The #MedicalMystery Tour

Sometimes, medical diagnosis can be fairly easy.

While the requisite description of your symptoms is generally step 1 in the process, personal medical history and family history play a very important role as well.  But once in a while, in this modern age of medicine, there is a test or a scan that can determine with a reasonable degree certainty what it is that ails you.

Sometimes, medical diagnosis is hard.

Description of symptoms is generic - tired, nauseated, feverish.  Personal and family history are not helpful, either because there is genuinely nothing there, or because history is withheld due to lack of knowledge or lack of willingness to disclose. 

Sometimes, it feels impossible.  It's at this point where I've been living life for the past 16 months.

In the law, if you are facing a situation that feels nearly impossible, that you do not have the training, experience, or education to handle (or even the time, patience, or emotional fortitude) you can hire a lawyer.  Sometimes this is challenging because of finances, and I can write a whole separate entry about why lawyers can and should charge high fees, but you hire a lawyer to represent you.  That lawyer literally steps into your shoes for that situation. You go into their office, tell them about your legal problem, and for a fee, your burdens become their burdens and they work to solve your problem. 

Sometimes, your problem is not going to have the solution you wanted.  Maybe you committed a crime and the evidence against you is damming.  Well, then you are probably going to jail.  But that lawyer will still to do everything they can to make sure that the evidence against you is sound, that the conviction against you is only upon legal and competent evidence of your guilt beyond a reasonable doubt, and that the sentence you receive is fair and just.  They are your ally against what may feel like an insurmountable challenge, and they help guide you to the other side.

Medicine does not work this way.  Although we still pay doctors exorbitant fees, they often spend only the minimum amount of time with a patient, concerned only with what pains them at that moment.  While they ask about history, medications, surgeries, etc., they are really just there to solve one problem - the one you came in with.  I am including primary care managers/providers (PCM/PCPs) in this calculus as well - the one provider who should really be the one putting the pieces together. 

In fact, I came in to see my PCM after my ER visit a few weeks ago.  I had woken up in the morning and my hands and arms were tingling, like the pins and needles you get when you are losing/regaining feeling in your foot after you've sat on it for too long, for example.  Thinking maybe this would pass, maybe I just slept wrong, I didn't think anything of it, until 4 hours later when I went to physical therapy and it was still happening.  It lasted about 8 hours that day before it subsided. 

I could not get in to see my PCM that day, but I got in first thing the next day.  I was exhausted, frustrated, and ready to give up. This was not the first numbness and tingling that I had experienced in the previous weeks, and he knew that.  I had been seeing him quite a bit recently for many other issues, and he knew that too.  When I expressed my exhaustion and frustration too him, begging for some insight into what is wrong with me, he assured me that each of my individual issues is being treated (they aren't), and then told me that the matters are probably not related.  He then proceeded to tell me that, despite the tingling and numbness in my legs and feet that had been happening for about a month, and the tingling on the right side of my neck that had been happening for about a week, that what I was experiencing in my arms was probably carpel tunnel syndrome and gave me wrist braces.  Needless to say, I thought that was bullshit and have not been wearing them.

Where the hell is all of this going?   I'm so glad you asked.

Because I cannot go and simply hire a doctor to assume my burdens (unless you know someone, in which case, please PM me), I have to continue to bear them myself.  I have to take charge of my own health care and be my own advocate.  I will research and I will push as if this were a case I was trying to solve.  Because the alternative is to continue to take handfuls of pills every night and hope that someday, someone will care enough about my symptoms to take a step back and look at the bigger picture.  To really do everything they can to try to figure out why I feel so terrible all of the time.  Until then it's just me.

And maybe you.

I am going to blog and post on other social media about my symptoms with the hashtag #medicalmystery.  I've already started doing this, but I'm also going to try to give you some background about my symptoms and when they first started.  If you want to know about any labs or imaging I've had done, I will tell you.  History?  It's yours.  If you have an idea, think I should get something done or talk to a particular person, put it out there.  I am officially crowdsourcing this problem, because I know enough to know that I am not a medical expert by any means, and that knowledge is power.

Thanks for sticking with me through all of this and helping me solve the #medicalmystery.

"So, what medications are you taking?"

In the wake of days of traveling, reintegration back to normal homelife, and 5 consecutive days of migraine, this post had to be put off a bit, but I wanted to share with you an experience that is all to common for me and other Servicemembers, and I suspect people in general.

I've shared on social media a bit about my various medical struggles as of late, and I will share a bit here shortly because I want to shed some light on the massive medical beauracracy that is the military medical system (which isn't all bad, once you figure out how it works), but there is one ongoing problem that continues to baffle me: medical history.  The first issue (I can't even say worst issue) is medications.

On this past Thursday, I had 4 different medical appointments. I had just come back from some significant time out of the area, and I wanted to get as much done as I could before returning to work, so I stacked appointment after appointment on the same day.  The first was a physical therapy assessment - not really many questions about medications, since that's not really what they are there for, but the medical history part was interesting - that's for another day.

The second was with a nephrologist.  For those who are Googling that right now, let me save you the time: that's a doctor who specializes in the kidney. I had no idea that was a thing until I had painful kidney stones that decided not to pass and flare up whenever they feel like.  This was my first appointment at this clinic, and the receptionist had already advised me to bring a medication list (thank you).  I carefully wrote down every medication and supplement that I take including doseage as of that day and brought it with me to my appointment. I gave it to the receptionist when I arrived with the rest of my paperwork as instructed.  I'm such a good patient.

I went back to the exam room when I was called and discussed my pain with the nurse.  Then she asked me one of my least favorite questions ever: "So, what medications are you taking?"  Fortunately, she followed it up with, "Is this list they sent from the base accurate?" and showed me a list she already had.  Of course, it was not, but at that moment, the receptionist walked in with a scanned copy of my beautifully prepared list from that morning.  I decided I liked this nurse a lot when she shared my disgust at how grossly inaccurate the list from the referring facility was.

I understand when you first visit a provider, you need to go through your complete medication list, and you can just provide updates after that.  BUT - this was not what I took issue with.  I got fed up with the medication issue at this visit, when the doctor came in.

Doc comes in with some notes on a 3x5 card.  Oh, good.  He read my chart.  That's not always something that happens.  He sits down at the computer, asks me some questions about my pain, discusses the CT where they found my kidney stones, and asks me, you guessed it: "So, what medications are you taking?"

Are you fucking kidding me, doc?  I went over this with your nurse in this very room 5 minutes ago.

"I just went through all of my medications with the nurse."

"Oh well, what are you taking them for?"

"A lot of things.  Maybe you can list off the medication and I can tell you what it is for."

I was fed up.  This guy had clearly read all of the other things.  Medications are clearly important, so why is it that he could not read this too?  He seemed clearly irritated, but he did exactly that - went through the list his nurse had just made and I told him what the medications and supplements where meant to treat. 

My third appointment was a CT for my foot that I broke almost a year ago and still hurts - more to follow on that another day too, but no medication issue with that one.

Final appointment of the day was my initial intake with a gastroenterologist.  This appointment was on base.  Let me preface this by saying that every prescribed medication I take is prescribed by a military physician and issued by a military pharmacy.  Additionally, in order to get referred to the GI, they asked me that dreaded question, "What medications are you taking?"  They even give you an alleged "medication list" every time you go in to primary care, which I have since stopped even looking at.  When they give you this list, you are supposed to cross out the medications you are no longer taking, and write in the medications, including OTC and supplements, that you are currently taking, so that they can update your record.  I used to do this dilligently, until I realized that no one ever updated the record. Never.  Not once did I see this done.  Nice idea in theory, but never acutally practiced.

So of course, I meet with the GI and he asks me, "So, what medications are you taking?"  Fortunately, I had a copy of the exact list from earlier in the day that was returned to me at the nephrologist that I handed to that doc and he actually, no kidding, updated my medical record!  Right before my eyes. It was amazing.

Why am I going on and on about something that seems kind of dumb?  Several reasons.

1)  It's increadibly dangerous.  We live on base and the nearest ER as the base hosipital.  If these had been emergency situations and the doctors at the base emergency room had been relying on my active medications list to determine how to treat me, they would have been sorely misinformed.  I am clearly not on multiple antidepressants and multiple forms of birth control.  As the nurse at the kidney clinic said "I'm assuming you're not on the pill if you have an IUD."  Duh.  Of course not.  But these are not up to date.  If there is a medication in there that thins my blood for example and one that doesn't, but they treat the same condition, how are they to know what I am taking in an emergency?  This could be life-threatening.

2)  It's frustrating for patients.  I am a high-maintenance patient in the sense that I have a lot of medical stuff going on.  It sucks - it's a lot to keep track of.  If the folks maintaining my records are not doing their job in maintaining an accurate record, then I have to take the extra effort to make sure my record is accurate in order to ensure that I am getting the best treatment so that I get better.  There are clearly measures contemplated for this (the medication list that is handed to me every time I go in to primary care) - if we would just follow through, it seems like we could avoid some unnecessary confusion.

3)  It's frustrating for physicians.  Based on the reactions of the two doctors I encountered on Thursday, it was clear that they also wished that my records were a little more complete than they actually were.  Especially for the doctor who took the time to review the file before I arrived (I am not sure what the GI reviewed before I arrived, but he seemed totally with it when I got there - no complaints), I am sure he would have liked to have had an accurate medication list sent over from the clinic as he was contemplating courses of treatment.

The long and short of it is, it's not that hard to do better.  Of all of my frustrations of the treatment of paitents in our medical system, this is the most minor.  But sometimes, it's the most minor of issues that are the most annoying.  Following through on this simple task could go a long way in improving patient care in very busy and overworked medical facilities.

The "R" Word

There is a word out there that still seems to be generally socially acceptable to use, but deeply offends me, and quite honestly, it has even before I had Autistic children.  I know I used it as a child, just like I used "gay" in a pejorative way, not understanding the true damage that my words were doing.  Sticks and stones and all of that.  But while the use of "gay" or "queer" has fallen out of fashion as a term used to describe something other than a person who is, in fact, gay or queer, the Big R is still being thrown around with reckless abandon among young and old alike.

I have heard it among those of my parents generation, and I'm sure that they are using it in exactly the way that cuts me to my core.  It means something, is bad, something is stupid, something is appalling.  Out of a respect for my elders, I keep my mouth shut.  This is an idea in which I firmly believe and, since it's being used as a colloquialism and not toward someone I love, I am willing to overlook it. 

I have heard it among the "the kids" (yes, as in, what are the kids listening to these days?) who are too often witnesses in courts-martial, paralegals, or other Soldiers that I happen to encounter at various places on post.  To these young people, I will politely correct them and tell them that word is not appropriate to use.  Particularly the Soldiers will respect this, if for no other reason than I outrank them, but I have little confidence that my words make any impact on them, and I suspect that they will go back to throwing around The R Word once I am out of earshot.

Finally, I have heard it used quite casually among my peers.  Yes - educated men and women tossing around the words "retard" and "retarded" as though it were just any other word in the English language.  But it's not.  And let me be perfectly plain here.  They are not using the word (or one of it's variants) in what is probably the only socially acceptable way, which is to say "Cigarettes will retard your growth," or "That jacket is fire retardant."  They are saying "That's retarded," or "He's such a retard."

Un-fucking-acceptable.

With my peers, I feel no need to sensor myself.  I will tell them straight out, don't say that.  It's offensive.  You wouldn't say "You're such a fag," because that's a horrible and socially unacceptable thing to say.  So why is it still acceptable to use The R Word as a pejorative?  I have often been told to "relax," or that it's only offensive to me, or that I shouldn't be so fragile.  This is all a load of crap.  I am a special needs mom - I am anything BUT fragile, bitches.  And it is individuals who continue to perpetuate slang like this, thus fostering an environment in which the next generation perpetuates it, that will someday cause The R Word to be thrown violently in my children's faces, all because someone, somewhere, couldn't think of a better word to express himself.

So, my challenge to you, friends, is to remove The R Word from your vocabulary.  You may not even realize you say it, and maybe you have no ill will in mind.  But for the sake of that friend or loved one you have who loves someone with special needs - or maybe you yourself love someone with special needs - just eliminate the word.  As I said on Blog Inaguration Day, I don't seek to change the world.  But it has to start somewhere.  If everyone reading this eliminates The R Word from their world, and encourages others to do the same, then we can begin the change.

Inaguration Day

Good morning, everyone!

This is the first in what I hope will become a series of blogs about ... hm ... interesting.  I haven't really decided what this blog will actually be about.

I have been on a journey of self-development of sorts lately (and by lately, I mean in the past 15 months or so), and I have learned that the world is a fairly imbalanced place.  There's a significant amount of things going on that I, quite frankly, don't understand.  I am hoping that, by sharing some of these challenges I encounter with my friends and family, aquaintances, collegues, and maybe even total strangers, I can come to comprehend even a little bit that which currently baffles me.

That being said, I don't hope to solve the problems of the world, even if it is just my tiny sliver of the world, with a blog.  That would be hubris.  But sometimes, shedding a little light on the dark places in the world is where it starts.

I am also hoping that, through writing this blog, and sharing with you my thoughts and feelings, I can learn a little more about myself.  I have also learned recently, that I have made myself conform to certain expectations of others in order to fit in to the given environment in which I find myself at the time.  No longer will I be doing that.  It's exhausting and it sets a terrible example for my children.  I remind them at every opportunity how extraordinary they are and that they do not need to conform to anyone's expectations of them, and I need to start practicing what I preach.

So, some of the topics will be heavy: Autism, sexual assault, criminal justice - all things about which I am very passionate.  Some of them will be light: how I think dry shampoo is one of the greatest inventions ever, but makes me feel like a chinchilla being dusted.  Some will be emotional and/or technical commentary on current events: the 14-year-old autistic boy who was taken down by police on suspicion of using drugs (I have both personal and legal insight on that one).  Some will be on my own battles with my health and the various bureaucracies that surround obtaining care for myself and my kids.  And some days, you may just get a picture of a smiling ginger child.

I can't promise how often I will post - I work too hard and travel too much for that.  But if any of this sounds like it might interest you, feel free to read as much or as little as you like, and if anyone out there is reading, I will keep the posts coming.

Caio from the Palazzo for now - more to come soon!