After The Diagnosis http://thelupussupportnetwork.org/blog Just another WordPress weblog Mon, 14 Nov 2011 13:33:21 +0000 http://wordpress.org/?v=2.6.2 en Healthy Foods Enhance Life for Those with Chronic Illness http://thelupussupportnetwork.org/blog/2011/11/14/healthy-foods-enhance-life-for-those-with-chronic-illness/ http://thelupussupportnetwork.org/blog/2011/11/14/healthy-foods-enhance-life-for-those-with-chronic-illness/#comments Mon, 14 Nov 2011 13:33:21 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=43 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.

]]> http://thelupussupportnetwork.org/blog/2011/11/14/healthy-foods-enhance-life-for-those-with-chronic-illness/feed/ Different Words = Different Treatment http://thelupussupportnetwork.org/blog/2009/09/22/different-words-different-treatment/ http://thelupussupportnetwork.org/blog/2009/09/22/different-words-different-treatment/#comments Tue, 22 Sep 2009 16:59:17 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=41 I often hear people say “the journey continues” with reference to their life with lupus. On good days, I smile and think, ‘well, they are making progress’. On bad days, I find myself thinking, ‘well duh, is there any other option?’ Same statement, interpreted by the same person with two totally different takes on the same words. The words weren’t different. The person hearing the words was the same person. The only difference was the frame of mind the person was in when hearing those words. In this case I am referring to me, the person who heard these same words uttered at different times in my life. Most of the time I have a positive interpretation of the words and think the one who spoke them must be doing well. On rare occasions though, like today, when it takes all of my energy to keep going when the pain is unstoppable and courses through my entire body as if waging war against an unknown enemy, obliterating everything in its path, well on days like today, I respond with the “duh” comment.

What could make a simple statement mean two entirely different things to the same person? If it could happen when I hear these words, how often are other things we say as lupus patients misinterpreted? And if a misinterpretation occurs, is it likely to harm us or our medical treatment and care? It appears to me that so much depends not on the words we choose to speak, or the person we speak them to, but rather the frame of minds that both parties of the conversation are in at that particular moment in time.

We all have good days and bad days. On the good days, we are calmer and more likely to hear things positively. On bad days, the opposite is likely true. It may be that we, as the speakers, are vulnerable to the exact same thing. Though we use the same words, our tone of voice is more positive when we are feeling well, and more than likely it is more negative when we are experiencing pain or some other physical aspect of our disease.

How then, can we communicate properly, be understood precisely, and treated correctly, when so much depends on things out of our control? As with most conversations that are vital to our health, well being, and relationships, it is best to keep the negative tones out. Leave them out of your voice. Leave them out of your words. Leave them out of your emotions. I realize this may be very difficult to do, but a lot can depend on how you display your emotions. Take one simple statement and imagine how it could be interpreted depending on the tone the person uses when they speak the words – “I’m doing okay.” Wow! That could be interpreted as defeatist. It can also be interpreted as realistic. And it could just as easily be interpreted as positive, if the tone of voice is positive when the words are spoken.

We as the patients have to learn as many ways as possible to explain what we want the other person to understand. Some days one set of words may work while on another day the same thing would require a completely different set of words. It is our responsibility, us the patient, to ensure that we are communicating in the best way we know how. Try to speak – emotion free. Choose the best words you can to relay your thoughts. Draw pictures if necessary, that sounds strange, but when dealing with medical issues, it often helps. When all else fails, ask the person you are speaking with if they understand what you said. In most cases they will, and if not they will ask you for clarification. With practice, this gets easier. Remember always though, that even when you are doing the best you can to communicate, part of the understanding lies with the person you are speaking to and their understanding, just as your communication, can be influenced by emotions, stress, and communication skills.

]]> http://thelupussupportnetwork.org/blog/2009/09/22/different-words-different-treatment/feed/ Handling The Stressors In Your Life http://thelupussupportnetwork.org/blog/2009/09/10/handling-the-stressors-in-your-life/ http://thelupussupportnetwork.org/blog/2009/09/10/handling-the-stressors-in-your-life/#comments Thu, 10 Sep 2009 17:14:42 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=38 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.

]]> http://thelupussupportnetwork.org/blog/2009/09/10/handling-the-stressors-in-your-life/feed/ What’s In Your Medical Records? http://thelupussupportnetwork.org/blog/2009/08/23/whats-in-your-medical-records/ http://thelupussupportnetwork.org/blog/2009/08/23/whats-in-your-medical-records/#comments Sun, 23 Aug 2009 14:27:56 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=36 Do you know what’s in your medical records? Knowing what is in your records can play a big part in not only your future treatment but can also give you the information you need to ask the right questions of your doctor, which believe it or not, can lead to critical testing and proper treatment for many conditions. Every patient has a right to know what is in their medical records and dispute it if necessary.

In the past few months I have heard from many patients who have horror stories to tell about getting copies of their medical records and being shocked to read what their doctors put in their files. Remember, your medical records are much like your credit history and follow you from now until who knows when. All future physicians will seek copies of your current medical records, so you should guard them and ensure accuracy with vigilance.

Perhaps it is the nature of the lupus and its difficulty in diagnosing that leads to the erroneous information that is being placed in files. Or perhaps it is put there by physicians who are not specialists in the diagnosis and treatment of lupus who put incorrect information in a patients file. It doesn’t really matter why, it only matters that it is there and it can harm you and your future treatment for not only lupus, but for many other illnesses.

One particular patient was beyond shock when she read in her medical records that she had been diagnosed with a psychiatric disorder. This was only discovered when she finally read her records and the physician notes. It was the notes that disclosed this fact. She took immediate action to correct this unsubstantiated diagnosis. She had a letter written by her current rheumatologist and had it sent to be included in the records of the physician who put the “psychiatric” note in her file.

Another patient, who had not yet been given a definitive diagnosis, requested a copy of her medical records because her long time physician was closing his practice. It was only then that she found notes stating that her rheumatologist wrote a letter to her internist stating things that were totally wrong and that he had run tests that had never been done. This particular patient had been treated by the rheumatologist for over 10 years, yet the rheumatologist stated in his letter that the patient had only spoke of certain symptoms in the past 2 years. None of these errors would have been noted or corrected if the patient had not reviewed her medical records.

The last patient I will speak about was gathering and reviewing her records before she was sent to a tertiary treatment center. Among the records were 3 EKG’s all from the same date. On the top of the EKG’s it was noted that the patient had had a previous infarct, which means a previous heart attack. The patient was not aware of this so took copies of the EKG’s to her physician and asked for an explanation. Her current physician did another EKG to verify the results, which were once again abnormal. Further tests were ordered. The results were conclusive that the patient has limited blood flow to her heart and was scheduled for additional testing and treatment. In this particular case it is unknown if the abnormal EKG results would have been acted upon without the urging of the patient. In essence, this patient may have saved her own life. Limited blood flow to the heart will eventually lead to a heart attack which the patient may or may not have survived. They say that a little knowledge is a dangerous thing. In this case, limited knowledge and the desire to know more along with the willingness to ask questions really benefitted the patient.

These are just 3 of the many cases involving medical records and the importance of knowing what is in them. They are your records. It is your health. You need to stay aware of what is in them, and be sure to correct errors, ask questions, and know that ultimately you are the one who will be affected by what is written and stored in your medical file.
 
From the Life and Mind of
Wanda M. Argersinger, Executive Director
The Lupus Support Network
All Rights Reserved 2009
www.thelupussupportnetwork.org

]]> http://thelupussupportnetwork.org/blog/2009/08/23/whats-in-your-medical-records/feed/ Defining My Life With Chronic Illness http://thelupussupportnetwork.org/blog/2009/08/10/defining-my-life-with-chronic-illness/ http://thelupussupportnetwork.org/blog/2009/08/10/defining-my-life-with-chronic-illness/#comments Mon, 10 Aug 2009 18:07:27 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=22 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

]]> http://thelupussupportnetwork.org/blog/2009/08/10/defining-my-life-with-chronic-illness/feed/ It’s In Your Hands http://thelupussupportnetwork.org/blog/2009/08/03/its-in-your-hands/ http://thelupussupportnetwork.org/blog/2009/08/03/its-in-your-hands/#comments Mon, 03 Aug 2009 20:40:17 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=17 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

]]> http://thelupussupportnetwork.org/blog/2009/08/03/its-in-your-hands/feed/ Overcoming The Fear http://thelupussupportnetwork.org/blog/2009/07/27/overcoming-the-fear/ http://thelupussupportnetwork.org/blog/2009/07/27/overcoming-the-fear/#comments Mon, 27 Jul 2009 17:01:06 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=15 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

]]> http://thelupussupportnetwork.org/blog/2009/07/27/overcoming-the-fear/feed/ Remaining Positive While Living With Chronic Illness http://thelupussupportnetwork.org/blog/2009/07/20/remaining-positive-while-living-with-chronic-illness/ http://thelupussupportnetwork.org/blog/2009/07/20/remaining-positive-while-living-with-chronic-illness/#comments Mon, 20 Jul 2009 19:15:21 +0000 Administrator http://thelupussupportnetwork.org/blog/?p=5 In my fight against the chronic illness I live with everyday I have quite an arsenal of tools. I have a great team of physicians who try to take care of my health. I have pharmacists who do their best to make sure I get the medications I need and none that I am allergic to. I have friends and family who care about me and are always there to lend support should I need it. I have a belief in a higher power who I know has plans for me. I have hope for the future. And I have the belief that everything will be ok.

No, I am not a Pollyanna. I am a realist with an optimistic outlook. I am a person who believes that everything happens for a reason. I am a person who asks questions. I am a person who investigates. I am a person who doesn’t always believe without hard facts. I am a person who looks for alternatives. I am a person who will not accept the easy answer. I am a person who will get a second and third opinion before I accept a pat answer of “this is the only treatment available.” I am a person with a positive attitude.

Don’t get me wrong. I battle depression like the majority of people who live with chronic illness. I have been so sick at times that I didn’t care what the outcome was. That doesn’t mean that I ever gave up hope, it’s just that I was accepting of whatever the future would bring. That may sound contradictory to “having a positive attitude”, but it’s really not. To me, being positive doesn’t mean being Pollyanna, looking forever through rose colored glasses, or failing to see reality. To me, being positive, means facing whatever is happening in your life with an attitude of “whatever this is I can get through it.”

Everyone experiences bad things in their life. Everyone experiences illness from time to time. The key to having a positive attitude is knowing what is happening. Having all the information available about whatever the current situation is. Believing that with help you can deal with the day to day occurrences. Not giving in to the “poor pitiful me” syndrome. Realizing that whatever situation you find yourself in, there are always those suffering more or having less. Having a good support system of physicians, friends, family and others who are going through or have gone through similar circumstances.

A positive attitude may not change your circumstances, heal your disease, bring you more wealth, or even stop the inevitable disease process. What a positive attitude does is allow you to deal with all of these things. With a positive attitude, pain hurts less, pity doesn’t visit as often, depression is something you can live with, change is viewed as a possibility, and hope is always a part of your life.
I just returned from The Mayo Clinic in Jacksonville, FL. So many people had a hope that I would return with answers to what was happening with me. While I did get some answers, I didn’t get the ah-ha answer that my family and friends wanted. When asked by them if I was disappointed, I said,” no, not at all. I went there without expectations.” That is my positive attitude. I do what I can. Accept the fact that lupus is a mysterious disease and answers aren’t always possible. And I live my life knowing that my life continues, with or without the ah-ha moment so many hope for.

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

]]> http://thelupussupportnetwork.org/blog/2009/07/20/remaining-positive-while-living-with-chronic-illness/feed/ Hello world! http://thelupussupportnetwork.org/blog/2009/07/20/hello-world/ http://thelupussupportnetwork.org/blog/2009/07/20/hello-world/#comments Mon, 20 Jul 2009 12:10:53 +0000 Administrator Welcome to WordPress. This is your first post. Edit or delete it, then start blogging!

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