Monday, June 19, 2017

10 Things Phlebotomists Should Never Say

When I first got sick, I was totally scared of needles.  After getting 27 tubes of blood drawn – yes, I’m not exaggerating, I counted before I passed out (just kidding, I didn’t pass out, shockingly) – at my first rheumatologist appointment, that knocked the fear out of me real quick.

But that doesn’t mean I enjoy getting blood drawn or that it is a particularly pleasant experience.  In fact, most of the time, it’s not.  I’m a hard stick and I’ll be the first to admit that.

After my recent hellish appointment with my new rheumatologist – read until I fire her – the phlebotomists at her office stuck me four times to no avail.  I’d like to blame it all on the fact that I hadn’t eaten lunch or had anything to drink because I ended up spending three hours sitting in the doctor’s office.  But the next day, I went to a hospital lab in the morning, after just eating and drinking, and got stuck four times, as well.  Thankfully, at least the second time around, they were able to get all the blood they needed.

But in the process, between both labs, a lot of pretty dumb stuff was said.  Most of it isn’t stuff that I haven’t heard before.  But the more I hear it, the more annoyed I get. 

So, without further ado and in no particular order:

1.       “You don’t have any veins.”

Clearly I have veins.  I am alive.

2.      “You really are a hard stick.”

My body may be a lot of things.  Weird is definitely one of them. And unpredictable.  But one thing I know with certainty is that I AM A HARD STICK!!!  Don’t say I didn’t warn you.

3.      About those attempts where no blood flows, but as soon as they pull the needle out, out comes the blood:

“Well, at least it’s bleeding now.”

Literally, if another phlebotomist says this to me ever again, I will probably punch them.  This isn’t cute or funny.  It’s called DO YOUR JOB and GET IT RIGHT.

4.      “I bet that didn’t hurt at all.”

Yeah, well, that’s something that I wouldn’t bet money on, because you will lose that gamble.

And don’t ever, ever tell me how I should or should not feel.  Until you’re sitting in my seat, having a stranger poke and prod you, you have no idea what it’s like.

5.      “Can you straighten your arm more please?”

No I cannot.  I have ARTHRITIS.  What part of that is so difficult to understand?  Thanks for asking nicely though.  You get an A for effort and an E for execution.

6.      “Are you sure you’re okay/don’t want any juice?”

I’m super, thanks for asking.  But in reality, if you really cared, you wouldn’t ask that question because you know that the answer is “no”.  There’s nothing enjoyable about the experience, whether it goes “well” or terrible. 

I know that you just want to make sure that I’m not about to pass out and hit my head on the floor and make your job even more difficult than it already is. 

This isn’t my first rodeo.  I’ve never passed out from a blood draw and I’m not about to start now.

7.      “I’m going to try one more time…”

Don’t get me wrong, there’s nothing I love more than getting stuck with a needle, so I could let you poke me all day if you really want to, but if you’ve tried twice and failed, you’re out.  Do not pass go, do not collect $200.  And I don’t care if the lab you work for allows for three or four sticks per phlebotomist.  If you try twice and get nothing, there is a high likelihood that you won’t get anything no matter how hard, or how many times, you try. 

8.     “Wow, the last lab did a really bad job.”

You’re only allowed to say this if you do an arguably better job.  So in theory, if the previous lab stuck me four times and didn’t get any blood, and you stick me four times and get blood, you did a slightly better job.  But to me, unless you get everything in one or two sticks, you haven’t earned the right to bash whoever maimed me previously. 

9.      “You’re going to feel the teensiest, tiniest, little prick.”

And you’re just a prick, no size required.  So I guess it all balances out in the end.

10.  “That’s going to leave a mark.”

I know I bruise easily, and in some ways, it comes with the territory.  But if you’ve stabbed me in such a way that you can already tell I’m going to bruise, we have a big, big problem. 

So please don’t state the obvious and don’t pat yourself on the back for a job NOT well done.  Sorry if I’m not signing your praises.  Sorry if I don’t want to see you ever again.  Don’t quit your day job.  Oh wait…this is your day job…

So there you have it.  If you’re chronically ill, you’ve probably heard some variation on many of these phrases.  And if by chance a phlebotomist or future phlebotomist happens to be reading this, please don’t take a page out of this book.  This is a guide of what not to do. 

Sorry if I sound angry.  But if something had been done to me unwilling and without my consent, and I had the bruises pictured below, it would probably be considered assault.  So forgive me if the routine is starting to wear on me. 

Last Week’s War Wounds

It’s all a little too reminiscent of That Time I Got Manhandled By A Phlebotomist

Wednesday, June 14, 2017

The Storm After Years Of Calm

What’s one of your worst fears?

One of my worst fears, for as long as I have been chronically ill, is seeing a new doctor who disagrees with my diagnoses.

That’s exactly what happened yesterday.

My old rheumatologist is leaving the state so I needed to find a new one.  I opted not to stay within the system my old rheum was in because he and I talked about it, and it wasn’t particularly convenient for me proximity-wise, and he had heard of the doctor that had previously been recommended to me by a family friend.  He felt that my illnesses are at a stable enough place where I didn’t need to stay within the same system if I didn’t want to.

I’ve been waiting several months for this appointment.  My hope was to get in while my old rheum was still practicing, but that didn’t happen.

So finally, the appointment was yesterday.  I went in feeling very prepared.  I had a notecard with my current medications and a notecard with my past medications.  I had a list of hospitalizations and procedures.  And I had a list of current issues that I wanted to make sure I touched on.    

I wasn’t prepared.  Not by a long shot.

This appointment felt eerily similar to my first appointment with my old rheum.

Questions being thrown at me rapid fire.  Asking me why I had listened to my previous doctors, all the while expecting that I am going to listen to everything this new doctor is telling me. 

It felt the same.  Almost.

Except that back nine years ago, I was on a quest for answers.  And now, this one appointment has seemingly refuted or called into question everything that, that appointment nine years ago sought to make clear.

That I thought was clear.  That I had accepted as given.  That I had accepted as my life.    

This appointment was 50,000 times worse because this doctor refuted the last nine years of my life.  Like it’s a lie.  Like it’s some kind of joke that I haplessly fell for.  Nine years. 

Nine years of experience can’t be wrong, can it? 

I know how I felt then.  I know how I feel now.  I know that I’ve been on a lot of medications that did not work.  And I know I am currently on a regimen that is keeping me feeling reasonably well. 

Basically this new doctor is saying that I may have lupus and RA, but I may not.  And that she is 100% sure – from NOT looking at my records, not having any current labs or x-rays – that I have fibromyalgia.  But as for the rest, it’s up in the air right now.

So if I don’t have lupus and RA, how does one explain why the medications I’m currently on have worked and have made me feel better?  Clearly it’s not just a placebo effect, that the very act of taking pills makes me feel better.  Because I’ve been on plenty of medications that have made me feel far worse.    

It’s not like being told you have cancer and then someone saying that, actually, you don’t.  That is probably the kind of news that most people in that situation would be glad to hear.

It’s not as if lupus and RA are small potatoes.  I would love not to have these illnesses, or any illnesses at all, for that matter.  But I do.  And I’ve been working within the confines of these diseases for nine years. 

Everything makes as much sense as it seems life ever makes with lupus and RA.

I know who I am with these illnesses.  I’ve accepted the life I will have because of these illnesses.  In many ways, I am who I am today because of these illnesses. 

Take that away, and who am I?  I don’t know.  The hurt and confusion that I’m experiencing right now is deep. 

It’s not like the things this doctor is saying click and make sense, and I’m finally seeing everything clearly for the first time in nine years.  In fact, for the first time in nine years, since I was diagnosed, I feel the way I felt before I had a diagnosis, before I had a name and diagnostic code to slap on myself.  I feel lost and scared.

I’ve felt lucky that I had labels to put on my diseases and that I had concrete evidence for having those diseases.  Is it possible that my lupus and RA are in clinical remission, but I’ve developed fibromyalgia secondary to that?  It wouldn’t surprise me, if, after spending so much time in pain, that my body misreads the pain signals and creates pain even when it’s not actually manifesting in my organs and joints. 

But to say that I don’t have lupus and RA at all and that I never actually did?  I truly don’t know what to say to that.  It’s incomprehensible.    

I’ve built the last nine years of my life around these illnesses, and for that to be taken away?  It’s unexplainable.  It’s devastating.

I’m not a science experiment.  You can’t just act as if what I’m telling you and what I’ve experienced doesn’t matter.  I know my body better than some doctor that I’ve never seen before and who literally knows nothing about my history. 

So maybe at our next encounter, maybe I will stand up and fight harder.  But I was so taken aback, so crushed, that all I could really do is sit there and shake my head.  Like is this really happening? 

I got beat down.  And I slowly have to get back up.  I’m trying to convince myself that no matter what, I belong in and to the autoimmune disease community and that all of the work and advocacy I have done over the last nine years matters.  And it breaks my heart to think that, that might not be the case.    

The worst part of the whole interaction was that there was no care or concern.  It wasn’t that this doctor seemed genuinely concerned about me being on medication that I don’t need to be on or that I had been treated unsuccessfully for two diseases for nine years and now it was time to find answers.  It seemed like she just wants to be right.

And I’m not convinced that she is.

And I have to wonder about her end game.  Does she want me to go off of my meds to see what happens and how I and my labs look without my current medications?  I don’t think I will be functional for a week without them.  I’m not sure I’d even be functional without them for more than a day.  

Maybe it’s too soon to be writing this post.  None of the labs or x-rays are back.  But I had to get it out.  I had to turn to the one place that I have documented everything since this journey began nine years ago. 

I think part of the most insulting thing is that when I was leaving, she handed me three brochures created by the Arthritis Foundation – one for lupus, one for RA, and one for fibromyalgia.  I will read them, cover to cover, only so that I can note down all of the symptoms that I have to prove a point.

But I don’t need them.  And I don’t deserve to be handed them as some consolation prize.  I’ve been doing this for nine years.  It’s insulting that that’s the impression she got of my knowledge of my own illnesses.    

But when your bedside manner paralyzes a patient and takes them back to where they were when they had no clue what lupus was and thought arthritis only happened to old people, that’s a problem.  When you take someone who is stalwart at advocating for others and cause them not to be able to advocate for themselves, that’s a problem.  And honestly, that’s on her, not me.  So let’s get one thing straight.  I am not that scared 22 year old that I was when I was diagnosed.  I’m a stronger, better person than I was then.  And I need to muster my strength because apparently, I’m literally and figuratively just getting started.  

(I had originally planned after the appointment to try my hand at vlogging, but that’s not happening because I would just be a hot, crying mess)