Gratitude

So I’ve been doing a gratitude challenge that several of my friends have sent me…and it’s actually been pretty enlightening.  It’s a month long series of exercises where you write, think and reflect about positives in your life.  I’ve also challenged myself to say two positives about every negative thought I’ve had.  Some of them have been quite funny.

Negative:  We’ve had a peeping tom problem in my apartment complex and I’m scared.

Positive: I finally checked to make sure that all my windows and doors lock properly and have finally gotten to know all my neighbors. 

Positive:  The cops that responded were hot.

So, in honor of Thanksgiving, here’s my rather warped list of things I’m thankful for:

1. A family who is much stronger and closer after going through tragedy,and even though some of them are batshit crazy, they are the ones who make get-togethers….interesting.

2. Friends who are like family who consistently have my back, who go out of their way to understand my RA and are 100% honest with me, even if it hurts. In my opinion, that last part is the nature of true friendship.

3. Sarcasm, humor, and cursing.  You complete me.  

4. A company that I’ve only been with for a few months who has already promoted me and a manager truly listens and goes to bat for me when necessary.

5. Health insurance that is still a nightmare to navigate (HOLLA- going on 2 months trying to get Humira pre-approved-PLEASE RESPOND) but is still health insurance so that the burden is not on me.

6. A case of Rheumatoid Arthritis that is mild and easily controlled…and has taught me volumes about myself.

7. A move to a new city with few friends that has allowed me desperately needed time to think things out and helped me get my head on straight again.

8. A second run taking methotrexate which has allowed me back into size 6 jeans.  (Although I would not recommend this method of weight loss BY ANY MEANS to the normal person.)

9. A growing RA community that allows a lot of healthy dialogue and helps me to realize that I’m not alone and that what I feel is normal.

10. A year that has been both humbling and enlightening and that is thankfully almost gone.

So there you go!  

I hope you all had wonderfrul Thanksgivings!!!

To whoever keeps making it freezing and rainy here…

MINUS TEN FOR YOU!!!!!!!!

My fingers are swollen, my feet hurt, and I feel really bad for that woman who cut me off in traffic this morning.  I forgive you for that if you forgive me for showing you a certain swollen finger, k?

It’s almost that time again….

So, every year from Thanksgiving on, I focus on how much fun I’ve had that year, how sad I am to leave that year, and a very specific list of things I want to accomplish in the upcoming year. 

This time last year, I had just predicted (accurately I might add) my company was going to tank and had decided that I wanted to move.  I’ll  be honest a year later that the move was more about a desperately needed change of scenery to get my head on straight again than a job.  Having to simultaneously deal with a chronic diagnosis, the shock of the diagnosis, the suicide of a loved one, the fallout/litigation from the suicide, a brother’s deployment, worrying about how said brother was handling said family member’s suicide (happened a month after he returned), friends that were continually putting me in bad situations, and a few douchebags thrown in the mix…is a lot.  And I was being pulled in about 400 different directions which was allowing me to quite successfully avoid dealing with any of them.  I was pretty much just going through the motions.  

My goals for 2009?

1. Get out of Greenville.

2. Get healthy- physically and emotionally.

3.  Eliminate all bitchy and douchey people.

And well…mission accomplished.

 It hasn’t necessarily been pretty. And that’s putting it nicely.  Ironically, in spite of the physical, the hardest part has been #3.  I wound up in tears on my birthday because of someone and  (3 weeks ago!) was called” a spoiled little girl who uses guys to fill a void and feed an ego.”   LOL. Taking a step back now, I wonder why in the world I was even friends with several people in the first place and oh dear God, isn’t the saying “you’re only as good as the company you keep?”  

So, walking through Target this morning and seeing Christmas decorations threw me back into thinking about 2009 and what I want from 2010.  

2009 has sucked.  Totally. I’m not sad to see it leave. Sure, I’ve had some moments of pure fun and sure, I accomplished my goals and sure, I have totally set myself up both physically and emotionally to move on with my life, RA and all, better than I ever could have in Greenville with the circus down there.  But getting to that place and finally dealing with all that crap has been extraordinarily painful.  But painful in a good way….it needed to happen because I feared it would come down to deal with it now or massively implode at some point in the future.

I’m at a point where I’m ok with myself and I’m ok with the things that have happened to me. But I still feel a little breakable and I’m not willing to put myself in any situation that involves emotional stress or drama.

So rather than put pressure on myself with a very specific set of goals for 2010 that I will continually beat myself up about, I only want this: to finally be able to move on from ALL above situations and to finally feel like myself again.

MTX is off the hook…this time

So yes, everytime I have any weird sort of symptom, I immediately look for a way to blame it on my RA.

A week and a half ago, I woke up and my armpits were itching.  Not just a little bit but almost unbearably.  I had just restarted methotrexate so I looked on WebMD and a couple of other places and found a few articles linking this to a. irritation from deodorants or b.some sort of fungal infection not uncommon in those who have suppressed immune systems.  Immediately, bells went off in my head.  Damn you, methotrexate, damn you! 

I was absolutely certain it was (b) but went ahead and bought hypoallergenic deodorant just in case and added it to my list of things to discuss with my doctor this week.  The deodorant didn’t help so I just knew,  JUST KNEW, that it had to be the immune system fungal infection.  I mean, what else could it be?  

Tuesday evening, I was sitting on my couch with a cat on my lap, enjoying a cold fall night.  I was berating myself for not vacuuming up all the leaves I had tracked in when I saw it.  IT.  On my cat.  A wee beast.  Crawling up her neck.  And another!  On her belly.  And OH MY GOSH- another one- on her leg.  I brushed her and examined the fur on the brush- little black specks everywhere. THE HORROR.

A quick call to a doctor friend confirmed the sinking feeling in my stomach: generalized itching could also be caused by fleas.  Especially if the cat spent the day sleeping on my bed.  Which would probably lead to unbearable itching in the morning.

I took a trip to the vet rather than the rheumatologist on Wed (not for me, for the feline) and what I suspected was confirmed: the cat who has never been outside and only sees other animals through the window has a raging case of fleas, most likely picked up from leaves I tracked in.  

So with a good dose of Frontline and furious cleaning efforts on my part, the itching is gone.

So, no fungal infection.  Can’t blame methotrexate for this.  Or even RA.

FLEAS.

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?