Kicking Off RA Blog Week

This week I’m participating in the first ever RA Blog Week! I’ll be writing a new post every day starting today through September 27th and sharing them with nearly 40 other RA Bloggers on RADiabetes.com. Each day features a different blog prompt, or topic, which is an amazing way to curate a beautifully diverse collection of perspectives on our shared RA experience.

To kick off the week, today’s prompt is “A day (or an hour) in your life. A day (or an hour) in your life – Pick a day, an hour or half a day and tell us what happens? Are you stiff when you get up in the morning? Tell us about getting ready to go somewhere, or going to a restaurant. Pick any unit of time and tell us what your life consists of.”

When I thought about how I wanted to approach this, I was immediately overwhelmed. A few months ago I participated in a #ChronicLife Twitter storm: I tweeted every single time my disease affected me during one day using the hashtag #ChronicLife. By the end of that day, I was emotionally exhausted and it took me several more to recover. Acknowledging all the ways my RA impacts my life each day – big or small – provoked a powerful emotional reaction I wasn’t prepared for. The thought of going through a similar exercise on this blog instantly turned me off.

As played around with a few different ideas, I thought back to last Thursday when I was having some pretty serious hip pain that sent me straight to DEFCON 1. For an hour I internalized a full tilt meltdown while trying to distract myself with work and my extensive to-do list. A few hip-pain-free days later, and I can appreciate the (somewhat morbid) humor in my insanity – this is not the first time I’ve unraveled like this. In fact, there are stretches of time it’s an almost daily occurrence: an RA-inspired mania.

In my defense, 2009 – 2011 were rough. After having both hips operated on in a single surgery in July 2009, the bone graft in my right hip failed within six months. After delaying surgery for a year, I succumbed to hip surgery #6 in January 2011. In order to protect this bone graft, I spent more than 5 months 100% non-weight bearing to the point of almost being on bed rest. Both the physical pain and emotional toll were excruciating. Today when I feel even the slightest twinge of pain in my hip, I reach critical mass pretty quickly assuming that I need surgery again and that my health and my LIFE are on the verge of blowing up in a pretty major way.

An hour in the life of my hip pain meltdown  

11:42AM: I took my morning meds hours ago, why is my hip still hurting so much?

11:48AM: Because it’s bad. This is a bad pain. I can’t believe how much it hurt to roll over and lift my leg last night – just like after surgery.

11:53AM: I need to make an appointment with Dr. Smith. He’s going to be so upset.

11:56AM: I hate feeling like I’m disappointing him. We worked so hard to get to this point.

11:58AM: When would I even have surgery? I really don’t have time for this…

11:59AM: Well obviously not until after the holidays. I guess January would work.

12:04PM: I forgot about Mexico at the end of January. February it is.

12:05PM: Shit. We have to move March 1st. February is out.

12:06PM: I can’t believe we’re moving again. Now we’ll need to look for a first-floor place like Somerville. Or maybe somewhere with an elevator?

12:09PM: We’ll definitely need to find Penny a new dog walker too for while I’m recovering.

12:10PM: April? I mean, I’d need time to get settled in the new place…

12:13PM: But not until the end of April, because I’m NOT missing Marathon Monday for fucking surgery.

12:15PM: So May? Wow. Next summer will suck.

12:17PM: Methotrexate hell this summer and surgery next… Yeah. That seems fair.

12:20PM: Shit. I’ll have to go off of Orencia for surgery. I wonder if insurance will find a way to screw me over on that.

12:21PM: Is nothing ever easy? I mean, I just… Come on.

12:25PM: I don’t have nearly enough money in my savings account to take 3-5 months off from work. I know I have disability insurance, but still…

12:26PM: I’m always saying I need to cut back on my spending, I guess now is as good a time as any…

12:27PM: Shit. If I have surgery in May that means I won’t be able to do the Color Run or Battle Frog or even Spartan in August.

12:28PM: Maybe I could still do the Spartan Sprint at Fenway in November?

12:29PM: {Rational brain chimes in} Maybe if you weren’t an asshole running around doing Spartan races and jumping over fire, you wouldn’t have hurt your hip. Did you ever think of that?

12:31PM: {Emotional brain continues to ignore rational brain} Maybe I could do a Spartan race on crutches like that girl, Amanda/”Crutching Tiger” on Instagram? I mean, if she can do it, what’s my excuse?

12:33PM: {Rational brain} You really are an idiot. You’re beyond hope.

12:35PM: I guess I’ll save money on race registration fees. So that’s a plus.

12:36PM: If I was home on leave that would give me a lot of time to work on my blog….

12:39PM: Yeah… That will be fun for like a week before you’re off the reservation completely…

12:42PM: I can’t believe this is happening again… I can’t believe this is happening again… I can’t believe this is happening again… I can’t believe this is happening again… I can’t believe this is happening again…


I chose to approach today’s prompt with (dark) humor, but the truth is for a long time I lived in almost constant fear that my hip replacements could and would fail at any time. So while these meltdowns have become fewer and farther between, the trauma and the fear associated with my hip surgeries remain very real and very present in my life. Managing this kind of fear and anxiety is an often overlooked part of living with RA and other chronic illnesses. These emotions, sometimes even more than our physical symptoms, leave many of us feeling lost and alone and misunderstood by our healthy friends and family. Luckily for me, I have a support system that is only too happy to indulge me in DEFCON1 meltdowns without belittling or demeaning my experience. And when all else fails, there’s always my #ChronicLife Twitter family. 

3 thoughts on “Kicking Off RA Blog Week

  1. rickphilips says:

    Ana I am not for certain I saw your blog listed on the completed lit for the day. if you have not had a chance to post the link please go to:

    http://bit.ly/1LVYbyl

    enter your name the name of the blog and on the second line the address of the blog and this will link the community to your blog,,

    my eyes are pretty blurry so if I missed it i apologize.

    I love your humor.

    rick

    1. Hi Rick,

      First of all, THANK YOU for organizing the first ever #RABlog week for our community! I can only imagine the amount of work required on your part, and think you’re a rock star in your own right!

      I was quite late to the party this evening, but I did get my post up only a short while before your message here. I’m all the way down at #25 on the list 🙂

      I hope you get some rest this evening!
      Anna

  2. Anna: I thnk I saw that after i sne my note. THe day has been long and i have much to do tomorrow. THak you for blogig with us.

    rick,,

    i love your work so will many others .

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