The answer is YES.

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

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.

Traveling with RA: Success! Finally!

Traveling with RA can be a pretty unpleasant experience for me. Once, I went to the beach on methotrexate and got so nauseous at dinner that I had to leave.  I got sick and cried myself to sleep.  Then I went to the mountains and was so stiff and uncomfortable with the cold and snow that I ended up leaving early.  Again, tears.  It’s just so unfair that I can’t always enjoy the same things that everyone else gets to.  Sometimes I even dread it.

Last weekend, I went to Baltimore for the wedding of one of my favorite people and to hang out with a lot of my other favorite people.  I was absolutely determined that RA was not going to get the better of me.  And…it was an absolute blast!  Someone told me earlier this week that “everybody just looks so happy in the pictures” and they are right- and that was the whole weekend, not just for pictures.  I could tell you story after story about how much each of these ladies means to me….but that’s a whole separate post about support systems. They mean the world to me. Sorry I’m gushing but seriously, they rock.  

 

I slept well both nights- which is unusual for me in a strange bed.  I was able to still be comfortable even with pouring down rain and cold- I was really stiff Sunday night but that could’ve been from sleeping on the plane.  I haven’t restarted my methotrexate yet (did this on purpose so I could have alcohol) so I didn’t have much trouble eating.  Dancing?  No sweat.  Flip flops in my purse!  Scariest part of the weekend- walking down a steep hill in spike hills in the pouring down rain.  I had visions of my butt hitting the cold, wet concrete and somehow hurting my hands….but I didn’t.  I will admit that I did hit a little bit of a wall on Saturday night after the reception- but I think someone without RA would too after flying, staying up late, dancing like crazy, and just having a lot of active fun.  And it wasn’t the bone crushing mental fog inducing fatigue I usually experience but more of a I MUST EITHER SIT DOWN IMMEDIATELY OR GO TO BED IMMEDIATELY.  

Sure, Monday was hard.  I got up late and went to bed early.  But this is the most successful trip I’ve had since being diagnosed.  No crazy “I just don’t have the energy to get out of bed but did anyway and spent the rest of the day in a hateful mood”, no pain, no vomiting, no having to skip out on things because I just don’t feel great.  Whew!

What did I do differently?  I actually planned for all of these things to happen. Seriously- I convinced myself that I was going to feel like crap.  I started taking Airborne, Vitamin C, and Zinc supplements several days before.  I even considered getting a B-12 shot the day before I left.  (I didn’t though- didn’t have time.  But may in the future.)  The night before I left, I went ahead and started taking Aleve.  I had Thermacare heat packs, Biofreeze, and Prednisone with me.  I don’t know if it was the whole immune system jolt I gave myself or the whole “if you wash your car, it’s going to rain” thing that seems to be true of my life, but someway somehow I was able to finally enjoy myself in spite of RA.

Now, if I could only see my peeps more often.  Hint, hint.

An Open Letter to my Future Rheumatologist

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!

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?

On a serious note

Today is my uncle’s third deathniversary.

 Of all my extended family, my Uncle B and I were the closest.  He was incredibly sensitive, kind, hysterically funny and very intuitive when it came to feelings of others, particularly mine.  My brother spent a year in Iraq and B remains the only person I’ve ever talked to about it in depth.  He knew how scared I was, how badly I was handling it, and some of the thoughts I had about it that really bothered me. He went out of his way to check on me with phone calls, emails or funny forwards everyday of his deployment.  My parents didn’t even do that; it meant the world to me.

 Three years and two weeks ago, unbeknownst to most of my family, he moved in with my grandmother while trying to work out some extreme marital difficulties.  Believe me when I say most of us had no idea.  I still have emails from those weeks where NOTHING is off.  No weird tone, no signs of depression, no mention of any problems he was experiencing with his wife.

 Three years ago this morning, my grandmother went to water aerobics.  We have put together this much:  around 11:10, B called his attorney and got  devastating news.  Around 11:35, another uncle had a missed call. My grandmother returned home later and found B in her garage.  Self inflicted gunshot.

What happened after that I hope that none of you ever experience.  Reactions that ran the emotional gamet.  Mine was extreme rage.  Not at my uncle, mind you, but at his wife.  Anger so pervasive that I would lay in bed at night unable to sleep and so overwhelming that I had a hard time breathing.  My dad wouldn’t allow me to attend the funeral because I couldn’t promise I wouldn’t make a scene if his wife showed up.  And relationships with her torn beyond repair to this day: imagine two separate obituaries and two separate funerals.  In the same town.  Because when you are trying to keep a suicide quiet, that is a sure fire way to fly under the radar, right?

 Imagine what that did to my RA.   I was newly diagnosed and newly on meds.  My symptoms went from a 4/10 to an 9/10 overnight. Anxiety and sleep medications interfered with the efficacy of the RA meds.  And I was in no way, shape or form even pretending to try to take care of myself.

 I guess what I want to say is that I know as a part of our experience, we do experience depression and anxiety while we’re trying to manage our symptoms. I hope we all know that experiencing it and seeking help for it is not a sign of weakness.  Actually, I think it’s an extraordinary show of strength.  I’ve done it and I hope if you are ever in that boat that you do too.  I was pleased to learn that there are counselors specializing in pretty much every area- I’ve been to both grief counseling and one that specializes in chronic illness.   Well worth the investment!

 We’re all strong people here and we’re doing all we can do to live with our respective illnesses.  I think it’s so important that we’ve found each other and continue to talk and support each other.  Knowing that you are not alone is a huge thing.

I wish everyone had that.  I wish my uncle had that.

 I still look for him at holidays and family functions.  From what I hear, that will never go away.  I still cry about it if I think about it too long and I will probably never talk to my “aunt” again, especially since she hasn’t allowed my grandmother to see my uncle’s young son since his death.  I think that’s shittier than shitty.  I  choose to think about him everytime I hear an AC/DC song- I did that because it’s one thing that I don’t associate with the pain of losing him.  And yes, there’s a GREAT story behind that. I miss him and love him like crazy and am incredibly thankful for the limited time that I had with him. 

 And I’m very thankful for all of you.

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!

A picture speaks a thousand words…

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

 

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

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.