You’re having a bad hands day, you wore pants with a difficult button, and you REALLY HAVE TO PEE.
You’re having a bad hands day, you wore pants with a difficult button, and you REALLY HAVE TO PEE.
Kate Moss famously said ‘nothing tastes as good as skinny feels.’
Kate doesn’t have RA. She has also never had fried pickles.
If she did, she would’ve said ‘nothing tastes as good as sleeping feels.’
I realized recently that I’ve had a good, strong nightcap every night for over a year. It was a stress thing, one of the few ways I could relax in my old environment.
I also figured out that certain types of alcohol increase my joint pain, namely beers and the higher tannin wines.
An unfortunate finding for the cabernat lover in me!
It would explain the fatigue: getting half lit on something that increases joint pain and stumbling into bed probably doesn’t yield the most restful sleep.
I know it sounds stupid; I knew it wasn’t good for me but trust me when I say my old employer was toxic in many ways.
I decided to experiment and dry out for a month. Joint pain reduced and I’m sleeping like a baby!
Wow. That simple to feel that much better.
It’s motivating me to make some even bigger changes.
But first…a good eight hour date in my bed with my comfy sweats and a cuddly critter!
New town, new job, new doctors, new condo…heck, even a new car!
To say I have a lot to wrap my head around right now is a bit of an understatement.
I moved with the best of intentions. I was going to jump in, immediately saturate the marketplace with my awesome sales prowess, sell double my goal, and be the first newbie to ever be invited to the awards trip next year. One week. All inclusive for myself and a guest. Somewhere tropical.
Y’all, I can really see myself there.
I was going to hire a trainer and take control of reshaping my body back to health. And back to a size 6. So I’d look HOT on that beach.
I was going to immediately unpack, pictures on the wall, and keep the entire place immaculate.
I mean, how pretty are those stairs? All 12 of them. (Hold on to that fact, it becomes more important in a moment.)
In short, I was going to either table or dominate everything RA related and get my sh*t together.
I’ve been here a month now. Saleswise, I’m doing well but it is abundantly clear that the only tropical vacay I’ll have this year will be courtesy of the Travel Channel.
I’ve worked out with the trainer twice. I’ve also cancelled twice- once because I just didn’t feel like it and once because I wanted to watch Revenge on my dvr. And then last weekend, I pushed too hard and will find out tomorrow if my ankle is indeed fractured.
A non RA injury. Woot! But 12 stairs to my bed. Un-woot!
Oh yeah. And that whole unpack and keep crap clean? (Cue hysterical laughter.)
But it’s all good. For the first time in a long time, I’ve let myself dream and have goals. Sure, those goals were not necessarily attainable but man, are they fun to think about and to be able to try around people who don’t know you as someone who sometimes struggles.
It’s certainly a jumping (or sliding on my butt down stairs) off point. And it’s been a very long time since I’ve felt the freedom to even try to change.
Being anonymous can be so empowering.
Also empowering? Who attended WAAD last week? For those of you unfamiliar, this was a virtual conference hosted by IAAM to spearhead awareness of autoimmune arthritis. While I find comfort in dreaming big in my anonymity, I’m so thankful for this awareness that will hopefully make it so that patients like me don’t have to feel anonymous to dream big.
I was in a discussion with q friend recently where she stated that she believed her cheerleading background to be more.athletic than my 12 years of classical ballet training with a nationally known instructor.
I fought that argument with 2 words: pointe shoes.
I was obsessed with dancing en pointe from an early age. It was so beautiful.
When they finally told me I was ready, I was so excited that I made my mom take me shopping that day.
At my first real class en pointe, I beamed with pride because of all us beginners, she called me out for having the best feet.
Of course I did. I practiced the whole summer before on my own.
For those of you unfamiliar with what I’m talking about, pointe shoes are ballet slippers with wooden toes that allow you to truly dance on the tips of your toes. You’re not supposed to (or allowed to, at least by my old teacher) do this until you’re around 12 years old, your feet have finished growing, and you’ve demonstrated that they’re strong enough to handle it through proper technique.
In other words, it was kind of a big deal.
It was also incredibly hard work. To even wear the shoes, I had to wrap my toes in gauze, pull tights over it, and put plastic padding in them. I got crap from other girls who didn’t use the plastic. But I also saw them lose toenails and that was something I never had to deal with.
My most favorite moment was dancing in the dream ballet of a performance of Oklahoma. Picture a flowing white dress, dry ice, and beautiful music.
Pique turn, pique turn, pique, pique, pique turn, arabesque.
It was hard, yes, but it was just so beautiful.
I was so happy.
Last year, I saw a production of Oklahoma with the original Agnes de Milled choreography.
God, it was beautiful.
And then I remembered my feet.
I have a lot of work to do, yes.
But since being diagnosed with RA, I’ve ran many 5K’s. I’ve hiked. I’ve done a ropes course. I’ve conquered fears and anxieties and walked myself out of toxic relationships, bad jobs, and into new situations and cities that are pretty scary to me.
But even in failure, my feet have been unfailing.
I’ve always gotten myself to better, more beautiful places.
So yeah, RA and all… I’m pretty damn proud of these feet.
I bet that got your attention. If it makes you feel better, I’ve now got that commercial playing through my head continuously. Lovely.
BUT. I say this because- WHO’S EXCITED FOR THE FIRST EVER WORLD AUTOIMMUNE ARTHRITIS DAY coming up on May 20th?
I think it’s safe to say that I am!
For those of you still unfamiliar,
don’t let my lame attempts at humor dissuade allow me to provide you some detail:
Established and hosted by IAAM, this awareness event/virtual conference will be held annually on May 20th, online and during all time zones, making it a 47-hour online event.
It will feature:
-Live and on-demand presentations led by patient experts around subjects we all face to include:
“Who Am I Now? Living With Unexpected Disability”
“Working Around Your Disability-From Cooking to Daily Tasks”
“Parenting a JA’er”
“Building Your Self Image”
-Scheduled live chat sessions and surveys
-Live call to action posts interactive for attendees that will immediately increase visibility and awareness
-Access to an online library of downloadable resources that can help you and supporters in managing your diseases.
This truly is an international day, with WAAD already being registered on 16 health calendars internationally and receiving nonprofit support from organizations to include the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation, and Lupus UK.
So…I’m sure you’re thinking that there’s a catch, right? Nope! You can register here for free!
So WAAD’s uppppp?!? Go ahead and register! I’ll “see” you there!
Mint julips, Lilly Pulitzer, Junior League…OH MY!
Having recently moved back to the area that I grew up in, smaller to mid sized Southern America, I’ve been laughing at some of the local things I’d forgotten as well as other things that I wholeheartedly embraced during the 10 years I spent in South Carolina.
Yes, I have experience in all three things mentioned above. Getting all decked out in a fantastic hat to go to Carolina Cup…and going for 5 years in a row without seeing a single horse. Thank you, mint julips and Jack Daniels and several hot frat boys.
I also have the experience of surviving a very conservative Southern Baptist college where you were either God squad or frat princess. No middle ground. Shakes dust off of my sparkly tiara…because the party people didn’t judge if you went to church the next morning but the church people certainly let you know you were judged for going to the party.
I think back about all of these things and I see how important appearance is. Being physically attractive…being slim, being super blond, being super tan, having modest yet revealing clothing with the right accessories…is something I feel like I have to be…and struggle with. I have no idea what color my hair really is…I will admit to weighing myself every morning and night and freaking out about the numbers…and believe you me, I am REALLY freaking out right now…
But it’s also just as important to maintain a specific social appearance. I am polished, confident, friendly, chatty, guarded, and well connected with impeccable manners and never negative…or at least I’m supposed to be and probably am if you meet me in passing. Afterall, Southern women must always keep sweet.
So where does having RA, or any other chronic illness, fall into this? How do you deal with this if it has been ingrained in you that you can’t show pain or sorrow or negativity? From experience, I can tell you that it is an enormous conflict. Not only are you dealing with ‘how do I present this on a way that is realistic yet not scary’ but you also have ‘how can I be honest with myself and others about this without being completely rejected by the culture in which I live?’
How can they handle this? What will happen to me because of this?
What the hell am I going to do?
Stay tuned…I am finally ready to write about what my diagnosis did to my relationships…also known as what NOT to do.
I’ve gotten some weird search terms over my blogging career but every once in awhile, you have one that affects you. I often see ‘when does RA stop hurting?’ Makes me want to cry because the answer for each person is so different.
For the person who found my blog via the following search term: I miss my cat and need something to cheer me up.
Molly loves you.
Whew! It is done. Where to start…
7 weeks ago, I started a new job that I was excited about with a company that I loved. 2 weeks ago, they relocated me, capping off a 5 week period where I was commuting between Charlotte, NC and Columbia, SC every week and basically living in a hotel. In the midst of this, I had to make several trips to Greensboro to find a new place to live, arrange for movers, and everything else involved with that. Oh…and I bought a new car. Because while I loved that the cherry bomb (my nickname for my old car) was completely paid off, it was just that…a bomb…that definitely wouldn’t have made it the 4500 miles I’ve already put on the new one.
I was really worried the weekend I finally moved. I had been flaring badly for several days…I couldn’t figure out why! I even asked my mom to bum me a couple Prednisones she had laying around. If you know my thoughts on Pred, you know how bad I must’ve been feeling.
The day of the move, I woke up to stiff and sore everything. Flaring in places that usually don’t bother me was especially disconcerting.
I was generally
a hellacious bitch in a bad mood the whole day. The movers made fun of my self.constructed tv cabinet and the cat showed how much she despised the car by crying every minute we were in the car. Seriously. I timed it- the longest she went without an unhappy meow was 2 minutes! My brother may have picked up a broom and asked me why I brought my ride inside. That will have repercussions at Christmas this year…
Oh yeah, and in the midst of this, I got my damn period. Lovely…probably TMI…but it really did add an extra something special to the whole day. Promise!
At the end of the day, I went to take a hot Epson salt bath. The water wasn’t warm enough to melt all the salts and let me give you a piece of advice: undisolved Epson salts meets unclothed delicate areas equals BURN.
All in all, it was a sucky day where I felt terrible and
took it out on everyone around me wasn’t terribly pleasant to be around.
I woke up the next morning…and strangely…I felt great! The flare was gone and I hadn’t even taken the Prednisone.
I went downstairs, made some coffee, and sat on the couch for a few minutes. I realized that it was the first time in probably a year where I could just sit in silence and enjoy something.
I knew that the stress of my old job was very unhealthy and I knew that the transition would also be rough but I had no idea just how much it was affecting me physically.
I’m still feeling good, still exhausted, but am finally glad to be in a place and with a company who doesn’t run me ragged.
I’m super excited to finally feel mental clarity again after spending the last year in a constant state of panic. I only have one cell phone now- it doesn’t go everywhere with me nor does it sleep next to me. I actually have time for myself!
What I’m most excited to see is if this is how much better I feel in two weeks, how am I going to feel in six months? I’m so thankful to have time to get myself together again.
Ahhhhhhh, yes. The inevitable what happened first, the chicken or the egg saga.
Sometimes it is so hard to tell.
Flares are stressful. Crashes are stressful. Stress is…stressful. Even good stress is stressful!
But you can say the same about the others too. Flares make me crash. Stress makes me crash. Crashing makes me crash.
So which is it?
I almost did a post on Sunday but was afraid you would think it was a cruel April Fools joke that I’d actually written something!
Whew! The past month has been taxing. I’ve been training and living in an extended stay for 5 weeks now and I seriously have a love/hate relationship with hotel living.
Love: I have a jacuzzi tub and yes, I use it every. single. night. The RA loves it too! I sleep well here…I think it’s because if I crank the loud AC up and turn on the ceiling fan, it sounds like heavy rain.
Hates: Columbia,SC is hotter than hell and the humidity makes my hair look awful. 5 weeks, 5 different rooms. I’ve gone to the wrong room twice now, once on the completely wrong floor! Plus my RA hates driving and I’m doing a ton of that. What I hate the most: I miss my catbaby.
But next week is the last one and then I’m for real at my new home in Greensboro, reunited with my sweet furball.
I’ve had a lot of time to think about things these nights by myself and I’ve come to a few conclusions: I’m SO buying a king sized bed, I miss writing regularly, and I miss reading other blogs. I’ve been so busy for the past year that I’ve barely had time to do any of the things I enjoy doing. So I think to help me refocus once I’m settled, I’m going to write about getting these things back.
What else is new in my world? Allergies! Which make me flare! And
me awful acid reflux! I’m popping Zantac like tequila shots and I think the acid reflux feels surprisingly like mtx stomach.
But things are good and exciting.things are happening. I promise to not leave you hanging too much longer.