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.