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Purple With A Purpose

May 11, 2015

May 15th is Lupus Awareness Day, a day to celebrate life and take a stand against the wolf. Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize.

The Lupus Foundation of America started a fun way to show your support and raise awareness by putting on purple and sharing your lupus story. Their tumblr shows everyone from Panera Bread employees to Roscoe the dog to a Teletubby wearing purple in support of those living with lupus. It’s a way to make a serious disease less daunting and encourage people to speak out about the invisible disease. Here are a couple fun ways to wear purple with a purpose:

  1. Make it a family affair by dressing the kids in purple and having a photo shoot.
  1. Find a person on the street that is also wearing purple. Ask them if they’re doing it for Lupus Awareness and then snap a picture with them.
  1. Slip into your favorite purple outfit and set the stage for a selfie shoot.
  1. Treat yourself to a lavender mani/pedi.
  1. If you’re feeling brave, let the kids paint your face purple…and then their own.

 

If you don’t have anything purple to wear, you might be able to find something on Goodshop.com. They have donated thousands of dollars to lupus research because people like you have shopped through their website at stores like, Neiman Marcus, Kohl’s, and Lands’ Endt. Signup and select one of their 24 lupus research foundations, like The Lupus Foundation of America or The Alliance for Lupus Research and they’ll donate up to 20% of any purchase you make online to help find a cure for lupus.

Thank you to guest blogger Valerie Greene for writing this post! Valerie Greene is passionate about spreading awareness about Lupus because it is a cause close to her heart. She has devoted her life to fundraising for nonprofits to help make an impact on the world. Purple is also her favorite color. 

 

The following post is a guest article written by Ruby Andrew. Ruby Andrew lives in Bristol, UK and is an avid reader and blogger. Since her early years she’s had a passion for writing. Her articles have been published in leading UK newspapers. Her areas of interest are food, reviews (Book/Movie), Travel, Fashion, Lifestyle, Fitness and Health. She works as a guest blogger on her chosen areas of interest and currently writes on behalf of EHIC card. 

Say “Hello” to Ruby Andrew

Systemic lupus is called “the disease with a thousand faces” in light of the disease affecting almost any organ of the body, and the symptoms resembling that of many other diseases. A condition in which the body isn’t processing enough red platelets; manifestations can extend from throbbing joints, fever, joint pain, exhaustion, skin rashes, and frailty. Lupus is a life-long battle full of the ups and downs and the uncertainty of how the disease can affect your life as well as the life of your loved ones. Caring for loved ones who suffer from Lupus is the biggest challenge in the life of the caretaker, as they need to cope with the physical and emotional sufferings of their loved one.Here are the few tips on how to take the best care of your loved ones with Lupus and how to safeguard the health of yourself.

1. Learn About Lupus

Lupus is a ceaseless, immune system sickness that influences nearly 1.5 million Americans. As information is a powerful tool, knowing the information about Lupus helps you to take better care of your loved ones.

2. Learn Early Warning Signals Of Lupus

As one might expect, the cautioning signs vary for every individual. Signs can incorporate hair diminishing, expanded joint torment, expanded exhaustion, and raised body temperatures. Signs and symptoms will vary patient to patient.

 3. Give Them Emotional Support

Besides the physical symptoms, Lupus profoundly affects a person emotionally well as.

Now it’s the time for the caretakers to build positive support for the people who are suffering from lupus.

4.Educate About Nutritious Diet

Learn with your loved one the best diet for their illness.

5. Take a Break from Lupus

Ask your loved one how they are feeling. Both the caretaker and the patient need to take a break from Lupus and enjoy themselves.

It’s not simple having lupus and it’s not simple being a guardian of a friend or a family member with lupus, on the grounds that you must be prepared for anything at whatever time. There are many help and supportive networks accessible to patients and family of individuals with lupus.

 

The following is a guest post by my friend Jenna Rader. I am excited to have Jenna’s leap into the blogging world here on Raising Inspiration. She has such a wonderful spirit and I know that you will enjoy her writing as much as I do! Show her some love! 

At nearly seventy years of age, my mother underwent her third hip replacement surgery on the same joint. The surgeon botched the first surgery by inserting an oversized apparatus. Several months later, when she was still unable to walk and one leg was an inch longer than the other, the doctors finally admitted the mistake and scheduled another replacement surgery.

After the second surgery and several more months of pain and inability to walk, my mother discovered that the second hip replacement apparatus had been recalled by the manufacturer due to reports of severe allergic reactions in patients.  In the third surgery, the doctor reported that the site where the apparatus was located was covered with tumors. Not only was her hip-joint replaced for a third time, reconstruction was conducted on much of the tissue.

Upon awakening from this third surgery, my mother, still groggy from anesthetic, asked the nurse’s aide if she knew about the Bible App that she could access on her phone. She tried to download it for her and when she was unable to, I received the following text:

Text Message

 

Rather than being bitter and angry from the numerous surgeries, the inability to walk for nearly three years and the trauma that has been caused to her body through no fault of her own, my mother continually chooses a good attitude and possesses a beautiful godly spirit. She always shares God’s love with others.

She may never be able to walk without help again. I know that she will continue to have joy and spread God’s blessings no matter the circumstance.

Paul, writing from prison, possessed this same attitude – an attitude of joy because of the grace and love that God has bestowed upon his children. “I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all things through him who gives me strength.” Philippians 4:12-13

This kind of joy is not a human-based happiness or an emotion that comes and goes. True joy is divine in origin and emanates from the grace of God. It is a spirit-given expression of God’s grace that flourishes best in hard times. It is a timeless joy that flows out of people directly from God.

And I want to be just like that.

 

The following is a guest post by Mandy Karo. I first met Mandy in college when we both joined Pi Zeta Phi during college. After hearing about my diagnosis Mandy reached out to me as she is also living with Lupus. I am so thrilled to have her share her story. She has wonderful insight, show her some love! 

Middle school is a tough time for most kids. When I was in eighth grade, I was in the midst of a very difficult transition with my two best friends. We had been inseparable in fifth, sixth, and seventh grade. I remember the gym teacher saying weMandy's guest post were “joined at the hip.” But in eighth grade, they were drifting away from me and becoming a part of the popular girls group. For a young teen this felt like the ultimate abandonment and rejection. I remember feeling a lot of loneliness, stress, and anger. It was in the middle of this drama that something much worse was piled on to make my teen years even harder. I was diagnosed with Lupus.

I had been having odd symptoms for a while. In sixth grade I started having strange stomach aches. The doctors thought I might have ulcers so I had to have a stomach x-ray. It was awful—the stuff you have to drink so they can x-ray you is disgusting! There were no ulcers found so life went on. In seventh grade I began feeling tired in the afternoons. But what happened in eighth grade was what led to my diagnosis. I started getting purple spots on my feet and ankles, especially when I was upset or stressed out. My feet and ankles would also swell up. At first we thought maybe I was allergic to the laundry detergent my mom used but switching it didn’t help. The worst time was when one of my teachers accidentally ran over my ankle with a TV cart. The purple spots showed up and I got so swollen I couldn’t walk on that foot. It hurt to put shoes on.

When we showed my family doctor the spots, she was perplexed so she looked up what it could be. She named off a number of possibilities and one of them was Lupus. I really had no idea what Lupus was, but I had heard the name before, and I knew it was some sort of serious disease. I started to cry. We were sent to Children’s Hospital in Denver to see a rheumatologist. They did blood work and the doctor asked me a few questions about my symptoms. Then just like that, he told me I had Lupus, gave me some packets about it, and prescribed medications for me to take. It felt odd that it was so quick. Even my parents continued on acting normal. Didn’t they know that I was just diagnosed with an awful, potentially life-threatening disease? Shouldn’t we all be crying or yelling or something? I know that they were just trying not to freak me out. Inside they were scared too.

I’ve been diagnosed with Lupus for thirteen years now. I deal with fatigue, unexplained fever, swollen joints or muscles, sensitivity to the sun, susceptibility to sickness, and the spots (which are called purpura and are caused by bleeding underneath the skin). The medication I take has helped me in controlling the flares. I know I am actually very lucky because many people with Lupus have much worse symptoms, and thankfully my symptoms are not life threatening.

There are a lot of questions that come with having Lupus. Will my symptoms get worse? Will I be able to have a healthy pregnancy? Will I have the energy for a full time job? Will I have the energy to raise children? Will the men I date be able to handle the fact that I have Lupus or will it make them want to head for the hills? The real question becomes, what do I do with all of these fears and anxieties?

When any sort of fear comes into our lives, no matter what it is, we must remember the power of God. God is bigger and stronger than any scary thing that looms in our path. Just imagine the universe in its incredible vastness and remember that God created it! That is power. Then remember that he loves you. When something bad happens in life, we might be tempted to ask if God loves us. If God loves me, why did he allow me to get a disease? But that question is focused on the physical, and God focuses on the spiritual. Yes, bad things happen on this earth. But God allowed his son to die for us in order that we might have a new life. That is love. This world is temporary, and we must use the struggles that come with it to strengthen our relationship with God.

The following post features my amazing sister-in-law Alyssa and her journey through Lyme Disease. Lupus and Lyme can often be mistaken for one another. Although very different diseases, they can have some similar symptoms. We can understand each other in a way that no one else does. She is new to the blogging world and I know that you will truly enjoy her writing and feel inspired just as I do. Show some love! 

For me, the most shocking part of living with Lyme disease stems from how slowly and yet how quickly the disease progressed. My immune system was never the strongest growing lyme-lightup, and I began having some persistent gastrointestinal digestive issues in 2009.  I also recall some weird times when I had lower abdominal or back pain and had to have my ovaries, bladder and kidneys tested, but results never revealed a cause.  The strange symptoms would resurface and then disappear again.  The most frustrating thing was never finding any answers.  I had my gall bladder removed in 2010, which provided no relief.  I struggled with periods of remission and illness for about four years.  I grew accustomed to the symptoms and just assumed that everyone experienced the weird things that popped up every now and then, and the rest of the persistent digestive issues were simply normal for me.  At times, the illness interfered with my classes or my plans, but I was able to push through.

 

I had become accustomed to my illness, but on the other hand, when the Lyme really progressed it was like a whirlwind.  This past summer I began a quick downhill tumble, picking up more and more unexplainable symptoms and growing weaker and weaker as the months flew by.  It started with fatigue and an intense pain near my left rib cage.  Then I couldn’t stand for more than a few minutes without my legs turning purple with bright red splotches and an itching sensation so strong that I have to sit down and elevate them.  I started wearing sunglasses indoors because the light shining through windows causes a severe headache behind my eyes.  Sometimes I even have to wear them at night when I’m in the car because the headlights of oncoming traffic have the same effect.  My hands and feet randomly go numb, tingle or burn.  I have chronic sore throat and swollen glands, discolored fingers and brain fog.  Some days I have a hard time remembering anything.  I run a constant low-grade fever and experience hot and cold flashes and night sweats.  All the weird symptoms piled up, but the fatigue, joint and muscle pain are worst of all.  My health was spiraling out of control, and I still wasn’t finding any answers.  By the age of 22, I had seen 10 doctors, several unconventional health consultants, had two colonoscopies, two endoscopies, a cystoscopy, a surgery, multiple hospitalizations and countless ultrasounds, CT scans and blood tests.  I tried changing my diet, eliminating stress, taking health supplements and medications to no avail.

 

My mom’s cousin who has Lyme heard about my health from my grandparents and warned them that it sounded like the disease that had torn apart his own life.  I remembered two tiny itchy bug bites with black centers from a fishing trip in June, and that realization pointed us in the right direction.  Lyme disease comes from contact with an infected tick, and it’s likely those bites I remembered could have been from ticks.  I’ve also been bitten by ticks numerous times growing up.  There is no way of knowing exactly when I contracted the disease as it can lay dormant for years until a trigger causes it to suddenly progress.  I began seeing a nurse practitioner in Edmond because there are NO Lyme doctors in the entire state of Oklahoma.  Skeptics in the medical world refuse to acknowledge the existence of chronic Lyme disease because the blood tests for the disease can show false negatives and aren’t the most reliable.  Therefore, the disease is often diagnosed clinically based only on symptoms.  Lyme, like several other autoimmune diseases such as Lupus and Fibromyalgia, disguises itself in a myriad of symptoms that often reflect other illnesses.  It’s easy to misdiagnose invisible illnesses that cannot be confirmed on paper.  Therefore, many traditional physicians say that chronic Lyme disease does not exist.  They claim that Lyme disease is treated with 10 days of antibiotics.  Yet, so many patients deal with two to three years of severe illness and treatment, and then experience relapse years later and have to begin treatment all over again.  Not only do patients fight the disease, they also fight the belligerent medical community that refuses to acknowledge our suffering.  The longer a person with Lyme disease goes untreated, the more severe the disease becomes affecting the brain, heart and other crucial organs.

 

More doctors in northeastern states recognize and treat Lyme, as the disease originated in Lyme, Connecticut.  Here in the central U.S., it’s a different story.  I happened to get online one day and look up “Lyme walk” or “walk for Lyme” because I was inspired by my sister-in-law’s involvement in the local walk for Lupus.  I found one hit for a Lyme walk, and it was held years ago in the northeast.  The awareness in our area barely exists.  I drive six hours every four months to see a specialist in Columbia, MO.  A few friends of mine see specialists in Nevada or Texas because the number of cooperative physicians in this part of the country is limited.  Thousands of people suffer from chronic Lyme disease as I am.  I can’t speak for them, but I can certainly speak for myself and say that this disease is real and must be acknowledged.

 

After two extremely high-dollar Lyme blood tests, and visits to Linda Lea the nurse practitioner in Oklahoma (who paid out of pocket to travel, train under other Lyme physicians and learn more about the disease) and my specialist Dr. Crist in Missouri, I got my positive diagnosis in December.  Now my disease has progressed so that I have been forced to drop out of school, one semester away from graduating, quit my job and most social activities.  I’ve been on a regimen of rotating strong antibiotics since November.  I also follow a gluten-free, sugar-free diet and take a lot of natural supplements to help my body fight.  No treatment works the same for every patient, and therefore I’m trying anything and everything to get over this illness.  My sweet husband and I got married in May, and wow, this is not what I expected for my first year of marriage.  Everyday is a struggle, but I have certainly gained new perspective from my illness and learned that though I have no choice in the matter, right now I am going to live a purposeful life at a snail’s pace.  I have the option to use this time to smell the roses and the blessings God has given me and to realize the beauty in every accomplishment I make – even if my day’s sole accomplishment was getting out of bed, taking a shower, talking to a friend or being pushed through the park in a wheelchair.