The 4-1-1

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

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.  

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?

LOL

One of my favorite parts of this whole blog thing is seeing the queries people enter that bring it up in search results.

Today I had a good chuckle over this:

Lazy people on disability.

Ha.

NOT IT!

Get Ready for Invisible Illness Week: Beginning Sept 14th

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.

A little Labor Day post on my labors

If I’d known ten years ago that I would have rheumatoid arthritis today, oh the things I would do!  I would spend a small fortune on couture 5 inch hooker heels and prance around in them EVERYDAY until I started having problems.  Going to the carwash?  Awesome- silver 4 inch Loubatin’s just to make a spectacle.  Church?  How about some conservative 5 inch black polka dotted Jimmy Choo’s?  Going dancing with friends?  Prada, Prada, Prada! Doesn’t that sound magnificent?!? Yes, these are the things that this 29 year old RA patient who has, at times, been accused of being slightly vain fantasizes about.

 Then there are things that I chose for myself before this whole RA thing that I’m clinging to like a madwoman.  Things that are very important and self-defining; things that I can’t just let go of like a pair of shoes.  Things that if RA messes with, I say “sorry, dude, these are non-negotiable.”  Running would be one of these- I still do very infrequently- but relish the moments when I can.  My job would be another one of these things.

I love that my job is very fast-paced, stressful, and completely the result of MY efforts.  In today’s environment, I have to triple my activities to yield 50% of what I’ve produced in years past.  To which I say:  Awesome. Bring it.  Rock on, Type A.

I do not love that my RA, when in flare mode, sometimes does not work well with a job that is very fast-paced, stressful, and completely reliant on MY efforts.  In a flare environment which is generally twice a year, I have to sometimes cut back on my activities which (somewhat embarassingly) still yields 50% of what I’ve produced in years past. To which I say: Suck it, you traitor. Leave me alone.

I know, I know.  You can say it.   It’s weird as heck that I am more ok with the whole financial debaucle of late making me have to work harder than I am with the whole RA/flare debaucle of late making me have to chill out some.  

If I’d known ten years ago about my RA, would I have chosen the same career path?  Most likely, yes. But in all honesty, IF I’d known, I probably would’ve tried to go to med school.  I feel like a part time rheumatologist most of the time anyway, why not get some initials to match?

The worst response EVER

I’ve been talking more and more to my friends about my RA- they’re awesome and want to know as much as I’m willing to share which is somewhat of a shock to me.  Did I say already that they’re awesome?  Anyways, one of them asked me how people react when they find out about my diagnosis and I was reminded of this gem that I don’t think I’ve told you guys about.

Allow me to first give you some contextual information.  I may or may not have been attending a lunch meeting about volunteering for an organization that may or may not  be arthritis focused.  I may or may not have volunteered through email to help organize a silent auction.  I may or may not have been nervous about attending because this may or may not have been the first time I had really admitted to anyone about my RA. (After a year and a half of being pissed off at the world, I thought it was time to try to channel my energy into something positive.) And this person’s response may or may not be the sole reason why I may or may not have done a damn thing.  Let’s just call it the perfect storm, shall we?

Meeting Organizer:  Let’s go around, say our names, where we work, and our connection to the organization.

Amanda:  Hi, I’m Amanda, I’m in outside sales, and I’m a Rheumatoid Arthritis patient.

Older Lady Next To Me:  (Audible gasp)  AND YOU WORK???

Voice in my Head:  No crying, no cussing, no crying, no cussing.  

I was very much taken aback to have such an uninformed response in what should be a very well informed audience.  I still want to kick myself for simply nodding that yes, I do indeed work rather than giving a meatier answer that talked about meds, age, diet, working with my doctor to achieve goals and the fact that because I define myself so heavily by professional success, I would be in a very bad place if I couldn’t work.

I’m such a nerd that I really did go home and create a 30 second “elevator speech” in the offhand chance I should ever encounter said situation again.

Feeling good…I think

I’m afraid to say definitely because the past few months have been like being on a roller coaster with a stomach full of candy apples, corn dogs, and blue slushy.  Blllleeeeecccchhh.  Don’t you appreciate my visuals?

I like my job.  It’s nice to have a job where I don’t have to manage anyone, have measurable goals that don’t change by the hour, and don’t wonder on my drive in if I’m going to get there to find the doors chained shut. 

I love my condo.  It’s in an old neighborhood- very Gone With The Wind esque with gigantic gracious trees, old massive houses, and (what I’m most excited about) A PARK that I can walk to in less than 5 minutes that has free outdoor concerts several nights a week.  I do not love having to fit a 3 bedroom house into a 2 bedroom condo.  But I do love the $500 I’ve made on Craigslist in the past 2 weeks.

My RA is doing better.  I’ve spent the past few months feeling like I was getting ready to flare and then nothing would come of it.  And then feeling like I was getting ready to flare and then nothing would come of it.  Rinse and repeat. I still feel a little bit of it but not as badl.  I live next door to a friend from college who has celiac disease and she’s teaching me about gluten free diets.  I’m thinking about giving it a whirl but probably won’t.  This girl loves her carbs!  My friend is also super into yoga and I’m probably going to try that, if I can find a class that isn’t competitive.  The last class I went to felt that way so that’s why I haven’t gone back.

 I’m a little worried because my new health insurance doesn’t kick in until Sept 1st and I have exactly enough Humira to get through as long as I stick to bi-weekly.  Knock on wood please!

All in all, off to a good start.  I think.

A Little Self Conscious

So, I know I’ve talked about how I wait with guys to mention RA until either it comes up naturally or I decide they’re worthy of knowing.  But, until now, unless you’re dating me, I’m actually very open with my RA because why not, you know?  

A couple years ago, the company I worked for prior to the job I just left was one of those rah, rah, rah, we’re the best and if you leave, you might as well kiss any career aspirations goodbye because the only job you’ll be able to get will involve a pole, some lucite heels, and lots of hand sanitizer.  So, you can imagine what happened when I left because I (gasp) got a better job….they trashed the hell out of me.  I heard from a friend that still worked there that it was said that I quit because I had personal problems, because I had a failed relationship with a coworker and couldn’t stand working near him, and because I was a pill popper.  Let me give you the short version: my brother was in Iraq (personal problems), at the company Christmas party, I shoved a male coworker because he kept biting my neck and trying to grope me under the table (failed relationship), and I always have Aleve on me due to RA (pill popping).  Is anyone else reminded of a really mean-spirited game of telephone?  

The job I had after (the one I have just left, hope this isn’t too confusing) had that one douchebag that continually called me “Gimpy” and thought it was hysterically funny.  Now let me give you a great mental picture of the day he finally broke me: me in full professional attire, livid, walking calmly to the kitchen to where I knew his 6 pack of Diet Coke was in the fridge and shaking them all like Polaroid pictures.  It was glorious.  

So that brings me to this job.  I’ve always been really open about it. It doesn’t bother me for anyone to know. But for some reason, I’m just really not comfortable discussing it with these coworkers.  It’s nothing about them- they’re all great- I don’t really know what it is.  I guess I just don’t want people to judge me on it or talk about me because of it.  And it’s making me feel like a liar.  My boss commented on my swollen knuckle the other day.  I just shrugged it off and said I hit it hard when I was moving.  I really don’t like this.  But I feel SOOOO self conscious about it too.

Thoughts?

I’m still here….

Just majorly in transition right now and kinda freaking out.  You see, I’ve been in Greenville for 11 years.  I moved there in 1998 to go to college and just never left.  I knew moving was going to rock my world but I didn’t imagine I would be this on edge.  But I like my job, found a great condo near downtown, and am working on the friend thing.  Right now, I’m feeling pretty alone and lonely.  But all in good time.  First, I have to get the rest of my stuff here.  That happens Saturday.

Oh, and the feline relocation was terrible.  She bit and scratched me getting into the carrier and cried for 2 hours.  Fun, fun!

More coming soon….

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