Pain and Narcotics

I cannot believe the state of pain control in this country.  It is driving me batty, and tonight I’m quite pissed as I hear of more than one person close to me suffering because of inadequate pain control.  Why?  Because opiates are being so abused that doctors are afraid to prescribe them for fear that they’ll be shut down.  There is no doubt in my mind that prescription drugs are being abused.  However, I see personally with my own two eyes too many cases of people in legitimate need being made to suffer.  Surely there is a happy medium somewhere, and those with real needs can have those needs met?  I myself would have been totally and completely screwed with regard to pain relief for a progressive and terminal disease, had it not been for the intervention of my very awesome PCP who has known me since before I was sick with said disease and knows that I’m not abusing nor selling my meds.

Today the case closest to me is my dad.  Now, my dad has spina bifida, a mild case, but it’s something that has always given him trouble and is easily verifiable.  He’s had multiple spinal surgeries and fusions and implants and all sorts of things, and has been on pain killers for years and years and years.  He’s not asking for an increased dose, a change in medicine, or anything other than the same routine he’s been under for the past five years or so (with his pain under control and him able to work part time).  However, today in his town they shut down another four doctors and one pharmacy and Dad’s doctor is running scared and not wanting to prescribe anything narcotic any more.  Who can blame him?  So tonight I listen to my mom cry as she takes my dad to the ER because his appointment was today and his doctor refused his refill, and she’s worried that he’ll be labeled a drug-seeker at the ER and even that will not bring him any relief.  She’s probably right too, they don’t have access to Dad’s history and records and all they see is another guy coming in complaining of back pain and asking for oxycodone, 10mg please because that’s what I usually take.  Sure buddy, let me hook you right up here!

I think that is so fucking irresponsible of my dad’s doctor and I am so pissed for him, but he is old school and army and respectful of authority and he won’t raise a fuss.  Instead, he called back and begged and they agreed to see him for injections on Monday and they will give him a small script then to hold him over, but that will be the last one.  And Dad has about zero chance of finding another doctor there willing to prescribe for a new patient, because to do so at this point in time would be like shooting oneself in the foot.  It’s not like he started himself on these meds all those years ago.  And I see no reason in the world why a person like him (or me!) should suffer simply because there are dumbasses out there who choose to abuse the things that bring relief from pain.

I hope the ER brings him some relief, at least for the short term.  I have no idea what the long term solution is.
I forgot to mention, in my pissed offed-ness, that the doctor refusing said narcotics is in fact a pain management clinic.  It is not a primary care physician or anything, oh no, because the first thing suggested to me was “Tell your Dad to get to a pain management clinic!”  He’s already there, and that is who is refusing him.  😦

Read Full Post »

Adventures in Doctoring

So I went to visit my new PCP today, and what an experience that turned out to be!  I have never seen such a place.  It was more like a legal drug dispensary?  I don’t know how else to describe it.  I went in, and had to wait forever, and then was instructed that I could not see the doctor without consenting to a urine drug test.  I told them fine by me, but they would find in my system at least a couple of restricted substances that were prescribed to me and taken as written.  They said fine, and I peed in their cup, which was apparently sent away for testing and will be returned some time within two weeks.  Then they put me in the room (with the 2 youngest kids) where there was, of all things, a DENTIST chair.  Yes.  I said, “Hmm, interesting” and sat in one of the regular chairs in the room.  The nurse explained that the doctor just bought said dentist chair because he hopes to get into teeth whitening.  Uh… okay?  He is actually a doctor, right?

Well, after three hours and an exam that basically consisted only of said “doctor” listening to my lungs, I was offered a script for my antidepressants for today, and told that I’ll have to return in two weeks for my pain killers to ensure my drug test is clean and to get the records from my other docs to make sure I’m not double-dipping.  Awesome?  It took three hours for this, and he will only write scripts for a month at a time (last PCP was 3 months but laws may be different in WV for all I know), so once per month I have to go sit for half the day just to have pain relief.  It is a sucky system indeed that we have here.  I can see the need for it, but when you are so sick as I often am, you just do not feel like jumping through the hoops.  If there were not kids here who depended on me, I’d probably rather lie in bed and cry than deal with that shit many days.  I guess I should be thankful the kids keep me going.

Read Full Post »

Stolen narcotics are no longer a crime!

I’m sure you are all going to be so relieved to know that stolen narcotics are no longer a problem as they are not a crime as far as the police are concerned!  Even if your narcotics happen to be in a bag with your purse which happens to get lifted from your vehicle and even if the replacement value of all your meds are over $3000!  Isn’t that great?

So here’s the story:

I left my stuff in the car at our friend’s house Thurs. evening because I simply had too much to carry with food and clothes and nebulizers and such, and when I went back out to get my bag of meds and such from the car Fri. morning they were not there.  I panicked, because I don’t usually carry all my meds with me but because we left the house in such a hurry I had just grabbed EVERYTHING and thrown them in a bag, so there were a whole months’ supply of percosets, chemo drugs, prednisone… I take a lot of prescription drugs.

I called my family doctor (who prescribes most of them, my pulmonologist being the other prescriber) and they told me to call and make a police report since there were narcotics involved, and then they would call in replacements for the rest and I could stop by and pick up a new script for the percs as it has to be hand written.  I called the non-emergency police number, and the dispatcher told me they could not come make a report.  Honestly, I understood it to mean that due to the ice storm, down power lines, accidents, and such, that they were overwhelmed at that time and I thanked them and hung up.

I called the doc back, in a panic, and relayed the message that they wouldn’t take my report, and they said it was okay under the circumstances, she went ahead and wrote the scripts without a police report and hubby went and picked them up and dropped them at Rite-Aid where I was supposed to pick them up in an hour etc. and so on.

I went to pick them up, and the pharmacist there informed me that my insurance (medicaid) would not pay for replacements because I was 2 weeks early on all of them and it would cost me almost $3000 for all of them.  He also informed me that there are a lot of them (the chemo in particular) that I should not just stop taking as it could be very detrimental to my health, and that one in particular is $1200 for a one month supply.  However, he got on the phone to medicaid and they said that they could override it and they would pay if I could/would fax them a police report with a list of the stolen meds on it.

Soooooo, I called the police back again from the pharmacy this time, and I was very upset and crying and freaking out because no way I can come up with $3000 for replacement meds, and the dispatcher informed me that “WE WILL NOT MAKE A REPORT ON STOLEN MEDS.”  The pharmacist said to be sure they realized the dollar amount involved, so I told her, and I also said that my purse and all its contents were gone from my car as well, and she told me, “You are wasting my time, we have important things to do and we will not make a report on stolen medicines.”  She proceeded to hang up on me.

It is three days later and I am still pissed thinking about this.  Thankfully the pharmacist was a lovely beautiful person and he called medicaid back on my behalf and they did get me a two week replacement supply until my next refills are due.  I had to pay for some of them, but they did cover the most important and expensive ones (I think I paid $70 in the end).  I seriously want to send a thank you to the pharmacist because it was a crazy busy day in there and he went out of his way to make sure I was covered but still

WHAT THE HELL, POLICE?

The place where my 5 year old takes Tae Kwan Do is run by a captain on the local police force (which is not the same as the ones I was calling because i was in the next town over) and I can’t wait to ask him about this policy.  I assumed that considering the $$ amount involved AND the fact that narcotics were involved that this would at least be a crime worthy of a report.  And what the hell would someone do in that situation had the pharmacist just said, “Oh well, sorry.” ???

Well, sorry so long but there’s the med story.  Another winter storm is headed in tomorrow so I am hoping to not lose power again.

Read Full Post »

Health Care Rant

This post probably has to come in two parts, because if you don’t have the back story then it won’t make a bit of sense.  So, the backstory is that I belong to a forum of mamas who like to eat bacon and bitch about the injustices of the world, and yesterday morning I was having a particularly bad day and wrote this:

Warning, rant ahead. 

I really hope that Obama can do something to fix this situation because this really sucks. If anyone doesn’t know, I carry a terminal dx right now of idiopathic pulmonary fibrosis. It isn’t very well known although it is what killed evil kneival! At any rate, I see a doc at Ohio State every 6 months or so, and I’m on a whole plethora of meds including chemo meds and steroids and pain killers which allow me to go about my day with my five kids. In January my dx might be changed to bronchoalveolar adenocarcinoma, a rare lung cancer if I agree to allow the OSU doctor to repeat the open lung biopsy. So I may or may not have cancer.

I am on disability despite having an MA and being one quarter short of my RN because I can’t breathe and therefore I can’t work. So I am on state insurance, medicaid, which has been a blessing because without it I’d probably be dead by now. I just moved from OH to WV, and I am in the process of trying to switch everything and my WV medicaid kicked in Nov. 1. My OH family doc decided he thinks I’m a druggie and will no longer write my pain meds script, and I am searching for a new family doc as well as a local pulmonologist in case I need tending to locally (in case of sickness, pneumonia, exacerbation, etc.) Ohio State is about 3 hours from me and it takes MONTHS to get an appointment there, not exactly helpful if you’re down with something ya know?

So, I’m calling around and there are NO FUCKING DOCTORS around me that take medicaid if you are a new patient. Seriously, the only option I have is the walk-in clinic at the WIC office. What are the odds that anyone at the WIC office clinic knows anything about my disease? Slim to none, that’s what. And furthermore, there is a big ole sign as soon as you walk in that states that they are prohibited by contract from prescribing narcotic pain medication, so they wouldn’t/couldn’t give me that anyway. 

So, let me recap. I have 5 children, the youngest of which is just getting ready to turn 2. My life expectancy is less than 5 years with my current dx, and less than that if they decide it is cancer. I have pain with every.single.breath and I cannot have a script for pain meds because someone somewhere thinks I am addicted… why this is a problem, even if I am, is beyond me. Why I have to live in pain is beyond my scope of understanding. I cannot get a local doctor who is knowledgeable in my disease because apparently state insurance does not pay enough to make it worth a doctor’s time to see me. So here I sit where I will suffer in silence until in the end I wind up in the ER from lack of meds/chemo/steroids or when/if the pain becomes too much to bear.

I am not abusing your fucking narcotics, I am simply trying to enjoy what precious time I have left with my children. I am trying desperately (and unsuccessfully) to maintain a quality of life that allows me to be an active participant in the lives of my family rather than a vegetable lying in bed watching them from the window because I’m tethered to my oxygen machine and in too much pain to make it outside.

FUCK YOU AMERICA’S FUCKED UP HEALTH CARE SYSTEM AND FUCK YOU TO THE DOCTORS WHO CANNOT BEGIN TO UNDERSTAND WHAT I LIVE WITH EVERY FUCKING DAY.

The end.

Read Full Post »