Dealing With The Most Difficult Days

What do you do when you feel like it's the worst day ever and you want to give up?

by Jenni Prokopy, the Editrix  http://www.chronicbabe.com/

I've had them, and I bet you have, too: Those days when everything feels way too hard, like every small task is Herculean, like the world is out to get you, like nothing on Earth will ever be right again. 

 The days when you feel like giving up.

The days when you think it might just be easier to quit work, go on disability, and stop caring about your career.

The days when you want to tell everyone you know to eff off. 

The days when you want to throw your purse in the car and just drive off into the sunset.

The days when you want to kick your doctor in the nuts. 

The days when you feel utterly alone.

The days when no one—not your nephew, your husband, your girlfriend, your daughter—can make you laugh, because there's not a damn funny thing in the universe.

The days that feel like a horror movie.

The days when you turn out the lights, curl up under the covers, and sob yourself to sleep.

The days when you Google your conditions endlessly, hoping someone has come up with a magic fix.

The days when you feel like it's not worth trying anymore.

The days when you just don't care. 

The days when you feel like it's not worth it.

The days when you feel like giving up.

Yup, I've had those.

You might be surprised by how often I hear this question:Maybe YOU haven't felt this way, but how am I supposed to cope on the days when I want to give up?

Oh, ladies. If you think I've never wanted to give up, you've got me all wrong. I've had plenty of those days, and I'm sure in my life I'll have at least a few more. Even the most kickass ChronicBabe has moments of self-doubt and exhaustion and frustration. 

It just comes with the territory.

So what do you do when you want to give up?

First: Don't. 

Next: Come here. Notice that there's not just a website, but an entire community of women who have walked in your shoes. So you may not have someone holding your hand physically, but you've got thousands of women who can support you during your time of need.

Then: Watch this 5-minute video of Bjork singing "It's Not Up To You," a song I find immensely comforting. Thelyrics include this perfect bit: "If you wake up, and the day feels broken, just lean into the crack, and it will tremble, ever so nicely, notice how it sparkles, down there...I can decide, what I give, but it's not up to me, what I get given..." She's talking about acceptance, babes, and learning how to not fight the unfightable. And taking charge of what you CAN do. 

Maybe about now you're thinking, Jenni, it's just not that easy. You're right. It's not easy. It's effing hard. It sucks. 

But it's not impossible. Now take the next steps with me:

Drink a glass of water. Wash your face. Take a few deep, diaphragmatic breaths. Do what you need to get yourself calm. Freaking out isn't helping you or the people who want to help you.

 Call or IM or Skype (or whatever) someone you know and love. Tell them you're struggling with big doubt and that you need an ear, a shoulder to cry on. Ask them to simply listen to you. Start there. Often, simply telling another person our concerns provides us some relief.

Distract yourself. Grab a book, turn on the TV, do a craft, take a walk, look at the stars, browse the web. Do something that gives your mind a break from your sorrow.

Now that you're a bit calmed down and not feeling so urgent...

...you can take some proactive steps to work out the issues that are making you so upset. I know—you can't get rid of the biggest issues, your illnesses. But what are the second-tier issues you can start tackling?

Can you work on a budget for living on less, so your medical expenses aren't so scary?

Can you share resources with family or friends so you're stretched so thin?

Can you find sources of humor or distraction that help soothe your soul?

Can you make a plan to search for a new place to live?

Can you reach out to your illness community for help finding a new doctor?

Can you make a phone tree?

Can you write a personal mantra on a piece of paper to carry with you everywhere?

Can you schedule a coffee date with a close, nurturing friend?

Can you take a calming bath?

Can you put this aside for a day and get some rest, so you can tackle it fresh tomorrow?

This is the time to get strategic.

This is the time to write up your plan. Map out all the small steps, and schedule time to accomplish them. Talk to people you love and see who can help you meet your goals. Set a timeline for achieving the changes you need.

You can do this. So many have done it before you. You are not alone. You have resources. This is not impossible. 

4 Steps Creative Steps to Healing

Four Steps To Creative Healing

Ever have the feeling that dis-ease was controlling your life? Perhaps it's not even a chronic illness. Do you harbor anger? Resentment? Frustration? Maybe it's just me and I'm talking to myself, but I've let all of these rule my life at some point.

By: Laura Turner
Ever have the feeling that dis-ease was controlling your life? Perhaps it's not even a chronic illness. Do you harbor anger? Resentment? Frustration?

Maybe it's just me and I'm talking to myself, but I've let all of these rule my life at some point. Therefore, in this short article, I thought we'd take a look at "Four Creative Steps To Healing." From it, I hope you'll gain insight into yourself, your behaviors and perhaps the way you deposit or withdraw from your own health currency.

Step One: Understand Your Energy

We've all heard about the aura that surrounds the body, but what could this possibly have to do with our health? According to Carolyn Myss in her audio program "Why People Don't Heal," the energetic exchange that happens within this field is where our thoughts become translated into energy (or what she terms as one's biography becoming their biology). Translation: These cycles or waves of energy that surround our body are a function of our thoughts. Thoughts are energy waves then, that affect our health in a positive or negative way. Let's look a little closer to see why this happens:

The contributors to this energy surrounding the body are the 7 major "chakras" (chakra in Sanskrit means "wheel or vortex"). It may help to note that Myss refers to each energy wheel as a "computer," one which collects and interprets information and "perceptions" the mind has about the world. It has been shown scientifically that each of these 7 wheels of energy corresponds to a particular endocrine gland in the body. Translation: In light of the adage, "you are what you eat" we could conclude with with some degree of certainty that "you are what you think."

Step Two: Let Go Of Old Wounds

Now that you've been (hopefully) examining your thoughts and translating all of your negative energy into positive, Myss throws another curve ball. Would you agree with her that "healing is unattractive?" I needed some time to think about this: Why in the world would healing be unattractive?

Answer (According to Myss): Our wounds give us power! And after careful contemplation, I've outlined three ways I have done this, myself.

Ask yourself: Are you leading with your wounds? You'll know if you done any of the following:

1. Used Wounds to Manipulate a Situation or a Person.

Let's say we find a situation unsavory, scary or inflaming a personal "hot button." Have you ever avoided a situation when you really needed to face head on? Or, how 'bout this one: "I just can't get into this relationship - I've been burned before!" Okay, maybe I am just speaking to myself here, but I admit, I've used my wounds (more times than I care to admit) to refrain from loving unconditionally.

2. Use Them to Attract Other Wounded Souls Who Want to Exchange in the "Wound" Game.

I've done this myself, too. In listening to another share their wounds, I've given up compassion for wound ante - "Ill see you and raise you one." Agreed, there is a difference between healing from a wound and "leading with a wound" but, in my humble opinion, I'd be willing to bet that we know the difference between being healthy and not. For example, I know when I'm healthy when I can listen with empathy, void of getting out my toolbox to "fix" or laying out my wounds unsolicited.

3. Give Up Our Ability to Listen.

Dr. Bernie Siegel in his book "Peace, Love and Healing" basically says, listening is the work of angels. Many times listening is all we have in a situation when someone calls on us for help. If we express what Ms. Myss calls "woundology" or "leading with our wounds" we're saying that we can't stand the loss of power and desire all the attention for ourself.

Since I'm laying out all my laundry here today (And what would Myss have to say for this?) here's an example of the way I've led with my wounds: Recently someone confided in me about a situation where they had lost a loved one. While listening attentively, my mind searched its experiences for a similar event. All this so I could say: "Oh that's terrible! Don't feel so bad though, because I've been through this thing that is so much worse!"

To reclaim my character, however, (and after I realized what was happening), I caught myself. In reality, all this person really needed was my ear to listen unconditionally.

Step Three: Learn To Forgive Yourself and Others

The final two steps are remedies which can help heal our anger, resentment and frustration. Step three then, is simply forgiveness. For to forgive in earnest then takes our energy out of its emotional investment in the past. We give up the need to spend wasted energy making negative deposits into this account and to paraphrase Myss, is the fastest way to bring our energy into real time. Translation: Trust me, you'll know authentic forgiveness when you experience it. The body literally "lets go" of the weight of the past.

Step Four: Love Yourself

The final creative step to healing? Loving yourself, of course! This is the most challenging concept, in my opinion. Why? To begin we must start where we are, and love and accept ourselves for who we are, today. How does this help our health? It's simple,

when we realize that we are stunting our personal growth and health through negative self talk, we can then begin to love ourselves one piece at a time.

Here's how it's done (Author's note: beware, this practice may seem untraditional yet, if you'll consult Louise L. Hay's book: "You Can Heal Your Life" - you'll find that this is one of the remedies she used to heal herself from cancer):

Every day spend 15 minutes in the mirror sending love to yourself! Start small by finding one part of yourself where you can find perfection. Each day, or week, or month choose new parts of yourself to love. Before long, you'll find an image of perfection before your eyes. And you'll have purified your energy, to boot!

In closing, we could make all of these steps very simple, indeed. For there is only one step here that will make you healthy and happy. Remember: It's when we've learned to love ourselves that we can truly be healed.

References:

Myss, Carolyn, Ph.D. Why People Don't Heal. Colorado, 2001. Sounds True Audio.

Siegel, Bernie, M.D. Peace, Love and Healing. New York: HarperCollins. 1989.

Hay, Louise L. You Can Heal Your Life. California: Hay House. 2004.

Laura Turner is a health journalist and author. She hosts http://www.beauty-and-body.com and publishes the bi-weekly New Body News and Wellness Letter, The Online Magazine Healthy People Read. ( http://www.new-body-news.com )Subscribe for f.r.e.e. and receive her Special Report: "Take Charge of Your Health!"

Lupus Flares

Flare Indicators Worsening Fatigue Fever Rash     rash on the cheeks     raised rash with little white bumps     redness of fingertips, tips of toes, areas around fingernails     redness on the palms or soles of the feet Areas of vasculitis (inflammation of small blood vessels), which could be characterized  by small ulcers Fishnet pattern to the skin Fluid or air filled blisters Loss of hair Sun sensitivity Mouth or nose ulcers Joint pains Muscle inflammation Small nodules on the tendons (around the elbow or on the ankles) Enlarged lymph nodes Enlargement of the parotid glands (glands in the cheeks) Low platelet count Low white count or low lymphocyte count High blood pressure Menstrual period  irregularities Sore throat, backache, headache Eye problems     spots in the eyes called cotton wool spots     small hemorrhages     little clotted blood vessels in the eyes (found by your doctor) Triggers of lupus flares: Sunlight Ultraviolet light Infections Stress Surgical Procedures Pregnancy Sulfa drugs Birth control pills Radiation therapy          Systemic Lupus Erythematosis A chronic inflammatory autoimmune disorder that may affect many organ systems including the skin, joints, and internal organs.  In lupus, the body develops antibodies that react against a person's normal tissue, which can lead to inflammation, arthritis pain, tissue injury and major organ damage. When the human body develops an infection, or is subjected to surgery or trauma, it develops antibodies to fight off the infection or trauma. Once the infection or illness is under control, the antibodies die off and the white cell count returns to normal. In Lupus patients, the antibodies love fighting so much, they mutate and begin to fight not only "bad germs" but normal body cells as well. The body is fact begins to destroy itself. Common signs and symptoms of disease that lupus sufferers experience can lead to a poor quality of life. Lupus can be mild but also can cause significant and potentially serious damage to organs such as the lungs, heart, kidney, and brain. The disease is characterized by flares of disease activity interspersed  with periods of improvement or remission. Causes, incidence, and risk factors: Normally the immune system controls the body's defenses against infection. In Systemic Lupus Erythematosus (SLE) and other autoimmune diseases, these defenses are turned against the body when antibodies are produced against its own cells. These antibodies fight against the body's blood cells, organs, and tissues, causing chronic diseases. The mechanism or cause of autoimmune diseases is not fully known. The disease affects 8 times as many women as men. It may occur at any age, but appears mostly in people between the ages of 10 and 50 years. SLE may also be caused by certain drugs. When this occurs, it is known as drug-induced lupus erythematosus and is usually reversible when the medication is stopped. The course of the disease may vary from a mild episodic illness to a severe fatal disease. Symptoms also vary widely with the individual and are characterized by remissions and exacerbation. At its onset, only 1 organ system may be involved. Additional organs may become involved later. The following organ system manifestations may be seen, but other manifestations are possible. Musculoskeletal: Almost all people with SLE have joint pain and most develop arthritis. Frequently affected joints are the fingers, hands, wrists, and knees. Death of bone tissue can occur in the hips and shoulders and is frequently a cause of pain in those areas. Skin: A malar "butterfly" rash over the cheeks and bridge of the nose affects about half of those with SLE. The rash is usually worsened by sunlight. A more diffuse rash may appear on other body parts that are exposed to the sun. Other skin lesions or nodules can occur. Kidney: Most people with SLE have some deposits of protein within the cells (glomeruli) of the kidney; however, only 50% have lupus nephritis as defined by persistent inflammation in the kidney. They may eventually develop renal failure and require dialysis or kidney transplantation. Nervous system: Neurological disorders can affect up to 25% of those with SLE. Mild mental dysfunction is the most common symptom, but any area of the brain, spinal cord, or nervous system can be affected. Seizures, psychosis, organic brain syndrome, and headaches are some of the varied nervous system disorders that can occur. Blood: Blood disorders can affect up to 85% of those with SLE. Venous or arterial blood clots can form and are associated with strokes and pulmonary embolism. Often platelets are decreased, or antibodies are formed against blood clotting factors, which may cause significant bleeding. Anemia of chronic disease often develops at some point in the course of the disease. Heart: Inflammation of various parts of the heart may occur as pericarditis, endocarditis, or myocarditis. Chest pain and arrhythmia's may result from these conditions. Lungs: Pleurisy, an inflammation of the lining of the lung, and pleural effusions, a fluid collection between the lung and its lining can occur as a result of SLE or infection. Chest pain and shortness of breath are frequently results of these disorders. Symptoms: fever fatigue general discomfort, uneasiness, or ill feeling (malaise) weight loss skin rash malar "butterfly" rash sunlight aggravates skin rash spotting of skin exposed to sunlight sensitivity to sunlight joint pain and swelling arthritis swollen glands muscle aches nausea and vomiting pleuritic chest pain seizures psychosis Additional symptoms that may be associated with this disease: blood in the urine coughing up blood nosebleed - symptom swallowing difficulty skin color is patchy red spots on skin fingers that change color upon pressure numbness and tingling mouth sores hair loss abdominal pain visual disturbance   Signs and Tests: The diagnosis of SLE is based upon the manifestations of at least 4 out of 11 typical characteristics of the disease. Tests to determine the presence of these disease manifestations may vary but will include some of the following: antinuclear antibody (ANA) panel characteristic skin rash or lesions chest X-ray showing pleuritis or pericarditis listening to the chest  with a stethoscope to reveal heart friction rub or pleural friction rub urinalysis to show blood, casts, or protein in the urine CBC showing a decrease in some cell types kidney biopsy neurological examination This disease may also alter the results of the following tests: WBC count serum globulin electrophoresis rheumatoid factor protein, urine protein electrophoresis - serum mononucleosis spot test ESR cryoglobulins Coombs' test, direct complement component 3 (3C) complement antithyroid microsomal antibody antithyroglobulin antibody antimitochondrial antibody anti-smooth muscle antibody Treatment: There is no cure for lupus,  just management of the symptoms. Overview: The disease has multiple manifestations with variable severity, which determines individual treatment. Medications: Mild disease (rash, headaches, fever, arthritis, pleurisy, pericarditis) requires little therapy. Nonsteroidal anti-inflammatory medications (NSAIDS) are used to treat arthritis and pleurisy. Corticosteroid creams (see Corticosteroids - topical - low potency) are used to treat skin rashes. Antimalarial drugs (hydroxychloroquine) are sometimes used for skin and arthritis symptoms. Sensitivity to light is treated by protective clothing, sunglasses, and sunscreen. Severe or life-threatening manifestations (hemolytic anemia, extensive heart or lung involvement, kidney disease, central nervous system involvement) often requires treatment by specialists in the specific area. Corticosteroid therapy may be prescribed to control the various manifestations of severe disease. Some health care professionals use cytotoxic drugs (drugs that block cell growth) in people who do not have a good response to corticosteroids. Immunosuppressive medications. These drugs, such as azathioprine (Imuran) and cyclophosphamide (Cytoxan), reduce your normal immune response. Your doctor may prescribe them if lupus is widely affecting your organs, especially your kidneys. Other similar medications are methotrexate (Rheumatrex), chlorambucil (Leukeran) and cyclosporine (Neoral, Sandimmune, SangCya). Immunosuppressive medications may cause anemia and a low white blood cell count. They may also increase risk of infection and cancer. Your doctor may prescribe them if corticosteroids aren't effective, or with a lower dosage of corticosteroids (to reduce side effects). Sometimes, even with the use of corticosteroids and immunosuppressive drugs, your kidneys may fail. You may need kidney dialysis or, if kidney failure is permanent, a kidney transplant. Tips on giving yourself the best chance for the medicines to help: Become an expert on your medications. Save the material the pharmacist gives you when your fill your prescription. Know the generic and the brand names of each. Know the dosage and the schedule. Do mealtimes matter? What good is the medication supposed to do? How are you supposed to feel if it works... or doesn't work? Notice any allergic reactions immediately. How long is is supposed to take? Plaquenil can take 6 weeks or more to have an effect, while prednisone begins to work almost immediately. What are the potential side effects? When is it necessary to call the doctor about them? Will taking this medication require monitoring of my liver or other organs? When will the follow-up appointment need to be scheduled? What happens if you forget a dose? What are the potential food-drug or drug-drug interactions? Can I take this medication with milk? What about alcohol? Do foods or beverages reduce it's effectiveness? Will taking this drug make me more sensitive to the sun? (photosensitive). How will this drug be affected by over the counter medications, herbs, and any nutritional supplements I am taking? These are questions you may need to consult your doctor or pharmacist on, and don't be shy about it. Take all medications as directed, and keep a record. Be honest - if cost or a troubling symptom are keeping you from taking the medication as prescribed, let your physician know. Lifestyle Changes: The stress of illness can often be helped by joining a support group where members share common experiences and problems. Resting more becomes a necessity rather than an option. Expectations (prognosis): The outcome for people with SLE has improved over recent years. Many of those affected have mild illness. Women with SLE who become pregnant are often able to carry the pregnancy safely to term and deliver normal infants, provided severe renal or heart disease is not present, and the SLE is under treatment. The 10 year survival rate exceeds 85%. People with severe involvement of the brain, lungs, heart, and kidney have the worst prognosis in terms of overall survival and disability. Complications: infection renal failure thrombocytopenia hemolytic anemia myocarditis seizures Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral. Lupus Foundation of America., Inc. 1300 Piccard Drive, Suite 200 Rockville, MD 20850-4303 301-670-9292  800-558-0121 http://www.lupus.org