new website!

i have a new website! 

http://www.jodimckee.com/ is up and running.  you can find the portrait project here.  please update your RSS feeds!

Katie

Name: Katie
Location: San Francisco, CA
Age 31
Diagnosed with Crohn’s Disease at age 24 (after nearly 2 years of struggling)
Diagnosed with Wegener’s Disease at age 29

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How have your conditions impacted you?  I’ve always maintained this life rule that you never know what anyone is going through — even if you know them extremely well. Becoming ill made me realize just how true this was. I went from being a scholarship athlete to being too weak and ill to get out of bed some mornings. With silent illnesses like Crohn’s and Wegener’s, no one realizes just how sick you truly are until you end up in the hospital. To boot, with the frequent weight loss both diseases enable, I’ve had people tell me “You look amazing!” when I was feeling awful. That’s just strange (and kind of hilarious) to me.

My conditions have also taught me the value of being hyper-aware of how I treat my body — and subsequently have made me very resentful of people who don’t treat theirs with respect (unfair, I know, but true nevertheless). I was vehemently anti-smoking before open lung surgery, but after — my feelings about the absurdity of smoking cigarettes are...ineffable. No one wants tubes in their lungs — no one. I can’t say that enough. I don’t want to dictate anyone’s life choices, but I also don’t want anyone to enable unnecessary damage and pain to themselves -- especially those I know and love.

What would you like for other people to know about your conditions?  You can and will be an extraordinary person even with these kinds of afflictions if you truly want to be. Everyone is going through something, even if you aren’t aware of it -- mine just happens to be bad health.

Also, share the knowledge you gain through your experience! You can help those around you who may be going through something similar in ways you can’t imagine. I feel very lucky to be at ease with a dialogue about Crohn’s and Wegener’s — it helps me to navigate toward a healthier life and possibly a cure for both some day (fingers crossed).

What would you like to tell  someone who is recently diagnosed with your condition(s)?  Everyone will try and give you their version of how to “cure” your ailment — but the honest to goodness truth is, we are all different. People will constantly say “You can eat that?” or “You can do that?” -- you have to know that they likely only have your best interest at heart (no matter how annoying it gets!).  I get deathly ill if I eat peanuts, but I have lots of friends with Crohn’s disease who can eat peanuts until the cows come home.

Tell those you love when you’re not feeling well -- it enables them to give you the support you need. (I still struggle with this though — because I don’t want people to label me as “sick.”)

Katie's favorite quotes:
“Our lives begin to end the day we remain silent about things that matter.” —Martin Luther King Jr.
“Be kind whenever possible. It is always possible.” —Dalai Lama


Thank you so much Katie!
Also, please be sure to visit Katie's blog, Chronic Style.

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!

Lori

Name: Lori

Location: Ronkonkoma, NY

Age: 44

Diagnosed with Rheumatoid Arthritis in 2001.  Also suffers from Fibromyalgia.

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How has your condition impacted you?  Professionally, it has taken away the ability to work full-time which has resulted in my giving up a fairly well-paying job for part-time work.  Because I am limited in energy, focus and physical ability it has led me to spend my time on the things that matter to my heart. Where I once worked in “Corporate America”, I now work at Non-Profit Agencies. Working with my church’s Food Pantry and The Foundation for Sight and Sound has allowed me to use my professional talents for people who need it the most. Also, it’s NOT 9-5, so I can work as my health permits.

Personally, it has highlighted how amazing my family is. When I let go of control of how everything gets done and allow my son, daughter or husband to help in their own way, they can be part of the solution. When my son was only 12, he helped give me injections.  My daughter travels with me and helps me with all the crazy plans I make.  My husband does dishes and shopping and ANYTHING he can think of. Empowering them makes us all feel better.

Finally, this condition does not fit my personality. It is painful and I am not one to wallow or “give in” when my body wants to stop. I am still not sure how to deal with it all. It is a continual lesson in acceptance and it has made me look at how hard I am on myself. No one expects as much from me as I do.

The impact on my life is a moving target but so far, I’m still taking shots!

What would you want people to know about your condition? Apparently, not much - It has taken me years to talk about what goes on in my body and when it does come out I am overwhelmed with worry about letting people down.  Having said that - I want other people dealing with RA and/or fibromyalgia to know they can talk to me about what they are going through. Some of the greatest healing can come from sharing.  

What would you want to tell someone who is newly diagnosed with your condition? Try and be kind to yourself. There is only so much you can do to feel normal. Keep changing doctors until you find someone who shares your vision for your future health. Whenever I am faced with a new barrier – a new joint inflamed, an existing treatment stops working, a new surgery becomes necessary – I fight with all my strength to get back to “normal”, but if the fight falls short of the mark, I’ve learned that by accepting the situation a new possibility will open up. The thoughts in my stubborn brain will change and answers will present themselves in ways that I could not have been imagined.

Lori's favorite quote:  "Do what you can, with what you have, where you are." -- Theodore Roosevelt 

Thank you so much Lori!  

Betsy

Name: Betsy
Location: Rochester, MN
Age: 32
Diagnosed with Ankylosing Spondylitis at age 31

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How has your condition impacted you?  It's still hard for me to take in that Spondylitis is something I have, and am going to have to deal with going forward. I was in denial for quite some time. I hoped that I was just misdiagnosed again. It has only been recently that I have come to a point of acceptance and understanding to tell people outside of my intimate circle of friends and family. I am learning who my true friends are and that not every one can handle my new reality. I am learning that I have to create balance in my life and carefully choose how I spend my energy. I am constantly working to reframe my grief for the things I cannot do, but instead look for new ways to find joy. My condition really has impacted how I view and prioritize my life, more than the obvious physical obstacles. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am stiff in the morning and quite fatigued, which is difficult as a mother of 2 young boys.

What would you like for other people to know about your condition?  First, if you have not heard of this disease check out the following website to learn the basics: www.stopas.org. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis, which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow progression or even bring a cure.

What would you tell someone who is newly diagnosed with your condition?  There is hope. There are many approaches to treating this disease.  I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with.

I am a mother of 2 young boys and was unable to accept the textbook answers I was getting from the first rheumatologist I saw. I was uncomfortable with a symptoms based approach. So I did my research, looked at clinical trials, read endless scientific journal articles, and found a rheumatologist who had the approach I desired, to treat the disease systemically and try to slow or halt progression. There are endless treatment and lifestyle choices to explore.

When I shared my diagnosis with my aunt, she sent me a beautiful note. I hope this excerpt helps you as it has aided me in staying grounded on even the most painful days, “I believe that God gives us life with a purpose attached. And that purpose, whatever it may be for each of us, still remains no matter the circumstances. And sometimes difficult circumstances can even bring our purpose into sharper focus.”

Thank you so much Betsy!!

(And thanks to Maya for introducing us!)