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
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 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
And yes, it requires all those words to be one emotion. I’m fairly certain all of us have been DITD at one time or another. Many of these DITD episodes happen this time of year. I suffer from SAD (seasonal affective disorder) which is classified as mild because I live in the South. Heaven forbid I should live in Alaska. I’m not sure their measurement scale would go high enough to register the opposite end of mild, at least where I’m concerned.
There are many reasons a person may feel down in the dumps. Loneliness. Additional medical issues. Being a recluse. Not feeling worthy. Generally feeling ‘not quite right’. The list could go on and on. I don’t want to focus on the reasons for feeling DITD, but rather on the why’s and the how to feel better.
Did you know that the way you think and view things in general can contribute to DITD? If you are a person prone to negative thinking you are more prone to DITD and depression. Negative thinking leads a person to believe that the world is not a happy place and they are rarely happy or find anything to be happy about.
Stress is another factor in DITD. Some people thrive on stress, and yes, stress can be a good thing. Whether it’s good or bad for you is determine on how you view it and how you deal with it. I know that I accomplish more when I have an overflowing To Do List, but at the same time, let something be wrong with a member of my family or someone I care deeply about, and that stress makes me almost non-functional.
Brain chemistry can lead a person to feeling DITD, but most often if brain chemistry is involved it is most often classified as depression and needs to be medically treated. DITD does not require medical treatment unless it is prolonged.
If you are feeling DITD, how do you move past it? That depends on who you are. One sure fire way, if you can manage it, is to get out and exercise. It has proven time and time again that exercise helps increase the ‘happy hormone’ serotonin. The more serotonin that is released the better you are going to feel. The hard part is taking the first step in exercising. Most people can walk, but if you can’t do that there are tons of chair exercises that you can do. The key is to just exercise in whatever way you can.
Other things that can help are reading. If you are a person who enjoys books, reading can help you escape your problems and get away in to another world.
Help someone else. One of the easiest ways for me to feel happy is by helping someone less fortunate than me. Help a lupus patient. Sometimes all it takes is listening. How many times have you, as a lupus patient, just needed someone to listen? Whether you validate what they are saying, or offer advice, or tell them you have been there, giving help to another does something for your heart, makes you feel that you have a purpose, and validates who you are and what you have been through.
Move. That means, get off the couch, out of the bed, and do something. Do anything. Wash the dishes. Call a friend. Write an e-mail. Do anything that keeps you off the couch, out of the bed, or wherever you seem to land when you are DITD. If I am DITD for too long, dishes and laundry tend to pile up. If I can get the dishes washed, or a load of laundry done, for some reason I begin to feel better.
The BIGGEST thing of all if you are DITD, avoid negativity and negative people. This may mean turning off the news, avoiding people who bring you down, stay away from Cousin Mae who is always right and lets you know that fact. Other’s negativity is probably one of the worst influences on a person DITD, and if you are DITD you don’t have your best ‘dealing with’ skills readily at hand. Where normally you might call a person on their negative statements, when we are DITD, we are more likely to take their words as the truth. What has changed in the picture is how we are feeling at the time.
If you think you may forget all of this, make notes on what triggers you being DITD. Make coping notes. Be prepared. Most of all, realize that everyone is DITD at some time in their life, and that this too shall pass. If it doesn’t, you are probably suffering from depression and need medical help.
© 2014 – Wanda M. Argersinger and The Lupus Support Network
As always, we love feedback on the blogs. Are they beneficial? Do you enjoy this series? Let us know.
How many of us can say we have never experienced the emotion of being weary? How many of can say you are too familiar with this emotion? I suspect we have all been weary at one time or another. I suspect we have also been weary for different reasons. I’ve been weary from all the doctor’s visits. I’ve been weary of being sick in bed for more than three days. I’ve been weary from thinking about all the things I have and need to do knowing I don’t have enough energy to do them. I’ve been weary just thinking that there is no end or solution in sight for me. I’ve been weary of trying too hard and seemingly getting nowhere for all my efforts. I’ve been weary from giving all I have when it seems no one else gives or cares. I’ve also felt weary for no particular reason.
All of these feelings belong to me. They may be justified in some cases, and in others they are a result of emotions running amok. Whatever the reason, justified or not, for me the feeling is real, with or without a reason, I still feel weary.
To get beyond feeling weary, a person must know why they are feeling that way. I know I often feel weary because of depression. It’s a difficult beast to battle, but if I don’t get the depression under control, I can’t get over feeling weary. If I’m feeling weary because I’m looking for an answer that isn’t coming fast enough, I need to look at why and then change things such as my doctor, or have a very frank discussion with them and let them know how I feel. Perhaps there are reasons I don’t know about and this discussion will allow me to gain insight. If I’m feeling weary because I feel unappreciated, I need to find my voice and let those involved know. It won’t change unless I help them understand. Whatever the reason for a person feeling weary, they have to be the one to initiate the change in their life.
I remember my Grandmother saying she felt weary. At the time I thought she meant she was just tired. I understand now it was so much more than that. My Grandfather’s health was precarious and this put much more responsibility on my Grandmother. I’m sure she was weary of that at times.
I expect first responders often feel weary. Surely those who responded to the 9-11 tragedy felt weary. I am sure our soldiers overseas feel weary and want nothing more than to come home and see their families. I’m certain that those fighting terminal illnesses feel weary and often want to give up. I, too, have known weariness as I’m sure most of you have. We feel it at different levels, at different times, and for different reasons. Being weary is beyond being tired, it is something felt deep in the bones all the way to the soul.
I feel weary at times and don’t even know why. It’s not a feeling of being tired nor is it a feeling of being depressed. This feeling goes to my core. The best way I can describe it is being tired of everything, feeling overwhelmed, underappreciated, pulled a million different ways, and seeing no way out. I eventually get over it, sometimes by working my way through it and sometimes by just letting a little time go by. I don’t recommend the last option. In most cases, feeling weary has a reason(s) and the reason(s) need to be addressed or they just surface again at a later date.
Feeling weary isn’t a bad thing. We all feel it from time to time. If we know why we feel weary we are able to address it, if it needs addressing. That is an individual choice. I know that in some cases, for me anyway, the weariness won’t go away until I take action in that direction. In other cases, time is what will make the difference. The problem for me is in knowing when to act and when to let time take care of my weariness.
© 2013, Wanda M. Argersinger & The Lupus Support Network
What are you afraid of?
That’s a powerful question to begin a blog with, but without a powerful statement I think many of us might be afraid to address the question of fear. I want you to stop and think, really think, about your fears. I don’t mean the normal fears that we all have. The fears about spiders, snakes, drowning, biting ice cream, or things like that. I mean the deep seated fears that keep us awake at night. The fears we are unwilling to talk about. The fears we don’t want others to see.
Don’t tell me you don’t have any because I don’t believe that. We all have fears, and if you have a chronic illness, you more than likely have additional fears. Fears about your disease. Fears about your treatment. Fears about your life.
Humor me on this next part. Stop and think about your fears now. Think hard and long and then tell yourself if you are afraid your disease will become active, or are you afraid of the times that it isn’t? Strange question? Yes, it is. But the question has validity.
Many of us are simply afraid of change. If we are sick for a long period of time we learn to live that way and moving to a healthier state means change. The same thing happens for someone who is well and then goes into a flare. You move from being comfortable into a new state. A state you aren’t familiar with.
Can we really be afraid of being healthy? Yes. Do we sometimes sabotage our own healing and healthy life out of fear? Some of us do. Think about this. Why would a patient ignore their physician’s instructions? Why would a patient not take medicine that will help them? Why would a patient not go to physical therapy when their physician believes it will help them? Why do all of us not eat healthier?
I have lived with pain everyday for so many years that on the rare occasion that I wake up free of pain I find myself wonder what’s wrong. People might read that statement and think I’m crazy. I’m not. It’s just that pain is my normal. We are taught to think about the things that aren’t normal. For me, being without pain is not normal. I can’t say I fear being without the pain, but perhaps I fear what it may mean. Just like I fear anything that may mean a change in my disease state.
You probably have similar feelings but never stopped to think about them or examine them. Are you afraid to tell your doctor all of your symptoms or everything that seems to be a symptom? By doing so are you hurting yourself? Are you afraid to take your medicine because someone told you that you take too much medicine? Are you afraid to try something new even though your current routine isn’t helping? Are you afraid to do things, or even try to do them because you haven’t done them in awhile? Are you afraid to do them even when you feel like you can?
Why are we afraid? Where did this fear come from? And more importantly, how can we conquer the fear? I am not a psychologist, or psychiatrist, or any sort of mental health counselor. I am just one lupus patient trying to help other lupus patients. For me, to conquer the fear I first have to know and admit that it exists. I have to examine where the fear is coming from. I have to search to see if the fear existed before the lupus, or is it a result of the lupus and what I have endured because of this disease. I have to be able to see what is on the other side of the fear if I want to overcome it. Perhaps I need to talk to someone about my fear. This person can be a mental health counselor, a trusted friend, or another lupus patient. Sometimes just speaking the words opens a clear path for moving past the fear. When I have the answer to these questions, then I will take the power away from the fear and it will exist no longer.
From the life and mind of: Wanda M. Argersinger
© 2013 Wanda M. Argersinger, The Lupus Support Network, Inc.
How many of you have never wondered why you are on this earth? That statement reads correctly. How many of you have NEVER wondered? Or questioned your purpose? Wondered each day if you are doing what you are destined to do? Or asked yourself – what is your destiny? What is the legacy you will leave behind? I suspect everyone who is reading this has asked these questions, probably more than once. I also suspect that not many of us have a solid answer and know for a fact that we are doing exactly the thing or things we are supposed to do.
For me, I question this on a daily basis, even when I believe I am doing what I was destined to do. For me, as with many of you, I need and want evidence. I need proof. I need someone or something to stand up and shout – this is it. You are where you are supposed to be. You creating the destiny you are supposed to have.
Rarely there are those rare moments when I know, without a doubt that I am doing exactly what I was put on this earth to do. When those moments happen, I feel fulfilled. I feel happy. I feel so many emotions. Yesterday, I got to have one of those moments. The Lupus Support Network held a lunch and learn seminar with two speakers. Afterward, a young woman in tears came up to me and hugged me and said thank you. She said that before the seminar she felt alone and as if she was going crazy. But now she knew what she was experiencing was part of the lupus and thanked me again for sharing my information with her.
This is why I do what I do. When I know that I have made a difference in someone’s life, I am washed with emotions, and am often near tears. Can there be anything greater in life than touching another person so deeply? For me, the answer is no. For me, these moments allow me the certainty of knowing I am doing what I am supposed to do. I feel fulfilled in my life.
Sure, I do other things in my life. Certainly I enjoy these other things and often get great joy and a feeling of accomplishment. I love when someone reads the humor I write and then they tell me they laughed, or they enjoyed it. I enjoy praise for the work I do, the stories I write. I feel good about myself when I know I have done a good job with some task. But nothing brings the feeling of fulfillment like knowing I am doing that one thing that I can do well and am supposed to do in my life.
Fulfillment is not a feeling many people experience often. It’s not one expected every day. It is a rare emotion. That is part of what makes it a special emotion. When a person feels fulfilled, it means they feel satisfaction or happiness as a result of fully developing their abilities or character.
Does everyone have the ability to feel fulfilled? I believe they do. But each person will feel it for a different reason. Some experience it when helping others; some when making a difference in their community; some from teaching others new things. It seems to me, that the feeling of fulfillment comes not from doing something for ourselves, but in doing or helping some other person or people. If you’re homebound, does that leave you out? No. There are things all of us can do for others. From what I’ve seen and experienced, we get as much joy as the person we are helping, and sometimes we even feel fulfilled.
© 2013 Wanda M. Argersinger and The Lupus Support Network
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
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
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.
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.
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