Category Archives: Uncategorized

Chronic Pain Disorders:Best Arthritis Blogs for 2016


  I’m super stoked to be included on the list of Best Arthritis Blogs for 2016.  I’m even more stoked to be mentioned among many bloggers I’ve come to know as friends!  
How crazy is it to include bloggers among your friends? I will say that with those I’ve met in person, it’s a hilarious dance of I know you and you’ve read about many of my most personal feelings and experiences but we’ve never met and now here you are in person.  In other words, it’s awesome after you get over the initial weirdness.🙂 Same thing can be said about meeting people who read your blog.  I’m really more fun on my blog. 😉

Read more and find some awesome blogs that if you’re not reading, you should be at:

Many many thanks to!

Trying to listen when my body says ‘hey, hey you!’


  NC is covered in snow right now which means that we had like 1.5 inches and completely shut down after we bought all the booze and junk food…I mean bread and milk…in the city and hunkered down for the snowpacolypse.  

I know.  I’m from here and I even know that’s bad.

I haven’t left my condo since Thursday evening.

I woke up this morning to sore wrists and just a tight body all over.  I tense when I flare, I think in large part due to the anxiety I have around flaring.  I also flare everytime the weather changes, and Mother Nature’s presence in NC lately has been bipolar at best.

I woke up, assessed how I felt and did the following: took a hot shower, did some stretching (yoga, foam roller and tennis ball for target points), and had breakfast.  I saw my car was completely iced over and went out to scrape it off so that I could drive if I needed to and to mitigate the situation in case we had additional snow.

Unfortunately, due to my flaring wrists and due to the fact that I lent out all my gloves for the Panthers game last week, I had to do with no gloves.  Which means I made 3 seperate attempts at scraping.  I’d do it until I was either too sore or too cold and go in for awhile.

God, I miss having a garage.  I feel like we should create some sort of legislation that allots for all RA patients to have a garage. I mean, politics are so stupid right now, it may actually get passed. (Yes, I went there…and won’t again…and still think I haven’t revealed my political beliefs on my blog.  My beliefs aren’t relevant here, but these days they sway toward who scares me the least. I don’t have a firm answer on that yet.)

Then I went inside and took an extra dose of Aleve, put my heated gloves on my hands,and reminisced on what it was like to not have to think about these things.

Growing up, pre spooniehood, I danced extensively.  In that phase of my life,injuries were almost revered.’She worked so hard,hurt herself, and still kept going!’  Having that said about you felt like a Medal of Honor, you were seen as legit in that world.

I remember warming up for a performance.  I had been trying for months to (on the ground) sit in a center split and put my stomach on the ground. I was so close.  So close, that as we were warming up, my coach came and helped me push down further.  

Unfortunately, when she did, she got momentum to push by digging her elbows into my inner thighs, extending my legs further back than they could go.  

I wound up having a severely pulled right leg muscle (hamstring) and was in pain/tears before I went on.  I took 4 Advil and did the performance.  I did every bit of it but during the last few minutes, I creepy smiled and cried at the same time because I was in agony.

If I figure out how to convert the VHS of that performance to upload here,  I will share. You can see that I’m smiling with tears running down my face. Awful!

It took me 3 months to get back to normal.  But it didn’t stop me from dance camp or other performances. I took no time to rest and recover.

Y’all.  That’s stupid.  Beyond stupid.  Dangerous.  The injury was bad enough that I still feel it 20 years later when I do lunges.

My point- because I do have one- living with RA teaches you true body awareness.  You don’t understand when you’re healthy what the ramifications are of not being aware and caring for your body.  Long and short term.  I seriously thought at the time ‘I took Aleve, I’ll be fine, I can’t let my group down. I can make it.’

My current self says to that: the group will live and adjust.  You do not have to make it if the only way you can is by smile/crying and Advil that really doesn’t do much for you.

I hate that only when I got this disease could I see the immediate and long term effects of not being aware of what my body needed.  I also hate that sometimes I feel like my own doctor/physical therapist/pharmacist to maintain. I know today what I needed to feel better and stay safe. I listened to my body and I responded appropriately.

 I wish my pre Spoonie self had taken better care of the body I still inhabit.  Didn’t take chances, gave it time to rest and recover.  It probably wouldn’t have made a difference in developing RA or not but at least I would’ve learned those skills in advance.

The first 2 years after diagnosis, I still had that push through mentality.  In those cases, it was almost an eff that to RA.  I’m not saying that the attitude isn’t important; my big thing for myself is to continue activities post diagnosis that I enjoyed pre.  But with any type of modification necessary to make it safe.

I’m thankful to RA for teaching me true body awareness; that it’s not an ‘I can make it’ mentality but an ‘I need this’ mentality.

In keeping with my self imposed theme of self-love this year, I’m trying to really listen to when my body tells me it needs something.  Ok, you need a break from scraping the car.  And another.  And another.  And now Aleve and rest.

That’s ok. Listening to what my body tells me will keep me healthy. 

2016 1 week check in


So…how am I doing with the addition of self love vs the subtraction of undesirable behaviors???

I am a work in progress.

The laundry from last week is folded…and sitting in my living room. The cat judges. But it’s a step in the right direction?

I’ve made it home every day this week for lunch.  I’ve also eaten breakfast everyday this week which means I don’t want to gnaw my arm everyday around roughly 10am.  Breakfast has been eggs with salsa and wilted spinach; lunch has been baked chicken with spinach and artichokes.

Stumbling blocks: freaking football!  I’m a huge Carolina Panthers fan and if we didn’t have that stupid loss to the Falcons 2 weeks ago(admittedly, we played horribly that game), we would’ve had a PERFECT season.  Like 16-0. But whatever.  If you’d told me even a year ago we’d be 15-1 with a first round bye and hometeam advantage in the playoffs, I would’ve laughed in your face. I realize I just almost lost a lot of non football readers.  Keep reading- it’s almost over, I promise!

Also, I’m quite superstitious. We were down in the first quarter last Sunday which told me that they needed me to be wearing my special shirt and drinking a glass of wine in my usual haunt so yeah…chicken wings and wine happened. 

I’m glad we have a bye week this week. 

My intention, in making the best decisions for me based on loving myself and deciding things in accordance with that, was to have a clean eating, no wine January.  But I realized in being fair to myself, the two items are not fair to me with regards to celebrating fun events with my friends.  So I am allowed, in moderation, on days with games.

That’s fair and realistic.

In other matters, I’ve had to make a very hard decision regarding rheumatologists.  I LOVE the one I see currently, but he’s an hour and a half away.  While I love him and the practice, it’s getting harder and harder to make the drive there.

Want to experience hell? Drive an hour and a half first thing in the morning on an empty stomach for fasting blood work.  As much I trust my care with them, it’s getting harder and harder to make appointments.  So there is going to be a change soon, as much as it kills me.

It’s easier for me and my fear has always been, what happens if I need an ASAP appointment because I’m not doing well? Driving that far sick won’t happen.  I’m so sad to make that change but I have good recommendations for a new practice so fingers crossed that works out.

Happy 2016, lets talk about love!


Full disclosure: I tend to make vast pronouncements every January 1st with the best of intentions of eradicating some stupid behavior from my life. Let’s lose weight! Let’s be more fiscally responsible! Let’s eat better! Blah blah blah.

You probably know how it goes…I’m usually successful for a few weeks, sometimes more, sometimes less…and these vast pronouncements are then promptly forgotten.

I read an interesting blog post recently that I’ve had on my brain ever since.  It made me think about a lot of things.  And I think hit why I’ve been unsuccessful in making change because of it.  Because I wasn’t hitting the core of these behaviors I’ve identified as undesirable.

Article is here.

Instead of making sweeping resolutions for things I want to change, my goal for 2016 is to focus on loving myself.  And making decisions on a daily basis that may be hard decisions to make, but fall in line with self love.

One of the things that kept bugging me after I read this was ‘do I love myself?’  My immediate answer was ‘yes! Of course!’ So my next question was ‘why?’  

What struck me in my answer to myself was that most of my answers to that were based on my perceptions of what other people think of me.  Because my friends think I’m fun/ny! Because my coworkers think I’m successful. I’m not going to share all or what I thought here…yet…because it’s pretty personal and I’m still processing it.  

I think this is an especially pertinent question when you live with chronic illness. 

Before you think that I don’t love myself, know that I’m actually pretty damn sure that I do.  But my goal for this year is to define the answer to why on my own terms.  To understand my value, and to make decisions, even difficult ones, with that in mind.

Perhaps I’m being Pollyanna here, but I think if I put some real thought and effort into it, I’ll have an easier time with behaviors that I’d like to change.  For me, ‘you can’t do this’ doesn’t work…but I think ‘let’s think about this, but you love how you feel about yourself when you don’t do xyz’ very well may.

I look forward to updating you on this!

Happy New Year- may you all have healthy, happy years. 

Rambling stream of consciousness…


Brought to you by my current cold, the exhaustion that accompanies it, and a good strong dose of off brand Mucinex. *taken as directed, just to be clear*

I’m on day 4ish of the sinus and bronchial follies i.e. I’ve gotten over the whole trying to figure out who gave this to me and plotting terrible  passive aggressive things I can do to them.  I’m now in the ‘this isn’t so bad even though I feel pretty crummy’ phase.


Colds used to really freak me out when I was newer to the RA game.  I knew my meds suppressed my immune system and immediately imagined that I’d end up in the hospital.  I’d end up at the doctor on Day 2 saying do something! And I think the anxiety I had made it so much worse.

I honestly don’t know that changed.     There was no ah ha moment, but at some point, I realized that colds are comforting to me. 

They make sense.  I know why I’m tired.  I know why my head hurts.  I know why I can’t smell anything and why my ears are crackly.  And those symptoms respond favorably when I treat them. Bonus: I never have any joint pain when my body is busy attacking something other than itself.

Sure, I still treat it aggressively.  Hot steamy showers, neti pot, hot teas and soup…you name it, I do it.

But it’s so nice, just every once in awhile, to crawl into bed in comfy clothes at 8:30, slather on your vapor rub, and know that you’ll feel better in the morning.



Oh my long forsaken blog…I’m almost embarrassed to post as of late.  I’ve had a lot going on,both personally and professionally, all positive but I’ve lost sight of updating you on a regular basis.

Truth be told, I’ve lost sight of many things in my busyness.  My professional life is organized to the minute but my time outside of that is basically feral.  Insert pictures of wild animals.

I have lots to tell you…about life, about RA, about travels, about #Jointdecisions and the ACR meeting last month.  And I feel unworthy of reporting on any of those things because of my lack of consistency.

So here’s what I’m doing…I’m working to apply the same principles that make me successful at work to my blogging activities.  Give me a few days…still hammering out the details…but I still have a lot to say. I’m just tryon for the first time ever to put some structure around it. Please feel free to tell me what you want me to write about!

On a different note, the weirdest thing happened to me last night. I got home around 5:30, it was dark, but it was warm.  The pre RA in me said lets go running!!! The RA in me said no.  

I sat there for a few minutes and assessed my bodily answer to that.  And the answer was an overwhelming ‘try it!’  I double checked with my poor injured left ankle that has had 2 cortisone injections…and it was surprisingly onboard.

I thought and thought about it and remembered hearing another blog (holla Brit) saying not to focus on distance but to focus on one step after the other.

I ran for 15 minutes.  Sure, I was a sweaty, hacking mess but this morning, my bad ankle was fine.  And I was proud of myself.

It’s been awhile since I’ve been proud of what my body can do.

I hope to tell you more stories like that, along with all of the funny things I try that may or may not work.

Love and hugs!

Doctor/patient relationship questions


So, if you’ve been reading for awhile, you know that I’m involved with several organizations.

I’m working on something with #jointdecisions right now and would love your feedback regarding your doctor/patient relationship.  More details to come soon! But please give me some feedback on the below questions!
Whah has worked for you in building a relationship with your rheum, feeling confident that you made the right choice in switching and also how you sustain and grow that relationship with your rheum over time?