10 Things

I’m not really wanting to write about RA today.  Sometimes I worry that RA completely takes over my life.  And that is just unacceptable.  So to break things up, I thought I’d tell you 10 facts about me that have absolutely nothing to do with RA.

1. I was born in GA and have lived in SC and NC.  I’ve traveled the US extensively (there are only a few states I haven’t been to) but I’ve never left the country.  Everytime I try to schedule a trip, something comes up.

2.  I’m extremely claustrophobic.  Hell for me is sitting in the middle of a row because I feel like I can’t get out.

3. I’ve never been able to tan.  I have two colors: white and lobster.  Lobster doesn’t look good on me. I also have scars on my shoulders from a really bad burn in high school. So white it is.

4. I’m incredibly accident prone.  I really did fall down a handicap ramp once.  I also fell down the steps at a birthday party for my friend’s daughter.  Screaming the f word in front of a bunch of 3 year olds did not make me friends with their parents. And finally two summers ago, I did this to my leg in my gravel driveway.  Ewww.

5.  I love new clothes but I hate shopping.  I always wind up in the dressing room with the annoying kid who thinks it’s funny to peak under the dressing room door (happened last weekend at Steinmart) or in line next to the kid who is fah-reaking out because he missed his nap so his mom gave him a Red Bull to tide him over.

6. I hate reality dating shows.  It never ceases to amaze me how worked up people get over PEOPLE WHO HAVE TO GO ON TV TO GET A DATE.  I’m sorry but there’s just no way I could take someone like that seriously.

7.  I like other types of reality shows.  Intervention, Hoarders, Teen Mom (holy crap, I’m 30 years old and my mom would still kick my butt if I tried to cop half the ‘tude that some of these girls have!), anything with the Kardashians.  My personal favorite is Confessions: Animal Hoarding in that I can remind my pet that yes, life could be SO MUCH WORSE than living with me.

8. I spend too much time on my phone.  It’s embarrassing.

9. I LOVE bar games.  Trivia, darts, beer pong, you name it.  Love it.  Note that I never said I was good at any of them.

10. Without sounding cliched, I have some pretty fabulous friends and family.  I realize here that I’ve bitched more about some that were not so fabulous…but I’m a pretty lucky gal in that respect and am going to try to take some time to ‘introduce’ you to some of my lifesavers.

I’d love to hear more about y’all that’s not RA related!

To myself in a flare

Dear Amanda- In-A-Flare,

Please print this out and carry it with you until your flare subsides.  Just a few observations on your recent behaviors and maybe a few tips to make things easier for you once you’re no longer a whiny b*tch.

-Your home: I know you’re hurting and I know you’re tired but really…it is BAD FOR BUSINESS when it starts to look like an episode of Hoarders.  FOR THE LOVE OF GOD, just put the dang clothes in the hamper.  Seriously.  This is only a little bit more effort than the floor and you can actually make it fun- aim for the basket.  SLAM DUNK. *imagined people cheering.*

-Your kitchen: Just because you don’t feel good doesn’t mean that you are suddenly Paula Deen cooking up some comfort food.  Nope, you’re Paula Deen getting hit with the ham….Amanda, you can barely boil water.  So don’t put yourself through the stress of “I think I’d feel better if I made myself some corned beef with veggies” because even on the best day YOU ARE COMPLETELY INCAPABLE OF MAKING CORNED BEEF, then you’ll be upset about it, and then you will leave the dishes in the kitchen for days because you don’t feel like cleaning them up.  And then the ants will get them.

-Showers: these should be taken daily.

-Those comfy sweat pants and the shirt with stains on it: should never be worn outside the home.  Also, should never be worn INSIDE the home if people are coming over.

-Other people who piss you off: for the most part are not doing it on purpose. Please take a deep breath or a quick walk before deciding how to respondto them.  Trust me on this one. Also, there is no conspiracy- never has been and probably never will be- so once and for all let this idea go. And finally, I realize you were really upset when that eighteen wheeler blew a retread on the highway directly in front of you.  I realize that it was scary that you had no room to avoid it and were very lucky that you had to run over it and didn’t damage your car.  HOWEVER, the appropriate response was to just stay put in traffic or pull off at the exit.  NEVER EVER EVER should you furiously dial his safe driver line marked on the back of his truck while speeding up and angrily waving the phone at him so he could see what you’re doing.  Please now go back and read that whole conspiracy bit again.

-Your mom: Should not be snapped at because you’re annoyed that she always says methotrOxate rather than methotrexate.  Seriously, you’re being really petty.  She’s asking about it because she cares and is concerned, remember what we just talked about regarding that whole conspiracy thing? 

-Major life decisions: don’t go there.  Just don’t. 

Keep in mind that while things suck right now that there are a lot of people working hard to get you feeling better.  In a month, this will all be a distant memory.

Feel better,

Amanda-Not-In-A-Flare

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.

Spring Cleaning Confession

Oh the things you find when you are cleaning out the closet!  And oh the things you get attached to and probably should get rid of but just can’t bring yourself to do so! 

I will be the first to admit that I sometimes get very attached to random bizarre things. A certain Lion King coffee cup I’ve had since middle school that was my first foray into “I’m so grownup that I’m going to drink coffee and be an adult dammit and you’re going to recognize it”, a pair of white denim capris that I would never wear anymore but were my “skinny” pants and keep to try on to keep myself in check, and then these…

When I was first experiencing symptoms, these were the only things that were comfortable.  And wear them I did as evidenced by the fact that they can now “smile” at you.

They were purchased as a gag Christmas gift from my brother right before he went to Iraq.  And let me tell you, I was even more attached to a number of things he gave me while he was there.  One of them being a ficus tree.  No lie.  I guess to me that if I kept them close to me (and kept the tree alive) that I felt like he wasn’t so far away and that he would be ok.  After he got back, I let the tree die and definitely lost attachment to the other things I had kept close.

But I still couldn’t get rid of these silly slippers.

Slippers logo’d with a team I don’t really root for.  Slippers with a good two inches of foam built into them.  Slippers that made my early time with RA a little more bearable.  Slippers that made me the butt of jokes with my friends.  Slippers that I haven’t worn in quite awhile because I’m not in pain anymore. Slippers that obviously mean something to me…but I’m just not sure what.

Slippers that I just put back in the closet.

Happy New Years!!!

I think we’d all agree that 2009 has been a tough year for everyone.  Whether it’s dealing with RA or dealing with the financial crisis or just dealing with life…the stars just didn’t seem to align themselves properly this past year.I mean seriously, last New Year’s Eve, I got food poisoning.  That should’ve given me a heads up…

In my own personal group of friends, we’ve had trying times.  Financial muck, divorces, illnesses, breakups, mother in laws that just need to leave well enough alone, job losses. Nobody seems to be immune. I had a nice long chat with a good friend last night and she mentioned that she felt as though she was in the ocean being dragged by currents and beat up by waves and that she just couldn’t seem to keep her head above water.  She told her mother this and her mother’s response was “but you’re still floating…and the waves will eventually push you back to shore although it might be a little further down the shore from where you started.”  (To which she told me, “yes, until the sharks start attacking.  We really are friends for a reason!!!)

I’ve been mulling it over and I think her analogy and her mother’s comment are the best way to sum up my year too.  I have: sold a house, lost health insurance, had to leave a job because of health insurance, moved, started a new job, been on lots of medicine, been on not much medicine, been back on even more medicine, got promoted, had friend drama, lost several good friends, gained a few new ones, dealt with family issues, started running again, started having problems with my hands again.  Quite an extensive laundry list. Sigh.  And she’s right- everything is different now but different is ok.

I read earlier today that this New Year’s Eve is a blue moon.  A blue moon typically happens every two years- it’s simply two full moons in one month.  But a blue moon on New Year’s Eve is very rare- probably won’t happen again for 20 years.  So, I’m setting my sights on making 2010 awesome in every way possible and am thinking, just maybe, that this is a sign that the stars are finally aligned.  For starters, today I am NOT eating anything that could possibly be undercooked or cross-contaminated.  A tad bit superstitious of me perhaps!

Happy New Year’s to you all- I hope that this new year (and new DECADE) brings you everything you’re looking for!

Christmas Recap and RA Gifts!

“Merry Christmas to all and to all a good night!”

Still my favorite quote that directly relates to Christmas.  

On Christmas morning, I woke up to a bunch of text messages from friends and family. I love that about the holidays- I’m not being sarcastic yet, I really do get a kick out of who I hear from on Thanksgiving, Christmas, New Years, and my birthday. Sometimes it’s a very pleasant surprise! As Hugh Grant so eloquently states in Love Actually, phone calls made from the planes on 9/11 were not calls made out of hate but out of love.  (I realize if you haven’t seen that movie, you wouldn’t relate that quote to Christmas.  So go see- it’s one of my favorites!)

 Enter sarcasm. You may have noticed that I do not post about specific guys and myself.  That is purposeful.  But you may remember a gentleman I described a few weeks ago. The one who called me a “spoiled little girl who uses men to feed an ego and fill a void?” The one who has sent me 200 (seriously) text messages over the past few weeks, none of which were returned? Yes, that one. I’d like to thank him for the Merry Christmas text that included an up close picture of “himself.” Yes, you read that correctly. I thought it oh so appropriate how he thought sending that would help me more fully celebrate the birth of Jesus Christ. How…classy.

Hey, if you’re going to send something like that, be prepared to be called on it.  Be grateful that the picture is not posted- I promise you that NOBODY wants to see. For the record, I have never seen you unclothed and you have earned a spot in my history as the most bizarre thing a guy has ever sent me, hence it is mention-worthy. 

Ok, sarcasm complete. Back on track.

I am pleased to announce that I am new owner to two RA friendly gadgets. Ok, gifted with one and went out and found the other.  But still, I love that my family is getting into finding me cool ways to modify things I struggle with.

– Automatic wine bottle opener from Brookstone. It is glorious! You pop the plastic off the top of the wine bottle, set the bottle opener on it, press the button and it’s off! Fantabulous! The downside- I’m feeling the need to “practice” too much.

– Jar opener. My mom is having problems with osteoarthritis in her thumbs so my dad got her this nifty little gadget that helps you open jars. You fit it firmly around the jar top, secure it, and open the jar with the handle.  I went out and gifted myself with this yesterday- this isn’t the exact one I have but very similar.  

After gifts, we enjoyed all the Christmas trappings. My family has a tradition every holiday that we cook London broil. We’ve done this for years- probably stemming from the Easter where my dad managed to drop the whole hot turkey from the oven onto the kitchen floor directly into the cat food when he went to check on it. So London broil, sweet potatoes, cranberries…OH MY! Good times were had by all.

I sincerely hope you and yours had a wonderful holiday (whatever you choose to celebrate) and are gearing up to start off 2010 with a bang.

And hopefully no obscene text messages.

Protected: Gratitude

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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!

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.

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.