Tag Archives: Pain

Returning to the land of the living

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I’m slowly starting to feel better.  Slowly.

I credit Prednisone with that for now- I start my new meds this week.  I think.  Can I get a very sarcastic THANKS FOR NOTHING sent out to BC/BS for dragging their feet so long on approving Remicade that I was able to fully enroll in a study at my rheumatologist’s office instead?  So instead of dealing with their craptastic coverage and customer service as well as paying co-pays for all sorts of things, I’m going to get a little bit of extra cash, free meds, free labs, free x-rays, and weekly appointments with my doctor for….free.  SUCK ON THAT, BLUE CROSS BLUE SHIELD.  I really appreciate it.

Anyway.

This past weekend was the first weekend since probably April where I really felt that I was present and engaged in my life at a level resembling normal.  I’m trying to slowly increase my activity levels both physically and socially. I went on several short walks around the park.  I went to the Farmers Market and got a ton of fresh fruits and veggies for $15.  Then I came home and I marinated chicken in tequila, lime juice, onions, and garlic.  Then I popped it on the grill with fresh farm grown squash and corn on the cob.  I served all of the above with fresh home made salsa.

I have to say that even for someone who hates cooking, there is something satisfying about your whole house smelling like cilantro.

The whole preparing of the meal, the actual cooking, and even the cleaning was easy activity level but busy enough activity wise to keep me from being bored.

And I didn’t burn the condo down.  SCORE.

I didn’t realize until Saturday night just how “not there” I’ve been.

I met a group of people out for drinks at one of our usual haunts.  I walked in, sat down at the bar, and ordered a glass of wine.  At a lull in the conversation, another friend came up to me and said that a bunch of people were going outside to play bocci ball and did I want to come.

“OH!  YEAH!”  I slid off my chair and started following her outside.  I LOVE bar games. I didn’t intend to play myself because my wrists are still sore but when there are drinks, balls/darts/other things that must be thrown/rolled/hit/flung and then you add in my friends…something funny always happens.  Particularly at this bar where the nimrod who installed the bocci ball court made it face a busy street with a low wall.

Nope, I’m not missing this for anything.

Before I could even walk 10 feet, my friend stopped and turned around smiling.

“Wow.  That was actually sincere!”

I just smiled.

For sure.  But ouch. That clearly implies that she knows that most recently I’ve only been going through the motions of things and maybe not terribly enthusiastic to hang out with her and the others even when I thought I was putting up a good front and that…sincerely hurts.  On the flip side, the fact that she/they continue to include me when I’m sure that some nights I’m about as much fun as a root canal…means the world.

I really do have awesome friends.

My friends didn’t disappoint- neither cars nor pedestrians were injured in our game but one of my friends hit the back wall with such force that it split the ball in half.

And, as yet another sign that I’m still not back to 100%, I woke up Sunday morning feeling that groggy, super tired slight hangover feeling.

Really? 2 glasses of wine?  And lots of water?

What the heck?!?

That’s just wrong.

HTNWBBKQ8XV5

Tequila is gluten free.

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So yes, that’s pretty much my big take away from the weekend that started early Saturday morning with a shot of Toradol in my ass.  We’ll get to that in a moment….

Have you seen the movie Mean Girls?  It’s one of my favorite movies- snarky, hilarious and very well written (in my opinion).  If you haven’t seen it, in one of the plot lines, Cady is trying to sabotage Regina by telling her she should go on an all carb diet to lose weight.  Regina, not the brightest crayon in the box, keeps holding up items of food and asking “is butter a carb?” or “is bread a carb?”

So yes, that’s kind of how I feel right now grocery shopping.  It’s taking me forever and I literally read every package to see if it’s gluten free or not.  If I can’t tell by packaging, I whip out my trusty Blackberry and google “is rice gluten free?” I’m sure it’s pretty funny if you see it in action- me staring with a vacant, blank, confused stare intently at what is for most people a very simple package of food.  I’m sure it’s even funnier if you know much about my cooking style which I’m pretty sure I’ve alluded to here on multiple occasions.

Welcome to my home.  Allow me to heat you a wonderfully fresh gourmet Lean Cuisine.

But I’m slowly getting there.  I’m still cheating…but not as much…and have found a couple of things I really like.  I’ve found some items that are gluten free that really surprised me- TEQUILA and rice.  I even made a delicious Lentil casserole tonight.  And with that statement, somewhere, somehow, an angel got its wings.

I was being overly ambitious thinking I could go gluten and dairy free at the same time.  In fact, that’s what I was cheating with most often (I sprinkle a little bit of cheese everywhere- feta on eggs, cheddar on salads etc- and the soy cheese was awful.)  So I’m going back to baby steps- gluten free first.

So, about that shot in the ass….

I’ve give you the short version for now.

-  I went to a friend’s 30th birthday party on Friday night.  I rested all week for it, bought a new dress, and was really excited.

- Friday am, in true RA form, after a few days of feeling a little bit better, RA decided to make things more interesting.

- Things were so interesting Friday night midway through dinner that I left early.  I am still embarrassed- I tried to leave quietly but everyone asked why I was leaving and I had to give a bit more info than I wanted to at that time, especially to people who for the most part I don’t know.

- Saturday morning I woke up and things RA wise felt curiously differently.  By curiously different I mean REALLY EFFING AWFUL.  I wound up going to Urgent Care in tears, getting a shot of Toradol and prescriptions for another Medrol pack and Vicodin.

If I ever have children, they will be named Toradol and Vicodin.  For real.

That afternoon my neighbor, who witnessed my early morning emotional breakdown in the parking lot, came over to check on me.

Neighbor: So, how ya feeling Rockstar?

Me: A little better. Tired.  Sore.

Neighbor:  (chuckling) You must’ve had quite a night.

Me: (annoyed stare)

Neighbor: Ok, if you don’t want to talk about it…was it that bad?  Was he old or was he just not hot?

Me: (finally getting what she thought had happened) No, I was not drunk.  No, I was not walk of shaming home in tears.

I appreciate that though.  That’s awesome.

I would really like for my insurance company to hurry the heck up and approve this new medication.  Like immediately.

Hopeful?

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I’ve had this awful feeling for the past five weeks of “just push through it.”  Telling myself “I know you don’t want to do it and I know you’re oh so tired but you have to do it anyways” about virtually every facet of my life has been exhausting.  And when I finish one of the things that I made myself go to, I am totally and utterly wiped.  Physically and emotionally. It is important to note that the things I’ve made myself go to with this mentality include but are not limited to: work, church, family functions, and early dinners with friends.

This weekend, I didn’t feel this way.

Friday after work, I went and got a massage.  I realized when I was undressing that I’ve been completely lax with certain things.  I’d like to publicly apologize to my massage therapist for the leg follage she had to touch.  And also for the thong.  I typically wear granny panties to massages so therapists don’t think I’m a whore…but I haven’t done laundry in three weeks so she should be grateful that it was at least clean.  Awkward.

I know you all were dying to know that. 

Then I had a quick dinner date with a guy I don’t really like.  Horrible, I know, but flare or no flare, it’s a recession and a girl’s got to eat.  Is it even more horrible that I totally dished about the RA to him in hopes of scaring him off?  And is the worst thing here that it didn’t phase him at all and while I should be impressed, I’m actually really annoyed?

Flares don’t necessarily bring out the best in me.

I was tired when I got home Friday evening and got in bed to watch a movie.  I actually slept through the night for the first time in a long time.  Yes,  I finally caved and took the Tramadol.

It was a hundred degrees here on Saturday.  I awoke mid morning to a text from a good friend asking if I’d like to go to the lake that afternoon.  I got up, made myself a cup of tea, and sat on the couch assessing my level of fatigue and the stiffness of my joints.  And then I had a rather uncharacteric (of lately) thought: why yes, I DO want to go to the lake today.  

Hhhhhmmmmmmm. Interesting.

The water at the lake was perfect and felt amazing on newly de-follaged legs and sore joints.  I’ve learned that my flares like heat. I was a little concerned about climbing in and out of the boat since I am weaker than normal but it wasn’t a problem.  My friends were concerned about weakness too and made sure I was always on either a tube or a raft and brought an ample supply of bottled water for me.

I hit a wall around 10 pm that evening but considering that I’d been outside since 3pm, that seemed pretty reasonable.  I was home and in bed by 11 and awoke still covered in lake water and SPF 2000 about 9am this morning.

I’ve been tired and sore today but not as much as usual and  I spent my day doing laundry and cleaning.

 Do you hear that sound? That sound? No, THAT one! What is that?

Oh right, the choirs of angels re: laundry.

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!

To myself in a flare

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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

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.