Tag Archives: chronic illness

I need to feel my age again!

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There are so many things I’d rather be doing this summer.  SO MANY.  Like traveling, drinking and chatting it up with hot guys while scantily clad on boats, briefly wearing killer heels outside a club before I switch them for the flip flops in my purse, and that whole acting like I’m 30 instead of 90 kind of thing.

But no.  Nope.  Instead I’m recovering from the flare I am now calling How To Spend A Ridiculous Amount Of Money Very Quickly And Have Absolutely Nothing Whatsoever Tangible To Show For It At All To Include Incriminating Pictures Or Embarrassing Stories: Part III.

NO BOAT DANCING HERE.

Sigh.

Ok, so maybe I’m a little bitter.  I’ve been really tired the past few days.  And then last night, my friend and I went to get yogurt at a place up the street from me.  And we saw these three girls walk by, dressed to impress, and one of them dared to give both of us a judgemental look.

OH HECK NO.

Sure, it was a Saturday night and sure, we were out in public with both of us wearing gym shorts and tank tops but you know what?  WE DIDN’T LOOK LIKE B LIST STRIPPERS.  (If you’re interested in a concise definition of a B-List Stripper, it is a stripper who is scheduled to work daytime hours.  Just sayin.)

But after I got over how angry it made me and after I successfully used Austin Powers moves to navigate my car out of the itsy bitsy parking space that was made more complicated thanks to the brand new Mercedes on the right that only gave me 7 inches for margin of error, I realized that part of the reason I was so angry was because I miss being that girl who gets dressed up every Saturday night.

I hate resting.  I hate taking medication.  I hate that my friends invite me to things and then react with complete and utter shock when I actually show up.

I don’t necessarily want to be wild and crazy.  For the record, I got the bulk of my demons out in early college.  But you know what…I would just like the OPTION of being wild and crazy if I felt like it.  Hey Amanda, want to conduct some extensive experimentation with illicit drugs?  Why yes, I’d love to. Not really.  Not ever actually.  But you know what?  If someone were to ask me that, I’d like to at least feel that I had the choice to say YES. Maybe I’m weird. :) But feeling like I don’t even have the option…sucks.

I feel like I’m missing out on so much. I moved here a year ago and while I have wonderful friends here so far, there are big chunks of time where I don’t do anything with them.  I’m terrified: out of sight, out of mind, right? And I don’t even add those periods of time to the period of time I spent when I was newly diagnosed- isolating myself from everyone and just being pissed off at the world.  It was QUITE healthy.

I miss being myself.  I miss feeling like myself.  I miss looking like myself.

Except I never looked like a stripper. Thank you very much.

One lovely blog…

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I’m kinda embarrassed because there is most certainly a delay in me getting to this.  Bad blogger, stupid flare, bad blogger!

I was nominated for the One Lovely Blog Award by both KirBir over at  Not Standing Still’s Disease and by Nessie at Lipstick, Perfume, and Too Many Pills.  You all need to go check out both blogs- KirBir is a twenty something with Still’s Disease/JRA and Nessie is a twenty something reporter with psoriatic arthritis.  Both are fantastic reads!  Thank you so much- I’m sorry I’m such a slacker!

And now I will be passing the nomination on to….

Joan at Notes From Oklahoma

Tricia at The Sarcastic Soprano

Jo-ann at LivingRheum

Morgan at Small Town Girl In A Big City

Jennifer at Project Jennifer

Wonky Warrior at My body might be wonky but that’s not the most interesting thing about me! (by the way, I LOVE your title!)

Cari at My Bum Thumb

Mallen at Making Lemonade

Beth at Pain, Pain, Go Away

Jules at An Attitude of Gratitude

GO. READ. LOVE. :)

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

On the wrong side of the karma stick

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I may have purposely forgotten to mention that I may have been a little rough on one of the nurses at my rheumatologist’s office last week.

I may have been a little frustrated that it took them 2 days to return an urgent call.  I may have been more frustrated because it takes at least 2 days to get a response on anything from them.  A two day turn around on a random question is gray area (in my opinion); a two day turn around on an urgent question is never acceptable (in my opinion).

I may have spoken a little harshly with the nurse who had the misfortune of calling me back after I left a second message asking for a response.  Perhaps a little more harshly than was warranted for said situation and definitely too harsh based on  the fact that she really was taking the time to try to understand what I was asking and trying to help me.

I may have been a complete brat and she definitely didn’t deserve that. As soon as I hung up the phone, I felt awful.

Enter karma.

At my appointment yesterday, I may have had my labs drawn by….you guessed it…the nurse who I was not terribly nice to on the phone.

I was immediately embarrassed and told her I was sorry for how I spoke to her on Friday.  That I was really frustrated but it was no excuse for me to talk to anyone that way, let alone someone who was trying to help me.

She was super nice about it, said she understood why I was frustrated and not to worry about it.

And then…don’t you see this coming…she got to go fishing in my arms.

No, I know she didn’t do it on purpose.  My veins just like to roll.  This is not the first time this has happened and I’m sure it won’t be the last.

Complete suckage yet simultaneously totally hysterical.

Moral of the story: Don’t yell at people who may have to stick needles in you.

Duh.

Whining Moratorium

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I looked back at the past few posts and got a little mad at myself.  So I’m making a rule for my posts for the next few weeks: PUT ON YOUR BIG GIRL PANTIES, AJ, AND STOP WHINING.

Yes, I don’t feel wonderful but no, life doesn’t suck completely.  Or at all, for that matter. I’m getting on my own nerves so I would gander it’s fair to say that you don’t want to hear it either.  And it’s definitely not productive. So to commemorate the beginning of my blog attitude adjustment, I will tell you some good things that have happened the past few days and not dwell on how bad I may or may not be feeling.

I got to spend a lot of quality time with my favorite “caretaker.”

People who don’t know me well don’t know that she is MUCH more than ‘just a cat’ to me.  If I’m sad or upset or just not feeling great, she’s right there by me as pictured above.  She’s also right there by me if there is anything fleece involved. LOL.

I figured out how to connect my laptop with my TV and then how to stream Netflix on my laptop.  So I’ll hook it up, lay down with my favorite fleece blanket, cuddle up with my favorite cat and relax the day away.

Things at work are going really well.  I hit the highest I’ve ever produced (at this job) this last month (which I hope is indicative of the economy trending in general but we’ll see) and got a nice bonus check.  I’ve been obsessing over getting a grill and found one on clearance for $70.

Once I had it home, I realized I had to put it together.

Estimated time to assemble: 1.5 hours.

Time it took me to assemble: Let’s just round it out to 7 hours.

I suck at following directions.  You know how the joke is that men don’t read maps?  Well, Amanda don’t read directions.  At least when it comes to assembly.  It should be, afterall,  easy because you know what the final product is supposed to look like, right?

The actual screwing itself was slow going. (THAT’S WHAT SHE SAID. Sorry, cabin fever has turned me into part adolescent boy.) I had to take breaks because my wrist was sore and had to use a wrench to hold pieces together because my fingers couldn’t. Then I realized I had put several pieces on backwards and had to backtrack.  Somehow, during the disassembly and reassembly process, the whole box of screws and flanges oddly managed to fly across the room.

I have no absolutely no clue how that happened.  A ghost?  The cat? A Hogwarts spell gone bad?

In all honesty, it kinda became one of those ‘for the principle of it’ things.  By God I’m putting this damn grill together, I don’t care how long it takes me, I don’t care how bad it hurts, it’s just got to happen.

And well….

It’s a grill!

And have I mentioned that the tomatoes I’ve been growing out here are also looking good?

I went today to watch one of my friends compete in her first kayaking competition.  It was ridiculously hot and I was wiped out by the time I got to the section where they were play-boating at.  I have good friends who try to take care of me without outright saying that they’re trying to take care of me: there was an extra chair, sunscreen and an unlimited supply of Gatorades waiting on me.  Very fun and very sweet!

So all in all, a good weekend even though I’m not at 100%.  I go back to the rheumatologist tomorrow and then am heading to the lake with some friends for a long relaxing holiday weekend.

Embarking on a new adventure

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And one I’m not terribly excited about nonetheless.

After much reading of books and blogs and much discussion with several friends who’ve made the leap, I am going gluten free, sugar free, and dairy free.   

Immediately.

I am waiting another month, for the good of all mankind, to go caffeine free.

I am in considerable grief about saying goodbye to my favorite food group- processed- and full of confusion as I dropped all the Cokes off at the communal office kitchenette.  I may have to go back in and, with a sharpie, write on all the  bottles “NOT FOR YOU AMANDA.”  And then, most tragically, I ended my quite lengthy relationship with the best, most dependable, tastiest men on the planet (except for you James Franco)- Ben & Jerry.  SOB.

There are several reasons why I’m making this switch- first, there have been studies showing significant improvements in RA patients who follow gluten free diets.  Since I’m not doing well right now, going gluten free definitely can’t make things worse.  So, why not? Second, if the phrase “you are what you eat” is really true, then I am a Chocolate-Caramel-Macchiato-Lean Cuisine-Calzone-Coke-Easy Cheese-Angel Hair Pasta-Bottle of Red Wine-Chicken Wing rather than an actual person. Third, I’ve always had food sensitivities and allergies.  I’m allergic to shellfish and avocadoes- allergic to the point that when I accidentally get these in my system, I immediately develop huge sexy Angelina lips that are so NOT sexy because they are accompanied by some pretty impressive wheezing and (wait for….wait for it) EAR SWELLING.  Let’s just say that I was the complete life of a Superbowl party one year without intending to be.  Cringe. I’m also lactose intolerant.  It would make sense to me that if 3 known foods lead to some very violent reactions in my body, it is possible that another type of food could lead to a less pronounced and immediate reaction.

I’m at the point where something’s got to give and I need to make sure I have all my bases covered.  This is something I’ve been considering for awhile and something that at this moment I feel like I can’t put off any longer.  I’m also dropping the last remnant of dairy in my life (cheeses) and eliminating sugar (at least in a refined form- I’m still eating natural sugars.)

So yes, back to the events of this week.

I have no idea what I’m doing.

My weekly trip to the grocery store yesterday took me over an hour.  I’m usually in and out in 15 minutes- I walk in, grab some oranges, and then head for the freezer section.  But yesterday, I walked in with a list and had to read the ingredients on all of the packaging before I put it in my cart.  I also switched grocery stores- from Harris Teeter to Trader Joe’s because TJ has a more extensive gluten free/ organic selection- so I had NO CLUE where anything was.

I am happy to report that I can eat corn tortillas and found gluten free refried beans and soy cheese.  That is my favorite meal, as disgusting as it sounds.  So, suffice it to say that I shall not starve although I am about as excited at the prospect of “soy cheese” as I usually am about dental work.

My immediate goal for now, besides that whole “I have no freaking clue how to cook thing” or that irritating “so I’ve read the book, now how do I really do it” is to find replacements for the things that I crave and/or eat frequently.  There’s just no way I’m going to succeed at this if I don’t.  And quickly!

To do this, I have emailed our local culinary school to see if they offer continuing ed classes that would help me to better understand what I can eat and how I can prepare it.  And maybe, just maybe, they can include a quick little seminar on Water: Tips For Boiling.  LOL.  

This could be interesting.

I feel like such a dirty hippie. :)

Does Trader Joe’s sell patchouli? 

Note: give me a day or so and I will have my reading materials posted for those who may be interested.  If you’d like to start where I started, do a Google search on “wheat gluten mechanism AND rheumatoid arthritis.”

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.

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!