Tag Archives: RA Reflections

A picture speaks a thousand words…

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So, out of curiosity, what goes through your mind when you see this picture?

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On the surface, I bet you would say 5 pretty girls who had dinner, drinks and went dancing to celebrate a 30th birthday.  And you would be correct.

But what do you think if I tell you this picture also illustrates the following:

  • 1 case of Rheumatoid Arthritis.
  • 1 case of Celiac Disease.
  • 1 case of ADHD.
  • 1 who has a good friend with bipolar disorder.
  • 2 who are close to people  with PTSD.
  • 3 who have close family members who have severe depression.
  • 2 who have lost close family members struggling with depression to suicide.

Bet you weren’t expecting that.  

Is this some sort of invisible illness support group?  Nope, although we did go to a martini bar named Therapy.  I hope you’re appreciating that little nugget of irony like I did.

This is merely a cross section of life.  And I imagine that this would be fairly representative of all of us.  Just because you can’t see these illnesses on our faces or bodies doesn’t mean that they don’t exist.  In fact, I’d wager that because you can’t see them, it makes  existence harder for those who suffer from them because there is no sympathy or understanding because there is no cast or stitches.  Nothing visual to suggest anything is out of the norm.

On the flip side, because you can’t see these illnesses, you can hide them and only disclose them to people you feel comfortable with.  

And it still lets you take great pictures with your friends in bars named Therapy.

Aren’t they pretty? :)

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.

A little Labor Day post on my labors

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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

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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.

What does RA feel like?

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This was a question posed to me by one of my guy friends recently and one that I don’t think I’ve ever talked about here. I will go ahead and  preface my answer with the fact that I prefer odd similes and metaphors to explain RA rather than to admit out loud that my body gets bored with the hobbies I so carefully select for it and prefers to attack itself. Because that is mutiny. On second thought, mutiny IS related to piracy…and I definitely don’t mind the thought of Johnny Depp mucking around in my joints.  Maybe I can develop a new explanation….something to do with my joints being the Black Pearl?  HmmmmmmmAnywho.

My answer: It feels different day to day. On one kind of so-so day, it feels like sumo wrestlers are sitting on my joints. Lots of heavy, dull, throbbing pressure. On other so- so days, it feels like muay thai fighters are pulling on my joints. Lots of sharp pains and sucker punches, no holds barred. On really bad days, it feels like the sumo wrestlers and the muay thai fighters are having a gang fight and at different points, both sides are winning. It feels like, on different sides of each joint affected, a sumo wrestler is bear hugging the muay thai fighter and the muay thai fighter is pulling in all different directions trying to get the sumo dude off of him. On better days, I don’t feel anything except the joint feels more fragile and brittle, like it’s recovering from a really bad sumo/muay thai gang fight. So to sum it up, lots of pulling, pushing, and then just not feeling 100%.  Oh, and in my imagination, the sumo wrestlers are wearing much more than man thongs.  And the muay thai fighters have mohawks. Because that is how I roll.

Out of curiousity, because I’ve never considered this before, what does RA feel like for you guys? Do we all have the same sensations?

New Way RA

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Go on over here and check out New Way RA, a great new resource for those of us who won the auto-immune lottery and for our loved ones.  This is an online talk show hosted by Deborah Norville, whose mother had RA, and features several chats with experts on nutrition, activity, the emotional side of it, and even career coaching.  I’ve seen the DVD and think it does a great job of breaking these things down in layman’s terms…..YAY for good RA PR. :)

Thoughts…

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I’ve been pretty reflective lately about a bunch of things; amongst them, the events and circumstances surrounding my diagnosis, and how I’m just kinda shocked about where I am in my life right now.  Don’t get me wrong- I’m doing good- it’s just if you’d told me ten years ago that today I’d be dealing with all of this, I would never have believed you.  In fact, sometimes I still am shocked and in a lot of ways, I still haven’t really dealt with a lot of the things I feel about my RA.

10 years ago, I was 19.  I was super active and probably too skinny.  I took dance lessons still (ballet and jazz) and I went to the gym to watch the hot guys play basketball.  I was kinda flighty and spacy, emotional and sensitive, and more interested in having fun than much else.  I hadn’t discovered running yet.  I’m pretty sure I thought that those aspects of my personality would still be there today.

10 years later, I’m trying so hard to be active. I have 10 pounds to lose although I’d love to lose 15.  I do lots of run walks.  I want to dance again so badly but I’m not sure if my feet can handle it.  I still go to the gym to watch the hot guys play basketball. Flightiness and spaciness has turned into sarcasm and witty banter.  Overly emotional and overly sensitive- things that would’ve upset me several years ago really hurt me today.  I think that’s actually the worst part.  

Don’t worry- I’m not in a bad time right now.  I’m just trying to process things.  I really miss the Amanda of 10 years ago. Heck, I miss the Amanda of 5 years ago.  I don’t think I’ve ever really stopped to mourn that loss so I guess that’s what I’m trying to do now.

A word with my sponsor…

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Dear God,

I know that everytime lately I talk with you it is to ask for something.  I apologize for our recent conversation in which I used the phrase “f-ing crazy.”  I realize that the use of this word in the context of prayer is entirely inappropriate; in my defense, I was trying to emphasize- I think we all agree that there is a different level of wack associated with “f-ing crazy” rather than just plain old normal “crazy.”  I digress.

I have a small bone to pick with you.  Did you really have to give me RA AND chronic klutziness to deal with simultaneously?  I realize you have a great sense of humor as evidenced by the platypus and by Kate Gosselin’s reverse mullet. (Well done.)  But would it  be possible to give me strength, balance, or at the very least good sense to realize that walking down a wet, grassy incline in heels is a VERY.BAD.IDEA?  Can’t a girl catch a break?  No, scratch that.  I don’t feel comfortable using the word “break” in context of falling and RA.  Sheesh.

Also, I apologize for using the F word again when my butt hit the concrete.  But I am very appreciative that I only have a bruise to show for it.  

That’s all for now. :)

Best Day Ever!

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Saturday was a good day.  No, scratch that.  Saturday was an incredible day.  Since I’m moving, my friend and I met up at lunchtime with cameras and spent the whole day taking pictures of the places around town that mean something to me, the places that I’m going to miss the most.  If you’ve never done that, and you’re looking for something interesting and cheap to do, I highly suggest it.    An added bonus?  The walking- exercising joints that are a little sore right now without completely destroying them.  It was very nice.2333

On the campus of my alma mater, Furman University.

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The building I used to work in.

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My thoughts on that former employer.  

2429The entrance to my favorite restaurant/bar.  Not exactly RA friendly!

2403My favorite place in town, and the best pic in the bunch!  Behind me are various art galleries that are a blast to peruse.

2341My reaction immediately after my realtor calls me to tell me that I’ve just gotten a FULL PRICE OFFER on my house.  Woo hoo!  I’m a NC girl again!!!!!