Tag Archives: RA Reflections

It’s almost that time again….

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So, every year from Thanksgiving on, I focus on how much fun I’ve had that year, how sad I am to leave that year, and a very specific list of things I want to accomplish in the upcoming year. 

This time last year, I had just predicted (accurately I might add) my company was going to tank and had decided that I wanted to move.  I’ll  be honest a year later that the move was more about a desperately needed change of scenery to get my head on straight again than a job.  Having to simultaneously deal with a chronic diagnosis, the shock of the diagnosis, the suicide of a loved one, the fallout/litigation from the suicide, a brother’s deployment, worrying about how said brother was handling said family member’s suicide (happened a month after he returned), friends that were continually putting me in bad situations, and a few douchebags thrown in the mix…is a lot.  And I was being pulled in about 400 different directions which was allowing me to quite successfully avoid dealing with any of them.  I was pretty much just going through the motions.  

My goals for 2009?

1. Get out of Greenville.

2. Get healthy- physically and emotionally.

3.  Eliminate all bitchy and douchey people.

And well…mission accomplished.

 It hasn’t necessarily been pretty. And that’s putting it nicely.  Ironically, in spite of the physical, the hardest part has been #3.  I wound up in tears on my birthday because of someone and  (3 weeks ago!) was called” a spoiled little girl who uses guys to fill a void and feed an ego.”   LOL. Taking a step back now, I wonder why in the world I was even friends with several people in the first place and oh dear God, isn’t the saying “you’re only as good as the company you keep?”  

So, walking through Target this morning and seeing Christmas decorations threw me back into thinking about 2009 and what I want from 2010.  

2009 has sucked.  Totally. I’m not sad to see it leave. Sure, I’ve had some moments of pure fun and sure, I accomplished my goals and sure, I have totally set myself up both physically and emotionally to move on with my life, RA and all, better than I ever could have in Greenville with the circus down there.  But getting to that place and finally dealing with all that crap has been extraordinarily painful.  But painful in a good way….it needed to happen because I feared it would come down to deal with it now or massively implode at some point in the future.

I’m at a point where I’m ok with myself and I’m ok with the things that have happened to me. But I still feel a little breakable and I’m not willing to put myself in any situation that involves emotional stress or drama.

So rather than put pressure on myself with a very specific set of goals for 2010 that I will continually beat myself up about, I only want this: to finally be able to move on from ALL above situations and to finally feel like myself again.

The answer is YES.

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Normally, I get a huge kick out of reading the search terms that bring people to my blog.  Some of them are absolutely hilarious and  strangely inappropriate.  But today, I wish I had contact info for the one I just saw.

“Does RA ever get better?”

Yes, my friend, it does.  

It is such a shock to get a diagnosis like that.  I could expound on that forever but you all know exactly what I’m talking about.  

My first reaction to it was deny, deny, deny.  And then take a long boat ride down my favorite river in Egypt.  And then more denying!  

But eventually, once the shock wears off and the treatments kick in, you get some relief.  And once you start to get the physical relief, you can begin to search out the emotional relief.  

It is entirely possible to live a very fun and full life with rheumatoid arthritis.

So yes, it does get better.  Virtual hug!

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.