Video Blogs on YouTube

Thanks to it being more difficult for me to sit up for long periods of time, I decided to start doing video blogs (Vlogs) on You Tube. I did a group of videos that basically give my history of chronic pain and how I got to where I am today. Since that story has already been told on this blog in the post 30 Years Of Chronic pain, I won't include that videos here. However, I will post other videos to the blog for people to watch if they want to.

I did one the other day about safety with medications. I also did a written post on this blog for the same topic, so I don't think I need to link that video. However, today I started a series of videos on judgements. Since people with chronic illness and / or chronic pain are judged in many different areas, I have chosen to do this topic as a series of videos. For the first one I chose the topic of how chronically ill people and people who suffer from chronic pain are judged for their diagnoses such as being told that illness doesn't exist, it's all in your head, you don't look sick and more. I hope the video is educational and of value to people who watch it.

I also made a request of viewers and I wish to make the same request of my blog readers also. So here is the video explaining my request.

Thank you everyone!

Taking Proper Care of Prescription Medication(s)

Many chronic pain patients are on different medications. Some are for the pain and others are for the condition(s) that is/are causing the pain and or depression. Many of these medications can be controlled substances, or have a street value as addicts have found they can give the “high” that they seek. Surverys asking teenagers if they have taken medications out of a family member’s medicine cabinet have shown that many teenagers have done just that. Also there are “parties” out there called “pharma parties” (aka “candy dish” or “trail mix” ) where people dump different pills that they get out of those medicine cabinets then just take a handful in an attempt to get high. These parties have resulted in overdose deaths from heart or blood pressure medications or even narcotic pain medications, psychiatric drugs, etc. all being mixed without any knowledge of what they are doing.

It is a chronic pain patient’s responsibility to keep their medications safe from theft. The best way to do this is to keep the medications in a locked box or safe of some sort, not in the medicine cabinet in the bathroom or a cabinet in the kitchen. All medications should be stored in a locked box or safe. If more people took their responsibility seriously less thefts of their medications would occur. As a chronic pain patient here are some tips to keep your medications safe.

1. when picking meds up at the pharmacy, be careful to not advertise that you are picking up pain medications. Always check to be sure the medications are correct before leaving the pharmacy.
2. put the bottles in a locked box or safe and make sure that you do not share the location of the key or the combination with others. Do not leave the lock box in plain sight either.
3. remove labels from all empty prescription bottles before throwing the old containers out (or reuse them to store small items such as screw, nails, beads for crafts etc.) or recycling them
4. shred the labels to ensure that someone going through your trash can not read the label and know you are on pain medication
5. shred pharmacy receipts that list the names of your medications for the same reason as number 4
6. Do this for all medication, both prescription and over the counter

By protecting your medications in this manner, you greatly reduce your chances of having your medications stolen by a family member  or friend. You also decrease the chances of drug addicts finding out what medications you are on by going through your trash.

You are responsible for how you handle your medicine and being careless is not an excuse, especially in today’s political climate of removing pain meds from people. The more often you have to call for lost or stolen medication, the more likely you will be labeled as an addict or diverter of your drugs. Now, just a single instance will be enough to be labeled and having your pain control revoked. So take your responsibility seriously.

Anyway, these are the things I do to protect my medicines, both prescription and over the counter. If I am missing anything, or anyone has ideas on better protections, please feel free to comment, or email to let me know!

What NOT to say...

People who live with and suffer from chronic pain and chronic illnesses often hear different statements. Some are intended to be helpful and kind. Others are meant the opposite way, often it seems (to me anyway) that the people that makes such mean comments are almost trying to protect themselves from an illness or pain by distancing themselves from the sufferer they are speaking to.

Below are some videos about things NOT to say to someone who suffers from a chronic illness and/or chronic pain.


This first video is from a young woman in England. She suffers from a great deal of pain every day as a result of damage to her back. Through her YouTube videos I have gotten to know her a little bit and she is a truly warm and wonderful person. Sara, without even knowing it, helped me a great deal in the past 6 months. I have watched and re-watched her videos, especially the ones where she was still a student in college (University). She is a pharmacist, which is what I had been ready to start college for if my back hadn't blown out a month before school started. Her determination to make it through school and still do her best was very inspiring to me. Being someone who lives with extreme low back and pelvic pain I can totally relate to how much pain she was living with, struggling with, and barely making it through each day with. But SHE DID IT! She graduated! I am so very proud of her for doing that because I know how hard that had to be. Anyway here is a video she posted titled "Things to think twice about before saying out loud to someone with chronic illness" 

This second video is by a young lady who suffers from Interstitial Cystitis (IC). This is an extremely painful disease that affects a large number of people, though most (doctors included) have no clue it even exists, or they have very faulty information. Ir causes severe abdominal pain (much of which is centered around the bladder), severe pain with intercourse, frequent urination, and frequent strong urges to need to go to the bathroom. There are other symptoms as well, but the biggest one is PAIN. Lucky for Amy she had a stimulator placed which has helped her a great deal. She has been able to return to college and is hoping to become a Urologist. 

Please, when you are talking to someone who has a chronic illness and/or chronic pain, please think twice about what you will say. Take a moment to put yourself in their shoes and then say things that will be supportive and helpful rather than dismissive, hurtful, and judgemental. None of us ASKED to be sick or in pain, yet here we are and just doing the best we can day by day.

More Reading and Thoughts

I am continuing to read the book The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. It looks like there is going to be a lot of record taking. Tracking pain levels through the day, as well as graphs for activities and pain level on the same graph (to show correlation between the two), tracking flare ups daily, and weekly, as well as individual write-up for each flare. The idea behind all of this tracking is a good one and I am sure it will help because I agree with the statement that the more I know about my pain and how it affects me, the easier I will recognize areas that I can change to gain better control and less pain. But wow does it look rather overwhelming to just keep all those charts every day, almost a job in and of itself LOL 

I've gotten to the part about setting goals, I am thinking I will set 2 to start with. The first is to help me feel like I'm actually achieving something every day, so I will try to do at least 1 to 2 loads of laundry per day. The second will be to fill out all these charts LOL 

Because my depression and apathy are so deep, and my ability to move around is so low, I am taking the advice from one of the other books regarding pacing from a place a being bedridden. It basically said that I may have to start out with something very small, that someone else may not see as a big deal, but since I've been doing almost nothing for 18 months or so now, it is a big thing. It is important to help re-build the desire to fight again, to get better, especially for those like me who are coming at this from a place of having given up and letting the pain run my mind and my life for so long. This will take a while, one small thing at a time because if I try to change lots of things at once I will set myself up to fail.

Interesting statement I just read. I did some of the exercises that are on the book, on the website for the book. I did one about activities and avoidance of those activities due to pain. There were a couple that have not changed due to my pain. The comment was that even though I am thinking I do nothing, those couple things prove that this is not true, that I am still doing something. When I read that it kind of gave me a little jolt, one of those "duh! Missy!" jolts. I've been so focused on what I haven't done every day, that I ignore what I have done.  

Gosh I feel like I'm having to learn how to live all over again. hmmmm...I guess in some ways that is exactly what I am doing. 

My pain wasn't too good today. We have bad weather this week and stronger weather moving in today, which is what woke me at 4AM. All the muscles in my back and pelvis were tight so I took muscle relaxers and applied the heating pad, which has helped. I also took my meds, which has helped as well. I did some mild stretching that the physical therapists taught me to help release the tension in my back and pelvis muscles, this also helped. I did some breathing and am refusing to let myself think the catastrophic thoughts I usually have running in my head. I'm sitting at a 7, but it is not rising like it normally would be. Instead of just letting it run rampant, I tried doing things to help control it and it is helping. Usually when I wake up this way, by this point (2 hours later) the pain has gone up. But so far, I am controlling it and who knows, if I continue to do that I might actually make it go down and not hit a 10 (pain crisis) when the thunderstorms go through today. Does this mean that I am doing it? I think so!

Today will have to be a rest day with the exception of filling those forms.

My brain is still working over the fear. I will probably do some stream of consciousness writing in my written journal to see what comes out, then hopefully I will be able to post something here in a couple days that talks about more reasonably than stream of consciousness writing allows.

Edited to add at 6:47AM: I just took the test about how my husband's response to my pain issues affects me and possibly our relationship. Finally, a really GOOD score! It asked me to rate by frequency on 0-10 how often he does or says things like "Your pain interferes with my life", "you can't be in as much pain as you say" and similar negative things. It then asked me to rank whether I liked or disliked when he says those things. For the entire list I got to say 0, because he doesn't say those things to me. This doesn't mean that he never talks about being frustrated or concerned, but he never throws it in my face, tries to make me feel guilty, or anything like that. He has been so immensely supportive, understanding, and helpful. We've talked about this many times, and he does express that he occasionally feels a twinge or frustration or similar emotional reactions, but it doesn't go beyond that twinge because he knows this is not my fault and he loves me the way I am.

It felt good to get a good score on something! LOL

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.

Cartesian Model and Gate Control Model of Pain

Living with chronic pain is extremely difficult. With new research have come new ideas and understanding about how pain works. Sadly physicians, people in general, medical personnel etc. are still being taught an outdated model for pain. That model is the Cartesian Model of Pain. This basically says that all pain is a direct result of tissue damage/injury and every person will respond in the exact same manner to the same injury. In other words a broken bone gives a certain amount of pain and every person will have the same amount of pain as a result of that injury.

Research has proven this to not be true. PET scans and fMRI's have shown that the parts of the brain responsible for pain sensations light up even when no specific injury/illness can be found for that patient. The Gate Control Model Of Pain (by Ronald Melzack and Patrick Wall) says there is a gate, the spinal cord, which allows pain signals to travel to the brain. When that gate is closed, no pain signals get through. When it is open, pain signals get through. Further they have shown that the gate can be opened by injury, emotions, mood, thoughts and memories.

The Gate Control Model makes sense to me simply based on my own experiences with my pain. Most CP (Chronic Pain) patients know that stress, levels of high emotions, focusing mentally on their pain and more directly affect their pain levels. We often tell each other about how high stress levels, anxiety, depression and more will increase our pain. We say this because we have experienced it. I know that when I get angry, my pain rises. I recognize that when I am angry my body tenses resulting in my muscles tightening which leads to spasms, pressure on the injured areas and results in an increase in my pain.

Despite the research showing that psychological and social factors contribute to a patient's experience with pain, most physicians and other medical professionals, still work under the Cartesian Model because that is what they are taught in school. Most physicians do not receive training in chronic pain, or pain management. Instead they are taught the scientific method and as a result see pain as a cause and effect only so far as physical disease/injury (cause) results in pain (effect). Many do not realize that other issues also effect pain. This is not good as the result is that people who live in chronic pain are not receiving the optimal therapy for their pain. They are not being taught things that will help them manage their pain.

It doesn't help that most people also have outdated ideas of how to deal with chronic pain. We are not taught that chronic pain exists. Most people's experience with pain is acute pain. You sprain your ankle, rest it and allow it to heal. This works for acute injury, but does not work for chronic pain. In fact this method of dealing with chronic pain will make the pain worse. Included in the area of what works for acute pain but not chronic pain are "no pain no gain" and "push through it". These beliefs actually cause more mental anguish and suffering for chronic pain patients.

Chronic pain is affected by the original injury or disease (and progression of same), the people around you, your own thoughts/beliefs about pain, and more. So far the most effective treatments for chronic pain have included methods which include all these areas, rather than choosing one or two and ignoring the rest. Many do not believe that mood (for example) affects pain but consider this: You have had a bad day at work, your mood is not good, and by the time you get home you have a headache. Most people have experienced this. Part of the reason is that the area of our brains which control our emotions, is one of the areas that lights up in response to pain signals. In a person with chronic pain those stressful emotions can trigger pain signals and vice versa.

Ok, this entry has focused on factual information. Now I am going to write a more personal entry.

New Month

Well it is already April of 2012. Get a little older and time goes by so much faster, at least it seems to anyway. Ron had to go to Indiana for a funeral and I could not go with him for a few different reasons. My son was supposed to have surgery on Friday (doctor cancelled it), and I don't have enough meds to make such a long car trip. So Ron told me to stay home. I feel guilty as hell for not going with him. Neither one of us sleep well when the other isn't in the bed.

While he was up there he told me he kept waking up at night because he would reach out looking for me and wake up when I wasn't there. One night he said he almost fell out of the bed because he kept rolling over, trying to find me and woke up on the edge (Opposite side from where he went to sleep) of the mattress. I just didn't sleep more than 2 to 4 hours each day he was gone. So when he got home yesterday, we pretty much spent the time in bed sleeping off and on. I slept all night, which for me is a miracle as I never do that. I usually wake up a few times at least, but not last night between 11PM and 7 AM this morning.

Other than that not much has been going on, same shit different day.

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.

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!

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.

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.

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.

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.

Interesting Information re: war on doctors in FL

These new laws in Florida are having a major impact upon legitimate patients who need pain medications for real illnesses and injuries such as cancer, lyme disease, elher's danlos, severe damage to the spine and more. They are being denied pain medication when they present a legal prescription to the pharmacy, even those who have never shown any drug seeking/addictive behavior. Even patients who have filled at the same pharmacy for years (exactly 30 days apart, always from the same doctor; following all the rules), without any incidents such as demanding early refills or saying they lost their meds, are being turned away.

The statistics

Some pharmacies are refusing to bill insurance companies for narcotic prescriptions ( and only the CII scripts; they'll fill and bill for anything else for the same patient), demanding the customer pay cash and charges anywhere from $6.00 to $15.00 per pill.

http://www.sacbee.com/2012/02/01/4232649/pain-clinics-pharmacies-deny-pain.html

As a chronic pain patient I have no problem following all the rules, am seen at the same doctor's office that I have used for the last 9 years, use the same pharmacy for those same 9 years (for all meds), pass all my urine and blood tests for medication levels etc. etc. Yet now I have to worry that I will be refused my medication without cause by the pharmcy or the pharmacy demands I pay cash when I have insurance and they've always billed the insurance until this month?


The government is using false statistics. Anyone who dies with a narcotic in their blood stream is included in their counting of deaths via these drugs, even when the drugs weren't the cause of death. They are not reporting that many of these deaths are by people with histories of drug abuse and with MULTIPLE drugs in their system, not just prescription pain killers. So long as there is a prescription pain killer in the person's system they are counted as a drug overdose to that medication, even if they died from a car accident, or combination of illegal drugs/alochol with the prescription medication. This is misleading people on purpose!

http://www.huffingtonpost.com/radley-balko/us-painkillers-abuse_b_1263565.html

http://www.stats.org/stories/2012/attack_painkillers_misusing_statistics_jan31_12.html

http://stats.org/stories/2008/new_study_expose_oxy_plague_jan25_08.html

"the opioid issue looks very different when you examine the numbers closely. For one, the rates of Americans addicted to OxyContin, Vicodin, percocet, fentanyl and other products in our synthetic narcotic medicine cabinet are not rising. In fact, they have been steady at 0.8% since 2002, according to the government's own statistics."

http://www.alternet.org/media/153910/the_dangerous_panic_over_painkillers-Elin

"fewer than 1% of people over 30 (without a prior history of serious drug problems) become an addict while taking opioids; for chronic pain patients who are not screened for a history of previous drug problems, the addiction rate is 3.27%. That means, of course, that more than 96% do not become addicted."

"these statistics usually go unmentioned in media accounts because they do not confirm the preferred panic narrative. Also left out is the fact that around 80% of Oxy addicts (a) did not obtain the drug via legitimate prescription for pain and/or (b) had a prior experience of rehab. Their contact with the medical system—if any—was not what caused their addictions."



(same link as above)


2010 National Survey on Drug Use and Health states that ,"non-medical use" of prescription painkillers in the last year among people aged 12 to 25 has actually dropped since 2002.

http://oas.samhsa.gov/NSDUH/2k10NSDUH/2k10Results.htm

It is really sad that my constitional right against illegal search and seizure has been removed with this new FL law. Any law enforcement official can now go into my doctor's office and say there is an investigation and walk out with a copy of my medical record, WITHOUT A WARRANT and without proving their is actually an investigation. Courts have upheld the idea that law enforcement can lie to people in order to get information. This new law removed the need of a warrant to obtain medical records for any patient who received a prescription pain medication.  Why is this allowed? because I am a chronic pain patient who takes opiates, so I don't get the same rights as others anymore. Why isn't this allowed against diabetics who can give away their needles or have them stolen by IV drug users? Why isn't this allowed for high blood pressure patients or any other patient in need of a maintence medication (med taken daily to control disease/illness)?

The other thing that is not making it into the news reports is that the vast majority of the "pill mills" (walk in, pay $200 bucks walk out with a bottle of hundreds of narcs) are already gone! Most of them have been gone for a year now. The DEA has shifted focus to any doctors who prescribe pain medication. They are also not reporting when trucks that are transporting the drugs are hijacked or robbed, nor are they reporting on the number of drugs that come from other countries such as Mexico. Instead they are focusing on doctors and pharmacies. As a result doctors and pharmacies fear treating pain and turn patients away, drop them from their practice, or just refuse to give them their medication.

Did you know that a patient going through narcotics withdrawal who also has high blood pressure is at a higher risk of dying from a stroke or seizures during withdrawal? This terrifies me! My possible death doesn't matter, so long as the people who CHOOSE to engage in illegal activities are saved from their own CHOICES.

Law enforcement should not be allowed to decide what appropriate pain treatment is for a patient, that is the doctor's job.

Anywhere from 75 to 116 million (depending on whose statistics you read) Americans live with chronic pain, yet we no longer deserve our constituitional rights or proper medical treatment because of the choices other people make.

It is NOT the doctors fault, nor the pharmacists' faults, that some people choose to take these meds and get high off of them. They should not be penalized for the choices people make.

As usual it is the chronic pain patients who are being denied proper medical care and suffering. Many of us won't speak out about it either. Why? Out of fear of being labeled a drug addict and losing what little pain control we do have (if any at all). Thus we are intimdated into losing our right to free speach because if we speak up, we are said to be "drug seeking" and "addicts" and lose medical treatment.

I am so scared. My doctors are scared.

Florida Gets Worse For Chronic Pain Patients

Florida has become even worse for a chronic pain patient. So far removing our rights to privacy of our medical records, insisting on drug testing, telling us which pharmacies we can go to, primary care doctors no longer allowed to write controlled substances or treat pain, dose and time limits on pain management after surgeries (based not on condition of patient but dea guidelines), removing our constitutional rights regarding search and seizure (allowing police officers or federal agents the right to take our medical records without a warrant), requiring we only use one pharmacy at all times, and more is not enough for the government apparently. I've written before how chronic pain patients are losing their rights, especially in Florida. This is just one more thing in that direction.

Now pharmacies in Florida are actually refusing to fill legal prescriptions for pain medications! Some of the stories are simply the pharmacy refusing to fill the prescription outright, but others are much worse. One patient had a pharmacist demand to see her medical records and x-rays/cat scans/MRI films to prove she had a condition that required the medication. Other patients were lied to by the pharmacists. They were told by a pharmacy worker that the pharmacy was out of the medication and when they went back a couple hours later (on a hunch and because they are only allowed to use 1 pharmacy) they were told the pharmacy had plenty at the time and that the pharmacy's stock of the medication had been fine for weeks.

There is a petition, started by Donna Ratliff of the American Pain Foundation Florida can be found here:

http://www.change.org/petitions/florida-pharmacies-stop-florida-pharmacies-from-denying-pain-patients-vital-medicines

The goal of this petition is to get the pharmacies to stop refusing to fill legal prescriptions. Please take a few minutes to read the petition and the comments made by those who signed it, then sign the petition!

Chronic pain patients are NOT drug addicts and we should not be treated as such!

A good loss of pride

My eldest niece has come to live with us. She is 17 and a wonderful girl. Last night we needed to go to the store because she needed some clothes for school that meet the uniform based dress code. I'm not sure why but when she mentioned it something in me jumped up and seemed to yell "I WANT TO GO TO THE STORE!". This surprised me because I have not wanted to go to the store in a while since walking around really hurts. Also I have refused to use the little electric scooter type carts in the stores. The idea of using one made me feel embarrassed, humiliated, and afraid everyone would be looking at me. I know these are stupid reasons for not using an item that is meant to help my mobility and thus retain (or regain) some of my independence. Ron said I could go to the store but I had to promise to use one of the electric scooters and I agreed.

On the way to Wal Mart I was nervous and felt a bit defeated, but I was also so happy to be out of the house for something other than a doctor's appointment or procedure. So when we got to the store I chose a scooter and sat down. I read the directions and was happy to see how easy this thing would be to use.

This is not exactly like the one I used but very very close. Anyway, I used the scooter and at first I felt a bit embarrassed but I was surprised to find that it passed quickly. It was replaced with this wonderful feeling of freedom and happiness! I was shopping and could zip around the entire store without all that severe pain I now get when I walk or stand for more than 3 to 5 minutes! I was ecstatic! Heather and I got quite a few laughs out of it as well. They take a bit of getting used to for things like turning and backing up. I kept backing up on accident, or hitting a rack when I turned. At one point I accidentally pushed the end cap of one aisle out from where it was supposed to be. Heather put it back for me. I was a little embarrassed when I did that, but mostly I laughed at my mistakes and just enjoyed being able to go all over the store without hurting myself.

It was fantastic! Getting a taste of the freedom and independence I could have if I owned a scooter erased all my stupid reasons for not trying to get one before. Those reasons all boiled down to pride. Now I want a scooter, so I am going to find out how to go about getting one. Either a scooter or an electric wheelchair, something so I can have my independence back a little.

I am very proud of myself for finally trying the scooter. I also feel really stupid for not trying it sooner!

Here's hoping I can get one.

Changes and Getting Stuff Done

As I have mentioned before my brother, Brian, lives with me along with his fiance, Stephanie, and their daughter Bridgette. Brian's eldest child moved in about 5 days or so ago. She is 17 and her name is Heather. She is a sweet, cute, lovable, intelligent person. I'm not sure why but since she arrived I have had more energy to do things than I've had lately. I've spent more time in the living room in the past couple days than I have in months. I've greatly enjoyed talking with her as well. Maybe this response in me is a result of having someone new in the house, which brings new energy. I had a similar response when Stephanie and Bridgette moved in 4 years ago, then again when Brian arrived.

I've been battling with my depression and the apathy it causes for a while now. Both got worse after the yard sale I ran in April 2011 because my pain got a lot worse. It is so hard to struggle against depression and the apathy it causes. It takes a great deal of energy and most of the time I just don't have that energy. I just can't summon the energy. Even worse, I can't summon enough emotion to actually care to do anything. I know this just makes things worse. I know that part of fighting depression is to choose to do things even when you don't want to because medication is not always enough to remove depression.

Well for the last 5 days or so it has been a bit easier to actually feel the desire to fight back and to do things. So I took advantage of it. Yesterday I went through the piles of mail that was sitting on my night stand and some on the desk in my room. Since I pay my bills online, I tend not to open the ones that have the same payment amount every month (Mortgage, car payment etc.). Since I now keep the payment information, including the confirmation numbers on the computer in word documents, I no longer write on the bill itself like I used to. (paid, date, amount, check #) So all the papers were piled up waiting to be filed. I went through all of that, filed every thing, then put all the stuff for 2011 into large manila envelopes ready for storage. I did some cleaning in my bedroom and some in the living room, including cleaning the interior of my desktop computer. I also did our taxes for the year.

Last night was a rough night, very stressful. I did not sleep well, kept waking up from pain. I also spent a few hours talking with Heather to help her deal with things that were bothering her as well as her own depression symptoms.

Today the weather is doing the "waiting to rain" thing. The sky is completely cloud covered, it is very cool and the air smells like rain.

As a result of those three things (doing stuff, stress, lack of sleep), my pain is very very high today. I've been sitting at a 9 all day. About 20 minutes ago my younger niece Bridgette stepped on my toes (one of which is infected and hurts) causing me to lose my balance and fall. As a result my pain is now rising and I am headed for a pain crisis. I took my breakthrough meds in the hope that it will keep me at a 9 and thus avoid the pain crisis, but I'm not sure it will work. It rarely works when it is a fall that causes my pain to go up, specially if I fall on my hip or buttocks as that causes intense jarring of the bones in my pelvis that are broken. Broken bones do not like being jerked around LOL

Despite the higher pain level, I still feel pretty good mentally. I felt very accomplished and proud of myself yesterday, and despite today being a very bad pain day, I still feel satisfied, proud, and like I accomplished something. Those are good feelings. :)

Another thing that made me feel really good today was a package that came in the mail. I ordered a Nightmare Before Christmas hoodie for Heather. Kind of a "welcome home" gift. She is really happy with it and it made me feel good to know she likes it.

OK I have to lay down. sitting is just hurting far too much.

I'm hoping that I can continue to find the energy to fight back, especially against the apathy.

Re-enactment of First Appointmet with Pain Management

I made a little video of what often occurs when a chronic pain patient goes to their first appointment with pain management. This video is based on both my personal experience, and my recent research/reading into chronic pain.

Chronic pain patients are required to sign contracts with their pain management physician. Many of the stipulations in these contracts remove the patient's rights to privacy of their medical information as well as removing the constitutional rights that require law enforcement to obtain a warrant (meaning need to show probable cause to get such a warrant) in order to get the medical record. These contracts also often contain false information regarding what is drug seeking behavior, physical dependence, and tolerance to pain medication. Also they rely upon presumptive testing that is widely known to be inaccurate in order to deny treatment. Basically these contracts are set up in such a way that every chronic pain patient will eventually violate some part of the contract and lose treatment. Depression is NOT drug seeking behavior, it is a common occurrence with ANY chronic illness, not just chronic pain.

To learn more, including information about the so-called studies that the DEA rely upon to call prescription drug abuse an "epidemic" when the numbers don't support it. To learn more about chronic pain, contracts, and more:
http://www.dailykos.com/story/2011/04/06/963719/-Chronic-Pain-Patients-Lose-Their-Rights
http://pain-topics.org/ for updates on studies http://updates.pain-topics.org/

To learn more about Richard Paey, an example of the unfair investigation procedures and prosecution on chronic pain patients see here:
http://www.november.org/thewall/cases/paey-r/paey-r.html

National Pain Awareness Month?

I had not heard of this before but apparently September is "National Pain Awareness Month". It shares the month with "National Alcohol and Drug Addiction Recovery Month". It does not surprise me that they combine the two into the same month, specially since the misinformed information they give out about opiod drugs, chronic pain patients and prescription drug abuse are heavily heavily skewed towards addiction.

Why aren't support groups such as American Pain Society and others, using this designation for the month of September to educate the public about chronic pain? Especially since, depending on which study you believe, there are anywhere from 50 million to 114 million Americans suffering with chronic pain.

Maybe those of us who suffer from chronic pain and also blog or participate in support forums (email groups, posting boards etc.) should spread the word and during September try to educate others through blog posts and facebook "notes" etc. about the reality of chronic pain.

Balanced Questioning of Opiod Use and Chronic Pain

Because my doctor has found it necessary to hire a defense attorney to give him guidelines to reduce his risk of attracting the attention of the DEA and being prosecuted I started doing some reading. I have been apalled to see some of the things being reported, such as patients being arrested and sentenced to long jail terms (25 years) for taking needed pain medication obtained through a legal prescription (research: Richard Paey).

Anyway I came across a site that seems to be providing information that is not fear based, sensationalized, and presents both sides of the issues regarding opiod analgesics and treatment of chronic pain. Check it out:

http://Pain-Topics.org

Many of the articles are written by doctors, including practicing pain management doctors. They study and present the sensationalized reports put out by government and governmental agencies, pointing out inconsistencies and distortions of data. For example: more people died of alcohol related injuries than opiod overdoses yet the government isn't calling alcohol consumption an "epidemic".

Negative Effects Of The "War On Drugs" In Florida

I understand the need to fight drug dealers. I understand that they engage in many illegal activities in order to sell their illegal drugs. They steal from others. They are violent and will commit assaults and murders. I understand they tend to be dangerous people, often associated with particular gangs or other organized crime groups. I understand that Southern Florida apparently has many pain clinics, staffed by doctors, who are willing to write prescriptions for narcotic pain medications for people who do not really need them, instead they sell the drugs on the street. I understand that some of these people are allegedly well aware of what they are doing when they supply people with prescriptions for these drugs. I understand that they allegedly will write prescriptions for whatever the person asks for, in whatever quantity they ask for it, in exchange for a cash payment for their services.

I agree that these practices are wrong and are contributing, in part, to illegal narcotic drug trafficking.

However I do NOT agree with how the state is choosing to fight these so-called doctors and drug mills. Their chosen methods of dealing with this is making it impossible for uninsured people to receive the medical care they need!

In order to gain public support for their actions, they present all pain management doctors and clinics as nothing more than "legal drug mills". They present all chronic pain patients as "drug addicts". They engage in mass mis-information in order to gain public approval for their actions. As a result honest chronic pain patients are discriminated against on the grounds that "all chronic pain patients are drug addicts".

What they are doing is harassing any doctor who treats chronic pain patients, and causing chronic pain patients to be treated like drug addicts. We are required to undergo drug testing every month. Our prescriptions are closely monitored and dated exactly 30 days apart. We used to get a bit of overlap so that the patient didn't run out of medication should their appointment need to be rescheduled. Now, when the office sets my appointment on a day that is after I run out of medications, I have to suffer with the withdrawal symptoms and rebound pain because if the doctor writes a script without the urinalysis they can go to jail. Also he is not allowed to write a small script to cover the days between the end of my 30 day supply and my appointment. The doctors are no longer allowed to decide what is the appropriate dose for a particular patient, instead they are cautioned against writing a prescription over a specific dosage amount in order to keep their practice from being "investigated". This leaves patients who need a change in dose unable to get it, meaning they end up suffering with higher levels of pain than they should have to.

As if this isn't bad enough Florida is now making it even worse. Their rules have now made it impossible for my daughter to receive the medical care she needs because she pays cash.

The state has decided to investigate every chronic pain doctor, whether they have reason to believe the doctor is engaging in illegal activities or not. As a result my doctor has hired a lawyer, to provide guidance on reducing his risk of being accused, just in case. On the recommendation of the lawyer, the doctor has to stop accepting Medicaid patients and any cash paying patient who wishes to see him for pain management. The reason for this advice is that the majority of drug addicts who doctor shop (see more than 1 doctor to get meds) are usually cash paying patients or on medicaid and the doctors who are willing to provide prescriptions to addicts (the ones who actually run drug mills in southern Florida) and dealers will only accept cash payments for the office visit. This means my daughter, who has been a patient in this office for 5+ years, can no longer see this doctor as she has no insurance and pays cash for the visits. So as a result of this "War on Drugs" (which we have already lost) patients who need treatment can not receive it if they are on medicaid or pay cash! Exceptions can NOT be made for patients who can show very obvious conditions or injuries that would require pain management, nor can they be made for patients who have already been with this same doctor for many years and have never shown any signs of illegal activity or addiction, if they're on medicaid or pay cash. It is a case of "too bad, so sorry, go somewhere else"!

My daughter has some major damage to her lower back from a car accident. Her vertebrae no longer sit correctly one on top of the other, one of hers has slid off of the vertebrae beneath it by 50% (this is called  Spondylolisthesis ), she also has spondylosis (aka degenerative osteoarthritis), degenerated disks, a large herniated disk (that literally surrounds the sciatic nerve root at L3-4), nerve damage to sciatic nerve roots (L3-4, L4-5 and L5-S1) causing permanent sciatica, and suspected sacroiliitis. As a result they had to fuse her spine in this out of alignment position because the first attempted repair failed when the vertebrae slid off again despite the screws that should have held it in place. She now has rods, screws, plates, and posts in her lower back holding her spine together. As a result of these injuries she lives with constant pain and constant sciatica. She has been seeing the same doctor for pain management for over 5 years. She has never failed the drug screening. She has never shown any behaviors that are considered signs of an addict (such as losing scripts, constantly demanding an increase in dose or frequency, losing the medication itself etc.). Despite all of that, she has been discharged as a patient from her doctor just because she pays cash.

Not all pain clinics and pain management doctors engage in writing prescriptions for people they know are going to sell the drugs. My experiences with these clinics has been the exact opposite. It is very difficult to obtain prescriptions for pain control.

Every month I have to undergo urinalysis drug testing to ensure that I am not taking drugs I wasn't prescribed, doing illegal drugs (such as cocaine or pot) and that the level of prescribed medication in my urine is the correct level for the dosage I was prescribed. When or if my needs change (due to further injury or tolerance to current dose) it is extremely difficult to get my dosage changed as well. In fact, I was told a few months ago that no matter what they will not increase my dose any further and that I will just have to "live with" any increase in pain or new symptoms. Which I have been doing for the last 8+ months due to further injury caused by the yard sale I ran back in April 2011. This means I am now pretty much bed-ridden and will stay that way for the foreseeable future and my daily pain level stays around a 6 to an 8.

So the results of the war on drugs in Florida are that patients who need treatment can't get it if they are on medicaid or pay cash and patients who are receiving treatment can't receive proper treatment because the doctor can be arrested for doing their job.

This is WRONG!

Law enforcement agencies and lawyers (be they prosecution type lawyers or other types of  lawyers) should NOT be the ones making medical decisions for patients, the doctors should be.

I am terrified of how much worse this is going to get when Obamacare goes into effect. My understanding is that with Obamacare pain management doctors will be given a limit of how many controlled substance prescriptions they can write in a month. If they go over that number they can be arrested and charged with drug trafficking. As a result of this, how many more patients will end up without treatment? Example: doctor has 31 pain management patients. Gov't tells him he can only write 25 controlled substance prescriptions per month. This means 6 patients will go without pain management.

Further, it is my understanding that under Obamacare a government panel will decide what injuries deserve pain management and what dose is appropriate for said injuries regardless of the medical history of the patient. My worst injury does not have a diagnosis code (permanent compound fracture of left SI joint) because it is extremely rare to have a permanent fracture, so it won't be considered when this government panel decides what the appropriate pain management is for me. If my doctor prescribes something different from what they government tells him to give me, he will go to jail and pay very high fines.

Medical decisions should be made by DOCTORS, not government officials and not law enforcement officials.