Tag Archives: Awareness

ARE YOU READY FOR SOME FOOTBALL?

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Last night, I went to the Panthers/Vikings game here in Charlotte.  I went, a little unenthusiastically because, let’s face it- we suck this year.  But I’ve been looking forward to this game all season mainly because I’ve always been a Brett Favre fan and didn’t want to miss a chance to see him play in person.  

Despite the fact that it was FREEZING and that I was wearing so many clothes that I felt like Ralphie’s little brother walking to school in A Christmas Story, I had so much fun because LAST NIGHT WE DIDN’T SUCK.  Shocker, right?!?  Actually, I think the newspaper this morning used the verbage “stunner.”  Whatever.  Same thing.

Anyway, I could go on and on about the morbidly obese Vikings fans who sat near us replete with Viking helmets and attached braids (B- list stripper grade hair extensions if you’re dying to know my opinion) or how well my strategy of keeping warm through numerous hot chocolates laced with obscene amounts of Bailey’s worked or how I learned that my finger joints that are effected apparently don’t like being  constricted with glove liners, gloves and a handwarmer shoved in.  But I won’t.  :)

Nor will I post the many pictures I took on my phone.  I got a really good one of Brett (we had REALLY good seats).  

But I wish my hands that were pissed at me would’ve cooperated fast enough to get the one picture on my phone that I was dying to take.  You see, during one of the breaks, there was a huge ad for the Arthritis Foundation.  HUGE.  ON SUNDAY NIGHT FOOTBALL!  I  drunkenly totally geeked out seeing it on the jumbotron!!!  But maneuvering my willfully defiant and heavily layered hands to unzip my side pocket, pull out my phone, unlock my key guard…..it just didn’t happen.

Ok, so I realize that the ad itself was tied to a corporate sponsor and only included a small blurb on what arthritis is with no mention of Rheumatoid Arthritis and that it  probably was only shown in the stadium but how cool is that!!!

I’ll take it however we can get it.  It’s a good place to start.

Massage Therapy and a breath of fresh air!

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I will admit it: I am addicted.  

It calms me, it soothes me, it relaxes the muscles of my back and neck which bother me, it stimulates an immune response which helps me manage my RA.  I crave time where I am forced to do nothing but chill.  And this takes the cake.

I’ve been to probably 10 different therapists over the years, most of them good, some of them atrocious.  A memorable one would be the guy who chuckled when he had me roll over and got a glimpse of boob.  And proceeded to stare.  Thank you, douchebag- because of you and how uncomfortable you made me, I now only go to female masseuses.  Have fun at the club tonight by yourself with your balding yet spiked hair and Ed Hardy shirt. I bet you like techno music and use cheesy pickup lines.  

I digress.

I found my current one by chance.  A coworker had a gift certificate that he wasn’t going to use.  “I don’t like being touched and I have a problem laying naked on a table in front of a stranger.”  To which I said “I do and I don’t.”  I called, made an appointment and by luck of the schedule, got this one.

Seriously, she is the best one ever.  Not because of her bodywork (which is great) but because of her interest in auto-immune disorders (family member with Webener’s who is on Prednisone and Methotrexate) and the fact that she’s currently studying naturopathic medicine.  

I admit, if you really think about it, that it’s a little weird meeting someone for the first time and five minutes later, you’re laying there with no clothes on.  Somewhat like a frat party?  (Sorry, Mom- totally kidding.)  It’s even a little more intimidating when you have to explain to them that “hey, I have this thing and these spots that if you aren’t careful, you could really hurt me.”  I’m accustomed to having to explain what and where every time I go to the same people.  I’m also very hesitant to let them touch the spots.  In fact, until this one, I’ve never let anyone touch my affected joints.

So, imagine my surprise on my second appointment when she asked to see my hands before we started.  She looked at them and gingerly touched them.  “Ok, you’re a little swollen today.  I just wanted to check before.  How are your feet?”  Wow.  I seriously think I hugged her.

It’s made a huge difference in how I feel.  I’m getting massages weekly like my doctor recommended for the first time ever with no fear of injury.  She is more in tune with my RA than my rheumy is.  She has picked up on the spots in my wrists that bother me sometimes, which I’ve never mentioned, and this week made me happy by saying “Your fingers really look much less swollen lately.”  I had noticed it too but hadn’t said anything to anyone because I thought it was just me being hopeful.

She’s given me advice on supplements-where to buy and brands to try, recommended a yoga teacher who can help me modify things when I need to, and is encouraging me to try acupuncture.  She’s familiar with my medications and is very empathetic on their side effects.  We talk about diet and foods that are by nature inflammatory.  

 I’ve had better conversations with her than I have with my doctors.  And in some cases, more well-informed conversations.  I really believe in treating the whole person, sometimes I feel that my doctors don’t.

I swear I had a point here.  I’m excited.  I’ve always wanted to approach my treatment as a partnership.  I only want people to understand where I’m coming from and where I want to go.  I want to get a massage as often as my budget allows.  I only want my goodies ogled in an appropriate venue. I want to have clinical conversations about my rheumatoid arthritis that don’t make me feel like crying.  And for now, I have that.

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!

H1N1 Vaccine

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I laugh that I can keep up with the world by simply looking at my friends’ Facebook status updates.  A few recent favorites include “Jeff intercepted a memo reminding Delhomme that he plays for the Panthers” and “Megan is beginning week 3 of (f)unemployment.”  

Today, I noticed probably 8 updates about the H1N1 vaccine.  They ranged from the funny (Jack SAYS GET VACCINATED DAMMIT) to the mundane (Rebecca is going to her 24 week OB appt and getting her H1N1 shot).  It is the latter which really upset me.  I am upset because, within 20 minutes, she had 4 nasty comments from people berating her for putting her child at risk, implying that she’s a bad mother, and then it quickly spiraled into a discussion about vaccinating children.  No, discussion is not the term. Virtual flogging is probably more appropriate.  It was cruel and I can’t imagine how she felt coming home from her appointment to read that.

Then I thought about some of the reactions I’ve had from people without RA to  the medications I’ve taken.  My favorite was when someone asked me what I took and then, in front of people, shook his head and said “poisons!”

To medicate or not to medicate: that is the loaded rheumatoid arthritis question.  And a very personal one at that.

I will be the first to say that I’ve been on some pretty hardcore medication for over 3 years.  I have also tried going med free and using alternatives.  At the end of the day, I simply have more success on the medication.

Do I read RA blogs that advocate little to no medication?  Yes.  Do I find value in them?  Absolutely. To be completely honest,  I’m quite jealous of people who are successfully med free.  But after reading the research on the long term effects of uncontrolled rheumatoid arthritis (uncontrolled by meds OR uncontrolled by alternatives),  I have decided that, for me and me alone, I need to take the medication and supplement with alternatives.  

Same concept with the H1N1 vaccine. For me (and obviously for my friend), benefits outweigh risks.  I’m not telling anyone what to do (although I have made the blanket statement at work that anyone who doesn’t get the vaccine, comes to work sick and gives it to me, if it kills me, I will come back and haunt you.  Poltergeist style. I say this even though I am getting it.  I just have luck like that.)  

I will say that I think everyone in the at risk groups should seriously consider getting the H1N1 vaccine.  That’s my opinion.  Doesn’t mean it’s right. If you choose not to, that’s your decision and I respect that we are all different people.  

But, at the risk of hateful comments, I ask that you make an informed decision.  That’s all. RA Guy has some great links explaining more.

An Open Letter to my Future Rheumatologist

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Dear Dr. (insert your name here),

First and foremost, let me tell you that I’d so much rather be shoe shopping than rheumatologist shopping.  To put things in perspective, I’ve never gone shoe shopping and left with 5 vials less blood than I came with.  Rheumatologist shopping…different story.

I’m really frustrated.

I think I’m a pretty good patient.  I like to understand and learn as much as I can about my disease state, what exactly is going on in each joint affected, why certain bloodwork is ordered, how my medications work, different options for treatment etc so I can have informed discussions with you.  I do not believe in blind faith as far as medical care is concerned, especially MY medical care.  

In return, I do ask a few things of you.  I expect you to listen to my medical history, understand my goals, respect my concerns, and work with me to find a mutually agreed upon plan.  Specifically, I am open to resuming methotrexate if you are open to me not resuming it.  I’m not trying to tell you how to do your job or play games.  But I am telling you that I’ve had minimal success on it and I would like for you to look at my medical history, think about it, and see if you can come up with a better idea.  That’s all.  If you think it through and still think you’d like me to try it, sure, I’m game. I do realize that practicing medicine is exactly that: practicing.  

But I do ask that you practice- don’t just give me what you give all your other patients.

I don’t think I’m asking the world here and this is not just about methotrexate, although that is a sticking point with me.  I would just like your time and thoughtfulness before you stick me on any strong medication or other uncomfortable course of treatment that (let’s be honest here) you’ve probably never taken yourself and don’t have firsthand experience of trying to function with the side effects of in your daily life.

Here’s to hoping that the next one of you is better!

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?

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.