Tag Archives: Work

A VERY special request.

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First and foremost, let’s support two of my favorite RA bloggers who have been nominated for Best Patient Blog 2009 over at medgadget!  You can vote once a day- need I say more??? :)  So head on over to medgadget and vote for Rheuma Blog and Infinity- it is.  Gotta help our fellow RA-ers! Note: you can only vote once a day from one computer- to vote for both, I (hypothetically) voted for one on my home computer and the other on my work computer.  Not that I would ever advocate working the system.

Second, it’s been a super busy week and I don’t have much to say.  Well, that’s not true.  I just don’t have time to say it.  But to sum things up, I’m feeling better, work is wild, it was 70 degrees last weekend and this weekend we’re forecasted for lots of snow (what???), and the cat has fleas again.

Hitting the proverbial wall

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This past week marked my 4th diagnosiversary.  January 11, 2006.  Woo hoo.  Did I plan any sort of celebratory event?  Um, no.  I do not celebrate things I’m not excited about.   I noted the date, rolled my eyes, and as best as I could tried to not think about it.  Unfortunately, my RA had different plans…

I’ve been fighting a low grade cold since before Thanksgiving.  I get almost better and then come in contact with someone who reinfects me.  It’s awesome.

I typically have “flares” when I’m either really stressed out or have any other sort of event that my immune system has to battle.  I swear, this RA thing is an absolute DIVA- if my immune system has to divert some of its forces to battle a cold, RA gets its panties in a wad and stages a mutiny.  This happens to me about twice a year.

I don’t have typical flares where all of a sudden my affected joints are completely swollen and locked.  Like I said, my flares are almost exclusively accompanied by a cold or flu. It’s more of a gradual thing and it’s more of a combination of different symptoms- I start to notice more swelling over a period of a few weeks that I can always find excuses for (overuse, increased exercise etc.), I usually start to experience minimal joint pain in joints that typically aren’t affected and then WHAM, my iron and potassium levels bite the big one.  The fallout from the drops in my iron and potassium are actually more incapacitating than the joint pain (now- this was not the case when I was newly diagnosed.)  This is usually followed by a dramatic increase in joint pain. Hence, hitting the proverbial wall.

Monday am, I awoke to increased swelling in my fingers despite having taken methotrexate on Sunday night.   That’s funny….but I’m on cold medicine so maybe it’s not working right.  I still figured nothing was amiss when Monday night I was in bed by 8:30pm.  I must’ve been tired- I don’t even remember falling asleep and I seriously feel like I was drugged.

It took me 45 minutes to get warm again after a client site visit on Tuesday.  I thought I bundled up enough.  Oh well, lunch will warm me up.  I seriously want the biggest rarest hamburger Cracker Barrel can give me.  And lots and lots of those salty steak fries! Those who are familiar with my eating habits would know that this is unusual.  

While driving on the highway back from my visit, I have to suddenly stop and take back roads because I’m so shaky.  I have this weird feeling that I am going to lose control of my car and slide sideways underneath a tractor trailer.  I’m never taking Mucinex again- makes me too jittery.

At a Tuesday evening dinner with my boss, I basically do not participate in any of the conversation because even though she’s talking to me about work, I can’t process any of the things she’s saying. I’m so tired.  All I want to do is go to bed.  This Mucinex and this cold have really knocked me out of whack.  And my feet are starting to hurt.  And my shoulder is sore right now too.  WTF!

On Wednesday morning, my coworker tells me that I look like I could be in Twilight.  Yay- I knew pale would finally come back in.  I know I’m sparkly like Edward.  When I finally looked in the mirror, I realize that I most certainly am NOT sparkly like Edward.  I have bags under my eyes and I’m gray.  I try to adjust my make up to hide this and end up looking like I’m wearing warpaint.  I decide to call it a day and go home and rest.  Afterall, this cold is kicking my ass.  My fingers really hurt, for some reason my left knee is bothering me, I’m bruised, I’m shaky, and I just can’t concentrate worth a damn.  I finally get my first thought that maybe it’s not just the cold at work here…

Wednesday evening, I leave my cave of a bedroom for a much needed haircut.  Hey, I am female- no cold gets in the way of beautification! LIGHTBULB!  EPIPHANY!  BREAKTHROUGH! When my hairdresser asks me what my favorite TV show is and even though I am concentrating intently on every word she’s saying, I DON’T UNDERSTAND THE QUESTION NOR DO I HAVE AN ANSWER.  I nod in agreement that I just love watching The Bachelor (oh, the horror).  To set the record straight, I do not love watching The Bachelor.  I the opposite of love watching The Bachelor. I would rather watch paint dry. Upside down.  Naked.  In Times Square.

All of a sudden, this whole experience is hauntingly familiar.  Extreme fatigue- check.  Bruising- check. Acting like a space cadet on crack. Extreme mental fogginess- check. Strange muscle pain- check.  Increased joint pain- check.  Joint pain in places that usually don’t bother me- check.  

Ohmygod- I’m having a flare.  And I’m anemic.  And I’m hypokalemic.  

When paying at the salon, they ask me if I want to schedule another visit.  I don’t understand a word that they’re saying but tell them ‘no, I have to go to the doctor.’  They stare at me and half-smile when they take my money and watch me walk out the door.  They think I’m crazy.

I locate my iron and potassium supplements I have stashed in my car. (I know, shouldn’t be kept in the car!)  I am able to get into the doctor the next day to verify that I am indeed super low on iron and potassium.  I am told to keep taking the supplements and come back next week for a recheck. Thursday night, I sleep soundly and awake Friday morning well rested yet not feeling drugged.  My joints still hurt though.

Over the weekend, I concentrated on resting.  The joints are still more swollen than normal but the knee has backed off.  The bruises are already fading, I can actually hold coherent conversations.  I still have a cold.

I need to restrategize to figure out a way to pinpoint this earlier.  I also need to figure out how to more consistently take my supplements.  That’s another post though.  Titled: You’re an adult dammit, remember to do this crap!

I’m feeling better.  More than a little bit.  And feeling extremely dumb!

Happy Diagnosiversary, RA.  You are one heck of a skank.

The 4-1-1

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Long time, no write!  

I’ve been busy…working, playing, traveling….living!

Until I can get something meatier up, I will give you a little list of some things going on:

1.  Doctors- I have (finally) found a new primary care doctor here.  I’m picky about all doctors unfortunately but have found a good one who asks the right questions and doesn’t roll his eyes when I keep asking mine.  I am scheduled to see a new rheumatologist tomorrow am….fingers crossed that I like this one as well.

2. Work- I have been swamped.  I don’t post many specifics about work for obvious reasons but I’m in outside sales and my territory was expanded a couple weeks ago.  So I’ve been all over the place trying to strum up business- and actually got a commission check this past month.  (Yay- I haven’t lived on just base salary in years and it SUCKS.)

3. Fun- oh gosh, where to start!  

-I went to the lake for a long weekend for a friends birthday.  It rained the whole time and we ended up playing marathon games of Cranium  in front of the fireplace which sounds super dorky but was hysterical!  

-I went to watch a whitewater kayaking competition here in  Charlotte which was fascinating.  I’d love to try that someday but even without RA, I’m sure I’d end up leading off the 6 pm news (Woman drowns in freak accident etc.) Ha!  

-I went on a ropes course AND a zipline.  Obviously, the ropes course had to be modified some but it wasn’t too bad although my hands hated me for several days after.  The zipline was AWESOME and I’m so mad I don’t have pictures.

-I went back to SC this weekend to see a friend and had a blast.  We were going to a birthday party and, unclear on which house the party was at, had the wonderful experience of walking into the WRONG party in the WRONG house.  We were a street off….oops!

-Next weekend, I’m going to Baltimore for a wedding and am so excited to see my college friends.

So now that you’re all caught up, I’m going to try to not be such a slacker!

An unexpected surprise

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I was stuck on a conference  call the other day at work.  It was supposed to be an in depth discussion of part of what I sell and ended up being the reiteration of a presentation I’ve seen twice.  Yawn.  So, I was doodling on a notepad and on a bored whim, did one of those hand sketches we used to do when we were little.  You know,  the ones you did mainly for Thanksgiving that you would turn into turkey tail feathers and then add big googly eyes. Thrown in some paint in varying shades of reds and oranges and take it home to adorn the frig. 

It seemed like a good way to pass the time. (For the record, my manager was playing on Facebook.)

And when I was done, I was a more than a little intrigued.  

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What intrigued me was that my RA is evident.  But it doesn’t look that bad.  In fact, my worst spot being my left pointer finger, really isn’t that much bigger than the other fingers and could be a whole heck of a lot more misshapen.  And you can’t even pick up on the spots on my thumb and wrist that are troublesome.  

And then I was extremely taken aback by all of this.  Am I marginalizing this whole experience?  Never- it’s had an impact on me so tremendous that I have yet to grasp it.  But I found myself thinking lots of things I hadn’t ever thought about before.  So this RA thing that has invaded my joints and my life….it isn’t all that bad?  This thing that has the ability to make my joints feel like they’re in a vise grip…is barely noticeable at times?   This disease that has in a lot of ways completely changed certain aspects of my life….I’m starting to feel a certain condescension or scoffing towards?  

With a few minor flaws, the big picture is still the same old me.  Same fingernails, same scar on my wrist from that screen door ages ago, same knuckles.  Only big difference is that some of them are swollen. And haven’t I always thought that it’s the flaws that make us interesting? 

I’m used to feeling anger and dislike towards RA.  But feeling condescension and realizing that I am in most ways still the same person, even physically, makes me feel like I have the upper hand.  And I guess I’ve never thought about it from that perspective before.

Who would’ve thought that sketching the outline of my hand would confuse me so much?

Get Ready for Invisible Illness Week: Beginning Sept 14th

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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: May 2005

4. The biggest adjustment I’ve had to make is: slowing down, cutting back on physical activities.

5. Most people assume: that I’m being lame or lazy when I cancel plans or skip the gym. I’m not- it’s because I hurt.

6. The hardest part about mornings are: my body needs sleep. The mornings in flares where I haven’t had enough restorative sleep- waking up in pain doesn’t bode well for the day to come.

7. My favorite medical TV show is: Grey’s Anatomy. No RA reasons- McSteamy reasons.

8. A gadget I couldn’t live without is: my TENS machine.

9. The hardest part about nights are: getting comfortable during a flare.

10. Each day I take __ pills & vitamins. Right now, 3. At my worst, it’s been upwards of 11.

11. Regarding alternative treatments I: have tried a lot of them but unfortunately, my body responds best to traditional medication supplemented by alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: invisible all the way. Being in pain makes you feel very exposed- being able to hide that anything wrong is a comfort.

13. Regarding working and career: hard to balance sometimes but something I could never not do.

14. People would be surprised to know: I’ve learned a lot about myself through having RA.

15. The hardest thing to accept about my new reality has been: accepting that it’s forever. Forever is a very long time.

16. Something I never thought I could do with my illness that I did was: continue running. In 2007, I did 5 5K’s back to back! 

17. The commercials about my illness: generally tick me off. They’re generally off base in every way you can be off base. They feature older people playing tennis. Hello- twenty somethings get this too!

18. Something I really miss doing since I was diagnosed is: the ability to be completely spontaneous.  Not having to plan for rest or take medications with me.

19. It was really hard to have to give up: boot camp classes and high heels.

20. A new hobby I have taken up since my diagnosis is: um, blogging.

21. If I could have one day of feeling normal again I would: go wild.

22. My illness has taught me: not to sweat the small things. We all have struggles. Be sympathetic to everyone- you have no idea what they’re dealing with inside. 

23. Want to know a secret? One thing people say that gets under my skin is: “but you’re so young.”

24. But I love it when people: say “please tell me more.”

25. My favorite motto, scripture, quote that gets me through tough times is: “Pain is temporary, quitting lasts forever.” -Lance Armstrong.

26. When someone is diagnosed I’d like to tell them: it’s going to be ok.

27. Something that has surprised me about living with an illness is: there are ways to modify virtually everything to make it something you can do. 

28. The nicest thing someone did for me when I wasn’t feeling well was: bring my friends to me one time when I felt awful and couldn’t go out to see them. 

29. I’m involved with Invisible Illness Week because: it’s so important that people understand us!

30. The fact that you read this list makes me feel: cared for. I appreciate that you want to know more about something that affects me everyday.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.