Tag Archives: Rheumatologist

Just a few thoughts on a Sunday

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This is random and scattered.  Just a warning!

-I got my bill for my joint aspiration last month on Friday.  All in all, total cost of aspiration was about $400, most of which was covered by my insurance.  That’s a miracle.  Especially since it was coded as “in office surgery.” If I’d known I was having “surgery,” I would’ve made some special requests.  Namely that awesome laughing gas I received when they took my wisdom teeth.  

- I went to church with friends this morning.  I’m a bit of a church snob because my grandfather is a Methodist minister.  Let’s just say that Granddad would be none too impressed that I went in jeans and flip flops.  I was kinda weirded out by that too but with how my feet feel lately, flip flops are amazing.  Anyway, the pastor was talking about financial freedom and about how he’s not trying to tell us what to purchase and what not to purchase but rather that we need to make decisions that give us freedom from debt.  So I was bored (I know, it’s wrong to say I was bored at church…but I was) and started thinking about if there are any choices I could make that would give me freedom from RA.  Not freedom by not having it (trying to be realistic here) but freedom by marginalizing it, by “putting Baby in the corner.”  

I realize that I need to make better choices about my health.  I live how I live until I flare and then I get all self righteously indignant on how “I had a salad last week dang-it and it sure did have  lot of veggies and I chose the LOW FAT dressing too because that is how terribly committed I am to my health.”  But come on Amanda: if you were as terribly committed to taking better care of yourself as you say you are when you’re flaring, you would’ve had that salad chock full of veggies more recently than last week!

I do realize there are other things that factor into flares but with this one, I am my own worst enemy.  I am very successful at making dietary changes….for about two weeks.

And before I turn people off by appearing to be anything close to deep or broading, I will tell you that I got the silly giggles during the last song (hymn? is it still called a hymn in a contemporary setting?) when everyone around me was swaying with eyes closed and hands in the air.  

-And finally, you know you’re taking Prednisone when you walk in to pay for your gas and find yourself lustfully eyeing everything “Little Debbie.”  OMG Zebra Cakes.

Back on prednisone

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Why hello to you too, my sworn frenemy.

I love and hate you equally.

I love you because you will give me some relief until my rheumy can get me into to his first available appointment…in June.  (Don’t get me started.)

I hate you because …..well crap, I hate you considerably more than I love you.

I hate you because I only take you when I feel like absolute poo.

I hate you because you prove that it IS indeed possible to gain a lot of weight when you have absolutely no appetite.

I hate you because you make my skin crawl and give me night sweats.

I hate you because you make Aunt Flo come early and give me crazy mood swings. 

Addendum: My coworkers hate you for that second part. And my mom.  And the poor customer service reps at my insurance company.  But let’s be honest- I really don’t care about the feelings of my insurance company, prednisone or not.

I hate you so much that everytime my doctor mentions putting me on you, I cry.

*************************************************************************

Hello frenemy #2.

I do not hate you at all because on Saturday, you will meet YOUR sworn frenemies- full foils and bleach.

Joint Aspiration Follow-Up

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The joint aspiration of my left pointer finger occurred approximately a week and a half ago.  

Here are some pre and post pictures for you.

What my left pointer finger typically looks like:

What my left pointer finger looked like immediately post medical assault (note the red puncture marks on the left side, sexy RA nodule on the right):

What my left pointer finger looked like 5 days post medical assault:

Doesn’t it look so different from before?  Doesn’t it look so much better?

Yes, I don’t think so either.  Moving on…

And then, on Thurs (about 9 days after) something happened.

I was sitting at my computer typing when I realized that typing didn’t hurt me.  Not even a little bit!  I looked down…

Hello almost normal sized left pointer finger joint!  How are you?  I haven’t seen you in ages…like 4 years.  Have you lost weight?  Because I recall you looking like a sausage and now you’re rather hot dog like.  You look GREAT! I am ECSTATIC to see you!

Having an almost normal sized joint in that finger is both a blessing and a burden.  I’m very self conscious about how it looks when it’s so swollen so the blessing is to have it looking normalish right now.  It’s a burden because at normal size, I have more of an idea of what I’m dealing with in terms of loss of use and joint destruction.  

I still can’t bend it all the way.

Nor can I fully straighten it.

It just kinda hangs there, somewhat useless.

What usually feels so swollen now just feels weak.

The nodule looks like it’s gone but I can still see it when I bend the finger.

I’m not sure if it can be ‘rehabbed’ at all or not.  I may not be able to straighten it because I have absolutely no muscle tone left.  That I can fix.  I may not be able to straighten it because I have so much joint damage.  That I cannot.  I think that it’s most likely the second option but when I go back to the rheumatologist in a few weeks, I plan on asking.

I’ve had a few pity parties the past few days over the thought of having that much joint damage but I guess it just is what it is.  If I hadn’t had the aspiration, it would’ve continued to be swollen and it would’ve continued to erode the joint.  And when the joint was so swollen, it was basically useless to me anyway.  Which means I shouldn’t be upset about it but really doesn’t make it any easier to look down at it and seeing it looking almost normal yet not capable of doing what  I need it to do.

First Joint Aspiration: I did not die.

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Today I am typing with one hand because yesterday I had my first joint aspiration and cortisone injection into my left pointer finger. And yes, it was just as much fun as it sounds like, maybe even more.

At my rheumatologist appointment last month, he mentioned that he may be doing this at this month’s appointment if my finger didn’t look better.  Actually, he mentioned he might be doing this on two fingers so I guess I lucked out? 

Sure. 

So, as he was examining my hands I wasn’t surprised when he said he needed to do one.  I figured that it would be one of those things like “sure, let’s do one.  Talk to the scheduler and we’ll set you up to come back for it.”  That way, I’d have at least a few days to either wrap my brain around it or find a way to get out of it.  So when I said that  I would be out of town the rest of the week but could do it next week I was a bit surprised when he responded ‘that’s great that you’ll be out of town- because we’re doing this right now.”  He stood up, fetched some supplies out of the cabinet and started prepping the needles.

“Put your hand on the table and sit on the stool.”

GULP. 

He pushed and pushed on my finger with his hands, I assume trying to assess where he was going to go in from, which really really hurt. 

Then he finished up his prep work- one large syringe with a large needle that he would use for the aspiration and one smaller syringe and needle that he filled with a whitish liquid (cortisone).

“Ok, I’m ready.  You ready?”

NO!  I’m NOT ready.  I don’t let ANYONE touch my left hand so WHY ON EARTH would you EVER think that I’m ready for you to stick a needle in it? Being “ready” for this to happen is a day that will never come.  The better question would’ve  been “have you come to terms with the fact that I am the expert here and this really is the best thing for you” or “are you sure you won’t haul off and pop me when the needle goes in?”

I quietly shook my head yes and told myself to look away.

He sprayed my finger with the numbing agent and I didn’t feel the needle go in.

Gosh, those are some great mini blinds.  Are they plastic or are they wooden?  I prefer wooden but plastic is more affordable and in some cases easier to keep clean.  And a lot of the plastic blinds can be made to look like wood.  I wonder if I could afford plantation shutters right now.  I like plantation shutters. Wow, I’m doing it.  This isn’t so baa……  WHY THE HELL ARE YOU DIGGING AROUND IN THERE? Mini blinds, mini blinds, MINI BLINDS.  IT FEELS LIKE THE NEEDLE IS COMING OUT THE OTHER SIDE,.  Great, then I can put an earring through it- maybe a bull ring- as if my finger doesn’t look freakish enough- LET’S PIERCE THE DAMN THING.

“Ok, I’m done aspirating.  Now the cortisone.”

Ok, aspiration kinda sucked but I hear cortisone feels great once it’s done.

HOLY HELL.  I THINK MY FINGER IS GOING TO EXPLODE.  No really, actual explosion.  Joint, finger meat, and blood- coming at you in just a minute.  OH MY GOD. 

“Please stop.”

“It’s ok, I’m done.”

“I can’t bend my finger at all.  Is it supposed to do that?”

“Yes, I couldn’t aspirate as much as I wanted so you can’t bend your finger because it’s full of cortisone.  It’ll go down quickly.  Let me get you another bandaid.”

As I stood up, I realized that there was visible sweat on the table from where I had my other hand resting. 

“So, this will go down- it’ll probably be a little tender for 48 hours and you probably won’t be able to bend it for the rest of the day.  I couldn’t aspirate as much as I wanted which probably means that the joint lining is now really thick.  The cortisone should make it go down though so we’ll look at it again next time.  We may have to do it again, on this finger and possibly on the other one.  But I won’t make you do the other one today.”

Damn right you won’t.

And, drama queen tendencies aside, I don’t think it’ll be as scary next time.

Advocates for Arthritis

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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)

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.

Amanda-1: PPO-0

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For now at least.

After submitting all my paperwork (mainly 6 years proof of continuous credible coverage) to the insurance douchelord company,  I finally got the word today that I really can see the rheumatologist next week.

You see, this same company who I am now covered by (again) and I have a checkered past.  This is the carrier I was with when I was diagnosed.  So, I learned the hard way that I CANNOT go to the rheumatologist until I have all my ducks in a row because it will be a nightmare to sort out on the flip side.

I really do feel bad for their customer service reps.  I mean, it has to be a horrible job.  I would imagine that everyone who calls in is like me- ticked off.  And they can’t really do anything to help you.  And (and this is going to sound horrible) the only way to get any attention from someone who CAN help you is to not be the nicest person in the world.  And that makes me feel pretty crappy.  For the record, I do tell them that I’m not mad at them personally and I realize that they are just the messenger.  But still…

So today, the poor rep excitedly announces to me that they have all my paperwork and that I’m good to go.  Underwhelmed.

Really?  I’m not falling over with gratitude that you DID YOUR JOB and will be fulfilling your BASIC policy requirements?  After I only had to fax it 3 times?  And call multiple times after that?  And what does that really mean?  Does that mean that you’re going to pay the bills in accordance to the policy or are you going to put me through the same ordeal you have in the past?

I so wanted to shout: DO YOU NOT KNOW WHO YOU’RE DEALING WITH?  Yes, it’s me- the girl you had to reimburse 3K several years ago after you drug your feet on paying bills in a timely fashion which forced me to make the painful decision of put it on the credit card vs. let it go to collections.  And then I (gasp) continued to follow-up with you because I’m pretty sure you assumed I would just pay off the balance and forget it. But let me tell you something you probably already know: I can beat the heck out of a dead horse.

And let’s talk about lab work.  A big chunk of that bill in the past was just that.  You have this nifty little loophole where you won’t pay for labwork that’s drawn more than 5 business days OUTSIDE of the appointment.  OUTSIDE, not AFTER.  So say your doctor likes to have your current labwork in front of her AT your appointment.  Would it not make sense that she gives you orders to have it drawn 3 days before?  Which falls less than 5 business days OUTSIDE of your appointment.  But someone in your corporate office interprets it to be (and from a calendar standpoint this is correct) more than 5 business days AFTER your last appointment.  

Seriously, we fought about just that for months.  OUTSIDE vs AFTER.  And the policy says OUTSIDE.  And I WON. I call that my Elle Woods moment.

Did you like the letters I wrote to the insurance board?

I realize I sound kinda psycho about this.  But put 3K that you don’t have on a credit card with the realization that the person who’s supposed to pay for it is trying with all their might not to and see how you feel.

Very defensive.  

I am feeling better.  True to form, the finger isn’t looking so nasty but I am taking the picture with me.  I still think it may be time to switch up medications.

Oh God.  I’m going to have to start the process all over with that.  

Those poor CSR’s.

Hitting the proverbial wall

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This past week marked my 4th diagnosiversary.  January 11, 2006.  Woo hoo.  Did I plan any sort of celebratory event?  Um, no.  I do not celebrate things I’m not excited about.   I noted the date, rolled my eyes, and as best as I could tried to not think about it.  Unfortunately, my RA had different plans…

I’ve been fighting a low grade cold since before Thanksgiving.  I get almost better and then come in contact with someone who reinfects me.  It’s awesome.

I typically have “flares” when I’m either really stressed out or have any other sort of event that my immune system has to battle.  I swear, this RA thing is an absolute DIVA- if my immune system has to divert some of its forces to battle a cold, RA gets its panties in a wad and stages a mutiny.  This happens to me about twice a year.

I don’t have typical flares where all of a sudden my affected joints are completely swollen and locked.  Like I said, my flares are almost exclusively accompanied by a cold or flu. It’s more of a gradual thing and it’s more of a combination of different symptoms- I start to notice more swelling over a period of a few weeks that I can always find excuses for (overuse, increased exercise etc.), I usually start to experience minimal joint pain in joints that typically aren’t affected and then WHAM, my iron and potassium levels bite the big one.  The fallout from the drops in my iron and potassium are actually more incapacitating than the joint pain (now- this was not the case when I was newly diagnosed.)  This is usually followed by a dramatic increase in joint pain. Hence, hitting the proverbial wall.

Monday am, I awoke to increased swelling in my fingers despite having taken methotrexate on Sunday night.   That’s funny….but I’m on cold medicine so maybe it’s not working right.  I still figured nothing was amiss when Monday night I was in bed by 8:30pm.  I must’ve been tired- I don’t even remember falling asleep and I seriously feel like I was drugged.

It took me 45 minutes to get warm again after a client site visit on Tuesday.  I thought I bundled up enough.  Oh well, lunch will warm me up.  I seriously want the biggest rarest hamburger Cracker Barrel can give me.  And lots and lots of those salty steak fries! Those who are familiar with my eating habits would know that this is unusual.  

While driving on the highway back from my visit, I have to suddenly stop and take back roads because I’m so shaky.  I have this weird feeling that I am going to lose control of my car and slide sideways underneath a tractor trailer.  I’m never taking Mucinex again- makes me too jittery.

At a Tuesday evening dinner with my boss, I basically do not participate in any of the conversation because even though she’s talking to me about work, I can’t process any of the things she’s saying. I’m so tired.  All I want to do is go to bed.  This Mucinex and this cold have really knocked me out of whack.  And my feet are starting to hurt.  And my shoulder is sore right now too.  WTF!

On Wednesday morning, my coworker tells me that I look like I could be in Twilight.  Yay- I knew pale would finally come back in.  I know I’m sparkly like Edward.  When I finally looked in the mirror, I realize that I most certainly am NOT sparkly like Edward.  I have bags under my eyes and I’m gray.  I try to adjust my make up to hide this and end up looking like I’m wearing warpaint.  I decide to call it a day and go home and rest.  Afterall, this cold is kicking my ass.  My fingers really hurt, for some reason my left knee is bothering me, I’m bruised, I’m shaky, and I just can’t concentrate worth a damn.  I finally get my first thought that maybe it’s not just the cold at work here…

Wednesday evening, I leave my cave of a bedroom for a much needed haircut.  Hey, I am female- no cold gets in the way of beautification! LIGHTBULB!  EPIPHANY!  BREAKTHROUGH! When my hairdresser asks me what my favorite TV show is and even though I am concentrating intently on every word she’s saying, I DON’T UNDERSTAND THE QUESTION NOR DO I HAVE AN ANSWER.  I nod in agreement that I just love watching The Bachelor (oh, the horror).  To set the record straight, I do not love watching The Bachelor.  I the opposite of love watching The Bachelor. I would rather watch paint dry. Upside down.  Naked.  In Times Square.

All of a sudden, this whole experience is hauntingly familiar.  Extreme fatigue- check.  Bruising- check. Acting like a space cadet on crack. Extreme mental fogginess- check. Strange muscle pain- check.  Increased joint pain- check.  Joint pain in places that usually don’t bother me- check.  

Ohmygod- I’m having a flare.  And I’m anemic.  And I’m hypokalemic.  

When paying at the salon, they ask me if I want to schedule another visit.  I don’t understand a word that they’re saying but tell them ‘no, I have to go to the doctor.’  They stare at me and half-smile when they take my money and watch me walk out the door.  They think I’m crazy.

I locate my iron and potassium supplements I have stashed in my car. (I know, shouldn’t be kept in the car!)  I am able to get into the doctor the next day to verify that I am indeed super low on iron and potassium.  I am told to keep taking the supplements and come back next week for a recheck. Thursday night, I sleep soundly and awake Friday morning well rested yet not feeling drugged.  My joints still hurt though.

Over the weekend, I concentrated on resting.  The joints are still more swollen than normal but the knee has backed off.  The bruises are already fading, I can actually hold coherent conversations.  I still have a cold.

I need to restrategize to figure out a way to pinpoint this earlier.  I also need to figure out how to more consistently take my supplements.  That’s another post though.  Titled: You’re an adult dammit, remember to do this crap!

I’m feeling better.  More than a little bit.  And feeling extremely dumb!

Happy Diagnosiversary, RA.  You are one heck of a skank.