Archives For lupus foundation of america

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. 

 

Have you ever been at the Zoo where they evacuate due to a loose animal? I have!  A couple of weeks ago was the annual Lupus Walk held at our local Zoo. The day started out like any other. I woke up late, frantically tried to get my family and myself out the door in time for registration by 7:45. When we arrived there was about half our team already there waiting for us. After checking-in and the rest of the team arrived we went inside the Zoo for the opening ceremonies. Everyone huddled in their own groups talking and waiting for the festivities to begin. I was snapping pictures of our team. Then we hear a voice on a megaphone “please move to the right of the Zoo, there is any animal loose.”

My family and friends that joined me, so thankful for them!

My family and friends that joined me, so thankful for them!

No one moved. Honestly, this had to be a joke. There was no way that an animal could be out, roaming around!

“I am not kidding, there is seriously an animal loose in the Zoo! Please exit to your right.” Now are we talking a flamingo or a lion? I mean there is seriously a difference! 

At that we all took what he was saying as fact and there was a sea of people making their way to the nearest exist. Once everyone was out the doors closed and there we were, a large group of Lupus Walkers with no walk to be had. Everyone found their area in front of the Zoo to wait it out. We were told that it wouldn’t be long before everything would be secure and we could enter again.

I guess it's fitting that my dog is a Canis lupus familiaris, aka Siberian Husky!

I guess it’s fitting that my dog is a Canis lupus familiaris, aka Siberian Husky!

During the waiting period we slowly gathered more information. There was not only an animal loose, there were three wolves.

Do you know what the scientific name for a wolf is? Canis Lupus.

Now that is priceless! They just wanted to take part in the walk just like everyone else, I mean it’s practically like they are the Lupus mascot.

Daniel Orton from the OKC Thunder

Daniel Orton from the OKC Thunder

As we continued to hang around I was able to meet an OKC Thunder player, Daniel Orton. He was joining the walk in honor of his mom who lost the battle to Lupus in her early fifties. He shared his story on the website and it was so neat seeing him and his family there joining us as we all fight the illness. That is one of the amazing things about these events, we may not know each other, but we have a connection. As we walked I was able to talk to other people with Lupus and hear their story, share mine. We all have a different battle to face, yet we understand what the other is facing at the same time, we support one another!

So back to our mascots roaming the Zoo- apparently there was flooding from the storm the night before which caused them to be able to get out of their habitat. About two hours went by before all three were caught and the Zoo was secure. By this point everyone was ready to get the walk started. They opened the gates and we moved in. There was some confusion because we were not sure if there was going to be the opening ceremonies or not, they never actually had them. I’m not sure if there was any set plan but everyone headed for the course and the walk had begun.

I feel pretty confident to say that there has probably never been a walk quite like this before, and probably never will!

 

Lupus. It’s a word we all know but a disease most know so little about. I was once a part of the crowd that knew nothing about this invisible illness, and then I found  out I had it! There is no simple way of getting diagnosed. In fact this was a four-year process and I didn’t even realize it! When you keep getting misdiagnosed but have faith that the doctors treating you are accurate then it doesn’t really cross your mind that something much more could be going on. It all started one night, four years ago when I awoke in a panic. My heart was racing, my chest felt so tight and painful that I could hardly breath. I could have sworn I was having a heart attack! I can still remember how scared I was, I’ve never felt that kind of fear before. We went to the ER only to be told that my cartilage in my chest was inflamed. They chalked it up to exercising. I was told to simply take some ibuprofen and I would get along just fine.

feetAround this same time I also had a rash on my torso. I went to several different doctors, all of which gave me a different answer, different medicine and nothing proved to work. I was beginning to feel like I was just imagining things. But, I didn’t really know what else to do other than maybe find a doctor that could not only give me answers, but that I could trust.

During all this time my chest pain would return for days or weeks at a time. Eventually I got to the point where I felt like I couldn’t breath so I went to our new family doctor and he started me out on an inhaler to see how it worked and brought me in for follow-up appointments. I was so appreciative of a doctor that cared for his patients and followed up with them. I wasn’t on the inhaler very long and wasn’t fully convinced that it worked. Then I got pregnant and my symptoms improved, which can happen with Lupus patience.

A few months after having my son my symptoms began to come back along with a new one that I had never seen before. Every time I got cold my fingers would turn stark white and stay that way for a very long time. They would then go painfully numb as the blood worked its way back in. This was a pretty scary thing to see. At first I thought it was just poor circulation but I really felt like something wasn’t exactly right. So, I went in to see my family doctor and showed him a picture on my phone of what my fingers were doing. He immediately called for blood work.

Within a week I had my results back where I was told that they were referring me to a rheumatologist. Everything finally came together at that first appointment. The past four years of chest pains was Lupus, the rash was Lupus, the painful shortness of breath was Lupus, my fingers turning white was Lupus. I didn’t even realize during all this time that I was being misdiagnosed, thankfully I found a doctor that called for the blood work.

This is a problem for so many with Lupus because it’s symptoms mimic that of so many other diseases. No one blood test can diagnose it either. It takes blood work, examining your symptoms and your history. Because of these reasons it can take years before a person is diagnosed, for me it took four years and I didn’t even know it!

So much changed after I received my diagnosis. I am learning my illness and hoping to not only spread awareness so others will not go misdiagnosed, but to spread a little hope and inspiration to others in similar circumstance, because Lupus does not define me!

If you would like to join my team and walk a mile in the annual Lupus Walk or donate to the cause, you can do so by following this link.

Thank you for helping me in my fight with Lupus!

hands

“You are my strength, I watch for you; you, God, are my fortress,” Psalm 59:9 (NIV) 

This week I have been exhausted. No amount of going to bed early will help and coffee won’t do the trick. Sometimes this is just life with lupus. I have only known about my having this disease since May but the process of finding out what was going on with me began back in January. I started to notice that my fingers would turn bright white and go numb when I was cold. When I am saying white I mean stark white and it would take a solid 10 to 15 minutes before my fingers would turn back to normal. It was really alarming and I wasn’t sure what was wrong so I took a picture of them and posted it to Instagram and then I took that picture and showed it to my family doctor. At that point we began the process that lead me to my diagnosis. So many things that I have struggled with began to make sense as they were signs of my lupus yet I was unaware and by themselves they seemed harmless enough to not got to the doctor. But even then there were things that I had gone to the doctor for and it was missed, like several years back I went to the ER for chest pain and it was said that I had inflamed cartilage causing the pain but in fact it was my lupus. My symptoms were wide-spread at first so they were not being noticed and lupus is a disease that has times where it is active, flare ups, and times of remission so it wasn’t until this May that I learned what was truly going on with me.

No one wants to hear that they have a disease that they will have to deal with for the rest of their life. It stinks! But at the same time I can’t focus on that! I may not know the reason behind all this, but it is the road that has been set before me. During the long months of waiting I had no idea what was going to be determined and I had my moments of worry, but I truly believe that God gave me the strength to not focus on all the “what ifs” that were so easily there. I felt his presence during this entire process. He has a plan for us all, we may not understand that plan and guess what… that’s okay because it’s in His hands.

Every day looks different. There are good days and bad. And sometimes I have to remind myself that it’s okay to have a bad day.

Every flare up looks different.

Today, and this week I have struggled with fatigue, but tomorrow is a new day.