There comes a time in everyone’s life when a discovery, a piece of news, a flash of understanding changes it forever. That is what happened to me in 2015. It has been a long 18 months, a time of adjusting, of accepting and of working on moving forward. What I have to share, in the hopes that it could help others, is about living with a chronic illness.
For months, years even, I experienced all sorts of odd symptoms seemly unrelated: low-grade fever, joint pain, unexplained cough, upset stomach and on and on. Everyone told me that we all get some aches and pains as we age and we should not over think that. What do you do? you begin to doubt yourself, you begin to think everyone is right and you are just not accepting your age or the changes in your body.
I kept trying until finally, I found a doctor willing to run tests until she found what was wrong. This is most important. A doctor that listens and is willing to go along until the reason for your symptoms is found. I have been lucky with that and are doing better because of it.
Just before Christmas 2015, I received a call from my doctor’s office. She wanted to see me that afternoon. I immediately thought: this cannot be good. It wasn’t. The tests were back and the doctor said the four words that have changed my life: You have Rheumatoid Arthritis. At the moment, I was not familiar with what all that meant. Arthritis didn’t sound good, thought. Well, it was worst than that.
RA is an autoimmune disease that presents many symptoms and causes untold damage to the human body. It is in the same group as Lupus, Fibromyalgia, Crohn’s Disease and other illnesses. It causes the immune system to attack healthy tissues in your body. There is no cure and produces painful inflammation not only in the joints, but the heart, lungs, liver, stomach, kidneys and any other part of your body.
Pain is your constant companion and fatigue is ever-present. Insomnia, brain fog, dry-eyes, forgetfulness are just a few symptoms. Left untreated can be deadly, but known treatments can slow the progress and help with symptoms. Unfortunately, they could also cause untold damage since they involved chemotherapy and steroids. There most be a balance so you need to research and read, inform yourself. Ask questions and go for second opinions. When you find a doctor that understands you, keep her!!!
Most of people suffering from RA have a hard time explaining the illness. It is difficult because most of us do not look sick, we continue our lives as normally as we can and try not to complain. Besides, not everyone is comfortable to sharing everything with everyone.
Each day brings new challenges and we deal with them as best we can. We can make plans and cancel them unexpectedly. There is always a possibility of a flare that will take us to bed and keep us there for a while. A day of activity can render us useless for many days afterwards. So understanding is an important part of what our friends and loved ones can do for us.
Taking care of ourselves is a priority, more than ever. Becoming selfish is a most. You cannot help anyone if you are not fit to help yourself. You learn not to feel bad about standing your ground and saying no when needed. RA is something that will shape your days for the rest of your life.
Each one of us deals with this in our own way, but it is important to realize that we must have a plan. Make changes in our way of doing things, our diet, anything that needs changing. Keep active as much as we can, don’t give up on what we enjoy. Also we must accept that we might need help to do the smallest things and must learn to accept it. Finally, love yourself and take care.
P.S. “The beauty of life and the reality we live with” — perfectly captured in this photo of a Curaçao sunset by Neelam Melwani. Thank you!!!