The contents of this blog are copyrighted to the author, Missy (unless otherwise noted) and may not be used, reprinted, published or in any way copied without written permission of the author.

The medical information contained in this blog (when it appears) is not intended to provide medical advice of any kind. Any medical topics discussed here are as they pertain to the author and her conditions only. Do not make any changes to your medications, treatments, etc. without speaking to your personal physician first.

Monday, March 26, 2012

How Do You Deal With This?

This was written at 5:10AM on March 25, 2012 in my written journal. I was having great difficulty sleeping as usual and my mind was running with thoughts. I wanted to post on here but didn't want to disturb my husband who was asleep beside me by setting up the laptop in the bed. So I wrote in a notebook and am copying it here.

Sunday March 25, 2012 5:10AM

How do you fight depression and apathy when your physical ability to move is so screwed up? I used to fight depression by doing things such as going for walks, cleaning the house, taking a drive, and similar activities. Of course there was the mental effort as well such as recognizing when I'd start thinking life sucks or I'm a bad person etc. I would consciously force my mind to think of something else then distract myself by getting up and doing something.

I am failing at fighting my depression and apathy now. I can't use physical activity as a distraction because I have to pace myself. Cleaning, for example, gone are the days when I could tackle a room and do a heavy cleaning for a couple hours in a row then move on to the next room. I used to be able to clean and rest in 10 -15 minute bursts. Now I have to clean in 5 to 10 minute bursts; clean for 5 to 10 minutes, rest (sitting down) for 10-15 minutes to gauge my pain level, clean for 5 to 10 minutes and repeat until I hit a 7 on my pain level or the cleaning is done, whichever comes first. More often than not, the 7 comes first now since I start most days at a 6 and can't stand for more than 3 to 5 minutes, and my pain steadily rises while I'm on my feet. It used to stay more constant and the cycle was more for me to be able to gauge my pain level than because I couldn't stand. It doesn't take much to make me go from a 6 to a 7, especially if I am moving around. The resting time just reminds me that I am disabled. It serves as proof of the negative thoughts that cross my mind, making it harder to fight those thoughts since they are true. Thoughts such as "I can't even vacuum the living room in one go anymore"--true. "I can't stand long enough to cook dinner anymore"--true.

Every attempt I have made to get back on a schedule has failed. I can do it for a few days, maybe, then its gone. Am I trying to fix too much at once? According to the chronic pain books I bought I am. But starting with just a small thing like taking a shower every day feels like it isn't enough, like I should be doing more. Then, because the shower energizes me and I feel I should be doing more, I do other stuff as well such as cleaning or playing with Bridgette and send my pain sky-rocketing for a day or two (sometimes more). This makes the next day's shower impossible because my pain is too high and I can't walk right, if at all and boom I'm back where I started.

Maybe I need to start with the mental stuff more than the physical? Maybe I need to change how I see only what I can't do instead of what I can do; change only seeing what I haven't done instead of what I have done and change telling myself I can't do this or that out of fear of the price I'll have to pay for the activity either through much higher pain levels, pain crisis, being unable to walk, or a combination of unable to walk and more pain/crisis. The result of this fear of the cost is that I do nothing, feel like crap about it, mentally beat myself up and the cycle continues. So how do I change this? The same way I changed my self-esteem from "I never do anything right" to a more balanced view by writing lists each day of things I did right, thus re-training my brain to see both? I'm not sure how to make that work in this situation. Yes my self-esteem has taken a hit, but I haven't reverted to seeing myself as a bad person, no good, or unable to see the things I do correctly. Maybe I just need to change the negative self thoughts to a more positive statement. For example instead of saying "I can't cook dinner anymore" change it to "I can cook dinner if I plan ahead, pace myself, and use the bar stool like I did when I cooked Thanksgiving dinner."

Changing those thoughts is so hard, in part because I hate my condition. I hate what it has caused me to become. I hate the idea of yet again having to "fix" myself. It is exhausting! I've been pretty much dissociating  from my life because it makes it easier to be stuck in bed every day, in pain, physically disabled, and unable to do much, if anything, at all. By dissociating and not really thinking I can ignore some of the physical pain (which is good) but I can also ignore everything else that bothers me. It shuts off the thoughts of being broken etc., shuts off the fear of movement increasing my pain because I'm not moving or trying to do anything as a result I don't fail at doing things and the self-recrimination doesn't start. Of course this means I also don't have anything I can look at and be proud that I accomplished it. But in a way that is also good because having pride/joy in an accomplishment makes me want to do more, so I do and my body slaps me back down hard, usually with a pain crisis that lasts at least a couple days. During those couple days Ron has to help me on and off the toilet, he has to help me put on or take off clothes, etc. This is humiliating to me so I want to avoid it.

So where is the middle ground? Is there a middle ground? How do I stop mourning for everything I've lost to this pain? I was doing okay with it until the time I fell and hit the marble topped end table and added another fracture to the SI joint about 6 years ago. This resulted in constant swelling and a large jump in my pain level. I had started to accept the new level and was doing better until I received yet another fracture line when I fell on Christmas Eve 2010. It is since that last fall that I've gotten angry, depressed, sad etc. and can't seem to get myself out of it. I know part of that is because I am stuck in bed every day and can't stand for more than 3 to 5 minutes and because I know that fall was not my fault. Like the fall a few years ago (the table one) this latest fall that resulted in a new fracture line was directly caused by someone else's actions not my own and it wasn't an accident. The fracture wasn't intentional but making me fall was. When I fell I hit the left SI joint, right at the base of the scar that is directly above the joint, on the end of the chair at my computer desk in the living room and I hit the right SI joint on the edge of my desk; both at the same time because the chair was pushed in close to the desk and there wasn't enough space for my fat butt to go between the two and just hit the floor. This chair, like the end table, is solid wood and built really well. Ron's dad built a couch, two chairs, 2 end tables, and a coffee table for Ron and his first wife many many years ago. They are very solid pieces of furniture. I can't remember how many times I have broken my toes by accidentally hitting the legs of those pieces of furniture. lol

I am terrified that I can't win this time, that I just don't have it in me anymore to put myself back together again, to keep fighting. No I am not suicidal. I mean that I don't seem to have it in me to learn how to function despite the new normal for my pain. I seem to prefer to just space out, dissociate, rather than face it and fight to get some semblance of a life back.

Everything just seems like so much more work, even the simple little things I can't just do them without thought and planning first. I have to think of every step involved in that task, plan how to best complete the task, come up with a way of doing it in a manner that causes the least stress to my body thus the least impact on my pain levels and after all that, then I do the task. This takes a lot of mental and emotional energy and often seems overwhelming. If my first plan fails I have to start over trying a different way, over and over until I find one that works. Then this is complicated further by the variable nature of chronic pain, some times what worked one time, will not work the next time which results in having to think and plan again. It is exhausting to have to do this for everything in my life from simple things like reading a book to Bridgette, taking a quick shower (HA HA no such thing as a "quick" anything anymore), doing laundry to everything healthy people do without having to think of every little action/movement that goes into an activity and plan how to do each movement. It is exhausting mentally, emotionally, and physically and even when I do manage to find a way to do something, I still end up with a rise in pain levels though that rise is not as high as it is when I don't plan things out.

What makes it worse is to have healthy people in your life who do not understand and just saw me as lazy or faking it to get attention (such as my family members [the family I was adopted in to when I was 2 years old]). On this issue I am fairly lucky because the people in my life do get it and do understand that chronic pain can vary from day to day (or even multiple times within the same day) and thus affects what I can and can't do from one day to another. Over the years I have lost the friends and family members who did not understand either because they left me or I chose to end the relationship.

I am just so exhausted and feel so discouraged, afraid, and lost.

Sunday, March 18, 2012

New Commenting System

On other blogs I have seen comment sections that allow people to post a response to a specific comment. The replies are indented and show up underneath the comment they are responding to. This allows people to have a conversation with each other and receive replies directly linked to their comment. On Rosemary's blog Seeking Equilibrium, I have greatly enjoyed the system she is using for comments on her blog. So I went ahead and followed the link to the website for Intense Debate, the company (I guess it's a company) that provides the program/coding for the comments. I signed up and followed their installation instructions.

I was surprised at how easy it was to install. I then tested it (hence the two comments at the bottom of this post LOL) and it works great! 

I wanted to do this because I can't always sit up for long periods of time and thus am unable to reply via email to all the comments even when I want to. As a result my response emails can go out days (or sometimes weeks) after the original comment was made. I feel bad about that and wanted a better way.

With this program installed on my blogs I can now comment directly to people in a faster yet still personal (to each individual person's comment) way.  When you make a comment on the blog there is an option to "subscribe" to the comments and you will receive an email update about further responses. You can select "all comments", "none" or just "replies". By selecting replies you will be notified when anyone replies directly to your comment. This notification will be helpful in letting you know that someone (either myself or someone else) has posted to you so that you can view the reply and choose whether or not to respond to it. Selecting none is self-explanatory and selecting "all comments" means you will be notified of every comment posted after your own, even if they were not in reply to your statement. 

I hope you enjoy this new system. Thank you again for reading my babblings, I do appreciate it a great deal!

Wednesday, March 14, 2012

Oncologist Visit

I wasn't expecting the oncologist to do much, but boy did they make me nervous! He is a radiation oncologist so he doesn't do much (if anything, I'm not 100% sure though) with patients until they've been diagnoses with cancer ad referred for radiation. I called him because back in 2010 he was such a great help to me. he understood and knew about phyllodes tumors, and was willing to answer all my questions.

So I went to see him on Monday. As I said, I called to find out what I needed to do and the nurse called me back. Anyway, he remembered me and asked if I had the resection done. He had recommended the surgeon go back in and take some more tissue because he didn't agree that they had gotten a wide enough margin. I explained the surgeon refused to do it. He looked a bit angry but hid it fairly well. He then agreed that yes this thing in my back might be a phyllodes but he can't say for sure whether it is or not. I said I understood that but I just wanted to know if I was thinking correctly or if I was just going off half-cocked for nothing.

I understand docs have to be careful what they say to patients, and he was very careful how he worded things. But basically yes it could be a phyllodes, it could also be any number of other things. He said I need to see a neurosurgeon to have it evaluated and that it should be removed and biopsied. So nope I'm not over-reacting, which is nice to know since I am aware that I can do that at time. It is possibly a Phyllodes Tumor, but only way to be sure is biopsy.

Soooooo..time to get a neurosurgeon to see me.

Saturday, March 10, 2012

Return Call From Oncologist

I put a call in yesterday (Friday) to the oncologist I saw back in 2010 after the biopsy results came back. I wanted to be sure that I had the right information about Phyllodes tumors and that everything that could be done had been done, so I went to see him even though the surgeon told me it wasn't necessary.

So I called his office leaving a detailed message and asking what tests or things I should be asking my GP about when I see him on Wednesday. The oncologist's nurse called me back a couple hours later after discussing my message with the doctor.  They apparently pulled my medical file and looked it over. The doctor is "concerned that it very well could be a recurrence of Phyllodes" and wants to see me "asap", so I was given an appointment for Monday at 11:00AM (central usa time).

The nurse told me some of the things I already knew regarding chances of recurrence, chances it could be another low-level malignant/benign Phyllodes, chances it could be a more malignant tumor (mid-level or highly malignant metastisising) etc. etc. She said that I was doing the right thing by getting it checked out and said with my history it needs to be done.

So I am now a tad more nervous and scared.

To have a cancer doctor say he is "concerned" and "wants to see you ASAP" is a little unnerving. Though it is still possible this will turn out to not be a phyllodes, so I am holding on to that and doing what the doctor wants me to do.

I am still very very scared.

Thursday, March 8, 2012

Scared ..cancer recurrence?

Can I just hide behind the sofa now?

If you read my entry for Tuesday, where I talked about my doctor's appointment on Monday you'll know that when I asked my doctor about the cat scan results he said there was nothing spectacular going on with my spine and that my pelvis/SI joints came back as he expected. Yet again I am glad I do not totally trust my doctors on everything. I trust him to a point, same as he trusts me to a point. But from my experiences I have learned that doctors are very very busy, and as a result miss things, forget past illnesses of their patients, or flat out ignore them.

Yesterday, Wednesday, I received a copy of the cat scan results in the mail as I requested. (which was a pleasant surprise since I was expecting the receptionist to forget her promise to put it in the mail) Reading the report I came across something I hadn't heard of before, intraosseous hemangioma on my first lumbar vertebrae (L1). So I looked it up. Intraosseous means "on or within the bone" and hemangioma means "growth containing endothelial cells and blood vessels". So basically this means I have a growth of some sort (tumor) on my vertebrae at L1. What I read went on to talk about the various tumors an intraosseous hemangioma can turn out to be, many are cancerous (and yes Phyllodes is included) and a few are not.

Now I understand my doctor has hundreds of other patients and as a result it is difficult to remember every little thing their patients have been diagnosed with in the past. But to forget your patient had a rare cancerous tumor removed 18 months ago? Then to not even mention this growth when giving the test results seems wrong to me.

In June of 2010 I had a cancerous tumor called a Phyllodes tumor removed from my right breast. These are very very rare tumors, coounting for less than 1% of all breast cancer diagnoses in the USA. When they do recur as a spreading (metastasis) cancer, they most frequently show up on the lungs or the spine. They are not the usual breast cancer in that they are not ductal or lobal, they are a connective tissue tumor. Also they do not spread via the lymphatic system as most breast cancers do, they spread via blood vessels and contain endothelial cells. Endothelial cells are the cells which make up the lining of blood vessels.

I did inform my pain management doctors of this tumor and its removal because it meant I was having surgery. I did inform them of what little is known about these tumors, including that they do not respond to chemo or radiation and the recurrence rates etc. etc..I did not get additional meds for post surgical pain as my regular meds should have covered it, but I still had to inform them I was getting surgery. They were also informed that a benign/low level malignant Phyllodes tumor counts as a cancer diagnosis and if it recurs it can do so as a more malignant tumor and when they do they usually appear on the lungs or the spine.

Taking that into consideration do you think it might have crossed the doctor's mind that a tumor on my spine MIGHT be something he should mention to me and recommend I have it checked out considering the similarities between a hemangioma and a phyllodes tumor and considering I have already had a rare cancerous tumor removed 18 months ago?

I say HELL YES to that question. Instead I had to find out by demanding my own copy of the written report.

So now I am scared.

I am hoping that it is not a recurrent phyllodes tumor that chose to pop up on my spine because that is pretty scary. I know the chances of survival regarding a recurrent and spreading phyllodes, which this would be a metastisis since it is on my spine not the same breast. I know the chances of it being another low level malginant/benign Phyllodes. None of it is real encouraging or very good. But the only way to find out is to have it removed and biopsied since you can't tell a phyllodes from a non-cancerous tumor without a biopsy. (They very frequently come up with a false negative for cancer result on needle biopsies.) You would think that a doctor would tell their patient, specially one with my history, that an abnormal growth (aka tumor) has appeared on their spine.

I see my primary care doctor to get the ball rolling for a biopsy next Wednesday.

Please please please God, not cancer ok? Or at least, not malignant Phyllodes ok? please? pretty please with sugar on top?

I need prayers and well wishes that this turns out to be nothing, if you wouldn't mind.

Thank you.

Tuesday, March 6, 2012

Yesterday's Doctor's Visit

Yesterday was my pain management doctor's appointment and since Ron (my husband) was home he went with me. When the doctor finally came into the room it started out as usual, him not really looking at me but focusing on signing the prescriptions the nurse had filled out. Though he was a bit surprised when he entered the room to see my actually laying on my side on the examining table.I usually do not do that, instead I tough it out sitting in the chairs and do my best to hide my pain level. I choose to hide showing it physically because  I am afraid of being accused of lying or acting it up to make it appear worse than it is. Both are things I have been accused of by doctors in my past and 2 different nurses in my current doctor's office. I was hurting a great deal, finally gave in and laid down to get the weight/pressure off my left hip. I couldn't stay laying down for long cuz the right side started to hurt even more, so I had to sit up for a bit and when that started to hurt too much (after a minute or two) I would walk around the room; rinse and repeat. This prompted some questions, which I answered honestly, but he didn't comment on my replies.

I asked about the results of the cat scan that was done in January and was told there was nothing he did not expect regarding my sacrum and SI joints. He then said there was nothing exciting about my lower back either. Since I didn't get to read the report I don't know if that means everything is pretty much the same since the last cat scan (which showed the herniation at L5-S1 and bone fragments within the broken left SI joint) or  if it means that what new stuff did show up is what the doctor had been expecting to see. I like it much better when the doctor actually goes over the written results with me so I can ask questions.

Then the mobility evaluation was brought up. The doctor started to say that he didn't want me to have a power chair and that's when Ron started speaking up. The doctor had been getting ready to leave the room when Ron spoke up, instead he sat back down, crossed his legs and actually *looked* at Ron. He told the doctor that I've been in bed for months, that my pain has been real high, that I fall frequently and that I can't walk from my bedroom to the kitchen without having to sit down in the kitchen doorway or possibly falling. I said that I had been telling the doctor all of this for months, all about the new symptoms and how I can't stand or walk for more than 3 to 5 minutes. I went through it again, describing exactly what happens when I stand for 5 minutes. At minute 2 or 3, I get the sharp stabbing pain at the top of both SI joints and my lower back starts to scream and the sciatica symptoms start. By minute 4 my legs are shaking, shooting pains are going through entire pelvis, down both legs, and up my back. If I continue to stand after that starts, at minute 5 my leg gives out (usually the left, but sometimes both) and I fall. I've tested this many times, timing it as well, and that is the progression. I told him that I have been telling him this for months, which I had. But since I haven't been able to read my medical record, I can't say for sure if he put it in there. I'm pretty sure Ron, the PA, did though because I heard him speak into his tape recorder after a visit with him. (This was a few months ago, before the office stopped using physician's assistants)

The doctor looked down at my chart and started flipping through the pages and he had a slightly sheepish look on his face. Ron then asked me to tell the doctor how many times I fall in a week, so I did (the answer is 2 to 3 on average). The doctor asked if the injection they did helped, and I told him no, which it didn't help and I wasn't expecting it to. They haven't helped ever since I did that fundraising stuff for Kyle's friend, and suffered that fall on Christmas Eve 2010, when I landed on the edge of the arm of that heavy solid wood chair that Ron's dad built. The corner hit the scar over my left SI joint and my right SI joint hit the edge of the desk as I went down.

The doctor checked my reflexes by tapping on my knees and my ankles. My left leg jumped just a little, which surprised me. But when he tapped my right knee, it became obvious that my left leg did not respond the way it should have. It moved just a little, whereas my right leg jerked very noticeably. The same reaction occurred with my ankles, though my left foot barely moved at all. My right foot strongly jerked in response. I could feel the difference too. He didn't say whether he noticed it or not, just but the little reflex thingy back on the counter (it wasn't a hammer, it was a circle on the end of a handle).

The doctor ordered that I undergo the mobility evaluation for the power chair. This is GOOD!

 He then decided it was time to get the prep work done for radio frequency in June or July (when my year is up). He says my record shows I had radio frequency this passed summer, but I don't remember having it. I remember getting injections, but not RF due to insurance issues. I had been told my insurance would only pay for 1 RF procedure per year, not the 4 that I need (2 in lower back, 2 in pelvis). The doctor explained that the insurance company will not pay for more than 1 RF procedure to the same area in one year, but they will pay for more than one procedure to different spots and as long as they don't repeat any of the spinal levels, I can get all 4 sections done. He then said he wanted to go ahead and set up the diagnostics and filled out the order sheet for those. So I am all set for the diagnostic part of radio frequency in April. This way we can just order the RF in June without having to do the diagnostics and making me wait any longer than I already have. This is GOOD!

I mentioned to the doctor that I had purchased some books that are designed to help people suffering with chronic pain to learn techniques to help them cope with it. Some of these things I already do, such as meditating, deep breathing, visualization, and pacing myself but I figured it can't hurt to read them and see if there was anything new I could try. I told him that the book had a paper that lets the patient keep a pain journal and I would start doing that. A pain journal is a daily record of my pain levels. I will fill it out 3 or 4 times a day, writing down pain level by number, what activities I did that increased the pain, and what treatment methods/coping mechanisms I used to help me deal with the pain. This will give him a record of how I experience my pain on a daily basis. He seemed very pleased by both of these things. These are GOOD!

Ron then mentioned this blog and the doctor wrote down the URL. I don't know if he'll actually read it or not. If he does, I hope he isn't expecting daily postings with multiple reports of pain numbers throughout the day etc., like a pain journal. This blog is more for me to get out my thoughts, feelings, and experiences as it pertains to my constant pain (I still think that is a better descriptor than chronic pain). Even though it doesn't give the same day by day accounting as a pain journal does, it can provide the doctor with a better idea of how my pain has been affecting me and how I've been stuck in bed for months and how I am coping with it. So this is GOOD also!

I was saddened by the fact that everything that was said yesterday has been said by me alone for the past 9 months, yet it wasn't taken seriously until Ron was there and said the same things.

I understand that doctors, specially pain management doctors, have to be very very careful now thanks to the DEA's war on doctors and chronic pain patients. I understand that they have to be watchful and careful so they don't give a prescription to someone who turns out to be an addict. I understand that they are working under the threat of not only going to jail and losing their license to practice medicine, but also under the additional threat of losing everything they own. I understand where the doctor is coming from, I really do. But I can't help but feeling upset that (it seems) I was not believed until my husband talked to the doctor.

I think it is very wrong that doctors now have to assume their patients are exhibiting drug seeking behavior when all they are doing is what they should be doing, describing their symptoms to their physician, especially if those symptoms have changed. I think it is wrong that a patient has to bring in a witness to be believed. I am sure that this must frustrate the doctors as well because it interferes with their ability to develop a respectful and trusting relationship with their patients. All these new regulations and rules interfere with the doctor's ability to help people, which is usually why a person becomes a doctor in the first place.

Don't get me wrong, I like my doctor a great deal. He is understanding and genuinely wants to help me control my pain. If I didn't like my doctor I wouldn't have remained a patient of his office for the past 9 years. It is just frustrating to see how pain management has changed over those 9 years, to what it has become, as a result of the war on doctors. I can only imagine how much this must upset my doctors as well as it upsets me.

The Cycle Of A Chronic Pain Patient

This is a great article on how chronic pain is treated through "pain management". In my state, as I've posted before, things have gotten even worse. Read this page carefully:

Painopoly written by Back Pain Guy at "Two Pain Patients" blog. This is copyrighted to them so to read it you have to click the link. It will open in a new window so you can then return here and see my comments about this article.

This is an attempt at making the gauntlet chronic pain patients must go through every month to get their medications a bit humorous, while also informing the reader of just how difficult it is for most to obtain their medications. This is the same gauntlet I have been running for the past 16 years, ever since my pain severely increased while I was pregnant with my son resulting in the broken SI joint I now live with. The gauntlet has gotten more difficult thanks to all the negative fear mongering hysteria based reporting about pain medication. I'm going to make some comments about this article.

The author gives 3 pieces of advice about not taking how we (CP patients) are treated personally. Try not to take the statements made my relatives, friends, and everyone else personally. Try not to take the fact that you are required to undergo mandatory urine drug testing personally. These are good bits of advice, but sometimes so very hard to follow. For me it is getting more difficult thanks to the laws passed in FL that have removed some trust from my relationship with my doctor (I will write more in another post, it is good but also very sad, annoying, etc.) Having family and friends make statements that they believe you are an addict, putting you in the position to once again having to explain the difference between psychological addiction and physical dependency is not fun at all. This continues to crop up whenever there is a media "Frenzy" about prescription pain killers. It is hurtful to hear loved ones say those words to you and it is hard not to take it personally.

The mandatory drug testing is also difficult to not take personally because of the unspoken (but heavily implied) accusation that you are doing something wrong. It does not matter how many years you have been with the same doctor, you still have to piss in a cup. It doesn't matter how many years you have never shown any signs of addiction, you still have to piss in the cup. It doesn't matter that every urine test you've had always shows you are doing nothing wrong, you still have to piss in a cup. Why? Because you just *MIGHT* do something wrong and the doctor has to cover his ass against the DEA. For me, my insurance company pays around $300 for each of these tests. So much for lowering health care costs. Because these tests are required, no matter what your personal history consists of, the necessary trust between Dr. and patient is eroded by this unspoken fear you will become an addict. Add in how easy it is to fail one of these tests (due to false positives as a result of certain foods, or other medicines, plus other reasons that are not related to the test results but still count as "failing" and thus dismissal from the practice) and it gives the patient an increase in anxiety levels and the subconscious thought that their Dr. thinks they're an addict or making stuff up. So yes, it is hard not to take this personally.

The small sub-paragraph that talks about the "Mini Game" touches upon how patients are treated by pharmacies, and how exact the prescriptions have to be in order to be filled. You can NOT fill 1 day early, it must be filled exactly (for me) 30 days from my last prescription. Which really sucks if your pharmacist can not tell the difference in days that occur when a month has 31 days in, rather than 30. As a result your refill date will be 1 number earlier than last month because that is 30 days. Some pharmacists will also talk very loudly, violating your HIPPA rights by making sure everyone in the pharmacy knows you are trying to fill a narcotic, this causes you to be given dirty looks or even verbally harassed by other customers as they assume  you are trying to fill an illegal script. This can also cause muggings if someone in the pharmacy is only there as a lookout for their partner (in the parking lot), trying to spot whoever picks up a controlled substance script. I am lucky to have found a pharmacy that doesn't treat me this way, but I have experienced this crap in the past.

Now comes the actual "game" of painopoly. Read carefully and you'll notice that the author gets dropped from treatment by a pain clinic because he had a 10 day script filled by his primary care doctor, while he was trying to find a new pain clinic to see him. When you are BETWEEN pain management doctors (meaning you are not actually a patient of one) it is NOT doctor shopping to get medication from your primary care doctor. hough in FL it is now not allowed at all, primary care docs can't write for pain meds anymore so if you're in between for whatever reason, your screwed. Doctor shopping is when you get scripts from more than one doctor, at the same time, covering the same time period. The fact that the author ends up losing the pain management doctor he finally got in to see, because he got a short term (10 day) temporary script to hold him over (and out of withdrawal, and was out of meds by the time he saw the new pain doctor) while waiting to see the new doctor, is very common.

There are so many things I want to say in response to this blog post by Two Pain Patients, so I think I'll write a series of essays in response to the many many valid points that are raised in this essay. Until then, I'll leave my comments where they currently stand. But please, click the link and read about painopoly, it is a very accurate representation of what chronic pain patients are forced to endure. This is how it has been ever since I went to my first pain management doctor, in Arizona when I lived there, back in 1999. Over the 13 years from '99 to 2012, it has only gotten harder to receive medications, not easier.

The government and law enforcement agencies are targeting the wrong people in their attempts to cut down on prescription drugs on the street. The majority can not be coming from a doctor's prescription since it is so difficult to get a prescription in the first place, and gets even harder every year.