I’m Over Being Ashamed & Voting NO on Prop 46

I landed myself in the hospital against this week. Despite feeling relatively well. Ok, that’s a lie. I’ve been doing much better lately.

I just hate to jinx anything.

But as we all have learned with this jerk of a disorder, just when you are lulled into feeling hopeful and happy and excited there is light at the end of this jerk tunnel…your get a dull ache in your lower back and then you start bleeding profusely out of your butt.

What? You thought I’d spare you the fun….oh no, you must be at the wrong blog for that my dear. I have never pulled any punches with my sweet pea readers and don’t intend to tone it down for you all now.

Now remember, I am on some heavy, duty drugs for pain…just my EVERY DAY PAIN. So to have a dull ache in my back makes me a bit concerned. And when it ramps up and becomes doubled over in pain, pain….I get SUPER concerned.

So I had to break down and do what I absolutely HATE to do, and avoid at ALL COSTS…I had to head to the Emergency Room. It’s a Sunday night, my rheumatologist was in Europe and my pain doc was only going to be able to help me feel better if I were in a bed hooked to an IV. My regular doctor would just defer to my rheumy and well, I just had no choice.

There are several reasons I HATE going to the ER or urgent care, not the least of which is the toll it takes on my family, but next would have to be how difficult it can be to get help and pain relief.

You see, being chronically ill means I am on a lot of medication. Like… A LOT OF MEDICATION. More than I am comfortable with and to the point where I have to take medication to help with the side effects of the other medication. Yup. That much.

But understand something, because this is really important: I am treated like a criminal every time I see a new doctor and by just about every government agency around, simply because I am chronically ill and in constant pain.

I jump through so many hoops on a monthly basis to “prove” I am in need of narcotics, that it makes me feel ashamed when they don’t work and I need to change them or I need a higher dose.

SHAME. THEY MAKE ME FEEL SHAME TO TALK TO MY DOCTOR. 

And there is a Proposition in California on the November ballot that would add yet ANOTHER hoop to jump through in order to get the medication every single doctor agrees I need, and it SCARES THE HELL OUT OF ME.

On it’s face, Proposition 46 seems like a good idea. And I agree, it was born of a good idea- to raise the cap on one of the medical malpractice limits. All of the other limits are … well, unlimited. If something were to happen to you or yours, you could sue for unlimited amounts. Except in the “pain and suffering” category. That one has been stuck at $250k for a long time and has not been bumped up for inflation. So yeah, it seems reasonable to responsibly raise that limit, at the very least, to keep up with inflation. It seems reasonable to do it in a manner that won’t screw over the small clinics or orgs that, for the most part, help women and children.

Except Prop 46 didn’t go this route.

Instead of putting forth a simple bill that would raise the cap, the powers-that-be put forth a bill that raises the cap immediately and without any clauses or delays built-in for those clinics who will need to absorb the costs  (or people or doctors or whomever) AND it tags on TWO MORE huge health care issues-random drug tests for doctors (whaaaaa?) AND a mandate forcing doctors and pharmacists to check the “CURES” database before handing out any hard core drugs for the first time. (Again…whaaaaaaa?)

Of course this dealing with health care, and my condition, I immediately have to check this out and find out how these things will affect my life. What can I say, politics is personal.

Turns out, as happens with MANY of these elections, one of my friends is working on the No on 46 campaign. Odds are if it’s happening in the world of politics, I will know someone working for the candidate or the campaign or the grass roots org or something. This was no exception.

So we chatted and quickly I was sitting down at my kitchen table with Teri Holoman, who is consulting for No on 46. The more I learned, the more frightened I became. And it’s also why I told you the ER story to start this post…because I need to walk you through exactly how all this will go down the NEXT time I go into the ER if 46 passes (please no please no please) and what I ALREADY go through in California as as safeguard for those who are “doctor shopping” or “drug seeking.”

You know, the way I’m treated already every single time I see a doctor who is unfamiliar with me or my case. Which, when you have nights and weekends in the world and a chronic condition, happens way more than you’d think.

Ok so now you are thinking…what could be so bad Erin? It’s to protect people, and kids, and small fluffy kittens….so it can not, possibly be bad. You’ll still get your meds if you really do need them, after all if you had nothing to hide it won’t be an issue for you..plus some big name Democrats are on board and you are a Democrat so what gives?

I’ll tell you what gives. The next time I’m doubled over in pain and I end up exactly where I was, I may end up admitted (without it being entirely necessary) just to get the pain relief I need or I may not leave with the medication I need to get me through the pain until I can see my regular doctors. OR I may get the script and then the pharmacist may deny me the meds I need to get me through the pain until I can see my regular doctors. All of these probably landed me admitted to the hospital to keep those bills coming to my mailbox.

All of these are real possibilities. Because despite what the other side says, or how this may have all started out as a really good idea from a very honest place, the language of the proposition is very clear. It says doctors must “ACCESS AND CONSULT” or be “HELD NEGLIGENT” and get this, the damn CURES database doesn’t even FRIGGING WORK ALL THE TIME and the guy running it says it will basically crumble under the weight of Prop 46 and all these new docs and pharmacists using it rendering it useless and rendering me STILL IN PAIN and with a doc or pharmacist stuck between a rock and a hard place…give me the meds or “be HELD NEGLIGENT…” for not checking the database because it was down or not working and giving me the meds anyway. Let me calm down and be more technical…the state staffer in charge of running the database has called CURES “not sufficient.” Testifying before the California Medical Board, he said that he himself gets kicked out of the database when trying to run inquiries. What’s more, he testified that inquiries into the system can take “anywhere from moments to never.”

Now listen…I GET that this is supposed to protect people from all those folks addicted to prescription meds. I GET IT. But do you have any idea how many OTHER laws are in place to “protect” people from us horrible pill poppers?

Let me tell you exactly how I get my usual meds, maybe that will shed some light on things.

First of all, my regular doctor and my rheumatologist won’t give me anything stronger than my Xanax (which actually falls into this category…) or Toradol injections. If they were to give me the narcotics I need over a prolonged period of time they would have to register me and a bunch of other stuff that goes with me (like, all the proof I need these drugs, etc) with the DEA. Mind you, the DEA gets all of this ANYWAY and even if they do it short term…but regardless, we have me going to a “Pain Management Specialist” who takes care of all these things. It means my other doctors don’t have to deal with all the red-tape and potential lawsuits, and I am in the hands of a professional who can help me as I go on and off being physically dependent on these drugs.

Fast forward to my every 2-3 week (depending on how I’m doing) appointment with my Pain Management Specialist, Dr. Kumar.

It started, long ago, with all of my lab results, hospital records, rheumatology records and general practitioner records being sent over to Dr. Kumar. On top of all of that, and despite all of the very clear diagnosis he was given, he sent me for his own tests that included several very costly MRIs.

Once it was determined I really was sick and had some very severe health conditions, he agreed to be my pain doc…and I his patient.

Now, back to my usual appointment…it starts with this:

Because if he sees I’m on anything other than what is prescribed, or the DEA sees it, I get cut off. Or sent to some treatment program. Actually, he would know we have issues.

When I decided to try medical marijuana to see if it would help, the office manager had to scan in my certificate stating I was legally able to have medical marijuana and it was noted in their records and the DEA’s (again) too…along with the State.

Because my rheumatologist prescribes my Xanax (1mg 3 x per day to counter act the prednisone) this too must be noted and shown in each record, because my pee will show it.

Then he goes over all my recent labs from all the other doctors and we talk about my pain. Currently, because of a recent flare, I’m on a higher dose of the narcotics (methadone, precoset) than I had been on. We had been slowly pulling me down.

After our chat I leave with a hand written script:

…which is copied and noted by the DEA, the State, and each of my doctors. I have to take the script to the SAME pharmacy each time, or else it sets of red flags in all the systems and I get nasty letters saying I might be an evil drug seeking, doctor shopping, pharmacy shopper and the insurance may not pay any longer and big mean government guys may come check me out to make sure I’m ok and don’t need help, or throw me in jail…whichever. I’m paraphrasing but you get the idea.

Now…should I lose any pills, drop any down the sink, have my purse stolen…doesn’t matter. I don’t get any more. I also can not go in a day early, or two days early for my next appointment. I can not be seen by the doctor until the very day that script runs out…if I’m going on vacation, I have to show him my airline tickets and he will post date a script for the exact date I will run out.

So you can imagine when I land in the ER the first thing my husband or I (if capable) always do is hand over the cards of Dr. Kumar and Dr. Caro, my rheumatologist. We ask they be called IMMEDIATELY by the ER doc so they can be told of the extreme circumstances of my illness and my PAIN and know right off the bat I’m not a drug seeker and I’m not doctor shopping.

Some ER docs call my doctors. Some ER docs do not. Some urgent care docs call my doctors. Some urgent care docs will not. They want to see test results first or they believe they know best and will give me “a little something for the pain” to help while we wait for said results.

In California emergency room docs can only give 1ml IV of dilaudid total no matter how long you are in the ER or the equivalent dose of morphine. Because of the amount of medication I take, my tolerance is very high. Morphine doesn’t do anything for my pain and Dr. Kumar, when I’m admitted for pain management, orders me 2-2.5ml of dilaudid every TWO HOURS to get me back under control. That’s on top of my methadone, my lyrica, and percoset for breakthrough pain. That basically means it takes a lot to make me comfy – you know, the dose your average elephant would get- yet the ER doc usually comes in with .5, 2xs, before he finally sees a test result or TALKS to one of my doctors, realizes I’m not kidding, and finds an admitting doctor to give me the correct dose. Notice I said “admitting” doctor, which means I can’t go home. Now you know why I avoid the ER unless it’s truly so horrible I’m worried about my life and my organs and things that are super serious.

Should I end up in the exact same position as I was this week, where it was concluded inflammation (surprise, surprise, this is what LUPUS DOES) was making my lower back hurt and pushing on my also inflamed semi-colon (that’s what we loving call my colon, because Lupus took half of it in 2010 along with a bunch of other organs riddled with inflammation) thus causing the blood to come out of my ass. It was then the doc in the ER realizes he would either have to admit me in order to get the right amount of pain meds to help me NOT CRY, or he might give me what he can in the ER, then take a look at the CURES database he’s now forced to check, if it works, and SEE what I am on and conclude that IV meds plus a script for home (remember Dr. Kumar had been lowering my dosage because I was doing well) will do the trick…but now he’s seen the database (maybe) and doesn’t want to be liable for letting me leave with more narcotics via a script…OR he might check the database, talk with my docs, and realize it’s entirely the right thing to do and hand me the script and let me go home, where I’m much more comfortable and subject to less germs with my compromised immune system. (The last scenario is what happened on Sunday/Monday morning because I begged to not have to be admitted, knowing my immune system is low and he had disclosed he had several cases of MRSA in the ICU and it was a bad time for infectious disease at the hospital…he agreed the hospital was a horrible place for me right now, and if we could make me comfortable at home, that was the goal)

But it doesn’t end there.

I left the ER at 3am Monday morning. The only place open by us at that time is a 24-hour CVS, where the pharmacist would be forced to check the database as well…which may or may not be working…and then he/she gets to either give me the meds as prescribed OR deny me because that’s not my normal pharmacy and holy crap the database says I’m on a TON already…because what pharmacist would want to be liable?

See…that’s when Erin finds out this proposition that started off with good intentions is actually a huge scam by trial lawyers to make more money. They make money by raising the cap, they make money by suing the hell out of the ER doc and the pharmacist and anyone else who gave me a script. They make more money by drug testing doctors, hoping to catch the one bad apple. And they didn’t even get the drug testing part right! They claim to have modeled it after how they drug test pilots…but, um…no. Not exactly. They left out some huge things, that, of course, benefit the lawyers. The idea is to protect people from doctors who are drunk or high, but the prop calls for them to test AFTER an incident has occurred. Uh, how does that protect the patient? AFTER the patient has been screwed? As for those doctors, they screw up just as much as the rest of us, getting hooked on drugs or having a drink too many. The same lawyers fighting for this proposition have allowed themselves health insurance that includes addiction help that remains anonymous, but refuse to allow the same for the doctors. You know, so they can sue them.

Oh as for those big name Dems who have endorsed the proposition? I personally think they should recuse themselves from endorsing either side due to spouses & other family members who are medical malpractice attorneys or just plain old trial lawyers.

This proposition is actually so bad, it’s got political foes agreeing NO is the only way to vote. I’m talking the ACLU and the California Chamber of Commerce AGREEING. Maybe this is the beginning of a new, bi-partisans era in California? With all of us rallying together? Hell bent on defeating this proposition?

I will be 100% honest with you, had this just been a prop about the cap I probably would have voted “yes.” But instead they got greedy. They got greedy and they got sloppy. This thing appears to have been drafted by children. The wording is that convoluted and it’s meaning lost within the addition of drug testing and mandatory CURES checks.

I will PERSONALLY OFFER to help draft NEW legislation that will raise the cap in a responsible manner, which is what the grassroots of this Prop want. I will reach across the aisle and I will make sure this coalition of strange bedfellows remain bedfellows for the sake of those who deserve all they can get if their family or loved ones have been wronged by a medical malpractice. I want this done responsibly, for the right reasons, not by trial lawyers who took this over to make money. That’s not the spirit of this prop and it has become the spirit, thus taking what was a good idea and turning it into a big mess that hurts more people than it helps.

But I will not stand by and wither in the corner, in pain, looked down upon like a junkie by every new doctor I meet simply because they looked in a broken database. I will not give up constitutional rights, even if I’m not a doctor, because my doctor went home on a Friday night and had a drink, or took his legally prescribed Xanax or pain pill after a day of work, and THEN gets a call he must submit to a drug test or be ASSUMED negligent.

But most of all, I will not continue to suffer because I feel shame asking my doctor to HELP ME out of the pain I feel.

No. No. No.

No on 46.