Diagnosis/Diagnoses: Juvenile Rheumatoid Arthritis which is not so “juvenile” anymore since it has progressed well into my young adult years.
Bio (Who are you? What do you do? Tell me about yourself):
Currently slaying RA all day every day, one day at a time. I am also a writer, aspiring author, awareness and patient advocate and a future integrative nutrition health coach.
Is there anything that helps you rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have)
A whole 360-degree approach that includes conventional medication, proper diet, nutrition, and avoiding various food intolerances and sensitivities that aggravate my arthritis has helped. Integrative and functional medicine doctors have addressed root issues and treatments such as supplements, herbals, teas, essential oils, aromatherapy, massage, reflexology, acupuncture, osteopathy- combat any pain, stiffness, and inflammation. To add on to that list; hot and cold packs, physical and occupational therapists, and spiritual healers have all found a way into my life.
Family, enjoying the small things in life such as my roasted dandelion “fake coffee” in the morning, going to the movies, dancing, social outings, waking up in the morning and catching the sunrise and watching the sunset, random long drives, and just living life despite any limitations. I am praying for days that get simpler, my medical and health “to do lists” gets shorter and frequent doctor appointments becomes a thing of the past. I am working towards the day that I can look back at this question and say, “The only thing that helps me rise above RA is total long-lasting remission and a cure.” Until then, I will keep living with RA one day at a time.
Above all else, family, friends, support, connection, love, enjoying the small things in life such as my roasted dandelion “fake coffee” in the morning, going to the movies, dancing, social outings, waking up in the morning and catching the sunrise and watching the sunset, random long drives, blasting music, and just living life to the fullest that I can with RA. Anything that can give me a sense of normalcy, peace and a break from the harsh reality I have to wake up to every day, helps me to keep rising above any and all obstacles RA may decide to throw my way. To say these have been in my arsenal through my whole journey is not the case but it is just a glimpse as to what I have found works for me now. I am all about lessening my load but at the moment it doesn’t seem feasible. I am praying for the day that my days get simpler, my medical and health “to do lists” gets shorter and frequent doctor appointments becomes a thing of the past. I am hoping for the day I can look back at this question and say, “The only thing that helps me rise above RA is not having it at all anymore.” Until then I will keep living with RA one day at a time.
What does life look like at its best with your condition? (Describe a what a good day looks like)
A good day is a cherished day. Waking up with no pain under my feet, swelling or stiffness in my body sets me up to be a happy camper to start off a good day. Lately, it has taken me awhile to reach a point of continual good days. A good day is a day when I can just do me. No doctor appointments, no obligations. Start off taking some self-care “me” time, a hot shower, face mask, Epsom salt or clay bath, meditation and prayer to calm my mind, eat a good home cooked meal, catch up on a TV show, go work out, and spend time with loved ones. A good day is when I don’t have to plan around my illness or run around- which is often.
What challenges have you faced with your condition?
My two biggest flare ups in 2010 and 2013. Once after I was given a cortisone injection throughout my whole body that left me in widespread body pain. Second time I was coming off a biologic and ended up being bedridden for a whole week with extreme swelling in every single joint, it was the first time ever in my life that I didn’t think I was going to make it. A few other challenges are having a total knee replacement at the age of 29, not being understood, the loneliness and isolation of the disease, having to explain things I can or can’t do, having doctors ignore my symptoms, social security disability benefit issues of being- denied, accepted, cut then accepted again, health care coverage, finding a compassionate doctor who truly understands- it took me until a few years ago to find this.
They say our life experiences shape who we are. How has your condition molded you into the person you are today? How has it inspired you and what strengths have you gained from your health journey?
It sounds cliché but I am stronger. After a lot of life-changing challenges, I have grown especially mentally and spiritually stronger. It has brought me closer to my faith and led me to a deeper soul search for what I want out of my life. It has inspired me to find my passion for writing again, creative expression and helping people. I also gained more courage, patience, and knowledge.
What is the one life motto or mantra that helps you to keep fighting/going on your condition and why?
“Just keep swimming” -Dory from the movie, Finding Dory is one of my absolute favorites. Dory is the epitome of not giving up. She had such drive to set out to do the very things people were telling her she couldn’t do. She believed in herself and her tenacity along with a good caring heart helped her along the way, even in the scariest and loneliest of times. Dory didn’t let fear, her disability and condition stop her. Anyone whom she came across gained her wisdom and was a ray of light to others. This movie has a strong message for those of us living with illness and disability. May we all continue to, “Just Keep Swimming” like Dory did.