Vampire Calling

Count 'em. 12 vials!

It’s no secret that I’ve referred to many doctors and their staff as vampires.  It started the Summer of 1998, when I was sent to a rheumatologist to rule out a Lupus diagnosis as a cause of my daily migraines at the time and abnormally high ANA (anti-nuclear antibodies) levels.  They took a total of 7 vials that day.  It was a big deal to me because I hate needles.  If anyone ever claims I died of an overdose of some kind of drug injects, call the police and scream foul play because there is no way in Hell I would ever do that to myself.

This needle aversion started with those fun immunization shots when I was little.  I don’t remember which one, I just remember how much it hurt.  Years later, I had to have a preventative shot when my dad came down with Hepatitis B.  That wasn’t very pretty either.  I blamed my dad for that one.  Even if he couldn’t help that he had it.   That same Summer of 1998, I was also sent for an EMG (electromyography) because I was having weakness in my arm and leg on one side of my body.   The test measures activity of the muscles by use of a needle and a small electrical current.  Well, the neurologist who did the test had a bad bedside manner and I started tearing up when he was having me move muscles with the needle sticking in me, causing a lot of pain.  The fist I made wasn’t good enough for him and he sternly told me to make a fist again.  If I hadn’t been in so much pain, I probably would have told him off right then.  Instead, I attempted to make a fist again.  I found out later that this doctor is one of the leading neurologists in Louisville.  I would never recommend him to anyone.  I even recounted this to the last neurologist to do an EMG on me and he was surprised.  I have had 2 EMGs since that one for unrelated reasons and had significant anxiety before each of them.  Not just because of the experience during the EMG, but afterwards, as well.  I was crying when I walked out the door, which got Chaz upset.  Thankfully, he was with me because my right arm and leg were even weaker and I had trouble using either of them the rest of the day.  The other 2 EMGs were significantly less painful and did not leave me feeling any weaker than when I walked in.  No tears leaving either.  But, I made sure Chaz was with me for those just in case.

When my allergist in Louisville told me I should start getting allergy shots because my allergies were so bad that I would have regular sinus infections and debilitating sinus headaches (which triggered a migraine), I said no.  Poke someone with a needle on a regular basis who has a disdain for them?  No, thank you.

I changed my mind after one of those debilitating headaches that was coupled with swelling on one side of my face.  It had me in tears until it stopped.  I thought maybe I could treat the allergy shots like exposure therapy.  Not so much it would seem.  I never had a regular nurse giving me my shots.  They were all different.  Some I couldn’t even feel the needle and others I had to do even deeper breathing because it felt like they punched me rather than stuck me with a needle.

Then came the advent of seeing a Naturopath who does acupuncture, too.  This meant several to many needles being stuck in various places of my body and staying there for 10 minutes.  I’ve been getting acupuncture for 5 years now and I would highly recommend it for anyone.  But, I still don’t like needles.   Even when my doctor is setting the acupuncture needles, I have to still take deep breaths.

With all that needle aversion, blood work is definitely not my favorite thing.  Mostly because many people tell me they can’t find my veins in both of my arms.  It is common to have my hand used for an IV line or for a blood draw.  I never know if the vampire taking my blood is actually going to poke around or not.  Which is why I was having a bit of anxiety on Monday when I was sitting, waiting for the vampires to take more blood to get to the bottom of my low platelet count.  The Hematologist also wanted to run tests on why my anemia is not improving with iron supplements.  I was watching the nurse pull out vial after vial while looking over four sheets to make sure she was pulling the right ones.  My eyes got bigger and bigger as the line of vials got longer.  I think the only thing that helped me from completely freaking out right then and there was the fact that the nurse and I were having a conversation.  I’m not used to that when having my blood drawn.

I counted 12 vials before she started.  I never look down at the line when my blood is drawn.  So, I was looking straight ahead when she got started.  And for the first time, I didn’t even feel the needle.  She got right in there without having to tap my arm over and over again to find the vein.  I asked her if she could do all my blood draws from now on and proceeded to tell her how people always have to poke around and can never find my veins.  She was shocked.  “Really?  You have 4 good veins.”  Then she explained how they are used to doing blood draws from people whose veins are truly shot from chemo and radiation treatments.  They have to be good.  We then discussed the amount of blood she took, which she said was equal to a quarter of a cup.  She and the other nurse told me their record is 21 vials and that people have gotten up after 19 vials and left without a problem.

When I first counted the vials, my thought was, Vampires – 12, Debi – 0.  But, as I was leaving the office I realized I never freaked out.  I didn’t even have the usual start of panic I normally get before a blood draw.  I walked out without feeling I needed sugar or water before doing so.  I still have a bruise from it, but I’ve been bruising easily again lately, so that was expected.  I left feeling good about the experience and feeling good about myself.  That’s a win for me in my books no matter how much the vampires took.

No One Knows You Better Than You

With some of my favorite people on Earth because I pushed my previous doctor and self-advocated.

I want to continue where I left off in my last post.  After I mention one symptom I forgot.  Vertigo.  Other than one incident last year thanks to a nasty sinus infection, I have not had vertigo in almost 2 years.  This particular symptom plagued me since college.  I never knew when or where it would hit.  One moment I’m doing something totally inane and the next the entire world around me is spinning and I’m fighting to focus.  Thankfully, I never passed out from it.

Someone asked me about testing.  I’m not well versed on all the tests but I know there are different blood, stool and genetic testing for Celiac and gluten sensitivity.  These tests look for specific antibodies that are present when gluten is wreaking havoc in our bodies.  There are also biopsies of the small intestines.  These look for the damage done to the vili from the gluten.  Some doctors still consider the biopsy the gold standard and will not give a diagnosis if it is negative.  There are many progressive doctors who specialize in Celiac and gluten sensitivity that want to see this change.   There are gene tests, too, that check for the proteins HLA-DQ2 and HLA-DQ8.

Since I was gluten-free for so long, all tests except the gene testing will be negative for me because there is no gluten in my system and my body has been healing.  My previous doctor and my current doctor were fine with leaving things as they are.  I think all doctors should be okay with that.  That is not the case.  Some doctors out there want you to go back on gluten in order to test you.  Not only that, there seems to be disagreement on how long you should be back on gluten in order for tests to be accurate.  Can you say malpractice?  This is nothing more than human experimentation.  Only we know the results before the doctors do.  I find it inexcusable for any doctor to think this is an option.  My current doctor knows there is no way in this world that I will willingly consume gluten for an undetermined amount of time just for a test result.  We should not accept doctors that force us into do anything harmful to our bodies just for the sake of a test result.  Here’s your test result. I’m 23 months gluten-free and I feel better than I have my entire life.

Doctors serve at our pleasure, not the other way around.  We resign ourselves to mediocre care because we grew up thinking the doctor knows best.  The truth is, doctors don’t know everything.  Yes, they have the medical degree and the training.  However, no one knows our bodies better than ourselves.  We know when something is wrong despite what doctors say the test results say.  My previous doctor was very open about saying, “I don’t know” when he really didn’t know rather than try to make something up.  He was also a good listener.  He would listen to me and what I was saying rather than try to formulate all the questions he was going to ask while I was talking.  He paid attention to my chart and remembered things.  He understood that when I sat on the chair and told him I want answers, that I meant it.  My thyroid levels were all within normal limits (WNL), yet I knew something was still off and the continued elevated ANA (anti-nuclear antibodies) levels worried me.  He calmly ordered more tests and sent me to specialists rather than tell me it was all in my head.  It is exactly why he was my doctor for so long.

We should never accept sub-par treatment from our doctors.  Never.  They have a job because we choose to go to see them.  They are supposed to listen to us and treat us based on what we want, not act like supreme beings that know all and we know nothing.  We can fire them anytime we want.  This is exactly what I did with my doctor before my previous doctor.  When he started to send me for tests that I already went through, I knew it was time to find another doctor.   You have to stand up for yourself.  No one else is going to do it for you.  Calmly tell your doctor what you need/want or about what you disagree with.  Persist in stating what you need/want if they do not listen.  If they refuse to listen or insist on something that you feel is harmful, find a new doctor.   Ask your friends for recommendations.  This is how I found my previous doctor.  Do research.  I found my Naturopath after seeing his business card on a table at a little deli near his office.  I looked him up online before deciding to call.

If you are fed up with your medical care, start asserting yourself and your position in that doctor’s life.  They can either listen to you and help you or they can be one patient lighter.  Advocacy starts with you.

XX

Me and the phenomenal Stick. Photo effects are thanks to her son. Kinda makes for a cool all natural blur.

Two remarkable chromosomes determine whether we are male or female.  Most of us are either XX or XY.  Some people are born with an extra chromosome.

It’s amazing to look back at Western history and see how far women have come in their place in society.  We still have a ways to go as far as true equality is concerned, but that will come with time.

We are still having to advocate heavily for ourselves as we go to doctor after doctor seeking to figure out what ails us only to be told, “It’s all in your head.”  I’ve never had a doctor tell me that directly, but the partner of my former doctor clearly wanted to say it when I was in for the 4th time in less than a month trying to figure out why the sinus turned respiratory infection wouldn’t get any better after 2 rounds of antibiotics.   “You just started the 2nd round 2 days ago.  I don’t think you’ve given it enough time.”  Yes, I am not a doctor.  I know my body.  I know how antibiotics work and how I feel when I take them.  When I see no difference after 48 hours and I’m having intermittent fevers, I know something is rotten in Denmark.  I was so upset, frustrated, and felt he was just minutes away from telling me, “It’s all in your head.”  I burst into tears in front of him and his PA.  Well that got his attention.   Nothing like a patient getting extremely emotional, right?  Well, that led to some other questions about my mental status.  I nearly yelled, “I’ve been sick for 3 weeks and I’m not getting any better.  I just want to be well!”  I didn’t yell, but I managed to get it out in the midst of my blubbering.  Thankfully, one of those fevers hit me while I was still there and I got real pale.  He took me seriously after his PA confirmed my skin was clammy.  Thank goodness I only had to put up with Dr. Wright’s partners when he was on vacation or it was a Friday and I was really sick.  He had another partner whom I refused to see again after he wouldn’t listen to me.  He had that I’m-the-doctor-so-of-course-I’m-right-and-you’re-wrong attitudes.  When the meds he gave me made me worse I wanted to call him and tell him, “I told you so.”  He’s lucky I’m not that kind of person.

In my journey to recover from my hypothyroid’s effects on my health and then gluten’s effects, I’ve been fortunate that I’ve had doctors treating me that really listen and value my input.  It’s a struggle in Western medicine to get doctor’s to take us seriously.  Especially when there are doctor’s out there who forget that their patients know their body the best.

If you’re having problems with your doctor and there are other doctor’s out there, fire your doctor.  You aren’t legally obligated to keep seeing a doctor if they aren’t giving you good service.  If you had bad service at a restaurant, car dealership, or store would you go back?  I don’t.  We deserve exemplary service from doctors.  We go to them and put our lives in their hands.  We trust them to help us get better.   There is no reason to put up with doctors that treat us like we’re lunatics just because we’re women and they can’t figure out what ails us.  I’d much rather hear, “I don’t know” from them than, “It’s all in your head.”