What I wish you knew about Rheumatoid Disease..

When I was diagnosed with Rheumatoid Arthritis, I knew very little about what it was. I was referred to a Rheumatologist because of suspected Lupus. When R.A was mentioned, I was in shock and a bit confused. My initial thoughts were: "I thought only older people had that?" "No one else in my family has that. I thought it was supposed to be genetic? "I hurt so bad! R.A just doesn't accurately show how much pain I'm in. I thought it was just joints?" I was pretty confident my Rheumatologist was wrong. I left that office that day with several new medications and I hate to admit it, but the thought crossed my mind that he must diagnose all his patients with this. 

I was so wrong. In fact, I look back at that Rheumatologist and feel incredibly blessed to have met him. I had seen other Rheumatologists in the past and they all dismissed me. My labs just didn't meet the criteria. But this Rheumatologist was different. He believed me! He was not going to let me suffer another day longer. Since that day, I have learned so much about Rheumatoid Disease and what it REALLY means to have it. 

So, what is Rheumatoid Disease?

Rheumatoid Disease is not just limited to the joints. It is a systemic disease. Which means it can affect the entire body.  When I was first seen by the doctor, I had been experiencing pain for a few years. I had been experiencing serious fatigue and any kind of walking was very difficult for me. The pain also took a toll on my crafting. Any kind of writing or painting made my hands and wrists hurt almost immediately. I dreaded getting out of bed in the morning. Any movement hurt. I would lay in bed as long as I could until I had no choice but to get out. It was devastating to go through. 

Rheumatoid Disease is not just limited to older people either. The onset age of Rheumatoid Disease can happen at any age. Even young children can be diagnosed with Juvenile onset Rheumatoid Disease. 

I have also learned that Rheumatoid Disease is not exactly genetic. Although, having a family member with the disease increases your risk. Rheumatoid Disease has many possible causes. The environment and any toxins you are exposed to can increase your risk. Your stress levels and behavioral health can also play a role. It has been found that some infections can also increase your risk. I will never be completely sure what the cause was for mine. But I am fairly certain that stress and behavioral health were key factors in my Rheumatoid Disease. Three years after I was diagnosed, my daughter was diagnosed with Juvenile Onset Rheumatoid Arthritis. It is believed that her risk factor was raised because of genetic factors from me.

~~~~~~~

The most important thing I wish people knew about Rheumatoid Disease is the toll it takes on all parts of our lives. My family and friends did not understand how someone with Rheumatoid Disease could be so sick. They thought of me as lazy and a complainer. They would become so angry with me whenever I would have to cancel plans with them. I was living day to day. I never knew what my pain was going to be like the next day. But, just like me, they had the same beliefs I did when I was diagnosed. That only older people got the disease and it only affects the joints. 

One thing I really wished my family and friends would have done was spent some time learning about Rheumatoid Disease. I would try my best to explain it to them, but they would often become annoyed. I was experiencing so much guilt from letting them all down all the time. I quit sharing anything about it with them. 

People with R.A. are not lazy and we would do anything to not feel this way.  It's a heartbreaking life to live when you feel that poorly every single day. 

Since starting treatment, I have better days now. Not every day is a struggle. But I still have those times where I wish people had a little more grace with me. I am not looking for sympathy. But a simple gesture of understanding and forgiveness means the world to me.

~ Elizabeth (Texas RA Mom)

You can learn more here: Rheumatoid Awareness Day

Promoting Joy instead of Despair

When I was diagnosed with Rheumatoid Arthritis and Lupus, I went through a long period of depression. I had just graduated with my masters degree and I had big plans for myself. Mental health has always been a challenge for me. I have been battling depression and anxiety since I was a little girl. But this was different. I felt defeated and I honestly thought this was just going to be my life from now on. I needed to accept this new pain and accept that there is no cure. I definitely gave up for a while.

The guilt that I felt was the worst. I felt so guilty about sleeping all of the time. It seemed like every part of my body hurt now. I stayed in bed majority of the day binge watching shows to cope. At the time, I started seeing a therapist who worked with me on mindfulness and acceptance. These skills did not come easily to me. We had to change my current coping mechanisms to ones that were more beneficial to me. My go to coping skill was avoidance and distraction. Which at times can be good. But for me, it became a way for me to escape my life.

With my therapists help, we dived into dialectical behavior therapy. I had to re-train myself in the way I was thinking and coping. One of the biggest skills that I took on was promoting joy instead of despair. It is so easy to stay in that place of despair. It became comfortable for me. But it was not going to give me a life worth living. With this challenge from my therapist, I took on activities that brought me joy.

Art has always been such a healing thing for me. Even though I didn't  want  to do art. I knew I had to make myself do something. The first thing I did was make myself a crafting spot that uplifts me. I wanted to have a place where I could be alone and listen to uplifting music while I paint. I put things on the table that made me happy and smile. Even if it felt silly, I still put it out there for everyone to see. For example, I have a "joy jar" on my table filled with confetti and glitter. Such little touches meant everything to me. I also created a bag full of my books and art supplies so I could bring my joy with me wherever I went.

This intentional seeking of joy had actually increased my joy and decreased my despair.

I even started to push myself into other situations that would bring me joy. 

These small steps were giving me a life worth living. I was no longer isolating and filling my head full of despairing thoughts. I had new hope. I was also making new beautiful memories with my daughter. Which really helped me ease my guilt. 

Although I still have those days of RA pain and I feel like giving up. Just taking a few moments of doing what I love can change the entire day around. We just have to learn to push ourselves out of that comfort zone. We need to push ourselves to get out of bed and find our own joy.