My Life With Rheumatoid Arthritis

How do I begin? What do I cover? When I ask myself these questions, I realize how much I have to say after so many years. That's 63 years; all but one year of my life!

Early onset of RA

I was diagnosed with Juvenile Rheumatoid Arthritis as an infant after I stopped trying to stand up, after I cried every time my knee was bent or straightened, and after a very invasive diagnostic procedure that left me with the long scar on the inside of my right leg at my knee, (which embarrassed me for most of my childhood).

After the diagnosis, I was fortunate because I was able to wear a steel leg brace with an attached shoe (there was no Velcro brace yet), started on a large dose of cortisone, and learned to walk.

According to my parents, I learned to walk right on schedule and was able to walk unassisted without the brace by my second birthday.

There's even a photograph of me standing without the brace celebrating my birthday looking like a "normal" child!

Well, I wish I could end this introduction post by saying that everything was as great as it looked in the picture and that my health got better from there, but that's not what happened at all.

No, instead, that was just the beginning of my 64-year-old journey of the many, many ups and downs in my life with rheumatoid arthritis and other issues along the way.

I will write about these in later posts, since this is my "official" introduction post for the group and I want to keep it that way.

Telling my RA story

So, I have decided to share my story in separate "manageable" posts for several reasons:

1. I don't want to get overwhelmed and decide not to write, like I've been doing for years.
2. I need very much to connect with others (you), and not feel so isolated away from people who understand what living with Rheumatoid Arthritis is like.
3. Hopefully, be able to help some of you in your journeys by sharing what I have gone through and survived and maybe making things easier for you deal with when you know you are not alone and can make it through the tough things, too.
4. Receive the input that you share back to me with your experiences and/or suggestions, so that I won't feel so alone anymore.

All of this is up to me! I have been wishing everyday for years, for the strength to keep going, which so far, I have been able to do.

But the isolation from the pandemic really hit me hard, because I couldn't go out of the house to see my counselor and doctors in person anymore.

My isolating behavior was no longer by my choice not to go anywhere! It was now because of the danger outside of my home, something that could potentially kill me that kept me inside.

That's been new for me and fortunately a great learning experience. I had to learn to share my health issues with my doctors and counselor online in zoom calls.

I realized how much it helped me to virtually connect with them without having to leave home to do it. Then, right after this realization, out of the blue (coincidence?), I was sent a post about RheumatoidArthritis.Net and I decided to check them out.

Community matters when managing RA

After reading some of the stories and articles that are available.... here I am!

The forced isolation from the pandemic has shown me how important the connection to other people is and that I really don't have to be alone anymore, I can connect online to all of you without having to leave my house.

So, right now I have decided that I am willing to be vulnerable and connect with you so that we can be on this life journey together, all I have to do is hit the submit button and post this ...