selena gomez

Selena Gomez Starts the Selena Gomez Fund for Lupus Research

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Selena Gomez is supporting her fellow lupus fighters in a big way.

The singer, 24, recently donated to the University of Southern California’s Keck School of Medicine. The money will go towards the Selena Gomez Fund for Lupus Research, which will support a pilot research program focused on treating complications of lupus.

“I continue to be optimistic about the progress being made in lupus research and am proud to support the promising work at Keck School of Medicine,” Gomez said in a statement, according to People. “I am hopeful for the millions of us around the world that may benefit from this.”

The Lupus Foundation of America estimates that at least 1.5 million Americans and 5 million people around the world have lupus.

Gomez first revealed she had been diagnosed with lupus after she took a break from touring while undergoing chemotherapy to treat the condition. “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke,” Gomez told Billboard in 2015. “I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy. You’re a**holes.’ I locked myself away until I was confident and comfortable again.”

Since then, Gomez has spoken out about how the autoimmune condition has led to anxiety and depression. In October, she temporarily checked in to a rehab facility to help manage her health.

Photo courtesy of Joella Marana via Flickr

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Why Living With Lupus Feels Like Navigating a Field of Boulders

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As a young girl I spent some time participating in the Girl Scouts of America program in a small town outside of Philadelphia. We traveled to various parks to camp and learn about historical figures. Being right near Philadelphia, I was able to really engross myself in the history and spirit of the United States. I went on field trips to downtown Philly to see the “Liberty Bell” (they told us the real one isn’t displayed in order to preserve it), Native American artifacts and Quaker religious grounds at the White Clay Creek Preserve and the Gettysburg battlefields, to name a few.

One trip we took brought us to the Hickory Run State Park – close to the Poconos in Pennsylvania. We arrived and all you could see were boulders as far as the eye could see, some five times as big as my fifth-grade self.

We were allowed to climb across the field for hours. My friends at the time took off and were able to leap from one boulder to the other, never tripping or fearing the large gaps that existed. I remember I took my time, I slowly hopped from rock to boulder, trying to avoid the gaps and not wipe out. That field trip really stuck with me over the years – who knew it would predict my future roadmap with lupus.

From the beginning of my journey in high school, when I began to develop Raynaud’s Phenomenon, the disease took almost four years to fully unveil itself. Just like that boulder field I carefully crawled over, the scary doctor appointments, blood tests and medical students poking at my hands and feet like a lab rat were the smaller obstacles that weren’t very intimidating. I would go home and to school, wearing gloves and extra clothing in order to overcome the temporary battle against the cold. Just as others were able to move much more quickly over the rocks, other kids were able to run outside in the snow, or wear t-shirts when it was 70 degrees outside; however, I could not.

As I went further down my path, those rocks became larger and further apart. I feared that snakes and bees’ nests would pop out at me while I tried hopping to the other side. Along the way, I did encounter humans who sneered and smirked at my struggles that they did not want to understand. I had to keep reminding myself that I was faster, stronger and had more willpower to overcome the negativity and insecurities that fueled that behavior.

I did notice that with every large boulder, there was a much smaller and easier rock I knew I could step on without any worry. I was able to gain mental strength and confidence from being forced to face my fears.

Eventually, getting blood drawn became a part of normal doctor visits. I knew they helped me check my body for disease activity and helped to keep me healthy.

As one would expect, I eventually came to the biggest gap between two boulders I had ever seen and I was exhausted. How would I keep up with the others? My heart was now giving me problems, my legs looked like tree trunks from all the steroids I was on, my face was the shape of a round wheel of provolone cheese. I eventually found my jar of bravery, opened it up and problem-solved my way to the other side. I did take longer than the others, but I used my past experiences to help me walk my way around the dangerous gap and onto the other side, ready to continue down my path.

Eventually we all were called back as a troop to climb back to the parking lot. The field was much less intimidating and I found myself almost sad that the challenges were over. Now that my condition is much more controlled, I sometimes find myself wondering if I received the right diagnosis or have made up all of that pain and struggling I endured a few years ago. It can seem like you have lived more than one life as you move from chapter to chapter in the struggle against lupus. But then a new symptom rears its ugly head or I am melted into my bed for two days until my steroids kick in, which brings me back to reality.

Unfortunately, I will never be able to go back to the start from where I came like I did on that Girl Scout trip. My lupus journey will continue to sometimes be easy and sometimes make me feel like there is no way I can survive the systemic pain. But I do. I survive and I keep going. I grow from each day’s events and know I am always headed in a better direction than I was the day before. If life were like that boulder field, there would be no true journey or personal growth. To me, that seems pretty boring.

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Thinkstock photo via aoldman.

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Why I Became an Ambassador for the Lupus Foundation of America

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Some people ask me how. How could you be so passionate about something that has altered your life and causes you to struggle? How do you have this strength to keep pushing? That’s always an easy one. I try to fight back harder than how hard lupus attacks me.

Lupus has changed the way I think and feel, how I approach different people and situations, how I plan my future… I could go on. What is my forceful method in fighting back? Becoming part of that force dedicated to finding a cure.

I started out volunteering for the Walk to End Lupus Now NYC right after I was diagnosed last year. I had great success fundraising, an enjoyable time with my family and boyfriend and had an emotional first walk inside. It was truly an incredible and inspiring experience. I fundraised to attend the Evening of Hope Gala, where the speakers tugged on my heartstrings and almost drove me to tears and spoke of inspiring projects that could finally lead to a cure. I became part of the Young Leadership Committee in NYC to bring young minds together to unite the entire metropolitan area in raising funds for lupus research. I became hooked. I knew I was making a difference. Then, I was invited by the foundation to become an official Lupus Foundation of America Ambassador and participated in formal training just last weekend. This is such a proud time in my life. This is how I’ve found the strength to become an ambassador.

girl holding purple lupus pamphlet

I can control the uncontrollable.

I believe only God knows what my situation with lupus is going to end up like. In the meantime, I can take steps to ensure I live the most fulfilling life possible despite lupus. They call this autoimmune disease “the cruel mystery” because nobody can predict what it will affect day to day. By becoming an ambassador, I can create a force in society that will encourage education about this illness, bring about constructive conversation, increase awareness and funding and increase our chances of finding a cure. This is what I can have control over. I can’t predict what tomorrow will bring, but I do know that my efforts will directly correlate with the expansion of vital research. Subconsciously, this is how I cope. Every time I speak or attend an event, I feel this new glimmer of hope. I’m confident that through these efforts, we will find the sought after cure for lupus in our lifetime.

There’s a force I can always turn to.

I’ve gained a new family. Being from the NYC area, I’ve met people at these events from all walks of life and all backgrounds. We all have one common goal that brings us together. This unity is truly remarkable. We are not only advocates for ourselves, but advocates for each other, and we constantly celebrate each other’s successes. Whether that’s on social media or in a private conversation, we all know we have someone out there who knows what having lupus is like and who is advocating just as hard as we are. I met with some amazing people at our ambassador training last weekend. Re-acquainting with some old faces and encountering some new ones, we were able to open up and share the dark times of our stories but at the same time celebrate what we were trying to accomplish together. Each one of these beautiful people are taking this disease in their hands and choose not to be negative about the outcomes of their lives; instead they are strong and make the world a better place. Being surrounded by this is surreal, and I finally feel like I am not the only one battling this. I feel like although I lost some quality of life, I gained a second family – which is truly priceless.

Empathy.

This is huge, and it’s one of the reasons why I wish to pursue the career path in health care I’m embarking on. I know the daily struggle of lupus, but I’m blessed that I am able to still do so much in my life. When I’m uncertain where my path is taking me, I take time and pray that God will carry out his purpose for me. Through my journey I believe that God is using this illness for good, and not to give me hardship. One Bible verse nails it perfectly. It was sent to me right after my diagnosis, and boy, was it right.

Jeremiah 29:11 says:

“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.”

My purpose in life is to help those who are struggling and unable to help themselves. These people, like myself, need hope in their lives; however, some are unable to have a hands-on approach. They rely on people like us, who understand how cruel lupus is and therefore are motivated to make a difference. We are their hope. This is what becoming a Lupus Foundation of America Ambassador means to me.

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Why I Still Struggle to Talk About My Lupus After 7 Years

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Seven years ago I started down this journey, this thing… lupus. When I was diagnosed even the doctor didn’t really sit there and explain much to me. Most of the knowledge that I have about this disease has been acquired through relentless reading, seeking and searching for answers. I acquired my love of reading from my mother at a very young age and I am blessed to say that insatiable thirst has never left. My one bedroom apartment looks like a small library as I continue to collect a vast array of literature several of which are dedicated to the seeking of answers to this incredibly frustrating journey, this thing… lupus.

Even after seven years, I still struggle to speak about lupus and how it affects me specifically. There is a thick guilt that comes with the association of each explanation. It is as if I am making some sort of excuse instead of just trying to explain the situation. Even speaking about it with certain family members is a no-go. I feel as though I should just “do better” or “try harder.” I get side comments or off-handed suggestions that maybe, just maybe, I might be blowing things out of proportion. After all, I don’t look sick.

Most people see the “strong” side of me. The side that musters up everything I can to hide the pain, the fatigue because that is what most people want to see, whether they admit it or not. I think that is what stays within the confines of their own comfort zone. The two or more days after, that it takes to recover… those I keep to myself. That way, everyone can stay in their lane of familiarity.

But lately….oh lately, it has been nearly impossible to do what I normally do because for the first time since 2010, I have had to go through chemo again. F*cking chemo.

When I went through my first round in December 2016 I didn’t tell anyone. I had just walked away from a job where I was miserable, so my stress levels were high to say the least. And as I sat in the hospital chair being pumped full of poison, I cried.

What people don’t realize is that all the masks people with invisible illness choose to wear for the comfort of others can take a toll on their own well-being. The stigma attached to being “the sick person” in the room is real whether people will admit it or not. Not everyone is designed to deal with long nights in the ER, restless bodies in pain next to them in bed all night, strict and often frustrating diets, canceled plans, etc. Most people think they are, but when the shit hits the fan, very few people are left waiting in the wing. It is disheartening and outright heartbreaking.

When I had my second round in January I at least got to do it from home and stepped out on a very narrow and scary ledge… I actually told a few friends. Telling people was almost as scary as going through the procedure itself. Would it matter? Who would show up? Who wouldn’t? It didn’t go 100 percent according to plan, but in the long run it was worth it. The friendships forged through the experience have been invaluable. I now have two months reprieve before my third and final round. Hopefully, it will squash this wicked flare I have been sludging through.

My pride has been also put into check more than I will ever comfortable with. I am currently single and in my 30s and with that comes a high level of independence. Having someone help with the laundry because I have thrown up all day, or bring me food because just the thought of traversing the grocery store wears me out are all things 1. I have never done before 2. I am still struggling with because of pride.

That familiar guilt creeps in and I have not yet figured out how to just accept the help without it. Until then, I will cherish the friendships, the ones that really matter. The ones that don’t judge the uncontrollable situations and still choose to love me because lupus does not define me, or my purpose in this life, but it does affect it. It is a messy and complicated journey.

This thing…lupus.

This blog was originally published on The Better Half of Me.

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Thinkstock photo by kotoffei

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When People Assume 'Diagnosis' Means 'Cure'

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So you feel unwell, you visit your GP who decides to refer you to specialists to help turn your symptoms into a diagnosis. However, like myself, those with chronic or rare diseases will be made aware – this may not mean a cure. Before being diagnosed with such conditions I like most people would have assumed that medicine could heal and ultimately cure me. Unfortunately in my circumstances management is “what we are striving for.”

For instance, my hereditary bleeding disorders, one being Von Willebrand disease means my blood fails to clot at a normal rate resulting in excessive and prolonged bleeding, and my connective tissue disease, or SLE/lupus to the majority, are both not only notoriously hard to diagnose but even harder to manage.

My journey to diagnosis has taken many years, and many tests, investigations, discussions, departments, and differential diagnoses before reaching the current labeled stage.

Through my journey to finally receiving a label to encompass my life-altering symptoms, I had assumed once I was correctly categorized I would be offered a cure.

Even with the knowledge that these conditions were lifelong, I never assumed that my main treatment plan would be management of symptoms as opposed to fixing my failing body. That is not to say the symptoms are not the most bothersome aspect to deal with but being told that the best I could hope for was extended gaps between “flares” or lessening the impact of conditions on my day to day would be the only goal.

Through visiting blogs and forums I have discovered so many people living with chronic illnesses also spend months or like me years waiting for diagnosis and even more time trialling treatments to bring respite.

The toll physically and emotionally is huge.

My ailments have taken control of nearly every aspect of my life, from relationships, to working (I had to leave my career due to ill health), socializing, and even down to what I wear. The thought that there is no cure for my conditions is one of the hardest parts to digest.

My diagnosed bleeding disorder and gynecological issues means to date over a four year heavy and disabling “period,” resulting in severe anaemia, pain, nausea, vomiting, and a very unhealthy consumption of sanitary pads. My connective tissue disease means daily aches, pain, fatigue, depression, anxiety and rashes.
My medication means constant new side effects, daily planning and constantly checking that I do not rattle when I walk — I’m fairly certain I do.

Those close to me are on the whole supportive, but some have gotten bored and resentful of the fact I’m “not better yet.” Surely now I have been labeled I can be fixed and “normal” again. (I personally do not feel I’m abnormal, but this phrase has been said to me roughly 10,474,629,273 times in the past few years). My life has become unrecognizable from the one I had established before my problems become something unable to be ignored or played down.

Unlike when you have the flu or a stomach bug which in time or with medication is cured, people find it very hard to digest the fact that chronic conditions are often just masked, and therefore despite improvement or good periods are still just lurking just below the surface.

I recently tried to explain this distinction to a friend who unfortunately failed to grasp the concept, and rather unhelpfully accused me of making excuses. This hurt a great deal as when even people that are supposed to love you can not accept the fact a cure isn’t available – how can we expect to ourselves while living it, daily, hourly and by the second.

Unfortunately the reaction is a common one, I’ve seen and heard and lived through so many similar exchanges throughout my journey. Through communities such as “The Mighty” and other social media all telling the stories of those with chronic health issues and highlighting the daily impact thereof – I hope one day greater awareness and compassion will be extended to all like myself.

Until then please remember:

You are truly doing the best you can.

Don’t feel ashamed if others cannot understand your journey, or choose to exit your life because they cannot deal with it. This is not a failing on your part, it says more about them than you.

Your conditions are not who you are, they deserve and demand respect but you are so much more than your diagnosis.

I wish that your management helps you find respite.

I hope that continued awareness will mean those who cannot be cured in the conventional sense will receive greater support in maintaining a functional life.

I hope that each of our journeys can be one that may offer support to another.

Finally, please know that we are all unique and rare and should in some way find a way to make peace with our diagnoses and not feel guilt or despair at the lack of a cure. Whether I will ever get there – who knows, but I’m going to give it my best shot.

If you want to know more about the conditions mentioned above please visit these websites: Molly’s Fund and National Hemophilia Foundation.

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Thinkstock photo by Everste

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Lab Results Should Not Be the Only Indicator of Illness

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One of the worst things I can do for myself right now is obsess over lab results. I am sick with a cold on top of experiencing a psoriatic disease flare and, possibly, the beginnings of a new lupus flare. I don’t even know which disease to blame for which symptom anymore – I just know I feel crappy. And I absolutely should not be worried about test results, because stress makes nothing better and everything worse.

Yet here I am, propped up at my desk, refreshing my email every so often to see if my results are ready. I’m not sure what to expect. I feel like homemade hell and that tells me my sed rate and c-reactive protein could be up, but I’m also on two new meds, which might be keeping those inflammation markers in check. No one has ever done a complete and total work-up for all of these things until after I started taking medication, so there is no baseline. I have the basic CMP and CBC results from a routine physical in 2013 for comparison, but no sed rate, c-reactive protein, dsDNA, etc. from the time before diagnosis with which to compare my current state.

With no prior healthy values to compare to my current sick values and with no pre-medication values to check against my current medicated values, how does any doctor anywhere know anything about what is really happening with me? If certain results come back “within normal limits,” is it because I’m healthy or because the drugs are helping? The goal is not necessarily to get back a perfectly normal lab report. The goal is to get back a perfectly normal lab report and feel perfectly normal.

How do we get a doctor to see beyond the numbers into the actual life of a patient? If the normal range for a sed rate is zero to 20, is 14 really normal if your five previous sed rates were one to two and you are experiencing increased pain and joint stiffness? If your sed rate was 25, but drops down to 18 after starting meds, then is it really normal? Is there a difference between “normal normal” and “medicated normal?”

Perhaps your dsDNA is positive and your rheumatologist diagnoses lupus, starts lupus meds, then schedules you for a retest in several weeks. Your dsDNA may be lower. It may even fall within normal limits. There may even be zero antibodies to your double-stranded DNA seen. Does that mean you no longer have lupus? Are you in remission? Are you suddenly well? Did the flare end on its own or did the medication stop the attack on your dsDNA? At my last check-up, my dsDNA was still positive, but the number was lower. I didn’t feel any different. Was the flare ending? Was the medicine helping? Would it be higher if the test was done when I felt my worst? Better if tested when I’m feeling relatively good? Who knows?!

I want to be healthy. I want to be 100 percent. But if I’m not, then I want my test results to show accurately what I am experiencing so that my doctor can help me get closer to 100 percent. Unfortunately, the numbers on those lab reports do not always reflect reality. One of the most frustrating things for those of us with chronic illnesses is that our routine labs are a look from the outside at a house through the window… they show what is going on in one room, but they cannot see what is happening inside the rest of the house.

The worst part of being sick with this kind of illness is feeling like you have to prove you are sick. A doctor looks at normal results and says, “Well, this is great news! The meds must be working!” But the patient? The patient is exhausted, losing her hair, experiencing increased joint pain and stiffness, hoarse, freezing one minute and burning up the next, unable to remember how to spell her own name, and beginning to question her mental state. This is not normal. This is life with a chronic illness.

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Thinkstock photo via Jovanmandic.

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