Tuesday, August 14, 2012



I was born with lupus... it is a hard disease to cope with and this only touches on certain aspects of the disease.....

Lupus is known as an invisible chronic illness. Appearance is not an indicator of lupus. Looking good and feeling good are not the same. It is frustrating to have someone say how well you look even when you feel terrible. People who look good have a right to feel bad, no matter what others think and say.

Lupus Erythematosus (Lupus) is a chronic autoimmune disease in which the immune system treats thebody's own healthy tissue as foreign and produces antibodies to attack one's own body. Symptoms includea characteristic butterfly-shaped rash on the face, headache, fatigue, arthritic joint disease, heart damage,shortness of breath, and impaired kidney function. There is presently no cure. Lupus follows an irregularcourse of remissions (inactive time) and flare-ups (active times), and may often be incapacitating. An esti-mated 500,000 to 1.5 million people in the United States suffer from lupus and the disease strikes womennine times more than men. Lupus affects each individual physically. It also affects the person and those thatlove that person emotionally.

While the physical symptoms vary from person to person, people with lupus experience similar emotions. Newly diagnosed patients may have feelings of anger, guilt, sadness, fear, and sometimes, even relief thatthere is a name, an identity for the symptoms they experience. Lupus symptoms are similar to many otherdiseases. Since the symptoms come and go, others may not "believe you" when they hear your complaints.Everyone feels fatigued or achy at times. When finally diagnosed, it is a validation. There is a reason forthese feelings. They are real, lupus is real.It is common to go through a grieving process after diagnosis. The process includes emotional stages suchas shock, bargaining, denial, anger, and depression. While these can be uncomfortable, they are normal feel-ings. The person must grieve for what was, for their healthy self, before they can accept what is and whatis to be. Acceptance arrives sometime during the final stage of the grief process. The individual can say,"Okay, now I need to live my life with this illness as best I can." At this point lupus becomes one segmentof your life and no longer the main focus. Lupus finds its place in your life.The grieving process can take up to two years before one reaches a level of acceptance. Acceptance is noteasy, but once it happens, it provides a level of comfort. It is not unusual if during a flare, the patient expe-riences grief-type feelings again. Because of past experience, acceptance will return more quickly than before.

Side effects of medications is a common frustration. Prednisone can sometimes cause a ravenous appetite andultimate weight gain. Some people experience mood swings; feelings of euphoria one moment and depressionthe next. These symptoms are generally reduced when weaned off the steroids. Other frustrations may include:• Insurance and Medical Concerns: difficulties with health insurance and prescription coverage or lack there-of.• Physicians: Unable to find a physician they trust.• Fear of how this affects their employment.• Family members who do not understand.• Inability to meet daily activity requirements and the feelings of being inadequate.People who have lupus or love someone with lupus mayexperience depression. Symptoms may include:• Feelings of hopelessness, helplessness, or loss of desire for anything pleasurable.• Sleeping more than normal or having difficulty sleeping.• Eating more to "fill up the emptiness inside" or loss of appetite.• Isolation: Patients may stop seeing or talking to those they care about.If these symptoms persist, help must be sought. See a therapist, talk to a doctor, spiritual advisor, relative ortrusted friend. Every city has a crisis line. Help is available.LupusAmerica's Least Known Major Disease

The patient's support system is deeply affected by lupus. While lupus patients experience various emotions, those who love and supportthem also have a variety of feelings and emotions, such as:• Fear they might lose you.• Anger that this happened and how this affects them.• Guilt that you are sick and they are healthy.• Abandoned because you cannot "be there" for them.• Abnormal - everyone else they know leads a 'normal' life.• Financial concerns if you are no longer able to work or if they have to reduce their work hours to care for you.• Resentful of having to take on more responsibilities.• Afraid they may be unable to satisfy you or be satisfied sexually.• Helpless because they cannot "fix you and make you better."If any of these feelings are present, they are normal. These are common emotional feelings everyone experiences dealing with a chronic ill-ness.

Learning to utilize effective means of communication is vital to relationships.• Make time in a neutral territory to have an open discussion.• Do not accuse one another and place your loved one on the defensive. Take ownership of your feelings and discuss how things make youfeel.• Do not give each other platitudes. Do not say things such as "Don't worry things will be fine." "I know someone who feels like you andthey don't act like you." "Don't be such a baby." Preferred examples are: "I cannot understand how you are feeling, but I am here for you." "It makes me sad to know you feel like that." By these statements, you are validating your loved ones feelings. You are allowingthem to feel their thoughts are worthy whether or not you agree.

The only thing predictable about living with lupus is living with its unpredictability. A person may feel wonderful one day, and be in bed thenext. Patients may shy away from making plans for fear of being ill. This can create feelings of isolation. This unpredictability can cause a senseof loss of control. While lupus is often uncontrollable, how one deals with it is controllable. "I cannot control what I have. I can control howI think about what I have." "I cannot control what my loved one has. I can control how I think about what he/she has." Learn to read thebody's signals. Know when the "light is green" and you feel wonderful and energetic. Learn when the "light is yellow." Slow down and be care-ful. Definitely learn to acknowledge when the "light is red". All things stop. Obey the body's signals by resting and caring for yourself or allow-ing yourself to receive care. Stress is something most people with lupus or their loved ones feel. It can be stressful living day to day with a chronic illness. During a flare,functioning normally is difficult. Daily responsibilities are a challenge Even when not in an active period, levels of fatigue may inhibit what other people feel are normal daily activities. It is important to learn new coping and relaxation techniques, how to prioritize, delegate and sometimessay no. It is healing to accept that you do not have to be perfect to accept yourself.Having lupus does not mean life is over. It can mean a new beginning. Life will present new challenges. Begin to focus on the positives, not thenegatives. Accept that which cannot change and be kind to yourself when feeling ill. Take time to grieve and learn new coping skills. Express feelings honestly. Let those supporting you understand how you are feeling. Find a doctor you trust, someone you can be open with. Pace your-self, and learn as much about your illness as possible.If you are the significant other, accept the fact that you cannot fix lupus and make it better. Help your loved one simply by being there. Obtainyour own support system so you can vent your feelings. Make certain you have respite help if you are the caregiver. Accept that the word "self-ish" is a positive, not a negative term. It is vital to care for yourself in order to care for your loved one.Lupus will cause some very difficult days. Become proactive about lupus and not reactive. Remember lupus is only one part of your life. It is not your life.



1 comment:

  1. Thank you for the information. My diagnousis are new...lupus, sjgoerns, raynards along with having constant pulsing in my head that can't find a cause. Just for fun lets throw in digestive issues and gluten entolerance as well as dairy. Yes I am seeing a therapist but as well as I'm handling ll of this I think there is a degree of denial. My children live in 3 different states and I am a retired senior citizen living on social security. Couldn't make this up if t tried. I plan on attending a lupus group at a local hospiral where I volunteer. Exercise is difficult as I have an active neuroma in my foot. Will work on getting in a pool (indoor ) but having really hard time getting going and being structured. I have never commented on anything like this but I've never been in this boat. Thanks for letting me vent to someone thst understands