Life After Diagnosis: Jessica Kendall James on Redefining A New Healthy

Jessica Kendall James is the chronic illness lifestyle blogger and creator behind OurNewHealthy.com and The Spoonie Planner, living her life to the fullest and seeking to redefine “healthy” with multiple chronic illnesses. After spending many years in isolation while struggling to find a proper diagnosis, Jessica created The Spoonie Planner to lift herself back up and find diagnoses, treatment, and a life beyond just survival. It was in seeing how it empowered her that Jessica realized The Spoonie Planner might be able to help others too, and so she created Our New Healthy, a lifestyle brand and blog for the chronically ill. And this December, with the help of her Spoonie Community, she was able to launch the brand’s first tool, The Spoonie Planner.

Tell us a little about yourself.

Hi, I’m Jessica! I am 25 years old and I love all things ocean, nature, and adventure-related! My greatest gift in life is my friendships, and my deepest passion lies in a few different arenas including organic beauty and lifestyle, patient empowerment, and the organization aisle at Target.

I also happen to live with 8 main chronic illnesses, including EDS Type 3, POTS, Gastroparesis, MCAD, Ankylosing Spondylitis, Celiac Disease, Hypothyroid, and TMD, among other underlying diseases and disorders. I was born with EDS Type 3, that is for certain, but many of my other illnesses could have been avoided with proper early diagnoses of my EDS. You can learn more about me and my journey at OurNewHealthy.com !

 

When did you first get sick?

I was born sick. From the time I was an infant, there were everyday signs that I was never going to be normal. This was both a curse and a gift in my life. I was never “normal”, so I don’t really know what “normal” is, but I was treated as if I was normal from the very beginning. Because of this, I struggled with a lot of self-disappointment until I was diagnosed because I didn’t understand why life was so much more difficult for me.

For the most part though, I was what you would consider “high functioning” until about 9 years old when I stopped being able to keep food down. From there I was very ill and in and out of the hospital, and by age 22 I was completely bedridden. Now that I am properly diagnosed and with the help of an amazing medical team with Dr. Shariar Cohen at the top, I am high functioning again. This article addresses a little bit what it was like for me to grow up undiagnosed.

 

In what ways does having multiple chronic diseases affect your daily life?

Living life as a “Spoonie” or someone with a chronic illness, affects every single move I make from the moment I wake up until I lay my head back on the pillow at night. I wake up with a set number of “spoons,” or energy, each day, and I never know how many that will be. I have to live my life one spoon, or one task, at a time and just put one foot in front of the other. Everything I do has to be altered from the way a “normal” person does it.

I must constantly have faith and remind myself every day that “this too shall pass.” The good, the bad, and the ugly in life, as in illness, is never permanent. I’ve learned to approach my daily life moment by moment really, embracing the good and having faith through the bad.

But on the flip side of that, I also must balance and plan ahead more diligently than someone without a chronic illness so that I make the most of my spoons every day. I can do everything anyone without an illness can do, I just have to do it differently and with a lot more effort and planning.

 

How do you handle everyday practical problems?

That’s a really great question, because everything I do is more complicated and takes twice as long as the average person. Ask my friends; it can be very frustrating sometimes for them too. I guess in short, I handle practical life with a whole lot of laughter. A good sense of humour helps me to accept how ridiculously tough certain simple tasks can be.

And then of course there’s patience, pacing, and acceptance. Have patience in your body, it is doing it’s best, and pace yourself because the tortoise always beats the hare. Learn to rest, not give up. Accept that you have limitations so that you can learn how to utilize tools to overcome them. Denial won’t get you anywhere, but good tools will. Tools are what set man apart from almost every other animal (except for monkeys, monkeys are pretty cool.)

 

Life After Diagnosis: Jessica Kendall James on Redefining A New Healthy | The Health Sessions

 

Do you have any tips on coping with symptoms? Is there anything you can do to prevent relapses?

I believe very strongly in documenting your diagnoses, symptoms, and other health history in a way that allows you to continuously increase the speed at which you can spot the signs of flare-ups and treat them before they become full-blown. This approach to my healthcare has quite literally saved my life as well as my mother’s life, and I am now in a place where I can stay on top of my symptoms enough that they never take me down completely anymore. I use my Spoonie Planner Medical Diary in order to do this, but any way in which you can organize your health history that works for you is fantastic. Do it.

As far as coping with symptoms goes, recognize and embrace the power of natural medicine. There is a huge negative stigma surrounding the natural side of healthcare. I think many people associate it with the “hippie culture”. But there’s just no question that it has insurmountably improved my symptoms. The Autoimmune Protocol Paleo Diet, Cryotherapy, cold showers, (safe, controlled) exercise, and a completely organic and natural lifestyle from the skincare and makeup I use to my laundry detergent, have all together made my day-to-day symptoms manageable and in some cases non-existent. They have not cured me, as I am chronically ill, and if I stopped them tomorrow I’d be back at square one by next month, but they treat and even prevent many of my day-to-say symptoms and allow me to live a higher quality of life.

I also believe strongly in treating causes rather than symptoms as much as possible when discussing medication, because medications can cause so many symptoms on their own. That isn’t to say I don’t believe in medication. In fact, I believe strongly in utilizing modern medicine, and Plaquenil alone was powerful enough to give me my “brain” back from my illness so that I could think straight to write this answer. I just believe in knowing exactly what medications you are on and why, and making sure that every medication’s benefits outweigh their side effects for you personally. The Spoonie Planner Medical Diary can also help a lot with this.

 

How do you keep joy in your life on a day-to-day basis?

For me personally, my faith is a huge part of where my joy comes from. That being said, I don’t want to impose my beliefs onto anyone else so we won’t go into detail on that right now. I also find a great deal of joy in the people around me. When I was left with nothing, I learned what mattered most, and that is people. Surround yourself with people who lift you up, not bring you down, and know that even if you can only save one spoon a week for a loved one, that is enough. Utilize your Spoonie Planner monthly goal sheet to reach out to 4 people in your life, or whom you’d like in your life, each month. Then find 4 new things you want to try and 4 things that inspire you. Save just enough spoons to make it to 4 events that you’d like to go to, and focus on just 4 goals you’d like to accomplish. I know it seems like a lot, but even if you just reach out to 1 person or find one new thing in this beautiful world that inspires you, that is enough to see why you matter and why this world is a place worth living in.

 

What would you like to tell others who are diagnosed with chronic illness?

There is life after diagnosis, your illness does not define you, you are your own best healthcare advocate, and this too shall pass. Feel free to reach out to me any time on Facebook, Twitter, Instagram or my website!

 

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