you may have experienced in the past.

For all lupus patients, but especially those with lupus nephritis this is EXCITEMENT inducing news. This new procedures uses something called Raman scattering signals to provide the required information. According to one of the researchers “We are proposing the nephrologist will puncture the patient’s skin, go to the surface of the kidney, and not puncture the kidney, but probe the surface of the tissue and acquire Raman signals,’ Mohan said. ‘The patient will feel a little pinch and poke through the skin, but the kidney is not hurt at all.”

Along with excitement I am feeling anticipation. Just like Christmas for a child, I can hardly wait for this to be on the market and widely accepted and used.

Are you excited now?

 

From the life of Wanda M. Argersinger

© 2015 All Rights Reserved for Wanda M. Argersinger and The Lupus Support Network, inc.

www.thelupussupportnetwork.org/blog

Will the FDA Listen to the Lupus Community? It’s up to You!

The Food and Drug Administration is about to embark on a project to get patients’ take on chronic illnesses, and lupus is not (yet) on the list! But you can change that. The following is an appeal LFNC is actively joining as part of the Lupus Research Institute National Coalition.

The FDA is currently inviting public comment on what disease areas it should include in public meetings to be held in the next couple of years. So let’s get lupus included!

We’re urging everyone to write to the FDA about why lupus must be included.

Please hurry; you need to respond by December 5.

What You Need To Do (click here for sample letter):
Use the outline below as a guideline to write your own letter, in your own words.
The FDA is using four criteria to determine what conditions it will hold meetings about. In your letter, please describe your own situation or that of a loved one to illustrate how lupus meets the following criteria:
Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
Disease areas for which aspects of the disease are not formally captured in clinical trials;
Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives; and
Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly).
Must include that you are responding to Docket No. FDA-2012-N-0967.
Submit electronically using this link.  Or, mail your letter to: Division of Dockets Management (HFA- 305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852
Once again, a sample letter is available here. Please let us know that you have contacted the FDA by replying to this post.

 

© The Lupus Support Network, Inc. and Wanda M. Argersinger

All Rights Reserved

Discouragement

How many times have we as lupus patients been discouraged with something regarding our illness? We are discourageddiscouraged when we don’t feel well. We are discouraged when we can’t do what we want. We are discouraged when we think our medicines don’t work. We are discouraged when we thing our doctor isn’t listening to us, or won’t give us the medication we want. We are discouraged because there isn’t a medication that works well for us. We are discouraged because no one understands how we feel, what we are going through, or why we feel the way we do. Sometimes I think we are discouraged because it’s a normal feeling for us and we have felt that way for so long that we don’t know any other way to feel. Being discouraged has become a way of life for us. If that’s true, then how do we get out of being discouraged and find something that makes us feel other emotions; something that allows us to see there is good in our life even if we live with lupus.

I was always told, and know this to be true, when you are struggling or feeling down, help another person. I get to do this quite often. I can be having an incredibly bad day then the phone rings. On the other end is a lupus patient who really needs someone to listen. After I hang up I feel so much better. I used to wonder why this occurs and then I realized that my problems were small in light of what the other patient is going through. That’s often the case with life.

When I was in high school there was a writing that was done into a wall hanging; writing I read every morning. It gave me some of the best advice and guidance. I still read it today. It’s called Desiderata. You can find it on the internet.

Some of the very wise advice it provides is:

  • If you compare yourself with others you may become bitter and vain for always there will be greater and lesser persons than yourself
  • Be yourself
  • Many fears are bone of fatigue and loneliness
  • With all its sham, drudgery, and broken dreams it’s still a beautiful world

Desiderata offers so much more wisdom. These are just a few that I chose to offer here. Of all of these I believe the first and last speak the loudest.

If we sit and compare ourselves to others, even to the person we were before our diagnosis; it serves no purpose other than to make us unhappy. We should learn to be ourselves and love ourselves. The last one, for me says, whatever we are going through is temporary. Look at the world. It is still beautiful.

 

© The Lupus Support Network, Inc. and Wanda M. Argersinger

All Rights Reserved

Healthy Foods Enhance Life for Those with Chronic Illness

We are pleased to have a guest post for this blog from Melanie Bowen.

“Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics”

Healthy Foods Enhance Life for Those with Chronic Illnesss

When someone has a chronic or terminal illness, proper nutrition is essential for regaining energy, stamina and even physical and emotional healing. For instance, if a patient with mesothelioma, a rare form of cancer, makes nutrition a priority, they are much more likely to live a life with more energy and clarity. Some experts agree that eating foods rich in antioxidants can actually lengthen the life expectancy of some patients with terminal illnesses and the quality of life of those with chronic illnesses.

Antioxidants protect and even repair cells from damage done by free radicals. Antioxidants help boost your immune system, which makes your body more likely to be able to fight off infections. Beans, plum, beets, broccoli, nuts and sunflower seeds are just a few of the foods that are rich in antioxidants.

Whole wheat, grains–such as brown rice, and oatmeal are all excellent, nutritional choices to enhance your life, even when you are dealing with a chronic illness. These foods specifically help protect your heart from disease and allow your body to function at its most optimal level.

Fiber is another important building block to proper nutrition. Raspberries, pears and apples (with the skin on them), are all excellent sources of fiber that should be added to your daily diet. When you have a chronic illness, it is especially important to maintain a healthy digestive tract and keep digestion flowing as naturally as possible. Eating foods rich in fiber will help ensure a healthy digestive tract as well as keep you comfortable and free from bloating or feeling “backed up”, if you will.

There are nutritious foods that also help to give you boosts of natural energy. Foods such as mixed nuts, chicken, sunflower seeds, cheese, milk and yogurt are all excellent sources of protein that will give you sustained energy and healthy nutrition as well.

According to the Foods that Heal blog lemons and limes not only heal simple things like cuts and bruises but lemons and limes could actually aid in preventing cancer and heart disease. It has been found that even the zest (peeling) of lemons and limes contain many beneficial health benefits from aiding in healing infections to fighting various types of cancers.

Overall, there are many varieties of food that contain many different health benefits. By choosing a lifestyle of healthy eating, you can live a more productive, full life with more energy and help protect your body from various illnesses and infections.

Handling The Stressors In Your Life

Most of us who live with chronic illness know that stress can be a key factor in how we feel from day to day. What many of us fail to realize is that there really is something we can do about stress in our lives. This particular blog is dedicated to Mary Ellen Neal, A.R.N.P. from Gulf Breeze, Florida, who taught a dear person in my life that stress does not have to kill or wreck your life. That you can control a lot of the stress in your life, and thus make your life a better place to be.

According to Mary Ellen, we all have stressors in life. Isn’t that the truth? But stop and think for a minute about your stressors. Look at them. Examine them. Learn where they come from. Be aware of how they affect you. Then decide, are they a stressor that you can do something about, or stressors that you cannot control? Once you have that answer you are on your way to controlling or eliminating the stressors in your life, and possibly you are on your way to controlling or even eliminating some of the flares you experience.

Note: The following should be taken as examples only and not construed as fact. Most things in our life can be altered, changes, or eliminated. Understand that everyone’s life is different so no representation of fact with regards to any individual’s particular situation.

Examples of stressors you cannot control are your children, work (unless you are willing to quit or change jobs), spouses (though you can talk to them and hope they can lower the stress level they add to your life), medical problems (for the most part), medications (though you may need to change from one medication to another with less side effects), money and bills (though in many cases we can keep from creating new bills), legal issues, and the daily tasks we must all do.

Examples of stressors you can do something about include your extended family, acquaintances, casual friends, tasks you take on for others (you can be your own worst enemy), shopping (it has to be done, but there are many ways to change how it is done), being perfect or believing you have to be, exercise (don’t eliminate it, but if it causes stress change your form of exercise), holidays (you can’t eliminate them, but you can change how you approach and celebrate them), meals, house work, travel, most relationships, food, schedules to some extent, and all the non-essentials in your life.

Some of the stressors that are stated as being under your control, may cause you to stop and say “no way”. I can’t control my family. I can’t control friends. I can’t, I can’t, I can’t. First look at your approach. If you think you can’t you have immediately doomed yourself and the outcome will be exactly what you expect. You can and should explain to the people in your life what your needs are with regards to your illness and well being. If they don’t understand, or refuse to comply with what you need, then it is up to you to take control of the situation. Set your boundaries and then do what you have to do to enforce them. This may sound strange, or even a bit strong, but you have to be the one who is control of your life, your illness, and the stressors you can control.

Making the changes necessary to control, change, or eliminate the stressors in your life that you have control over is never an easy process. But, the results are certainly worth the effort you put in to it.

Defining My Life With Chronic Illness

For anyone who lives with chronic illness or has a family member or friend who lives with chronic illness, the days can certainly be a challenge. No one knows if a day will be good or bad, only that the days will be. We hear that lupus is a “chronic illness”. Most of us accept this at face value. I would like you stop for just a short time and ask yourself do you really understand what “chronic illness means”? Or do you simply accept the diagnosis of lupus, hear the words “chronic illness” and go about trying to control the symptoms?

I think if each person who has to live with lupus, or any other chronic illness actually took a little bit of time to understand those two words, they would gain a lot of insight in to their lives, the changes they might need to make to live successfully with a “chronic illness” and even gain some sort of control over, or peace in, living this new way of life.

Here are just a few ways to define chronic illness. As you read them, note the words in bold text. They are there to provide guidance and understanding of what patients of “chronic illness” live with everyday.
A chronic disease is:

• A disease that is long-lasting or recurrent
• An illness that persists for a long period of time
• A condition that is long-term or permanent, as opposed to acute, and which needs to be managed on a long-term basis
• A condition that lasts a year or longer, limits activity, and may require ongoing care
• An injury, illness or condition, which does not require hospitalization, which may be expected to be of long duration without any reasonably predictable date of termination
, and which may be marked by recurrences requiring continuous or periodic care as necessary
• Long-term or permanent illness that often results in some type of disability and which may require a person to seek help with various activities
• A persistent or recurring illness or set of symptoms

These words, if read in the wrong frame of mind can be interpreted as extremely depressing. They are not meant to be. They are meant to be realistic, motivating, and encouraging. How is that possible?
First, when you read these words you will see that most “chronic illnesses” have no end in sight. How depressing is that? If would be if that is all you focus on. But change your focus for just a minute and see that this is your new life. No one’s life is ever constant without changes. Those of us who live with “chronic illness” simply have changes that manifest themselves medically. We need to find a way to live life, just as you have lived before.

Long, long, long. You will see those words all over the above definitions. Managed on a long term basis; long-lasting. The one place it doesn’t say long is when it comes to your life. Most lupus patients live a long, though changed life. With early diagnosis and proper care long can be a good word in your life.

Recurring illness or set of symptoms? Well, I for one am glad that the symptoms are recurring and not forever changing. I have pain in my back, and I know how to deal with it. I have severe headaches and have just the medicine to take for it. I have nausea and carry Zofran to combat that symptom. I have chronic pain but have learned how much to deal with it and when to seek pharmaceutical help. I live with fatigue and know when enough is enough and that it is time to rest. I know that I cannot go out in to the sun or I will be in bed for the next few days. All of these are my recurring symptoms. Now, throw in something new, a non-recurring symptom and I am lost, confused, panicked and will probably race to the doctor immediately or even worse, call the ambulance.

Seeking help? That is one of the most difficult things for most of us to do, especially if we don’t have someone who lives with us who can help. It is natural not to want to be a burden on anyone. But reverse the situation. We would be there to help our friends and family if they needed us. Why should we be any different? Very few of us are in situations where there is absolutely no one to help. Help is there from friends, family, communities, churches, and many other organizations. Everyone needs help at some time in their life. You may think you know people who appear strong, independent and never need help. You are wrong. It is human nature to need help for different things at different times in our lives. Just because you don’t see it, or are not aware of it does not mean it doesn’t happen. Why should you be different?

The worst part of the definitions above, for me, is the word limit. I hate limits unless they are self-imposed. Add activity to limits and it gets even worse. Especially when the limits may not be known until a few hours before some scheduled activity. But even that can be dealt with. We can all find ways to enjoy most of the activities we like, and still stay within the limits our disease requires to stay healthy. For instance, if there is some family event, I try always to go to the event and not bring the event to me. Then if I tire early I can always lay down there or head to my house. I never go the first hour or two, but wait until most of the family will be there at the same time. And I have an idea ahead of time about how long I can stay. If I think I can stay two hours and make it that long, then I see the event as a success. And maybe I can even stay longer. I haven’t set myself up for disappointment and I haven’t lost out on an important part of life. By doing these three things I can still enjoy time with family. With a little thought and understanding of your “chronic illness” you will be able to determine what works best for you with regards to most events.

For other events, especially evening events, I may rest the day of the event, limiting my activities and energy expenditure. This way, I am more likely to be able to go to the event and enjoy my time there. I also plan for a slow day the day after the event. I’ve made these changes a part of my life, so the planning for me comes naturally now. I’m not even aware I am doing it.

Do I let my “chronic illness” define my life? No. Do I allow my “chronic illness” to govern my life? Maybe to some extent. But I like to view it as a natural change that has happened in my life. New things to adapt to. A maze that I must find a way to get through. An adventure of sorts. Every day I learn more about what I can and cannot do. I learn new ways to make my life meaningful for me. I adapt and change the way I do things so I can still do and enjoy the most important things in my life. I still read. I still write. I still spend time with my grandchildren in the pool. I still go out with friends. I am still me. I have definitions of what “chronic illness” is and I have my definition of what “chronic illness” means to me and how it affects my life.

You can use these definitions to define your life with “chronic illness” or you can use them to free yourself of the constraints of these limited definitions. You define who you are. Through knowledge we direct and build our lives and become the people we are meant to be. I hope you choose your own definition of who you are and the life you will have while living with “chronic illness”.

From The Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network

It’s In Your Hands

Do you have a copy of your medical records? Why not? They belong to you. If you do have a copy, are they complete or simply include the records from only one physician? Do your records include copies of the results of all the laboratory tests you have had done? Copies of the results of all procedures you have had done? Copies of any and all x-rays, CT scans and MRI’s in digital form? Physician notes? Do you have dates, locations and physician names? This information may sound unimportant to you, but when it comes to future treatment with regards to your health, each of these pieces of information could be the critical information that determines the course of your health care.

Recently I had to go out of town for medical treatment. I was told to bring all my medical records with me including x-rays, MRI’s, ct scans, etc., in digital format. I did just that. My medical binder is lovingly referred to as War and Peace. A great name I think, as it is large, assembled by one person, and certainly is the story of a person at war and at peace with her own body.

Ok. Now that you have an understanding of how critical and vital it is that you maintain your own set of health records, you are probably saying, I agree, but where do I begin? The doctors won’t give them to me? I’ve been to so many different physicians, where do I begin? Well, it’s actually much easier than you thought. It just takes some organizing, planning, and effort on your part. But it will be worth every bit of time you put into the process.

When HIPAA (Health Insurance Portability and Accountability Act) was passed in 1996 not only did it ensure the privacy of your medical records it also gave you access to all of your medical information. In short HIPAA says Health Insurers and Providers who are covered entities must comply with your right to:
• Ask to see and get a copy of your health records
• Have corrections added to your health information
• Receive a notice that tells you how your health information may be used and shared
• Decide if you want to give your permission before your health information can be used or shared for certain purposes, such as for marketing
• Get a report on when and why your health information was shared for certain purposes
• If you believe your rights are being denied or your health information isn’t being protected, you can
o File a complaint with your provider or health insurer
o File a complaint with the U.S. Government
You should get to know these important rights, which help you protect your health information. You can ask your provider or health insurer questions about your rights.

Now you know you can get the copies so it’s time to set about gathering all this information that is being stored in files all around town at various doctor’s offices. First make a list of all of your physicians and their telephone numbers and begin calling their offices. The easiest place to begin is with the physician you see the most often. Simply pick up the phone, tell them who you are and that you would like to get a copy of your medical records. They may ask you why, and this may seem like they don’t want to give them to you, but often they are just checking to see if the records are for another physician. In that case, they would normally send them to the new physician free of charge. But if you allow them to send records to the other physicians, you never get your hands on them. Simply tell them that you want to become an equal partner in your health care and as such you need copies of all of your medical records. They may say they charge for copying them for you, and by law they can only charge a nominal fee. It should not be exorbitant. Once you have a copy of these records, then move on the next physician. Continue the process until you have all your records.

Once you have them in hand, organize them in one place, such as a three ring binder, and be sure to take them with you to the hospital, any new physician or anytime you are seeing physicians away from home. Additionally, any time you see one of your regular doctors for normal visits, ask them for copies of all lab results, test results, and physician notes after they are dictated. You may want to take your own notes during the visit and record things such as height, weight, blood pressure, pulse, temperature, and your understanding of what is discussed including any changes in medications.

If you begin this now, you will have your own set of medical records and not have to rely on others for information should the need arise. Remember, physicians go out of business just like all other businesses. If you don’t have your records before they close shop, this information could be lost forever. Additionally, what is in your hands may save you from unnecessary tests, procedures, time and expense.

Once when I had to go to the emergency room due to difficulty breathing, the physicians there heard fluid in my lungs. The immediate reaction was that I must have congestive failure and they wanted to do a heart catherization to confirm this. I opened my personal copy of War and Peace, showed them the latest results of the heart cath done just a few months prior, and was given an inhalation treatment instead of a heart cath. The ER physician said he wished all his patients had their information with them as I did. I was just glad I stopped the invasive procedure and could walk out in a couple hours instead of a couple days.

Your health is more in your hands than you realize. Begin today to take control or your health and your health records.

From the Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network

Overcoming The Fear

A lupus flare can really wreak havoc on a patient’s life. There are physical issues, work issues, family issues, and certainly mental issues. I can remember the first graph someone showed me depicting the flares and remissions that are the “norm” of lupus. It showed these hills with sloping sides and valleys with gentle curves. It made a patient believe that when a flare begins it climbs this slope to the top, stays there for an indeterminate time, and then slides back down to life as it used to be, “normal” you might say. Well, we all know down-hill slides don’t take a lot of effort. Just sit and wait until we are back on level ground. At least that’s what the graph depicts, and those not living with lupus might believe that. Lupus patients never would.

The climb to the top of a flare is exhausting. Not knowing how long the flare will last or how bad it will be takes a mental toll. As bad as all of this can be, recovery, or the return to “normal” is even more difficult. After a flare has reached its height, all a patient wants is to get back to their old life. Back to “normal”. But that is easier said than done.

Recovery involves a lot of physical effort. Dr’s visits are a big part. So are prescriptions medications and their side effects. Learning to trust you body and the things that are happening can be a real stumbling block. Just gaining enough strength and trust in yourself to get out of bed after a few days of not being able to do so, can be exhausting at best. After my most recent flare, and spending 6 days in bed, I finally gained enough determination to get up and lay on the couch. I was afraid not to. I thought if I stayed in bed one day longer I might die there. But the energy needed, both mental and physical, was almost more than I could manage.

Physical or occupational therapy may be a part of the recovery. Weaning yourself off steroids and trying to lose the weight gained while on it takes a long time. If the patient was an active person, just trying to get back in to some form of walking each day is a challenge. Returning to work and knowing that you won’t need a nap in the middle of the day takes a toll. But of all the things it takes to recover I, personally, have found that the mental block placed in my mind is the worst.
I forced myself out of bed after 6 days. I set goals for my work at week 1, week 2, week 3, and 1 month. I made to do lists of the projects I wanted to accomplish at work, and even some at home. It has been almost 2 months since the most recent flare and I feel as if I have a reign on me holding me back, and the reign is of my own doing, existing only in my mind.

I won’t let myself do the things I can physically do. I am afraid of having another flare. I won’t let myself work any longer than this arbitrary hour I have set in my mind. I am afraid of getting sick again. I won’t let myself write like I used to, making fun of my life and the things I do. I don’t do those things that make good stories because I am afraid of overdoing and being back in bad one more time. I do only the minimum work around my house, out of fear of being exhausted again. My house suffers. My plants suffer. My family suffers. My friends suffer. But I suffer the most by living in fear.
I’m sure I am not the only patient who experiences this “fear block”. It’s normal. It is the way we try to protect ourselves from another flare. From being sick. From losing everything we have regained in our efforts to have our life back the way it was.

The sad thing is, many of us will never have our lives back exactly as they were. Every flare changes us. We learn more. We begin to recognize what triggers our flares. We make modifications to our lives to accommodate the changes. Each day we try to feel a little more like we did “before” the flare but the invisible reign is always there holding us back. Some days we make progress. Some days it’s a toss-up between gaining and losing ground.

What you can’t see or feel is that with each day there is a small nick made in the reign of fear we live with. Just by living we are loosening the reign, cutting it from our life. Day by day its grip becomes less confining. Imperceptible, maybe, but still, it is happening. We take those extra steps. Work an extra 5 minutes. Cook dinner instead of ordering in, even if it is frozen pizza cooked in the oven. Watered the plants, all at the same time, instead of one today and one tomorrow. Folded the laundry the same day it was washed instead of letting it sit in the baskets for a day or two. Noticed the dust, even if you don’t do anything about it. Read a book with your children, grandchildren, or just for yourself. Wrote a blog to help other lupus patients deal with what you deal with on a daily basis.

Slowly, daily, the fear will subside. The reigns will loosen themselves. And soon you will be back to “your new normal.”

From the Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network