One Day...

As I get older this illness gets worse I'm always in and out of the hospital. The pain is even worse than before. I used to love winter but now I regret it every year. Now my toes have JRA and now it hurts to walk. Every 6 months I'm having surgery just so I'm able to do anything. My best friend moved in with me to help me. We have been friends since the age of 5. She helps me do my hair when I can't. My mom wanted to put me in a nursing home but my surgeon stepped in and started to put me back together. He is such an amazing doctor. I've had days where I was ready to give up but then I remembered that I have kids and my family who needs me. They cheer me on every day. Sometimes the help from everyone doesn't help. They make me feel helpless at times like I can't do anything right. Yeah sometimes I do need help doing things and if I can't do it I'll ask for help. In the beginning I was on 30 to 40 medicine. Every Wednesday I had to get a shot. and it cause my hair to fall out and I wasn't able to eat anything. I always had peppermints with me. At this time my son was 3 he watched me go in and out of the hospital. Ambulance always showing up at my moms cause I was in so much pain that you couldn't touch me. I was ready to give up but the look in my son eyes showed me different. So I kept fighting every day. Now here comes the surgeries. My first surgery was a knee replacement and that truly made me feel like I wanted to die. I had to learn how to walk all over again. The pain was worth it cause I kept telling myself that after these surgeries I would be able to take my son to the park and play with him just like how I saw the other moms do with their children. I wanted to be that mom. Sometimes I used to cry watching my son play. He would come up to me asking me to play and when I would tell him that mommy couldn't it would break my heart. Now I realized what the doctors where trying to tell me...now since I've gotten older I have more pain, its hard for me to sleep cause I can't get my body comfortable. Sometimes I cry myself to sleep just wishing that I wouldn't wake up. I've been strong for so many years and now its getting the best of me. I just wanted to be like everyone else...ride a bike...just writing hurts my fingers. They have doctors that can fix any body part but not fingers. That would be a dream if I got my fingers fixed. My fingers are so crippled that there are days my best friend has to write for me. I called her my extra pair of hands lol. She has been by my side and walked through the flames of hell next to me. My mom can't make it to my surgeries anymore cause she has health issues herself. My depression was getting worse it sucked, started to feel like I was lost in a dark room. Now I'm having surgeries every 4 to 6 months. I used to tell people that when everyone around starts falling apart I'll be getting a body upgrade lol. I've had people asking me how could I joke about being sick? If I don't joke then I let the illness win... I have my good days and bad days also. I am on medicine to help me sleep. I'm seeing this doctor to help me sleep at night and he told me that the reason I'm so upset is cause I can't accept my illness. He is right cause till this day it's hard for me to accept it all. How can I? I've even done baby steps...go day by day and I'm 43 and still can't. Some days I have to ask myself is this the plan God has for me? I understand God works in amazing ways cause look I've beaten my odds and I have children. I was always told that God doesn't give you more than you can handle. Well life has knocked me down many times but I still get up. I get up and stand even stronger and ask life "is that all you have." (SLE) is an inflammatory disease caused when the immune system attacks it's own tissue. Lupus (SLE) can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Treatment can help you but this condition can't be cured. It does requires a medical diagnosis. Lab test or imaging always required. Chronic: can last for years or be lifelong. Pain areas: in the muscles Pain types: can be sharp in the chest Pain circumstances: can occur while breathing Whole body: anemia, fatigue, fever, or malaise Hair: hair loss or loss of scalp hair Skin: red rashes or scaly rashes Mouth: dryness or ulcers Also common: anxiety, blood in urine, clinical depression, face rash, flare, headache, joint stiffness, raynaud's syndrome, sensitivity to light, swelling, water retention, or weight loss. Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare-up) and then improve. Treatment consists of immunosuppressants While there's no cure for lupus, current treatments focus on improving quality of life through controlling symptoms and minimizing flare-ups. This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medications, such as anti-inflammatories and steroids. How serious is SLE? The seriousness of SLE can range from mild to life-threatening. The disease should be treated by a doctor or a team of doctors who specialize in care of SLE patients. People with lupus that get proper medical care, preventive care, and education can significantly improve function and quality of life. The causes of SLE are unknown, but are believed to be linked to environmental, genetic, and hormonal factors. People with SLE may experience a variety of symptoms that include fatigue, skin rashes, fevers, and pain or swelling in the joints. Among some adults, having a period of SLE symptoms—called flares—may happen every so often, sometimes even years apart, and go away at other times—called remission. However, other adults may experience SLE flares more frequently throughout their life. Other symptoms can include sun sensitivity, oral ulcers, arthritis, lung problems, heart problems, kidney problems, seizures, psychosis, and blood cell and immunological abnormalities. SLE can have both short- and long-term effects on a person’s life. Early diagnosis and effective treatments can help reduce the damaging effects of SLE and improve the chance to have better function and quality of life. Poor access to care, late diagnosis, less effective treatments, and poor adherence to therapeutic regimens may increase the damaging effects of SLE, causing more complications and an increased risk of death. SLE can limit a person’s physical, mental, and social functioning. These limitations experienced by people with SLE can impact their quality of life, especially if they experience fatigue. Fatigue is the most common symptom negatively affecting the quality of life of people with SLE. Many studies use employment as a measure to determine the quality of life of people with SLE, as employment is central to a person’s life.3 Some studies have shown that the longer a person has had SLE, the less likely they are to be a part of the workforce. On average, only 46% of people with SLE of working age report being employed.3 Adherence to treatment regimens is often a problem, especially among young women of childbearing age (15 to 44 years). Because SLE treatment may require the use of strong immunosuppressive medications that can have serious side effects, female patients must stop taking the medication before and during pregnancy to protect unborn children from harm. SLE is diagnosed by a health care provider using symptom assessments, physical examination, X-rays, and lab tests. SLE may be difficult to diagnose because its early signs and symptoms are not specific and can look like signs and symptoms of other diseases.1 SLE may also be misdiagnosed if only a blood test is used for diagnosis. Because diagnosis can be challenging, it is important to see a doctor specializing in rheumatology for a final diagnosis. Rheumatologists sometimes use specific criteria. SLE can affect people of all ages, including children. However, women of childbearing ages—15 to 44 years—are at greatest risk of developing SLE.1 Women of all ages are affected far more than men (estimates range from 4 to 12 women for every 1 man). Minority racial and ethnic groups—blacks/African Americans, Hispanics/Latinos, Asians, and American Indians/Alaska Natives—are affected more than whites/Caucasians. SLE treatment consists primarily of immunosuppressive drugs that inhibit activity of the immune system. Hydroxychloroquine and corticosteroids (e.g., prednisone) are often used to treat SLE. The FDA approved belimumab in 2011, the first new drug for SLE in more than 50 years. SLE also may occur with other autoimmune conditions that require additional treatments, like Sjogren’s syndrome, antiphospholipid syndrome, thyroiditis, hemolytic anemia, and idiopathic thrombocytopenia purpura. SLE is relatively uncommon, is difficult to diagnose, and is not a reportable disease, so it is expensive to capture all diagnosed cases reliably for epidemiologic studies. There are no recent studies to determine if SLE prevalence or incidence are changing over time. Prevalence is a measurement of all individuals affected by a disease at a particular time, usually a year. Can a person die from SLE? Causes of premature death associated with SLE are mainly active disease, organ failure (e.g., kidneys), infection, or cardiovascular disease from accelerated atherosclerosis. Your immune system protects your body from infection. But when you have lupus, your immune system attacks your own tissues. This leads to tissue damage and illness. The symptoms of lupus vary from one person to another. Some people have just a few symptoms, while others have many. Lupus Complications Many people who have active lupus feel ill in general. They have fever, weight loss, and fatigue. When their immune system attacks a certain organ or part of the body, they can also have more specific problems. Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks healthy tissue. Due to its complex nature, lupus is sometimes known as the “disease of a thousand faces.” This condition typically goes through cycles of flare-ups and remissions. During times of remission, a person with lupus may have no symptoms. During a flare-up, the disease is active, and a person’s symptoms return, or new symptoms may appear. Some people with SLE may have regular flare-ups. Others may only experience them every few years. Still others may experience long-term activity. I have experience a lot of this during my lifetime some days I wonder if this is the day I'm going to wake up with a flare-up. my hair is always falling out I'm always tired but on my good days I feel like I'm floating on cloud nine.