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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

 

 

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Fantastic Little Snowflakes, Each and Every One


Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t!  The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all.  We’re not special.

Here are some remarks I ran into on a popular page this morning that set me off:

I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea. 

[My thought on this is that someone is lying.  You NEED to exercise, and unless you are a quadriplegic, you have no excuses.  It doesn’t matter whether that means just taking a walk, or raising your arms over your head a few times, or wiggling your toes, MOVE YOUR BODY!  If you are sitting around, doing nothing, you’re hurting yourself worse than taking a medication ever could.]


-I refuse to take drugs with their unwanted side effects. I suffer with my pain. Taking drugs to ease my pain will only kill me in another way. Nope will just deal with my pain even when it gets unbearable! 
[Clearly this person has never hit “unbearable”…. I have.]

-I so agree. Pharmaceuticals scare me to death.
[News flash, your heart stopping can kill you too.  Some pharmaceuticals do serve a purpose.]

-You be never had a kidney stone.
[Someone with experience and an intelligent comment.]

-I’ve never had a kidney stone, but I have a dislocated shoulder that destroyed the rotator cuff and has been this way for 12 years, I’ve also broken my back and wrist and the only drug I took was aspirin… and not Bayer as I refuse to support them.
[I didn’t realize we were in the company of such greatness.  I’m not worthy. *bows down*]

You will not get kidney stones, [name omitted], if you are on a healthy diet.
[Well, if that’s not the biggest bunch of hooey I’ve heard all week, I don’t know what is.]


I believe the only medicines we need god gave us is water and vegetables. We don’t need to feed drug companies pocket when all they do, is help kill us with their chemicals.
[Belief is a wonderful thing.  Let me know how that works out for you when your genetics catch up with you, because they get everyone sooner or later.  Birth is a death sentence, and these imperfect bodies DO break down, whether it happens when you are 9 or 90.  It happens.]


The only medicine the cures anything when properly used is antibiotics, the rest of the 250million medications in the Physicians guide only treat symptoms.. Hoping that your body will heal itself before whatever is wrong wears you down.
[I can’t even make a sarcastic remark here because that was so ignorant that it speaks for itself.]


Here is how I finally felt compelled to respond to the stream of ignorance:

[Name omitted] – and the rest of you holier than thou commenters, shame on you.  I AM minimally medicated, and I AM one of those proponents of eating whole foods, anti-inflammatory, avoiding preservatives, and anything else you can think of and I DO THOSE THINGS consistently in my life.  I promote it, I teach my friends about it, I live it without deviation, and it has given me back a lot of my life.

BUT

How dare any of you smart off about chronic illness, not understanding what that life is like?  How dare any of you have an opinion about how someone else needs to handle their issues?  Do what YOU do for YOU and stop being so high and mighty.  Chronic illness, such as LUPUS (which I have, among other things) is not curable by medicine or by how you eat, either one.  It requires a genetic predisposition that you are born with to even develop it in the first place, and it’s not coming from modern “agra”, or “pharma” either one, as the disease existed long before those came onto the scene.  Education is a wonderful thing!  Get some.  Triggers that put rheumatic autoimmune diseases into motion vary, and I will only agree that there are *some* modern conventions that contribute to it, but they did not create it.  In the end, the result is the same.  You have a disease that isn’t going away and can only be managed. I have done pretty darn well for myself too, going from unable to walk in 2006 to I’m out hiking again in 2014.  I am not however a professional athlete, and never will be.  I still have to manage my energy levels, consider how I feel at each given event, week, day, even moment, while I make my decisions about activities.  No one else can do that for me, and no one else can tell me HOW to do those things.  It’s my own responsibility.  It is also my own responsibility to now take a beta blocker because my heart is damaged.  Eating right isn’t going to fix that issue, nor will it make the hereditary palpitations or dysautonomia go away.  It takes *both* a medication and eating right (and knowing how to reduce stresses of all types) to manage that condition.

Some of you act like I should throw my pills in the ocean.  If I do that, I’ll be dead and you won’t have to listen to me scream about this stuff anymore.  I guess you would prefer that.  In the mean time, I will be so crippled up that I won’t be able to walk and possibly not type much and you still won’t have to listen to me.  Is that your goal?  I take Plaquenil (a biologic) to manage my Lupus symptoms because my pain levels were too intolerable.  Let me say this about that… I can take a lot of pain – probably a hell of a lot more than many of you.  I also eat correctly now to deal with inflammation and everything else.  At the end of the day however, some of us just have such severe conditions that we need a little assist.  That is what medicine was always supposed to be.  An assist.  That’s how I utilize it.  Does no one understand “happy medium” anymore?  Anyone?  Anywhere?  Even ancient medicine as in my own culture (Native American) is still medicine and still utilizes chemical compounds from plants.  I have training in that as well, but it’s not sufficient to manage what I live with.  That’s the bottom line.  I enjoy being able to walk.  I enjoy not having my heart stop suddenly.  It’s the little things, eh?

If it’s possible for an individual to entirely eschew medication, then I am always happy for them.  I even have friends with Lupus that have been able to do that – for the most part.  One uses the very occasional pain med when it becomes so unbearable that she cannot even sleep for days on end.  Another is going through a recent flare due to terrible life circumstances, and has had to go back on some other meds TEMPORARILY.  She does not see it as a permanent switch back.  I respect those choices, the same as I respect the choices of those that want to just suffer (though I find it insane), and those that are able to manage without any and feel better, and those that stay on more meds because it is all that has worked for them.  We are all individuals, and all on a path, and all learning, and none of us have a right to turn our noses up at the necessary decisions that others make.  You are not in my shoes.  You do not know my pain.  You do not know how my own body and mind process that pain.  It is the height of arrogance to tell someone else that they should do precisely as you have done because you have it alllll figured out.  [Name omitted] is 100% correct here.  Chronic illness is a beast that you cannot understand unless you have lived with it – yourself or a close loved one, either.

[Name omitted], not everything is curable or 100% manageable with eating the right food.  That is a fact.  You can improve your conditions, and symptoms – and I will even say that you can *always* get some level of improvement by doing so.  That does not mean that it makes every single condition go away, or improve enough for everyone to function the same.  We live in flawed, imperfect bodies with very individual needs.  This is not a one size fits all scenario.  So try developing a little compassion for the needs of others.

Why did I write such a long comment?  Because I am fed up with seeing ignorant remarks like this and a bunch others on this thread.  I am happy for anyone that has been able to get better results, but you all are not representative of the entire population.  I bust my a** to “eat right”, to exercise (as much as I am able and sometimes more than I should and I pay for it), and adapt so I can live my life, and do more than I used to, and encourage others to do the same, and stay in a positive and hopeful mindset, and set fantastic goals, and everything else you could possibly come up with, including consuming turmeric, pineapple, avocado, and everything else you could throw at me…… BUT….. sometimes we need a medical assist.  Let’s try to show some respect for those that do and stop putting them down for wanting to stay alive and be able to get out of bed in the morning.  We all do what we are able and continue to learn along the way.


Yep.  I said it.

We are all as unique as snowflakes.  We have different DNA patterns, different flaws and imperfections, different advantages, different experiences and exposures, different environments and life paths, and our outcomes and needs are very individual.  Along the way, we can only make comparisons.  We can find others with whom we identify on some level, in some area, but no one is a carbon copy of another – not even identical twins.  There are no living clones at this time, and even if it does ever happen they still will not be precisely the same once they have taken a few steps into life and had experiences and exposures in this world.  That is the wonder of life itself.  Embrace that, and you can get on with it.

I lost an old friend recently.  He hit “unbearable” and just couldn’t anymore.  I have been there myself, as I said.  I grieve the loss and what could have been, but at the same time I cannot judge.  There is not much I can say about it other than that it hurts deeply that he is gone, and that he felt that he had to just let go of life.  Anyone that cannot understand what goes through a person’s mind at that stage has never been there themselves.  The words are used far too flippantly these days.  R.I.P., my friend.

T

*** [Edit – additional thought]: Just as an added note, regarding pain (which is not the only thing people take medication for, and “pain medication” is not the only kind of med that treats conditions that cause pain)…. Pain, when intense and intractable, causes stresses on the body that in turn causes damage. Just for information sake. There are valid reasons in some situations for treating pain.  While it is inspirational to see someone able to tolerate and push through, it is NOT the right choice in all situations 100% of the time.  Adrenals become exhausted, blood pressure spikes, and the constant stress can easily elevate inflammation levels.  Continuous pain without relief is not a healthy condition.  It even interferes with reparation processes for healing.  Lack of sleep resulting from severe pain does even more damage than I can go into here, including screwing up hormone balances.  It’s complex and to be taken very seriously.  So if you think butching up and bearing all of it is impressive…. it’s not.  Know when enough is enough, please.

Strong

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