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.

A Day in The Life

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6:45 AM:  Alarm starts buzzing and gets a swift (albeit soft due to RA fingers) whack to the snooze button.

6:55 AM:  Alarm buzzes again.  Swift soft whack repeated.

6:59AM:  Cat slinks into room, jumps on bed, and meows to say “for real, already, I NEED FOOD.”

7:05AM:   Combination of alarm and needy cat avert whack to snooze button and I groggily rise and assess cat bowl situation. I catch myself walking gingerly because I’m not sure how my feet feel yet to see that there is plenty but she demands a top off.  Occasionally, opening the lid of the container hurts. But what can I say…she’s a little diva.

7:10AM: Shower – problems opening shampoo and conditioner bottles which has influenced brands that I buy. Initial daily assessment of my aches and pains. 10 fingers, only 2 or 3 sore  = success. 10 fingers, 8-10 hurting = bad mood. Same with toes, knees, shoulders,wrists although I only have 2 of the last three mentioned.  Having 10 of the last three would not be bad mood but rather inevitable reality show stardom.

7:15AM: Hair drying, makeup application, clothing selection, longing glances back at the bed.  Minor difficulties with sharpening eyeliner with little pencil sharpener, sometimes picking a different pair of pants or shirt depending on condition of fingers and tightness of buttons.  Occasional difficulties on bad mood days with opening and squirting out toothpaste.  On really really bad days, it hurts running my fingers through wet tangled hair.  Thankfully, that hasn’t happened in quite awhile. Knock on wood.

7:30AM:  Breakfast time.  Usually soy yogurt.  No difficulties here unless you consider the lack of variety of soy yogurt available in the Charlotte metro area a difficulty.  (I would like flavors other than strawberry and blueberry and I hate fruit on the bottom.  But that’s all I can ever find.  In 3 different grocery stores.)

7:45AM: Time to head to work.  Minor difficulties in locking both front and back door.  When it’s cold, I can’t lock the deadbolt on the back so I lock the switch on the outer back door (which is actually more secure- found this out the day I locked myself out and a locksmith couldn’t get it open) and always difficult to turn the key in the deadbolt on the front.

7:55 8:05AM:  Arrive at work.  If I’m the first person there, opening this lock is always difficult.  Luckily, I’m never the first one there. 

8:00AM – 12:00PM: Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

12:00PM – 1PM: LUNCH.  No difficulties here.

1PM- 5PM:  Meetings with clients, sales calls, admin work, conference calls.  Occasional problems on bad mood days with the following: typing, assembling presentation handouts, sending emails on Blackberry, fatigue, walking long distances on client site tours.  Minor difficulties every day with pulling and putting files up into tightly packed file cabinets, discomfort caused in knees by sitting in same position for too long, aching shoulders from sitting at desk.

5PM- 6PM:  End of day meetings/conference calls/ occasional networking events/ drive home.  Occasional problems on bad mood days with peeling and sticking name tags on myself at networking events and also fatigue.  Minor difficulties every day with unlocking front door.

6PM- 10PM:  Dinner with friends, Happy Hour, dinner at home, gym, and other miscellaneous events.  A lot of times, the gym gets cut.  I’m most comfortable on the elliptical- good range of motion exercise for joints if you take it easy on resistance.  Difficulties with grasping free weights- I’m learning how to use the machines. Still afraid to try classes. Minor difficulties with cooking- it’s uncomfortable to grasp a knife to cut, inability to exert force to open jars, nervous to lift heavy baking dishes in and out of oven with hot pad due to not feeling like I’m able to grasp baking pan as well with hot pad. Fatigue is an occasional problem with all above except Happy Hour.  There is no fatigue in Happy Hour.  (Said with same intonation that Tom Hanks uses in A League of Their Own when he says ‘there’s no crying in baseball.”)

10:15PM: Wash face, take meds.  Minor difficulties opening pill bottles. 

10PM:  TV time in bed with feline.  Occasional problems getting comfortable with shoulders and wrists depending on if/where cat chooses to lay on me.  Occasionally discomfort caused by this makes sleeping impossible.  End of day assessment of aches and pains. 

Wash, rinse, repeat.

I’m a little sad that I can’t remember any other way now…

But I still feel very blessed.

I needed to see someone who looked like me.

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Wednesday, January 11, 2006

“Your x-rays still show no new bone growth on either foot so we can rule out a stress fracture.  Your bloodwork, however, was much more revealing.  Your rheumatoid factor is a 68; it should be less than 20. Your CRP and ESR are also elevated.  These results, in conjunction with symmetrical joint swelling in your feet and hands all point strongly to rheumatoid arthritis.”

Blink.

“I’m going to start you on several medications today.  Celebrex for pain. Prednisone is a steroid that we’re going to start you on a high level and taper you down.  This will reduce the inflammation while the other medications start to work.  Methotrexate is a chemotherapy drug.  It can have some pretty nasty side effects so we’re going to start you low and build you up to 8 a week.  I’m also giving you a combination folic acid and vitamin B to help combat the side effects.”

Blink.  Chemo???

“We’re going to do this for two months and then re-evaluate to see if you need a biologic.  How do you feel about giving yourself shots?”

Blink.  Giving myself shots?  For what?  I don’t even know what it is that I have. Please just let me get out of here.   

I’d never even heard of rheumatoid arthritis.  When I thought about any sort of arthritis, all I could picture were the elderly folks my church youth group would visit with at the holidays and my great grandmother.  I mean, think about it: that’s generally what’s shown in advertising. At the time, I had no clue that there were many types and that they could affect people my age.  

To make matters worse, after getting home from the doctor that day, I decided to “educate” myself on rheumatoid arthritis.  How, you ask?  By using the END ALL BE ALL most reliable and authentic source of all information in the entire universe: ye merry olde interwebs.  Needless to say, I was much better off “uneducated.” I had no idea at the time that there was such a general misconception of what RA is.  To this day, I see pharmaceutical ads on TV and in magazines that are just wrong.  Hello Enbrel ad from 2009- I shall never forget you. But at the time, I took them as fact.

So I cried for hours and then took my raccoon eyed self to the mall where I dropped $200 on the cutest pair of incredibly fugly orthopedic dress shoes.  I remember thinking ‘so, I guess this is life now. So long running.’ Then I decided my best course of action was to hide this from everyone and would continue to do this for over 2 years.

Let’s just say this was the worst decision I could’ve ever made a decision that made everything harder and based on my own uninformed ideas and leave it at that, ok?  

So, what does Rheumatoid Arthritis look like?

Specifically, Rheumatoid Arthritis was 26 on that day.  A friend, a daughter, a sister, a coworker.  Loves running, kickboxing, reading, dancing. Very reluctant to let go of any of these things. Very sensitive and self conscious when she received  a diagnosis that she didn’t think she was representative of thanks to horrible misconceptions.

Except that she was.  Right on the money actually.

Demographically, RA is 20 – 40 at onset and two to three times more likely female than male.  Rheumatoid Arthritis is an autoimmune disorder in which the immune system attacks joints.  It is chronic yet also very treatable through combinations of very strong medications with many patients (yours truly included) able to eventually return to almost normal.

Yet the arthritis the public generally attributes to ALL autoimmune arthritis conditions is osteoarthritis- the condition caused by wear and tear  from aging or overuse and the ONLY one where “just go take a Tylenol” may yield positive results. 

That’s frightening.

“Buckle Me Up!” International Autoimmune Arthritis Movement is an up and coming non-profit dedicated to helping those suffering from autoimmune arthritis conditions by increasing understanding and awareness through education, partnerships, and support.  We are trying to raise money to finance legal fees and startup costs associated with filing 501(c)(3) paperwork.  

I can’t imagine how much this would’ve helped me when I was newly diagnosed.  Having information and support and people to talk to would’ve made everything so much easier and less scary.  And believe you me, it was a very scary and lonely time.  

It would mean the world to me if you would visit www.bucklemeupmovement.com/donate to read more about this and to donate $1.

The answer is YES.

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Normally, I get a huge kick out of reading the search terms that bring people to my blog.  Some of them are absolutely hilarious and  strangely inappropriate.  But today, I wish I had contact info for the one I just saw.

“Does RA ever get better?”

Yes, my friend, it does.  

It is such a shock to get a diagnosis like that.  I could expound on that forever but you all know exactly what I’m talking about.  

My first reaction to it was deny, deny, deny.  And then take a long boat ride down my favorite river in Egypt.  And then more denying!  

But eventually, once the shock wears off and the treatments kick in, you get some relief.  And once you start to get the physical relief, you can begin to search out the emotional relief.  

It is entirely possible to live a very fun and full life with rheumatoid arthritis.

So yes, it does get better.  Virtual hug!