Tag Archives: rheumatoid arthritis

Decisions, decisions


I’m so tired of having to make them.

10 years ago, the weightiest decision I had to make was which party I was going to go to.  I mean, seriously people, that was a MAJOR conundrum.  The guys at the Farm were always way hotter but the guys at the House of Big Decks always had free beer…what a quandry!

If you’d told me then that at age 31, I’d be on a medication that’s a low dose of chemo, another one that’s really bad for because it can kill bones and other things, and deciding between two different treatments that are both 8K-10K per year…I would’ve smiled at you, turned away, rolled my eyes as far back in my head as possible, called you crazy and went back to my beer.

What a difference ten years makes!

At my follow-up with my rheumy on Thursday, they approached me about another study.  Yes, I’m supposed to start Orencia last week. Actually, I was supposed to start it beginning of December. But who’s keeping track! I had it scheduled and everything.  But the insurance verification trolls made me delay it yet again.  SO FRUSTRATING.

Anyways, it’s a Phase 3 study by Eli Lilly for a yet unnamed drug that’s showing a lot of promise.  For the first six months, you get either one of two different dosages OR the placebo.  After the first six months, everyone gets the drug for five years. It’s self injectable every two weeks and would require me to stop by the doctor’s office once a month to pick up the injections.

In all honesty, my first response was HECK no.  I saw no benefit for me with the first study I did.  I’m certainly not going to stay on Prednisone for five years- you are batsh*t crazy if you think that’s going to happen. BUT, after reading on the new Lilly drug, learning that you can taper off of Prednisone during the study and doing math on how it would help me financially to not have to pay for co-pays, x-rays, labs, or meds for five years as well as five years of not having to fight with that douchewad known as Blue Cross Blue Shield….well, that right there is something to think about.

The fact that it’s less of a time commitment (on paper) than Orencia and the fact that after the first six months, I’m guaranteed to be on the drug…that’s even more to think about.

I’m torn but leaning towards doing it. I think many of us would say that new medications are scary, not from the side effects, but from the ‘what am I going to do if this doesn’t work?’  It took awhile but I had originally married myself to the idea of being on Actemra. Then my doctor wanted to wait on that and try Orencia first.  I was upset about that until I read more about it and finally agreed with him.  So now I’m married to the idea of being on Orencia.  And now that’s maybe going to change too.

It’s just scary. I think my doctor could see it on my face when we were talking about it.  I got quiet (which doesn’t happen often) and he just looked at me and pointed out that all the drugs that have made it to Phase III in the past 10 years have been very successful.

So now I feel like I’m kinda back to square one without a plan.  Also, I feel more than a little bit jerked around by the insurance trolls.

Am I really old enough and smart enough to be making these kinds of decisions???

It really doesn’t feel like it sometimes.

A rant on perspective


I’ve been tasked with the misfortune of planning my company’s Christmas festivities.  I’ve never been more disappointed or frustrated with my coworkers than I have the past few weeks…

We have a sister division in town who we work closely with; their manager and I wanted to have a joint party so we could combine our meager budgets and do something nice.  Sounds like a great idea, right?  Right. Apparently, my office doesn’t want to hang out with their office because so and so doesn’t like so and so.  That was an embarrassing phone call to have to make…

So I went for Plan B…a small catered lunch with a fun game of Dirty Santa.  But they didn’t want to play Dirty Santa…because what if they found a cool gift they wanted and someone took it away?

Then I proposed an ornament exchange…but ‘nobody wants ornaments.’

I got them to agree upon a regular old Secret Santa.  Someone pulled me aside and mentioned that financially this is a hard year for them so I set a $10 price limit.  Again, more whining because they thought it should be at least $20.  I put my foot down- it’s going to be $10, and you can be happy about it or you can be talking about me behind my back-I really don’t care.

THEN someone had the audacity to approach me with the request that I give her Secret Santa her Christmas list so that ‘maybe I’ll have a chance of actually liking my gift.’ Um, no.  Do not pass go, do not get $200, DON’T YOU DARE SEND ME YOUR CHRISTMAS LIST.  Ironically, the person who asked me this is the person whose name I drew and now I’m having to dig really deep to not purposefully buy something that sucks.

And finally, they threw a fit when they found out I’m having it catered by Boston Market.  Apparently, that’s not nice enough.  LOOK. You turned down a situation where we would’ve had a much larger budget, you embarrassed me in front of another colleague, you’re made this a GIGANTIC pain in my butt…you should be counting your lucky stars that I’m not renting a van, driving you to McDonalds, and making you select a value meal because I’m one complaint away from that.

There’s just too much of an emphasis on things that just don’t matter

There are a lot of negatives that have accompanied this condition- A LOT- but it has helped me grow up a lot and see things from a new perspective.  I lived quite the lovely life until I started having symptoms.  If I wanted something or wanted to do something, it just happened.  I will admit that I was a bit snotty about it.  But if your worldview your entire life is that you always got what you wanted, it is a little hard to understand people who don’t have things quite that easy.

Getting RA for me was a super sized serving of humble pie.  All of a sudden, most of the core things I defined myself by- feeling pretty, being the best at anything I tried, choosing any sort of physical activity and putting forth at least a respectable performance, having lots of fun friends and being very social- were being threatened.  I felt fat, ugly, deformed, sedentary, and useless.  I made some really bad decisions, let some really bad people into my life, and threw myself into work. You probably haven’t noticed but while I allude to the first few years of my diagnosis, I have yet to really write in depth about them.  I should and I will eventually…but it’s a hard place to revisit and until I have a little bit more distance between then and now, I just can’t.  Suffice it to say that I felt (and still feel sometimes) that EVERYTHING has been a fight in recent years and that for awhile, I felt like I had lost everything.

I found myself in a really bad place where I really was all of the things that I never thought I’d be and you know what?  The people who mattered were still there.  The job that I was still very good at was still there.  Doing that first 5K and finishing in 42 minutes felt like the biggest accomplishment in the world whereas several years before, I would’ve died of shame with that time.    Weight…it comes off and that feels like a huge accomplishment too.  I hate how I had to learn the lesson and how long it took me to realize it but I have learned how to better spot what’s important and what’s not…and how to really appreciate working through challenges.

I think that’s why I’m having such a hard time with all of this petty nonsense at work.  Because it is all about things- gifts to be specific- that just don’t matter.  All of our hard work this year…the fact that we’ve taken the challenges of a newby team in the smallest office in the region and turned it into a force to be reckoned with (if I do say so myself)…matters and should be celebrated.  THAT is the accomplishment here, not the friggin candle you buy me for my desk.

I know it’s asking too much but I really wish they could see it that way.

Lovely irony is that nobody wants ornaments, right?  Because, as my manager’s gift to everyone, they will all be receiving ornaments.

Enjoy them, Grinches!!!

Mind Over Matter


I love how I don’t look sick.

I love how none of my clients can tell when I’m struggling physically.

I love how few of my coworkers really know that anything is wrong.  Nope, I can usually make it through my pressure cooker of a day with little to know attention to my rheumatoid arthritis.

My days at work can be daunting.  2 different offices, 5 direct reports, 354 (as of last payroll) indirect reports.  I am the jack of all trades and, it especially feels like when I’m flaring, master of none.  I am part sales manager, part sales rep, part HR rep, part accounting, part investigator.  Full time firefighter.  A receptionist when I have to be.

I’m also the bad guy.

Oh yeah, and I have 6 bosses.  Who all have incredibly urgent questions and issues.  That part is lovely.

But I am quite successfully able to get through the day doing all of these tasks with no questions asked and no attention called to my physical condition.

And then there are the days that you feel like this.

Brutal. It’s hard to watch isn’t it?  But luckily nobody can really tell when I feel this way.

What sticks out to me in that video is at the end, when they are carrying her away, and you can hear her crying “I tried.”

Because when I feel like that physically, I also feel that way emotionally.

I’m trying. I’m trying.  I’m trying. And I’m mentally crawling to the damn line right now.

Days like these are the days when the pressure of work becomes daunting. The fact that you’re flaring…again…after you’d been doing so well…is devastating beyond the level that any failed relationship could ever be.  And this pressure and heartbreak mixes with the pressure of being 31 years old, chronically ill but 99% of the time fully functional, single ie sole provider for myself.  This pressure is also called GET YOURSELF TOGETHER, THIS IS NOT THE TIME TO FLAKE OUT, DIG AS DEEP AS YOU CAN, DON’T SCREW UP BECAUSE YOU CAN’T GET FIRED BECAUSE OF A FLARE BECAUSE YOU WILL LOSE YOUR HEALTH INSURANCE AND BE TOTALLY AND COMPLETELY SCREWED.

This pressure feels…insurmountable.

Ironically, I’ve done some of my best work during my worst flares because of the very reasons listed above.

I don’t really know how to tell you how I get through those days. Baby steps?  Bribery? I don’t know. I just do.  My mom has always laughed that I come from a long line of incredibly stubborn women.

I remember sitting in my car at some point this summer feeling beyond lousy and feeling incredibly pissed off because a sales rep had the nerve to call me repeatedly to whine about the hot weather.  I rarely lose my temper but I had to get off the phone real quick because I was two breaths away from unloading several months of frustration, anger, and sheer exhaustion on her. Look sweetheart, I’ve been limping, dealing with swollen fingers to the point that I dread handshakes, and feeling flu like symptoms for six weeks. I’m out in it too and guess what…I’M NOT COMPLAINING.  So it would be very wise at this point for you to SHUT. UP. ALREADY.

But good managers do not verbalize things like that. Nope, they just blog them.

I sat there stewing and as I stewed, I was suddenly so tired that everything seemed hazy and I made a deal with myself: try get through this appointment and you can stop at Wendy’s and get a frosty.

The frosty was excellent.

I wrote this post as a participant in IAAM’s 2nd Annual International Autoimmune Arthritis Awareness Scavenger Hunt, currently happening online at their Facebook page.  They are posting 12 Scavenger Hunt items through Sunday, I am posting #2:  Mind Over Matter.

As I talked about in this blog entry, those dealing with Autoimmune Arthritis often have to find the mental strength to overcome our physical challenges, especially as it relates to keeping a positive frame of mind.

In saying this, here is your Scavenger Hunt Task #2: We all find strength in something when we physically feel challenged (whether that is due to Autoimmune Arthritis or not).  Some have a pet, or a piece of memorabilia, perhaps it’s a hot bath?

Your task for Scavenger Hunt item #2 is to obtain an image of what brings YOU mental strength.  To earn points, that can be exchanged at the end of the online game for free Awareness merchandise, please go to IAAM’s Facebook Page and post a picture of this item, then write why it brings you strength.  This Awareness item is to bring YOU awareness that no matter what challenges life hands you, you have the power to find solice and peace.  So you have 6 HOURS to complete this task, log on to the Facebook page and post.  Time’s ticking!


*IAAM stands for The International Autoimmune Arthritis Movement, which will soon become the 1st nonprofit in history exclusively benefitting Autoimmune Arthritis.  www.IAAMovement.org