This past week, I was the unlucky winner of the worst stomach bug I’ve had in years.  I started vomiting Wednesday night (Happy World Arthritis Day to me y”all!) around 10 and it continued until Thursday around 3pm.  I will spare you the gory details but it’s Sunday night now and I STILL have no appetite.

When I sleep, I like it completely silent and pitchblack.  I have a white noise machine, blackout shades, and a sleeping mask. The only acceptable noise is rain. When I don’t feel good, I must have it quieter that completely silent and if I could figure out how to transport my room into a blackhole, that would be fabulous.

Thursday was just horrible.  Even with my blackout shades pulled as tight as possible, there was still light. I dozed very fitfully in between getting sick every 30 minutes, couldn’t get comfortable because I felt so lousy and because of the damn sunshine, and had really strange, disorienting dreams when I could sleep.  Several times, I woke with a start because I swear to God I heard footsteps in my room, knocking, and then a phone ringing that wasn’t mine.  I remember thinking am I sick enough to hallucinate?

I live next door to one of my friends from college.  Our bedroom walls are shared and are very thin which has led to some, um, awkward moments.  Last year, when I had bronchitis, she texted me at 3am telling me to get either some water or a cough drop because the coughing was keeping her awake.  So yes, when we’re both in our respective beds, we’re really only 2-3 feet away.

Anyways.  She gets off of work at 330 so I texted her at 315 that a) if she stopped and got me some Sprite on her way home, I’d give her $20 and b) if the vomiting didn’t stop soon, I may need her to drive me to urgent care.

She texted me back immediately that she’d been home sick all day and had I been in bed and getting up all day because she swore she heard walking.  So yes, we were both sick as dogs in bed 3 feet away from each other hearing each other jump up to get sick and thinking we were losing it.

The whole point of this is:  I’ve noticed when I get sick like that, my RA is usually better.  I don’t know if it’s my immune system sending an evite to my joints saying PARTAY IN THE STOMACH or what.

I also wonder if it’s the lack of food.  Case in point, I’m still feeling better RA wise because my stomach is still kinda blah so all I’ve had to eat since Wednesday is Sprite, soup, and then I got crazy tonight and had a hamburger patty (which is not sitting so well. BOO.)

Or maybe all my immune system cells that are normally attacking my joints are just hungover from what they did to my stomach?

Who knows.  It’s just nice that I only have to deal with one problem at a time.

Happy World Arthritis Day, y’all!

In honor of our fabulously “blue day,” this onset story post is written as part of the IAAM World Arthritis Day Blog Event, an event with participants from MANY other blogs, support groups, non-profits, and major advocacy groups.  How awesome is it when this fabulous community of ours puts together a united front!  Because, honestly, that’s what we HAVE to do in order to make changes for the better.  If you’re a blogger reading this and want to know how to participate, email me (or comment) and I’ll send you the scoop.  Also, I encourage you to visit the IAAM Facebook page to see other blogs participating AND (if that’s not enough), post your own onset stories in my comments and not only will I approve the comment, I will also repost your comments in a seperate post so that all may read it.

So…enough instructions right?  On to the story!

Some of you may have seen some recent press and advocacy efforts in response to some absolutely assinine socially irresponsible comments made by Dr Phil on two seperate occasions.  According to Dr Phil, obesity causes rheumatoid arthritis.  Yep, you read that right.  And even better, this was said by a man whose dissertation was entitled “Rheumatoid Arthritis: A Psychological Intervention.”  So perhaps his psychological intervention would be to throw carrots and rice cakes at us patients?

I have a hard time writing about my onset so bear with me if this is a bit choppy and rambling.

I grew up dancing.  I was best at ballet- I’ve always been long and lean and best at the graceful stuff- but I loved tap because it was LOUD and jazz because it was always to fun music.  I danced competitively in high school and then continued dancing at frat parties in college. (Sorry Mom and Dad.)  After college, I got super into group exercise classes and then running.

In the six months before things really got bad for me, I dealt with the following events in a very short period of time: a brother deployed to Iraq, some serious job drama, a suicide in my family, a lot of family in-fighting due to the suicide, and a pretty severely broken heart.  Family who may read this, please don’t take what I said above the wrong way. It is simply a fact that we all had different opinions, reactions, and ways of dealing with it.  Nothing wrong with that.

So what did I do to deal?  I controlled everything I could about myself because it was the only thing I felt that I had any say in.  I ate very cleanly and I worked out incessantly.  Ironically, one of the worst situations I’d ever been in propelled me to live the healthiest I’ve ever lived in my entire life.

One of my last memories before starting to have problems is taking a kick boxing class with one of my guy friends at the gym.  I wanted to try it and he, a former collegiate athlete, warned me that it was a hard class.

Oh, I should probably mention that I’m competitive.

I was in great shape.  I was working out with a personal trainer 3 times a week, running, lifting weights, RUNNING STAIRS, and even wind sprints.  I was also keeping a food diary and forcing myself to eat protein bars and shakes.  I do not miss that part.  When I worked out like that, I felt good about myself.  Hell, where I was at emotionally, it felt so good to feel good about ANYTHING.

I remember being totally exhausted halfway through the class, looking over and seeing him still going, and thinking oh hell no am I going to let this boy outdo me in something this close to a dance class.  That gave me the energy I needed to keep going. 🙂

Towards the end of the class, they had us pair off and air punch each other.  I gave him one hard right upper air hook, slung a whole bunch of sweat in his face, and grinned.  He looked at me, shocked, and started laughing so hard, he had to stop.

AJ-1 Former collegiate football player- 0

And yes, that felt GOOD.  As did the long, hot shower I took afterwards.

I started having problems with my feet a few months later.  Quite literally, my left foot had been sore for a couple of days and I took a run on a treadmill at the gym.  Okay, okay.  So the real story is that I was really angry at a boy for being a douche so I took an anger run which, for me, was usually a longer, harder run that normal.  But jerky boys stress me out and my choices were run it out or say something I would later regret. I ran for probably 40 minutes.  Headphones on.  Anger mix playing- if you’re ever interested in good tunes for an anger mix, I highly recommend Christina Aguilera’s Fighter and Linkin Park’s In The End.  Suffice it to say, I was pounding my feet in a way that I definitely shouldn’t have been. When I stopped and stepped off the treadmill, I was in so much pain that I almost hit the ground.  I remember thinking great, I should’ve just said what I was thinking because now I’m going to hate him forever for breaking my foot.

My x-ray the next day revealed nothing.  No break.  I was told that it was probably a stress fracture and that they would redo the x-ray in a couple weeks at which point we would probably see scar tissue to confirm it.  I was also told to stay off of it…which I didn’t after it started to feel better a few days later.

A week later, the other foot started hurting in the same place.

I continued working out with my trainer and mentioned the pain to her.  She told me it could be due to having shoes that weren’t supportive enough.

I took myself to an expensive shoe store in town and got a pair of customized running shoes.  Seriously customized.  They put me on a treadmill in a pair of shoes with sensors so that they could see where I put my body weight when I ran and walked.  They selected a pair of shoes for me based off of that and put additional support in them for me based off of the sensors.

Those were not cheap.

I continued working out in my new shoes and the pain continued, duller but persistant.

I went back to the doctor and had both feet xrayed.  Nothing showed up on either.  It was very frustrating.  They ran all sorts of blood tests and by chance, looked at my rheumatoid factor based on a history of severe and chronic allergies that had required shots for several years.  I remember thinking surely, SURELY, I don’t have yet another autoimmune thing going on.  That would be crazy.

The pain continued with my left foot significantly worse than my right.

I was at work a couple days later when I heard my cellphone ring.  I didn’t have time to answer so I figured I’d just deal with it later.  A few minutes later, I had email to my work account from the nurse at my doctor’s office asking me to call her immediately.

I wish I’d kept that email.  Because that literally was an email that started this whole ball rolling.

My diagnosis was confirmed several weeks later.

Someday, I will have the courage to blog about the place that diagnosis sent me when all of a sudden, it took away the only thing that made me feel good at the time.  You can probably imagine that it wasn’t pretty.

You’re probably wondering what those numbers at the top are.  They are a direct response to Dr. Phil.

133- my approximate weight at diagnosis

26- my age at diagnosis

32- my current age

To raise awareness, please post “your numbers” on your blogs, Facebook, and twitter.  Feel free to use the metric system if you like it better or your BMI. 🙂  Do not post what the numbers are, just that those are your numbers.  We are asking everyone to do this and then to reveal what your numbers mean at the end of the day.

Take that, Dr. Phil!

I realized it awhile back and got super depressed about it.

It’s not that I didn’t KNOW, its that, in my mind, it couldn’t apply to me.

I took a blogging break because I didn’t want to write and spew depression.

And then my buddy, RA Superbitch, passed away. I never addressed it on here because I just didn’t know how to.

The anxiety deepens.

I was forwarded a blog written by Sara Frankl-gitzengirl.blogspot.com- last week. Sara has AS and is in hospice.

I read the whole thing Friday night and bawled my eyes out.

It’s just so unfair.

None us of asked for this. None of us deserve this.

There are so many things I want for myself and I am scared shitless I won’t get to because of this damn disease.

Don’t get me wrong…I know that mine is easily controlled and currently under control…but who knows what tomorrow will bring, right?

I’m feeling a lot like I did when I was first diagnosed which scares me. I am pissed. I am sad. I am oh-so-frustrated. But most of all, I am terrified.

This really is happening, isn’t it?

So what do we do now?

So….on Monday I turned 384 months old. And yet again, I am posting an update mocking my mommy Blogger friends.

So let’s see…where are we at…

Height: 5’6

Weight: (insert hysterical laughter)

Language: still foul. I have instituted a Starbucks policy: when I’m mad at work, I take a walk and get a coffee.

Nervous system: jacked up on caffeine frequently. (see above.)

Motor skills: about the same. Still problems with hands and fingers although still capable of throwing out a bird in traffic if necessary. As long as it’s held very low. Underneath the console. So nobody gets shot.

Goals: My birthday present to yourself this year is health. Period. I are willing it to happen. And I’m going to do something unusual this time: I’m going to follow my doctors orders AND I’m  going to consciously do something positive for my health everyday, even if that something is only taking a few minutes to get in bed early to watch tv and relax!

Reflection on the past year: Loads of fun…after having such a debilitating flare, I went all out when I felt better. And maybe not in the healthiest of ways. But I’m sure you can relate! Just being so happy to not feel so crappy makes you do things that maybe make you feel…crappy.

It’s time to find that elusive happy medium!

Or more aptly titled…what a difference a year makes!

I remember going to the lake once almost exactly a year ago. I was on the upswing of the worst flare I have ever had and was really weak.

Weak to the point that I was nervous to be in the water without a lot of people watching me and some pretty serious flotational assistance.

I just had a horrible sinking feeling that I was so weak that I could very easily get tired and experience…well…a horrible sinking feeling!

That day was a fun day only because I have some phenomenal friends that look out for me. Well, and also because one of my friends had too much to drink and decided to lay down and fall asleep in the middle of my friends front yard.

Oh yeah. And I have pictures just in case she ever decides to go into politics! I’m SUCH a good friend. 🙂

Yesterday, the same group of friends got together for another day on the lake. We tied up at the Sand Bar (which is actually not a sand bar but a little island with an even smaller beach that smells like dog poo) with approximately 100 other boats complete with dj’s and a local bar driving a paddle boat throwing out free coozies.

We spent the whole afternoon swimming, talking, and socializing with other (hot) boaters.  At one point, me and another friend swam out to retrieve someone who was talking at another boat far away. It was getting late and we hadn’t been able to flag her down!

I realized when I got there that I had swam a good quarter of a mile from shore. With only the assistance of two pool noodles.

I thought about how panicky that would’ve made me last year and then I felt…panicky.

Not a good situation to get freaked out in!

But then I did a body check. Not tired. Not sore. No muscle cramps. Not even out of breath!

The only reason I was panicky was because I was afraid I might get panicky.

Isn’t that what happened to Harry Potter in being most afraid of the dementors? That he was only afraid of fear?

I hope so. Because that is what I told myself to snap out of it.

I swam with the girls back to the boat, careful not to look at how far out we still were, and before I knew it, I was touching slimy creepy lake bottom again!

I embarked on an adventure earlier in the year entitled “AJ learns how to cook even though she despises it and is horribly bad at it.”

Horribly bad.

I can’t remember if I’ve blogged about this or not but once, I made something so bad that after tasting it, I really did dry heave over my sink.

I am very talented at heating.  And ordering take out.

But that is such a hard way of eating if you’re trying to limit gluten, dairy, and red meat like I am.

Can I just say how hard it is for me to limit these things?  Did anybody see the movie American Beauty and remember the scene where she is laying naked in a bed of roses?  Um, yes….I’ve similar dreams of myself laying naked in a bed of penne! angel hair! brie! gouda!

It’s quite disturbing.

But I did want to share a couple of recipes that have worked for me in my ongoing “deny the carb and  cheese obsession” regime that is trying very hard to rule my life with 50/50 success.

Homemade Salsa

2 tomatoes, preferably from the farmers market

A dash of lime juice

1 onion, cut into slices

1 clove of garlic

A pinch of cilantro ( a little bit goes a long way!)

Put ingredients in food processor, chill in frig for one hour.

Enjoy with corn chips or marinate  chicken in it.  It’s fabulous!

Homemade dairy free gluten free pesto

1 cup of loosely packed basil (if you grew it yourself, make sure no bugs. Ew.)

2 tablespoons olive oil

1 tablespoon flax seed oil

1 tablespoon walnut or almond oil

2 cloves of garlic (or 1/4 teaspoon of garlic powder…very important no more than this…I learned the hard way and breathed FIRE.)

Put in food processor and enjoy on grilled chicken or salad.

Enjoy!

 

One of the few things I know for certain that I want for myself is children. Having RA has thrown a wrench into that plan.  I still want them but have a ton of doubts and fears.

Keep in mind, I am a closet fan of all the “super sized” family shows.  It’s like watching a train wreck. I DO NOT want 20 kids.  OH HELL NO.  Unless I can have a TLC show titled “ 20 Kids By 20 Different Daddies.”  That sounds like a lot of fun to shoot! Also, there will be no octo-AJ. Yikes.

My fears are compounded by the fact that of my close friends, one has triplets and SIX have twins.  And yes, they have over-shared on what that was like, leaving me with only one logical conclusion: we were seriously evil Satan spawn when we were younger and this is God’s sense of humor.  For the record, I want no more than two.  In witnessing my friends and their husbands wrangle 3+ kiddos, I’ve noticed that it’s a bad, bad thing to be outnumbered.  So yeah, two would be the limit and I’d be just fine with one.

But I have some pretty serious reservations; do I trust my body to safely grow babies? Um, not right now.  And how would I feel if I had children who someday were diagnosed with RA?  Um, devastated.  I’m not sold on the fact that I will ever have to have biological children. And I’m ok with that.  There are a lot of children that need families.

But no matter how I get them (birth, adoption, Target), I also have reservations about my ability to take care of them.

Let’s face it.  I don’t particularly know how to interact with children.  I haven’t been around them extensively since high school when I worked the church nursery to get out of having to go to services.  And even then, I preferred the babies, I preferred them sleeping, and I didn’t do diapers. I dislike strange smells, things that are dirty and oh.my.lord the sound of crying is like nails on a chalkboard to me.  Just make it stop!

Besides brief interactions with kiddos of friends,  I haven’t been around them much since my RA diagnosis and am scared that I won’t be able to lift, hold, and everything else you need to do to take care of them.

But when my friend asked me to babysit this weekend, I couldn’t find a reason not to.  Besides, her boys are cute as can be, fairly well behaved around me AND it was early on a Sunday morning so surely they would be asleep the whole time, right?  (Mommy friends…it’s ok to laugh.)

I arrived at my friends house a few minutes before 9 to get instructions.  There was an unusual sound echoing through the house when I walked in: an 18 month old chatting.  Ok, scratch off not awake.  She handed the also awake 4 month old to me and asked the 18 month old to show me where his toys were so she could make a clean getaway.  I was led into the next room and all went well for the next 3 minutes until the 18 month old realized that mama was gone.

I’ve heard people talk about kids having complete meltdowns but have never witnessed it in person.  I swear to God, the kid turned purple, started screaming, and threw himself down on the floor with arms and legs everywhere.  Oh my God, it sounded just like the Exorcism of Emily Rose.  I stood there for a moment, holding the baby, with wide eyes and all I could think was “BIRTH CONTROL, BIRTH CONTROL, BIRTH CONTROL.”

I was afraid he was going to hurt himself so I eased myself down onto the ground to sit next to him while maneuvering the baby to my other side so that he wouldn’t get kicked.  Y’all, that took coordination I didn’t know I had!  Rickety knees, sprained ankle and all! But it didn’t hurt.

I let him cry for a minute, patting his back, and then asked him if he wanted to sit in my lap and let me read him a story. Because yeah, that’s the only trick in my toolbox. I had no idea what he liked or was comforted by: my head had stopped screaming BIRTH CONTROL and was now screaming REDIRECT, REDIRECT, REDIRECT.

As soon as I asked him that, he launched himself onto me so hard that it almost knocked me over.  He death gripped my neck, sobbing, and in the process, elbowed his baby brother in the face. So now baby brother is howling too.

So, let me reiterate the scenario for you.  Girl with RA who doesn’t have much experience with kids and is fearful of her physical ability to handle kids accepts what she perceives is an easy babysitting job.  She is now pinned to the floor against a wall with two screaming babies. Screaming directly into her ears. Also, I may or may not have had a slight hangover.  (BABYSITTER OF THE YEAR!)

I think this is what my mother may call “payback.”

In the end, we pulled it together.  While both boys were crying on my shoulder and I was pinned against the wall, I was able to snag some sort of light up musical toy with my feet.  I maneuvered it until I could grab it with my hands and started playing with it myself while narrating what I was doing to Big Brother.  Big Brother eventually became interested in the toy and let go of me enough that I could move.  Holding tiny Little Brother, I easily stood up and moved to a chair.  When my friend got home, she was greeted by both Little Brother and Big Brother sound asleep in my lap.

In all honesty, I had a blast.  Little Brother fought going to sleep so hard that he’d sleep for a second, wake up and look at me bleary eyed, and then slump over again on my shoulder,  It was hilarious!  Big Brother kept bringing ME toys to play with and when he finally crawled into my lap to sleep with Little Brother, I knew that if I had to get up holding them both, I could. Easily.  Without pain.

That was an important realization for me.

Since babysitting, I have made an addendum to my two kids rule: they must be at least 4 years apart.  Because there is no way I could do that for more than a couple of hours.

A little non RA filler that I’ve had on the brain while I continue to ponder other less funny things. 🙂

Dear Thor,

I realize your name is probably something boring like…well, I don’t want to offend so I won’t give any examples. But after two years of frequenting the same coffee shop by my office and intense discussions amongst coworkers, that is what we have dubbed you. You were almost Don Juan and also Seamus but let’s be honest: you’re definitely a Thor.

Because we would all really like to see you dressed as a Viking.

Maybe it is your ridiculously tone and tan body? Maybe it’s your shaggy blond hair that I normally would make fun of, especially because you’re too old for a haircut like that, except that you totally own it? Maybe it’s because I swear to God, you move in slow motion with the facial intensity of an (early 2000) Abercrombie model?

No, I don’t have a thing for Vikings except for Eric on True Blood…but you would make an exceptional Viking.

Thor, on behalf of my whole office, I’d like to thank you for slowly sauntering into the coffee shop every morning, ordering your venti bold, and helping three girls have a better day. I appreciate the fact that you require a good, strong cup of coffee prior to defending humanity from evil. That has to be a weighty job, and certainly explains the brand new BMW 7 series, expensive suits and shoes, flawless skin, and ability to make certain looks and attitudes that would typically have me screaming ‘douchebag’ in my head seem charming.

But do you know what we find most intriguing? In the midst of all of your ‘look,’ when you pay for your coffee every morning, you pull out the oldest, crappiest, beat up mesh wallet commonly found in discount stores and mass retailers.  The first time I saw it, I did a doubletake and thought OMG! HE GOT THAT AT TARGET! JUST LIKE ME! Seriously. If it were not for your crappy wallet, we would’ve dismissed you as having no depth without further thought. Upon further reflection, we are convinced that is how you’ve disguised your special hammer. (Innuendo not intended.) And I respect and appreciate that. I really do. (Sarcasm not intended.)

Please don’t think we’re stalking you. You do NOT need to find a new coffee shop, I promise. It’s just that over the course of two years, you’ve become quite intriguing. We wonder where you go and what you do all day… trip to Asgard, lunch with Jane, fighting with Loki…All because of that wallet. We realize that given the city in which we live and the demographics of the neighborhood in which our office is located, it is most likely that you are sitting in a bank. But still…three girls can dream, right?

Thor, on a personal note, you’re not my type. Not even close. I like them tall, lanky, never blond (my dad and brother are blonds…that creeps me out), and quite a bit more casual. But in our obsession with you that revolves around a wallet, I realized that it’s just as mean to stereotype and dismiss someone very good looking as it is to someone notsomuch. Interesting, huh?

Now go save the world with your ratty wallet!

No, I am not in a cave with James Franco.  Although I’d like to be.  Very much.  But I couldn’t really post pictures of that.  Except that I’d have to…for proof.

Instead, I find myself between a rock and a hard place.  I have been running, running, running for years now.  I have always prided myself on being super dedicated, super hard working, super organized, on top of it, over involved, there for everybody whenever they need it however they need it.

At the expense of myself.

I’ve always known that last part.  Maybe I didn’t acknowledge it. It certainly didn’t bother me because being that person has always been fulfilling.

But there have been certain people and certain situations recently that have made me realize that I’m not being it all anymore:  I’m just being used.  

These people and situations have sucked up so much of my time, energy, and emotional resources that I am now my own worst nightmare:  I’m a wreck. I am having a million different balls thrown at me and I’m dropping every single one of them.

Worse than that, they are sucking so much out of me that there are days when I have a hard time getting off of my couch.  I’ve completely lost control over a lot of these things and I’m a mess.  Literally.  A mess.  As in “Hey Amanda, Hoarders  called.  You interested?”

And on top of all of this, I have to deal with my RA which is doing ok right now but still, it’s just another thing to worry about and oh dear God, the pressure and fear of dropping a ball there, right?

I apologize for being so vague.  That pretty much goes against what I try to do here but I also make a point here to not speak specifically about people in my life unless it’s positive or unless I know there would be no repercussions.  Unfortunately, I live in the South, we all know how to use Google, and let’s face it ladies: our clique mentality is sappy bitchy passive aggressive sweet.  Bless your heart.  I’ll pray for you. The reason you’re hurting right now/things keep happening is because God is trying to get your attention because he doesn’t have your heart like he should.

Oh yeah…repercussions are fun.

I’m just tired.  Tired of people being so presumptuous on my time and resources, tired of being upset about it, tired of having to pretend everything is ok and scared as to what the reaction is going to be when I finally decide it’s time to be quite honest.

And that is my grand excuse for my absence of late.

I will be back to regular scheduled programming very soon.  Promise.

Make sure you head over to IAAM to check out their first official fundraiser as a 501(c)(3) non profit!  It begins at 12AM on July 17th and is broken down into two parts: an online art show and a live auction.  Both feature original art and crafts handmade by patients or by people on behalf of patients.  You can totally pick up some photos I took while still living in SC or a super colorful baby blanket my mom made for this!  Ch-ch-ch-check it out!

I am trying to get a post together to explain my absence of late…you know the saying…when life gives you lemons, grab vodka…but when life gives you shit, make NOTHING.