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: Attitudes

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

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.

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

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.

Remaining Positive While Living With Chronic Illness

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