Tag Archives: Meds

This flare is really getting to me.

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I finally got into the doctor on Thursday.  

“Dr. D, I’m having inflammation and pain in new joints.”

“Like which ones?”

“Um, how does that kids song go?  Oh right, HEAD, SHOULDERS, KNEES AND TOES, KNEES AND  TOES. Ok, maybe not head but also wrists, hips and fingers. And also, I am unable to comfortably do the movements to the aforementioned children’s song right now.”

“Hmmm, and on our last visit I thought you were really starting to show improvement.”

“Sure.”

He examined me and agreed that things have really regressed.  We are pricing out two options with my insurance company- either Remicade or Actemra- and hope to have a final decision made later in the week.

“Is there anything else I can take in the interim?  I’m really having a hard time functioning?”

“Are you not taking the Tramadol I called in for you last week?”

“No, I do not take pain medicine.”  

Yes, you read that correctly. I believe that pain is a good warning sign.  I don’t want to NOT feel pain and then do something that would end up hurting me more.  My pain is caused by inflammation- I want something to treat the inflammation. Does that make sense?  

You should probably also know that I worked in a pain control clinic for two summers in college that coincided with the debut of Oxycontin.   Best job ever for two reasons: HOT RESIDENTS who invited me to attend ‘liver rounds’ with them on Thursday evenings and a handful of our patients were so nuts that I never had a boring day. So even though I may joke about pain meds and laugh about the potential of medicinal marijuana for RA patients, I’m actually pretty adamantly against it on a personal level.   I do realize that I am most likely in a different league of patient than what we saw there: our worst drug seeker was the alcoholic who passed out drunk on the train tracks and lost his legs.  True story- only in the south….

“Well, I don’t want to give you anymore Prednisone- I know you don’t like taking it and I know the problems you’ve had in the past weaning off of it.”

“I’m not asking for Prednisone.  It’s just that I’m taking x Aleve a day to get any relief from the inflammation and I don’t think it’s good for me.”  (imagine eyes bulging out of his head and no, I’m not willing to admit the number but let’s just say there’s a limit in the PDR about how many you can safely take in a day and my intake matched just that.)

So he put me on Mobic.  Not really a fun of it but my stomach likes it better.

I stopped at the vending area to get a Coke before my bloodwork because I didn’t have any breakfast and really thought that passing out during/after bloodwork would be pretty sucktastic.  While I was there, I got to peek into the infusion center.  I was actually pretty impressed- it looked like a “real” infusion center, not like a doctor’s office infusion center.  

Bloodwork was a breeze as usual and I was out the door fifteen minutes later.

I’m feeling a little better tonight after 2 days of good rest, good food, and some serious quality time in the hot tub and steam room at the gym.

And now it’s raining so I think it’s time for me to get in bed and enjoy the sound!

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.

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Hello frenemy #2.

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

I’m tired.

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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!

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.

A Day in The Life

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6:45 AM:  Alarm starts buzzing and gets a swift (albeit soft due to RA fingers) whack to the snooze button.

6:55 AM:  Alarm buzzes again.  Swift soft whack repeated.

6:59AM:  Cat slinks into room, jumps on bed, and meows to say “for real, already, I NEED FOOD.”

7:05AM:   Combination of alarm and needy cat avert whack to snooze button and I groggily rise and assess cat bowl situation. I catch myself walking gingerly because I’m not sure how my feet feel yet to see that there is plenty but she demands a top off.  Occasionally, opening the lid of the container hurts. But what can I say…she’s a little diva.

7:10AM: Shower – problems opening shampoo and conditioner bottles which has influenced brands that I buy. Initial daily assessment of my aches and pains. 10 fingers, only 2 or 3 sore  = success. 10 fingers, 8-10 hurting = bad mood. Same with toes, knees, shoulders,wrists although I only have 2 of the last three mentioned.  Having 10 of the last three would not be bad mood but rather inevitable reality show stardom.

7:15AM: Hair drying, makeup application, clothing selection, longing glances back at the bed.  Minor difficulties with sharpening eyeliner with little pencil sharpener, sometimes picking a different pair of pants or shirt depending on condition of fingers and tightness of buttons.  Occasional difficulties on bad mood days with opening and squirting out toothpaste.  On really really bad days, it hurts running my fingers through wet tangled hair.  Thankfully, that hasn’t happened in quite awhile. Knock on wood.

7:30AM:  Breakfast time.  Usually soy yogurt.  No difficulties here unless you consider the lack of variety of soy yogurt available in the Charlotte metro area a difficulty.  (I would like flavors other than strawberry and blueberry and I hate fruit on the bottom.  But that’s all I can ever find.  In 3 different grocery stores.)

7:45AM: Time to head to work.  Minor difficulties in locking both front and back door.  When it’s cold, I can’t lock the deadbolt on the back so I lock the switch on the outer back door (which is actually more secure- found this out the day I locked myself out and a locksmith couldn’t get it open) and always difficult to turn the key in the deadbolt on the front.

7:55 8:05AM:  Arrive at work.  If I’m the first person there, opening this lock is always difficult.  Luckily, I’m never the first one there. 

8:00AM – 12:00PM: Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

12:00PM – 1PM: LUNCH.  No difficulties here.

1PM- 5PM:  Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

5PM- 6PM:  End of day meetings/conference calls/ occasional networking events/ drive home.  Occasional problems on bad mood days with peeling and sticking name tags on myself at networking events and also fatigue.  Minor difficulties every day with unlocking front door.

6PM- 10PM:  Dinner with friends, Happy Hour, dinner at home, gym, and other miscellaneous events.  A lot of times, the gym gets cut.  I’m most comfortable on the elliptical- good range of motion exercise for joints if you take it easy on resistance.  Difficulties with grasping free weights- I’m learning how to use the machines. Still afraid to try classes. Minor difficulties with cooking- it’s uncomfortable to grasp a knife to cut, inability to exert force to open jars, nervous to lift heavy baking dishes in and out of oven with hot pad due to not feeling like I’m able to grasp baking pan as well with hot pad. Fatigue is an occasional problem with all above except Happy Hour.  There is no fatigue in Happy Hour.  (Said with same intonation that Tom Hanks uses in A League of Their Own when he says ‘there’s no crying in baseball.”)

10:15PM: Wash face, take meds.  Minor difficulties opening pill bottles. 

10PM:  TV time in bed with feline.  Occasional problems getting comfortable with shoulders and wrists depending on if/where cat chooses to lay on me.  Occasionally discomfort caused by this makes sleeping impossible.  End of day assessment of aches and pains. 

Wash, rinse, repeat.

I’m a little sad that I can’t remember any other way now…

But I still feel very blessed.

We’re in good company!

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I’ve been a little upset with myself lately- mainly for my lack of follow through on certain commitments to myself.  The actual diet plan is going…ok.  I’m not cheating as much as I was.  The no caffeine thing…lasted a day.  If even.  The whole “get out of the house and meet new people in this new town you’re living in”….ok but not great.  At times the RA doesn’t help (fatigue, hurting feet, nausea from mtx) but there comes a point where it becomes my excuse too.  That has got to stop!

In the endless quest for inspiration, I’ve been reading and searching online for direction.  I inadvertantly stumbled upon a quote that made me smile and then a story that knocked my socks off.

“I would rather regret the things that I have done than the things I have not.”

- Lucille Ball

I grew up watching reruns of “I Love Lucy.”  I would laugh hysterically at the silly situations she got herself into and loved  the crazy faces and gestures she would make.  I may have even gotten into trouble once or twice for trying to recreate some of her famous slapstick physical comedy which resulted in me having my head swung into a wall.  Explains a couple of things, right?

From seeing her show and reading about her, I can totally see that she lived this phrase to its fullest. 

And then I read that Lucy had Rheumatoid Arthritis.  And she was doing all of these hijinks while feeling the same pains that we all are.  And hiding it.  Can you imagine?  Talk about putting on a brave face x1000!

You can read about it here.

 Looking at everything that she accomplished and knowing that she accomplished it in a time where there were hardly any effective medications and at a time where disability was not spoken about, it makes me very grateful to be dealing with this in 2010.  

It also makes me realize that I am my own worst enemy.  If she can do it, so can I!

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.

A Valentine’s Day Poem for my insurance company

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Roses are red.

Violets are blue.

Your customer service sucks completely.

I hate dealing with you.

Mad props to the call center dude who doesn’t really speak or understand English (especially English from the south) who asked me a bunch of pointless questions, put me on hold for 10 minutes, asked me the same pointless questions again and rudely, put me on hold again, and then hung up on me when I asked to be transferred to a supervisor.  

Karma, my friend, karma.

Still waiting on the rheumy appointment and now waiting on refills since my insurance changed on January 1st.  Having to get everything re-referred and re-preauthorized during a flare does not make me the happiest person in the world.