Tag Archives: Friends

Busy!

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I meant to do another update on here on Monday night.

But I was feeling spectacularly horrible from having to leave 10 (yes, you read that correctly) vials of blood at the rheumatologist’s office earlier in the day as well as getting my first shot of Enbrel (I think) too.  I say I think because I am getting either  Enbrel or Humira- the study examines patients who succeeded and then failed on one and then watching the development of antibodies after starting on the other.  (Please note the absence of a phd at the end of my name- it is entirely possible that I stated that completely incorrectly.) Anyway, I’m pretty sure I am getting Enbrel for several reasons.  First, Humira has a distinct injection site sting.  There was no injection site sting but there was an intramuscular sting.  Second, the actual vaccine felt much thicker.  Third, I had a crazy headache the rest of the day and some problems sleeping that night, which I never had with Humira and which are listed as side effects for Enbrel.  Oh yes, I am so that patient who is awake googling side effects of things at 4 am!  Fourth….knock on wood while you’re reading this because I sure am…but it seems to actually be doing something! And, well, Humira wasn’t exactly doing that anymore.

So then I was going to update on Tuesday.

But I felt lousy.  I don’t know if it was from the lack of sleep, the new meds, completely unrelated stress, or what.  It felt like I do every once in awhile on ‘the morning after methotrexate.’  Just shaky and so so tired.  So I came home and got in bed with a movie.

I totally meant to update on Wednesday.

But I was swamped with finishing both a huge presentation for work for Friday and prepping for a regional meeting on Thursday.  Which meant that I stayed late.  But I actually had energy. And I was able to dial back the Prednisone.

I’d lie and tell you I meant to update on Thursday.

But I left my house at 7 am that morning and didn’t get home until after 9pm that night.

And Friday…

I again left the house at 7am, had my boss, her boss, and several additional people with us all day at a huge presentation for a client.  I came home from work and walked up with friends to watch a bike race that takes places in my neighborhood every year.  I ended the night on my back stairs around 2 am, eating pistachios and doing some…..um…..scientific research.

I  didn’t update Saturday because I was still…um…..deciphering the….results of said research.

I think I made a dosing error.

Must. Do. More. Research. SOON.

But not too much research.

And today, right before I wrote this update, I went on a walk AND THEN did a workout tape.  It wasn’t pretty.  I was really winded really quickly. I had to shut the front door AND make sure the blinds were drawn. NOBODY wants to see that. But I did it.  I haven’t done that since Christmas.

But all in all, not a bad week!  I just need to continue on this path and to hold myself back from doing too much too quickly.

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

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.

A New One For Those Keeping Tally

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Excuse the language.  Or if it bothers you, just skip this entry. I’m still a little upset.

“No, I don’t run anymore because I have Rheumatoid Arthritis.”

Momentary awkward pause while his hot little brain mulled this tidbit over.

“But…but…but you’re so pretty…”

Blink.

Swallow.

Vein twitch.

ARE YOU A F*CKING IDIOT?

At what point do you think that something like that would affect me having or not having RA or anything else for that matter?

Do you think immune systems ‘immuno-select’ who gets these things based on how people look or how much is in a bank account or what their last name is?

DID YOU FALL AND HIT YOUR HEAD ON CONCRETE?

That argument has just as much validity as you being very honest and telling me that “I’m dumb as a brick” and me responding with a whiny “but you look like an Abercrombie model.”

And what do I say to something like that? Um, thanks?  I think?

That’s almost as offensive as telling someone who’s lost 2 pounds that they look “SO MUCH BETTER.”

Really?

I mean  SERIOUSLY?

Seriously?

Can you at least follow it up with a well placed question like maybe ask me what RA is?  Anything? I realize that would ask an awful lot of the gerbil running the wheel in your head but just leaving it at that and then uncomfortably staring at me makes you look like Lord of the Douche, getting ready to do a little jig for me, and makes me feel awful about myself.

Yes, I know Mom.  I know I am being rude here.  You’re right- I was raised better than that.  No, please don’t give me the guilt trippy “I’ve raised horrible children” speech.  You’ve made that point numerous times in my life and I forgive you for making me so mean sometimes.  (I kid.) Yes, I will make sure to let everyone know that you sent me to Cotillion.  Twice.  Yes, I know it was expensive and I’m not entirely sure it was money well spent. Yes, I think you’re right that  maybe his parents didn’t send him because maybe (gasp) they didn’t think it was important.

I’d like to point out that it is YOUR daughter here, valedictorian of Cotillion, who is posting f-bombs online.

But seriously, “you’re so pretty?”

You’ve got to be kidding me.

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.