Tag Archives: Flares

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.

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.

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!