2014 Cleveland Walkers of the Week
For the weeks leading up to the walk, we like to shine the spotlight on special walkers and share their stories. The men and women we spotlight are particularly dedicated to our mission, and we hope that their stories inspire you as much as they inspire us.
My name is Chrystle Jones and I am a LUPUS SAVIOR. My first encounter with lupus was when my Mother was diagnosed in 2005. I was a part of her support system, and during that time, I saw her and her body go through so many changes and it was a learning experience. She lost her fight to lupus on June 15, 2008. Two years later I diagnosed with lupus. My loved ones and I have witnessed the changes that my body and life, as a whole, change and not at all for the good. Some days are better than others, but my faith in God and my great support system gives me the strength to keep on moving forward. I have found comfort in knowing that there are people in my life that are in my corner including, but not limited, to my family, friends, support groups, a great team of Doctors, and even strangers that I have met who have a word of encouragement for me, along with the positive actions to show genuine care.
I want to do whatever I can in my power to help fellow lupus saviors’ walk with lupus a little easier while educating everyone on the different aspects. I am currently in the EMBODY study to help find a cure for this horrible life changing disease. I figure ‘why talk about wanting a cure and not do my part in the process of finding the cure?’ My work to help the cause does not stop there. I promise to keep making positive moves to change the impact that lupus has.
Until then, I pray that everyone’s life that lupus has touched, that God gives you the strength to keep on living, working harder to do your part, be encouraged and know that you are never alone in the journey of life with lupus. I always say that this is not my walk; this is so I can help someone else with their walk. LUPUS will not beat me.
I am a perfect picture of what lupus looks like.
I was diagnosed in May of 2007, the end of my senior year of high school. I had an easy diagnosis as compared with others who have lupus but it was only because my symptoms became so pronounced so rapidly. I missed much of the latter half of my senior year because of symptoms that we didn't know were from lupus at the time. There were many days when my dad had to carry me to and from the bathroom because I was so weak and I was in such horrible pain. I was put in contact with a wonderful doctor at the Cleveland clinic, Dr. Rochelle Rosian. She is still my doctor to this day but when we first met, she told me and my family that she was doubtful that I would make it to my freshman year of college. Fortunately, I have a wonderful family and friends who were my unwavering support and still continue to be to this day. I have had many complications throughout my journey; being diagnosed with stage 3 lupus nephritis, finding a pituitary tumor, losing much of the hearing in my right ear, losing my hair multiple times, and much more. I finished college on time in May of 2011 and even though I was in pain, I still walked across the stage to receive my diploma for middle childhood education in math and language arts!
I am now in my fourth year teaching at Girard Junior High School teaching 8th grade language arts and I absolutely love it! I make it a point to educate my students about lupus and use my story as a tool to encourage them that they can achieve anything they put their minds to! The awesome students and staff that I work with also wear purple for me and the cause every year for POP and this year they instated a lupus walk in my honor that all of the 7th and 8th grade students and staff participate in.
I have accomplished so much in this crazy journey that has been the last seven years and may be the rest of my life, but I like to use my story to give hope to others who are also lupus patients or family members of patients. I am now in the best cardiovascular shape I have ever been in my life (I run 5ks and 10ks now, the most recent 10k being in Cleveland as part of the marathon in May). I am getting married in October to the love of my life, and I am spreading the word about lupus to help increase awareness as much as possible!
By Jeanette Vega
Don was diagnosed back in Oct. 2006 at the age of 7. We took him to the Doctor due to the butterfly rash across his nose, him being tired a lot and complaining of joint pains. Once diagnosed, his life and living changed. He couldn't do all the things a healthy kid could do without precautions or special instructions. A few years after he was diagnosed we learned that an aunt of my dad’s had passed away from Lupus and that's where it came from. I always knew it made him sad and upset but he never complained or showed any weakness to Lupus.
He took up boxing but had to quit per Doctors orders. He loves football but can't do that either. He's dealt with kids laughing at him because of his patches in his hair. But he still doesn't allow ANYONE OR ANYTHING bring him down. I am so very blessed and lucky to have him as my son, my hero. I can honestly say he's stronger than I am and I wouldn't want it any other way. Through the hospital stays and flare ups and 4 different specialists that he has to see, you would never know he had Lupus. And it's just that, HE HAS LUPUS, IT DOESNT HAVE HIM.
Don will be 16 in January and is a sophomore in High School. We take it one day at a time and pray that we can find a cure. If you’re not aware what Lupus is, as was I, please educate yourself and help fight against it. I asked my son," What is the worst part about having Lupus"? He responded, "Not being able to do anything".
A Guy with Lupus
By Leslie Russell Yager
For 15 years I lived with Discoid Lupus. When this diagnosis came, I really did not think too much of it. I had some irritation to the top of my head, a little flaking, some hair loss, even had some of the scar excised but generally it did not bother me. I seldom thought about it. After all, less than 20% of people with Discoid Lupus ever go to Systemic Lupus, and only about 10% of men ever get lupus.
This all changed in January 2014. During a routine dermatology visit, the doctor mentioned that the discoid lupus, which had been stable for many years, had a few new outbreaks. I casually mentioned that maybe it was why my joints seemed to be hurting. With further questioning and examination, it was discovered that most of my joints were inflamed and swollen. She immediately referred me to a rheumatologist.
After the consultation and associated blood work, I received the news, Systemic Lupus. It was welcome news, as I had a diagnosis but it still left me with questions. Why was I so tired, how can I accomplish the things I need to around the house while dealing with the pain, how to tell my 9 year old that I can’t have her hanging on my arms and climbing on my lap all the time, due to the pain. The last one was the hardest, as she has a very tender heart, and she started crying. She asked if I was going to die because of it.
With this question, as well as my own questions, I needed answers. My first search for information was the Lupus Foundation of America. This was a treasure trove of information and help, not just for me, but also for my family. It provided down to earth, factual information that could help those who suffer with Lupus, family members and also caregivers. The most important answer I found was to the question that my daughter asked: No I will probably not die of Lupus, but will die with it. Another important thing that I found was that there is no cure for Lupus, and without research a cure can’t be found. Research takes money and I decided right there that I was going to do my part to help. Even though I had never participated or completed a 5K to date, I decided to sign up to walk for a cure and to encourage others from Grace Church of Mentor to join me in this.
Dealing with Lupus is a daily struggle for me and others. Only through the strength that Jesus Christ gives me daily and the support of my family will I persevere. He has allowed this in my life to draw me closer to Him and to be a witness to others about His love for us and his care.