Author Archives: AllFlaredUp

Thank you, Healthline!

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Wow…thank you so much to Healthline for including me on this year’s list of The 20 Best Rheumatoid Arthritis Blogs of 2013.  It is weird for me to be included with a group of bloggers I look up to for information, strength and inspiration.

I started this blog years ago for myself.  I needed a way to express what I was feeling and everything that was happening to me, and I was desperately trying to find other patients that I could relate to.  I was newly diagnosed, very scared, and didn’t understand enough about this disease to know that I was the demographic.  Yep, I thought only grandmas got this disease.  I was embarrassed.

I had absolutely no idea that people would actually read this.  And comment!  And direct me to other blogs written by patients who I so completely identify with!  And allow me to develop both close online and in real life friendships with people who support me and who I try my best to be there for.  It was a shock and is still astonishing to me.

There are many important things that I have learned through this blog but the two takeaways I’d like to point out are:

-Healthline describes me as a Southern girl with spunk.  And they are correct.  I’ve always been that girl…except for when I was dealing with all of the emotions involved with wrapping my brain around a diagnosis.  Blogging and connecting with other patients helped me to regain my confidence in myself that I AM STILL and will ALWAYS be that girl…thank you.  Having two words permanently affixed to your medical record doesn’t change the core of your being.  In fact, I have learned that our struggles with humanity are what makes each of us human and interesting.  I *knew* that beforehand but didn’t truly feel it as a truth until I started connecting with others here…thank you.

-When I started blogging, I had a very hard time finding blogs that detailed what it’s like to live with RA as a twenty/thirty something.  The literature simply didn’t exist.  With each blogger on this list, with every blogger not on this list, and with each new blog started, we are ALL contributing to the body of work that shows it is possible to live a full life with this.  It is possible to be happy.  And every time we write about both our successes and our failures, we are helping each other and helping those just starting on this journey in desperate need of information…thank you.

So thank you Healthline but more importantly, thank YOU for reading.  You’re all aces in my book. :)

The Body Makeover Part Four

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So…I am way overdue on continuing my posts on getting back to the gym.  Where was I at…oh right, sticking to it and results.  Funny how I completely drop the ball right before I write about sticking to something, right? 

First, let’s talk about results.  Because let’s be honest, the results are a big part of sticking to it.

In my last post, I gave you my terrible, horrible, very fat stats. 

Starting BMI on March 24, 2013:  27 (SOB)

BMI in 2009: 21.2 (Skeletor…look at my About Me pic…I need a hamburger)

BMI Goal Range:  22.3-22.6

Current BMI on July 29, 2013: 24 

Let’s also look at some range of motion stats.

March 24, 2013:

Unable to balance on my left foot

Unable to jump

Unable to fully twist my wrists, restricted range of motion with flexion and extension

Unable to stand up from the ground without pulling up on something

July 24, 2013

Left foot can: balance for 10-20 seconds, complete a full zumba class, balance on a bosu ball, RUN (slow like a turtle)

Jumping: can do jumping jacks, can jump on both feet independently and together, can complete a full zumba class

Wrists: can lift 15 pounds with both wrists with overhanded and underhanded grips.  I estimate that I am at 95% of normal range of motion, still have some weakness on the outer sides of both wrists, no longer sleep with clenched fists, and have muscle tone surrounding wrists, thumbs, and hands.

Can stand from the ground with no assistance.

And finally, let’s look at some results from the doctor’s office.

March 24, 2013

Ultrasound of both wrists showed significant inflammation, with possible erosions on the outer sides of both wrists.

July 24, 2013

Ultrasound of both wrists shows NO INFLAMMATION although I still feel some tightness and occasionally see swelling on the outer sides.

Weight loss of 20+ pounds

As you can imagine, these results have been more than motivating.

So how does an RA patient who struggles with fatigue balance activities to produce these results?

With me, I have found that working out gives me much more energy.  Even when I don’t feel good.  When I don’t feel good, I push myself to do water aerobics or water zumba.  It’s cardio, yes, but it’s calming.  I have also found that my trainer is A-MAZ-ING at modifying our workouts to how I am feeling.  We usually start out our workout with a whole list of exercises to complete; if we come to one that bothers me or I am too tired, we simply move on to something else I can do.  As I have said before, a lot of my “hold backs” are mental.  If I have options that I feel in control of and can do at my own pace, it’s much less overwhelming.

Realistically, my workout week looks like this:

Monday- trainer session 6:30-7:30

Tuesday- Zumba 1 hr OR take a walk OR take the night off

Wednesday- 1 hr trainer session OR 1 hr water aerobics

Thursday- Zumba 1 hr

Friday- OFF

Saturday- spinning 1 hr OR yoga

Sunday- yoga class and guided meditation- 1 hr

Do I do all of these activities every week?  Oh heck no.  Some weeks, I’m lucky to get two days in.  And that’s ok!  We need to respect our bodies and do what we can.  I should note that I do have a standing “date” with yoga and meditation on Sundays.  It’s a restorative/deep stretch class which makes me feel awesome, and the guided meditation is my “church.”

Coming up next: trying new things- AJ tries hot yoga (again…more successfully) and stand up paddle boarding (twice)

 

The Body Makeover Part Three

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With the initial assessment complete, a workout plan in place, and cute new workout clothing purchased (of course!), it was time for me to get serious.

First things first, I needed to establish some personal goals and get my nutrition in order.

Again, while I won’t put actual weights online, here’s what I put down on paper.

BMI in 2009: 21.2 (admission: too thin, I looked like Skeletor)
BMI on March 24, 2013: 27
BMI goal: 22.3 – 22.6

Nutrition has always been a hard thing for me. I have tried every crash diet, detox, and even pills. They all have one thing in common: I feel miserable and am hateful to be around on them. At the advice of a coworker, I downloaded the mobile MyPlate app from Livestrong. It was $2 and basically works the same as Weight Watchers. I can eat whatever I want as long as it falls into the calorie range I am given based on my weight and activity level; I can earn extra calories by logging workouts.

I also started eating very clean. Loading up as many vegetables in every meal as possible, making sure I ate good carbs (quinoa is my new BFF), and lowfat complete proteins (black beans and rice, black bean burgers, lentil anything) alone made me feel great. Within a few days, I felt ‘even’ as in I didn’t spend most of my day on a sugar crash. Oh yeah, and I haven’t had a Coke since March. Unsweetened tea and flavored seltzer water is the new norm.

So…back to the physical activity!

The first class I attempted was spinning. I chose this class for several reasons. It was a seated class so if I needed to rest, it wouldn’t be obvious. Bonus: the class is conducted in a dark studio. I felt comfortable pushing myself in a situation where I was seated and relatively hidden for confidence purposes.

I was able to do the whole class although for a lot of it, I just sat and pedaled to the beat of my own drummer. A very very slow drummer. I was able to do some of the up and down; I was pleasantly surprised to find myself sitting these out not because of joint issues but because I was simply winded.

Then came my first real workout with C.

I can’t remember exactly what we did but I do remember very clearly that:

- Par for the course thus far, I refused to do anything with my wrists. I did try but would immediately hand the weights back to her. Same thing with pulling anything heavy. No go. We finally compromised and for exercises that required my wrists to do the bulk of activity, I would allow her to hand me three pound weights.

-Even with only one spinning class and a couple go’s on the elliptical, my ankle already felt stronger. I balanced on a bosu ball and killed some squats.

What really stands out from that first day is that she totally snuck one over on me. She told me that she wanted to assess my wrists by us throwing and catching a basketball. We did this 15 times: once facing each other, and then standing side to side so that I twisted and threw it back. It was actually FUN and I didn’t think twice about it because I was enjoying it.

When we finished, she let me know that my wrists had been throwing and catching a 10 lb medicine ball. Those same wrists that she had to beg me to even try a 3 lb free weight for.

Wow.

I started to open my eyes to the fact that my fear was holding me back more than my body.

That workout was intense. But it was manageable. It was hard rather than hurt. And the next day, it was *almost* delightful to wake up to aches and pains from actual physical exertion rather than aches and pains from a flare.

Up next: sticking to it and OH MY GOODNESS the results.

The Body Makeover Part Two

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The initial assessment: ugh!

To prep for my first real workout in 7 years, I ate a healthy lunch of movie theater popcorn and Coke. That’s right- I was a full ten minutes late because I went to a movie with friends before.

She forgave me for that and we immediately began the dreaded weighing and measuring. While I am not confidant enough to post that number online for all to see, I will tell you that my reaction to hearing my BMI was 27. Overweight starts at 25…I wanted to cry and immediately regretted stuffing my face with salt and sugar less than an hour beforehand.

Then began the real work: performing a variety of tests to see exactly what I was capable of doing.

- Balancing in both feet on a bosu ball and doing squats and then bicep curls and rows with free weights. I barely completed these as I was so concerned about my ankle. I kept stepping off because I was scared. I flat out refused to lift a free weight heavier than 3 pounds because I was scared of hurting my wrists.

-Lunges every way they can possibly be done, as fast as I can. I had a hard time balancing because of my left ankle. Legitimate hard time here, not a refusal to try because of fear.

-Catching, bouncing, and throwing a weighted medicine ball. LOL. That is all that can be said except for maybe an apology to the guy I almost hit. Note that this was a 5 lb medicine ball.

-How many sit-ups I ca do in a minute/how many push-ups can I do in a minute. I did a respectable 30 sit-ups. Proud of that stat. But y’all. I did a half ass ONE girl push-up and then used the rest of the minute to bitch about how I hate push-ups.

You get the drift.

When we finished, she made a couple of recommendations.

First, she recommended I try spinning classes as it wouldn’t stress my ankle or my wrists and if I got tired, I could just sit down.

Second, she recommended I try to do at least 15 minutes 3 times a week on the elliptical as it would take my ankle through all of the proper ranges of motion while offering support.

Third, she recommended the aquatics classes.

Then she brought over the calendar for spin and aquatics and made me commit to which classes I was going to show up for. I picked a couple and she mentioned that she could log in and see if I actually showed up. Accountability is a big motivator for me! She also said that it was ok if I didn’t finish the whole class; just to try and do what I felt I could do. Looking back, giving me this out really made me attempt a lot more than I thought I would.

And finally, she looked at me and said ‘I know you’re scared to get hurt and I know you’re very protective of your body BUT remember back to when you worked out before and know that there’s a big difference between something feeling hard and something feeling painful. I will never ask you to do anything painful but if something’s hard, I only ask that you give it a fair try.’

She was 200% correct. There’s a huge difference between hard and painful, and I had forgotten that.

Coming up next: the actual work begins, and relearning to love what’s hard

The Body Makeover Part 1

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I mentioned in my last post that I’ve been working out with a trainer and have seen some pretty significant results in a short period of time. As several people have requested to hear about this, this is the first of several posts.

Pre RA, I was incredibly active. I grew up dancing and then got into running, step classes, kick boxing and boot camp classes. When I started having problems, I was literally in the best shape of my life. I was working out with a trainer several times a week: she kicked my butt!

After my diagnosis, I tried to get my activity level up. I even ran three 5K’s with my trainer but it was really pushing it for me. I wasn’t stable on my meds so my symptoms made it hard for me to be consistent so I just stopped.

Stopping turned into fear of activity after an unrelated ankle sprain. Well, three ankle sprains actually. Same ankle. And then I started having some disease activity at the site of the injury, something that I have since learned is quite common.

I started Orencia a year and a half ago and have done well on it. I stopped feeling symptoms in many places, ankle included, but what I then felt was a very weak ankle that wouldn’t let me walk far, had balance issues, and couldn’t even jump.

I should also mention that both wrists were a mess. Same story: my March ultrasound finally showed no signs of inflammation and no permanent damage but I now had these wrists with no flexibility and no strength.

By feeling the Orencia working and hearing from the doctor that I had no inflammation, I decided it was time to get this body back together.

I wanted to have fun on vacation, and I realized how important it was to take this window of opportunity to make my body stronger.

My gym is one of those chain gyms. Truthfully, I joined it because it has a pool and a steam room as those are two things that make me feel better when I flare. So I was a little unsure of what to expect when I went to talk to them about personal training.

All of their trainers are certified and do continuing education on a quarterly basis. They asked me a lot of questions as to what I hoped to accomplish from training and what I wanted in a trainer. My answers? I want to work on ankle strength and stability, wrist strength and flexibility, and overall stamina. I also didn’t care if my trainer was male or female but it was a requirement to me that they at least know what rheumatoid arthritis is.

I paused when I said that, looked at the Director of Training and asked him to tell me what it is. He knew the differentiation between OA and RA and while he didn’t know many specifics, I was fine with that. That part I can educate him on.

A day later, I got a phone call from the trainer he assigned to me. Let’s call her C.

She was very friendly and ran through my goals on the phone. As we set up our first appointment, I started to mention my RA when she surprised me and brought it up first.

‘He mentioned to me that you have RA and it was important to you for me to understand what that is. In addition to my personal training certifications, I have a BS in Exercise Science and am getting ready to start on my Masters. I think this is going to be good for both of us.’

You’re hired.

Why yes, C, I think this will work out just fine!

Next: my first appointment and assessment aka OMG how did I let myself get so out of shape that jumping jacks make me want to vomit!!!

Vacay with (NO!) RA

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Last month, I took my very first long vacation since being diagnosed over 6 years ago!

I was a little worried about how I’d handle it if I flared on the beautiful island of St Maarten so I began preparations in March.

I had two goals: I wanted to rehab my ankle so that I could walk and even hike if we wanted to, and I wanted to really focus on taking care of myself to build up stamina and try to belay the fatigue.

I started working out twice a week with a trainer, something else I haven’t done since this whole journey began.

Lemme tell you: from March to May, I have seen a tremendous positive change in my body. I have avoided working out for a long time for fear of injuring myself. What I’ve learned is that I can do a lot more than I think I can, and doing it makes my body a lot stronger! That’s a whole different post though which will happen soon!

Anyways, so I got up at 5am 3 weeks ago and met 3 of my best friends at the airport. I was stoked: two months of hard work and healthy eating let me get on that plane without an ankle brace, with wrists that could actually lift my carry on, and 13 pounds lighter. I found reassurances in the emergency Pred pack my doctor gave me.

It. Was. Exceptional.

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Here we are right after we landed at Princess Juliana Airport, getting our rental car. What does a rental car in the Caribbean look like? Brown gremlin. For serious. And drivers on the island? SCARY!

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On our way to the French side, we stopped and hiked around for photo opps like this. HIKED! And I was FINE!

We spent the rest of the afternoon on Orient Beach…yes, the nudey beach and a lady never tells is the answer to the other question you’re thinking right now.

I will say that spending an afternoon on a beach full of naked old people tells me that life, age, and gravity is not kind to anyone…comforting to us patients to know as we grow older. :)

I went snorkeling twice.

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Snorkeling…ahhhhhhhh…that’s like the dream version of hiking for this gal with RA!

My favorite day was our last day where we took a boat around the whole island, stopping to snorkel and explore small uninhabited islands.

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Tintemarre- I wish they’d just left me there. I’d be fine! So beautiful and completely relaxing.

And then all too soon, it was time to go.

While I had no flares while I was there and I certainly overdid it with the activity (and the rum punch), I woke up my first morning home feeling pretty lousy.

I flared pretty badly for three days but got it under control with lots of water and rest.

I never had to touch the Pred pack.

And I wish I could go back there tomorrow because for that week, I really did feel normal.

Thunder Cloudy Mood

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Most of the time I am pretty happy but today I feel like this:

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I usually hesitate to post when I feel this way, after all, this blog is about being positive. But it is also unrealistic and dishonest to say that I’m always feeling positive.

I don’t physically feel bad, the RA is fine, I actually am starting to feel like me again. But I’ve again had some unexpected personal hits that maybe I will blog about when it’s not so raw.

Please send good thoughts my way; hits on top of living with this disease are especially hard…

10 Things About My RA Experience

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I saw this on another blog and stole it because I thought it was interesting to mention the things I probably don’t think are bloggable on their own but are still kinda interesting.

Ten Things You May Not Know About My Experience With RA

1. When I was newly diagnosed, I ‘quit’ my first rheumy in a blaze of glory. He made me cry and his admin was giving me a hard time about releasing my records. I had a moment and called her a name I’m too ashamed to type here.

2. I have permanent erosions on the ball of my left foot. It only bothers me when I stand for a long time in bad shoes.

3. Before I was officially diagnosed, my feet hurt so bad that I really did wear tennis shoes with a business suit. More than once.

4. I have tried every detox diet for arthritis out there including the one where it has you chug saltwater to make you…um…use the bathroom. Which, FYI, doesn’t work. Chugging that saltwater and having NOTHING happen sucks. Waking up the next day 7 lbs heavier due to water retention…also sucks.

5. I can give myself shots, get regular bloodwork, and have had infusions and aspirations. They don’t bother me. But I’m terrified of tetanus shots, TB tests, and the dentist.

6. I didn’t really tell anyone I had RA for the first two years I had it. I’m still very protective over who gets to know the details.

7. The majority of my friends have no idea that this blog exists. Even still, I make a point not to mention specific or identifiable stories.

8. I’ve only ever let one person see me give myself a shot. It just feels too personal for some reason. I’d actually be more comfortable walking around naked.

9. I had weird hormonal things happen in the months before I started having symptoms. Pre menstrual depression so severe that if I thought you had looked at me wrong, I’d burst into tears. Even today, if I start or switch birth control pills, I have strange aches and pains for the first month or two.

10. The first two places I experienced inflammation were the arch of my left foot and my left pointer finger. In both cases, I literally woke up one morning and it felt like I’d been stung by a bee.

And there you go! Do we share any of these? I’d love to hear.

Guess who ran a 5k?

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In the interest of keeping me honest, I will share this with you:

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Don’t judge: a gal’s got to have a little fun every now and then, right?

I’m excited to report that since my last jump rope escapade, I have completed my first 5K in four years.

I guess I should admit that it was relay style and that I only ran .7 miles but still: this lady who has struggled in the past to even walk normally ran!

I joined three friends for the Biscuitville Bowl, thrown by my fave restaurant from high school. If you’ve had Biscuitville, you’d know that it’s like Bojangles except BETTER. I highly recommend the butter biscuit and cinnamon apples. YUM. If you haven’t had Biscuitville, I am so so sorry.

Anyway. Each of us ran .7 miles but each leg had an obstacle. In viewing the course, I decided that the buttermilk slip and slide was the better option; other choices included a climbing wall followed by a sweet tea slide (falling hazard) running through tires covered in grits (slipping hazard), or crawling army style through jelly (um no…just no).

I was third and when my friend ran up and handed me the baton, I took off at NASCAR speed at a respectable pace. As I came upon the inflatable slip and slide, which was like a jump jump with lanes, I saw two ladies holding buckets of buttermilk. As I got closer, I saw them throwing the buckets on the runners in front of me as they ran and jumped to slide.

Immediately I thought OH HELL NO and as I ran to the entrance, I stopped. They readied their buckets and told me to jump as I looked them dead in the face and, like the good team player I am, said ‘you will not throw that on me.’ I jumped and slid maybe three feet, got up and jumped out and guess what? There was no buttermilk thrown on me.

The way I see it, RA patients can try hard but shit gets real if I smell like dairy.

I did still get completely covered in the front but I didn’t have to run the rest of the course with sopping wet milk hair. And believe, everyone else did.

The running wasn’t that bad. Was it as easy as it was 7 years ago? No. But I didn’t hurt and kept it to a moderate pace.

As I ran up the last hill to hand off the baton to my teammate, I saw a very unwelcome surprise. They were spraying us with flour.

I repeat: They were spraying us with flour.

So this RAer who is already nervous about running, who is already tarred in buttermilk, is gonna get feathered in flour?

I think not.

As I approached, I waved my hands and yelled ‘I have contacts in.’ Alas, nobody listened as I ran as fast as I could through the flour haze, eyes clamped firmly closed.

Still, I felt very accomplished when I gave that baton to my friend. My feet were fine, my knees were fine and even though I was covered in a buttermilk/flour paste, I was good.

Today, my butt and abs are screaming at me and I can’t decide if I’m sneezing out pollen or baking products. But my effort has earned me some guilt free goodness and happy thoughts!

Amazing what a little incentive does

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And March comes in like a lion…with no blog posts…and goes out like a groundhog with death threatslamb…with no blog posts. Seeing as it is now April and it was seventy degrees two days ago and then it snowed today, let’s just pretend it is still March. Also, does the Secret Service investigate assassination threats on groundhogs? If so…oops.

I’ve been busy. Good busy, bad busy, busy busy. March brought some personal read:non-bloggable bumps but with the bad comes the realization that this disease has given me some perspective on dealing with things. Perspective being that I am a lot tougher than I think I am.

Along those lines, I have a big vacation planned with some girls coming up soon. In our pre vacay prep, they are all excited about hiking up this cliff where you can see all of the island as well as St Kitts and Nevis. Instantly, I’m dying a little inside thinking that I won’t be able to do it, that I’ll be a fun sucker, and they’ll be disappointed.

I stewed and over analyzed it as I usually do and then made a different decision: I started PT and working out with a trainer.

Y’all. I JUMPED ROPE tonight. Sure, it wasn’t pretty and it was only for a minute. I hit myself in the head and the shins multiple times. But it happened! A month ago, I wouldn’t have even tried.

I’ve been working hard at building ankle strength and shoulder stability. Does it make the inflammation go down? No. But working the muscles around the joints actually feels good (after) and I’m walking and moving much easier.

Two weeks into this new regime, guess who walked a mile in sexy black boots? This gal!

It might not seem like a big deal but I haven’t been able to comfortably wear those particular boots in over a year!

Working hard at rehabbing my body is not easy. I think back to when I was diagnosed, when I was literally in the best shape of my life, and get very frustrated at how weak I have let myself become. It’s not easy pushing like this in this ‘new’ body but it makes me mad at myself when six years into this mess, I see marked benefits in mobility after only a few weeks of concentrated, supervised effort.

So. No IronMan in my future but I realize that for my body, this needs to be a priority beyond hiking on a vacation. It’s difficult yes but I’m strong enough to do it. I just didn’t know it.