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Random Rants of a Lupie Lady
|Posted on February 16, 2014 at 8:49 PM||comments ()|
IS IT FUNNY???....OR NOT???
I am just sick...no...SICK AND TIRED of folks jumping on tangents about stuff that THEY in fact DO!!!! O_O I'm confused!!!!
I'm gonna give you two perspectives. And this is not necessarily for your opinions but as always, feel free to comment at your own risks...LOL (you know I'm trigger happy wit a delete button)
Now I'm a person who loves to laugh. A good joke at the appropriate time will indeed lift my spirits. As a person with multiple chronic illnesses, laughter has been my drug of choice for years! I suggest you get some, because that's a monkey I welcome on errybody's back!!!
Here is the issue. Knowing what to joke about! What is appropriate, and whether or not you are ok to tell or share a joke. Here is the rule, if you are uncomfortable with it, then somebody else will probably be also. But know that even if you are comfortable with it, someone else will probably be uncomfortable anyway. LOL smh
Jokes are typically based on life situations. We talk about what we know. So me being a person with MULTIPLE health issues, I have no problem talking about myself! But am I comfortable with YOU pointing a NEON sign at them...probably not. But I have no problem laughing at myself and invite you to see the humor in my struggle from time to time as well.
There are a lot of pics (memes) out there that we at one time or another have found funny. Some even have received a tear or two on my behalf!!! LOL But here is where I get a little frustrated with people... HOW DO WE PICK AND CHOOSE WHAT IS OK TO LAUGH AT AND WHAT IS NOT???
I see in the media all the time that someone is requesting an apology because someone has offended one group or nationality or disability or another. Why???
And mind you, this is just food for thought...most of you have already stopped reading four paragraphs ago. LOL I'm cool with it. But for those listening get this!!
It's NOT ok to laugh at someone who is blind and a genius, but it is ok to laugh at someone who is follicularly challenged and suffering from Alopecia????
It's NOT ok to laugh at someone who suffers from Down Syndrome and is beautiful, but it is ok to laugh at someone who suffers from Morbid Obesity???
It's NOT ok to laugh at someone who is an amputee and has won Gold Medals in the Olympics, but it is ok to laugh at a dwarfism.
It's NOT ok to laugh at someone in a wheel chair, but it is ok to laugh at someone who is vision impaired and wearing what is perceived as Coke Bottle Glasses.
(Let me knock you down with this last one...I'll wait for you to get it)
It's NOT ok to laugh at someone who is Deaf and Teaching a world, but it is TOTALLY ok to laugh at someone with Tourettes Syndrome translating for the deaf????
Think long and hard about that!!! IS ANY OF IT OK??? IS IT FUNNY...OR NOT???
I'm not hear to scold anyone. I just see what is happening around me and always look for ways to raise awareness and get you to think. Keep laughing, and Keep joking! It is indeed the best medicine. But make sure that you are on the right side of those jokes. Make sure that YOU can say the joke from first hand experience because jokes are life. And most of all, make sure that you aren't being too sensitive about the jokes being told. Most of us living with "differently-abled" abilities don't feel as though we are disabled and will gladly laugh at ourselves and don't need you to defend a joke!!!!
What we do need you to defend is IGNORANCE!!! When someone isn't fair to the differently-abled due to ignorance is when it is absolutely NO LAUGHING MATTER!!! Defend the need for laws to be established for the disabled and understanding to be had by all, not a good joke told in an appropriate fashion.
So when I tell you that people call me in the mornings and think they have the wrong number because my voice is deeper than Barry White's, you would think that was funny because it is!!!! Even though it is due in whole to my disease, #Sjogrens Syndrome and #Lupus, it's still funny!!!! You can laugh at me, but hand me a glass of water!!!...although...watching me eating a cracker with peanut butter on it would be quite amusing...NOT!!!! LOL
I LOVE YOU ALL My little Marionettes!!! And thanks for letting me continue you to STRING you along!!!! - The Soul Stringer <3
#StopWhisperingandYell #ChronicallyAwesome #Lupus #LupusAwareness #Spoonies #SjogrensSyndrome #AutoImmunity #InvisibleIllnesses #Awareness
|Posted on May 22, 2013 at 1:10 PM||comments ()|
Still keeping in mind the mental and emotional ramifications of Lupus, yesterday I posted some Don'ts. Today, let's talk about some DO's that make a difference.
First and foremost...
DO research and learn about our disease. Many still have no clue what lupus is and those that do don't have a clear understanding of all it entails, so do your homework. That will let you loved one know that you are truly concerned about them.
DO share what you have learned with others!!! The only way to raise awareness is through education. You are helping with that every time you talk about Lupus.
DO reach out to your Lupus loves to check on them. Yes it is a two way street, but Lupus patients tend to run and hide when not feeling well.
Do consider the environment when asking patients to accompany you on outings. There are a lot of factors that could derail a good time for a person with Lupus, both expected and unexpected. Consider proper shading for outside events as we are sensitive to the sun. Consider inside temperatures as well and distances for walking to and from the car, stairs, etc.
DO accompany them to their appointments if you can. Dealing with the medical community is very frustrating for patients. Having your support is priceless and can help to keep the patient from being overly stressed.
DO assist them with mundane tasks around the house. Simple gestures can go a long way. Remember that due to pain and fatigue, simple task like washing dishes or vacuuming the floor can be extremely painful and even impossible.
DO remember that our immune systems are highly compromised and most of us take immune suppressing drugs, so...PLEASE KEEP YOUR GERMS TO YOURSELF!!! LOL
I appreciate that colds and viruses are a part of life, but in the life of a Lupus patient, a three day cold can mean at least a couple of weeks worth of downtime and can even cause a Lupus flair that could cause a hospital stay.
DO remember that we are human with feelings and require the same things to survive. We have the same basic essential needs as every other person on the planet. But in addition to that we need an extra dose of consideration, common courtesy, laughter and love just like everybody else...but most of all we need your support.
#PleaseShare #LupusAwareness #stopwhisperingandYELL!!!!
|Posted on May 22, 2013 at 1:04 PM||comments ()|
I have received many favorable responses regarding some of my post on what NOT to do or say to people with Lupus. So I thought it would be a good idea to share them here. I'm sure there is a lot more I could say..but you will certainly get the point. ENJOY!!!
Keeping in mind the mental and emotional ramifications of the effects of Lupus. I think that it is very important to discuss a few of the don'ts when dealing with Lupus patients. YOU DO NOT WANT TO ADD TO THE MENTAL ANGUISH WITH A SLIP OF THE TONGUE!!!! SUPPORT STARTS WITH YOUR MOUTH!!!!
DON'T pretend to understand. Unless you know...you don't. Just be empathetic and sympathetic. Heck...just be supportive!
Don't say..."But you don't look sick." This makes the patient feel as though you don't believe them. There symptoms are internal in many cases and are NOT always visible to the eye. (Although looking well to you is a compliment... deep down it is appreciated but often misunderstood by the patient)
DON'T say...."Maybe you should exercise more!" Having Lupus causes chronic pain and fatigue for many. Yes a healthy diet and exercise are essential for optimal health...but do you really think you are helping when you say that?
DON'T say..."Just don't claim it." I am all for positive thoughts, words, and deeds. But the reality is...when someone is feeling like they have just been run over by a MACK TRUCK...saying don't claim it is NOT realistic. Claim or no claim...every patient knows pain on a very personal level. And need I even mention the affect this could have on someone who has lost a loved one to this horrible disease???
DON'T offer some miracle herb that will "CURE" them of Lupus especially if it involves some pyramid scheme, network marketing, or some radical diet that will be too expensive for the patient to maintain... Sigh...There is currently NO cure for Lupus.
DO NOT...I repeat...DO NOT say..."My ________ died from Lupus." "My ________ had Lupus and they don't have it anymore." or any other comparison to someone else. All Lupus patients have some similar symptoms, but each person is different and their choices of treatment and response to treatment will differ.
#PleaseShare #LupusAwareness #stopwhisperingandYELL!!!
|Posted on January 24, 2013 at 4:52 PM||comments ()|
Isn't it funny how people will act as though they are so encouraged by your efforts to raise awareness about a cause, until you give them the dirty truth!
It is so funny to me how people who don't deal with certain tough aspects of life want you to be silent about them!?! And it has always been that way. It is ok for me to raise awareness about Lupus and other Auto-Immune diseases as long as I am only speaking of survival and living. I should never speak of the sleepless nights, the night sweats, the rashes, the sores, the hair loss, the biopsies, bowel troubles, the tests surgeries and procedures, dating issues, family issues, the stares, the glares, the doubts, the judgement, or the number of people who still lose their lives. Why not?
Now it is true that my main mission, or goal, is to encourage people living with chronic illnesses to live their lives to the fullest. It is also true that I encourage others to continue to dream big, and to do the things that you love. I do this so that we can find a happy place in a very unhappy situation. My words are probably more for those who are experiencing what I am speaking of, because THEY need to know that others understand their plight.
Bu the reality is that many of us endure unbearable pain and discomfort, and THAT is our reality as well. THOSE things need to be talked about as well! How are you really going to raise awareness about anything if you aren't going to share everything that is involved. And how are you really going to be a support to someone else if you don't know what and (what NOT) to do. I will never understand why people are uncomfortable with hearing about things they are NOT personally experiencing.
If I don't talk about the horrible things, how can I encourage someone to live their dreams if they don't feel like I am conquering similar struggles? The problem is, that people are always so worried about your intentions. They think that we talk about things because we want sympathy. That could not be farther from the truth. We talk about things because WE need to! And when we do, we ultimately help someone else dealing with the same thing.
So I type this today to tell my fellow sufferers, "Don't be afraid to speak up!" Silence is indeed NOT golden, because ignorance breeds intolerance!!!!!! What people don't know...can ultimately hurt US.
For the people who inadvertently hear our stories, try to listen. Your listening could help someone dear to you while you learn how to deal with them. And God forbid you ever have to go through what we do yourself, but you will be a lot more informed and maybe even less in the dark about the disease process.
For those who are ultimately turned off by the ugly truth...FREEDOM of CHOICE is a beautiful thing. The choice door swings both ways.
The Soul Stringer
|Posted on December 31, 2012 at 4:32 PM||comments ()|
As the last day of the year rolls through, I want to take this moment to thank all who have and continue to support me in my endeavors.
Please remember that auto-immune diseases come in many forms and are hidden mysteries that continue to take and destroy lives.
Take a moment to remember all of those whose lives were loss this year to this dreadful disease...
Now take another moment to remember all of the Men, Women, and CHILDREN who are still fighting.
Throughout the year I have posted a lot of information about Lupus and other diseases. Many have expressed uneasiness regarding the posts about this illness. I won't apologize for that. My job is NOT to make anyone comfortable with the realities of this disease but to help you to understand them. My job is NOT to seek sympathy for our struggles but empathy "a mutual understanding that is not questioned in order to build a stronger community." My job is to raise awareness. To Educate. To Empower. To Embrace. To Enlighten. To Enlist. To Encourage. To Entertain. I was silent for many years worried about what people might think or feel. I am silent no more.
I recognize that having a talent is not just a privilege, but a huge responsibility. I am therefore, obligated to use my talent as a voice to speak for and to reach those who suffer in silence. In the coming year, I will continue to do my best to stand firm with soldiers that are alongside me. I will increase my efforts to bridge the gaps between mystery and understanding which includes raising much needed funds for care, research, and development!
Until there is a cure, WE ALL will fight!!!!!! Will you fight with me?? Or if I am ever unable, will you fight FOR me??
In 2013, make an effort to support a cause of your choice. Making a difference in others lives starts with each and every one of us. Don't sit back and watch...DO!
All gestures of support are much appreciated. I am asking for your support in whatever form that it may come in. LUV YOU ALL!!!! www.indiegogo.com/butterflysoul
|Posted on November 28, 2012 at 8:30 PM||comments ()|
I can talk all day about the devastation that Lupus can and has caused for so many people. I can because I know first hand.
Did you know that people with Lupus are often overlooked because "They don't look sick"! Many lupus patients suffer in silence because they are not believed to have a major, chronic, FATAL disease because of Lupus characteristics of invisibility. Over 1.6 mllion people worldwide suffer from the symptoms associated with Lupus and many still continue to lose their lives. Please don't wait until Lupus affects you personally to educate yourself and others. Join me in raising awareness. Below are 30 facts that you can share!
Fact 1 - Did you know that often times people with Lupus and other auto-immune diseases are often times juggling paying bills and buying medication? A high percentage of the diagnosed and undiagnosed are unable to work to support themselves and their invisible illness.
Fact 2 - Lupus can range from mild to life threatening, but must always be treated by a licensed health care professional as there is currently NO CURE for Lupus.
Fact 3 - Pain, fatigue, hopelessness, loneliness, depression, anxiety, fear. These are some of the symptoms that go along with having an auto-immune disease. Help me to inspires hope and healing by raising awareness regarding Lupus and other auto-immune related diseases.
Fact 4 - There are four different types of Lupus. One of which is: Systemic Lupus Erythematosus (SLE). Systemic lupus is usually more severe than cutaneous (skin) lupus, and can affect the skin, joints, and almost any organ in the body, including the lungs, kidneys, heart or brain. Approximately 70 percent of lupus cases are systemic. In about half of these cases, a major organ will be affected.
Fact 5 - There are four different types of Lupus. The second type is Cutaneous Lupus and/or Discoid Lupus which predominantly affects the skin. Cutaneous lupus is commonly caused by sun exposure and does not typically cause scarring. Discoid lupus causes scarring which is often times permanent or NOT reversible. Many with this type of Lupus are also affected by systemic Lupus (SLE) which can also affect the major organs in the body, although only a small number of patients are affected this way.
Fact 6 - There are four types of Lupus and the 3rd type is Neonatal Lupus. This type of Lupus is born to babies of mothers with Lupus. This is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect.
Fact 7 - There are four types of lupus and the fourth one is Medically Induced Lupus. This type of Lupus is cause by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.
The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.
Fact 8 - Here are some symptoms associated with Lupus.Symptoms vary from person to person, and may come and go. Almost everyone with SLE has joint pain and swelling. Some develop arthritis. Frequently affected joints are the fingers, hands, wrists, and knees.
Other common symptoms include:
Swollen Lymph nodes
Chest pain when taking a deep breath
Fever with no other cause
General discomfort, uneasiness, or ill feeling (malaise)
Sensitivity to sunlight
Skin rash -- a "butterfly" rash over the cheeks and bridge of the nose affects about half of people with SLE. The rash gets worse in sunlight. The rash may also be widespread.
Fact 9 - Here are some facts for you. Feel free to share, discuss, or ask questions.Lupus is an autoimmune disease that causes inflammation and tissue damage to the body.Lupus is a chronic disease, which means that you
will have lupus for the rest of your life.
Lupus is not contagious. You cannot “catch” it from someone or “give” it to someone.
Lupus is not like or related to cancer.
Lupus is not like or related to HIV or AIDS.
Lupus can cause a skin rashes or achy joints, or can affect organs inside the body.
Lupus is unpredictable. Symptoms can appear, disappear, and change.
Lupus can range from mild to life-threatening and should always be treated by a doctor.
Fact 10 - Because Lupus can affect any organ in the body, it may be necessary to be treated with more than one specialty.A Rhuematologist treats diseases of the joints and muscles.However, if your lupus causes kidney problems, you will also see a nephrologist, a specialist in diseases of the renal system.
If you have rashes or lesions, you will see a dermatologist, who specializes in diseases that affect the skin (including the scalp and the mouth).
Because lupus can cause damage to any part of the body, other specialists may be necessary, such as a cardiologist, who specializes in heart problems, or a neurologist, who specializes in problems that affect the brain and nervous system, or a perinatologist, who specializes in high-risk pregnancies.
Fact 11 - More symptoms associated with Lupus. Brain and nervous system: headaches, numbness, tingling, seizures, vision problems, personality changesDigestive tract: abdominal pain, nausea, and vomitingHeart: abnormal heart rhythms (arrhythmias)Lung: coughing up blood and difficulty breathingSkin: patchy skin color, fingers that change color when cold (Raynaud's phenomenon)
Fact 12 - Because Lupus causes extreme pain and fatigue, it is important as caregivers and supporters to not be judgmental when dealing with loved ones with Lupus. Although in most cases, Lupus is NOT visible to the naked eye, symptoms are very real and can be devastating to patients. It is not all in our heads. We are not lazy. We are still very much human. We are simply coping, surviving, and have often forgotten how to LIVE in the process of surviving. Your love and understanding is essential. Helping to raise awareness shows support and is very appreciated!
Educating yourselves and others raises awareness!
Show your support!
Fact 13 - Lupus can cause cognitive disfunction. Patients with lupus often experience problems with such intellectual functions as remembering things, articulating thoughts, focusing attention to details, making decisions, or manipulating numbers. These impairments may range from mild thought disturbances to more severe confusional states. Even in their mildest forms they can be quite distressing to the patient experiencing them. They may not interfere significantly with the ability to function normally but still be a source of dissatisfaction in the individual’s work and social interactions. Because they are difficult to identify objectively, they can be very frustrating for family and friends, and even the treating physician, to deal with.
Fact 14 - Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Fact 15 - In order to get a clear diagnosis of Lupus there must be laboratory or physical evidence of the disease such as, swollen joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy that shows evidence of the disease.
Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.
The “Eleven Criteria”
Malar rash: butterfly-shaped rash across cheeks and nose
Discoid (skin) rash: raised red patches
Photosensitivity: skin rash as result of unusual reaction to sunlight
Mouth or nose ulcers: usually painless
Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
Neurologic disorder: seizures and/or psychosis
Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
Information pulled from the Lupus Research Institute.
Fact 16 - We live in the healthcare age so their are a lot of products on the market that claim to be safe, natural, and posses the ability to heal several illnesses. Having Lupus means that you have an immune system that is OVER-ACTIVE!!!!! Therefore, please be careful of all natural and holistic remedies that you suggest and/or take. Some contains ingredients that will BOOST the immune system and that is a NO-NO for someone with an already overly active immune system. Always take the advice of a licensed healthcare practitioner when making non-medical decisions about your care as some natural remedies, vitamins, etc. can also have a negative effect on the prescription meds that you take along with them. Please notify your healthcare providers of any prescribed and non-prescribed medications and/or supplements that you are taking.
Fact 17 - There is a common misconceptions that Lupus is a woman's disease. Although women between the ages of 15 and 45 account for 90% of diagnosis, Lupus can and does effect men, women, and children of any age. Men usually have a more severe case of the disease and a higher rate of the following issues:
Pluerisy, Renal disease, Renal failure, seizures, Discoid Lupus including subacute cutaneous Lupus, Thrombocytopenia, Hemolytic Anemia, and Lupus anticoagulant which causes abnormal clotting of the blood.
Fact 18 - Many Lupus patients suffer with chest pain upon deep breathing. This is caused by inflammation of the lining of the chest cavity. This occurrence is called Pluerisy. Patients who experience chest pain should notify their doctor to determine if the pain is indeed Pluerisy as it could lead to other complications including difficulty breathing and even a collapsed lung.
Fact 19 - Lupus can also cause an increased risk of blood issues including anemia, low blood count; thrombosis, clotting issues; or vasculities, inflammation of the blood vessel walls. Because of these issues, tissue, cell, organ, and even bone death can occur. A doctor called a hemotologist is a doctor who specializes in disorders of the blood.
Fact 20 - As mentioned in the previous fact, many Lupus patients deal with a complication called vasculitis which is inflammation of the blood vessels. As a result of this inflammation, improper blood flow through the blood vessels can lead to inadequate flow to the bones causing avascular necrosis. This improper blood flow can also weaken the blood vessel walls causing bulging which leads to rupture or anuerysms. Regular assessment by a licensed medical practitioner and blood testing is essential for detecting some of the complications of Lupus.
Fact 21 - A common treatment for Lupus is steroids, or Predisone. Common side effects are: Difficulty controlling emotions, mood swings, increased appetite, weight gain, difficulty maintaining train of thought and psychological symptoms including depression, mania, and psychosis, unusual fatigue and weakness, mental confusion or indecisiveness, blurred vision, abdominal pain including peptic ulcer, painful hips and shoulders, and infections. These are only some of the major side effects associated with steroid treatment. Please be sure to discuss these symptoms with a licensed health care provider.
Fact 22 - Isolation and depression are common amongst people with Lupus. Feeling sick and tired of being "sick" and "tired" is a common feeling. Many feel like no one will ever know how they are really feeling or ever understand that they look fine and feel like death itself. That being said. It is very important to be extremely gentle and supportive of those that we know with Lupus and other auto-immune diseases. Make sure you are there for them...whether you believe them or not...because many don't feel believed, and are often stuck in between an actual diagnosis. Always remember, they are still human...and have the same wants needs dreams and desires as you do. We are sick....but certainly NOT DEAD!
Fact 23 - Did you know that there are several celebrities that are also suffering with Lupus. Toni Braxton has Lupus along with Snoop Dogg's daughter, and Tichina Arnold's sister. Nick Cannon suffers with Lupus Nephritis which directly affects the kidneys and Seal has Discoid Lupus that directly affects the skin and is the reason for the scarring on his face. Rapper Trick Daddy also has discoid Lupus.
Fact 24 - Children can and are also affected by Lupus. Lupus in children is the same disease as Lupus in adults, but usually children have been ill for a much longer period before the diagnosis is made. Because they have been ill longer before a diagnosis is made, they typically have to start a much more aggressive form of treatment as they may have significant organ involvement.
Fact 25 - Although treatment for Lupus may vary among patients, the goal of treatment is to minimize the symptoms as there is currently NO CURE for Lupus or any other auto-immune disease. Treatment is based on the severity of the disease. Common treatments include, but are not limited too, non steroidal anti-inflammatory drugs (NSAIDS), Antimalarials, Corticosteroids, Immune suppresants including Cytoxans, and chemotherapies. Along with these treatments comes risks and side effects. Therefore, benefits and risks must be weighed and discussed with your doctor.
Fact 26 - Although there are no clear studies to prove that Lupus is hereditary, there has been studies to suggest that various auto-immune diseases can be found in the same family due to a person being more susceptible as opposed to predisposed to auto-immune disease. There are more than 80 different auto-immune diseases including insulin dependent diabetes. In my personal family is:
1. Rhuematoid Arthritis - bone involvement
2. Sarcoidoses - Lung involvement
3. Polymiositis - Muscle involvement (heart is a muscle)
4. Sjogren's Syndrome - (salivary and moisture producing glands)
5. Reynaud's Phenomenon - poor circulation
6. Idiopathic Thrombocytopenia Purpura (ITP) - affects the blood platelets
7. Lupus (SLE) - systemic lupus affects the entire body
8. Hashimoto's diseases - thyroid involvement
Fact 27 - Auto-immune diseases are diseases in which the immune system malfuctions. The immune system is your personal army in your body that keeps foreign invaders (sickness and disease) from overtaking your land (your body). Auto-immune diseases are when the army does not recognize it's own soil or territory. Firing friendly fire to anything that moves. Because of this, the land is overcome by this friendly fire and large territories can be loss. Does this explanation help you to understand auto-immune diseases? There are over 80 listed diseases classified as auto-immune including Lupus. Learn them and their symptoms so that you can be aware.
Fact 28 - Although there is NO Cure for Lupus and other Auto-Immune diseases, there have been great strides in the treatment of symptoms for them. Many are living longer lives and are able to put their diseases into remission with early diagnosis. Many go on to lead productive lives and are living their dreams. Don't be afraid to challenge your medical team to get a clear diagnosis if your are suffering with unexplained symptoms of any kind. Do your research and ask questions. Write your questions down BEFORE you get in the doctor's office. Keep a diary or log of symptoms and their duration so that you can give your physician a clearer picture of what is going on. It may take time, but you will be one step closer to helping yourself and them to get a better understanding of how these diseases operate.
Fact 29 - Two thirds of patients with lupus are extremely sensitive to ultra violet rays either from the sun or from inside florescent lighting. Whether you are sensitive or not, you should be sure to protect yourself from UVA and UVB rays. When going outside you should be sure to protect your skin with a sunblock of at least a SPF of 30 or greater. Make sure to hit areas that are more sensitive to the sun like the nose, neck, cheeks and ears. Wear a wide brimmed hat and long sleeves if necessary. Remember that UVB rays are highest between 10am and 4pm. Also remember that rays are higher at higher altitudes and can even be reflected off of snow and water. For those sensitive to indoor lighting, be careful of the lighting in stores and offices. You can purchase light shields for bulbs but be sure to get shields with a Nanometer of 380 to 400. This will protect from UVB and UVC rays which are particular damaging to skin cells.
Fact 30 - I want to remind you that Lupus is a very REAL disease that continues to take lives. I personally am living with Systemic Lupus Erythematosus (SLE), Sjogren's Syndrome, Fibromyalgia, Reynaud's, Billiary Cirrhosis of the Liver, Restrictive Lung Disease, and a rare Non-Hodgkins Lymphoma (cancer) and a host of other co-morbidities. I live a life of chronic pain and fatigue.I am NOT telling you this for you to pity me, or to evoke tears and sorrow. I am telling you so that you know WHY I choose to raise awareness about auto-immune diseases like Lupus. As you can see...it DIRECTLY affects me and those that love me. It is important to me that despite all the things listed here, that you all understand how important it is for people to understand that I am NOT just alive. I am living. As a living human being, I have DREAMS, GOALS, and ASPIRATIONS. My goal is to encourage everyone breathing to LIVE your dreams no matter what might be a speed bump is this game called life. Yes it is EXTREMELY painful to play the violin. But as long as I am breathing, my dream is to use that piece of wood as a voice to ASPIRE to INSPIRE before I EXPIRE!
* Although some of the facts listed here are very personal, the majority of the facts listed here were taken from The Lupus Foundation of America's website at www.lupus.org
|Posted on October 9, 2012 at 3:37 PM||comments ()|
Living with a chronic illness sure can be tricky.
We have to be the masters of disguise and living with Lupus, which is the master at being invisible, a good disguise I have always worn.
I can't tell you the last time I had a day WITHOUT pain.
This disguise I wear, with hopes of encouraging others to continue to fight this war against Lupus.
Surviving in today's economy is tough on everyone...but living with this disease presents challenges I never thought I would ever face.
Being a single mother of two, a full time musician, and a Spokeswarrior for Lupus keeps me more financially and physically broken now more than ever!
But it is not just about me anymore. It is so much bigger than I am...so I can NEVER give up.
Trying to make it in the music industry is tough enough even for a healthy person. There is a huge investment of both time and money. Having a disability presents its own unique challenges to that.
However, this has been my dream since I can remember. It gives me great joy to be able to light a pathway for so many. Music is that universal language that can break through even the strongest of barriers.
I knew when I started that this was gonna be incredibly difficult. I was not naive to think that my path would be any easier, or that someone was gonna grab hold of me and say, "oh poor sick one...let me take care of that for you!" This is the REAL world and I have and am learning to survive everyday in it! That does not mean that along my journey I won't need help and assistance.
Who wants to be viewed as looking for a handout when they are asking for help. This was the hardest lesson I think I have had to learn thus far. It is difficult for an independent person to solicit help from others. As a single mother, I have learned to survive on the smallest amounts and to make a happy home in the process of doing without. But I have had to learn while dealing with Lupus, that sometimes you are just gonna have to ask for help.
The sad reality is that you may not always get it...even when you so desperately need it. In the process of wearing that disguise and trying to appear normal...that is exactly what people will think you are...."normal". So asking for help can sometimes be a chore when no one thinks their help is really needed by you.
My fear has always been that people will think that I don't work hard enough on my own. Or that I would appear too needy and too lazy to get out and do things on my own. Trying to survive in the musical arena has definitely taught me a thing or two about how lazy I am NOT!!! LOL
The truth of the matter is: IT TAKES TEAMWORK TO MAKE ANYBODY'S DREAMS WORK!!!!!! No one ever made it anywhere in life without SOMEONE's help! So in this lesson I learned that not only am I going to have to ask for help with my physical endeavors, I am going to have to ask for help with my musical endeavors as well. And that inevitably means help financially.
In order for me to be that voice of courage, strength, hope, endurance, faith and all the things needed to survive life both with and without a disability, I am going to have to ask for everyone's help. So I come to you with a humble heart...asking for your help in making my first solo project a reality. This project is so much more than just a disc full of music. It is a sacrificed piece of my life. It is a disc full of hope. A hope that not only will people hear it and find joy, but also that people will hear the message. The message that awareness is still needed regarding Lupus and other auto-immune diseases. A disease that millions of people are affected by, still die from, and there is still NO CURE at this time.
So please help share in this great cause that will open the door for many more possibilities to come. Opening the door for many other possibilities to raise much needed funds and awareness in your specific areas. An opportunity to bring Jazzin 4 Lupus to life. A venture that will bring music and awareness to every city, every state, and every country on the planet. A venture that will raise much needed funds to help the one who truly need it in YOUR area as well as mine.
So please....Surviving in the REAL WORLD takes the helping hand of everyone as NO ONE can make it in this world without SOMEONE'S help. Give your self the gratifying feeling of knowing that you made a difference in this world...The REAL WORLD!
Thank you all!
The Soul Stringer
|Posted on September 7, 2012 at 1:29 AM||comments ()|
Today I am going to talk to you about isolation. Although there are different types of isolation, I want to talk today about psychological isolation. This would be the failure of an individual to maintain contact with others or genuine communication where interaction with others persists. When a person has a chronic or invisible illness, isolation can be a normal coping mechanism for some, but is not necessarily a good idea. When you have a chronic illness, support is an absolute necessity.
Let me elaborate. When you have an invisible illness, you already feel isolated. You feel like no one could or will ever understand your plight. You feel like you are always feeling horrible and literally cringe at the thought of someone asking you how you are feeling. You feel like the easiest answer is to be alone because no one wants to be or be with a Debbie Downer.
This conversation today comes from a deep dark place of concern because I want all of you to understand the importance of being supportive and allowing support on the part of both caregivers and patients. This is important because what often comes along with chronic illnesses is depression and feelings of hopelessness. Depression is a serious thing and is often looked at as a weakness and not an illness. Everyone deals with struggles in their lives but not everyone has the same support systems, or tools to cope with their struggles. Not to mention, when you are clinically depressed, their may need to be medical intervention.
Depression is real and comes with a lot of symptoms that can go unnoticed. Education is key so that we can recognize the symptoms when they are present. What some don't know about depression, is that is does not always mean that someone is down in the dumps, or constantly sad. It can also mean moments of over thinking, or racing thoughts that can't be quieted. Feelings of having a lot to do, but far too overwhelmed to complete a task can be ever so present. Other times it can be simply being extremely hyper or manic or very tired, but unable to sleep. Yes, insomnia can also be a part of the depression umbrella.
In light of the recent alleged suicide by Hip Hop Mogul Chris Lighty, I felt that it is absolutely imperative that more dialogue transpire regarding depression and suicide. Because depression can play a big part in the lives of the chronically ill, this subject hits home for millions of people in the world. Not to mention, my family was personally struck by the pains of suicide when my older brother reportedly took his own life several years ago.
I have this conversation with you today to shed a little light on a topic that can affect any person regardless of race, gender, or age, because anyone yes even children can experience depression. It is very important that we take another look at how we view mental illnesses as well, as they are too part of a huge umbrella of invisible illnesses that aren't always readily apparent, unless you know the signs.
If you are isolating yourself...please examine the reasons and look for and allow others to support you. And if you know someone that is isolating, make every effort to let them know that you care and are there for them.
The Soul Stringer
|Posted on August 24, 2012 at 9:34 PM||comments ()|
Sitting here after watching one of my favorite tear jerkers, My Sister's Keeper about a family who deals with a child that is terminally ill with Leukemia. This movie is always bitter sweet for me, but got me to thinking differently this time. Although the last 10 minutes of the movie are always the hardest, I always find it painfully humorous. Let me explain why...
At the moment where this beautiful girl is about to pass away, the family is all there telling her to pray her cancer cells away...tell your brain to heal your body...to tell her body to heal it self....think positive thoughts and it will go away. Try some herbal method just shy of flying to the left side of the moon to get the dust from a crater to inhale in the right nostril...smh.
Ok so I exaggerated a little...but I am always angry at this point because it reminds me of my own personal struggles. Living with Lupus, Sjogren's, Fibromyalgia, Lymphoma (cancer), liver issues, digestive issues, skin issues, nerve issues, blah blah blah!!! I always want to scream at the TV and people that offer "simple" remedies or unconventional cures..."DON'T YOU THINK IF IT WERE THAT SIMPLE...NOBODY WOULD EVER GET OR BE SICK!!!!!!!!!
And when she passes on later that night, I'm sad and thinking...did her family think she was a failure, lacked faith, didn't pray hard enough, or just wanted attention? Is that what my own friends and family think? Well tonight I had an epiphany. I can't tell you how many times I have secretly shed tears of hurt and frustration over my closest friends who I know love me unconditionally, offering me unsolicited advice about how to "CURE" myself. I can't tell you how many times I thought," they just don't get it". But honestly, I was the one who didn't get it.
And let me first and foremost apologize to everyone who supports me and has been there with me through many struggles known and unknown. While I have been on my crusade to educate, enlighten, encourage, and evoke empathy not sympathy... I forgot that chronic, terminal, and invisible diseases are hard to deal with and understand, not just for me, or anyone else living with them, but for those who live with and love us, and often lose us as well. Denial works both ways...the pain works both ways...and therefore the understanding has to work both ways. I forgot to understand that no one wants to imagine terrible things, pain, and especially death. So how can I expect for people to understand what I go through?
I know tons of people with similiar struggles and although we have an idea of what we all go through...no two people will ever suffer or survive the same. How can I tell people to understand, when I can't understand their pain of watching...wishing they could take it away, pray it away, or even fight for me. They are as deep in a pit of pain and confusion, as I am.
So I want to give a special shout out to caregivers, friends, and families of anyone living with unique colors in their rainbows. Let's open the dialogue so we can understand each other, and not hurt each other with words that neither one of us feels or understands to be insensitive at best. I love you all and would not be able to pursue my dreams, goals, and aspirations without you.
You are very much appreciated and I want you to know that my pursuit of happyness is a door that swings both ways. I want to give as much as I get...and will do better to try to keep the dialogue going and the interchange open. I will do better to explain things and answer any questions regarding my health and my musical journey. They both at this point in my life are one in the same.
It is hard in itself to establish and thrive in the musical arena. It is also very difficult to have a productive and sucessful life. We all have challenges in life, and mine just happen to include many rare, misunderstood, chronic and terminal road blocks. I may have many colors in my rainbow, but like any storm, there is beauty on the other side! I see nothing but great things in the future for my musical journey, and my life journey. Things that I hope will not only add peace and longevity to my life...but also to yours.
Thanks for being in my world and feel free to share with anyone you think would enjoy!
I am The Soul Stringer....and I approve this message!
|Posted on August 23, 2012 at 8:01 AM||comments ()|
So I've finally decided to be a little more verbal about my life. As most of you know, I am living with multiple auto-immune illnesses among other things. Due to the fact that I have not been sleeping much, I've decided to start typing out my thoughts here. With that being said...Welcome to the land of Painsomnia. I am your President. LOL What is Painsomnia? Painsomnia is that place where you are utterly exhausted, perhaps even overly tired, but too tired to fall asleep because you are in far too much pain to relax. Nice right?
Well I've decided to occupy my time NOT staring at the ceiling. I've practiced more hours today than I probably should have, and playing games on the computer are just not that appealing to me right now...neither is the TV. I am listening to some really good music though. Be sure to check out the New Urban Jazz radio station. With their ON-Demand feature, you can listen to good music at your leisure. www.newurbanjazz.com
Now how about a little introduction not currently in my Bio. I have decided to NOT call health challenges illnesses anymore. I am calling them colors. That's right colors of a rainbow. I view it that way because when you are living your life with a chronic illness, you feel like you are in a constant storm of pain and often despair. However, after every storm, the Sun peaks out with a huge smile and a rainbow appears, letting you know that the wheels of time are still turning in your favor and you have defeated the challenges of another day.
Let me tell you about the unique colors in my rainbow...
My name is JoAnna, but I am affectionately known as "The Soul Stringer". I am a violinist and causal musician and I use my talent to not only encourage, but also to raise awareness about my very personal struggles with my health.
I have been currently diagnosed with the following labels...
Systemic Lupus Erythematosus (SLE), and Sjogren’s Syndrome, which are both auto-immune diseases that affect the body’s ability to distinguish healthy tissue and cells from foreign invaders. These illnesses cause a decreased function of the moisture producing glands in the body, arthritis, widespread joint and muscle pain and can cause damage to any organ in the body namely the brain, heart, kidneys, liver and skin. I also have chronic Fibromyalgia, which is also categorized as having widespread pain and debilitating fatigue and can cause death. In addition, I suffer with a rare Non-Hodgkin’s Lymphoma called Cutaneous T-Cell Lymphoma (CTCL). This is a type of cancer affecting the lymphocytes, which coincides with the immune system. Along with these major illnesses, I have several co-morbidities that include chronic migraines, neuropathy, hypoglycemia, inflammation in and throughout the gastrointestinal system, Reynauds, and Biliary Cirrhosis of the Liver caused by auto-immune disease. Is that enough for you for now????? Sheesh!
I will be back to explain and talk about things as I think of them. I will also share my writings from time to time. If you have any questions...JUST ASK!!! Nothing is off limits!
Tired of typing soooooo.....gentle hugs to everyone!!!!