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 »

 

Acceptance

Does it seem strange to have ‘acceptance’ as the emotion for this blog? In a way it does for me, but then again, don’t we as lupus patients get put into a lot of situations, places, and circumstances where we have to decide to accept or not? I think, we more than a lot of people, have too many things we have to learn to accept. Or not~

First we have to accept our diagnosis. That’s not really an easy thing to do. It means there will be many changes, and we have to accept them too. Accepting one, the diagnosis, means accepting all the changes that come with it.

With the changes we have to accept the fact that we will now be taking medications that we never took before, and not all of them are nice medications. We also have to accept that physicians, in ever ‘ologist’ area, will not be a part of our lives.

We have to accept the changes the disease brings. No more sun. Fatigue everyday. Pain as a companion. Cognitive dysfunction. And so many other things.

It doesn’t help to deny these things. They don’t change or go away because we won’t recognize them. To be honest, the sooner we accept them, the sooner we will learn how to live with them, and the easier our life will become.

Acceptance can ease the feelings that gnaw at us. The ones inside that work to keep us confused. What if the diagnosis is wrong? What if I don’t need these medications? What if I go in the sun for a little while? What if I feel good and don’t want to go to the doctor? What if….

You can decide to ignore these things. You can refuse to accept what you have been told. Those are your options and only you can make that decision. I’ve seen people who fight against acceptance. In the case of lupus, they rarely win. The more they fight, the more miserable they become. The more they fight and deny, the more the disease become active. The more active the disease, the worse their life is.

We are taught to fight when we have a disease. Lupus is no different, but fighting the diagnosis, the need for meds and physicians and test is futile. They will become part of your life and something to be accepted.

Accepting all of this does not mean you are defeated. In this case it means you are ready to fight; ready to have a better life with lupus; ready to move forward into a new life.

© 2013 Wanda M. Argersinger and The Lupus Support Network

Frustration

What do you do when you go to see a medical practitioner and nothing goes as you expected it to? Do you become irate? Do you express your concerns to whomever is in the room with you be it nurse, PA, ARNP, Elmo? Do you scream, and holler, and make threats? Do you quietly make notes? Do you make things better or worse for yourself? There’s a lot to think about in a short amount of time, but what you do could have serious consequences for you and your future health care.

I caution you, no matter how much you want to, DO NOT LOSE YOUR COOL. Most likely whomever you are dealing with is not at fault. For instance, if you expected to see your doctor, arrive and find out that you will be seeing another practitioner, it’s not the end of the world. It may be a waste of time. It may be frustrating. It may inconvenient. It may even anger you. It is not a life and death situation. Try to remember that.

Next, decide if you will remain for the appointment, or if you will need to reschedule. You may need to think about this because some practitioners will charge you for the missed or changed appointment. You have your own reasons for your choice, just be sure you think about the decision.

If you decide to leave, make sure that the people at the front desk (aka – those in charge of the physician’s world) are treated with respect, but also that they know how you feel. Then reschedule and have them assure you that you will see who you want and expect to see.

If you decide to stay, remember, it is your decision and everyone you come in contact with at the office is not your enemy. Treat them with respect but also make sure that whatever you are there for is handled. Just because you are seeing someone you didn’t plan on does not mean that you should not get the treatment you expected. If you need a refill of medication, you should receive it. If you need an answer from your physician, make sure whomever you see speaks to your physician while you are there and that you get your answer. Don’t take the – “I’ll speak to him and call you later” answer. Your time is important too.

If you show up for your appointment only to be told that your appointment is not for that day or that time, hopefully you have a copy of the appointment card they gave you. If you do, show it to them. If they made a mistake, they should accommodate you. If you made the mistake, laugh it off. We’ve all done that, once or fifteen times.

Remember that you have the options here. If you don’t like the options offered, simply ask for an appointment at a different time. It’s not often that the office personnel will argue with you, but if they do, remain calm and firm. It’s not necessary to make demands, simply tell them what you will and will not do, then get them to accommodate.

I recently had an appointment to have a procedure done by my physician. When I arrived I was told the procedure would be done by another physician. I had experienced the same procedure by this other physician and was unwilling to do it again. I told the office personnel this. They insisted that they had told me who I would be seeing when I made the appointment. I told them I had not known and would never have consented to it. I also told them that I would not be having the procedure done by this physician. They told me that my doctor could not see me that day. I told them that was fine, but schedule me when he could. I was not happy. I had been inconvenienced. I was in pain and would not get relief that day. I wanted to commit homicide upon someone, anyone, perhaps the first person I see. But I handled it and saw my physician two weeks later. At that time I told him what had happened and left it in his hands. Who better to resolve the issue than the man in charge?

It’s not easy to remain calm when you are living with a chronic condition and are
inconvenienced. But it’s better to let them see your good side, than your bad side. Remember, they control the doctor’s world and you need and want to be a part of that world.

© 2013 Wanda M. Argersinger & The Lupus Support Network
www.thelupussupportnetwork.org

Are You Satisfied?

Satisfaction looks different to everyone!

Satisfaction looks different to everyone!

Is there a way, when you live with lupus, to every feel that things are right? That perhaps you did something to feel good about? Do you ever feel satisfied with the way your life currently goes or are you satisfied with your medical treatment or health in general? I’ve wondered the same thing, but feeling satisfied is possible.

Satisfied means feeling gratified or happy. If you live your life never feeling satisfied, that’s a sad fact. Even living with a chronic illness such as lupus, we can feel satisfaction. There are ways to be happy.

We may never be completely satisfied with our health, the changes we have had to make in our lives, the lack of treatment available for lupus, the color of our hair, or even the way our skin feels. If we look only at things like this, we may never feel satisfied with life. We may never enjoy happiness.
Think about all the times you get to spend with your family, or friends, or maybe by yourself. These are good times; times that make us feel good. What about reading a good book and really enjoying a story? If you have a day that you get out of bed, enjoy a warm shower, dry your hair, and look in the mirror and like what you see. How about the simply joy of crawling in to a bed with fresh sheets that were dried outside. These are small things that can make you feel satisfied.

For me, if I can change the linen on the bed I feel satisfied. If I can prepare a meal for my family, that makes me happy. When my grandchildren come to see me and I am able to bend down and get a kiss from them, you can see the happiness on my face.

This past week my grandson, who is visiting from North Carolina, was taking surfing lessons. That means water and sunshine. I wanted so much to see him surf so I made arrangements to be there for the last couple of hours on his last day. I did take precautions such as sunscreen, an umbrella and plenty of water. But I was there. I got to see him. I took photos. I loved every minute and I feel satisfied that I got to do what I wanted to do. I was there for him. I saw him surf. I got a big hug from him when he came out of the water. I haven’t felt that satisfied in a long time.

Now I am sitting at my computer writing about feeling satisfied. When I post this for all to read, I will again feel satisfied. When I see the stats for the blog climb, I will feel another level of satisfaction. If my post helps people, again I will feel satisfaction. If the readers respond and let me know how my words help them or touch their lives, that is the ultimate satisfaction for this blog.

May you all enjoy feeling satisfied in your lives.

2nd In The Series – DETERMINATION

I find it difficult to concentrate enough this week to write about an emotion for the blog. The blog is supposed to examine emotions, one emotion at a time. I could discuss sadness, as I feel that very deeply this week after losing a dear friend to lupus last week. I could discuss anger, but that’s been done. I won’t discuss fear. That is one emotion I rarely experience with regards to lupus. That brings me to the fighter in me. What emotion would you associate with a fighter? The one I think of is determined.

You may not think that determination is an emotion, but stop for a minute and think. If you have ever been so determined to do something, or complete something, or change something, did you feel it? Did this feeling give you drive, and courage, and strength you didn’t know you had? That’s what determination can do.

Determination

Determination

I’ve had lupus friends who were so determined to do certain things, they made them happen. Things that could never happen without determination. I can remember one terrible flare that put in bed for far longer than I could take. I was determined to get out of bed and get my life back. I began by simply getting out of my bed and moving to the couch in the living room. I did that for a couple days then began doing the same thing but sitting up for a couple hours. Day by day I increased the time I was sitting. Eventually I returned to the office, 2 hours a day at first. I did that for a week then added 1 more hour each week until I was back to working my normal hours. Some might say I would have gotten better anyway. Perhaps. But I think the determination I have made it happen sooner for me, and that’s what I needed. I needed to get better and feel like I still have some control of my life. Determination gave that back to me.

Isn’t it determination that allows a child to continually fall and yet eventually learn how to ride a bike? Isn’t it determination that allows all of us to learn how to walk? Isn’t it determination that gives us what we need to learn a new language, or get the grades we want in school, or even tolerate some of the treatments we face? Isn’t it determination that makes us change from a familiar doctor to one who will give us the care we deserve? Isn’t it determination when we look at a physician and tell them no, we will not consent to that treatment?

I wonder where we would be without determination? I wonder where I would be without it? I know that after this past week and the loss of my friend I am more determined to make a difference with regards to lupus and do something to honor my friend. Do everything I can to fight this disease, and not just for me, but for everyone who lives with it.

I hope that after reading this blog, you have a greater understanding of what determination is, and what it can do in your life. I also hope you find the determination you need to do whatever it is you want to do. I also hope a few of you have found the determination to join me in this fight for only the determination of many will end this disease and the death it brings.

© 2013 by Wanda M. Argersinger and The Lupus Support Network
All Rights Reserved

New Blog Series on Emotions – Anger

Welcome to the Lupus Support Network Blog.

If this is your first time here, or your first time here in a while, then you’ve come at a good time. We are starting a series on emotions. Every couple weeks, or more often if I can get to it, there will be a blog posted about a particular emotion and how and when it might affect lupus patients, or other patients with chronic illness.

Remember, I am not a certified anything. Well, actually, I am certified in teaching Underwater Basket Weaving, but that’s another story for another time. So, hang in, come back often, and give us feedback if you’d like to. If you don’t want your feedback published, be sure to let us know.
The emotion for this blog is ANGER.

If you’re a lupus patient then you have experienced this more than once while dealing with your disease. Think about it an follow me.

How about when you didn’t know what was wrong with you and it didn’t seem the doctors would ever know? How did you feel then? I suspect you were ANGRY.

How about when you finally received your diagnosis? Can you tell me you were happy? Or were you ANGRY because it’s unfair?

What about when you can’t do what you used to do or do what you want to do? Do you feel ANGRY then?

How do you feel when something new is wrong and the doctors want to blame it on your lupus but you feel it is probably something else? Do you feel ANGRY then?

If you didn’t feel ANGRY in any of these instances, I suspect you have felt anger or some other thing, obstacle, diagnosis, lack of diagnosis, happening, instance, or moment since you were diagnoses.

Don’t feel bad about having this emotion. It’s normal. We all feel many different emotions, even those living with lupus. We have a right to our feelings, but we need to understand why we feel the way we do, then work toward feeling our normal, whatever that is.

ANGER is an appropriate emotion at certain times, but it is not one we should experience all the time; one we maintain; or one we cultivate. It is one to be acknowledged, experienced, and then put away.

Written by Wanda M. Argersinger, Executive Director – The Lupus Support Network
© 2013, Wanda M. Argersinger and The Lupus Support Network
www.thelupussupportnetwork.org

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.

Different Words = Different Treatment

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.

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.

What’s In Your Medical Records?

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

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