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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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Patient-Doctor Relationships


Some thoughts today on physicians. In being around a lot of other chronically ill people, I see some common issues taking place, and they are things that will cause you more grief than necessary. While we know it is true that there are “bad Drs”, and sometimes Drs that just have antiquated ideas – unable to move forward and update – and there are also some that are just bullheaded about their beliefs, they are not all worthless. Creator appointed people in this life to certain callings, and being a physician is one of them. We can’t discount everyone, based on the experiences we have had with a few. I don’t care if you’ve seen 15 different Drs, it is still “a few”. There are thousands out there.

It is easy when you are ill, and especially in pain, to become defensive. Negative experiences serve to bolster that feeling of defense, and it can even become an offensive stance over time. If you go into a Dr’s office with the attitude that you’re in for a fight, you will probably get one. When you are meeting one for the first time (or even the first few times), that is not a good time to put your dukes up. I’m not talking about cases of obvious abuse, as that does occur. I’m talking about you don’t know each other, and it is an introduction, an interview, and a time to get to know each other – it goes both ways. Don’t present yourself as angry and defensive from the second they walk in to talk to you. Be aware of your body language, as well as your tone of voice and how you say things. When someone speaks unkindly to you, you react to it. So will they. A new Dr is not one bit responsible for the last one you dealt with, and they should not have to pay the price for whatever happened before they met you. Exercise the same kindness and social graces that you would offer to a new friend, because they are being offered the job of helping you care for your physical (and sometimes mental) health now. I will often tell people this is someone you are paying for a service. That’s true. You cannot however develop a good working relationship with someone that you pissed off in your first encounter. At the very least, it will take time to undo the damage done. None of us have time for that.

The Dr I have now, we get along okay. That was not the case early on. Initially he seemed okay, but we hit some rough patches and disagreements. Instead of bolting to someone else though, I stuck it out and fought to develop an understanding between us. We still do not see eye-to-eye on every detail, but he has come to respect my views and needs. That would not happen if I had gone in there and told him off, or wasted time in a heated argument about things, and certainly not if I had run to someone else without any effort on my own part. What I have learned to do is walk away from an appointment that seems at an impasse. I take time to do my own research on an issue, make sure that *I* am educated on a health condition and any relevant medications/treatments, and my options. Then I go back and discuss what I have learned and do it in a rational manner – and you have to be open to ask the Dr questions about their views, and let them explain to you WHY. You will find that the more you are willing to listen to the average physician, the more they are willing to listen to you. In most cases, they need to have their say first. The reason for this is their schedule, the pressures, and the many things filling their head about all their patients for that day. Make notes so you don’t forget what you want to say, even during an appointment, but honestly let them speak first. When they are done, then you aren’t fighting their mental processes so much. Both my Dr and I were defensive in the beginning. We BOTH had to stop doing that to get anywhere. We both did.

Save your fight for your daily challenges. Save your fight for moments when it really is necessary to get what you need in the medical setting. Don’t fight every time you walk through their door. They will grow to hate seeing you. That is unproductive and pointless. Be as gracious as you want them to be toward you. If they prove to be incapable, THEN move on to someone else. Be someone that you would want to spend time around.

Pain Management Contracts


 

The new standard in pain medication dispense seems to be undergoing blueprint repetition from state to state now. Let me preface what I’m about to say with the statement that I do not object to having regulations to help reduce the unlawful abuse of narcotic medications. I also understand that there are addicts that have to be monitored. I don’t need a reminder of that because like everyone else in the country, I’m quite well informed about it. That’s not up for debate.

I am the dream patient any Dr should WISH they had. I’m not afraid to say that. I am educated, self-sufficient, honest, proactive, and disciplined. I DO the things that I say I will and need to, and work very hard to take care of this body that I live in. I have never smoked a day in my life, and have never even tried a recreational drug – not even once. I had a brief youthful bout of party drinking and outgrew it in short order. I am a responsible, intelligent, cautious adult that does however happen to have more than one debilitating and painful diseases that are incurable. I always seek the least radical approach to treatment, the least damaging, the lowest risks. I inform myself about what my medical conditions are, what my medications are and how they work, and the things I should and should not do for managing it. I am diligent about proper dosing, about follow up visits, and about performing prescribed therapy exercises as instructed. I have never displayed any behavior that should bring my intentions or actions into question. Not once.

They like to say this now, like it will make you less offended: “It’s not personal.” You know what? I heard it. I understand the sentence. It is not however appropriate to tell a patient that has just gone from a hard-earned trusting relationship with their primary care physician to one of monitored suspicion that it’s “not personal”. It’s VERY personal. I am allowed to have a feeling about the situation.

To state a comparison.. I recently read an article that all but said not to ever diagnose someone with SLE. It was leaning so heavily on diagnosing Fibromyalgia instead that I was really taken aback. It stated that ANA testing should be reserved only for those that display other very strong indicators that an autoimmune disease is present. (So we wait till it’s critical instead of treating early?!) When it comes to this drug testing however, you don’t have to display any strong indications of being an abuser. It’s arbitrary and disregards you as an individual. No looking at records, no personal evaluation. Just here, pee in a cup, sign this, and we’re making you run back and forth for small portions of this medication now. So it takes great provocation to get testing and treatments for your needs, and no provocation to get testing for something criminal that you didn’t do. That makes about as much sense as screen doors on a submarine.

I’ll put it out there because I have nothing to hide. I have some pretty severe pain at times, and if anything I under treat because I am so concerned with not toxifying my system. The last time I filled this pain med (which was only Tylenol/codeine), was February 2011 before I even had this Dr. It was a one month supply. It took me a year to go through most of it. I just had major surgery February of this year, and was prescribed a stronger medication by my surgeon with 2 refills. If I had refilled it 3 days ago, no one would have said a word. Because of this “pain management contract” that was whipped out at my primary’s office however, I am now being told that I am not allowed to refill what is legally prescribed to me on this bottle. I have to “pick one”. The situation is this.. I either under treat, because there will be times when my pain is worse and I need something stronger (I’m still in physical therapy), or I over treat and only have the medication that is a total knock-down when I don’t need something that powerful. If I am considered intelligent enough to handle a bottle of pills and know that I am supposed to take 1 every X number of hours, then I am intelligent enough to know if I switch to the other med I do the same thing. It’s like calling me a complete idiot. The nurse kept repeating to me that I should not be taking them both together. I said I don’t take them TOGETHER, hello? If this man is set up to be a “pain management Dr” of any sort, then he should understand what breakthrough pain is! No, he says. One or the other. If I’m traveling, if it’s the weekend, if I am not at home or whatever time of the day or night, if I need anything else for pain I am to call my nanny now and ask may I please have something else. Furthermore, if I lost my meds I would not be given a replacement. So if something happens to my prescription, “screw you”. I am not allowed to obtain pain medication from any other physician or fill it at any other pharmacy than that listed. So I am getting from this that if I have surgery again, my surgeon is not allowed to prescribe post-op pain medication for my surgical pain. REALLY???? Does he have to get permission to knock me out, or give me IV Dilaudid afterwards so I don’t scream and hit people when I wake up???!!!! What the HELL? If I’m in a car accident, and have to go to the ER somewhere am I in violation of my contract if they treat me? There is no exemptive provision in this contract for such a situation! What idiot writes these things?

I have what is called intractable pain. It’s not going away. If they come up with a cure for autoimmune diseases, I’ll be the first one to throw out my medication, believe me!

I’ve heard all the arguments in favor. There are just as many valid arguments on the other side of this issue. If someone is going to unlawfully use a medication, they will continue to do so in one way or another. Criminals do not care what laws you write about a crime. Criminals won’t sit around a Dr’s office waiting for assistance. They’ll get it somewhere else. In the mean time, law-abiding citizens like myself are humiliating, stigmatized, and treated like a file rather than a human. So how am I supposed to be okay with this? Unless YOU are the one being told you have a nanny and have to submit to random drug screens, and bring your bottle so they can count your pills, you cannot possibly understand what it’s like. I’ve had enough of people NOT in my situation telling me that they are okay with it. You do it, then get back to me. Let me know how you feel when you have a script for 2 x a day on a med that used to be every 4 hrs, and you have a bad pain day and you’re short… and the pharmacy could call the police because you tried to refill 2 days early. In Arizona a woman was SHOT AND KILLED in a drive-thru pharmacy for trying to refill a legally prescribed medication in that exact scenario. Tell me how this is not overkill. Tell me why a law-abiding citizen that has to be in fear of committing an innocent error is not supposed to feel criminalized.

I read of a case where someone was legally prescribed and using morphine for horrific injuries, and as can happen with morphine sometimes they tested falsely negative. They were promptly accused of selling their medication rather than taking it, and thrown out of the “program”.

In Arizona, in fact, if you are thrown out of such a program there isn’t a Dr in the state that will write you a script for any pain medication. So if you are ill with severe pain, you will be left to suffer even if it is due to a lab error, clerical error, or misreading a bottle. If you refuse to sign the contract, you will be labeled as “noncompliant” and likely lose all medical care – the primary will refuse to treat anything. Even without the Hippocratic Oath (which is not a requirement), there WERE laws governing such things… humane and ethical prevention of suffering. Where in the hell did they go????? Animals that are likely to be gassed to death have better rights for treatment. Old ladies in wheelchairs have to submit urine samples to make sure they’re not tokin’ it up or selling their drugs on the street. Wow. Really?

I’ll be really blunt about this, because if anyone reading this hasn’t realized it yet there is a specific reason this is happening that NO ONE is willing to say out loud. I will. Medical marijuana.

1. If you are caught with it in your system, even legally prescribed, you will violate your contract and be dismissed.

2. No pain management clinic or Dr will prescribe or dispense medical marijuana.

Think that through. This is all about preventing people from getting reasonable medical care while at the same time utilizing a LEGALIZED METHOD for pain treatment, because a bunch of people find it too controversial. SHAME ON ALL OF THEM. In the process, the rest of us that just want a simple med to make life livable are being treated like criminals.

This “system” is a cluster f***. Ten years of refusing one med after another offered to me like candy, and now that I actually NEED it, I’m restricted like a 6 yr old with half a brain. So excuse me if I am angry about it. I can find a few thousand other citizens that feel the same way. Search the web and see. Patients need to stand up for their rights to dignity and reasonable quality of life. My situation is NOT giving me that at present. So if you’re as pissed off as I am, speak up! Call congressmen, post on the web, tell your friends, object to administration at your med facility if there is a patient advocate that will keep you safe from retaliatory reactions. Don’t be a sheep.

If anyone is thinking “Well you have a choice, you don’t have to sign it.”  It is under duress if you know that you will not receive care if you do not sign it.  It is using your disease/pain as blackmail to get you to comply.  If ordinary tylenol would treat my pain, I would be more than happy to give up having a prescription forever.  If you need pain relief in order to function, you do not have a choice.

Oh and one more thing… the excuse was that both medications have acetaminophen.  Yes, and there is more in taking two of the milder med than one of the stronger one.  I’m well aware of the need to protect my liver.  Stop feeding me manure.

The Best Bad News


The best bad news you ever get is a Dr. stepping up and using the code 710.0 (or similar), because it usually means someone finally had the stones to say something you already knew for a long time. It sounds strange to be happy to get a grave sort of diagnosis, but if you’ve been through the catfights and screaming moments of frustration over being told you need a psychiatrist, or there is nothing wrong, or take a pain pill, or some deferred bullshit diagnosis that means nothing (*coughs* Preclinical Disease *coughcough* UCTD *cough*)… then you understand.

Am I relieved? Sure, in a way. Am I sad, kind of. Am I scared? No, not really. Nothing has changed except that some person decided to get with the program. Sad, only a touch because you really always hope that some Dr. will walk in and say “Well, Ms. So and So, you have Blahblahblee and if you take this pill for a few days, it will all go away.” Not really hope, just a nice fantasy. Secretly though, we all wish that a Dr. would DISprove to us that we have something incurable and say something truly encouraging instead. Right now I just kind of wish I still had access to the rheumatologist that showed me the most that he cared about me for real, and spent so much time with me trying to get me back pieces of my life. Instead I have to navigate a half-assed system paid for by half-assed insurance, which altogether makes for one big complete ass, I think. Peachy.

Where is Dr. House when you need him?

Wouldn’t it be nice to actually hear, “It’s not Lupus… it’s never Lupus.” and get another diagnosis that’s just easier to manage? You know, one of those stupidly simple things that the team overlooks through a bunch of other failed treatments and then they all go Oooohhh DUH and fix it? Our choices seem to be Lupus or Mystery Disease. Yay. I can definitely accept Lupus better than Mystery Disease though.

Now that it’s in black and white, even if the current Primary isn’t on board, his opinion really doesn’t make any difference. I’m thinking of laminating this piece of paper for posterity.

Love, Hate, and Wisdom


I have a love-hate relationship with my current primary care physician. She loves to say stupid things, and I hate her superior attitude. You might wonder why I haven’t reassigned myself to someone more amenable to taking care of my needs, but the problem is that I could end up with someone even worse. At least for the moment we understand each other.

I tell every Dr I ever see the same thing when I first meet them. If I call you, it’s serious. I don’t run to the Dr. for every bruise and sniffle, so if I leave a message saying I need in, it really is right-now urgent. I don’t kid about that and I expect them to take me seriously. This woman rarely even saw me up until I got fed up with the pain and stiffness, and episodes where I could barely walk. After going through a carnival of horrors with my HMO in 2006, I hadn’t wanted to deal with any of them again. I knew from experience they would 1. Refuse to give me a cortisone injection for no good reason, 2. Send me home with pills – most of which I can’t take without severe digestive distress, and 3. Maybe send me to physical therapy if I yell about it enough, but it won’t do me any good in the long run. Since the discomfort is now affecting my hands, I really can’t ignore the problem for their convenience anymore. After a friend gave me more info than I’d have gotten in a decade of dealing with my provider, I requested some tests. It was then that this positive ANA popped up. It didn’t surprise me by then. I expected it.

Unfortunately, Drs don’t like educated patients that expect certain results. My feeling on that is basically, ‘cry me a river because I don’t care‘. I’m not going to play dumb for anyone because, I’m not. If they’re so insecure that they can’t handle an intelligent conversation with a patient, they really shouldn’t be a physician in the first place. I’m paying them to assist me, and I am the one in charge of my health care. Period. Thank God my rheumatologist doesn’t act like that. I might have to enact the Lupus Serenity Prayer if they were ALL that way. If you haven’t seen it, it’s such a scream I just have to share it here:

Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of all the doctors I shot when they said, “You’re perfectly healthy, it’s all in your head.”

You must understand how common a thing it is for a Dr to suggest to a patient with autoimmune inflammatory symptoms that they should be sent to psychiatry. They slip it in there like it’s the only possibility and you should just accept that answer and go away. It’s getting worse too. No one wants to pay for anything, and the most offensive part of it is that I’m really sure after 5 years of premiums and co-payments, I’ve paid for any test I might need about 3 times over – especially considering my coverage has DOUBLED in that time (the cost, not the care). Being that I do not have a long history of invalid complaints, drug-seeking behavior, or nagging messages, you would think the fact that I’m now complaining about health issues regularly would make them pay attention. Instead I get, “I don’t know where to send you, except maybe psychiatry.” Between that, refusal to repeat necessary tests, and various dropped comments based on her personal religious beliefs, I’m about to blow a gasket.

Yesterday I accidentally crashed my electrolytes. Apparently the care with which I set up my necessary dietary regimen to reduce my discomfort put me on a delicate edge. Somehow I managed to forget that I hadn’t had a solid meal, what with running errands and working on my websites. By the time it got to around 9:00pm, I felt pretty ill. My heart was beating hard and irregular and my skin felt hot, but dry. I’ve experienced heart palpitations so many times in my life (hereditary) that I routinely will just go lie down until it eases. I did, and it didn’t. It finally took someone checking on me and determining that it was too warm for me in the house before anything made sense. After a discussion about temperature and how I was feeling, I managed to get my brain in gear enough to hunt down some Gatorade. After that I realized I needed food. Oops. I contend with my Drs regularly that removing salt from my diet is NOT a good plan, and they never understand why. I guess they assume that I eat like the average American junk food junkie, but I don’t. When I don’t salt my food, I crash. Since I didn’t eat food, I didn’t eat salt. You see where this is going. It was hot yesterday and I was out there. The problem with such a condition is that by the time you’re getting critical, your brain no longer functions well enough to tell you what you need. End of story was turning the A/C up, which I wouldn’t have chosen since my feet felt like ice, and getting a lot of fluids with citrus and a meal in my system… and I felt better. Better, not perfect. I’m still struggling today. The PROBLEM is that shouldn’t happen so easily. It’s not “normal”. I’ve had issues with this most of my life in fact. Yet… I can’t get a Dr to take a real look at the list of difficulties. Take this pill, go away.

I love the suggestions. One was for my complaint of memory problems. Her diagnosis was “stress”, and her plan was that I should read more books. That will improve your memory, she said. She then added in that irritating sing-song mommy tone, “and not TV…”, to which I replied with a sour look, “I DON’T HAVE TV.” I haven’t for the last 2 years. She had nothing to say to that. I think she has a hearing problem. Seriously. We went round and round about blood pressure for a while too. They would use that damnable automated vice (no, I didn‘t mean device), which causes me a great deal of pain, then wonder why my BP was high. I would tell them to check it manually and it would be normal. They would have already recorded that it was high from the nurse’s station reading however, so I would get a letter from the HMO telling me how bad it was and that I needed to make another appointment. I would throw the letter away. Finally I got sick of hearing her bitch and started eating ½ cup of dry roasted soybeans a day. It was genuinely a TOUCH high (not nearly so much as the anaconda machine generated), so that brought it down sufficiently. She checked it after I’d done that for 2 weeks, looked irritated and said, “No, you’re not hypertensive.” I looked bland and said, “I know.“ This was in the wake of about 4 prior conversations that went like this…

Dr: If your blood pressure stays high I’m going to put you on medication.

Me: No you’re not.

Dr: Well I will have to.

Me: You can write whatever you want but I’m not taking it.

What not a single one of them could pull their head out long enough to hear me saying was I’M IN PAIN OF COURSE MY BP IS HIGH. I came in there in distress and then they clamped my arm so yeah it was high. The next beautiful thing was me trying to make them understand that when I stand up it drops… a lot. The nurse perked up and said they were doing a study on that right now, so she checked it with me standing that time and indeed it did. Almost 30 points. It’s enough to make my head pound at times. You would think she would have noted that in the chart. Instead she used the lower number only. That’s peachy to shut the Dr up about “high blood pressure” but it doesn’t get me any help with the real problem. It’s a total circus.

Most people would just take the blood pressure medication, I suppose. I know from past experience a couple of pertinent facts that make it both unnecessary and dangerous. The first is that when I am not in pain and am able to go about my normal routine, my blood pressure is also quite normal. The second is that when they diagnosed me with PCOS in 2003, they prescribed the usual course of treatment initially, which is a blood pressure med called Spironolactone or Aldactone. It has the side effect of being diuretic which flushes excess hormones from your system. That’s why they use it. That would be wonderful if I weren’t deathly allergic to it. What I couldn’t tell at the time was that it drops my blood pressure SEVERELY, even in miniscule doses. I mean I chopped those pills into thirds and took the pieces with meals and it still happened. I felt a weight on my chest, I couldn’t walk 20 feet without my heart pounding and feeling like I wasn’t getting enough oxygen to stay on my feet, and I felt panicky. Along with feeling like I’d swallowed razor blades, it was overall unpleasant. I’ve listed myself as allergic ever since without exceptions. My current HMO has record of this. Would you believe that her response to me pointing this out was, “Well that’s why there are a lot of different medications”..? The thing I’ve learned over the years is, they may change the name a little, but if it’s a specific type of medication… there really is little to no difference in it’s mechanism. That means the side effects aren’t likely to change when they’re as severe as my reaction was. I also had an ER crash my BP critically with Dilaudid and Phenergan in 2006 so I think I know what I’m talking about by now. My body doesn’t like foreign chemicals. What’s the mystery here? Bad things happen.

She took offense one time when I said I didn’t want to be a guinea pig. She defended her stance and the change in medication the HMO was pushing (cost does that regularly), rather than understand that I’ve already been through enough discomfort to know what does and doesn’t work for me. It isn’t like I live in my body 24/7 after all. What do I know?

For some reason, in the midst of all of this when I had a sinus infection she decided that prescribing a sulfa antibiotic for me would be a good plan. I won’t go into the ugly side effects in detail, but suffice it to say I won’t get within 20 feet of a bottle of that stuff again as long as I live. The petechial rash and endless itching was just one of the joys I had to endure before finally telling them where they could stuff their Septra/Bactrim and requesting ordinary old Amoxicillin. Lo’ and behold I got better. No one finds it odd, of course, that I’m allergic to the one type of antibiotic known well to cause severe and even life-threatening reactions in Lupus patients. Never mind that Aldactone is also a sulfa drug. HMMM… gee.

And now for my other favorite, a relaxation technique when you’re having a bad day….

Picture yourself near a stream. Birds are softly chirping in the cool mountain air. No one but you knows your secret place. You are in total seclusion from the hectic place called ‘the world.’ The soothing sound of a gentle waterfall fills the air with a cascade of serenity. The water is crystal clear. You can easily make out the face of the person you’re holding under water.

Tala

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