Trying and failing to not to take things personally

I limped in to Starbucks this morning to get my usual coffee and it was a bit more crowded than usual.  I was talking to my boss while I ordered and realized at some point after I told her to ‘hold on’ that I was getting some weird looks because I had my bluetooth in and my hair down.  So it totally looked like I was having a conversation with myself…and answering…and telling myself to wait so that I could order. 

What struck me as strange is that I couldn’t care less that it appeared to many people that I was chatting with the voices in my head. Nope, I was more concerned that they saw me limping.

Lately, I’ve been a little down and out on myself.  Having RA sucks and when you over-analyze things like I tend to do, you make life a whole heck of a lot harder for yourself than it should be.  

This past weekend, I went to my cousin’s wedding.  It took place in Virginia, on the banks of the Shenandoah, and she was beyond beautiful.  

Getting there was a challenge.  I’ve been traveling a TON lately and my RA is not as well controlled as I would like it to be.  I feel lousy. I tell you that because I’m hoping it’s because I’m burning the candle at both ends right now and that it will start behaving again. Like immediately.

Anyway, I only agreed to go to this wedding because I understood it to be a 4 hour drive.

It was a 7 hour drive.  One way.

You should probably also know that I refuse to watch wedding shows and romantic comedies.  Thank you recent heartbreaks.  And that I have avoided a lot of family events in recent years for other reasons.  And that I absolutely cannot stand the thought of anyone in my family noticing any sort of symptoms of RA in me or (gasp) commenting on them.  

So when I arrived at the hotel on Saturday, I sent my hot mess of a self to my room and took full advantage of the whirlpool tub.  It helped considerably both with making me more comfortable and calming me down.  

I arrived at the wedding site with my parents and brother.  Even though I was uncomfortable, I wore heels the whole time with no noticeable limping. 

And then the reception started.

There was really only one comment but it was enough to tick me off for the next three days. I expected a comment about marriage to which I had crafted a catch all response that was very truthful but didn’t give away much and would help me transition the conversation to ANYTHING else.  

But this is what I got:

“So, where’s your boyfriend?”  

“Oh, that was done awhile ago.”

“So where’s the new one?”

“There’s not one right now.  I’m just really focusing on getting myself together and that’ll come when it comes.”  Like it?  I thought it was good?

“You know, physiologically, the best age to have children is at age 19.”

“You know, I think they frown on that nowadays.”

“How old are you?”

“30.”

“Ohhhhhhhh…….”

My sweet grandmother jumped in and redirected the conversation right before I could respond with “so, how is your terminal cancer treating you?”

I stayed for probably another hour, fuming mad the whole time.  When I got back to the hotel, I took another bath and then dreamt about a boy I don’t need to be dreaming about.  And again last night.  And got emails referencing him yesterday and today.  WHAT IN THE WORLD.

He never actually said anything about my RA specifically.

And I have no way of knowing if said family member knows about my RA.  No idea.  He obviously didn’t know I was single.  Which leads me to believe that I’m not high on the family gossip hierarchy.  Which is awesome.  I also have no way of knowing if I would’ve been upset if he hadn’t said that in a way that I could easily link back to my health.  You can probably tell what I tacked on to the end of his sentence.

Thanks to the powers of my analytical skills, I felt like he threw it in my face which I am positive was not his intention.  He’s always been very blunt and not terribly PC but he’s never been malicious. 

I guess I need to get a better deflector statement and I need to have a serious talk with RA: it’s not all about you!

But it still hurts.

I’m tired.

I’ve had a go go go past few weeks.

I have:

-Spent a week in CA for work. Going to bed at midnight CA time but waking up automatically at 645 NC time does not make RA happy.

-Drank too much tequila my last night in CA and flew back to NC with an extreme hangover.

-Hangover plus stiffness from traveling plus lack of sleep=mini flare.

-Slept for two days. Fitfully because random places keep swelling.

-Went to bluegrass festival in the boonies.  Was the only ‘non-hippie’ there. LOL.  Was made to stand in the back of the bus on ride back to parking area.To quote my friend, “how do you feel being made to stand not just in the back of the bus, but in the back of THIS bus?”  Laughed hysterically and blasted Outkast on the way home. 

-Learned from this situation that even if I’m in a flare, I don’t hurt as bad if I do something I want to do vs something I have to do.  Would this be called selective RA? Ha.

-Hit my highest personal production my office has ever seen.

-Had to deal with some growing pains due to my increased production.  But growing pains because of increased production = good whereas growing pains caused by shrinking production = not good. 

-Stress from high production and growing pains = skipping lunch, not drinking enough water, increased fatigue.  Continued random pains.

-Found out our company’s chief sales officer (who is kind of scary…but very nice in person) would be spending a day with me….the day before she got there….and wanted to go with me on several client appointments. No stress.  While dealing with a mini flare.

-Pulled said appointments out of my rear.  Still not quite sure how I did that with such big prospects and such little notice.  Mini flare became ‘congratulatory flare.’

-Screwed up my Humira injection- it clicked like it normally does when it’s done.  It was not.  Spraying approximately $1200 worth of Humira all over your kitchen is not good for flare.  Or temper.

-Had my direct supervisor in town Monday – Wed this week.  Direct supervisor is a hoot but a horrible driver.  I thankfully did not get carsick.  Again.  Jolting around in a car for three days is not good for mini flare.

This weekend, I head to my cousin’s wedding.  If you don’t sense excitement, you may be correct.  Nothing against my cousin.  I love her and I’m very happy for her. But the last thing I want to do is to spend more time in a car, more time on my feet, making small talk dodging questions about both RA or why I’m still single at a dry wedding with vegan meal options in a barn in the middle of nowhere.  For real.

I need a massage.  And a break. 

Goodnight!

Advocates for Arthritis

Wow. Wow. WOW.

I don’t even know how to catch you all up on everything that’s going on.   I’m exhausted but in a good way. So bear with me if this seems a bit scattered…I have so much to talk about that there is no way I can do it justice.

I really truly feel that the only control I have over my RA is my reaction to it.  I can be negative about it and let it hold me back (and exascerbate my  symptoms) or I can try my hardest to keep my life as close as possible to how it was pre RA.  The second choice is clearly the one that works for me although sometimes I do still have a really hard time with it.  Every once in awhile, I’ll have these identity crises- I know who I was before RA and who I was on track to being without it….so what does this mean to who I am now? 

The easy answer is the same person.  The hard answer is the same person.

I continually search for outlets to mesh the “pre” and the “post” me and I just got back from one of the best RA specific experiences I’ve had to date.

This past Monday and Tuesday, I had the privilege of being a part of the American College of Rheumatology’s Advocates for Arthritis Capitol Hill Fly In.  For those of you who are not familiar with this, it is a non-partisan (ie the only way I was comfortable participating) yearly event where a group of rheumatologists and patient advocates from all over the country jet in to discuss legislative issues that affect rheumatology with their local members of Congress. 

The trip had been on the books for quite some time and it was an absolute circus to be doing this in the midst of “current legislative events.”  Literally, the phones in the offices didn’t stop ringing, people were running in the halls at times, media was everywhere, and it seems like every major health organization was represented up there that day.

Issues that we discussed:  (I’ve linked these to the issue briefs for those interested)

• Supporting the enactment of The Arthritis Prevention, Control, and Cure Act of 2009
• Support Arthritis and Rheumatic Disease Research
• Support Preventive Health Care: Medicare Fracture Prevention and Osteoporosis Testing
• Support Fair Physician Reimbursement: Permanently Fix The SGR
• Ensure Patient Access To Specialty Care: Reinstate Consultation Codes (looking for the link on this one)

Prior to our meetings to prepare us for our Capitol Hill meetings, they had a patient advocate reception.  I wasn’t sure what to expect and was a little nervous at walking into a room full of other patients I didn’t know.  I’ve never been accused of being shy but still, it’s a little intimidating. Also, when I’m nervous I either a. turn in to Rain Man b. chatter and giggle incessantly or c. curse like a sailor.  Please God, do not let me do any of the above.

I did not.

What a diverse group of wonderful people all the patients advocates were!  It was amazing- all ages and many varying levels of disability were represented.  (Not that levels of disability matter at all but coming into this, I was worried that I’d have fatigue issues/feet issues but decided the proper response was to NOT verbalize this fear when I saw that several of the people who were so excited to walk all around the Capitol had walkers…THAT is impressive.)  I love that so many people affected by this are so involved!

By luck, I wound up sitting at a table with Melinda Winner, another RA patient whose website I love to stalk.  She is hysterical and truly inspiring- while dealing with multiple types of arthritis, she still manages to write and promote her cookbook, Cooking With Arthritis, and travel the world doing all sorts of fun things like appearing on the Food Network! 

The rest of the day was spent brainstorming with our teams (generally a patient and several rheumatologists), discussing the issues, and dinner.  I was 100% exhausted but excited for the day to come when I hit the sack at the ripe old hour of 9PM. I’m so young and fun.

Our meetings on Tuesday with members of Congress were eye-opening. There were so many things I hadn’t realized about how our country works.  First, we were prepared ahead of time that most of the staff in these offices would be young, REALLY young.  Knowing that, I still wondered if the gentleman who greeted us in the first office was old enough to drive. (No, I didn’t ask.)  In spite of being so young, they are remarkably well informed and well spoken.  Everyone listened attentively, asked a few questions, and agreed to review the issues we spoke of. 

We were also prepared ahead of time to realize that we weren’t going to change the world in a day.  Meaning that getting them to review the issues or, on a more basic level, understand what rheumatology is, is still a success.  Given that criteria, I feel like our team did a very good job.

Highlights of the day?  Hmmmmmm…..three highlights. 

• First, the made to order pasta bar in the dining room.  FANTASTIC although I did have to tell them to take it easy on the garlic. That could potentially be bad for business!  
• Second, one of our meetings was with the legislative aide for one of our NC Representatives…who just happens to be a childhood friend of mine.  Who I also was on dance team with for years- so someone who knows what I used to be capable of and may understand just a little bit more of what this diagnosis means to me and to other people diagnosed.  I hope I didn’t scare her….
• And third, meeting yet another Representative who has Rheumatoid Arthritis.  I feel good that RA (and other types of arthritis) are beginning to have a “face” where it matters.

So.  What now?

I realize now more than ever how important it is for us to have an accurate image out there- in the media, in magazines, in society, and in government- regardless of what side of the fence that you sit.  I’m still floored and greatly inspired by the number of patients I met who are doing just this.

I plan on keeping in touch with the people I met up there as well as attending next year (if they’ll have me!)  I plan on continuing to volunteer and finding other ways to get involved.

I’m enjoying feeling like the same old me.  Albeit me who is still exhausted and whose feet still really hurt.

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.