Monday, April 20, 2015

Navel Gazing or Being Thankful for RA?

I didn't find other people with RA until I was pretty much an adult. When I was a kid The Arthritis Foundation was not doing a whole lot for kids, the one meeting that I actually remember going to was full of grumpy old men with osteoarthritis. I was definitely not interested in any conversation with them. Not surprisingly we didn't go back.

I did however live with someone who had inflammatory arthritis, my dad has Psoriatic arthritis. He was diagnosed about 10 years after me. We never compared or even talked much about it, maybe because his was different or he was older, I'm not sure why.

So I basically grew up on my own with JA and then RA as an adult. When I was 27, I finally started to follow a newsgroup that was full of people my age and older. We became very much like a family and even had gimpfests. I didn't have anyone that lived close to me but didn't mind traveling to a gimpfest near me or having one of my own. It was so awesome to finally have someone say "me too." It was also great to see how different we all were. When the biologics came out and everyone reacted differently it was a big eye opener too,

Pretty much after I had my daughter I stopped following the group simply because I didn't have time anymore, my life was about my baby and she took up most of it. Sadly, pregnancy did not help my RA much. After remission before I got pregnant and a pregnancy in remission when my RA came roaring back and stayed and wouldn't respond to any medicine, I started looking online as slowly my friends began to pull away one by one.

This time instead of joining a group I created my own page and blog. Through these efforts I have met so many people that have helped me by teaching me lessons. Whether they were good or bad depended on the person, but I always tried to take away something from each relationship.

I have always said that if I could give up RA and have my health back  I would in a hot minute. There was mention of something like this in my Twitter feed today. I said I would take my health any day over the friendships I have made, I really started to think about it. I have come close enough to a few people that I have actually traveled to meet them. I have been blessed to have more helpful friends than friends that I have learned lessons from in a bad way. I guess what I'm saying is that I have been extremely lucky with the people who have crossed my path and I'm very thankful to be walking this journey with them (ok, I would like to say I was running but who am I kidding).

For the first time in my life I'm split 50/50 over whether I would really take my health over the friendships I have made. I can't imagine not texting with Lorraine every night, or messaging frantically with Neen, or the indignation that Bridget gets when she is trying to help me write a letter of complaint. Jacque telling me that I was made for this "job" or the hundreds of other people I talk with every day just so I can hear a "me too". All of these people have become key players in my life as I traverse this disease step by step. They have become my friends even though my husband calls them "imaginary" (which I really hate). They have been here when all of my real life friends have left because having an ill friend is just not that much fun anymore. They have virtually held my hand through scary procedures, listened to me complain for hours, patted me on the back when things were bad and picked me up off the floor when I crashed and burned. They have believed in me when I didn't believe in myself. They've helped me to get through many difficult times and have held me up when I couldn't do it myself.

They may" live" in my computer but I am just as invested in their lives as a friend that lives down the street. I'm friends with their spouses, kids and anyone else that has anything to do with them. In fact, in 3 weeks I will be flying to CA to meet one of them for the first time, and I'm so excited.

So, for the first time I would say no, I wouldn't give up my friends for my health. If I was healthy, yes my life would be different. I would be working or volunteering, I would have more real life friends but I doubt they would be real like the friendships I have found with people that have similar health issues. Not as deep, understanding or open. I would miss that tremendously.

RA has taught me a lot of lessons, some good and a lot horrible. It has also brought good things to my life like the ability to slow down and take it all in, the ability to run around trying to get everything in, just in case I don't have as much time as I had hoped. It's taught me to be thankful for the things I have and not worry about the things I don't. Lastly, it's taught me to be thankful for the people around me because it could be much worse doing this on my own. I'm so thankful for the day I decided I could do this, as a "leader" I have had access to more people than I ever would have as as a member of a group and I'm grateful that people feel they can talk to me and I can help them in some way.

No, I wouldn't give up the friendships but I sure wish the RA could simmer down a bit, or even go into remission...what do you think body, huh?

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