How to: survive being in a wedding with RA

Standard

As mentioned earlier, 3 weeks ago, my brother got married to a wonderful girl!  I was a bridesmaid, and thrilled/honored to be included in the wedding party…but living with RA brought some concerns that I’d gather the average bridesmaid doesn’t encounter!

A three hour drive to the city, and a three hour drive home on a sleep deficit.

A jam packed schedule with literally no down time starting at 9am Friday morning and going straight through Sunday.

All that standing.

All that dancing…because you don’t want to be remembered as the old stick in the mud.

So what happened?

I initially planned to drive up Friday early morning but once I saw our schedule started at 9am, I left Thursday at lunchtime.

I broke up the trip by stopping at the town I used to live in (a good halfway point) and managed to squeeze in a visit with my rheumy because I haven’t found one here I like.  And because I like the practice I’m at and may stay! And by visit, I mean poking, prodding, and blood work.  

I’m happy to report that I am being taken off methotrexate!!! That definitely pumped me up for the remaining hour or so. My left wrist was still a little ‘squishy’ but we are watching it and will re-evaluate in a few months.

I arrived in Raleigh around 4pm, just in time to go hang with my brother and then meet my parents for dinner.  The best part of the day? In bed by 9pm and slept straight through to 7.

That night was amazing and was the type of sleep I needed to get through the next two days.

Friday at 9am: mani/pedi time with the ladies! I’m in the red shirt.

  
12pm: Bridesmaids brunch

3pm: wedding rehearsal IN THE POURING RAIN.  It was an outdoor venue and I was terrified of slipping so I literally wore a pretty dress and tennis shoes that I always keep in the car.  Unfortunately, when RA is involved, function beats fashion.

4:30- Head to rehearsal dinner site to help finish set-up.

6pm: rehearsal dinner.  I wound up sitting with my cousins and the preacher…so I tried to be on my best behavior.  I tried sooooooo hard.

  

But nothing is more fun than taking awkward photos with your brother’s friends to piss him off!

  
And some cute ones with me and my cousins. Pink dress= me.  Blue shirt = my bro.

I’d like to tell you that I went back to the hotel and got in bed at 9.  I did not.  To which I will be completely honest and give some good advice: be ye not so stupid.

I arrived at the venue at 9am the next morning for breakfast, hair and makeup. Because of the lack of good sleep, this is how I spent most of the morning…

  
More honesty: that is not a mimosa.  I was tired and achy.  But do you see the yellow Tom’s on the feet in front of me? God bless my new sister in law. 

I think this is a great ‘I feel lousy but I don’t look sick selfie’ because again, I felt terrible.  Moral: sleep, it’s important!

  
The wedding was beautiful.  I was concerned about tripping walking in and out, but I hear that’s normal.  And my feet took a beating because once we got dressed, we stood until the after wedding pictures were done.  We got dressed around 3pm and the wedding wasn’t until 6.

Pictures were fun but exhausting.  And oops…we dropped the groom!

 
I was shaky when the reception finally started.  Too little sleep, too little food, too much standing.  

I fixed a good plate of food and sat for awhile.  And ended the night dancing with my adorable grandma who I learned is actually a wild thing!

  

YourCareMoments

Standard

If you’ve been reading here awhile, you know I do not post/endorse anything lightly, as I feel that getting into a ton of that makes blogging not fun to read. BUT, I am all about some good old cool resource sharing.

Several months ago, I stumbled on YourCareMoments. I wish I could tell you where I found it, probably another blog, but the premise of answering some questions about the RA experience and making a little bit of fun money for doing so sounded ok by me. And we all know how important contributing to patient research is!!!

I’ve been doing them for several months, and they send surveys around a variety of RA issues. I’ve noticed a lot of surveys revolving around the doctor patient relationship, medication compliance, cost of medication…all issues that I struggle with. I tend to get 1-2 surveys a month and generally make $5-7 to respond.

Keith with YourCareMoments approached me to see if I’d like to share this with other patients and of course, I said YEAH!

Description from Keith:

YourCareMoments is an online survey community where patients can share your voice and get paid for doing so.

They provide insights into consumer habits, decisions, and healthcare experiences through short, online, anonymous surveys that they send to their registered patients. The surveys take 5-10 minutes to complete on computers or mobile devices, and YourCareMoments pays PER survey. Payments are sent via Paypal and take 2-3 business days to process after each completed survey.

In order to survey patients when the information is still fresh in their minds, the company keeps in contact and follows the participants whenever they see a doctor or pick up a prescription. Patients don’t need to worry that YourCareMoments might share their identities; the company never asks for names or addresses, and your email address is never shared.

You can register free by clicking here.

If you have any questions, don’t hesitate to email Keith at contact@yourcaremoments.com.

*Disclosure: I have received compensation for taking the surveys sent to me. I have received no compensation for writing this post and will receive no compensation for any readers who sign up.*

Thank you, Healthline!

Standard

  
Super excited to have been included on Healthline’s list of 2015 Best RA Blogs!  I especially love that they say I’m 32…add 3.5 years to that and you have the right age. :) Healthline…don’t take this as a request to correct my age.  I’m GOOD with people thinking I’m 32. 

It’s always flattering and humbling to be included with people I look up to who are simply sharing their lives with RA! Check out all the bloggers recognized here!

Catching up…again…and Happy Arthritis Care Week to my UK folks!

Standard

Memorial Day Weekend- the weekend in which a lot of folks I wouldn’t trust sober get loaded and play with fire. Also known as the weekend in which my intentions are to clean up my email and get several posts out for your reading pleasure.

I know I’ve missed blogging about a ton of cool events, including the hugely successful WAAD that IFAA just wrapped up. More to come on that later…

So where have I been?

Well…this happened recently…maids

And before we go starting rumors, I AM NOT THE BRIDE. I am the bridesmaid on the far right. The bride is my amazing new sister in law.

dandl

Photo Credits to Amy Allan

It was gorgeous and fun and just amazing…but my spring has been full of parties, showers, a long bachelorette weekend in NYC, and I am exhausted. So I’m back now, much more rested, and ready to pick up my long neglected blog.

As I said earlier, I do have an email backlog of stuff I want to share with you. So let’s start with a goody for our UK friends…HAPPY ARTHRITIS CARE WEEK!

Enjoy a really interesting video campaign I was sent recently: https://www.youtube.com/watch?v=6-iVnP_YyAQ

Aw naw!

Standard

A better title than aw sh*t! 

Y’all, I’m trying so hard to be more consistent blogging…and clearly posting in February and then realizing in April that I’m behind…no good!

Which leads me to a discussion on what I’m struggling with right now.

Time management.

I think it’s safe to say that when we’re feeling good, we try to fit EVERYTHING we can into each day. 

I work daily from 8:30 to 5:15. Once a month, I’m required by my employer to attend a networking event.  So, once a month, I have to work until 7pm.

The  joint pain and inflammation has been very stable. <KNOCK ON A REDWOOD FOREST.>

BUT, since moving, I haven’t been able to find a doctor here in Charlotte that I like.  I love the doctor I had when I lived in Greensboro…but the distance isn’t feasible.  Which sucks- my original intention was to stay and travel for appointments.  My old Rheumy has since moved.  So I’m kinda back to square one, hoping to work it out soon as I’m a few weeks away from needing refills.

Any tips on how to handle the transition?

Shock and Awe! 120 minutes of cardio!

Standard

So I’ve been doing a lot of thinking…about getting back on track. Eating well. Exercising. Making good decisions in support of wellness. But also wrestling with how to do all of these things and still have a social life.

I don’t want to be married to a gym or a diet plan.

As I was laying in bed on Friday night…berating myself for going out with friends for dinner and wine instead of going to the gym…I realized that even though I was ‘feeding’ my need for people time, everything else I was doing is just not working for me.

I realized that I miss the sense of accomplishment that comes from working hard and getting hot and sweaty. I miss the camaraderie of my gym support system. While Greensboro wasn’t the place for me in many aspects, I enjoyed working hard at the gym because I always had people cheering me on. Well…I always had one person at least. My trainer. And he was paid to cheer me on…but…technicalities!

I woke up yesterday morning and decided I was going to go to a 45 min Zumba class. I got dressed, choked down some coffee, and was so freaking proud of myself for just showing up.

Showing up at the gym is one of the hardest parts for me right now!

While waiting for the class to start, I noticed that there were a ton of people waiting with me. In costume. With balloons. And signs?

The sign read ‘Welcome to Valentine’s Day cardio dance!’

Oh, now that’s just adorable. I thought the sentiment was sweet. Until we got in there and they announced that the class was not 45 min today. It was 120 minutes.

(Shit.)

They had 6 different instructors who were going to teach 20 minutes each.

I almost left. Then I decided I would stick out 45 minutes. Then I started talking to the people around me who convinced me to go for the full 120.

And so it began.

I was thankful for a snack table- I quickly are 2 Cliff bars since I had no breakfast.

The first hour wasn’t bad. They toned down the intensity so we could make it. I got a nice little break during the hip hop segment- yes, I tried but even on my best attempt, I can’t dance like that. I’m really hoping that there are no pictures or video from that 20 minute segment. Let’s just say that everyone else was booty shaking and looking great and the most accurate phrase to describe my actions would be ‘limbs and butt flailing in every direction with no purpose, control, or finesse.’

I’m forever grateful to the women I stood near as we all needed each other for the last 30 minutes. I got really concerned for a moment when my left knee started to feel weird. And then I remembered…oh right, I’ve been dancing for a straight hour and a half and my usual activity level is ‘inert.’

It kinda makes sense that something would hurt…and I’m surprised that was the only thing!

We started cheering for each other. And by cheering, I mean I kept yelling ‘we’re not going to die today!’ I think I was yelling that more for myself, and I don’t think I necessarily believed it at that point in time.

But finished I did, and die I did not!

IMG_1928

Afterward, I walked out to my car . A bit shell shocked. I just did 2 hours of cardio. How did that happen?

I felt exhausted. Sweaty. Happy. Proud of myself.

I needed that.

I took a nap, and then met up with a friend for dinner and went to a small party with friends later in the evening.

Best Valentines gift? Seeing that there is a way to balance these things that I truly need right now, I just need to step back out of my comfort zone.

Off track

Standard

Do you ever feel like you’re completely off track? Disorganized, scattered, flighty, and just plain not with it?

Yeah. That’s me right now.

The (only) good part of living in a city I loathed is that I was on top of things. I worked out like an Olympian. I cooked like Emeril. I managed my financial life like a CPA.

Because there was absolutely nothing else to do. And I was SO. SO. SO. BORED. And miserable.

Fast forward six months, I’m happy again. But I’m so happy that I’m all over the place.

Just call me Tinkerbelle. With ADHD.

I’ve been soaking up city life so much: meeting friends every night, enjoying all the restaurants I’ve missed, and sometimes even just driving around taking in the beautiful city streets I’ve missed.

But it distracts me.

I’m not doing badly. I just feel like I’ve lost sight of some of the things I realized must be health priorities during my period in social purgatory. I feel like I’ve lost sight of other things I enjoy- blogging as an example- during my frantic OMG OMG PEOPLE! And things to do! And places to see!

So now… I need to find a balance. A routine.

And that, my friends, is easier said than done.

I am very selfish right now about my time. For the past two years, I spent time either by myself or with people that I just didn’t click with. So while I know that it’s supremely important for my health to eat right, work out, and get good sleep…I’m in a rut where I’m just not willing to miss a single dinner, happy hour, trivia night, you name it.

I’m not sure how to get out of it.

I realize that this may sound depressed. I am not. I’m actually very happy, just a little concerned as I’m trying to fit every piece of this in. I know exercising and eating in a specific way is critical to my health. And I’m just not sure how to balance it all right now.