Joseph

Name: Joseph
Location: New York, NY/Mumbai, India by way of San Diego, CA and Dallas, TX
Age: 25
Diagnosed with Juvenile Rheumatoid Arthritis at age 8

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How has your condition impacted you?  RA and Heart Disease have impacted my life tremendously. At a very young age, I had to learn to deal and live with my conditions. This made my childhood very difficult. I was unable to grow up the normal way healthy kids do. I would dream of being as strong as my athletic twin brother and living a disease-free life. I found yoga and decided to follow my dreams of a disease free lifestyle. Since then, my life has changed and any pain I feel in my body only fuels my desire to transcend the limitations within myself - mentally, physically, and emotionally.

What would you like for other people to know about your condition?  I was diagnosed with JRA when I was 8. I had many complications from the physical stress and from taking all the medications. Between the age of 11 and 13, I had major knee surgery, suffered from migraine headaches and had stomach ulcers. At the age of 13, I had a heart attack. I found yoga when I was 19 and have been been in remission for the past 6 years of my life.

What would you like to tell someone who was recently diagnosed with your condition?  Not to settle for the cards you have been dealt.  If you do not learn to have joy in life and accept your condition(s), then you might as well live in a box. We are given our condition to learn from it and to become stronger and wiser about the way we live our lives. All conditions can be controlled, if not reversed, through our own minds. It's our willingness to change and not live under the shadow of our disease that gives us joy in life.

Here is the first quote that popped into my head after I wrote this. It's from my teacher, Bikram Choudhury - "Having doesn't mean anything if you don't know how to use it."
I like this quote because it reminds that my conditions were a gift. A gift which taught me that anything in great life is worth suffering for. :)


Thank you so much Joseph!  Your smile and positive attitude are contagious!!
Be sure to check out more of Joseph's amazing success with Bikram Yoga here.

Jennifer

Name: Jennifer
Location: New York
Age: 38
Diagnosed with Hashimoto's Thyroiditis at age 33, Sjogren's Syndrome with a small fiber peripheral neuropathy at 35, Systemic Lupus Erythematosus at 38

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How have your conditions impacted you?  My illness has completely changed the course of my life.  Because of arthritis and my peripheral neuropathy, I was unable to continue my job, just 1 year after I had finished a lifetime of training for that career.  I started my own business that gave me a flexible schedule to attend doctor appointments and rest as needed.  After a year, I went back to work part-time, while keeping my own business running.  Juggling the two is difficult, but I am definitely quite happy with my career at this point in my life.

The most difficult part of my illness is the effect that it has on my family.  My thyroiditis was undiagnosed during my pregnancy with my son and we nearly lost him at 19 weeks of pregnancy.  Fortunately, after many months of bed rest, he was fine.  But I developed one autoimmune disease after another in the years that followed.  My son has never known me to be well.  He is a very active boy and I HATE that I cannot keep up with him.  My husband is a wonderful single parent when I am out of commission.  I am grateful for that, but desperately wish that I could always be there when they need me.

What would you like for other people to know about your conditions?  When you develop one autoimmune disease, you are more likely to develop another in the future.  I feel like the poster child for this statement!  I would like people to keep this in mind if they are ever diagnosed with an autoimmune disease.  Not all doctors are astute enough to make the connection if you become ill in the future that this may be another autoimmune disease.   

What would you tell someone who is newly diagnosed with your condition(s)?  You are your best advocate.  If your physician is not answering your questions or spending enough time to listen to you, start looking for someone else and do not feel guilty about it.  My biggest mistakes in managing my health have been to trust doctors who were really not dedicated to my care.  These mistakes were serious ones that negatively affected my health for several years and almost caused us to lose our son.

It is also really important for you to figure out what your insurance will and will not cover.  I have had 4 different health insurance plans since my diagnosis.  Our previous HMO and PPO plans seemed fine until they did not cover necessary procedures and medications.  We spent thousands more than the maximum out-of-pocket amounts because of the expenditures they did not cover.  Ultimately, a high deductible plan that covers everything once the out-of-pocket amount has been met has been the best value for our family.  I know exactly how much to budget for my health insurance each year, and that has been a huge relief.  Being sick and paying for health insurance is hard enough.  Fighting for coverage is a battle patients should not have to wage.

Thanks so much Jennifer!

Ali

Name: Ali
Location: New York, NY
Age: 26
Diagnosed with Ankylosing Spondylitis at age 18
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How has your condition impacted you?  I would like to say not at all, but as time goes by, I'm realizing that that might be a bit more of a lie than I've let myself believe. Being diagnosed at a younger age, and having misdiagnosis after misdiagnosis since I was thirteen, AS became a part of me that I simply dealt with; it was, and continues to be, a part of my everyday life. In a way I'm glad that there was a four year period of trying different medications, having allergic reactions to other medications, and dealing with seemingly endless questions from middle school and early high school friends. In retrospect, this helped me appreciate a concrete diagnosis that much more. It built character, I wrote my college essay on the challenges I faced, and it helped solidify a strong appreciation for the little things in life. Learning to approach any situation by looking for a silver lining, no matter what has occured, has helped put a lot of things into perspective.

What would you like for other people to know about your condition?  It's okay to ask questions, and I'd actually prefer it if you did. Going back to the diagnosis phase, things get a little hazy, but that entire period is so crucial to really understanding AS, that it might take a question or two to show me that you care to know and will try to understand - it's a common misconception that arthritis is only something that your grandparents can get. Please understand that I might look perfectly fine, but I might be incredibly fatigued. Or achy - especially when it's rainy out. However, I also hate to complain, so offering to carry something up the stairs, offering me a couch instead of the floor if I'm staying over your house, or hanging back with me when I walk just a bit slower after leaving the movies, is appreciated more than you know.

What would you like to tell someone who was recently diagnosed with your condition? First and foremost, yay! You're not in the dark anymore, and that's half the battle. Secondly, don't get discouraged. Although it might be hard to not beat yourself up over the ups and downs (it took going through an entire category of medications, endless rounds of physical therapy, multiple casts, different specialists, and finding a drug that wasn't even FDA approved back in 2003, for me to find something that gave me relief and stopped the progression of things), do the best that you can do, and give yourself a break. After you have a chance to process, well - everything - decide how you're going to treat this new aspect to your life. You don't have to suffer alone, and it's okay to ask for help. It also doesn't have to be a constant demon, as you'll get to know your body and yourself in a much deeper way than most people. Take advantage of this, as it will help you appreciate similar qualities in others - although you might not want to share things at first. I'm still coming to terms with openly talking about everything, but I'm also learning that that's okay. You'll come to notice who really sticks around, and who offers to carry that extra heavy bag. Or maybe, someday you'll be able to carry that heavy bag yourself, and these little things are the things that matter. :) 

Thank you so much Ali!