Wednesday, October 31, 2012

Things That Medication Can’t Cure

Well, since my month-long flare that lasted from the middle of August to the middle of September, I feel like I’ve been on the upswing.  

Right now, I am not on many heavy-duty meds, although my rheum and I have been toying with the possibility of daily low-dose prednisone.

I can’t really explain exactly what is going on right now in terms of my illnesses.  On the one hand, it’s great that I seem to have gotten a reprieve.  But on the other hand, it’s a little scary.  I can tell that this is the calm before the storm, especially because the next few months are going to be insanely busy.  More about that in a bit.  But back to the way I’ve been feeling.

Yesterday, for instance, I woke up with a headache, feeling nauseous and dizzy, and feeling very overheated and like my blood pressure was low. (And the headache is still there this morning…)

I get this feeling pretty regularly, as if my bodily systems can’t really control themselves.  I feel plastered to a wall.  Yeah, it’s that feeling.

I had things I had to do in the morning, so I did what I had to do while the way I was feeling lasted for several hours.  I decided that since I was feeling better, I would go to kickboxing.   

My instructor said this was the best week I’ve had since the Humira craziness and the flare. 
But then I bottomed out again, and couldn’t wait to get home.  My head started hurting, and it’s just that general feeling of being unwell that reminds you that you aren’t actually well in the “normal” people sense of the word.

And it’s the crazy, unpredictable cycling through moments of feeling bad to moments of feeling good, that have been one of the biggest problems for me since I got sick. 

It’s hard to make plans when you feel great one minute, terrible the next, and better the next.  And this could happen multiple times an hour, day, week, month…

I can tell you what part of this is.  Rain be damned.  Whenever there are low-lying clouds and a change in barometric pressure, I feel it in my head and behind my eyes.  Even if my joints aren’t screaming, this screams RA having a field day.  As if it being cold and gray isn’t depressing enough…

And there’s something else.  I’m stressed out.  Like really.  There’s no way around it.

Between November and December, I’ll be traveling to New York on two separate occasions.  And these are both trips in which I will have to be at the top of my game.  

I’m trying to teach, write a quality dissertation, and plan for my future.

I can feel how an overactive, unquiet mind can make an unquiet body even more riled up. 

I’m also trying to take advantage of mostly feeling good to get things done, but don’t want to overdue it.  Although that seems impossible because the mind-numbing fatigue has crept in again, and my body forces me to crash.

And these are things that can’t really be helped by medication.  Medication can’t really control the weather or mitigate its effects, it can’t control my stress level, and it can’t really break through the fatigue. 

So I’m okay with being mostly medication-less for now because I’m not sure how much it would help, anyway.  But I’m not sure how long it will last…

Wednesday, October 17, 2012

Lupus And RA Deficit, And Finding A Treatment That Works

Lately, I’m starting at a deficit.  I don’t wake up feeling energized and refreshed, even when I sleep for 10 or 12 hours. 

My boyfriend has made the point that I’m not a morning person.

That hasn’t always been the case.

I used to be a morning person, a late night person, pretty much an any-time-of-day person.  That was before I got sick. 

Now, when I wake up stiff and in pain, and it takes me time to get going, it’s my arthritis that’s talking, not my personality.

When I was in the midst of the latest flare I had, I wished that I could just go to sleep and wake up when the flare was over.

But there’s so much I would miss.

And the thought of sleeping my life away is scary and depressing.

Sometimes you do have to drag yourself out of bed and will yourself to face the day.  I get that.  And sometimes you feel better after you do, but sometimes that’s just totally impossible.

My flare seems to have abated, which means that it looks like Humira caused my lupus to flare.  Which means that I am off Humira for good, and it’s back to the drawing board.

We knew from the beginning that one of the side-effects of Humira is a lupus-like syndrome.  This worried me from the start, since I already have lupus.  And we should have worried, because that’s exactly what it did to me.

I ran into my rheumatologist the other day.  I had been meaning to e-mail him, but hadn’t got around to it.  He suggested that for sure we go back to low-dose daily Prednisone. 

He also suggested adding Tacrolimus to my treatment regimen.  I did some looking around.  Most of the articles about Tacrolimus and RA, and the few on lupus, are all relatively recent, within the last three years.

I’m not convinced.  This drug started out as an anti-organ rejection drug – like CellCept, which I was on several years ago – has been used to treat colitis, and is now being used for people with RA.  The safety and efficacy, from what I read on PubMed, is mixed. 

I wish this was an easy decision, an open-and-shut case.  But it’s not.  The way I’m feeling right now, I could live with this.  On the other hand, I get tired a lot more easily than before; I get winded from walking up three flights of stairs to my apartment.  There are subtle changes I see that don’t make me happy.  I’m not back to where I was pre-Humira or pre-Humira-induced lupus flare.  And that’s frustrating.  It’s also getting colder, and the winter always does a number on my joint pain and mobility. 

This is really the first time that I’ve had a lot of questions after reading about a treatment.  Because while we can’t plan for the things we don’t know about yet, we can plan, and should be vigilant about, the things we do. 

I worry that my chronically elevated liver enzymes, which my PCP recently postulated may be autoimmune hepatitis, my ongoing gyno issues, and the fact that I would like to have a child someday, are all making me reason against Tacrolimus.

I feel like before I start TAC, I need to see a liver specialist, talk to my PCP about my gyno issues, and see if I can meet with a high-risk obstetrician or genetic counselor to talk about what we would be looking at if I begin TAC sometime in the next few months. 

As much as I appreciate my rheumatologist for all that he does for me, he hasn’t been very good at approaching the “How will this impact my future fertility?” question.  He seems to think we should only factor it in when it isn’t hypothetical anymore.  But it’s not.  It’s not a question of if, but when.  And it is also something that I really care about. 

Maybe it would be different if the situation was “take this or you die,” but that’s not the case right now.  And I hope it never is.

Is it bad that the thought of daily Prednisone gives me nightmares?  I’ve always said that I wouldn’t let fear get in the way of my treatment. 

So I’ll say it again.  I’m torn.  Go back to the drawing board and experiment with a new med or tough it out for the next few months and see if I can make it on my own? 

I could tell by the look on my rheum’s face that he has doubts, too.  And that concerns me more than anything else.

I’ve realized lately that I have to pick my battles and commitments.  I can’t do everything.

There are some really promising things happening in my life right now, and while I would love to focus on the good, I am filled with anxiety about the future.  I wish there was a clear-cut answer here.  I wish I knew which decision to make that would be the most efficacious. 

On the one hand, I won’t know if I don’t try.  On the other hand, though, what if I am putting myself at risk for worse things than what I am facing right now? 

And I appreciate so much that my mom is doing some of her own research on TAC, and that my boyfriend says that he will support whatever decision I make.  My health has to come first, but in this case I don’t really know if that means starting TAC or not, especially someone who can’t be on Methotrexate, like me, and cannot be on a biologic, either.

If anyone has heard about Tacrolimus, or on the off chance that you’ve taken it, please, please, please comment or e-mail me.  I would love to hear from someone who has been on it successfully for RA.    

Thursday, October 11, 2012

From Bad To Worse: My Worst Blood Draw Experience Ever, Ever

In trying to get to the bottom of my recent flare, I saw my PCP earlier this week and she ordered a bunch of labs.

It seems like I have a lot of issues when it comes to the student health center’s lab techs drawing my blood, but I didn’t really have a choice in the matter.

So I went to the lab, and of course, horror ensued. 

The first stick was a foreshadowing of things to come.  At first nothing came out, then the tech totally blew the vein and promptly a dark, red pool of blood spilled out onto my arm.

“Now it decides to bleed?” says the lab tech.

Really?  Really?    

Normally, each lab tech is only allowed to stick you twice, but for some reason, this particular tech decided to go on a personal crusade, hell-bent on taking my blood.  She ended up sticking me four times.

But that’s not before she got the idea that the reason she was having a hard time was because I was dehydrated.  She made me sit there, drink three large glasses of water and three small cans of orange juice.

No one has ever done this to me before.  It was totally ridiculous, especially because all of that drinking made me really cold. 

And there are some things that phlebotomists should just know, like when someone is freezing cold, it is a lot harder to draw their blood.

So that was a great plan.  

Another tech sticks me once, and I think I’m good to go.

But then they call me the next day and say they need another tube of blood.

Of course they do.  As if the day before wasn’t enough.  The carnage from the day before is still fresh.  If you look at my arms, I look like a drug addict. 

And they want more for me.

Well, I’m not feeling particularly generous at the moment; I don’t have any more to give.

The tech that stuck me the fifth time tells me she let the blood clot and didn’t realize it, and it clogged their machine for an hour.  Her fault.  Why is she telling me this?  I don’t want to know. 

So in case you’re keeping score, that’s six sticks for three tubes of blood.

The student health center needs to be called out on their shit.  I am sick of them only being able to deal well with acutely ill 18 to 22 year olds.  It’s not right. 

As I sat there guzzling water and juice, I heard girls coming in and giving their birthdates, 1990, 1991.  They’re easy.  Just on tube.  And anyway, they have underutilized veins.  They aren’t getting blood drawn all the time, like I am.    

To be honest, I don’t think that some of these lab techs could draw blood if you handed them a glass full of blood.

I guess blood is not that useful once it’s outside of your body, but do you ever want to yell and scream at the lab techs, “Hey, that’s mine!  I want that back!” as you watch it sit in the tube and coagulate?

As I’m leaving the lab the second time, the woman at the desk tells me to take a juice, that I deserve it.

A consolation prize for their incompetence, that I ultimately pay for.

Guess what?  I don’t want any f***ing juice.  Why doesn’t anyone understand that?

I just want them to do their jobs and leave me alone.

I really want to file a complaint.  The behavior of these techs, all around, is just incompetent and unprofessional.  But I’m not sure what good it will do.  I don’t want them to see me coming and run the other way.  But I also don’t want to be treated like I’m causing World War III just for a couple lousy tubes of blood. 

As a patient, I want and deserve respect and compassion, both of which are lacking here. 

I’m getting tired of the system, because the system doesn’t work.  No one is using a holistic approach.  Everything is done in isolation of everything and everyone else.       

Monday, October 8, 2012

Sometimes The Truth Is Scarier Than Fiction: A First-Hand Account Of A Medical Mistake

“To err is human; to forgive, divine.”
-         Alexander Pope

 It’s the time of year when people start thinking about immunizations, especially for the flu, and if you’re elderly or chronically ill, potentially a pneumonia vaccine.

I can see in my medical record that it is saying I am due for a pneumonia vaccine, which is typically administered every five years.

But when it comes time, I’m going to refuse it.  Don’t get me wrong, as someone with a crappy immune system, I don’t want to die of something like pneumonia.  But on the other hand, the vaccine almost killed me the first time, so maybe you’ll understand my reluctance. 

It’s also coming on Halloween, and Selena of Oh My Aches And Pains! has asked us to reflect on medical mistakes in the October edition of Patients For A Moment.

I’m transported back to my first hospitalization.  I remember the details like they were yesterday.

My rheumatologist told me to get a pneumonia vaccine.  I’m not sure why I didn’t get at his office, but I got it at the student health center.  When the nurse swabbed my arm, she did it lower than normal, and I commented that I thought it was a weird place for an injection.

She passed off my question like it was no big deal, and gave me the shot.

I went home.  That was Friday afternoon.  On Saturday, I woke up feeling awful, and noticed a red, painful welt the size of a quarter at the injection site.  I slept most of Saturday.  When I got up on Sunday, the quarter size welt had turned into a welt the size of a fist (see picture below). 

I called the doctor on call at the student health center.  First he quizzed me on the fact that I had a flu shot rather than pneumonia shot, and then proceeded to question me about why I had gotten a pneumonia vaccine.  In the end, he told me that what I was experiencing was “normal,” and that if it wasn’t better by Monday, I should come in to the student health clinic to get it checked out.

I happened to be talking to one of my blogger friends who also has lupus, and sent her a picture of my arm from my web cam (see picture below).  She was very concerned, and suggested that I call the rheumatologist on call at the hospital.

I did.  I received a call back from a doctor with a heavy accent.  The only thing I understood was her telling me to get myself to the ER.  And that’s what I did.  By myself, because I thought they’d give me a prescription and I’d be on my way.

But no.  Instead, I ended up in the hospital for three days.  At first, the doctors could not stop the infection from spreading.  By the time I got to the hospital, my entire body hurt, and I had a fever.

When all was said and done, at one point, the infection went from my shoulder to my elbow.  My entire arm was inflamed and felt like it was going to explode at any moment.   

The diagnosis was Cellulitis, an infection in the tissue of my arm, because in reality, the vaccine had been injected into my tissue rather than the muscle.  I was glad that no one had suggested to me at the time that Cellulitis and Necrotizing Fasciitis (Flesh eating disease) have very similar symptoms.  In reality, things could have been a lot worse. 

I was taking CellCept at the time, so I was put into reverse isolation.  (That was the only saving grace of the situation.  I scored a private room.  You have to focus on the positive, right?)

I was at a major research hospital, and they were telling me that they had never seen a vaccine reaction like mine before.

In the back of my mind, I wonder what would have happened if I would have waited until Monday, like the student health clinic suggested.  Chances are, I may not be alive today.

And that’s profoundly scary.

The student health center refused to take responsibility for what happened.  One nurse even accused me, telling me that I should never have been told to get the vaccine in the first place.  And the hospital never directly came out and said that the injection was administered incorrectly.  They agreed that the injection site was in a strange place, but they also thought that I was experiencing some sort of allergic reaction, as well. 

Mistakes happen.  All.  The.  Time.  We are human.  But medical mistakes can be deadly, even if what caused it seemed so innocuous to begin with.

Like getting an immunization at the urging of your physician to protect you from an infection that could be deadly to someone with a compromised immune system. 

According to an article put out by the Institute Of Medicine (1999), “At least 44,000 people, and perhaps as many as 98,000 people, die in hospitals each year as a result of medical errors that could have been prevented…Even using the lower estimate, preventable medical errors in hospitals exceed attributable deaths to such feared threats as motor-vehicle wrecks, breast cancer, and AIDS.”

They define four main types of error categories: Diagnostic, Treatment, Preventive, and Other (IOM 1999).  In a study of family practices (outside the hospital setting), five types of errors were identified: Prescription errors, Laboratory errors, Filing system errors, Dispensing errors, and errors in responding to abnormal lab results (Dovey, et al. 2003).

Patients are not the only ones impacted by medical errors.  Medical professionals are also impacted.  Trust in the medical system goes down.  And so does morale.

The IOM estimates that these errors cost hospitals nationwide between $17 and $29 billion a year.

And medical errors, specifically preventable ones, go directly against the Hippocratic Oath, “First do no harm.” 

Sometimes the truth is scarier than fiction.

I never imagined that something like this could happen to me.  But it did.

I’m also lucky that I made it through going to the emergency room by myself.  But I truly thought that I’d be in and out relatively quickly.  I’m lucky, because as the infection spread and I got sicker, the clarity of the details of my story deteriorated.  Thankfully, there had been enough documentation in the process that this didn’t affect my care or treatment.

If you have any type of negative reaction from a vaccine, regardless of how minor, you should visit, and file a report with the Vaccine Adverse Event Reporting System (VAERS).  You should also make sure that you read the vaccine information sheet that is provided when receiving any vaccination. 

VAERS receives 30,000 reports annually, of which 13% are classified as serious, meaning they have lead to disability, hospitalization, life-threatening illness, or death.

I think the best piece of advice I can give is to follow your intuition as a patient.  Ultimately, I was right that the vaccine was being given in a weird place.  Yes, medical professionals are supposed to know what they are doing, and what is best for the patient, but in reality, this doesn’t always translate.

And if you haven’t been on the receiving end of a medical mistake, be grateful.  You’re one of the lucky ones.


Dovey, S., Phillips R., Green L., and Fryer G.  2003.  “Types of Medical Errors Commonly Reported by Family Physicians.  Graham Center One-Pager #16.

Institute of Medicine.  1999.  “To Err is Human: Building a Safer Health System.”