Alright. I’ve had like two do overs this week with this blog’o’mine.
First, I wrote a fun post about Christmas and instead of publishing it, I somehow left it in draft. And now I don’t like it. So, much like Kanye, Imma let you finish…but first Imma pour a glass of wine, a glass of eggnog, grab a big handful of candy cane Hershey kisses and do some rewrites. Kidding about the eggnog, when you finally get to see my holiday post, you will learn that I don’t drink substances that resemble snot.
Second, I was all geared up to write about how I’m taking back cooking. I’ve been spending a lot of time hunting down cheap yet locally sourced foods and making good smelling, fantastic tasting, immune system building dishes that I’ve really taken a lot of pride in both eating and allowing myself the time to enjoy the process. So what happened here?
Well. Let’s just say that there’s a well known foodie blogger whose blog I frequent and quite serendipitously, our paths crossed recently. She is not any sort of disease blogger so don’t point fingers. And, knowing I shouldn’t type this but also knowing I didn’t identify myself through my blog or as a reader, let’s just say that said meeting made an impression.
So now I don’t want to write about that either.
So tonight I am going back to a basic. I was discussing this earlier today and I think it is quite apropos for where I am right now.
I have absolutely no control over the RA diagnosis but I have complete control over my reaction.
I feel like I’ve done a good job at channeling my reaction into work with the ACR, AF, and I LOVE my work with IAAM. I also love blogging and getting to know my readers. But what I’ve realized…and I’m sure my last post is reflecting this too…is that I’ve thrown myself into ACTION to control my reaction and somewhat lost sight of me.
In a conversation with a close friend recently, I shared some feelings of confusion with her and her response, after a pause, was ‘You realize what you’re resisting is being happy, right?’
Shocked.
I’d never thought about it but part of the reaction we can and need tocontrol is allowing ourselves to be happy.
I do understand how we lose sight. You wrap your brain around a diagnosis, medications, family and friend reactions. Once you get those settled and decide you want to ‘make a difference,’ your disease becomes about that. In addition, I almost feel guilty admitting to being happy while living with RA.
I think as we learn our new identities as autoimmune arthritis patients, we are in some ways expected to take on the stereotype of the long suffering martyr patient. I wonder if we, as patients who don’t look sick, feel even more threatened by misunderstanding if we look and act and live our lives as HAPPY people? You say you hurt and you say you’re on this serious medicine but you’re smiling and I think you mean it?
Hence the guilt.
I think that’s terribly unfair. RA gets enough of me. Money, time, money, health, money, pain, and did I mention money?
I realize that being happy doesn’t happen overnight but as of now, I’m taking back the control to allow myself that if I so desire. And I do!
What do you think? Do you feel like me and feel guilt when you should be happy? Or am I just especially tangled for an RA patient?
Don’t answer that second part.
All Flared Up: An Arthritis Blog 
Ooh er, that’s a deep one … but you know what? I think you have a point. I’m pretty happy, and not ‘especially tangled’ I don’t think – and yet, I can identify with that guilt/pain/smiling/don’t believe you thing completely! And as for the stereotype of the long-suffering matyr, yep there are people who seem to feel the need to push me that way – them’as don’t have RA of course – but maybe this is balanced by the fact that in the RA blogging community I feel like a bit of a joke ’cause my RA is so mild!!
Confused of Norfolk a.k.a. Polly
Hi, I just started to read your blog as part of my summer of devouring RA blogs after getting diagnosed in July. Glad you’re somewhat actively blogging again!
I ended up going to therapy for a little bit after the diagnosis to deal with it, but then I had a similar realization. I am not my body or my disease. It’s just a part of me and I have to live with it. I’m fortunate that the DMARDs are working really well finally and I feel kind of great now (especially considering I couldn’t even shift my car 6 months ago). My friends don’t really understand what I’ve been diagnosed with. They kind of get it’s systemic and not that thing their grandma has, but they don’t really understand that the methotrexate and all that isn’t just some temporary thing. They all think I’m better because I seem better and are confused when they see me wash down a handful of pills at dinner. I guess it was easier to think of me as sick when I was obviously very sick.
I don’t think my family/loved ones fully understand my RA diagnosis. As one of my children said once, well, you’re not sick – you just have RA. Whatever that means. I have been miserable for about the past 15 days – and then today – I feel so good…I am almost afraid to even say it. I feel good!!!!!
I know this feeling so well. Out of no where when I was 15 I developed rheumatoid and I took medications for about a year but I hated how the steroids made me swollen with zits. I haven’t been on medications for over a year because I hate putting those chemicals in my body. Now I realize it is my only choice unless I want all my joints to be destroyed. My wrist has a huge lump in it squeezing a nerve that needs surgery. I already have joint damage. I cant do the physical activities i want to. Every day I don’t want to believe I feel like a grandma at 19. No one understands because they don’t live with it (besides the people that do of course) but I have not met anyone my age I can relate to. Hopeless is how I feel. Its either medications or joint damage. Not fair. I try to stay optimistic but it really is hard. I am in college for social work and am working so my life is chaotic. But I dont pretend to be happy, because i am. Its just that deep down there is a sorrow that takes my hope away. I have blue cross blue shield and I saw in one of your blogs you said you hated it, why? And how to afford doctor bills and food and rent and bills? Sorry for venting, but this is the first blog page I came across. I have only had this for 4 years and i feel like im 40 years older. Any advice or insight or resources would be great.
Hi Kelsie! Yes, it kinda sucks a lot! I’ve had a hard time finding people who understand and just as hard of a time trying to explain it to friends who see me fine one day and hear that I hurt and am exhausted the next. And amen on the drugs- I hate hate hate them but I don’t hate them as much as I fear life without them. I work full time so it’s certainly a hard balance. I hate Blue Cross because they just make everything so difficult. When I was on Cigna, my dr sent in paperwork for let’s say approval to start Orencia. Cigna reviews the records and says ok. Blue Cross will sit on them, say they never got them, repeat this three times, review them, say that something is missing etc. It’s a lot of extra work to get a benefit that I pay for out of every paycheck! Plus (and maybe this is because Im in sales) I am THEIR customer so they should be able to provide better service because if i jerked my clients around like that, I’d lose them all. End of rant! What sort of resources are you looking for?