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How often do we, as lupus patients, stop to appreciate all the wonderful things in our lives?
More often than not we are grumbling about living with a chronic illness; complaining about the lack of funding for research; lack of research that produces results; lack of drugs; lack of physicians; and on and on infinitum.
But not everything is bad.
I get updates about lupus in the news every day and the past month has been enlightening. The last two weeks have been astounding. The number of research projects being conducted with regards to lupus are growing, and the findings have been great.
Many different ways to approach the same subject are underway. Many new doors are opening and the possibilities seem to be endless, but ever so hopeful.
Hearing news like this after suffering so many years of nothing makes me appreciative for all involved.
- I appreciate the researchers and the companies who fund these projects
- I appreciate the patients who are brave and willing and register to be in the clinical trials
- I appreciate the pharmaceutical companies who take huge risks in trying to bring new medicines to market. I’ve seen the hoops and rooms full of paperwork they have to go through to have something approved by the FDA
- I appreciate the FDA for doing its best to keep us safe from harmful medicines and procedures
- I appreciate the organizations like LRI (Lupus Research Institute) and ALR ( Alliance for Lupus Research) for being on the front line of funding, advocacy, and for being the voice of those who aren’t normally heard
- I appreciate all the physicians who treat the lupus patients on a daily basis
- I appreciate social media for allowing lupus patients to have access to other lupus patients so they don’t feel alone and isolated
- I appreciate groups such as com for starting on-line groups for patients to use to disseminate news and forge connections
- I appreciate all the lupus bloggers for keeping this disease in front of so many
- I appreciate the truthful news agencies who by reporting the news allow us to be appreciative
If you aren’t feeling particularly appreciative, look around. There may be more going on than you know.
From the life of Wanda M. Argersinger
© 2015 Wanda M. Argersinger and The Lupus Support Network, Inc.
Think for a minute and then ask yourself what was the last ‘good’ emotion you experienced? Can you even remember when it was? If you can remember when, can you remember what brought on this emotion? Did it last very long or were soon wondering where the good feelings went?
I am around lupus patients on a daily basis, and for the most part they are upbeat. Sure they experience lows in their lives, but they don’t seem to live there. But I hear just as often from patients who never seem to experience the highs of life or the good emotions. They appear to live in a life of gloom and doom.
It’s true that lupus patients do experience more down emotions than up emotions, but that doesn’t have to be so. Sure many patients suffer from depression, and of those, quite a few suffer from depression on a daily basis. But depression alone does not mean that we can’t also experience better emotions.
Excitement is one of those emotions. Think about a child in the weeks just before Christmas. When I think of excitement I often think of it in this way. But I also think of excitement when I read the daily news about lupus. If you don’t follow this news like I do you may not know how much research is being conducted with regards to lupus. There is research being done hoping to find new medications, new treatments, new testing procedures, and research that everyone is hoping to find the cause of lupus.
This last week I read about a new procedure that has been developed that can provide physicians with information needed about the kidneys of lupus nephritis patients without performing renal biopsies. That’s right. Your physician can get the information he/she needs without the invasive kidney biopsies you may have experienced in the past.
For all lupus patients, but especially those with lupus nephritis this is EXCITEMENT inducing news. This new procedures uses something called Raman scattering signals to provide the required information. According to one of the researchers “We are proposing the nephrologist will puncture the patient’s skin, go to the surface of the kidney, and not puncture the kidney, but probe the surface of the tissue and acquire Raman signals,’ Mohan said. ‘The patient will feel a little pinch and poke through the skin, but the kidney is not hurt at all.”
Along with excitement I am feeling anticipation. Just like Christmas for a child, I can hardly wait for this to be on the market and widely accepted and used.
Are you excited now?
From the life of Wanda M. Argersinger
© 2015 All Rights Reserved for Wanda M. Argersinger and The Lupus Support Network, inc.
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 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
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.
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 knick 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.”
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
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
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 think that you can be an emotion? If you ask me that question, I would have to say yes. People are often their emotions, or at least that’s how we view them and then judge them to be. If I am really honest, I am guilty of this – this judging people by their emotions. I am like many others in this world. We see people who cry often, and before we ask why, we think they are not strong people. We see people who judge others and comment for others to hear, and without knowing their story, we judge them as mean spirited, or uncaring. We are often quick to judge others who are not like us. Knowing all of this, if I asked you now, can you be an emotion, would you answer differently than before? I began writing this thinking about something and since these blogs are currently about emotions, I had to verify that it even was an emotion. I am talking about the word brave, in all its forms, including bravely. We normally think of people as being brave, or acting bravely. But the feeling of brave or bravely is indeed an emotion. Because we associate it with how a person feels or acts, in this case they become their emotion. Lupus patients are some of the bravest people I know. They live day to day with no end to their disease in sight, and knowing that treatment options are limited. That is just the beginning of their bravery. They go about their days in pain, often debilitating pain, and yet they often smile, and ask others how they are doing, or if there is anything they (the lupus patient) can do for them. They swallow handfuls of medication on a daily basis knowing that all of the pills may cause side-effects and may not even help the lupus. They work, either at a job, or at home. They care for their families. They do all they can, and only when exhausted to they stop. Most don’t know the words ‘no’, or ‘can’t’. They are brave, and are this particular emotion. If you aren’t feeling brave right now, look in the mirror. If you are still standing, or haven’t given up, then you are the image of a brave person. You are this emotion and have every right to feel brave. From the life and mind of a lupus patient: Wanda M. Argersinger ©2015 All Rights Reserved by Wanda M. Argersinger and The Lupus Support Network www.thelupussupportnetwork.org/blog
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. The opportunities are endless. When a patient is seeking to find out what is wrong with them, searching for a diagnosis, many feel abandoned by medical practitioners. They often ask the question, “why?” Why can’t you tell me what is wrong with me? Why is it taking so long for a diagnosis? Why do you think I’m making all of this up? And a million other whys? Before or even when a diagnosis is made patients often feel abandoned by their family and loved ones. This often comes from disbelief, misunderstanding, incomplete understanding, disillusionment, fear, wanting things the way they were, and even from being tired. When we, as patients, have a difficult time understanding, how do we expect others to completely understand what we are going through? When we make dates or agree to attend events and more often than not we cancel or simply don’t show up, what are others left to think? Isn’t it understandable that they will stop asking us to go with them? When our lives and the lives of our families change due to our illness, is it any wonder they want things the way they used to be? When all these things happen and friends, relatives, and loves ones pull away, certainly we will feel abandoned. If we can’t do our work as we used to or put in long hours as we have in the past, and our employers pass our work to others, does that cause a feeling of abandonment? When new medications take 50 years or more to make it to market, or don’t come at all, do we feel abandoned by researchers, and the pharmaceutical companies? What about those who promised to always be by our sides? Have they abandoned us? Should we speak of our bodies, our minds, and our very beings? Do we feel they have abandoned us also? We gain weight. We lose weight. We have mental lapses. We own 4 different sizes of clothes. Is there anyone or anything that hasn’t abandoned us? Yes, it can be a lonely place living with lupus. But if you open your eyes you may see that you are not abandoned, at least not by everyone. This past weekend The Lupus Support Network hosted a walk. Almost everyone who showed up was a stranger to me, for about a minute. Once I said hello, they became friends. They were already warriors in this fight against lupus, I simply didn’t know they were out there and who they were. I read lupus updates daily and see which pharmaceutical companies are working on what medications for the treatment of lupus. It gives me renewed hope. I get responses to my blog posts and e-mails telling us to keep doing what we do and I know others are listening and care. When I feel alone and abandoned all I have to do is open my eyes. It’s then I realize none of us have been abandoned, not completely. People come and go in our lives. It happens whether you have a lupus or not. It’s part of life. Look around. Read. Call someone. Come to a support group or a walk or a golf tournament. You will soon see you are not alone. From the life of Wanda M. Argersinger © 2015 Wanda M. Argersinger and The Lupus Support Network, Inc. www.thelupussupportnetwork.org