Category Archives: Uncategorized

7 Year Diagnosiversary

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So you break a mirror, you get 7 years of bad luck, right?

Happy 7th RA Diagnosiversary to me!

If my RA was a human child, the little Satan spawn would be a first grader. Perfecting how to read, starting to get sassy, developing a sense of humor, playing all the requisite 7 year old games. Heck, it may even have its own Facebook page. All in all, it would be growing more independent of me and preparing to leave my house in 11 short years.

In reality, RA itself is very much like that kid. Except my RA specifically is Doogie Howser. Let’s check off some milestones, shall we?

Learning how to read: while it certainly can’t read aloud to me in bed from my Nook (which would be pretty stellar for it to do by the way, maybe consider it a type of body rent?), it can certainly ‘read’ when it would be inconvenient to show up and have a temper fit. My RA needs to be strong armed to the restaurant bathroom for an attitude adjustment, in my opinion. So reading, at a very high abstract level: check.

Sassy. Sense of humor. Playing games…these are all very similar and detailing all of these is…well…part of the point of this blog. Read back some and I think the evidence speaks for itself. Check, check, and check.

Having its own Facebook page? Duh. It got that in 5k. It is well connected via social media. Check.

Preparing to leave my house in 11 short years? I sure as hell hope. I sure as hell am working *diligently* to make that happen. Diligently I say! I would be thrilled to lose custody early. But just in case, Orencia boarding enrollment is completed and right now, it’s parent day at orientation. I hope to soon see your teary red face in the rearview mirror. Partial very faint check.

I’m still not sure if I broke a mirror or if I just have some sort of blood sucking demon attached to me. Seven years of bad luck…I’m curious to see what the next seven bring.

Happy Diagnosiversary RA! Mama’s gonna go have some wine and hope CPS removes you soon enough!

Note: I would NEVER EVER have these emotions toward a real human child.

Happy New Year!

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This is the only picture of me that exists from my annual New Years Eve celebration. THIS is what ‘I have bronchitis and am only interested in being asleep in bed a good two hours ago yet you made me sit here and drink a huge cup of coffee I don’t want and wear a stupid hat’ looks like. A regular Mary Sunshine!

Yet as unthrilled as I was to have to interact with other human beings, as coughy and sneezy and sleepy as I was, having a cold or bronchitis is actually thrilling for me because until I’m better, my RA symptoms drastically reduce.

It’s the best feeling (minus the plague symptoms) to wake up warm in bed, stretch, and feel…different. Sure- my hair may be slobbered to my cheek because I’m mouth breathing due to congestion. Sure- the movement of stretching may unleash a maelstrom of coughing. Sure- the wheezing is quite attractive with the comfortable sweat pants you should’ve thrown away years ago but they’re just oh so broken in.

But there’s a calmness in my body too. Because for that day, that’s all that’s really emergently wrong and to be frank, it’s not all that emergent after the doctor confirms its not the flu.

So while I’m not enjoying late night forced socializing, I’m enjoying a nice respite of symptoms to usher in a new year.

Happy Festivus!

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In lieu of a Tuesday post, we are going to have a brief Festivus celebration.

If you aren’t familiar with my favorite holiday, Wikipedia is your friend. If you dislike Festivus and/or Seinfeld, the lovely red x in the upper right hand corner…see it…click it. :)

I will now air an abbreviated version of my grievances for your viewing pleasure.

Left ankle: your lack of cooperation in the healing process disappoints me. Don’t call my bluff on not following doctors orders. To that I say IRRELEVANT. I cloth you in the finest socks and shoes that money can buy are sold at Target or that I have a coupon for. Orders followed or not, this is my house so we go with my rules.

Wrists: Didn’t Heath Ledger say ‘I can’t quit you?’ Learn that phrase, love that phrase, LIVE that phrase. This resistance to forward flexion will cease; it is your decision if it will be on your terms or mine. You have let me down in hurtful and malicious ways. I will concede that you are useful in getting me out of things I don’t want to do. BUT. That is to be my decision and not yours moving forward.

Blue Cross Blue Shield: The language to describe my disappointment in you doesn’t exist. Take the most vile thing you can think of, multiply that times infinity and then take that and cube it. I’m not a math person so I can’t give you what that exact quantity of grievance would be but you should know that it is a whole lot. Grievous disappointment.

RA: Did you see my standing ovation and hear my boisterous cheers of BRAVO? Oh, you didn’t? Oh right. I didn’t give you one. Because you suck. You are on notice. See notes to wrists and ankles. MY house, MY rules. YOUR way vs MINE. I don’t see any ‘RA’ in ‘your’ but I sure as hell see ‘me’ and ‘I’ in ‘mine.’ And that means that I’m the boss of you.

I am bound and determined that by next Festivus, we will not be airing these same grievances. That is a threat and a promise.

Happy Holidays and determined wishes for the healthiest 2013! I am excited and quite determined to regain control of my health, and very thankful that changes I’ve made in 2012 have finally allowed me the time and clarity to actually follow through.

Take It Back Tuesday, The Fourth

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Aaaaand it’s Thursday.

Whatever. Begins with a T and ends with a day. Close enough.

So I missed this past Tuesday because I’ve taken back the art of the nap.

College ruined me on naps. In this setting, I created the expectation that a real nap requires 3 hours of sound sleep. I do believe that’s a full REM cycle. And then I’d wake up at dinner in a completely evil mood.

I don’t like being in a bad mood so I honestly haven’t taken one since unless I was sick. Sick also coincides with bad mood.

But I came home from work the other day and I was exhausted. Exhausted, achy, kinda flary. I had an hour before I had to meet a friend for a networking thing and all I wanted was to lay down on my comfy couch with my fluffy fleece blanket.

So I did!

I slept for 30 minutes and went on to my event feeling like a new person. Good mood and less achy! I’ve officially taken one every day this week.

Naps are now added into my treatment arsenal.

What are you taking back?

To my 16 year old self

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Hey! Hey you! With the Friends haircut and helmet bangs!!!

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You are between conflicts in Iraq so I’m unclear as to what you are trying to deflect with that thick fringe of awesome. I have it on good authority that they did not hold special powers for you so please hurry up and grow them out.

Now. I know you are VERY proud of that uniform. I know you trained your butt off to get there. Years of ballet and jazz and tap. I particularly respect how you practiced your tryout dance by yourself in the backyard. Booty shaking and blasting Coolio while your Southern Baptist neighbors watched from their porch.

You worked hard for it and you didn’t care what other people thought. I know it’s hard to have that attitude about life as a whole in high school but you’re learning and it will take you far in the long run. However, you will forget this for awhile in college, engage in some lemming like behavior, and have a time finding your way.

But I promise you, finding that again is just as satisfying as pop, lock, and dropping it in front of the fundamentalist freaks. It will also keep you somewhat sane when you face some major adversities.

Back to the uniform. You are struggling…don’t deny it because I KNOW…because on the outside you are this proper little package. On the inside, you are an observant ball of sarcasm, cynicism and sensitivity. Can I tell you a secret? THAT’S OK! Just because you can’t relate to girls who squeal OMG doesn’t matter. Move on. Again, these qualities that you’re so insecure about and try to hide will carry you far. Want another secret? You will come across this way your whole life and it will let you get away with murder. Seriously. You say something snarky and people will never be sure if you’re kidding or not! It will also be a great coping mechanism.

Other things you are struggling with…just let them all go. None of them matter. That boy- he will be quite insignificant. Calculus- also insignificant . I assure you that you will never need to know when Train A passes Train B at whatever speeds because you will end up flying everywhere. You will never get busted skipping physics. You will be shocked to know what your parents are actually aware of just as they will be shocked at what they missed. No sweetheart, I’m not going to tell you which because I gotta keep you on your game.

So what do I tell you here from the future that would be of value?

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This. This picture. Fourth from the right.

In about 10 seconds after this is taken, you are going to do something that will get you in trouble and that you will beat yourself up about.

In the original choreography, everyone moves to a straight line and does a stag. Because it is such a hard jump and not everyone can do it, they change it to a straight jump. But you will be pumped full of adrenaline and nerves and will execute a full, technically beautiful stag all by yourself. Your coach and team will be upset because you were the only one who did it. You will be upset because you feel like you ruined the dance.

Sweetie, I’ve seen the video. I’ve seen that perfect jump. I’ve seen your big smile. I’m not going to tell you about any of your physical struggles that will start in 10 years…yes, you read that correctly. But I will tell you this: live that moment and soak up that perfect jump.

Don’t be hard on yourself for that.

Be hard on yourself for the bangs.

Oh Christmas Tree, Oh Christmas Tree

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Your branches were so mangy.
Oh Christmas Tree, Oh Christmas Tree,
Your lights made me murdery.

So I threw you out last May when I moved.

Whoopsie. Not the best way to start a post where I’m going to talk about how I’m not a Grinch this year.

But I think every RA patient out there will agree that our diagnosis means we deserve easier things. Like pre-lit trees. Where you don’t have to stretch out miles of lights to find that one dang busted bulb that requires prying with dodgy fingers. Unfortunately, I won’t pay more than $10 for said pre-lit tree I deserve so I won’t own one until the after sales.

And one last rant. Eggnog. Disgusting. Looks like snot. At what point is this a good idea? I like my eggs thoroughly scrambled- would you put vodka and milk on scrambled eggs? Right! So what makes it more appetizing mixed with raw ones? Salmonella nog.

Ok, that’s done now.

It’s no great secret that I struggle at the holidays. It hasn’t always been that way though. Since I’ve expended energy on several blog posts in past years bemoaning Christmas, I thought I’d change it up and give a list of what I’m looking forward to this year.

1. Shitter’s full. (International readers, just curious…does Christmas Vacation have a cult following in your country?)

2. My family always finds some crazy gadget I’ve never even heard of to help me.

3. Truly appreciating Tiny Tim. I feel like I can understand that spirit much more clearly.

4. Transiberian Orchestra.

5. Pumpkin spice coffee and candy cane Hershey kisses.

6. PIE! PECAN! PUMPKIN! Also known as Spirit DMARD’s, right? ;)

7. Christmas cards, even the ones with pretentiously positive family letters.You know who you are…

8. Seeing The Nutcracker and remembering the times I danced to that music in the past. Bittersweet.

9. Making fun of people lip syncing in nationally televised parades. Seriously… PLEASE act like you’re singing your heart out in highly modulated auto tune. It amuses me.

10. Spending time with dear family and friends and knowing that even though sometimes you too make me murdery, you have my back without question or request.

And to keep all the positive balanced with sarcasm, I may compose a rant on holiday vehicle decoration titled ‘Just Say No.’

Take It Back Tuesday: The 3rd!

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Alright. I’ve had like two do overs this week with this blog’o’mine.

First, I wrote a fun post about Christmas and instead of publishing it, I somehow left it in draft. And now I don’t like it. So, much like Kanye, Imma let you finish…but first Imma pour a glass of wine, a glass of eggnog, grab a big handful of candy cane Hershey kisses and do some rewrites. Kidding about the eggnog, when you finally get to see my holiday post, you will learn that I don’t drink substances that resemble snot.

Second, I was all geared up to write about how I’m taking back cooking. I’ve been spending a lot of time hunting down cheap yet locally sourced foods and making good smelling, fantastic tasting, immune system building dishes that I’ve really taken a lot of pride in both eating and allowing myself the time to enjoy the process. So what happened here?

Well. Let’s just say that there’s a well known foodie blogger whose blog I frequent and quite serendipitously, our paths crossed recently. She is not any sort of disease blogger so don’t point fingers. And, knowing I shouldn’t type this but also knowing I didn’t identify myself through my blog or as a reader, let’s just say that said meeting made an impression.

So now I don’t want to write about that either.

So tonight I am going back to a basic. I was discussing this earlier today and I think it is quite apropos for where I am right now.

I have absolutely no control over the RA diagnosis but I have complete control over my reaction.

I feel like I’ve done a good job at channeling my reaction into work with the ACR, AF, and I LOVE my work with IAAM. I also love blogging and getting to know my readers. But what I’ve realized…and I’m sure my last post is reflecting this too…is that I’ve thrown myself into ACTION to control my reaction and somewhat lost sight of me.

In a conversation with a close friend recently, I shared some feelings of confusion with her and her response, after a pause, was ‘You realize what you’re resisting is being happy, right?’

Shocked.

I’d never thought about it but part of the reaction we can and need tocontrol is allowing ourselves to be happy.

I do understand how we lose sight. You wrap your brain around a diagnosis, medications, family and friend reactions. Once you get those settled and decide you want to ‘make a difference,’ your disease becomes about that. In addition, I almost feel guilty admitting to being happy while living with RA.

I think as we learn our new identities as autoimmune arthritis patients, we are in some ways expected to take on the stereotype of the long suffering martyr patient. I wonder if we, as patients who don’t look sick, feel even more threatened by misunderstanding if we look and act and live our lives as HAPPY people? You say you hurt and you say you’re on this serious medicine but you’re smiling and I think you mean it?

Hence the guilt.

I think that’s terribly unfair. RA gets enough of me. Money, time, money, health, money, pain, and did I mention money?

I realize that being happy doesn’t happen overnight but as of now, I’m taking back the control to allow myself that if I so desire. And I do!

What do you think? Do you feel like me and feel guilt when you should be happy? Or am I just especially tangled for an RA patient?

Don’t answer that second part.

Take It Back Tuesday, Part Deux

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Ever since I was diagnosed with RA, I have held myself to a much higher standard as far as pushing myself to DO EVERYTHING YOU CAN, even if you don’t want to, even if you just plain shouldn’t.

And if I fail to cram a million things in, I feel just that…failure.

Trying to live an overcommitted life while also sharing the life with dang RA…I set myself up for that a lot.

The funny part is that prior to diagnosis, if I didn’t have time or didn’t want to do something or just simply found a better option, I didn’t give a rats ass about bailing. I remember thinking ‘screw the spin class. I work very hard. I deserve a night on the couch.’

I have various theories as to why I now am very concerned about multiple little rat booties but those don’t matter.

Because tonight I blew off the gym to go to the gym. More specifically, I blew off the whole working out part and instead plopped my bathing suit clad rear in the hot tub and then the steam room and then back to the hot tub. Taking away feelings of failure one fantastic jet on my back at a time!

If I could somehow find a way to navigate my day from a tub of hot jetted water, my joints would be happy, happy, happy! Alas, that could make sales presentations interesting.

Normally, I’d come home and be disappointed in myself but when I really thought about it, I really see no point. How am I failing when I’ve done something good for myself? Sure, it wasn’t cardio persay but it is still healthy and now I feel great!

Take It Back Tuesday: I’m taking back realistic expectations and the ability to make a healthy compromise.

What are you taking back?

Take It Back Tuesday!

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In honor of Tuesday and to celebrate the excitement and sense of accomplishment we feel when we can ‘take things back’ from RA, I’m going to start writing about the things both large and small that I’m taking back into my control. I fully realize that there may be days where my biggest accomplishment may be just making it through the day but hey… let’s put it out there because it is what it is!

Without further adieu… my first Take It Back Tuesday is…I finally hung pictures and curtains in my bedroom.

Six months after I move in.

For six months, I’ve stood there looking at them lined up against the wall and thought of a variety of reasonable excuses. I’m too tired. I don’t feel comfortable on a ladder. I don’t feel comfortable on a ladder with a drill and hammer. It hurts my wrists to use a screwdriver repetitively.

You know the drill. See what I did there? Ha!

But my bedroom didn’t feel like home.

And you know what…after all those excuses, the ladder was fine, the tools weren’t heavy, the wrists are fine, and my room is almost the relaxing space I need it to be.

I always give myself less credit than i should with things such as this.

What are you taking back?