My Journey with Juvenile Rheumatoid Arthritis

I was invited to share my story and experience of having JRA (Juv. Rheumatoid Arthritis). I actually had recently created a blog site where I had made the decision to write several blogs about my experiences, journey, thoughts and such pertaining to RA. It’s my wish to share my experiences and thoughts in hopes to bring awareness to others who do not quite understand RA. This is one thing that is mentioned a lot in community forums I’ve visited, where those who suffer from RA are often put in the spotlight in terms of criticism, discrimination, judgement and even relationships broken apart. So I created a blog site in hopes to help everyone see RA from my perspective and 1st hand experience. I’m assuming I’m not permitted to share my blog site here and so I’ll leave that part out.

The struggles of living with a hidden condition

I often give talks and speak in public to youth about my experiences and journey, hoping to shed light on what we go through. It’s important to extend support and help not only to those who suffer from rheumatoid arthritis but also to anyone facing health challenges. Individuals battling cancer, for example, deserve our friendship and care.

I feel that many people are unaware of various health conditions and do not fully understand the hardships we endure. They see someone who doesn’t appear injured, someone who looks healthy, and assume that person is physically capable of lifting, running, and doing chores. What they fail to recognize is what’s going on inside our bodies—those hidden struggles. People like me may have a high pain tolerance and can easily mask their pain, which makes it even harder for others to understand that we’re not always able to participate in physical activities.

I hide my pain for several reasons. I feel embarrassed, fear being judged, and recognize that many believe someone in their early twenties shouldn't be in pain or have any kind of disability. I often want to keep my struggles away from others, so I grit my teeth and bear the pain as best as I can to get through my day.

Facing emotional and financial challenges

For this reason I write blogs, I write articles, I do public speaking and public discussions. To bring awareness to everyone, so everyone will one day understand what we are dealing with and how others should be caring and respectful to those who are not perfect, those who are flawed, those who are, in my opinion, cursed. To me, it is a curse. I didn’t ask for it, I certainly did not want it, but I was destined to have it for most of my adult life. I always have told others that I feel I’m meant to have it to help me open my eyes and to realize what I’m doing to my health and to turn that around.

I talk about this very thing in one of my blogs. I feel my body has given me a metaphorical slap upside the back of my head for what I’ve done to my health and body in the past. It’s now opened my eyes to help me realize what I’m doing to myself and to change that. I wasn’t the healthiest in my youth, I never cared for vitamins, minerals, fruits, vegetables, herbs, you name it. I only cared for sodas, sugar, fats, junk food… Now that I have incorporated all those things back into my life due to the slap upside the head, I am now in remission.

The long road to remission

Getting into remission was a very long journey for me—over 20 years. I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) when I was in my early twenties. Before my diagnosis, I had suffered from pain and inflammation for about one to two years, going from doctor to doctor to figure out what was wrong and why I was in such pain. Many doctors shrugged it off, thinking I was just experiencing discomfort from my job as a pizza delivery person, where I tossed pizzas all day and washed pans frequently.

It was only through a doctor with experience in rheumatology that I finally received the attention I needed. He recognized the signs and symptoms I was displaying and performed the necessary tests, ultimately diagnosing me with JRA. I often reflect on how fortunate I am that he took the time to investigate further; if it weren't for him, I might not be here today to share my story.

My family became my lifeline

The doctor who diagnosed me was able to help me regain some normal functionality through medications, specifically prednisone and methotrexate. The prednisone improved my appearance, making me look more human compared to the skeletal features I had before starting treatment. It brought me to about 40% of what could be considered a normal life for someone dealing with serious rheumatoid arthritis (RA) issues.

Despite these challenges, I was finally receiving the medical attention I desperately needed. Over time, the costs of medication, rheumatologist appointments, and related expenses became quite high. I faced a difficult decision: either put food on the table and pay bills while dealing with pain and risking a return to my previous state, or continue with medications and struggle to make ends meet financially.

In my opinion, the man of the house should be the one who supports the family—making the most money, paying the bills, putting food on the table, and taking care of chores around the house and yard. However, in my situation, it was the opposite. My wife did all of that, and it hurt me more than anyone could ever imagine.

The turning point: Exploring supplements and holistic healing

My wife and I had a close friend that worked at a supplement company and had encouraged me to try some of their supplements. I had tried several supplements, ointments, patches and such before with very little success, but I was at the point in my life where I’d try just about anything if there’s any chance it would help.

I tried the supplements our friend told me to take. At first I didn’t notice much of a difference and felt as though it was yet another supplement that didn’t do anything for me. She convinced me to stay on them though for a few months and surprisingly I started to notice a change for the better.

Regaining control through nutrition and lifestyle changes

Around that same time, I completely stopped taking medications and shifted my focus entirely to supplementation, along with changing my diet and lifestyle choices. Today, I can walk, move, and operate like I hadn’t been able to in years. I can finally let my wife relax when she’s home, as I take care of the cooking, cleaning, and other household tasks.

Fear and stress were the true enemies and culprits before my remission. I was plagued by the fear of dying, fear of pain, and fear of becoming a burden to my wife and kids. This fear led to stress, which in turn caused more pain and inflammation.

The importance of working with healthcare providers

In conclusion of this lengthy story, I want to emphasize, before moderators and admins possibly block, ban, or remove this post and my profile, that I am not making any claims. I am not asserting that nutrition and nutrients work universally. Each person’s body and chemistry are unique.

I strongly urge anyone suffering from a disability or health condition to seek the guidance of a healthcare provider and collaborate with them regarding their condition.

Thank you for taking the time to read my story. I love sharing my experiences and journey with rheumatoid arthritis (RA). I’m grateful to be alive and thrilled to be a part of others' lives.