So… I’m trying to figure out the “it” that people are reacting to. My diagnosis… my situation… my life… This one is kind of tough. I’m sitting in the chilly (it was in the 40s Fahrenheit this morning) foggy morning working from home. There is a fire in the chiminea and I’m missing people a lot this morning. Sometimes the quiet is too overwhelming.
Family… for the most part my family is my cheering section. They sometimes really really hate it when I hurt and am exhausted but they are my best cheerers. I think it helps that we are all each other’s cheer leaders.
The diagnosis? The sentiment was kind of… oh wow… I guess it was real. Once I had a new reality… it was all very… real… Sometimes (when I’m having kind of a bad spell) I hear that I’m going to end up on disability. I’m not planning on it. At least not any time in the foreseeable future.
Some people seem to think that it doesn’t matter what is wrong with me, I should still be able to squeeze in whatever they need to have done. Some people think that when I got a new normal I kind of gave up feelings as well. I guess trying to live as normal a life, publicly, as I can meant that I can put in 20 hour days to keep up with all of the things that they think I should keep up with and that any time I have that is not dedicated ENTIRELY to work should be dedicated entirely to… well… work…
So, I guess all of my family pretty much treat me the way that they treated me before. Which is good. Mostly.
I’m Aspie. I really don’t have a lot of FRIENDS… not the way that I see other people having friends. Most of my friends live inside of my technology. Which for an Aspie is kind of good.
People I worked with, when they found out, either said things like…
OH MY GOD, you poor thing. I hope it isn’t rheumatoid arthritis that would just be horrible
OH MY GOD, you too? what are you on, how do you deal with <insert something here>
It was interesting to find out how many people I worked with in Texas were so much like me. It was disheartening to find out that some of the neat people I worked with (HI Terri) were learning that they have it too. And the diagnosis hit them like a ton of bricks. But it made my heart feel better to know I could help. Sometimes I wonder who I work with now is like me. Sometimes I sit in meetings and think that there are probably people like me right there in the room. Sometimes I realize that I’m really weird.
Electronically… my friends are incredible. When I need a smile, they help me smile.
I think the best thing about my electronic friends and my diagnosis is… when people find out that it’s part of them… part of their new reality… They know they can ask questions and vent to me and that I understand.
Updated: September 20, 2014
Author: Figment of Fitness
Keep the dreams alive
While I wouldn’t wish RA on my worst enemy, I am glad that someone as strong as you walked this path before me, because you have been so incredibly helpful (and patient:) with all of my thousands of questions. Hope you have a fantabulous weekend and get the opportunity to enjoy the beautiful, fall weather -in a pain free kinda way.
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It’s funny… I’ve never really considered myself to be strong (especially when I’m walking out of a haunted house in tears because it never dawned on me that they might have an electric fence battery hooked up to the corners of the walls in the pitch black maze)… but I seem to have that outward appearance.
I’m glad I can help. I’m glad I can be who you need me to be when you need me to be it. I would never ever wish RA on anyone… but if I had to have something, I guess this was my something.
My Rheumy thought it was funny… I told her that fall and cold really kind of agree with my RA. And it really does. I hate having my hands freezing cold (or more specifically my right hand freezing cold and my left hand perfectly normal) but I’m loving fall!