Tag Archives: invisible illness

What’s next

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It was a beautiful day here today and I treated myself to an hour long walk through the park and my neighborhood.

I have to bribe myself to walk lately- I think a summer of laying on my rear thanks to a flare has killed my motivation.  A couple weeks ago I figured out how to stream Pandora radio on my phone (my Ipod is MIA).  So I type in ‘old school rap’ and walk through the neighborhood repressing my urge to start dancing and feeling like a badass.  A badass who limps.

Can I please call that my pimp gimp?

Anyways, I was almost home this afternoon and a good song came on which necessitated an extra lap around the block.  Because, you know, it’s just not as much fun to listen to a good song sitting still!  In the course of that extra block, my left knee and left foot decided to mutiny.

I still haven’t been able to figure out how I can go from just fine to noticeably swollen in a matter of minutes.  It’s cruel.  It’s also evidence to me that I’m still having a lot of disease activity…

I have my last drug study appointment tomorrow.  I will find out what medication I’ve been on although I already am convinced that I’m on the placebo.  Why, you ask?  Because it hasn’t done a damn thing for me.  I feel like I’ve felt before- on the receding end of a really bad flare.  I remember how I felt the first time I took Humira and while I don’t expect to feel such a difference everytime, I would expect to feel improvement.  And I haven’t.  So…the drug study wasn’t beneficial but it also wasn’t harmful.

So what’s next?  My doctor wants to look at infusions. Specifically Remicade.  I want to try Enbrel first for a couple of reasons.  It would be so much easier for me to inject myself once a week than to go for a periodic three hour infusion.  Infusion therapy also really scares me.  I don’t want to try it until I’ve exhausted all easier resources.  I realize that sounds silly.

I’m a little frustrated.  From a lab-work perspective, my doctor says “you look great.”  I’m still seronegative which baffles me but my doctor doesn’t seem to think that is significant.  My CRP has dropped.  On paper, everything is better.  But physically, I’m still not where I was months ago.  My feet and knees are still bothering me.  My shoulder is too.  Remember that hellishly awful joint aspiration awhile back?  That ended up being a bust. Finger= just as swollen as it was before.  The fatigue is better but the nausea can still be a tad bit on the ridiculous side.  I’ve always had a sensitive stomach but it’s getting to be a running joke with my friends.  And if a certain coworker makes one more pregnancy/morning sickness joke, I may need help hiding a body.

Stay tuned- I will be sure to let you know if (when) I’m right about the drug I’ve been receiving and what the plans moving forward will be.

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!

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. :)

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.

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!

I am.

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No really.  

I am.

Are you?

I sure hope so. 

Well, I actually wish you weren’t.  But if you are, I think you should and hope you do.

Because I am.  And I’m doing it for you too.  

Confused yet?

Ladies and gentlemen…for all of us who have whined, b*tched, and moaned over the fact that we don’t have a little yellow bracelet worn by Lance Armstrong (YUM) or snarky bumper stickers and shirts referencing breasts (FUNNY)…

I present to you the brand new “I am…” Silicone Autoimmune Arthritis Awareness Bracelet (CLEVER! CUTE! COMING SOON TO A MAILBOX NEAR YOU.)  

Produced by “Buckle Me Up” International Autoimmune Arthritis Movement (IAAM- I AM- get it? SEE- I TOLD YOU CLEVER!) to help raise awareness for autoimmune arthritis   and to help raise money to for our 501(c)(3) paperwork.  

“I Am…

A Leader for change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I am an Advocate for

Autoimmune Arthritis Awareness.

Bracelets are $1.50 each and can be purchased here.  100% of profits benefit IAAM. Great for yourself, your loved ones, groups and teams!!!

I am.  Are you?


Almost…but not quite.

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I almost love this time of year.

The warmer weather (high 80’s for the past few days!), enjoying a glass of vino on the back patio after work, joints not being stiff and achy from the cold.  And then there’s all of that yellow stuff.  I left one of my clients this afternoon and witnessed a pollen tornado when the wind blew slightly. 

Allergies.  Ugh.

I got in my car and promptly called my eye doctor to order a new box of contacts so I can throw the ones currently caked to my eyes in the trash.

Pre RA, I had serious allergy issues starting in high school.  I was the unlucky butt of the high school gossip machine when, for a whole week during an especially rough allergy season, I threw up every morning in the high school bathroom.  Yes, they thought I was pregnant- friends, teachers, the whole lot of them- and even though I assured everyone that my boyfriend of the time and I were doing nothing that could even remotely cause a pregnancy, it was still highly awkward to have to field those questions, especially when my parents heard about it.  For the record, we realized after a week of this that it was caused by my taking a new prescription of allergy meds in the morning on an empty stomach.  The vomiting stopped when I started taking them at bedtime.  Yes, I’m still slightly defensive of this.

In college, I wound up having to take allergy shots and continued to do so for about five years.  The results were immediate- I remember calling my parents several months after I started them to inform them that I had just been on a hayride. Success!

I’ve always wondered about the interaction between allergy shots and RA.  I mean, I know that if you have serious issues with one thing of the autoimmune variety that it does predispose you to having serious issues with another.  When I was first diagnosed, I really wanted to go back on allergy shots to see if this would help.  I based this off of the fact that I had had such tremendous relief from allergies and that if the shots could train my body how to appropriately respond to allergens, then maybe just maybe it could retrain my body’s response with rheumatoid arthritis. 

I mentioned this to my first rheumatologist and he shot it down immediately.  Oh well.

Apparently, from what he told me, this could actually make it worse.  I can kinda see where he’s coming from with that- I guess that these are two different responses with one immune system- but I have always been curious.  An out of whack immune system is an out of whack immune system is an out of whack immune system, right?

So, while the allergies subsided, the RA ran wild.  My only solace is that allergies tend to change over time- I read somewhere that they run in seven year cycles- so I’m hoping that the RA will surprise me and do the same.

And for now, I will continue to almost love this time of year…with a healthy dose of Zyrtec.