Lupus is NOT CONTAGIOUS but your germs can kill a lupus warrior due to weak immune system. 🤦🏽♀️ #geteducated #mayislupusawarenessmonth #spoonielife #spoonie #spoontheory #lhandsign #lupus #lupussupport #lupuslife #lupussucks #healthiswealth #butterflies #butterflyeffect #wings #wolf #awareness #lupusawareness #lupusadvocate #lupuswarrior #curelupus #cure #bekind #immunesystem #germs
Category: About Lupus
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Lupus is a chronic autoimmune disease. It effects many areas of the body. The cause of this silent illness is unknown and as of now, only treatable. There is no cure for this invisible mystery. 💜Spend this month getting educated. #lupusoracle #mayislupusawarenessmonth #lupusawareness #helpusfindacure #lupuslife #whatislupus #lhandsign #spoontheory #spoonie #lupussupport #lupusadvocate #geteducated #healneverhurt #getintheloop #luppies #healthiswealth #healthylife #health #fitness #education #doctor #treatment
Finally, 12 years living with Lupus, I heard the words I have been longing to hear for many years “Your Lupus Is In Remission” I am sure many of you reading this will wonder, how is remission possible living with an invisible illness such as Lupus? Although, I am not a doctor and I do not have all the answers. I can only educate on what I have done to reach the point of remission. I call it the 4 P’s Preparation, Patience, Positivity and Perseverance
My Preparation began with believing in myself and knowing that it is possible to live a fruitful life while living with Lupus. I began to question everything around me. I began to become more entwined with my body. I notice how my body would react when I ate certain types of food. I began to notice what drained my energy or how my stomach just did not agree with meat. So, I then decided it was time to cut chicken and turkey out of my diet. As I cut certain meats out of my diet. I began to eat more salmon which is high in omega 3 and aids with inflammation. Drinking smoothies at least 6 times a week and eating fresh fruits and vegetables are a tremendous part of my new diet. Within 2 weeks of this food transition, I noticed my body started to feel more energized. To my surprise, my symptoms had began to digress and when I returned to my Rheumatologist, my blood results had improved, which lead to lowered doses of Prednisone and now living my life without Prednisone. It is now two months and I have been living without Prednisone, my body no longer depends on the steroid. I am forever thankful. I knew right away that the change in my diet was what caused my Lupus symptoms and blood results to show improvement. I began to boil and drink at least 3 times a week a Jamaican root called Cerasee. This root is known to cleanse the blood. Please keep in mind these are just little things that I did because I have been living with this illness for 12 years. However I am and was tired of living in pain.
While I tolerated the ups and downs of lupus, my hope for painless days grew stonger. Patience was encouraging myself not to become discourged and to push through my pain. Thinking to myself daily what else can I improve on my quest to living a healthier life while battling Lupus. Following doctors’ orders and making lifestyle changes, I began to get active. Running in a nearby park twice a week was a small start for me. Everything will take time and that’s understandable; that is where your patience will come into play. Holding on to the thought of living a life as close to pain free is what kept me going. No matter what your illness presents to you keep going and always try your best to smile. I totally believe that smiling is a remedy of its own.
Having a positive attitude will make all the difference while battling Lupus. Patiently waiting as I started to believe that with the help of my Rheumatologist and changing my diet, as well as becoming more active, I can overcome this illness. There are so many different meals that can aid in a better overall being and get you on the right track to remission. I feel that I allowed nature to heal me, by eating fresh fruits and veggies and moving. I stayed away from foods that would cause inflammation and pain. Then I put my plan into action and I started doing. I started to stay active whenever Lupus and my schedule allowed me. I am fully aware that there is no cure for Lupus and remission is just a temporary recovery, but it was worth a try and I am glad I took the chance to help myself on my journey to remission.
I feel the mind is way more powerful than we are aware of. I believe that whatever you truly believe, you will become. I believed in a better life while living with Lupus and I am now in remission, It all starts within you. Once you have prepared yourself mentally and have learned that everything takes time you will have a positive attitude and you will persevere.
Today is July 14, 2016 and I am glad to say it is the last day I will ever allow you to invade my body. I have been taking you since September of 2005. Lets take this time to reminisce, I have been on 40mg while carrying twins for 7 months. I have had many fractured bones. I’ve been diagnosed with pleural effusion which is fluid in the lining of my lungs and chest which resulted in doctors orders to take 20mg of prednisone daily. I’ve had issues with my kidneys, again placed on 20mg of prednisone daily. Although my dose of prednisone was lowered at times I would always have to return to a higher dose. March of 2016, I was placed on 20mg of prednisone due to a condition called Raynaud’s Syndrome which is poor blood flow to my fingers and toes. After changing Rheumatologist and discussing possible death in my near future, I decided to take control of this situation. I vowed to myself that I would work on removing prednisone out of my life, hopefully for good. To be honest, I was not happy about having a conversation about death at the age of 30 and thinking about leaving my twin children alone and leaving my love ones. I also felt I had so much more to complete before I exit this world so I decided it was time to do what I had to do in order to fight back at lupus and prednisone. I no longer wanted to depend on taking you (prednisone). I did what the doctor asked of me and I went the extra mile. I started excising and running in the park on weekends because I am a full time employee and a full time single mom. I stayed on 20mg of prednisone for about 2 months. When I returned to the doctor for my blood results, to my surprise my blood work showed great improvement. I was lowered to 10mg of prednisone then the following 4 weeks I was lowered to 7.5mg of prednisone after the 7.5mg I would have to continue to work my way down to 5mg and then 2.5mg of prednisone and finally after 10 days of 2.5mg I would be free of the medication that has caused so much internal damage to my body. I was lowered because I had been taking prednisone for many years and my body would have gone through a massive withdrawal episode if I would have stopped the prednisone instantly.
I am not sorry that it has to end prednisone. I am excited to see what life has in store for me. You have held me captive in my own body for many years. You took over my well being mentally, emotionally as well as physically. From the suicidal thoughts to the uncontrollable mood swings last but not least the extreme amount of unnecessary weight gain. Eating an extreme amount of sweets is now a thing of the past. I will no longer need you and that’s the best part of this break up. Although we have been together for almost 12 years you have helped ease pain but never fully removed the pain caused by lupus, it is best we end this relationship sooner than later. Prednisone we are told as patients that you are suppose to help us with what we are experiencing but instead you do just the opposite. The many sleepless nights are over. The thoughts of isolation and pushing my love ones out of my life is completely over. Prednisone this will be the best goodbye I have ever had to experience. I have been able to sleep better, think clear positive thoughts along with losing weight. This is goodbye and I am hoping it is forever.
Prednisone you are a mind controlling, causing depression and sleepless nights, over eating medication whom I like to call “a bully in a bottle”. I would eat when I was not hungry. I would stay up at night. I would feel lazy, tired and worthless on a daily basis all because of medication that was so called suppose to help me. I now have much more energy. I feel alive. I feel wonderful. I feel as though I am a new being all because the meds are now slowly exiting my system and my body is learning how to function on its own without the assistance of Prednisone. I no longer have suicidal thoughts. I no longer feel worthless. I no longer eat unnecessary food as well as meals. I no longer stay up at night crying uncontrollably over things I cannot change. I am alive and well. This is as close to normal as I will ever get and I am forever thankful. Knowing that Lupus will never leave my body also knowing that I am now free from your captivity is enough for me. I lived as a prisoner for far too long and I am now free, so prednisone this is goodbye hopefully forever.
I would like to take this time to thank my love ones who stayed around and helped me in my time of need. My support system is strong and if not for you guys, I do not know where I would be. To my twin children, you have no idea how much you have helped me day in and day out. I love you beyond what meets the eye. To my mother, I thank you from the bottom of my heart for understanding that it was not me “it’s the medication” as you would say, I love you. To my best friend, my love for you is ever lasting no amount of words can express my gratitude for you. To my sister’s, I would like to say every one of you handled me with care and I thank each and every one of you, I love you all dearly. I decided to write you this letter because I wanted my love ones to understand the silent battle and prison I have been in for many years and hopefully my letter can help set someone else free. I am stronger than you prednisone. You tried to break me and did just the opposite you built a strong, will not stop at anything women who will not be defeated by anything not even a mind controlling bully in pill form. I am looking forward to my new life without you.
P.S. I am not sorry it had to end.
Lupus is an unpredictable invisible illness. Living with this invisible illness can be very frustrating but rest assured it can be done. Everyday will be different. Just because you have Lupus does not mean you cannot live a normal life. There are many ways to cope with living with this chronic illness. Deciding to have a positive attitude should be your first step and main goal when coping with any illness. Living with Lupus can be very stressful to those who may not be able to handle sudden change. It can be very aggressive at times and very mild at other times. Do not sit around feeling sorry for yourself. I repeat “Do not sit around feeling sorry for yourself“. That is only going to cause your Lupus to flare and become worse. Any emotional stress will be very detrimental to your health and over all well being while dealing with this illness. Stress is your worst enemy! Try your best to spend your time engaging in whatever bring you joy. Unfortunately there is no cure for Lupus. That does not mean it is the end for you. Having hope and believing that you can make it through your daily life will place you one step closer to beating Lupus mentally. Get moving, workout at home. Any movement will help your joints and muscles it will also help your immune system. Get active! Join a gym it will benefit your body in many ways, take swimming lessons, aqua therapy is great in aiding with muscle and joint pain. Try to get active out doors ride a bike or even go for a run/jog.
Working with your doctor is substantial when it comes to living with Lupus. Understand that keeping track of your symptoms, pain levels, medication regimens, side effects and flares will help you understand what can and cannot be done while living with Lupus. Keeping a strict medication routine can help minimize Lupus flares. Lupus flares can be anything that prevents you from accomplishing your daily activities. No matter what kind of flare, keep track and you will have a better understanding of what your body can and cannot handle.
Joining a support group in your community can also be very beneficial to you. Knowing that there are others who are battling a similar battle to yours can really help, when it comes to emotional support. If you are home bound due to this illness you can join an online support community group. Take time to research what Lupus is and ways to mange while living with Lupus, so you will have an idea of what you now have to deal with for the rest of your life. The better educated you are on your illness, the better you will be able to handle what you have to deal with daily. Become proactive when it comes to what you are facing. When finding out that you have a chronic illness you may feel many emotions but be brave and know this is not the end of your life, it is the beginning of your new life moving forward. Life may never be the same because of Lupus but it does not have to be dreadful.
There is no cure for Lupus. A chronic illness such as Lupus can be tamed by prescription drugs. Living with Lupus is an unpredictable and frustrating challenge. Your life is already extremely busy, now just think about adding another duty to your todo list for the rest of your life. The thought of taking anti-inflammatory and corticosteroids daily to control Lupus can become stressful from time to time. Just getting out of bed is an extremely difficult task when living with lupus.
Types of medications
- Steriods– Prednisone is a very common steriod that is used to treat an autoimmune disease such as Lupus. Steriods in creme form or tablet are very effective for mild or moderate features of lupus. Some rheumatologist will prescribe a high dose of this corticosteroid for a short period of time and soon after reduce its dose. These steriods can control lupus for some time however they can not cure any form of Lupus.
- Acetaminophen– A very recognized Acetaminophen is Tylenol. Tylenol is used to reduce fevers and subdue pain. Nonsteroidal anti-inflammatory drugs (NSAIDs), for instance aspirin and ibuprofen can not reduce swelling, but are less likely to start off stomach upset and other side effects. In a case of a mild Lupus flare up a doctor may require a patient to take acetaminophen to minimize any pain. A doctor can prescribed acetaminophen’s depending on the required dose .
- Immunosuppressive– Immunosuppressive are medications that partially or completely suppresses the immune system response to foreign body invations. Azathioprine (Imuran), Mycophenolate mofetil (Cellcept),Cyclosporine (Neoral, Sandimmune, Gengraf), Methotrexate (Rheumatrex), Leflunomide (Arava), Cyclophosphamide (Cytoxan), Chlorambucil (Leukeran), Nitrogen mustard (Mustargen) are all immunosuppressive medications. Immunosuppressive can be given to patients in pill form, weekly injections or by intravenous (IV) pulse therapy (injection given monthly). Immunosuppressive medications are used to control more serious Lupus activity that affects major organs, including the kidney, brain, cardiovascular system, and lungs.
- Antimalarial– Antimalarial drugs such as Hydroxychloroquine (Plaquenil), Chloroquine (Aralen), Quinacrine (Atabrine) are used for controlling Lupus. Some Lupus patients will be on antimalarial for the rest of their lives. Anti-malarial medications have improved muscle and joint pain, skin rashes, pericarditis (inflammation of the lining of the heart), pleuritis (inflammation of the lining of the lung), and other lupus symptoms such as fatigue and fever. These medications may also prevent lupus from spreading to certain organs, such as the kidney and central nervous system (your brain and spinal cord) and may help to reduce flares by as much as 50%.
- Dehydroepiandrosterone– DHEA (dehydroepiandrosterone) is a hormone that is sufficient in treating some lupus symptoms. Dehydroepiandrosterone has not been approved by the FDA in treating Lupus However DHEA has been very beneficial in assisting with hair loss (alopecia), joint pain, fatigue, and cognitive dysfunction (difficulty thinking, memory loss, distractibility, difficulty in multitasking). Acne, facial hair growth, oily skin, and excessive sweating are all side effects of DHEA. In addition, DHEA can lowers HDLs (“good” cholesterol) in some women. It can also increase estrogen levels in postmenopausal women, so it is important for women in this category to obtain routine cancer surveillance (mammograms, PAP smears).
All of the above medications can and will help anyone suffering from daily mild to severe Lupus flare ups. Along with these prescription and non prescription drugs it is proven that people who exercise while living with lupus build better muscle, have wee joint stiffness and controlled fatigue. A daily workout has been also proven to help with preventing weight gain. Prior to starting your physical routine please be sure to consult with your physician. Although working out is encouraged be mindful that some movements can be harmful to swollen joint and may cause muscle pain. There is hope for anyone living with Lupus.
Imagine living with an illness that flares up daily without any warnings? How about not being able to sleep at night due to severe bone and joint pains? What about enduring an extreme amount of pain on the inside and can’t express it to others?
Enjoying the sun has become a thing of the pass due to sunlight sensitivity. Imagine having lesions on your scalp that may lead to hair lost. These are just a few of the battles someone with Lupus encounters daily.
Lupus is a chronic autoimmune disease. It effects many areas of the body. The cause of this silent illness also known as the great mimicker is unknown. It’s symptoms come and go often. There is no cure for Lupus however researchers are hard at work trying to solve this cruel chronic mystery. There are four types of lupus,
The immune system is the body’s defense mechanism which is designed to protect the body from germs and viruses. Lupus causes the body’s immune system to attack itself. This autoimmune disease causes its defense army to attack healthy tissues and cells instead of destroying the unwanted invaders. In this case you will then experience joint pain, muscle tenderness and inflammation. The most terrifying characteristics of Lupus are its mimicking symptoms. Symptoms range and vary drastically from person to person. No two Lupus patients will have the same symptoms. Someone may have lesions on the neck and arms followed by arthritis. While someone else can encounter internal damage to important body organs. On the other hand there may be someone who’s Lupus only targets their mouth and causes severe tooth decay and extreme dry mouth.
It is common for Lupus to affects women ages 15-45 years. Did you know that Lupus is more common in African American and Native American women than in Caucasians, Asians and Hispanic women? It is a fact that majority of patients are woman. Men should be aware that they too can become diagnosed with Lupus.
Lupus is a very complex illness. We understand everyday is a battle, but with each new day come the strength and courage to fight back and live a very hopeful lifestyle all while battling this cruel mystery. Do not become discourage because you have Lupus. There is hope for women and men who are living with Lupus.
Many people have limited to no knowledge on Lupus. Lupus is a very unpredictable chronic disorder. There are four types of Lupus, Systemic Lupus Erythematosus, Discoid Lupus, Drug-Induced Lupus and Neonatal Lupus. Lupus is very common in woman, but can be found in men as well. Lupus causes mild to severe pain in women and men daily.
The most familiar form of Lupus is Systemic lupus erythematosus, commonly known as SLE. SLE is notorius for causing a special facial rash called the malar rash also known as “the butterfly rash” located across the nose bridge and cheeks. The exposure to sunlight causes the rash to become irritated, red and painful. Systemic lupus erythematosus (SLE) is when the body’s immune system wrongfully attacks healthy tissues and cells. SLE affects the skin, joints, kidneys, brain, and many other bodily organs. Experiencing oral complications such as extreme dry mouth, severe tooth decay and ulcers are all apart of a lupus flare. Many Lupus carriers develop arthritis, which causes the joints of the fingers, hands, wrists, and knees to become affected.
Common SLE symptoms
• Malar rash “Butterfly rash”
• General discomfort, uneasiness, or ill feeling (malaise)
• Painful or swollen joints and muscle pain
• Unexplained fever
• Chest pain upon deep breathing
• Unusual loss of hair
• Pale or purple fingers or toes from cold or stress (Raynaud’s phenomenon)
• Swelling (edema) in legs or around eyes
• Mouth ulcers
• Swollen glands
• Extreme fatigue
• Mouth sores
• Sensitivity to sunlight
• Swollen lymph nodes
Discoid Lupus (CUTANEOUS) only affects the skin. This type of Lupus causes rashes and/or lesions, these rashes and/or lesions can appear anywhere on the body but are most commonly found on the face, neck and scalp. Lesions and rashes on the scalp may lead to hair lost. Many people who are diagnosed with Discoid Lupus develops SLE over time.
Discoid Lupus Symptoms
- Lesions can appear anywhere on the body but commonly on the face, neck and scalp
Drug-Induced Lupus (DIL) Occurs in result to certain prescription drugs. Symptoms that occur during DIL are extremely similar to SLE symptoms. The pain caused by these medications that causes DIL vanish once the medication is discontinued. The symptoms are usually completely gone within 6 months however the Antinuclear Antibody (ANA) test (used to help detect lupus) may show positive for years after the symptoms are gone.
Neonatal Lupus This form of lupus is very rare. In this case infants are affected by this form of lupus, which is found in newborns whose mother’s have been diagnosed with lupus. An infant who has Neonatal Lupus will have skin rashes followed by anemia. In some cases there have been infants who will have been faced with liver problems and mild to severe heart defects. Always looking on the bright side of this form of Lupus there are no permanent damages to any of the infants and the symptoms go away in a few months.
Neonatal Lupus Symptoms
- Skin rashes
- Affects the liver
- Some cases serious heart defect