Tag Archives: chronic illness

372 Month Update

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Dear Amanda:

Yes, you are writing yourself a letter in third person.  Why? Well, for one thing, Facebook has ruined you.  You and your friends tend to state things as Facebook status updates.  Why, I am not sure. Damn you, Facebook!  For another, you spend an awful lot of time reading the blogs of all of your friends who have children.  And so, in honor of your 372 month of life, you thought you’d be funny and mock the monthly updates that a lot of them do.

Yes, my dear, you are 372 months old today.  Let’s see what you’ve been up to!

Height: 5’6…you get very defensive if anyone says 5’5 because your goal in life was to be taller than your mother…who is 5’5.

Weight: 110 is the weight on your old SC drivers license.  For the record, it also says you’re 5’8.

Hair: Yes, you’ve had a full head of it for approximately 370 months.

Eyes: Still blue.

Motor skills/development: You’re working on being able to grip things. The actual gripping is fine but you have a hard time with ‘grip and twist.’  Hey, doesn’t that sound like a dance  move? And speaking of dance moves, you’re going to be taking a dance class soon.  You learned another lesson while searching for a dance class.  Never google ‘adult dance class.’  The results will not be what you are searching for.  A better query would be ‘your town name AND dance class.’  You can search through specific studios pretty quickly this way and not have to worry about people seeing the results in your search history.

Language Skills: Some problems here.  Nothing that a well placed bar of soap couldn’t fix.

Diet: You are SUCH a cheater this week.  But tomorrow starts a new week and a new commitment to being truly caffeine, gluten, dairy, and anything that tastes good free.  You really can tell a difference when you stay true to the diet.

Milestones: You are officially off of Prednisone.  YEAH!  Your wrists are really sore today- maybe because of this or maybe because of excessive red wine consumption. Who knows.  But you’re off of it and you’re still functioning which was not the case a few months ago.  Also, you attempted riding your friends bike the other night and while it wasn’t pretty, you didn’t fall on your ass!  YAY!  And when your friend offered to run after you holding the seat like you’re a baby with training wheels, you didn’t say anything incredibly rude!  MIRACLE!  Nope, you just cut your eyes, took another swig of wine, and wobbled down the driveway on the bike (which I may add is WAY too short for you) looking quite mature for your 372 years of life if I do say so myself.

What’s next for you: another glass of wine and some cake.  Duh.  Then some building back of strength/stamina that you lost over the summer, some losing of weight that you gained over the summer, and hopefully some attempting of antibiotic protocol after you finish your study.

Somewhat of a solution

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I sat down to write a post tonight that I’ve been stewing on and all of a sudden things went a little haywire.  Phone ringing, email buzzing, friend stopping by…so until I have a little more time to spend on it I will leave you with something I shared on my Facebook page that I’m still sheepishly chuckling over.

What does one do when one buys an expensive bottle of vitamins from the vitamin store and realizes after one removes the plastic security seal hence rendering it unreturnable that one is totally and completely physically unable to open said bottle after trying with bare hands and numerous implements?

Why you lose your temper and grab that ‘forever sharp and will cut through steel’ knife that your mother for some reason thought you needed when she was at a stooped up tupperware party and that you unceremoniously threw in a drawer and forgot about, you saw the top off, and then you store the topless vitamin bottle in a ziplock bag.

Problem solved.

Crazy Prednisone Dreams

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I have weird dreams when I’m on Prednisone.

Granted, I’m in the process of tapering it off because my face looks like a damn jackolantern…but the dreams still continue and probably will for a little while longer.

A couple days ago I woke up in panic complete with flailing arms because I very vividly dreamed that there was a strange man standing over me.  Awhile back, I dreamed that Oprah was the mother of Michael Jackson’s children.

Um.  Okay.

I can’t figure out where the Prednisone dreams come from- normally I can trace my dreams to events of the day or tv shows I watch before bed.  But Prednisone dreams are just all over the place as far as rhyme or reason is concerned.

Last night, I dreamt that I was on an episode of ER.  And a specific episode to boot.

Strange…I haven’t watched ER since probably high school.  I used to watch Grey’s Anatomy but am more inclined to watch House now because the doctors on Grey’s seem to always kill their patients whereas patients on House tend to survive the episode.   It’s just a quirky personal preference stemming from the fact that I have health problems and don’t want to give myself a complex about having to go to the doctor.  But I’d still love to know why I dreamt about a very specific episode of a show I haven’t seen since probably 1998!

The plot is this: a patient comes in requesting an amputation of a leg (I think) and they put him on a psych hold.  Another patient is brought in by ambulance after having an accident with a chainsaw and, of course, brings said chainsaw.  One thing leads to another and the psych hold/would be amputee commandeers the chain saw and becomes an actual amputee.  Everyone bemoans the whole tragedy but the new amputee is fine and there is some discourse about how the patient felt a disconnect with the leg he so unceremoniously lopped off.

So I woke up and thought…well, that was random.  And my next thought was…I totally get it though.

I sure as hell feel a disconnect from some of my joints.  Especially when I’m flaring like I have been.  I think it makes it feel like less of a betrayal to me although I do still feel that.  A lot. And what if the patient had some excruciating condition on that leg that was completely unresponsive to medication and removing the leg would end the pain?  I realize that it was a psychological thing in the actual episode but taken from a pain perspective, boy do I understand.

Seriously, if someone told me that I could stop my RA pain forever by just removing said joint, I know I would seriously consider.

I also know that, in my case, I would have to lop off joint after joint and would end up resembling the Black Knight from Monty Python with WAY MORE than ‘just a scratch.’  And that even then, I would still have the fatigue and everything else to contend with.  Also, I would probably end up with vicious phantom RA pain because that is how my luck tends to run.

That would really suck!

Wow.  This has ended up a little more ‘dark’ than I intended.  I’m fine- I’ve actually had a very good weekend.  I just thought it was an interesting scenario.  Thoughts?

Here’s to hoping tonight’s dreams feature subject matter that is a little bit more warm and fuzzy!

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.