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Dear Doctor…


Dear Doctor,

I need to be able to trust you.  I am not a healthy patient or I would not need your services.  I need to be treated not only medically, but also with respect and dignity as a patient in your care.  I need to be regarded as a valuable human individual, regardless of my age, gender, ethnicity, financial status, or any other defining characteristics.  I have rights as a patient.

As a patient, my needs come first, not your reputation.  Not your “scores”.  Not your time.  Not your students.  Me.  I am ill… and the honest truth is that when treated well, you could not ask for a better patient than me, because I want to take care of myself.  It’s just that sometimes I can’t do it on your schedule, because your schedule does not exist in my daily life.  Mine does.  What exists in my life is bills (besides the ones from you), and expenses like food, fuel in my car, house payments, all other manner of care items from taking care of my fragile hair down to clipping my toenails that seem to be getting harder to reach each year.  What’s important to me is getting my tires rotated, changing the oil, and wondering what that noise is that is driving me nuts every time I drive somewhere.  Important is trying to keep dishes washed, and make sure I don’t run out of things like drinking water, healthy fresh foods, and basics like bathroom tissue and toothpaste.  It’s critical that I can fill the medications I cannot go without, and get the supplements that keep me feeling reasonably functional.  Those are just the financial stresses (and add into that the unexpected emergencies, and things like dental and eye care that I really can’t afford anyway).  That doesn’t account for what my entire day is like, from waking up feeling beat, and trying to brush my hair without dropping my hairbrush, to worrying about aging parents and growing godchildren that I have so little energy to give time to.  My day… my world… is about all of those things before I even cross the threshold of your office.  You’re a blip on my radar, and yet… I give you undivided attention and time once there.  I deserve the same in return.

I’ll reiterate: As an individual, you could not ask for a better patient.  One of you once told me not to expect.  Not to expect much recovery.  Not to expect improvement.  They used the word “permanent” (damage), and they were wrong.  So why should I trust anyone now?  Yet… I do try to do so.  I have proven that I am dedicated to taking care of my health (and my heart) by proving that bad prognosis wrong.  By exercising, changing the way that I eat, and taking the right meds and supplements… by doing what I said I would do.  To act like I won’t is an insult, and because of my life which keeps happening when you are not around, I cannot help that sometimes it takes me longer than you wish it would to get some appointments or tests done.  I don’t always have the money.  I used to have great health insurance, by the way, Doc.  I had it covered.  Now… the insurance carrier is the only one that seems to care less than you do.  I pay, and I pay, and I pay… and they don’t pay.  So yes, it takes me time to set aside enough to take care of what YOU want done, and it’s not my fault.  I’m doing the best that I can.  I’m human.  While you are considering that statement about me being human, please realize that my medical needs don’t stop while I’m struggling to meet your personal guidelines of what you think has to happen.  Holding medication refills hostage seems to me to fall into a malpractice category of failure to treat.  That seems to be the new practice too.  “Sorry you can’t afford to see me AND refill your meds, but you have to see me… even though you won’t be able to pay for the refills I will give you after you’ve run in and out of my office several times a year.”  I’d like to hear you just say it that way once to be honest.  Apparently that’s my problem, not yours, so you can’t be bothered to help with it.  I’m doing the best that I can… so, why aren’t you?

By the way, your veneers are great.  You have a beautiful smile.  I’d like to get some work done myself that is concerning so I can chew without pain.  I’m willing to bet I can’t afford your dentist, so I don’t need a referral on that… thanks.  But you.. you look great.

There was a time, Doc… when physicians worked with their patients and listened to their needs as an individual.  Humanity has been shoved into a crate and warehoused.  While I choke on my $45 copay, remembering when it was $25, you’re happily cashing in on the $450 you charge my insurance company and I guess because of that… you think it’s chump change I’m putting out.  That $45 is a tank of gas.  It’s a week of groceries.  It’s my water bill.  It’s some basic and essential need.

I live with a stress-triggered illness.  You and your agenda should not be a source of stress for me.  Your job is to assist me in staying well and reducing stress, but these days it seems like you are working overtime to make my life even more difficult.  Try not to forget that when I leave your office, I have to go home and recover from the fluorescent lights, exposure to noise and temp changes, and unfamiliar environment, and people poking and prodding and asking intrusive questions, and feeling like a guinea pig… and I started off tired so now I am exhausted.  Believing that you are at least sensitive to how this visit will demolish the rest of my day would help.  I only have enough energy for just so many tasks per day.  Doctor appointments cut into the energy for the next day as well as this one.  That’s a big deal in my world.

In this… I am not unique.  Everyone needs a care provider that actually provides care, and that they can trust, and on a daily basis I am seeing less and less provision for needs.  Stop blaming “guidelines” and insurance companies and take personal responsibility for your own actions, Doc.  Compassion and respect don’t cost you a dime and they should be part of your routine.

Signed,
The 1.5 Million Lupus patients in the United States

 

 

I Don’t THINK So (SNRB)


I thought I had my foot in the door finally.  My primary seemed to understand my needs and he was setting me up for a Nerve Root Block.  It took a week for the medical group authorization, and then it got faxed after the following weekend to the lab.  I was told on Monday I’d hear something in 2 days.  On Thurdsday I decided since it was the FOURTH day of the week it warranted another call.  Oh they had it and would schedule me alright….

Here’s where we have a problem.  My Dr KNOWS I am a Fibromyalgia patient.  He knows that I’ve been through a lot of pain and been mistreated by prior physicians.  He knows I have anxiety disorder with panic attacks, and white coat hypertension.  He knows I’m traumatized.  I made it clear I wanted to be sure this was done in a hospital setting under fluoroscope, and he said oh yes of course….  but what never occured to me was that any location doing this procedure would have a policy against using anything other than Local anesthetic.  Dear God.  Having been with someone going through this procedure twice previously, my familiarity with it was of COURSE we’ll give you light sedation so you don’t feel pain and become distressed.  In fact, everything I read about it recently indicates they can even give you Level 2/Twilight so that you usually don’t even remember the event.  Not these people, nooooo!  My jaw dropped while I was talking to her on the phone and I felt nauseous.  I said Yeah…. I’ll get back to you… (not!), and hung up.  What to do now?  Like they really need a panic stricken patient in their O.R., and like I really need that kind of stress.  Being that we already know I have a heart condition, you would think their priority would be what everyone keeps telling me this medical group is foremost concerned with – alleviating suffering.  This should include the patient’s mental and emotional status without question.  Apparently they think all patients are created equal.

I won’t go into my Dr. Mengele experiences of the past.  Suffice it to say that I’ve had awake procedures that left me traumatized, and I’m well aware of how little a Local anesthetic does for me.  Its a quirk of physiology for some people, and I’ve got it bad.  Dental work is like just asking someone to torture me intentionally.  It’s horrible and I think the next time I have any done I’ll have to ask for sedation for that too… because I’m just not 20 yrs old and I can’t tolerate it anymore.  A person could have a stroke pushing their blood pressure that high.  Honestly, I don’t know what they were thinking with this.

I left a letter for my Dr.  I explained the situation and what’s wrong with it.  All I can do now is wait, but they’ve blown my time frame as I have to travel next month.  I’m pretty sure they won’t remedy this for me before I have to leave and that means a risk for another flare-up while I’m away.  I’m going to have to be extremely careful, and that’s all that I know to do.  I had expressed the importance of watching the calendar on this to him too.  *sigh*  At this point I’ve been dealing with low back and sciatic symptoms for so long that I have to wonder what damage is being done.  Crushed nerves is a bad thing.  The constant pain in my calf over the last year or two tells me there is L1-L2 involvement, not just the L5-S1 they determined from the old xrays 2 yrs ago.  By the Dr’s and my interpretation of pain location, I’ve got 3 sites causing me trouble.  That’s why I ran from the suggestion of doing an SNRB under a local.  Not 1… not 2… 3 injections.  If you’re uninformed and curious about the procedure and the size of those needles, Youtube has some lovely videos.  (Ack!)  I don’t need to be feeling any of that, thanks!  I really hope he refers me to someplace that will treat me as needed without a fuss.

There seems to be a real insensitivity to unique patient needs in medical facilities of late.  When I had a Lipoma removal done (a third attempt and correction of two prior ones that were awful), by a plastic surgeon in Northern CA… he looked rightly horrified at the thought of not putting me under.  He said no way he would do this without me being asleep.  It was scarey being under general anesthesia for the first time, but having done it with great results, I’m all for it now.  Waking up as though I had a nap is far superior to feeling and hearing someone slicing and pulling things out of you, believe me.  Maybe there are a bunch of butch people out there that can hop on the table, take a Local, and let themselves be harpooned without any lasting emotions about it.  Call me a wuss, I don’t care.  I think if I’m paying for care, then my concerns have to be addressed the way I need them to be… not to someone else’s convenience.

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