Tag Archives: Things I'm Thankful For

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!

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!

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.

Three, Tres, Trois!!!

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Something curious has happened to me lately and I’ve been a little nervous to mention it for fear of jinxing myself.  Several months ago, when my health insurance was cancelled by my douchy ex-employer and I had to put myself on a craptastic emergency policy that covered only $100 per month in prescription medication, I made a decision to cut some dosages in half or more so that I could make it until my new insurance with my new job picked up.  You may have noticed in my meds tab that as of April 09 I was taking:

-1 Humira injection/week

-6 methotrexate/ week

-6 sulfazine/day

-4 Aleve/day

-Prednisone prn

Well, to make a long story short, I have been taking the following for the past month and a half:

-3 sulfazine/day

-1 Humira injection/ bi-weeekly

AND I HAVEN’T HAD ANY PROBLEMS.  In fact, my joints just may feel a tiny bit better right now.  Now, this was a decision made out of necessity rather than a consultation with my dr, although I did tell my dr I wouldn’t take the mtx anymore because it tore up my stomach so bad.  The Aleve was cut because I ran out and didn’t have time to go buy more.  When I did finally get more, I realized that I hadn’t taken it in a week.

I CAN’T REMEMBER THE LAST TIME I ONLY TOOK 3 PILLS A DAY!!!!  

I do realize that this could change on RA’s whim but for right now, I’m really excited.

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!!!!!

Sacrifice

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I totally forgot to “publish” a post I wrote for Memorial Day.  So, let’s just all pretend that it’s still Monday for a second.

10 years ago, Memorial Day’s only real significance to me was that my neighborhood pool opened and there was usually a jamming cookout that night. 

But allow me to introduce you to my sweet “little” brother.

Daniel with gun

When 9/11 happened, I was a senior in college and he was a sophomore in college.  While I was watching CNN in tears, he marched down to the Marine Corps recruiter and signed on the dotted line.  He went to boot camp that summer, spent the next year in CA, came home to finish college, and was sent to Iraq the summer after he graduated.  And I couldn’t be prouder of him.

Iraq was horrible for him- he was in a rough area, saw and did some things that he will probably never talk to us about, and has had some problems since coming home.  He can’t count how many times he was thrown from vehicles because they came under fire.  There are several occasions where he’s unsure if he lost consciousness or was just simply stunned after the concussion of an explosion. He actually had an IED land at his feet and not go off.  He was standing next to a good friend when his friend was hit by a sniper and didn’t know for a week if he had survived or not.  (He did, and after many surgeries, likes to tell people that he’s finally watertight again.) He’s doing better now and I feel very blessed to have him home in one piece when so many other families are not that lucky.  If none of you have been through deployments on the family side of it, it’s torture.  The hardest part is that he knows when he’s safe and when he’s not so he knows when to worry.  The family doesn’t….so you just worry 24/7.  And you stop watching the news.  Because they only report on the bad and crying through dinner gets old really fast.  Trust me.

For those of you who don’t know, I started experiencing symptoms of RA a month to the day after I learned about his deployment.  I do not find this coincidental.  I’ve always experienced stress physically rather than emotionally.  Go figure.  Does it suck?  Yes.  Are my achy joints worth having my brother home with us again?  ABSOLUTELY.  I would give up them up all over again if I thought it would keep him safe.

We all sacrifice things along the way.  Sometimes it’s pretty shoes/clothes.  Sometimes it’s an educational opportunity.  Sometimes it’s activities we love because of physical limitations.  But, I know personally, I haven’t chosen to give any of these things up but rather it was something I had to deal with.  To choose to sacrifice a year of your life, of your time with your loved ones, and to embrace the possibility of sacrificing your life….the hugeness of it overwhelms me.   

10 years later, Memorial Day is still a 3 day weekend.  It still gives me pool time when Mother Nature doesn’t hate me.  But, most importantly, it’s a time to say thank you and to say “I recognize that you have given up yourself to do something to protect me and the things that I hold dear.”