Patients Rights Are Human Rights

One of the most trying occurrences during my recent health crisis has been the attitudes and behaviors of some of the medical professionals I have encountered.  While technically, this is nothing new, the degree and frequency with which it has been occurring lately has been incredibly frustrating. 

I went to the student health center for a rogue yeast infection.  It was hard for me to tell what it was at the time because it had gotten so bad, with no obvious sign of improving.  I usually avoid walk-in at the student health center, but in this case, I didn’t feel that I really had the option of waiting to get an appointment.

I have never felt so unfairly judged in my entire life.  I was told that the doctor hadn’t bothered to look at my chart because it was “too thick.”  Then I was refused oral antibiotics because it was deemed that I’m “on too many oral medications already.”  This meant, as many of you with immune system problems know, that I suffered with something for an additional two weeks, when, had I been given oral antibiotics, probably would have markedly improved in about two days.

The reason I didn’t say anything at the time is because I was totally in shock by the treatment (or lack thereof) that I received.  And I was deeply hurt.  I filed a complaint with the student health center, but I guarantee nothing will be done.   

And if I had a dollar for every time a phlebotomist asks if I can bend my elbow any straighter, I’d be so f***ing rich.  I’m so sick of it.  I have arthritis, so no, I can’t bend my elbow any straighter when getting blood drawn.

I tried to see if some note could be added with my information, so that this is something that lab techs will know ahead of time.  But I was told that there’s really no way for them to do that.   

And my veins.  Everyone has a complaint about my veins.

And when my rheum’s office called to tell me I could go back on MTX, the nurse who called left me a message, with my new dose: the oral dose and not the injectable dose.  She left me a message, and I was told to call and let her know I understood her instructions.  And I confirmed what the injectable dose should be.  And the response from her was, “Sorry.  I guess I should have looked at your chart.”

Here in lies the problem.  I have a chart for a reason.  I know it’s four inches thick.  I’m well aware.  And I might just hit the next medical person who sasses me about it over the head with it. 

Ultimately, I don’t feel bad for these people.  I’m sorry if through things I can’t control, your job is made more difficult.  But I don’t feel bad for you.  You’re not the one going through all these things.  I am.  And it is made all the more difficult by me being treated like a leper.  An enigma.  A pariah.  A drain on the system.  A complicated patient. 

It’s my chart, my arms, my veins, my everything.  And when I’m nothing but nice to you, is it so much to ask to be treated with the dignity, respect, and kindness I deserve?  Not just as a patient, but as a human being.

Isn’t it my right as a patient to be treated like a human being?

It’s amazing how quickly you can go from being a human being to being a patient.  And while the treatment should be the same regardless, it’s clearly not. 

There just isn’t room in the system for people like me, people under 40 years old who have significant health problems.  Nobody wants to deal with us.  So they treat us like shit. 

I don’t want the ER to be the first line of defense, but student health is exasperating, to say the least, and my specialists at the hospital are all totally overloaded.

And the bottom line is that doctors, when they need medical attention, aren’t treated this way.  I’ve watched many a time, waiting for my own appointments, where the red carpet is basically rolled out for doctors.   

It’s good to know that there is a Patient’s Bill of Rights.  But it focuses mainly on insurance issues.  It goes nowhere toward addressing the issues of climate that exist for patients in the medical setting. 

Maybe I’ve spent too much time in the medical arena in the last few years, and more specifically, in the last few months, but it doesn’t look like that is going to change any time soon. 

So what do you do when no one will listen to you?  You can fight for yourself to an inch of your life, and get nowhere.  But I don’t want to fight.  I just want to live.

 

Losing Ground, But Gaining Strength

The last two months have been chaotic, to say the least.  I’ve had a doctor’s appointment, blood draw, or other procedure every week for the last two months.  It has been physically and emotionally draining. 

That’s why I haven’t been blogging lately.  I didn’t want to write about it until some of these things were resolved.

I was at a point where I felt like my rheum and I had finally gotten ahead of things, that I was on a medication regimen that was working, and that I was finally over the hump of disease overtaking my life.

And now we’re back to the way life used to be.

It started with routine blood work that showed abnormal liver levels, followed by more routine blood work that showed even higher liver levels.  So I was taken off of MTX for two weeks, and then had my labs redrawn.  The levels finally returned to normal.  So I am back on MTX by injection, but a lower dose.  And I have to get my labs rechecked next week.  Hopefully the labs will stay normal.  If not, I might have to get off MTX for good.

And as I discovered over the few weeks I was off MTX, it was murder.  My body lapsed back into a state that I hadn’t experienced in a while.

Kickboxing was totally out for me.  When I went home to visit my family, I could barely get into my mom’s Honda CRV.    

I didn’t miss the hip pain, the feeling of bone against bone, the fatigue, the random bouts of nausea. 

And then there was my yearly gyno exam.  The reason that I am so religious about getting it done is because it is normally the one thing that checks out fine.  But not this time.  I received a call from my gyno’s office telling me my pap smear came back abnormal. 

Have you heard the one where they squirt vinegar on your cervix? 

It’s called a colposcopy, and it sucks!

To be honest, pain is relative.  Had I not been through a lot of the things that I have over the past few years, I may have thought it was the worst thing ever.  The colposcopy was more emotionally trying than physically, although it was by no means easy physically.  They took two biopsies of my cervix.  And they couldn’t get one of the biopsy sites to stop bleeding.  Then there was the recovery from it, which is scary, when you’re in uncharted territory.

Thankfully, after a stressful week of waiting for results, I have been diagnosed with cervical polyps.  I will be meeting with my primary care doctor next week to get some further information.  But from what it sounds like, I will have to repeat the pap and colposcopy in six months. 

Over the last few weeks, I have felt like I’m drowning.

I no longer feel two steps or even one step ahead.  I feel a thousand feet behind.    

I recently saw the movie, “Extreme Loud and Incredibly Close” (great movie but probably one of the saddest I’ve ever seen), and I feel like Oskar, when he’s stream-of- consciousness freaking out about all the potential dangers that exist in the world.

Was the yeast infection from hell a month ago to blame for my abnormal pap results?  Was that misdiagnosed?  How can I have an abnormal pap when I feel like all I do is go to doctors?  After all the blood work, how can I have anything wrong with me that hasn’t already been figured out?

Enough already! 

I feel like there’s not much more I can handle.

How much of myself am I going to have to give away in the name of health?  I’ve had my colon biopsied (twice!) and my cervix biopsied.   I’ve had blood taken out and medicine injected in. 

Now realizing what a reprieve I had for a few months, I want that reprieve back.  Things were basically stable.  I wasn’t in horrible pain all the time, my overall symptoms were less pronounced, my mobility was relatively good, and I wasn’t being attacked by opportunistic infections and abnormal lab results.  That was nice.  While it lasted.  I want that back.  I need that back. 

I almost felt…dare I say…normal. 

But now I feel the total opposite of that.  

And there’s not an immediate reprieve.  I have to have labs redrawn in a week and a half to make sure my liver levels haven’t gone up again.  I also have an appointment in about 10 days with a neurologist, to see if the headaches and dizzy spells I’ve been having are lupus/RA-related or the result of something else.

I’d like to say: Don’t get Lupus.  Don’t get Rheumatoid Arthritis.  Don’t have an abnormal pap smear.  But these are things that we can’t really control.

 I know there are many out there in the “no meds camp.”  However, right now, my diseases are controlled with meds – well – with the right ones, when I’m on them.  Do I hope one day I may not need the meds to feel disease free?  Absolutely.  But right now, I do.  And for the first time, giving myself MTX injections makes me feel in control.  I finally view my once-weekly injection as a key to promoting and furthering my health.

Being off of it for two weeks, and seeing the decline into feeling unwell, I was so desperate.  I’ve never wanted to give myself a shot more.

The last few months have been really trying, physically and emotionally.  I feel like I’ve lost some ground.  But I feel like I’ve gained strength.  I’ve been under a lot of stress, though.  And I wish I could find a relaxed state.  I wish I could achieve internal homeostasis.  I need balance. 

Because while I might not be able to control my illnesses, I can control my attitude.  Right now, I am feeling grateful that things aren’t worse than they are.  But I really do need a break.  There’s always something, and I am getting pretty sick of it.  I am trying to stay positive.  What doesn't kill us makes us stronger, right?